30 Days of Lung Cancer Facts You Didn’t Know You Didn’t Know #LCAM
THERE ARE 2 PRIMARY TYPES OF LUNG CANCER
Different types of lung cancer are described by the types of cells a pathologist sees under the microscope, per LUNGevity.org’s “Types of Lung Cancers” page:
- About 15% of lung cancers are Small Cell Lung Carcinoma (SCLC).
- About 85% of lung cancers are NON-Small Cell Lung Carcinoma (NSCLC).
- Per the American Cancer Society, there are three major types of NON-Small Cell Lung Cancer:
- Squamous cell lung cancer (also called epidermoid carcinoma)
- Large cell lung cancer
- Per the American Cancer Society, there are three major types of NON-Small Cell Lung Cancer:
- **Lung cancer is THE leading cause of cancer death, for men AND for women.** IF YOU HAVE LUNGS, YOU CAN GET LUNG CANCER.
- Please join us (and Like & Share!!) here on Facebook at Lynn Sherwood-Humphries each day AND at our health & healing website OddlyGrateful.com for “30 Days of Lung Cancer Facts you didn’t know you didn’t know”! You COULD save your life or the life of someone you love!
RESOURCES: The LUNGevity Foundation, who referenced the following: 1) Noone AM, Howlader N, Krapcho M, Miller D, Bresi A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2015, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2015, based on November 2017 SEER data submission, posted to the SEER website, April 2018; and 2) What is Non-Small Cell Lung Cancer? American Cancer Society website. https://www.cancer.org/cancer/non-small-cell-lung-cancer/about/what-is-non-small-cell-lung-cancer.html. Revised May 16, 2016. Accessed December 12, 2017. https://lungevity.org/for-patients-caregivers/lung-cancer-101/types-of-lung-cancer
“STAGING” of LUNG CANCER
- Staging is a way to describe where cancer is located, and whether it has spread to other parts of the body.
- Per the Cancer Treatment Centers of America, Small Cell Lung Cancer (SCLC) is typically staged as either “Limited” or “Extensive”:
- “Limited Stage” means that the primary, or original, cancer resides in one lung or in the nearby tissue. It may have spread to nearby lymph nodes or into the tissues between the lungs. It has NOT metastasized to the patient’s other organs
- “Extensive Stage” means that the cancer has moved (metastasized) outside of the original location of the primary lesion and to other organs and parts of the body, most commonly the brain, liver, and/or bones.
- Non-small cell lung cancer staging is typically identified via the TNM system:
- Tumor (T) describes the size of the original tumor. Lymph node (N) indicates whether the cancer is present in the lymph nodes. Metastasis (M) refers to whether cancer has spread to other parts of the body, usually the liver, bones or brain.
- A number (0-4) is assigned to each T, N, and M factor. A higher number indicates increasing severity. Once the T, N and M scores have been assigned, an overall stage is assigned.
- Stages of Non-Small Cell Lung Cancer:
- Occult stage non-small cell lung cancer: Cancer cells are found in sputum (a mixture of saliva and mucus coughed up from the respiratory tract); no tumor is found in the lung by imaging tests or bronchoscopy.
- Stage 0 non-small cell lung cancer: The cancer is very small in size and it has not spread into deeper lung tissues nor outside the lung.
- Stage I non-small cell lung cancer: Cancer may be present in the underlying lung tissues; lymph nodes remain unaffected.
- Stage II non-small cell lung cancer: The cancer may have spread to lymph nodes nearby or into the chest wall.
- Stage III non-small cell lung cancer: The cancer has spread from the lung/s to the lymph nodes or to nearby structures and organs, such as the heart, trachea and esophagus.
- Stage IV non-small cell lung cancer: The cancer has spread (metastasized) throughout the body and may now affect organs, bones, and soft tissues.
3. STATISTICS about LUNG CANCER & ITS HOSTS Click here to Read More
STATISTICS about LUNG CANCER & ITS HOSTS
- The LUNGevity Foundation reports that 1 in 16 people in the US will be diagnosed with lung cancer in their lifetime, and estimate that more than 234,000 people in the US will be diagnosed with lung cancer this year.
- More lives are lost each year to lung cancer than to colorectal, breast, and prostate cancers combined!!
- Lung cancer has been the leading cancer killer of women since 1987, killing almost twice as many women as breast cancer!
- Your gender or ethnicity does not matter. You may never have smoked a cigarette in your life. Lung cancer is the leading cause of cancer death every year, for men AND for women.(We’ll talk more about possible causation and correlation, risk factors, and stigma, later in this ‘30 Days of Lung Cancer Facts’ booklet.)
- Per the Bonnie J. Addario Lung Cancer Foundation, 1.2 to 6.2% are under the age of 40, and 13.4% are under the age of 50. My daughter, Lauren, was diagnosed, and died, at the age of 25. Lung Cancer is not always what you think you knew… If you have lungs, you can get Lung Cancer. Will you please help us share this message?
- The Royal Society of Chemistry shared the following analysis, which has reports similar to the statistics above:
RESOURCES: The LUNGevity Foundation, citing: Noone AM, Howlader N, Krapcho M, Miller D, Bresi A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2015, National Cancer Institute. Bethesda, MD, http://seer.cancer.gov/csr/1975_2015, based on November 2017 SEER data submission, posted to the SEER website, April 2018. Also, the Bonnie J. Addario Lung Cancer Foundation regarding age statistics and the Royal Society of Chemistry shared the attached image of statistics, broken down by cancer type, regarding annual diagnoses and cancer deaths.
4. SIGNS & SYMPTOMS of LUNG CANCER. Click here to Read More
SIGNS & SYMPTOMS of LUNG CANCER
First and foremost, and I implore you to do this: *YOU DO YOU!* YOUR symptoms, signs and scan results WILL likely be different than everybody else’s. Try not to compare yourself or your symptoms to others. You are a unique individual, with different biology, history and future than the person sitting next to you. YOU DO YOU and make every decision along YOUR path as you would want for your life. Stand up for who you are, where you are and what YOU need!
What is a “symptom” versus a “sign”? …Per MedicineNet: “Symptom: Any subjective evidence of disease. In contrast, a sign is objective. Blood coming out of a nostril is a sign; it is apparent to the patient, physician and others. Anxiety, low back pain and fatigue, for example, are all symptoms; only the patient can perceive them.”
- The ACS and the LUNGevity and Bonnie J Addario Foundations, among others, say to Look for the following:
- COUGHING: coughing up blood (or rust-colored sputum), or a cough that gets worse or does not go away.
- CHEST: Shortness of breath or other breathing trouble that is often worsened with deep breathing, laughing or coughing; New wheezing when you take a breath; Aches or pains in your chest, back, shoulders that don’t go away; Your voice is hoarse; Frequent or prolonged respiratory infections such as bronchitis or pneumonia.
- GENERAL: Headache or dizziness, numbness of an arm or leg, balance problems or seizures; Trouble swallowing; Swelling in the veins of your neck or face; Losing weight/appetite without trying to do so; Feeling tired or weak; Bone pain; Yellowing of eyes or skin, etc.
- Now, the challenge is: Most of these symptoms and signs CAN also be caused by something other than Lung Cancer. What IS the underlying SOURCE for YOU?!
Many symptoms indicative of lung cancer can ALSO be attributed to other illness or disease. This makes diagnosis particularly challenging and often leads to diagnosis only once the cancer has metastasized (spread), rather than earlier. Due to the aggressive nature of Small Cell Lung Carcinoma, for example, over 75% of patients are not diagnosed until the disease has already spread and is considered ‘Extensive Stage’, with median survival rates of only 6-12 months with ‘Western’ medical and pharmaceutical treatment, and 2-4 months without treatment. Time is of the essence in Lung Cancer diagnosis. Stay tuned for tomorrow’s segment regarding ‘Diagnostic Testing for Lung Cancer’.
RESOURCES: https://lungevity.org/for-patients-caregivers/lung-cancer-101/signs-symptoms; 2) https://www.mayoclinic.org/diseases-conditions/lung-cancer/symptoms-causes/syc-20374620ns; 3) https://www.cancer.org/cancer/lung-cancer/prevention-and-early-detection/signs-and-symptoms.html; and 4) MedicineNet (sign v symptom definition).
5. DIAGNOSTIC TESTING for LUNG CANCER. Click here to Read More
DIAGNOSTIC TESTING for LUNG CANCER
Most Lung Cancers are found because they are causing problems, and many are found while trying to diagnose an entirely different problem than suspected Lung Cancer. If the results of your history and physical exam suggest you might have lung cancer, your health care provider will recommend tests specifically to look for it. These could include imaging tests, cytology and/or biopsies.
3 *Primary* Types of Diagnostic Testing:
Results of sophisticated testing can tell your doctor the specific characteristics of your cells that can help determine your prognosis and guide your treatment.
Imaging Tests: An X-ray image of your lungs may reveal a nodule (lump) or abnormal mass. A CT Scan (Computed Tomography) might disclose the presence of small lesions (a ‘lesion’ is a tumor or tumor-like condition) in your lung/s or distant parts of your body that might not be seen on an X-ray. An MRI (Magnetic Resonance Imaging) uses strong magnets and sound waves to view soft tissue areas, such as the brain and spinal cord. A Bone Scan uses a series of images taken after injecting a small amount of radioactive chemicals, which tend to accumulate and can be seen in areas of bone affected by cancer. Finally, a PET Scan (Positron Emission Tomography), consists of having an injection with a slightly radioactive form of sugar that tends to collect in cancer cells, which are then able to be seen via a special camera creating pictures of the radioactive centers of the body if cancer is present. Sometimes a CT and PET Scan are combined, allowing radiologists to see enhanced CT imaging after the PET radioactive materials are introduced into the body for the PET Scan.
Cytology & Blood Tests: Early morning sputum (mucus from the lungs) analysis under a microscope, known as Sputum Cytology, may be a diagnostic tool for certain cancers that start in the major airways of the lung, such as most small cell and squamous cell lung cancers. While Blood Tests do not diagnose Lung Cancer, they can be a good indicator of overall health. A CBC (Complete Blood Count) and other blood chemistry tests can help discern if the liver is working efficiently, for example, or that bone pain could be attributed to higher than normal levels of calcium and alkaline phosphatase (and therefore possible cancer cell invasion), etc.
Tissue Sample Biopsy: A sample of cells is removed from the body via 1) a bronchoscopy (using a lighted tube, inserted down the throat and into the lungs, to examine possible abnormal areas of the lungs), 2) mediastinoscopy (when samples from the lymph nodes are extracted from behind the breastbone via surgical tools inserted through an incision made at the base of the neck), or 3) needle biopsy (during which a needle is inserted, to collect suspicious cells, through the chest wall or suspect organ/s). Analysis of the cancer cells in a lab will reveal what type of lung cancer you or your loved one have.
RESOURCES: 1) https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/learn-about-lung-cancer/how-is-lung-cancer-diagnosed/; 2) https://www.lungcancer.org/find_information/publications/163-lung_cancer_101/267-diagnosing_lung_cancer; 3) https://www.cancer.org/cancer/small-cell-lung-cancer/detection-diagnosis-staging/how-diagnosed.html
6. TREATMENT OPTIONS: “TRADITIONAL & WESTERN” Click here to Read More
To Treat or Not to Treat? There are a host of possible “Western”, “Eastern”, and “Non-Traditional” treatments you might choose, in addition to the option of not ‘treating’ at all. An intensely personal decision, the following are just a few options for treating your Lung Cancer, or not…. Please speak with your family, trusted advisors, and health care providers.
Traditional “Western Treatment” approaches include the following:
Surgery: Localized Non-Small Cell Cancer (NSCLC) lesions may be able to be excised (removed) with surgery such as a Resection (removal of a small part of the lung where the tumor is located), a Lobectomy (removal of an entire lobe of the affected lung), or Pneumonectomy (removal of the entire lung). Small Cell Lung Carcinoma (SCLC) is rarely considered operable unless found incidentally in a very early “limited” stage.
