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40, female, non-smoker, newly diagnosed with adenocarcinoma in lower left lung. This was an incidental finding back in August 2022 when I went to urgent care for an unrelated reason and the doctor saw a spot in my lung that wasn‘t there in an xray from 8 years ago. Followed up with a CT the next day and a referral to a pulmonologist. Nodule indeterminant 1.6cm. Had bloodwork to check for fungal infections and auto immune diseases that could cause lung nodules followed by PET scan when the bloodwork came back negative. Had an unsuccessful CT guided biopsy in September, finally had the repeat biopsy in January because I had pneumonia in November related to the first biopsy. Got the results the next day after the biopsy. Waiting to be scheduled for RATS lobectomy this month of February. Hoping it‘s not in any lymph nodes, but feeling very lucky it was found now and not later as I have no symptoms associated with lung cancer and am otherwise very healthy.
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Find A Cure Panel specializes in patient research for rare and serious disease and they have some current research for people and caregivers of people with Small Cell Lung Cancer (SCLC). To qualify for this research, you or your loved one with Small Cell Lung Cancer (SCLC): 1) Must have a diagnosis with Small Cell Lung Cancer (SCLC). 2) Be over 50 years old. 3) Have EXTENSIVE SCLC. Sometimes referred to as stage 3, stage 4 or metastatic SCLC. 4) Must have some experience with smoking. If you/your loved one NEVER SMOKED then you won’t qualify, unfortunately. 5) If you are a caregiver, you must be knowledgeable about your loved one’s condition and treatment. 6) If you are a caregiver who recently lost your loved one with SCLC, you can still participate if you lost your loved one in the last 12 months. It is easy to participate in. It’s one confidential and anonymous phone call with one moderator talking about your experience with Small Cell Lung Cancer (SCLC). If you are interested in participating, please contact FACP at info@findacurepanel.com and reference FACP/SCLC
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LUNGevity Foundation has launched Patient FoRCe, the first-ever critical bridge to connect the voices of lung cancer patients — a significant population — with health care professionals, regulators, policymakers, and developers of drugs. “Lung cancer is the #1 cancer killer, taking the lives of 157,000 Americans every year. LUNGevity is leading the way in changing the paradigm of cancer treatment ─ from assuming patient wishes to evidence-based conclusions about what patients value,” said LUNGevity Chairman Andrea Stern Ferris. “Through Patient FoRCe, lung cancer patient voices will be heard and heeded as policy is developed, research is conducted, and treatment decisions are made.” Patient FoRCe, LUNGevity’s Patient-Focused Research Center, will undertake never-before studies of those living with lung cancer, collecting and sharing robust qualitative and quantitative data about lung cancer patients’ preferences and experiences to inform treatment, as well as relevant policy and research protocols. Patient FoRCe’s immediate focus will include continuing a study of patient preferences and experiences regarding access to care, treatment and diagnostic options, and the impact of symptoms on daily living, as well as conducting studies to facilitate patients’ access to biomarker testing, which is essential to implementing precision medicine. Patient FoRCe will also initiate a study into increasing adherence to lung cancer screening protocols for people at high risk for lung cancer. Additional projects will be based on stakeholder input and the guidance of an external advisory board of survivors, academic and community clinicians, industry partners, patient advocacy groups, and community partners. LUNGevity formally announced Patient FoRCe at the American Association for Cancer Research’s 2017 Annual Meeting in Washington, DC, on Sunday, April 2. Andrea Stern Ferris spoke to the urgency of the initiative, saying, “For too long, public policy, the practice of medicine, and drug development have not adequately integrated the viewpoint of patients. LUNGevity is determined to change that paradigm. By incorporating the patient’s voice into every step of the process – in policymaking, in trials, in treatments – we will improve outcomes for those diagnosed with lung cancer.” “Our goal is to uncover gaps in information, misperceptions about patient attitudes, and areas of unmet patient need,” explained Dr. Upal Basu Roy, Director of Patient FoRCe. “LUNGevity is the only organization driving this type of change for the lung cancer community, and we anticipate that our findings will shape the future of lung cancer care.” For more information about Patient FoRCe, visit www.LUNGevity.org/patientforce. Click here to read the full press release. -
What Not to Say to a Cancer Patient By: Jane E. Brody What do you think is the most commonly asked question of a person who has, or has had, cancer? If you guessed, “How are you?” you got it right. But as caring as those words may seem, they are often not helpful and may even be harmful. At a celebratory family gathering a year after my own cancer treatment, a distant relative asked me just that. I answered, “I’m fine.” She then pressed, “How are you really?” “Really” I was fine, I told her. But what if I hadn’t been? Would I have wanted to launch into a description of bad medical news at what was supposed to be a fun event? Would I have wanted even to be reminded of a bout with cancer? Although my relative undoubtedly meant well, the way her concern was expressed struck me as intrusive. A diagnosis of cancer can tie the tongues of friends and family members or prompt them to utter inappropriate, albeit well-meaning, comments. Some who don’t know what to say simply avoid the cancer patient altogether, an act