Malidosa wrote:Can’t seem to understand why the cancer didn’t show up on the scan but I’m supposed to trust the lymph nodes as unremarkable.
My GI doc wanted me to have a follow-up colonoscopy one year after my surgery. For a variety of reasons I didn't get around to it until about 18 months later. When I saw him, I casually mentioned that I figured with all the scans I was having, if there had been a problem in the colon, it would have shown up so I didn't make the colonoscopy a priority while in treatment. His answer: it doesn't work that way. I had a similar discussion with my primary care doc and gyn about a mammogram. Didn't have one because if there was anything wrong, surely it would have shown up on all those chest CTs I was having. They both said: it doesn't work that way.
I can't imagine what you're going through facing a cancer diagnosis AND severe pain with an unknown cause. One of those would have been more than enough for anyone but both at the same time is like a sucker punch. You're beyond scared and you're wiped out with pain. I wish there was something someone here could do to take away your fear or help with your pain but, to some extent, this is one of those things you have to do alone but with company at the same time. What I mean by that is that you need find that inner strength - that spark that awakens the fighter - to pull you out of the dark spaces, but you also need a community such as this one to listen, to make suggestion when appropriate, to let you know you're not alone, to give you hope. Sometimes just having someone listen is enough to save the day.
I think the best piece of advice I can offer from my own experience is this: don't get ahead of the data. It's really hard. You have a scan, you sit and wait for the report assuming the worst. Don't do that. Try to stay positive. Your mental attitude is part of the battle.
Be your own advocate. Yes, get your medical records and ask for copies of every blood test, every scan report, every surgical report, every pathological report, every everything going forward. You should have a duplicate set of your complete medical file at all times. Information is power and you may need those records at some point. Don't assume anything, ask questions.
If you live in a medical marijuana state, you might consider looking there for pain management. I never had the kind of pain you're experiencing so I can't really guide you there but I can tell you that it's helped me for back door pain such as anal fissures. If you want to PM me, I'll be happy to give you some tips on how I use it.
So far your news sounds hopeful. Try to focus on that. You can do this.
The whole community is here for you.