Chemotherapy: The most commonly used chemotherapy options (treatment that uses drugs to stop the growth of cancer cells, either by killing the cells or by stopping them from dividing), for both NSCLC and SCLC, currently include a Platinum-based drug with the addition of an adjunct drug, the decision for which is based on the particular molecular biology of your cancer. (We will be addressing types of chemotherapy in Topic #7.)
Radiation Therapy: The use of high-energy radiation from x-rays, gamma rays, neutrons, protons and other sources to kill cancer cells and shrink tumors.
Prophylactic Cranial Irradiation (PCI): preventative radiation therapy to the brain, if the patient exhibits good response to other therapies. This is recommended in order to lower the risk of brain metastasis, a very common site of SCLC recurrence, in particular.
Clinical Trials: New drugs go through a series of testing, with significant and standard monitoring, before widespread government approval. Being part of a Trial can have significant benefits (if it’s working for YOU), or risks and challenges (if it’s not working for you and/or for others). We will speak more about Trials in Topic #9.
Palliative Therapy: Radiation, pain management, emotional support, planning and holistic care are areas of focus for ‘palliative care’. They are often used to help control the symptoms of cancer. For example, in addition to working to shrink or eliminate the actual cancer, radiation may be used in managing symptoms such as bone pain due to bone metastases, headaches and weakness caused by brain metastases, bleeding from the lungs, and bowel or bladder symptoms caused by obstruction of the spinal cord. It is not curative; it may help to reduce the cancer symptoms you may experience. You may also get help finding ways to manage stress, fear, and planning for your health care future and the well-being of your family. A good palliative care provider may help your spiritual, emotional, and physical journey while navigating Lung Cancer. HERE is one educational opportunity for learning more about Palliative Care, from Lung.org. Resources: https://www.verywellhealth.com/small-cell-lung-cancer-2249366, https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/patients/treatment/types-of-treatment/supportive-palliative-care.html
7. TREATMENT OPTIONS: “NON-TRADITIONAL, EASTERN MEDICINE & ADJUNCT THERAPIES” Click here to Read More
To Treat or Not to Treat? There are a host of possible “Western”, “Eastern”, and “Non-Traditional” treatments you might choose, in addition to the option of not ‘treating’ at all, letting life and cancer runs its course. Yesterday, in Topic 6, we discussed treatment options via the ‘Traditional Western Treatment’ model of care. Today, let’s examine age-old and modern ‘Eastern Medicine’ modalities and options which some use in lieu of, and some use concurrently with, a Western approach. Talk to your family & your health care providers.
Traditional “Eastern” and “Non-Traditional” approaches include the following:
Chinese Herbal Medicines and Treatments: The Chinese have been using herbs to treat underlying cancers and the symptoms of cancer for generations. Approximately 133 herbs are believed in the culture to be curative to eliminate certain cancer cells, or palliative in taming of symptoms. Acupuncture originated in China and now also widely practiced in the west, it is used frequently as a complementary treatment. It involves pricking the skin/tissues with needles to treat various emotional, physical and mental conditions as well as to alleviate pain.
Aromatherapy, Ayurveda and Massage: Though not supported with scientific study, it has been suggested that breathing vapors from certain aromatic oils, such as lavender, thyme and peppermint, seem to reduce certain side effects of chemotherapy, namely nausea, vomiting, depression, pain and stress. Developed more than 3000 years ago in India, Ayurvedic therapy is based on the belief that health and wellness in mind, body and spirit go hand in hand. Western medical professionals caution possible toxicity in ingestible metals commonly used with Ayurvedic therapies and, as with all ‘non-traditional’ options, suggest full disclosure with your medical team regarding possible use of therapies concurrent with western treatments. Massage (by an experienced professional with knowledge about your particular type and stage of cancer) might help alleviate painful symptoms in your chest, neck, shoulders and upper back (common areas where people with lung cancer feel pain).
Hypnosis, Meditation, and Physical Exercise; Dietary Supplements, Homeopathic Recipes, and Hydrotherapy; Social, Legal & Spiritual Counseling; Chiropractic Care; Medical Marijuana, Rick Simpson Oil, CBD Oil with and without THC, and other ‘underground’, frequently stigmatized, and also under-studied modalities that might hold hope:Commonly practiced, there are so many more ‘alternative’ treatment options than I can even fit on this one-page document that you and your family, with your health care teams and trusted advisors, might consider. Ask key questions in your evaluations regarding EVERYTHING in pages 6 and herein in 7: Have studies proven that it helps? What are the risks and side effects? Will insurance cover the cost of treatment? Will your healthcare providers and complementary medicine providers work together? Will it interfere with my traditional ‘western medicine’ or holistic traditional ‘eastern’ approach, if choosing such?What do YOU want for YOUR body?
RESOURCES: https://www.healthline.com/health/lung-cancer-alternative-treatments#outlook, https://www.everydayhealth.com/lung-cancer/guide/alternative-complementary-and-palliative-care/, and a myriad tidbits and compilations of years of miscellaneous publications by memory and interpretation….
8. TREATMENT OPTIONS: THE CHOICE TO NOT TREAT YOUR LUNG CANCER Click here to Read More
An intensely personal decision, NOT treating your cancer, at ANY point, is also a choice…. Please speak with your family, trusted advisors, and health care providers.
Now that we’ve looked at many types of traditional and non-traditional treatment options, as you might guess, there is also the option to NOT treat your Lung Cancer.
Every BODY responds to treatment a bit differently than anyone else. You and your cancer are unique. Chemotherapy can be rough (even very rough); it can ALSO be life-saving or life-prolonging, and possibly help manage your painful symptoms or potential symptoms! YOU HAVE CHOICES.
At any point on your journey, you have the right to not treat. In fact, you might have already made up your mind before diagnosis of ANY disease, saying something like: “I’m 127 years old, I’ve lived a fantastic life, I’ve ‘got my affairs in order’, my children and great-great-great-great grandchildren know I love them, and I’m ready to go to the good lord when he’s ready to have me”. Conversely, you might have decided that you will do everything medically and scientifically possible to extend your life or lessen your symptoms.
You may “sail through” and experience very few treatment side effects from your treatments, as co-author Jason’s mom experienced! (GO MOM!!) On the other hand, you might feel as though the treatment side effects are lessening your daily quality of life as you deal with cancer’s symptoms as well, as my daughter, Lauren, experienced. You may make the choice to manage and control your pain and symptoms, instead of treating for a cure, while you ‘get your affairs in order’ – and to take that bucket list trip to Alaska, too…
Your treatment goals and your decision might depend on a variety of factors:
Pain Your general health Stage of your cancer Your prognosis Finances Spirituality/religion How current treatments are working for you Age Symptoms & Side effects Impact on you and your family/friends Impact on your work Treatment challenges & benefits Your personal values
It is important to know that at any point you can make the choice to not treat, or stop treatment, for yourself. Loved ones and friends, even your health care team, may not agree with your decision, yet it is still your decision. You ALSO have the right to resume treatment, whether in the quest to cure, stabilize your tumors, or treat your pain and cancer’s other frequent symptoms! Staying informed of your care opportunities all the way along your journey will be key for your physical and emotional peace.
There is so much more for you to investigate regarding this discussion ~ hope and mindset, the ‘right to die’ debate, the importance of having an advocate, how to help your friends and family through their pain as they support you in your choices, what living with cancer or terminal cancer is really like, and more! I’m not an attorney, doctor or pharmaceutical rep, just a woman whose life has been touched by cancer and who wants to help you investigate and make informed decisions for your life, cancer, and care. 🙂
RESOURCES: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3995268/, https://www.mayoclinic.org/diseases-conditions/cancer/in-depth/cancer-treatment/art-20047350, https://www.cancer.org/treatment/understanding-your-diagnosis/talking-about-cancer/listen-with-your-heart/if-loved-one-refuses-treatment.html, and https://www.verywellhealth.com/when-should-you-stop-cancer-treatment-2249017
9. TREATMENT OPTIONS: CHEMOTHERAPY FOR LUNG CANCER Click here to Read More
CHEMOTHERAPY FOR LUNG CANCER
Chemotherapy (or simply “chemo”) remains the mainstay of treatment for all subtypes of lung cancer. However, given recent and ongoing advances in immunotherapy and targeted therapy, many researchers feel that in just a few years this won’t necessarily be the case, especially for certain kinds of NSCLC. Nevertheless, at the moment nearly everyone who is treated for lung cancer will be treated with some type of chemotherapy at some point.
Chemo can be used in a number of different contexts:
- Before surgery (sometimes along with radiation therapy) to try to shrink a tumor.
- After surgery (sometimes along with radiation therapy) to try to kill any residual cancer cells not removed during surgery.
- Along with radiation therapy (concurrent therapy) when the tumor can’t be resected by surgery because the cancer has grown into nearby structures
- As the main treatment (sometimes along with radiation therapy) for more advanced cancers or for some people who aren’t healthy enough for surgery.
Chemo works by targeting fast-dividing cells in the body for destruction. While this includes “bad” cancer cells, it also includes other “good” cells like hair, nails, digestive track and bone marrow. This causes hair loss, nail breakage, nausea, digestive problems, weak immune systems and a variety of other side-effects. For precisely this reason, patients and family members typically have a lot of anxiety about chemo, with many wondering if this treatment is worse than the disease.
Chemo affects different people very differently, and advances in concurrent treatments to manage side-effects and dosing means that it need not be a grueling process. Indeed, some people breeze through chemo with few if any side effects and are able to maintain a normal level of activity, while others do indeed struggle and require medical attention to treat infections, low counts of white blood cells and other dangerous impacts from chemo. Moreover, certain kinds of chemo can cause a lot of adverse effects in some patients, while these same people have no problems with others.
Though oral administration is sometimes available, chemo is typically delivered intravenously in “cycles” ranging from a single session to multiple sessions per week. Furthermore, chemo is often given as a combination a couple of chemo drugs or a chemo drug plus targeted or immunotherapy. For example, a common cycle for SCLC is three days of chemo a week – often one day with a double agent and two days with a single agent – followed by three weeks of rest in order to allow the bone marrow to replenish blood cells. This cycle is repeated 4-6 times depending on the efficacy and the patient’s tolerance of the drugs.
The first chemo session in a cycle is often preceded by various lab and blood tests as well as a doctor examination. The final session in a cycle is typically followed by the administration of drugs to boost the immune system, which tends to “crash” a week or so after chemo given the damage to bone marrow cells. Neulasta® has become a popular treatment of this kind because it saves a trip to the hospital the day after chemo. Attached to the patient’s arm or abdomen, it automatically delivers an injection of medication to boost the immune system before being removed by the patient. The most common side-effect of Neulasta® is bone pain precisely because it stimulates the bone marrow to produce more blood cells.
Chemo regimens are very different between NSCLC and SCLC, as well as between different subtypes of NSCLC. Sometimes chemo regimens are determined by individual patients’ response to them in terms of side-effects. In both NSCLC and SCLC, a platinum-based regimen, typically carboplatin or cisplatin, remain the most popular options. Cisplatin is generally more effective on debulking large tumors but is somewhat harsher on the body than carboplatin.
For NSCLC here are the available chemo regimens:
- Paclitaxel (Taxol)
- Albumin-bound paclitaxel (nab-paclitaxel, Abraxane)
- Docetaxel (Taxotere)
- Gemcitabine (Gemzar)
- Vinorelbine (Navelbine)
- Irinotecan (Camptosar)
- Etoposide (VP-16)
- Pemetrexed (Alimta)
For SCLC, nearly all SCLC treatment starts with carboplatin or cisplatin plus etoposide or sometimes irinotecan. On rare occasions other drugs are tried if these treatments cannot be tolerated by the patient.