that can be more painful than if they said or did the wrong thing. A new book, “Loving, Supporting, and Caring for the Cancer Patient,” by a man who has been treated for a potentially life-threatening cancer and who has counseled dozens of others dealing with this disease, got me thinking about the best ways to talk with someone facing cancer — its diagnosis, treatment and aftermath. The book’s author, Stan Goldberg, happens to be a communications specialist, a professor emeritus of communicative disorders at San Francisco State University. Dr. Goldberg learned at age 57 that he had an aggressive form of prostate cancer. He said in an interview that cancer patients too often encounter people who assume the role of cheerleader, saying things like “Don’t worry about it,” “You’ll be fine,” “We’ll battle this together,” “They’ll find a cure.” However, he observed, “Words of optimism may work in the short run, but in the long run they can induce guilt if the cancer is more virulent and defeats a person’s best effort. “I was dealing with the possibility that my life would end shortly, or if it didn’t, it would be changed dramatically. False optimism devalued what was going on in my body. People were insensitive not from a lack of compassion but from not knowing what is really helpful.” What he and those he’s counseled have found to be most helpful were not words but actions, not “Let me know what I can do to help,” which places the burden on the patient, but “I’ll be bringing dinner for your family this week. What day is best for you?” As a self-described “independent cuss” reluctant to ask anyone for help, Dr. Goldberg said his son taught him this important lesson. “He came to my house during my recovery from surgery and said ‘Stop lifting those boxes, Dad. I’ll do it for you.’” Another author of very helpful books on living with cancer is Dr. Wendy Schlessel Harpham, who has had a recurring cancer for more than two decades. She suggests that people offer specific ways they can help. For example, they may say they can shop for groceries, care for children, take the dog for a run, or accompany the patient to the doctor, and then be sure to follow through with the offer. Many people now use online sites like caringbridge.org to keep people up to date on their health and needs or organizing platforms such as mealtrain.com or lotsahelpinghands.com to ask for specific help. Dr. Harpham said she came to dread the query “How are you?” because “no matter how it was intended, being asked ‘How are you?’ rattled my heightened sense of vulnerability. I found myself consoling those who asked and then fighting the contagion of grief and fear. Even when the news was good, I didn’t have the energy to include all the people who wanted updates.” Dr. Goldberg suggests that when visiting a cancer patient, people talk less and listen more. ”Often the greatest support comes from silently witnessing what a person with cancer is experiencing,” he wrote. “Sometimes only a calm presence and compassionate listening are necessary. Silence becomes the breathing space in which people living with cancer can begin difficult conversations.” In an article in Prevention magazine, Melissa Fiorenza offered this helpful suggestion for what to say to someone you deeply care for: “Feel free to cry with me, to talk, or not to talk. I’ll take my lead from you.” When talking, Dr. Goldberg suggested, “engage more in conversations and less in question-and-answer interactions.” But if questions are asked, they should be open-ended ones like “Do you want to tell me about your cancer and what you’re going through? Maybe I can find ways to be helpful.” Among the many suggested “don’ts” are these: • Don’t make light of a patient’s physical changes by saying things like “At least you finally lost those extra pounds.” • Don’t talk about other patients with similar cancers, even if they fared well — no two cancers are alike. It’s fine, though, to ask if the patient would like to talk with someone else who’s been through it. • Don’t say the patient is lucky to have one kind of cancer rather than another, which downplays what the person is going through. There’s nothing lucky about having cancer even if it’s a “good” cancer. • Don’t say “I know how you feel” because you can’t possibly know. Better to ask, “Do you want to talk about how you feel, how having cancer is affecting you?” • Don’t offer information about unproven treatments or referrals to doctors with questionable credentials. • Don’t suggest that the person’s lifestyle is to blame for the disease, even if it may have been a contributing cause. Blame is not helpful. Many factors influence cancer risk; even for lifelong smokers, getting cancer is often just bad luck. • Don’t preach to the patient about staying positive, which can induce feelings of guilt in the patient if things don’t go well. Better to say, “I’m here for you no matter what happens,” and mean it. • Don’t ask about prognosis. If the patient volunteers that information, it’s O.K. to talk further about its implications. Otherwise, it’s better to stifle your curiosity. • Don’t burden the patient with your own feelings of distress, although it’s fine to say, “I’m so sorry this happened to you.” If you feel overwhelmed by the prospect of interacting with a person with cancer, it’s better to say, “I don’t know what to say” than to say nothing at all or to avoid the person entirely, who may then feel abandoned and think you don’t care. This story was published on nytimes.com on 11/28/16. Link: http://www.nytimes.com/2016/11/28/well/live/what-not-to-say-to-a-cancer-patient.html?smid=fb-share&_r=0
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Are you a lung cancer survivor? Please participate in this 5-10 minute anonymous survey, and tell us about your preferences for getting information about lung cancer. Your input is extremely important. It will help us better serve the lung cancer community. https://www.surveymonkey.com/r/R25QHD7
