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Hi all. I am guessing this has been explored before but first I have heard of it and would welcome your thoughts.

I met with my med onc last Thurs, regular kind of thing re clinical trial I am on which is going fine. I am on the 5th of 8 weekly vacinnes, and then will have vacinne every 6 weeks after that. So the theory goes, the vacinne will fight the cancer if it comes back. So far I have received the coveted NED and intend to keep it that way. I am completely bushwacked since being on trial, but I will take that as a good sign as being on real thing versus placebo. I have been back at work pretty much full time for awhile now and wil keep pushing forward.

I went for PET scan on Friday to triple check those results. So will have a waitful watchful week waiting for those.

Anyhow, I was discussing the frequency of follow up x-ray/CT scans with my med onc. She basically told me that I could have them whenever I wanted ( she seems to know me well and that I will insist on whatever it is I think I need!!) She said for sure I should have a CT scan /x ray iif I started to experience symptoms again. But, that she actually preferred if we avoided CT scans as much as possible. There are some of both that are mandated by clinical trial I am on so we will go with those for sure. But she said they have learned some things about CT scans lately (and she is a researcher kind of doctor that I really trust) and that they impart so much radiation that they can actually cause secondary malignancy's later in life, ;like twenty years later. She said she expected me to live a good long time and did not want to be the cause of a secondary malignancy later in life.

She also pretty much forbid me (cause she said I worry way too much) to continue to attend the LC support group at our clinic. She said they were way too draining and if anything I should attend the Life After Cancer Support Group. I just feel so obligated to give back and help those in initial diagnosis. But I think I just might take her advice. Never mind, it was so invigorating to hear those words from her (a doctor who has a reputation of telling it like it is, how much longer you have, etc.) I definitely continue to feel so blessed with my results to date (good long life and twenty years later...what posiitve thoughts...I was pretty pumped after seeing her last week!!!).

Anyhow, I do go on, like usual, and am wondering what you guys think about the frequency of CT scans advice. I appreciate that anyone with active cancer would absolutely wan them more frequently. And am not sure I could stand not having them..but her advice has certainly given me cause for thought. I tend to waver from overly positive to pessimistic. But hey who wouldn't with this crappy disease!!

thanks in advance yet again for your wise thoughts

hoping everyone is having a great weekend


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Well, how do I say this without sounding negative?

Lung Cancer Dx.s Stage IIIB which is what I was dx,d at too. We're lucky to be here 2 to 5 years after being dx.d let alone try and look 20 years down the road. Baby steps is what I always say. It's pretty much one day at a time at this stage of the game.

I'm a soon to be 13 year survivor, and I have had (holy crap) 100's of CT scans over that 13 year period. Someday I will have to count it up, but I do know I'm over the 100 mark for CT's.

There are a LOT of things we need to consider that could effect us down the road (long term side effects). Luekemia is one, Heart problems is another, etc., etc., etc. Those two things alone can occure within 5 to 10 years of completing (chemo's and radiation) treatments. The list goes on.

CT scan's or PET scan's are the best things we have to detect our cancer if it comes back. To me CT's/X-rays have been worth the risk. I'm lucky to be here being a late stage lung cancer survivor to begin with.

I'm sorry your Lung Cancer Support Group isn't working out for you. Our In Person Lung Cancer Support Group is a very positive group of people. Sure we have our down moments, but we never ever leave group on a down note. We cry and we laugh a LOT in our group. We always walk out feeling positive and better then when we walked in the door. :wink: We also continue to support one another outside of the support group. I have many wonderful very good friends from our in person support group.

I know people feel on line internet support groups can be downers, with all the sad news of losing members and new members being dx.d. Some people can't do Internet groups either. I take what works for me and I go with it. What works for one, may not work for others.

As far as CT's go, there the best we have at detecting our lung cancer. Like it or not it's all we have! Everyday life can be a risk, it's all how you want to look at it. I live for today and it works just fine for me. My husband always says, "It's for the needy, not the greedy" and I say that in my everyday living. "One day at a time." I only plan about 5 to 6 months ahead. It works! :wink:

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Hey Sandra-

I never thought of it, but I guess, yeah, its more radiation our body is taking in. Makes sense to me altho I haven't heard it anywhere else but that doesn't mean anything.

I also agree with Connie - since I am stage 4, I need to know NOW whats going on and not worrying about 20 years from now. I can see, however, how someone like you who is NED :D would have more to worry about.

Anyway, you know I am rooting for you and waiting with you for your PET scan results. I just know they are gonna be GREAT!!!

Hugs, girlfriend- Patti B

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Sandra: I was recently questioning on cancergrace.org about being on Avastin maintenance for my IIIb lc when my recent CT/PET scan showed remission (that's the word my onc used even though people said they don't use that word at MD Anderson). I guess remission is equivalent to NED(???). Dr West said that once you are diagnosed with IIIb lc, it is expected that it will return. I focus on the word "expected" because we don't have to meet those expectations. If I were you, I would go to Dr West and ask the question about new discoveries relative to CT scans. He's written a lot on the subject of scans and should be up to date on the most recent info. I agree with the others that scans seem to be the best we have right now to pick up early on recurring cancer. I also wouldn't want to take the risk of giving them up because of what could happen 20 years down the line.

I've been avoiding joining a local support group because I, and people who know me well, are afraid that I'd wind up taking care of everyone else. But I have a profound need to give back as well. So I never say never. Fact is every support group of any type has it's own character or personality. Perhaps your doctor knows you and the group and don't think it's a good fit for you. We all need to find our place to deal with cancer and for now, I feel like I've found it between here and cancergrace.org.

Judy in Key West

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