10. TREATMENT OPTIONS: CHEMOTHERAPY vs. IMMUNOTHERAPY vs. TARGETED THERAPY AND LUNG CANCER Click here to Read More
CHEMOTHERAPY vs. IMMUNOTHERAPY vs. TARGETED THERAPY AND LUNG CANCER
There are 3 main types of systemic pharmaceutical treatment for cancer:
- Chemotherapy – The most widely-used and effective systemic treatment for cancer, it works by targeted fast-dividing cells in the body. While this includes “bad” cancer cells, it also includes other “good” cells like hair, nails, digestive track and bone marrow. This causes hair loss, nail breakage, nausea, digestive problems, weak immune systems and a variety of other side-effects. Multiple types of chemotherapy are available for NSCLC and SCLC, though carboplatin and cisplatin remain predominant. However, given the multitude of advanced treatments appearing for NSCLC, some researchers are beginning to see chemo as a thing of the past for that disease. It remains the standard of care for first and second line treatment for SCLC.
- Immunotherapy – This category of drugs has recently come onto the cancer scene, with the first FDA approval awarded to Yervoy in 2011 and the 2018 Nobel Prize in Medicine going to James Allison and Tasuku Honjo for their advances in the field. Immunotherapy works in an almost opposite way to chemotherapy by programming the body’s natural immune system to target cancer cells. However, this sometimes causes the immune system to hyper-react and attack healthy cells, such as those of the joints or digestive system. Though generally better-tolerated by patients than chemotherapy, immunotherapy seems to produce a wider and more random array of side-effects, and, given its relative newness, the full set of side-effects and long-term ones are not very well understood.
- Targeted therapy – Targeted therapy refers to treatment with drugs that have been developed to target cells that deviate from normal cells in some specific ways. For example, cancer cells exhibit different variants of proteins or lack/abundance of certain kinds of proteins. Targeted therapies will attack cells exhibiting these differences. For example, the cell growth signaling protein BRAF is present in an altered form (known as BRAF V600E) in many melanomas. Vemurafenib (Zelboraf®) targets this mutant form of the BRAF protein and is approved to treat patients with inoperable or metastatic melanoma that contains this altered BRAF protein. Because they only attack deviant cells, targeted therapies generally produce the fewest side-effects.
NSCLC, particularly adenocarcinoma, has been one of the most promising cancer battlegrounds for targeted and immunotherapy, with a consistent flow of advances both in terms of new drugs targeted toward specific mutations as well as additional indications for existing drugs. Unfortunately, one of the difficulties of SCLC is that is has very few treatment options available, unlike NSCLC. Platinum-based Chemotherapy (typically carboplatin or cisplatin combined with etoposide) remains after decades the standard of care. However, these chemotherapies often produce significant side effects, and though initially highly-effective (estimates ranging from 60-90%), these treatments are often confounded by a resistant relapsed disease.
Targeted therapies have been approved for NSCLC, including Bevacizumab (Avastin) and Ramucirumab (Cyramza), with clinical trials ongoing for new drugs and expansions of existing drugs to include an NSCLC indication. Unlike with NSCLC, targeted therapies have produced disappointing results in trials for SCLC, and none are currently approved as a treatment. There are some promising signs lately, such as PARP inhibitors combined with thoracic radiation, but trials are in very early stages.
Immunotherapy is now accepted as an important component of lung cancer treatment, with FDA approval for a number of drugs and indications. Even for SCLC, there have been some very hopeful clinical trials showing significant efficacy of Opdivo, Keytruda and Tecentriq. In fact, the FDA broke new ground by approving Opdivo as a third-line treatment for SCLC in August 2018.
However, the difficulty has been finding biomarkers which would indicate immunotherapy efficacy for SCLC. For instance, with NSCLC and other cancers, genetic tests showing certain mutations (PD-L1 often seen as the most significant) indicate the use of certain immunotherapies. With SCLC, there have been mixed signals about what biomarkers indicate immunotherapy efficacy, probably due to the fact that SCLC tends to have a very high concentration of mutations, meaning the cancer grows and spreads through multiple pathways. This topic is currently the subject of ongoing research, but many leading researchers currently believe high tumor mutation burden (TMB) and Microsatellite Instability (MSI) are useful indicators, with some disagreement over the significance of PD-L1 in SCLC. Expect more advances in the coming years, with a flurry of hopeful findings coming in the last half of 2018 alone.
Cameron, F., Whiteside, G. & Perry, C. Drugs (2011) 71: 1093.
Li, Yuan, Ma, Liu, Ma, Lv & Song. Neoplasma. 2016;63(3):342-50. doi: 10.4149/302_151001N511.
11. RADIATION THERAPY for LUNG CANCER Day 11 – Lung Cancer Facts Click here to Read More
RADIATION THERAPY for LUNG CANCER
Radiation therapy works by delivering focused high-energy rays or particles (x-rays, gamma rays or atomic particles) which make small breaks in the DNA inside specific cells. These breaks keep cancer cells from growing and dividing and cause them to die. It is usually a local or targeted treatment, unlike chemotherapy which exposes the whole body to cancer-fighting drugs while killing many “good” cells along the way. Radiation may come from a machine outside the body, or it may come from radioactive material placed in the body near cancer cells. These processes target and eliminate or shrink the tumor while minimizing adverse effects on nearby healthy organs and tissues. For advanced cancers that cannot be cured but controlled (‘stabilized’), radiation therapy can be used to lessen symptoms such as cough, shortness of breath, or pain.
What Types of Radiation Therapy Are Used for Lung Cancer?
- Intensity Modulated Radiation Therapy (IMRT): Using computer generated images, numerous external beam angles deliver doses of radiation carefully calculated to target the specific shape and size of each tumor.
- Image Guided Radiation Therapy (IGRT): Taking IMRT to the next level, this technique improves targeting accuracy, as pictures are taken prior to each radiation session to guide the radiation beam during therapy.
- Stereotactic Radiosurgery (SRS): This external radiation therapy is most commonly used to treat tumors in the brain; Gamma Knife surgery is an example SRS, and is actually not surgery at all but uses up to a couple hundred accurately focused external beams to kill the tumors without harming surrounding tissues. Stereotactic Body Radiation Therapy (SBRT) delivers radiation directly to tumors in the body and kills smaller tumors most commonly in the liver and lung. In both cases, the dose is spread over a period of time.
- Brachytherapy: Guided by an imaging machine, a small object containing radiation materials is surgically implanted directly inside the tumor.
Why Might Radiation Therapy Be Chosen?
- Curative: If the cancer is considered curative (able to be cured), radiation therapy can sometimes augment or replace surgery and/or chemotherapy as it targets and breaks up the cancerous DNA, while protecting surrounding tissue.
- Preventative: Called PCI (Prophylactic Cranial Irradiation), can be used to radiate the entire brain to prevent cancer recurrence or lung cancer spread (metastasis) to the brain. The brain is often the first site of small cell lung cancer recurrence after successful treatment to the chest.
- Palliative: Radiation can be used even once the cancer has advanced to manage symptoms and side effects such as cough, bone pain and bleeding caused by cancers. Short term radiation can help stave off bowel and bladder control issues, or possible paralysis, when treating tumors in the spinal column. These paliate, or relieve, pain and other side effects, even when the goal of treatment is not to “cure”, because they can better quality of life.
What Should I Expect During my Radiation Treatment?
Radiotherapy machines usually rotate around YOU. The machine does not touch you at any point. You should expect to be very still for a period of time, sometimes even having an apparatus to secure your body in a single position, such as a mask secured to the table during brain radiation so the external beams can target with pinpoint accuracy. (You will be able to easily click out of the mask or restraint in an emergency!) You may hear a whizzing, machines clanking, and beeping from your machine and in your room, and you will be able to communicate with your care team in some manner.
You may experience some of these side effects from radiation, depending on your treatment location:
- Fatigue & Weakness
- Hair loss or changes to hair
- Skin irritation (reddened, dry, itchy, tender)
- Sun sensitivity
- Temporary loss of appetite
- Difficulty swallowing
- Nausea or Vomiting
- Trouble swallowing
- Dry mouth or mouth irritation
- Bowel changes
- Swelling and soreness
- Emotional effects
Longer term side effects of radiation vary significantly on the location irradiated; brain radiotherapy may lead to memory loss (you will likely be prescribed medication for dementia), swelling, etc. Radiation to the chest can increase the chance of secondary cancers. Osteoporosis and bone density changes, and changes to fertility or teeth/gums/mouth, may occur. Evaluation of the goals for your radiation (curative, preventive, palliative) will be key to evaluating if radiation is right FOR YOU!
12. IS SURGERY AN OPTION TO TREAT LUNG CANCER? Click here to Read More
12 – IS SURGERY AN OPTION TO TREAT LUNG CANCER?
In lung cancer, surgery is usually only undertaken as part of a plan of curative intent, meaning to remove the primary tumor from your body and eliminate the cancer. It would often be followed by radiation and/or chemo to “clean up” any residual cancer cells that might still at the site of the tumor or have traveled in the body. Cancer that has become wide-spread around the primary tumor or lungs or traveled in measurable ways (i.e. visible on a scan) is not usually considered for surgery because removing the primary tumor would serve little purpose – and subject your body to the dangers, risks and harm from surgery – if there is active cancer elsewhere. Indeed, the surgery would weaken you, thus delaying systemic treatment for the rest of your cancer, and with cancer, the sooner the treatment the better.
For this reason, surgery is usually only considered for NSCLC if the cancer is contained to single or couple of nearby tumors in the same lung, without involvement of distant lymph nodes or deep into various lung tissues and airways (essentially stages 0-III). In general, the more advanced the cancer, the more likely you’ll have some sort of follow-up treatment.
Given its aggressive and highly metastatic nature, SCLC generally has not considered for surgery since the 1970’s. However, recent studies have shown that for very early stages – single lung tumors without lymph node activity – surgery may have an important role to play. Nevertheless, as SCLC is generally very fast-moving and typically has metastasized at the time of diagnosis, the patients this describes are relatively few in number (fewer than 1 in 20 according to the American Cancer Society). However, this is more testimony to the fact that, although highly lethal, SCLC can be cured.
Given the inherent risks of surgery and the fact that the recovery period may delay subsequent treatments, surgery should be weighed carefully, and for this reasons, earlier stage cancers are more likely to be treated surgically. Furthermore, extensive testing and scanning is normally done to confirm that the cancer has spread beyond the primary site, because surgery would not be advisable if it has.
There are four major types of lung cancer surgery:
- Pneumonectomy: This surgery removes an entire lung. Given the trauma this creates for the body as well as potential later impact on quality of life, this might only be performed if the tumor is close to the center of the chest, where it can more easily spread to multiple lobes.
- Lobectomy: The lungs are made up of 5 lobes (3 on the right and 2 on the left). In this surgery, the entire lobe containing the tumor(s) is removed. This is often the preferred type of operation of it can be done because it removes the entire lobe – enough to eliminate cancer that hasn’t spread while likely impacting future quality of life significantly less than if a whole lung was removed.
- Segmentectomy or wedge resection: In these surgeries, only part of a lobe is removed. This approach might be used, for example, if a person doesn’t have enough lung function to withstand removing the whole lobe.
- Sleeve resection: This operation may be used to treat some cancers in large airways in the lungs. If you think of the large airway with a tumor as similar to the sleeve of a shirt with a stain a couple of inches above the wrist, the sleeve resection would be like cutting across the sleeve above and below the stain and then sewing the cuff back onto the shortened sleeve. A surgeon may be able to do this operation instead of a pneumonectomy to preserve more lung function.
Parvaiz A. Koul, Lung India (2012): v.29(1).
13. WHAT THE HECK IS A PORT ~ and do I want one? Click here to Read More
WHAT THE HECK IS A PORT ~ and do I want one?
What is a PORT? Also known as the “port-a-cath”, a PORT is a small device implanted under the skin to allow easy and direct access, quickly, to your bloodstream. A port can be used for blood draws, chemotherapy or IV infusions, or blood transfusions. Typically inserted during surgery that addresses your cancer, or same-day surgical procedure under local anesthetic.
