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Karen_L last won the day on March 2
Karen_L had the most liked content!
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City
Portland
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US State (if applicable)
None
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Province or district (if non-US)
N/A
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Country
United States
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Status
Lung cancer patient/survivor
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Interests
Bicycling, hiking, baking, cooking, reading
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TJM reacted to a post in a topic: Anyone have a metastasis to the scalp
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TJM reacted to a post in a topic: Anyone have a metastasis to the scalp
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Tom Galli reacted to a post in a topic: Will I get Cancer again?
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Thanks for the clarification, @edivebuddy!
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Karen_L started following Scan results , Where are your NSCLC met locations? , Will I get Cancer again? and 2 others
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@edivebuddy, I was initially staged at III, with spread to hilar and other lymph nodes, IOW, soft tissues. (Hence the staging.) Due to the location of the big-a$$ tumor, they could biopsy only the lymph nodes.
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I know people who have had recurrences and who continue to live lives of meaning almost 20 years after diagnosis. My oncologist does not use the term NED with lung cancer. The term even the doctors who read scans use is "stable." I'll take it. There are no guarantees, there is no way to know. I think coming to to peace with this is the hardest work of living with lung cancer. I have had gamma knife for a brain met, but not whole brain radiation.
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laurie2020 reacted to a post in a topic: Update
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JuneK reacted to a post in a topic: Challenges on my ROS1 journey
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Tom Galli reacted to a comment on a blog entry: A New Chapter
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LouT reacted to a post in a topic: Scan results
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LouT reacted to a post in a topic: Clear scan
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TJM reacted to a post in a topic: Metastasis to skin
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Karen_L reacted to a post in a topic: I know I'm not alone but dang....
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Karen_L started following Waiting in Limbo
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You don't have to wait to be contacted. I urge YOU call the oncology center (assuming that's where you were referred-- I was.) Tell them you've been referred by Dr. Pulmonology and ask for an appointment with a lung cancer specialist. Even better, go to the cancer center where Dr. Pulmonology has referred you, read about the oncologists there, and see who the lung doctor(s) are. If there isn't a lung doctor, it would be best to find one. Lungevity can help with that. If Dr. Pulmonology has referred you to a specific oncologist, call them directly. If they are a generalist, you can go ahead and meet with them, but lung cancer research is progressing so rapidly you really need someone who follows it. I'd also urge you to call your pulmonologist, or contact her/him thru MyChart, to be sure s/he has sent the tissue for biomarker testing. Lungevity has info about that at https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing It's so hard to wait. Try to breathe deeply and slowly. And please keep us posted. If you want, you may find you receive more responses if you post in the forums.
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Karen_L started following Husband's diagnostic journey , Though to find , Challenges on my ROS1 journey and 1 other
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@edivebuddy I think you raise a topic of real concern. I suggest you contact Lungevity directly and share this with them. You can call or email https://www.lungevity.org/about-us/contact-us
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@TJM That was one helluvan ice storm. We fared well, as did our family members. Many others were not as lucky. I had a brain MRI the Thursday after everything started (I was able to change the test from Wednesday, when it was still sleeting but forecast to warm up.) Things were starting to be manageable Wednesday night, but on Thurs., we still got up way earlier than necessary, packed our micro-spikes, and immediately skidded to our butts on the icy sidewalk. My husband started spreading kitty litter like crazy on our (downhill) driveway. We figured if we could get onto a main thoroughfare, we're be reasonably OK. We got to the cancer center early! I wasn't sure the technologists would show up, but they were there. Hooray! (Except for the MRI part haha.) We parked on the street when we got home. That driveway was still bonkers.... I've not heard of LC metastasizing to the skin, but hey, who knows. I saw a dermatologist for my skin cancer because that's what my PCP said would be best. A little MOHS procedure and I was done. Lou's got great coping advice, as always. Please keep us posted. Karen
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@Kamoto I'm shaking my head over your multiple cancers. I hope you're managing all that may be going with it, i.e., emotions.
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@Cara.M, thanks for the updates. Has the doctor sent the tissue for biomarker testing???? This is essential for determining treatment routes. Different mutations respond to different treatments (and that's an understatement!) Here is information on why it is critical : https://www.lungevity.org/for-patients-caregivers/navigating-your-diagnosis/biomarker-testing Please pursue this immediately.
