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RH1970

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  • City
    Ithaca
  • US State (if applicable)
    NEW YORK
  • Country
    USA
  • Gender
    Male
  • Status
    Lung cancer patient/survivor
  • Interests
    Camping, Running, Music Making, Synthesizers

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  1. Thank you for the encouragement all. I'm trying very hard not to let this consume my thoughts. Judy, if you don't mind me asking, how long have you been monitoring the nodule? Did it arise after your treatment? Thanks again. -Rick
  2. Hi All, I was diagnosed in Sept with NSCLC, T1N2M0, Stage IIIb, EGFR+. I had concurrent Chemo/rads in Nov/Dec. My first scan in Jan showed a partial remission with just a slight SUV uptake under a PET scan at the original tumor site, which was written off as inflammation. Also at that time, a liquid biopsy showed no trace of EGFR mutation in the blood stream. I started Tagrisso as consolidation/maintenance. My second scan in April showed NED! I was so happy! But my most recent 3 month CT scan (July) now shows a new small nodule ~5mm near the original radiation treatment field. My Radiation Oncologist says it is within 2cm of the radiation field, but definitely separate from it. My team agrees that it is too small to biopsy or PET scan. They don't know if it is a recurrence or just the result of scar tissue, inflammation, etc.. surfacing from the radiation treatment. I'm very worried about this result. Of course, I'm hoping that whatever it is, it's benign. I expected to continue on Tagrisso for longer than 6 months, and indeed my Medical Oncologist says that ,statistically, the Tagrisso should still be working. I go back for another scan in 1 month to see if the nodule has changed and possibly PET. Has anyone here had a similar experience? Could this indeed be benign growth? My mind is racing, already plotting courses for treating a recurrence. Thanks so much for any input. -Rick
  3. It sounds like it's working. That's good. Why would a PET scan be denied. Isn't that essential for monitoring a treatment's success? Strange. -Rick
  4. Thanks Barb, How are you doing on the chemo-radiation/immunotherapy course? Has it shown progress for you? Out of curiosity, did you have biomarker tests for mutations? -Rick
  5. RH1970

    Forming a Team

    Hi all, I keep reading about the importance of the 'team' that forms around cancer patients at the beginning of the process. I've read that these teams might Include Surgeons, Oncologist, Radiologists, Counselors, Coordinators, Dietitians, etc... How and when do these teams form? Although I haven't yet officially been diagnosed or staged, so far my only contact has been directly with the surgeon, who will be performing a biopsy this Friday. Is this team something I need to be requesting and/or forming myself, or will the CCC (Comprehensive Cancer Center) take on this charge automatically after diagnosis. I realize I may be getting ahead of myself, but understanding how this works would give me a bit more confidence, and I don't want to be missing a crucial step. Thanks for any information. -Rick
  6. Karen, I’m struggling with that ominous possibility too, so I know where you’re coming from. Like the others have suggested, I think a PET scan would be the next step in figuring out what you’re dealing with, then on to a biopsy. I may be simplifying It, but the way I understand it is that if a PET scan shows little or no uptake, the nodule is more likely benign. However if it does show an uptake, malignancy is still a possibility, and so a biopsy is then needed. I’ve also come to understand that an PET scan uptake still doesn’t necessarily mean malignancy. It could also still mean some kind of infection. In the end only way to confirm what you’re dealing with is a biopsy. I’ve moving on to a biopsy next Friday, but until then, I’m trying not to draw any dire conclusions. It’s definitely hard, but I’m trying. The people in this forum are a BIG help. Good luck and keep us posted. -Rick
  7. I'm a little confused about whether curative surgery is an option for stage iii lung cancer? If I'm looking at the NCCN guidelines, surgery as a primary treatment is listed as an option for stage iii (N0 or N1), but for N2 it reads 'Not Many'. Then I wonder if surgery can become an option for stage iii after neo-adjuvant chemo or chemo-radiation. Or is this determined on an individual basis beyond the guidelines. Can anyone clear this up for me? Thanks. -Rick
  8. Thanks Susan, I appreciate it. Michelle, Thanks for the book recommendations. I downloaded Anticancer Living just now...Looking forward to it! -Rick
  9. Sorry for the noob question, but I have a biopsy scheduled for next Friday 9/11, and I’ll probably be getting results a few days later, and I’m wondering if I should request the results be sent to another institution to get their take on the results and treatment options. The answer seems like an obvious ‘yes’, but is there time for this? Inevitably, I’d need to wait a week for a consultation appointment and I feel like the longer I wait the more chance the cancer has time to creep into another lymph node or something. Thanks for any advice. -Rick
  10. Thanks Judy, Yes, this is all so hard to believe. After talking it over with my wife, I think I’m considering counseling to try to figure out how to cope with this better. Right now, I’m reeling and I haven’t even been diagnosed yet. I need to find some of that magic that thrivers seem to possess. I sincerely don’t understand where that comes from. I remember from the Prostate Cancer experience, once a treatment plan was determined, I felt a HUGE sense of relief. You’re right, though. This site does help, and the newly approved treatments do offer some encouragement. Who knows what may come in the next couple of years. Thanks for posting. -Rick
  11. Thanks Tom. That DOES help! I’m still not officially staged.. one doctor says probably stage iii, the other says he thinks more like stage ii. Biopsy (hopefully next week) will tell more. -Rick
  12. Thanks Babs, I need to find those special tools to keep hope up. They don’t come naturally for me. This forum definitely helps though. Thanks for your support. -Rick
  13. I will definitely ask about these biomarkers. Sounds like targeted therapies could help if these mutations are there. Thanks -Rick
  14. Gary, Thanks for the encouragement. I am a pessimist my nature, but in this case I will definitely try not to lose hope. I have three young boys and you're right, the alternative is NO GOOD for anyone. No sense if filling the room with tears and dread. Diane, I wondered that too, but my PSA markers have been 'undetectable' since my operation in 2012. So I think PC mets is unlikely. You're right: the biopsy will tell all. Thanks for the good luck wishes. I'll keep you posted. -Rick
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