- How is a port inserted, and will I feel it? During insertion, a small round plastic or metal disc is placed under your skin through an inch-or-two-long incision, typically in your upper chest area or occasionally your upper arm. The port is then attached to a catheter tube that is threaded into one of the large veins near your neck and ends near the top of your heart. This is done anesthetic and radiographic vision, such as x-ray or ultrasound, to make sure the end of your port is in the proper location. After a port is placed in the body, you will notice a slight protrusion of your skin, over the port.
- What are the potential benefits of having a port? During chemotherapy infusions, blood transfusions, or blood draws, a nurse will insert a needle into your port in an area called the “septum,” which is a re-sealing rubber center on your port. You will feel a needle poke/ pinch. Medications are then administered directly into the venous circulation via a syringe or tube (intravenous catheter). Advantages include greater comfort (versus multiple intravenous sticks for tests or therapy), no delays in finding a ‘good vein’ for blood draws or chemo infusion, lesk risk of medications leaking into other tissues surrounding the IV site, and enjoying greater ease in bathing and swimming without being concerned with infection, since the port is completely under your skin.
- What are the potential risks, challenges and disadvantages of having a port? All surgical procedures carry the risk of infection, thrombosis (blood clots), potential limitations in activity, and scarring leading to other-than anticipated results. With ports, another potential concern is a mechanical problem (movement of the catheter, separation of port from skin, etc) that might cause the port to stop working.
*Infection is the most common complication of having a port. Contact your doctor if you note any redness, pain or sweating, or develop a fever or drainage around your port.
- What is the difference between a Port and a PICC Line or IV? A PICC (Peripherally Inserted Central Catheter) is usually placed in your arm, closer to your skin, into a vein for a pharmaceutical treatment that will be needed for only one to six weeks. An IV (intravenous) device will be inserted even closer to the skin’s surface and is used as an another, more temporary (typically 3-5 days) delivery method to administer fluids such as medications, blood or nutrients.
- Will my port be removed? When you and your medical care team are confident that you no longer need your port, it will be removed in a surgical procedure, typically in under an hour and with the same visual radiographic aids and anesthetic. You will see a scar.
https://www.cancer.net/navigating-cancer-care/how-cancer-treated/chemotherapy/catheters-and-ports-cancer-treatment, https://www.cancer.gov/publications/dictionaries/cancer-terms/def/port, and https://www.whatnext.com/blog/posts/what-is-a-chemo-port-and-why-you-will-want-one
14. LUNG CANCER SYMPTOMS vs. TREATMENT SIDE EFFECTS Click here to Read More
LUNG CANCER SYMPTOMS vs. TREATMENT SIDE EFFECTS
A SYMPTOM is an indication of a disease. A SIDE EFFECT is any effect of a medicine or procedure that is in addition to its intended effect; a secondondary and typically adverse reaction.
A challenge in managing cancer is addressing the symptoms of cancer AND the side effects of treatment. Frequently, discerning the root cause of an issue, cognitive and neurological problems in learning, processing and balance, for example, is challenging because the oncologist knows this is a frequently experienced side effect of chemotherapies, yet it could also be a symptom of the lung cancer having metastasized (spread) to the brain. It is also common for people with lung cancer to have breathing problems, which can be caused by the cancer itself, or infection, certain chemotherapy drugs, fluid around the lungs or heart, or a condition called radiation fibrosis.
- In Topic/Page #4, we discussed the most common signs and symptoms leading to lung cancer diagnosis, including cough, shortness of breath, wheezing, aches and pains in your chest, back and shoulder, hoarse voice, respiratory infections, headache and dizziness, numbness of an arm or leg, balance problems, seizures, weight loss, bone pain, yellowing of the skin, etc.
- If the cancer is growing or spreading, breathing problems may intensify, neurological concerns such as confusion, agitation, coordination concerns, etc. might be seen, bowel and bladder control issues might arise, bone pain may increase, and seemingly unrelated concerns could be indicative of growth or metastases. Please stay in good communication with your doctors.
Common side effects of treatments such as chemotherapy, steroid treatments and radiation are:
Fatigue Infection Bleeding & Blood Chemistry Concerns Dry Mouth
Nausea Vomiting Constipation or Diarrhea Weight Gain or Loss Insomnia
Cognitive (brain processing) Problems Swelling Infertility Joint & Bone pain
High Blood Pressure Hearing Loss/Ringing Blurry Vision Lightheadedness/chest pain/shortness of breath Peripheral Neuropathy (Tingling in the hands/feet after damage to nerves)
Neurological Impairment (balance, mood changes, etc; learning, memory and attention difficulties )
Sometime, side effects for treatment are seen well after the treatment has been completed.
Longer-term side effects (“Late Effects”):
- Menopause & Hormone Changes Lymphedema (lymph swelling; causes pain & swelling)
- Heart Conditions (ie: congestive heart failure, arrhythmias (irregular heartbeat), coronary artery disease)
- Inflammation in the lungs Hormone Changes & Imbalances Osteoporosis
- Brain, Spinal Cord & Nerve Problems Hearing Loss Increased Risk of Stroke
- Bone, Joint & Soft Tissue Problems Vision Impairment (including developing cataracts)
- Dental/Oral Health Concerns (gum disease, decreased saliva production Digestion Problems
- Emotional Difficulties (“Survivor’s Guilt”, fear of the cancer returning, depression, anxiety, etc.)
- Secondary Cancers (a new cancer that occurs as a result of previous treatment w/ radiation or chemo)
Writing down details you may not even think are of significance, and communicating well with your medical team, will help them evaluate and share options for your treatment goals!
RESOURCES: https://www.cancer.net/navigating-cancer-care/side-effects, https://www.cancer.org/treatment/treatments-and-side-effects/treatment-types/chemotherapy/chemotherapy-side-effects.html, https://www.healthination.com/health/coping-with-lung-cancer-stigma?pl=lung-cancer-diagnosis-and-treatment&utm_source=fbpaid&utm_campaign=lung_library&fbclid=IwAR1Su8Ipy75eqvFyCypNk2tGanUnOKSDKcEw1erLxKXTiWSw61u-PLMvh_0, and http://cancer.unm.edu/cancer/cancer-info/cancer-treatment/side-effects-of-cancer-treatment/long-term-side-effects/secondary-malignancies/
15. CLINICAL TRIALS for LUNG CANCER Click here to Read More
CLINICAL TRIALS for LUNG CANCER
Clinical trials are research studies that look at new ways to prevent, detect, or treat disease. Some involve testing of a new medical device, pharmaceutical, or other treatment option may be more effective than currently available options. Some trials test theories about cancer prevention, or study the life span post-treatment to learn about long-term efficacy of a technique or pharmaceutical. All involve a set of standards by which the study is managed to determine if the theory, device or drug actually help, in what circumstances, and how to best use such in a specific group of people.
- What tests and treatment would I receive? It is important to know that in a clinical trial, you will not receive less than the ‘standard of care’ or what is currently considered to be the best practice. For example, if you are participating in a drug trial, you will either be given the new drug being tested OR the currently approved drug/s your oncologist would be choosing for you even if you were NOT in the trial. Diagnostic testing would include the current standard of care, even if new methods or devices were to be added for evaluation.
- What does a clinical trial “phase” mean? There are four phase to a clinical trial:
- Phase I occurs after much lab testing (and possibly testing on animals) to test if a drug is safe for humans. Researchers evaluate safety, side effects, and how the drug is absorbed, metabolized and excreted. About 70% of experimental drugs move past this stage.
- Phase II trials test the effectiveness of the device or drug. There is a control group who receives the current best medications and a test group who receives the experimental drug. Frequently the participants and researchers do not know which group the patient is in (called a ‘double blind’ study). This phase can last up to a few years.
- Phase III trials include randomized, blind studies of several hundred or thousands of participants. Researchers and the FDA collect data about the drug’s effectiveness and potential side effects before bringing the new drug to market.
- Phase IV “post marketing surveillance trials” take place to monitor a drug’s long term effectiveness and impact (as it may take years for longer-term side effects to appear), and to compare it to other trials and drugs in the market.
- What are the benefits & risks? If you choose (and are deemed eligible for) a Clinical Trial, you may be among the test group receiving a new drug or treatment that may be superior to the currently used best treatment. Sometimes, these trials can also be free of cost to you, or you may even be paid to participate. However, the potential treatment might not work as anticipated, unexpected side effects may occur, and the test treatment being evaluated may have risks yet unknown to humans, even though it has been evaluated for years in the lab by researchers. Speak in depth with your doctor, study team, and family about as you weigh the benefits and risks of participating in any clinical trial.
- Will I be eligible? There are very specific eligibility and INeligibility criteria for all phases of all clinical trials. From your age, health history, genetic test results, type and stage of your cancer, what treatments you’ve had thus far, etc, there may be hundreds of standards you must meet to meet the eligibility requirements for each trial considered.
- There are hundreds of clinical trials taking place right now. After your conversations with your oncologist, he or she should be able to lead you to resources for registries and trials for which you may be eligible if you choose to investigate clinical trials for your needs.
RESOURCES: https://www.fda.gov/forpatients/approvals/drugs/ucm405622.htm, https://www.lungcancer.org/find_information/publications/163-lung_cancer_101/272-clinical_trials, https://lungcanceralliance.org/treatments-and-side-effects/clinical-trials/, https://www.cancer.gov/about-cancer/treatment/clinical-trials/search, and https://www.cancer.gov/about-cancer/treatment/clinical-trials/what-are-trials
16. LUNG CANCER: UNDERSTANDING YOUR PROGNOSIS Click here to Read More
Lung cancer across all subtypes has long been a grim disease, with a poor prognosis and short survival times relative to other types of cancer. However, this is changing with rapid advancements in treatments and symptom management. Furthermore, all of the statistics have numerous caveats which limit their applicability to individual cases and make interpreting them a challenge. What is undeniable is lung cancer is a very dangerous disease with a high risk of mortality. The different subtypes have very different stats however, though all are improving. Lung cancer is no longer the death sentence it once was. The most commonly cited statistic for understanding cancer lethality is 5-year survival rate. This immediately should raise a concern – 5-year survival rates by definition must be backward-looking, as they are calculated using vast amounts of data at least 5 years old. So, they do not take into account the most recent advances in treatment, which have been quite dramatic, especially for the adenocarcinoma and squamous cell subtypes of NSCLC. Moreover, survival rates are not predictive even for people with the same stage of cancer for a number of reasons. Among these: RESOURCES: Dayen, Debieuvre, Molinier et al. Journal of Thoracic Disease (Dec. 2017) v.9(12)., Maneenil, Molina, She et al. Journal of Thoracic Oncology (Jan. 2017) v.12(1)., Jacoulet, Depierre, Moro et al. Ann Oncol (Oct. 1997) v.8(10). Xia, Yu, Mao et al. Onco. Targets Ther. (2017) v.10., and
Lung cancer across all subtypes has long been a grim disease, with a poor prognosis and short survival times relative to other types of cancer. However, this is changing with rapid advancements in treatments and symptom management. Furthermore, all of the statistics have numerous caveats which limit their applicability to individual cases and make interpreting them a challenge.
What is undeniable is lung cancer is a very dangerous disease with a high risk of mortality. The different subtypes have very different stats however, though all are improving. Lung cancer is no longer the death sentence it once was.
The most commonly cited statistic for understanding cancer lethality is 5-year survival rate. This immediately should raise a concern – 5-year survival rates by definition must be backward-looking, as they are calculated using vast amounts of data at least 5 years old. So, they do not take into account the most recent advances in treatment, which have been quite dramatic, especially for the adenocarcinoma and squamous cell subtypes of NSCLC.
Moreover, survival rates are not predictive even for people with the same stage of cancer for a number of reasons. Among these:
Dayen, Debieuvre, Molinier et al. Journal of Thoracic Disease (Dec. 2017) v.9(12).,
Maneenil, Molina, She et al. Journal of Thoracic Oncology (Jan. 2017) v.12(1).,
Jacoulet, Depierre, Moro et al. Ann Oncol (Oct. 1997) v.8(10).