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Welcome aboard, @allicat1214. Sorry you need to be here, but it's a great place to land. I'm glad to hear how confident you are about your ability to advocate for yourself. I'll join in on the chorus supporting a biopsy down the road. Tissue biopsy is considered the gold standard, although liquid (blood) biopsies are often a place docs start if they want a relatively faster result (days instead of weeks.) Totally agree with the value of the NCCN site. Good luck, and keep us posted.
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Stage 4 Metastisized Lung Cancer
Karen_L replied to laurie2020's topic in SHARE YOUR LUNG CANCER STORY
I so understand! I have been saying I'm not sure whether I'm tired or tired of. Pretty sure it's the latter. LOL. I pulled back from work when I was diagnosed and that was really, really hard for me. But I feel at peace with it now. And, I've started volunteering at a very special site where I can really make a difference, using my professional background. I'm grateful for my life. I wish the same for you. Karen -
Hey, Tom, It looks like an ice skating rink over here in PDX. Luckily we didn't lose power, but so many have been without it since Saturday. We're all in this together-- and won't it be great when we get back to our regular winter rain? K
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Sending prayers and courage....
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Hi Cara, I understand how more information feels worse than keeping the information simple. One set of data makes the situation feel more clear, i.e., “If X, then Y.” But in the world of lung cancer— or rule-out lung cancer— we balance the information we know today with keeping options open for the future…. We do the bast we can, in any given moment. Please know that you can make a decision based on all you know one particular day and weeks or months later they discover something new and BAM you’re already down another path, which they don’t like to change. If you can keep this in mind, you will feel less crazy anxious along the way. In short, more information may not feel helpful, but it’s ultimately a good thing. In terms of your situation, has there now been a definitive cancer diagnosis? This is one thing to be sure you’ve clarified before anything is decided about treatment. If it is, then biomarker testing must be done, preferably before a treatment path is decided on. I suggest that you read more about it so you can start to prepare your list of questions. Here’s a good start on biomarkers. Now is the time to learn as much as you can so you can formulate your questions. You might want to read about lung nodules, which ultimately can be something to watch (not act on). Make sure your reading is done on reputable sites— Lungevity, Go2, Cancer Research UK, National Cancer Institute — are examples of some. Be careful of sites where people insist there is a single best path or give you advice about the definitive thing. There are also folks out there who swear by this or that alternative treatment, special food, or supplement. These often have negative interactions with traditional therapies, so be sure to research before doing anything. That the doc wants to bring your husband’s case to the tumor board is excellent. They will hash it out until they arrive at consensus. I hope you will see this at an excellent thing, because it is. Yes, radiation can cause inflammation. So can other things. If surgery is an option, what would be the benefits over radiation? That’s an important question to ask. Would either treatment now preclude other treatments in the future? Which would be the easiest to tolerate; why? Surgery was not an option for me given the proximity of the cancer to my heart. Many people prefer radiation because the risks compared to major surgery can be less, depending on the patient. Others prefer surgery. You can’t easily make these decisions beforehand, before all the information has come in and been analyzed. But you can prepare questions and have some general ideas of your broad preferences. I have a link to a patient’s self-advocacy guide in my footer. I think it’s pretty helpful. You might find it to be as well. Meanwhile, if there’s nothing to be done until the tumor board meets, make a learning plan. When you're not learning, get cancer out of your mind and focus on something else. Keep us posted. Karen
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A second opinion with a doc who specializes in lung cancer is an excellent idea. I had a lime-sized tumor in my right lung, as well as some nodes, zapped. Radiation took a lot out of me, but killed everything, so that was worth it. It's hard to wade through the initial period of confusion, and it takes time to understand the options. But if you can see it as a step-by-step process, it can help cope with the uncertainty. K
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Sue, This is hard news. I'm so sorry you are dealing with it. Lung cancer does seem to like the brain. About a year after my initial diagnosis, a lesion was found on my brain. Because my fist line of treatment included radiation, I had a radiation oncologist on my team already, and the tumor board at my cancer center recommended gamma knife (similar to cyber knife) treatment. Despite the name, no knives are involved! It's a very precise, targeted form of radiation to the specific tumor sites. There are usually not big side effects-- I had none. (My brother-in-law did a 30 mile bike ride the day after his...which is more than I would attempt.) I was also started on Tagrisso, a therapy that targets EGFR-mutated cancer that's gone to the brain. It's a scary time but take it one step, one breath at a time. Please keep us posted. K