Xia, Yu, Mao et al. Onco. Targets Ther. (2017) v.10., and
17. LUNG CANCER: Prognosis and Reality Click here to Read More
Keeping in mind all of those caveats about which we spoke yesterday, in Topic #16 (“Lung Cancer: Understanding Your Prognosis”), here are the 5-year survival rates for the two main types of lung cancer from the American Cancer Society:
Non-Small Cell Lung Cancer (NSCLC) (average of all subtypes), 85-90% of lung cancers
- The 5-year survival rate for people with stage IA1 NSCLC is about 92%. For people with stage IA2 NSCLC, the 5-year survival rate is about 83%. For people with stage IA3 NSCLC, the 5-year survival rate is about 77%.
- The 5-year survival rate for people with stage IB NSCLC is about 68%.
- For stage IIA cancer, the 5-year survival rate is about 60%. For stage IIB cancer, the survival rate is about 53%.
- The 5-year survival rate for stage IIIA NSCLC is about 36%. For stage IIIB cancers the survival rate is about 26%. For stage IIIC cancers the survival rate is about 13%.
- NSCLC that has spread to other parts of the body is often hard to treat. The 5-year survival rate for stage IVA NSCLC is about 10%, and for stage IVB the 5-year survival rate is less than 1%. Still, there are often many treatment options available for people with these stages of cancer.
One key point is also subtype. Generally Adenocarcinoma (around 40% of lung cancers) has the best prognosis and most treatment options, followed by squamous cell (25-30%). Large-cell (10-15%) is the most lethal type of NSCLC, and it often behaves and is treated like SCLC. There are also a range hybrids or undifferentiated types (around 5%) which can have a spectrum of characteristics and outcomes.
Small Cell Lung Cancer (SCLC), 10-15% of lung cancers:
- The 5-year relative survival rate for people with stage I SCLC is about 31%.
- For stage II SCLC, the 5-year relative survival rate is about 19%.
- The 5-year relative survival rate for stage III SCLC is about 8%.
- SCLC that has spread to other parts of the body is often hard to treat. Stage IV SCLC has a relative 5-year survival rate of about 2%. Still, there are often treatment options available for people with this stage of cancer.
For SCLC, it is important to understand that there is some debate about staging, with some doctors believing that the stage I-IV method is not applicable and simply divide patients into those with cancer limited to the lungs (limited) vs. that which has spread to other sites (extensive).
In addition, immunotherapy has only been proven to be effective in treating SCLC in the last couple of years, and 2018 broke new ground as the FDA changed the standard of care for the first time in decades to incorporate it. Therefore, none of that would be captured by these statistics.
Finally, one very important indicator of a patient’s prognosis is his/her response to chemotherapy, which is the most effective treatment for SCLC. People with chemo-sensitive SCLC, particularly those with a complete response (i.e. they achieve a “No Evidence of Disease” / NED state), have a better prognosis. Likewise, while SCLC almost always returns, the longer the period of NED the better the prognosis, as the same treatment will be more likely to be effective at keeping the cancer at bay a second time.
Dayen, Debieuvre, Molinier et al. Journal of Thoracic Disease (Dec. 2017) v.9(12).,
Maneenil, Molina, She et al. Journal of Thoracic Oncology (Jan. 2017) v.12(1).,
Jacoulet, Depierre, Moro et al. Ann Oncol (Oct. 1997) v.8(10).
Xia, Yu, Mao et al. Onco. Targets Ther. (2017) v.10., and
18 “SYNDROMES” ASSOCIATED WITH LUNG CANCER Click here to Read More
In addition to causing symptoms, some lung cancers can cause “syndromes”, or groups of very specific symptoms. Among these are Horner Syndrome, Superior Vena Cava Syndrome, and Paraneoplastic Syndromes. Let’s take a closer look at each type.
Horner Syndrome: Affecting the nerves of the eye and face on the same side of the body, some cancers located toward the top part of the lung can sometimes cause drooping of an eyelid, a smaller pupil, reduced sweating, or even shoulder pain.
Superior Vena Cava Syndrome: The SVC (Superior Vena Cava) circulates blood from distant places in the body, such as the head and arms, back to your heart. Tumors can push on this vein and cause blood to pool in areas of the veins, leading to a variety of symptoms. Edema (swelling due to an overabundance of fluids collecting in the area) of the arms, neck or face, shortness of breath, swallowing difficulties and wheezing are common symptoms of this syndrome.
Paraneoplastic Syndromes: As if the signs and symptoms of most lung cancers weren’t already common enough to frequently be attributed to other illnesses, here come the paraneoplastic syndromes to potentially confuse diagnosis even more.
Some lung cancers secrete substances that travel to distant tissues and organs and act like hormones, even though there is not cancer located in that area. It is theorized that the body’s own immune system is attacking its own cells, trying to create antibodies to attack existing cancerous cells in the body. The syndrome is the sign of the underlying disease. There are several types of paraneoplastic syndromes:
- SIADH (Syndrome of Inappropriate Anti-diuretic Hormone) might be identified when the salt level in the body is lowered because the kidneys are retaining water. Fatigue, cramps or weakness of muscles, loss of appetite, restlessness, nausea and vomiting, and confusion may occur.
- Hypercalcemia (high levels of calcium in the blood) may cause excessive thirst, constipation, abdominal pain, frequent urination, dizziness, and other nervous system problems.
- Cushing Syndrome can be characterized by symptoms such as weight gain (particularly in the face (‘moon face’) and at the base and back of the neck (‘buffalo hump’)), muscle weakness, fluid retention, high blood pressure, and sometimes even diabetes and high blood sugar.
- Nervous System Problems are rare and important disorders which can cause a variety of symptoms if the body’s own immune system attacks the nervous system: Loss of balance and possible difficulty swallowing or speaking (paraneoplastic cerebellar degeneration), hip muscle weakness (Lambert-Eaton syndrome), and blood clotting concerns (Trousseau’s Sign, or Syndrome) are all examples. Various organ functions including neurologic, dermatologic (skin), endocrine (hormone), rheumatologic (joints), hematologic (blood), and ophthalmologic (eye) symptoms/syndromes may be impaired.
- Blood clots, painful thickening of certain bones (such as fingertips), and excess breast growth in men (gynecomastia) can also occur.
Sometimes identifying these symptoms is the first thing to alert the patient and doctor that there is underlying lung cancer; sometimes symptoms mimic those of metastasis (spread of the cancer to other organs or tissues), or even resemble side effects from treatment (namely neuropathy (tingling in limbs) and changes to the nervous system, such as balance and coordination, or muscle use). Diagnosing and treating the syndrome itself may affect overall clinical outcomes for the better.
19. CAUSES & CORRELATIONS – What are the Risk Factors for Lung Cancer? Click here to Read More
Scientists appreciate the causation vs correlation debate. Are you familiar with it? In a nutshell, and in relationship to Lung Cancer, it is a logical argument to decipher what directly and absolutely leads to lung cancer (cause and effect) and simply a relationship of things that are shown to be present in high frequency in patients with lung cancer (correlation).
Citing herein, but not having personally spent the years conducting and vouching for the actual studies myself, a majority of providers and researchers in the healthcare arena view the following at least correlative if not causative risk factors that increase your chances of getting Lung Cancer:
- Smoking: Statistics vary slightly depending on the study and average that around 85 to 90% of patients with lung cancer smoke; among those that smoke 2 or more packs per day chances of developing lung cancer change from 1 in 16 to 1 in 7; people who quit 10 years ago have lowered risk, and higher risk than those who have never smoked; 10% of smokers develop lung cancer; smokers who take beta-carotene supplements have been shown to have increased risk. The lack of long-term research availability regarding the relatively new e-cigarettes is evident, but studies are underway to research the short- and longer-term effects; preliminary studies show significantly reduced, yet still existent, risk. There are hundreds of studies available in google-land for you, each studying varying aspects of the relationship of smoking and lung cancer – dive in and research if you’re a smoker and learn if you can lower your risk.
- Radon: A naturally occurring radioactive gas from the earth which can accumulate and become concentrated indoors, radon is said to be the second leading cause of lung cancer.
- Asbestos: Bundles of naturally occurring fibers that resist fire and heat, asbestos used to be used extensively in electrical insulation, wiring, building insulation, and some cement pipes. Therefore the substance can be inhaled, or swallowed. It is also found in the outdoors, particularly in rocky regions. Regulations have minimized or eliminated use in industry and building in some parts of the world.
- Other airborne and ingestible factors: Other carcinogens found in the air may also increase the risk for lung cancer, including diesel exhaust, inhaled chemicals such as arsenic, coal products, and nickel compounds, radioactive ores such as uranium, and more. Arsenic in drinking water remains an increased concern in areas of the world such as South America and Southeast Asia.
- Family and Personal History: While not definitive regarding how shared environments and/or genetics play a role, siblings and children of people with lung cancer seem to have a slightly higher incidence of lung cancer diagnosis in their lifetime. People having had one lung cancer have an increased risk of developing a second lung cancer. People having had radiation to the chest (for example, to treat breast cancer or Hodgkins Lymphoma) show higher rates of disease, as well.
- Diet and exercise: Clinical trials are ongoing and thus far, that I could find, have not been conclusive that changes in diet and exercise have correlation on the incidence of disease, and/or its role in treatment and health outcomes. That said, prognosis is statistically slightly prolonged with those patients of younger years and who have fewer or less severe co-morbidities in their general health when diagnosed.
Stigma (“a mark of disgrace or inferiority associated with a particular circumstance, quality, or person”): A lung cancer diagnosis often carries an incredibly strong stigma of blame and shame. The American Lung Association (ALA) states that “poorer health outcomes are associated with lung cancer than other cancers partially due to shame, biases and judgment. This can lead to subsequent avoidance or delays in seeking treatment, lack of illness disclosure, relationship conflicts, a reduction is social support, lower quality of care, etc.” We don’t treat breast cancer patients with the enacted disdain of ‘having brought it on themselves’, yet the effects on the medical and financial arenas of the choice to smoke are also palpable. There are a lot of facets to this disease and stigma. “Exposure to people with lung cancer and those who love them humanizes the disease” says a lung cancer stakeholder via the ALA. “Research shows stigma appears to be experienced more by lung cancer patients than by other patient groups; and more by smokers compared to nonsmokers. Fear of being denied treatment, concealment of their condition and psychosocial distress such as anxiety, depression and isolation are all negative impacts of stigma that affect lung cancer patients”, quotes the American Lung Association in their document Addressing the Stigma of Lung Cancer. My personal hope is that education, individual motivation and responsibility for that which we can change, and empathy will help each other through this insidious disease.
20. SUPPORT OPTIONS ~ Education and Interpersonal: Click here to Read More
With so much of the focus rightfully on medical care for the disease, lung cancer is a psychologically traumatic event for the patient as well as the family, friends and caregivers. Indeed, it is a disease from which everyone involved suffers, and hence psychological, emotional and practical support can all be critical parts of coping. When faced with this diagnosis, your needs can range from more information on treatment options and what to expect to help with chores to just having someone to talk to. Luckily, the need for support beyond medical care is now well understood, and there are a plethora of groups involved.
Support can take a number of different forms: online and in-person and geared toward caregivers / family, survivorship / patients and grieving / bereavement. There are lung cancer-focused, general lung disease or general cancer resources. Chances are if you have a specific question or need, you can find help somewhere nowadays.
Below is a listing of some of the major organizations and support available. This is by no means exhaustive, but these organization have national or international networks, a range of services and partnerships with local organizations and treatment centers.
• American Cancer Society (www.cancer.org) – The gold standard in cancer support, their website is the most comprehensive and easily digestible compendium of information on all types of cancer. They maintain a huge web of up-to-date listings for all sorts of cancer groups and in-person resources, including everything from lodging for people who need to travel for treatments, men groups, wig programs, kids groups – something for just about everyone. See here: https://www.cancer.org/about-us.html. They also maintain a helpline and an online support group via www.whatnext.com.
• American Lung Association – A national advocacy group specializing in all sorts of lung diseases. In addition to their advocacy, they maintain online education resources, an online support community at www.inspire.com as well as a network of groups called the Better Breathers Club which focuses on practical support and lifestyle changes. They also maintain a support hotline.
• The Cancer Support Community (https://www.cancersupportcommunity.org/) – Formed by a merger of Gilda’s Club and The Wellness Community in 2009, they maintain a network of 175 locations worldwide and recently merged with mylifeline.org to provide online support. A general cancer support organization, they offer a hotline, in-person one-on-one group and individual counseling for patients, caregivers and bereavement.
• LUNGevity (https://lungevity.org/) – Focused specifically on lung cancer, this organization provides a number of services to patients and caregivers, including online support communities, Facebook groups, individual peer-to-peer support, a hotline and survivorship summits and conferences. They also maintain quite a comprehensive list of support organizations with whom they partner: https://lungevity.org/about-us/strategic-collaborations-and-partnerships
• Lung Cancer Alliance (https://lungcanceralliance.org) – A major national advocacy group which offers in-person, online and phone peer-to-peer support for caregivers, patients and grievers. They also maintain partnerships with hundreds of treatment centers across the country (https://lungcanceralliance.org/resources-and-support/support-groups/) as well as a helpline.
- Bonnie J. Addario Lung Cancer Foundation (https://lungcancerfoundation.org) – Formed to empower and educate, fund cutting edge research, and raise awareness. Their materials and support staff help point patients and families to education, clinical trials, research fundraisers, and interpersonal connections.
• Your local hospital or cancer center – Many of these have support groups for patients and caregivers. Check with your doctor or support team!
- Cancer drug companies – Unbeknownst to many people, the drug companies actually have a variety of programs to provide free or discounted experimental or yet-to-be-approved drugs that your insurance programs may not cover. Many people have gotten access to life-saving immunotherapies this way.
• …And yes, even your Social Media outlets have support groups! From information sharing and interpersonal support form other patients – and families – in your shoes, these groups may focus on treatment options, end-of-life care needs, religious/spiritual support, clinical trials, personal blogs and pages, etc, and there are a variety of groups for both patients and caregivers across social media channels. Many can be emotionally based, not scientifically based; some pedal products, and some are most definitely quackeries. Do your research! Here’s to YOU getting the support you need!
21. PATIENT ADVOCACY – Listening, Learning & Supporting Click here to Read More
So what does “advocacy” mean in layman’s terms? An advocate is someone who listens to all information available and makes a decision based on that information. This may be in relation to themselves, a cause that they are promoting, or on behalf of another. In relationship to health care, a patient is an advocate for himself – he hears, reads, learns and studies available information, processes it, and makes a decision for himself regarding how to proceed. Sometimes, the patient needs or wants some help. The information available might be beyond their scope of understanding. It may feel overwhelming in the presence of his fear about his diagnosis, prognosis, and treatment options. He may have concern that his wishes are contrary to his family’s wishes. He may be in a physical or mental state where he is literally unable to process and discern information, or to verbalize his desires. He may be afraid to speak up in the presence of ‘authority’ of medical professionals, or family, who recommend something that he really does not want for himself. In these cases, a caring and trusted advocate may be able to step in to help the patient navigate his health care journey and decisions in the various stages, from a new diagnosis through end-of life care. Many types of advocacy exist: RESOURCES: JRSM (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539473/ ), https://www.nia.nih.gov/health/doctors-appointments-tips-caregivers, http://www.ncfdadvocate.org.uk/index.php/services/different-types-of-advocay, https://www.cphins.com/patient-advocacy-is-an-ethical-and-legal-duty/, and https://www.hopkinsmedicine.org/health/healthy_aging/caregiver_resources/the-power-of-a-health-care-advocate
Advocacy = “public support for a particular policy or cause; the act of supporting a cause or proposal; intercession.”
A caring and trusted advocate is “in your corner” and acting in your best interest.
So what does “advocacy” mean in layman’s terms? An advocate is someone who listens to all information available and makes a decision based on that information. This may be in relation to themselves, a cause that they are promoting, or on behalf of another.
In relationship to health care, a patient is an advocate for himself – he hears, reads, learns and studies available information, processes it, and makes a decision for himself regarding how to proceed.
Sometimes, the patient needs or wants some help. The information available might be beyond their scope of understanding. It may feel overwhelming in the presence of his fear about his diagnosis, prognosis, and treatment options. He may have concern that his wishes are contrary to his family’s wishes. He may be in a physical or mental state where he is literally unable to process and discern information, or to verbalize his desires. He may be afraid to speak up in the presence of ‘authority’ of medical professionals, or family, who recommend something that he really does not want for himself.
In these cases, a caring and trusted advocate may be able to step in to help the patient navigate his health care journey and decisions in the various stages, from a new diagnosis through end-of life care.
Many types of advocacy exist:
RESOURCES: JRSM (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC539473/ ),
https://www.nia.nih.gov/health/doctors-appointments-tips-caregivers, http://www.ncfdadvocate.org.uk/index.php/services/different-types-of-advocay, https://www.cphins.com/patient-advocacy-is-an-ethical-and-legal-duty/, and https://www.hopkinsmedicine.org/health/healthy_aging/caregiver_resources/the-power-of-a-health-care-advocate
“You have Lung Cancer.” Words no one wants to hear. Your world might feel disrupted, overwhelming or lonely. You may be angry, frightened or sad. How will you tell the ones you love, your friends and co-workers? How will you help them through this, and how will they help you? What will your conversation with your children, or parents, be like? …And when?
Thinking ahead about how much you want to share, and with whom, will help you plan your conversations. Do you want to speak with that person alone, or in a group? Will you bring your partner, friend, or advocate to support you and help answer questions?
Setting the tone for each conversation, in advance, may help you feel in control. People tend to mirror others: your tone of voice, reassurance or discomfort, positive or negative outlook, calm demeanor or anxiety, and all the ways that you communicate with your words and body language will set the tone for how you want others to act around you. You may feel comfortable showing much emotion around some, and be stoic around others. Maybe you find certain topics to be ‘trigger points’ for your emotions and you prefer to not discuss those topics with certain people. You may choose to have a loved one tell your extended family, or wait until you know more about your prognosis, treatment plans, and realistic care needs before telling your co-workers. It is okay to answer questions with ‘I don’t know the answer to that question yet, but I will try to find out’, or ‘I’d prefer not to talk about that yet; may we talk about something else’? It’s your cancer, your body, and your life – how and how much you tell people is your choice!
Telling children can be especially daunting. Using accurate and age appropriate words is important, and you might be surprised at the literal and very direct questions they ask in response! Reassurance is not the same as being untruthful about your prognosis; it is a way to instil confidence and help someone feel less worried. Your honest reassurance about your love for them, changing routines, types of therapies, why your hair is falling out, etc. will let them know that even though things in the family might change, your love for them never will.
People will want to help – considering what kind of support you think you will need, in advance, can rally individuals to help meet your needs. Might you need transportation to radiation therapy, two casseroles each week so you can focus on playing with your children instead of being in the kitchen, or a supportive hand at church? Do you want a ‘chemo buddy’ to help pass the hours on chemo days, or might you want to sleep or do sudokus? Can your young children help you with age-appropriate tasks such as bringing a lap blanket to you? Do you want people to call, stop in, and write, or do you want to take some time to yourself and reach out to them when you are ready? Can a friend be your walking partner, or get the groceries on your list? Do you need a friend’s shoulder to help get you through a teary 2am moment of fear for your future? …You may not even know what you need yet, and your needs may change over the course of your cancer journey. Ask for help when you need it, specifically and directly. My guess is that people will flock to provide. 🙂
There appear to be certain common elements to the way most of us grieve. This can be comforting to recognize that what we are feeling is ‘normal’ when in comparison with other people’s journey, though often excruciating to actually endure.
Many of us will recall Elizabeth Kubler-Ross’s work from our school days. Learning about the ‘Stages of Grief”, or DABDA as I recall the acronym from 8th grade, I was able to relate the cycle of “Denial – Anger – Bargaining – Depression – and Acceptance” to many of my losses as a youth and as an adult. Beyond my grandfather dying, I could even place my emotions on this grief cycle after a set-back on my academic path, when a pet died, when I got divorced and after I failed a business!
Not always a linear journey moving from denial to acceptance in a sequential order, I’ve personally found that it feels more like a dance. One step forward, two steps back. It is sometimes frustrating to move through a certain stage, feel accomplished that I’m nearing the end goal, then have a set-back and feel the need to readdress a challenge I thought I had already worked through two stages ago… Have you ever felt like this after a loss?
In addition to STAGES, there are also TYPES of grief. Have you ever mourned the loss of a person and that person hasn’t even died yet? Called “anticipatory grief”, this is actually quite common in the face of a ‘terminal’ prognosis, meaning that the doctor has said ‘we cannot cure you (or your loved one); you will die of this disease but we will help you be comfortable’. Mourning the pending absence of their giggle, your heartfelt conversations, sharing of birthday celebrations, or that they won’t be there for their grandson’s graduation are all forms of anticipatory grief.
Lung cancer patients, and their families, may also feel a sense of “disenfranchised grief”. Due to the frequently felt stigma of people’s perceptions being that lung cancer has to be caused by decades of smoking and that the patient ‘brought it on himself’, patients and families frequently feel like their loss or pending loss is insignificant or not validated. People dealing with the aftermath of other stigmatized deaths (suicide, HIV/AIDS, overdose, miscarriage, for example), or people somehow removed from the patient (ie: a grandparent, an ex-spouse, a co-worker, a same-sex partner, etc) might also feel as though the very real pain that they are experiencing is not recognized as significant and valid by others.
When one loss is piled on top of other losses, we can experience “cumulative grief”, as well. Have you suffered a second loss before you felt like you were finished grieving the first? Do bad things seems to be coming in 3s for you, as the saying goes? Have you lost a relationship with your in-laws or grandchildren when your adult child died, and this is compounding your grief you feel for the death of your child? Grief overload can take you to overwhelming and debilitating depths of emotional turmoil if you are unable to move through the normal processes of grief.
I just love this meme I came across last week (original source unknown):
Experiencing grief after loss is normal. Acknowledging your grief and making the time and effort to ‘recognize and work through it’ are seen as important pieces of the healing process. The blog and healing information found on the website WYG.com (What’s Your Grief) is exceptional, in my opinion ~ you may just see yourself in the heartfeltfully produced educational pieces, touching words, and the personal stories likely oddly similar to yours. I hope that someday you will again smile and find joy again in your memories rather than the overwhelming sense of loss that you may currently be feeling. Here’s to YOU!
RESOURCES: https://whatsyourgrief.com/types-of-grief/, https://whatsyourgrief.com/, https://whatsyourgrief.com/anticipatory-grief/, https://whatsyourgrief.com/disenfranchised-grief/, https://whatsyourgrief.com/cumulative-grief-aka-grief-overload/, https://study.com/academy/lesson/what-are-the-stages-of-dying-overview-of-kubbler-rosss-5-stages.html, https://www.google.com/imgres?imgurl=https://dz9yg0snnohlc.cloudfront.net/new-understanding-the-stages-of-grief-1.png&imgrefurl=https://www.betterhelp.com/advice/grief/understanding-the-stages-of-grief/&h=901&w=1200&tbnid=-2PKlB5kOgoUmM:&q=7+stages+of+grief&tbnh=160&tbnw=213&usg=AI4_-kS01G-3xzI_UivEyN22bDbawzH8TQ&vet=12ahUKEwj1yrSx99veAhWjSt8KHcsQDCsQ9QEwAHoECAUQBg..i&docid=0nByPD4LdWbqIM&sa=X&ved=2ahUKEwj1yrSx99veAhWjSt8KHcsQDCsQ9QEwAHoECAUQBg, https://www.betterhelp.com/advice/grief/understanding-the-stages-of-grief/, and https://www.recover-from-grief.com/7-stages-of-grief.html
Should I get a second opinion?
If diagnosed with lung cancer, you or your loved one may want a second opinion. This may be because you desire verification of your diagnosis to believe this is actually happening, or to gain the confidence in confirming that you are on the right treatment path. You may want a second opinion because you and your doctor are not communication well, you feel as though you cannot ask questions openly about your care, or that your doctor is not up to date on current testing or treatment options. You may want to seek out experts who specialize in various areas of oncology and adjunct therapies or those who know more about a certain treatment path such as clinical trials. Your health insurance company may even require it.
Choosing to get a second opinion might feel uncomfortable or confrontational, yet your oncologist will likely expect that you will get a second set of experienced eyes to review your care. She will (hopefully) be glad to have your confidence in either the corroboration of her diagnosis and treatment plan, or will be open to the concept of emerging treatments she might not yet be comfortable with or have available at her facility. This is YOUR body, your life, and your treatment plan ~ and you have the right to be your own best advocate for your needs.
I appreciate these conversation starters offered by LungCancer.org:
- “I respect your opinion and I would like to speak with one other expert before starting your recommended treatment. How can I proceed?”
- “I need the reassurance of a second opinion and I’d like to talk with another doctor to be sure. What is the next step?”
- “This is all so new to me and I feel that a second opinion could help me give me clarity.”
What exactly is a Tumor Board?
When a group of cancer treatment specialists come together to review diagnostic tests and the best possible course of treatment for a particular patient, this is called a Tumor Board. This interdisciplinary group may consist of medical oncologists, radiation oncologists, surgical oncologists, etc. They are coming together to examine the course that the lung cancer is taking in your body and proposing and evaluating the best possible care options in your best interest.
Concurrently, the process keeps the specialists’ knowledge base high as they learn from each other about emerging therapies, diagnostics and possibly unconventional treatment plans. They may likely receive group consensus about best standards of care to follow for your particular treatment plan.
Particularly if you have a rare type of cancer, a scientifically intriguing metastasis that other medical professionals can learn about or for which another specialist might be able to provide insight, or if your cancer or symptoms fall outside the ‘norm’ of the statistical nature of your disease process, these specialists will actually revel in learning more and helping you in your cancer journey even though you may never personally meet!
RESOURCES: https://www.lung.org/lung-health-and-diseases/lung-disease-lookup/lung-cancer/patients/treatment/decide-on-a-treatment/second-opinion.html, https://www.lungcancer.org/find_information/publications/264-when_to_get_a_second_opinion, https://www.cancer.gov/publications/dictionaries/cancer-terms/def/tumor-board-review, and https://www.interventionaloncology360.com/article/four-tips-optimizing-tumor-board-participation
25. LUNG CANCER ADVICE: “Seeking Trusted Information Sources” and “Advice From Well-Meaning Friends” Click here to Read More
How do I know if I should trust this information?
You are likely feeling bombarded with medical advice about your lung cancer right now. I’m sure you’ve seen the commercial about the happy family whose grandpa is living longer because of the great new drug the company is offering. You’ve researched webMD and wikipedia to help confirm that your symptoms are ‘normal’ and that your doctor has you on the right treatment plan. You’ve found a podcast created by the patient who was diagnosed 14 years ago who decided to go to Mexico for treatment and now swears that almonds prevent cancer. WHAT INFORMATION WILL YOU TRUST, and WHY?
Studies such as this JMIR report suggest that “website design, clear layout, interactive features, and the authority of the owner have a positive effect on trust or credibility, whereas advertising has a negative effect. With regard to content features, authority of the author, ease of use, and content have a positive effect on trust or credibility formation. Demographic factors influencing trust formation are age, gender, and perceived health status.”
Does our susceptibility to trust a source as ‘credible’ vary by repetition, delivery and perceived ‘authority’? Does this trust (or mistrust) direct the way that you seek information and make subsequent decisions for your care? If so, what questions might you ask differently to help sort through the vast ocean of information available to find the best course of care for yourself?
Advice from Well-Meaning Friends:
Your cancer diagnosis may stir a variety of emotions in your family, friends and coworkers. Giving you advice might be one way they feel they can help you…
Your boss might send a vegetarian recipe which he is sure cured his ailing grandmother with “the exact same disease”, your friend from high school may send links to harrolded stories about the latest “plant medicine”-laced edibles sure to cure your cancer, and your mom might send ‘healing stones” for you to caress to take away your worries. The check-out clerk at your favorite grocery store recommends the latest vitamin she heard about, your pastor wants to organize a fundraiser for you, and your neighbor wants to clean out your pantry and replace every item with “cancer-curing” foods which you are sure will taste like cardboard. Your cousin send a text saying “you’ve gotta read this 400 page book about how peanut butter and nutmeg can cure your cancer!”
As if your diagnosis and treatment plan weren’t already feeling overwhelming enough, sorting through varied, questionable, only sometimes pertinent, and often unsolicited advice can feel daunting. Identifying YOUR goals and needs is important, yet is it now your role to discern and calm your friends’ fears, concerns, sympathies, guilt or regret? You know that they mean well. How can you BOTH get what you need?
- How you can help your friends: Know that YOU are in control of how much you say, to whom, and at what point. Speak openly about what, specifically, will be of help to you, IF you can identify it. Be honest about your needs and emotions with those you trust. Politely and firmly outline your wishes about unsolicited advice. You do not have an obligation to comfort your friends and family, yet knowing that they care and are trying to help in the ways they know how can help soften communication and relationships, however. And no, you will not be failing yourself or your loved one if you can’t read up on the latest 400 page article offered about the latest peanut-butter-and-nutmeg-cure; you are doing all you can to survive and thrive with the time, energy and sources as you see fit at the time. You do you, and have informed and well-placed confidence in yourself, your team, your trusted advisors and your decisions along the way.
- How your friends can help you: Your loved one with lung cancer may not be able to identify his or her needs. Very specific offers to pick up items on her grocery list, vacuum every Tuesday, take her daughter to ballet, driving her to chemo, fold laundry or walk her dog might be appreciated. Explore the city on a drive together, and stop for an ice cream cone at the place you loved when you were kids. Foster her independence ~ allowing her to pull up her own socks instead of doing it more quickly for her, encouraging her to walk at her own pace and to retrieving her own blanket from the closet not only can help her maintain mobility but will help her remain in control of some of her choices. Offer to be there for her family members – take a meal so her husband won’t need to cook after picking up an overtime shift, or support her son at his chess match. Send a card or call to ask if it’s a good day to swing by after work to share a hug, and respect her answer. Text again another day to let her know you still care, and be ready to follow up if she can identify a need that day. Know that sometimes a smile and a hug can improve an entire day, and sometimes she might prefer to be alone in her thoughts. Make the time to listen; truly listen as she shares her thoughts, fears, stories and feelings. Help her laugh! Though you have very real fears, sorrows and needs, in many ways this isn’t about you; it’s about her. She may feel that many things in her world are outside of her control; how might you help her feel in control of a certain choice? Work to remove your guilt or expectations, and BE with your friend in the ways that she needs you. I’d venture a bet that neither of you will look back and regret those moments.
26. HOW DO I PAY FOR LUNG CANCER TREATMENT? Click here to Read More
Medical debt can become staggeringly huge, quite quickly, with a lung cancer diagnosis. The subsequent stress that burden can create can overwhelm a family emotionally and financially.
What factors play a role in the staggering costs, particularly in the US? Who is at high risk of financial burden, and does this affect their quality of life and clinical outcome? Would your choice of treatment options change based on cost and the subsequent impact on your family’s future? Is there a price for life?
The National Cancer Institute’s Report on “Financial Toxicity and Cancer Treatment (PDQ®)–Health Professional Version”, outlines several risk factors for those patients and families most at risk of financial distress, including:
- “Wage-earner status of the household member affected by the cancer diagnosis, co-morbidities and general health of the affected, the influence of the illness and treatment on his ability to work, and the income of others in the household
- Pre-illness debt and assets
- Illness-associated costs
- The presence and terms of health care coverage
Patients and their families may be subsequently adversely affected by out-of-pocket medical costs, increased costs as a percentage of income, reduction of income and assets, medical debt, trouble paying for medical bills and for necessities (such as food, housing), and bankruptcy.”
The following chart was created by Scott Ramsey, MD, PhD as a visual aid for understanding some of the financial strain a family might endure with trying to keep up with treatment costs:
The report continues: “Components of these measures include material conditions that arise from increased out-of-pocket expenses, lower income from the inability to work, and psychological response to increased household expenses and reduced income.”
With the prevalence of rising pharmaceutical and diagnostic testing costs, private insurance companies disperse the burden to its payors by increasing premiums and out-of-pocket costs, in addition to increasing the charges directly to that family. Conversely, those in poverty who enter diagnosis without private health insurance are 100% covered financially through taxing other people to pay for their care; their income may decline even further if the affected member of the household is unable to work.
Patients on self-pay plans might have their bills reduced by 60% or more from what the care-facility charges an insurance company, though still a high burden when some estimate a $10,000+ per month out-of-pocket expenses for care. The intricacies of costs and payments are not as black and white as one might think. Being sick with lung cancer will likely mean that you work less and make less money. As your family stops vacationing, spends the money in your saved family emergency fund, then from other savings accounts, then takes a loan against the house and sells other assets to pay medical costs, stress is common.
Concerns regarding financial burdens can lead to a patient not adhering to his recommended course of treatment, such as not filling a prescribed medication in a timely manner or not going promptly for a diagnostic test, both of which can affect the clinical short- or long-term outcome for the patient. Some patients even make the choice to not treat their cancer at least partially for fear of wiping out their entire nest-egg and placing a lifelong financial burden on their family.
Navigating the world of private insurance, government coverage, and self-pay plans can be tricky on a day-to-day practical basis, too. How do you submit a claim? What documentation, referral paperwork, and care plan will you need? Will the pharmaceutical company cover your care if you participate in a clinical trial? Do you pay for the treatment, test or product when treated, or after settlement by the insurance company? Will you have enough money to complete your course of care if you start? Are there financial assistance programs available to help cover your treatment?
Some insurance companies, hospitals and oncology offices offer financial navigators, and some families choose a private advocate to help file necessary paperwork so they can focus on daily quality of life.
A variety of screening opportunities are also now available for some. Per the National Lung Screening Trial, a study found that low dose CT scans for those at high risk for lung cancer reduce the number of lung cancer deaths by 20 percent.
They go on: “The Centers for Medicare and Medicaid Services (CMS) decided low-dose CT will be reimbursed once a year for Medicare patients who are eligible for lung cancer screening. Patients must be ages 55 to 77, have at least a 30 pack per-year history of smoking, and currently smoke or have quit within the past 15 years.
Because lung screening is recommended by the US Preventive Services Task Force (USPSTF), private insurers have also begun covering the tests. However, the criteria for screening eligibility are slightly different. For example, USPSTF guidelines call for screening up to age 80.”
There are a variety of financial assistance options available, as well. Your major costs will be for things such as hospital and clinic visits, diagnostic tests, medicines, surgeries and procedures, home health and caregiving services, and the services of doctors and other professionals. Additional costs might add up for travel and short term housing near your treatment facility, caregiver expenses, and therapies and nutritional needs. The American Cancer Society, CancerCare, the Cancer Financial Assistance Coalition and Cancer.Net are but a few options within a myriad of resources that private individuals and foundations can help you meet your treatment goals financially. We hope that lessening a potential financial burden will create the opportunity to spend more quality time with your loved ones!
27. MANAGEMENT OF LUNG CANCER ~ pain, self-care, motivation, perspective and more… Click here to Read More
What is lung cancer pain REALLY like?
Well, it depends on the person, their cancer, their treatment, their tolerance and more! I know, you want a one-size fits-all answer, and I did too but there isn’t one. Everyone’s cancer is different – where it has spread and the subsequent symptoms will likely not be the same for you as they are for the patient in the chemo chair next you. Your general health and disease progression will make a difference. How you tolerate pain will likely be different and the intensity of your acute or chronic pain will make a difference is the ways you manage your pain.
People with lung cancer typically express that they feel physical pain in some form during their journey: shortness of breath, a feeling of ‘drowning’ in their own fluids or suffocation from not feeling as though they can catch their breath, unrelenting pain in the affected area, weakening of the body and muscle wasting, loss of balance and neurological concerns if it has spread to the brain. Additionally, bowel and bladder control issues can be present if it has spread to the spine or peritoneal (belly) area, sweating/fever and fluid accumulation in the belly if it has spread to the liver, etc. There are potential side effects of treatments, such as nausea/vomiting, bleeding, immune system depression and weakness with chemotherapy, the need for draining accumulating fluid, metabolism and thermoregulation changes which might come with prescribed steroids, feeling ‘loopy’, intensely tired or out of control with powerful pain medications, etc. It is important to evaluate these potential (or actual) side effects against feeling the physical symptoms of cancer, which is an ongoing process and choice for the patient and care team, and may change even dailly!
What is is like to have cancer?
Beyond potential pain and physical changes, people with lung cancer can feel a sense of urgency to experience items on their ‘bucket list’ and make memories and family decisions. They might feel a sense of depression, exclusion from gatherings, or fear pending loss (of independence, time or tender moments, for example). Self-care may suffer if they don’t recognize a need logically because of neurological changes; they may also simply loose this form of self-awareness, or develop a ‘why bother?’ attitude if they lose hope for a healthy future. Overwhelming anxiety may riddle the daily routine. Someone might experience ‘survivor’s guilt’, feeling a sense of “why did I make it through cancer and she didn’t?” The most motivated of businessmen might lose focus and dedication to his intellectual growth, and the staunch spiritual advocate may turn her back on God.
Concurrently, numerous people, patients and caregivers alike, have shared that they develop a sense of empowerment and/or peace at some point on their cancer journey. Resolving a lingering conflict with a family member or being able to communicate more directly without fear of reprisal or reprimand. Some feel that their ‘give-a-shit’ factor has diminished and they are more willing to try new things or speak their mind. 🙂 Some create and work to complete new ‘bucket list adventures’, and some hone in on family time and monopoly game moments. Some work to stay strong and share hope for emerging treatments on the horizon, some sit quietly being eternally optimistic, and some advocate to make a difference in the world with something they do or say, create or share. “Perspective: a particular attitude toward or way of regarding something; a point of view.” The feelings you feel and that others feel are rarely a straight path, here’s to you and however you deal with this beast in this moment!
28. QUESTIONS TO CONSIDER ASKING YOUR DOCTOR if you’ve been diagnosed with Lung Cancer Click here to Read More
Communicating with your health care team and trusted advisors is imperative when navigating the medical path of lung cancer. Knowledge can help us feel in control of our options and decisions and help us make informed choices. We can maintain hope and positive perspective while educating ourselves as well!
- What kind of lung cancer do I have? What does that mean?
- Where is the cancer located?
- Has it spread to other areas of my body?
- What ‘stage’ is my cancer in?
- May I get a copy of my scans and tests? How will I learn about future results?
- What is the likely outcome / prognosis (***Ask only IF you truly want to know!! … And tell your doctor and care team SPECIFICALLY that you do NOT want to know if you don’t!!***)
- What experience do you have treating this particular type of lung cancer?
- How do I reach you outside of office hours if there is an emergency?
- A second opinion would help me feel more comfortable with the treatment we are choosing; how do I go about that?
- How do I find out more about my type and stage of lung cancer, as well as my treatment options?
- Are there support groups and other helpful people who might be able to help me through this emotional journey, as well as to help navigate the medical side?
Considering Treatment and Your Future:
- What is the goal of my treatment? (To cure my cancer, to stabilize or slow its growth, or to lessen my symptoms? (“Curative” or “Palliative”?))
- What are my treatment options? What would you recommend for me, and why?
- How will we know that the treatment is working? Will I need special tests, and if so, what kind of tests, how frequently, and how much will they cost?
- Will my cancer come back after treatment? What happens then?
- May we consider genome/DNA testing to see if specific emerging therapies might work for me?
- Will I still be able to have children?
- Will my insurance cover treatment? How much will it cost?
- Will the medications and supplements I take for other illnesses affect my treatment?
- Where will treatment take place?
- When would you recommend that I start treatment?
- How long will each treatment session be? How many sessions will I have?
- Do I need to do anything specifically to prepare for treatment, or what I will feel like after treatment?
- What are the risks of each kind of treatment?
- How might treatment affect my lifestyle? (Work, energy, sex life, activities of daily living such as getting dressed and cooking; how will this affect my ‘spunk’…?)
- Will I need assistance to do my daily activities?
- How long will it take to recuperate?
- Will it hurt?
- Will I need to change my diet or lifestyle?
- Is there anything I can do personally to improve my condition and/or prognosis?
- What are the most common short-term and long-term side effects that you see with each treatment? How can I best manage them? Is there anything that might happen that I should call about right away?
- How are the side effects of treatment and symptoms of my cancer similar ~ and different? What can I expect from each?
- Will I lose my hair?
- Could a “palliative care specialist” help me manage my pain, symptoms and side effects, and emotional roller-coaster? What is the difference between palliative and Hospice care?
- Are there legal issues I need to consider, such as sharing in writing my medical wishes, who will make my decisions if I cannot, when/if someone should try to resuscitate me, etc? (Called “Advance Directives”: Living Will, Health Care Power of Attorney, etc)
- Should I consider a clinical trial? How would I find out about trials or studies? How would I apply?
- Will I have any limitations after treatment?
- How would I know if my cancer comes back? What should I watch for, and how will we follow up?
- Are emerging therapies and/or alternative therapies an option for me?
- Is there a chance that another treatment option will become available during this treatment?
- Will my family members have an increased likelihood of developing lung cancer?
- How would I decide to have, cancel or change treatment? Can I change my mind about any treatment and at any time?
- What would my quality of life and care be like if I chose to stop actively treating my cancer?
- What am I not asking that I should be???
GREAT NEWS ~ There are ways to share with your family, friends and health care team what YOU want for YOUR body!! Called “Advance Directives”, these documents legally and logically spell out, ahead of time, your desires for your treatment and care.
Health Care Power of Attorney (or Health Care Proxy): This document identifies the person that you would want to make health care decisions on your behalf if you cannot make those decisions on your own. This trusted person must be able to make decisions on your behalf under potentially highly stressful times and per YOUR desires, based on the information he or she knows at that time. Even if the person you designate has a different preference for your care, it is not about them; it is their role to ensure that YOUR wishes for your body and your treatment are being carried out by your health care team!
Living Will: Your Living Will provides the framework for your family and health care team to treat you in the way YOU desire per your wishes. Among other questions, it outlines under what circumstances you may or may not want to be resuscitated if your heart stops; would you want to have dialysis or be on a breathing machine if you organs or lungs aren’t working; do you want to be fed through a feeding tube if you can’t swallow? These parameters may be the same or may differ depending on the anticipated duration of your health issue. For example, do doctors think your condition will last a week and you’ll be back to the gym again if they can ‘just get you through this speed bump’, or that your condition is ‘terminal’ and that treatment would only extend your days and pain? What do you want your doctors to do if you are in a ‘persistent vegetative state’? The Living Will tells your family and doctors which treatment/s you do or don’t want if your life is threatened and you are unable to make decisions for yourself at that time.
Five Wishes Booklet: Able to be the legal document of your specific wishes in 42 states, the Five Wishes booklet can also be used concurrently with your other advance directives legal in your state. It is written in a clear and understandable way, opening the doors of communication for your and your loved ones and care team to discuss your wishes for your health care and, if needed, your end-of-life care. In addition to naming your Health Care Power of Attorney and your specific treatment desires in a Living Will in case you can’t verbalize your decision at any point, the booklet dives much deeper into other areas you may wish to discuss with those you love. What are your preferences for comfort, for example? Do you want frequent warm baths if they don’t cause you pain, do you desire pain medication even if it makes you very drowsy and unable to communicate, and would you like music playing in your room? What kind? How would you like people to treat you? Do you want an atmosphere with many people surrounding you in your room, or do you prefer to have only certain people sit with you and hold our hand in what might be your final hours? What are other wishes that you want your loved ones to know? Do you want them to feel joy instead of sorrow when they think of you? Do you have a specific place you would like your ashes to be spread? Do you have a song, poem or prayer that you would like to have said if someone has the privilege of holding your hand as you take your last breath? What do you want your funeral to be like, or do abhor the thought of a traditional funeral? The Five Wishes booklet is a great conversation starter and empowering way to share your wishes for YOUR care!
Advance Directives templates are available online and sometimes legalities do vary by state; you may like to have yours reviewed by a legal team, as well. You will keep a copy, give a copy to your loved ones and certainly the Health care Power of Attorney you name. Also give a copy to your health care providers, hospital, nursing home, etc. In some states, a separate “Do Not Resuscitate” (DNR order is required in addition to your Living Will, and a POLST (Physician Order for Life-Sustaining Treatment) document can help guide your doctors to care for you per your specific pre-designated wishes. You can change them at any time, so why not create yours today!? You are not promised tomorrow…
Regardless of the legalities as implemented by the government, these documents CAN serve as conversation starters, as well as holding people accountable to act in your best interest. What a lovely thing to know that you will be cared for per YOUR preferences!
- LUNG CANCER ~ 30 Days of Lung Cancer Facts in a Nutshell! Click here to Read More
There are 2 primary types of lung cancer:
- Small Cell Lung Carcinoma: 15% of all lung cancers, VERY aggressive, typically responds well to the first rounds of chemotherapy and radiation, typical life expectancy is 2-12 months without treatment and with treatment, respectively. Emerging therapies are being tried for this disease for the first time in decades!
- NON Small Cell Lung Carcinoma (includes Adenocarcinoma, Squamous cell lung cancer, Large cell lung cancer and very rare lung cancers): 85% of all lung cancers, typically not as aggressive as small cell, treatment tends to extend quality and quantity of life, and therapies such as immunotherapy and targeted therapy, emerging since 2014, show promise and good results, screwing the current 5-year statistics, which is great!
- ***It is so important to know your diagnosis because your treatment options and prognosis will be different based on which type of lung cancer you have!***
Lung Cancer kills more people each year than breast, prostate, colorectal and pancreatic cancers COMBINED. Stigma and symptoms commonly attributed to other illnesses (such as coughing, wheezing, etc) are some reasons why diagnosis might be delayed, resulting in most lung cancer being detected after it has already spread (metastasized). This decreases life expectancy. The number of younger people diagnosed with lung cancer has increased significantly in the last decades.
Smoking is not always the cause. Radon, chemicals in the air and water, family history and genetics are now thought to also cause or correlate with this disease. *****MY QUESTION REMAINS: IF 85-90% OF PATIENTS WITH LUNG CANCER HAVE SMOKED FOR DECADES, BUT ONLY 10% OF SMOKERS GET LUNG CANCER, ARE WE ASKING THE RIGHT QUESTIONS??*****
Chemotherapy, radiation, surgery, immunotherapy and targeted therapy are the ‘go-to’ medical treatments against lung cancer currently. Clinical trials are underway for pharmaceuticals and diagnostic testing for both types of lung cancer. Treatment depends on the stage of the cancer and where it has spread. Cancers’ symptoms and treatments’ side effects are not the same for everyone. Treatment has a goal: are they trying to cure it (curative), shrink/stabilize it, or lessen your pain/symptoms (palliative).
Your treatment choices are yours, and you can change your mind at any point. Advance Directives can help you identify the person/s who you would like to be your advocate if you cannot make a decision about your care, and will tell doctors the type of treatment and care you do or don’t want for your body.
You might have lung cancer, but you are not lung cancer. Your words and perspective matter. You matter. I encourage you to live intentionally ~ good gravy, shouldn’t we all?! We are not promised tomorrow!! …You are not alone in this journey; while a dangerous and potentially terrifying disease, you have a wealth of information available online, and support with your friends here at OddlyGrateful.com. Here’s to you!