May 19, 2021 07:19PM doubting-cw wrote:

I haven't been on this board for awhile but I do read my favorite topics. Although I wasn't in a "Survivorship Care" specific program my circumstances were about the same as yours as far as the "care team" giving conflicting information. I found many inconsistent answers to my questions from SO and RO. I am considered non-compliant because of refusal to have chemo. I felt I was harassed at each follow-up. My SO even joined the force to get me to agree to chemo. She was the one that told me after waking from surgery that I don't need further treatment and went to tell my waiting boyfriend the same (I wanted another person to hear it as I just woke up from surgery. I asked that she repeat this to him and she did). Then the big turnaround with ONCO-DX. My SO appointment shortly after the report came back (she was not aware of report being done) and I told her I went from no treatment needed to all treatment needed. She was stunned. Left the room and came back to convince me to get radiation (which should come after chemo) WHAT THE ----? Oh and Mo said I would need the "Red Devil" 2nd opinion MO said "Oh no" when I asked if I have chemo does it entail so called Red Devil. And only 4 rounds.

So I have went through radiation and AI. Only out of fear. Yes they do lie.

May 4, 2022 07:52AM - edited May 4, 2022 07:55AM by jons_girl

doubting and others here:

My BS I really liked. As I recall, she told me that my cancer most likely would return if I didn't have rads and take hormone blockers. Shealso told me something like, 'we are constantly learning new information, unlearning information and there is still a lot we don't know about cancer'. She had been practicing at that time over 30 years. That was in 2017.

But my MO at that time sat down with my hubby and I on our first visit. I told this man that I didn't want to do rads or take hormone blocking drugs. I was nearly at menopause when I was dx and didn't want to be thrown into menopause unnaturally. And I had a very small grade 1(almost grade 2 I think) stage 1 cancer. I told him there aren't many studies on this grade/stage cancer and I didn't want to use all my tools in my cancer fighting toolbox. If it returned I didn't want to have to have a mastectomy.

After this discussion he said he'd support my decision. But I should be followed. I told him I would have regular diagnostics done. So I go every 6 mo for diagnostics/scans. I don't have him as my MO anymore (his nurses weren't kind to me and he stopped seeing pts and just teaches now at the teaching hospital system I saw him through).

I nowhave a MO tho who still supports my decision. She regularly checks my blood work and I get scans every 6 mo. So far all is well.

Something tho that is interesting is after surgery and after my appointment with my MO, when I went back to my BS and told her my MO supported my decision, she said well yes it probably won't return Speaking about my cancer returning That was frustrating to me As I felt like she had not been completely honest with me initially.

Just sharing my experience here too.

Blessings to you all!

May 12, 2022 12:54AM - edited May 12, 2022 12:56AM by jons_girl

cardplayer I hope your recovery continues to go well.
yes I think periodic MRI will be part of my diagnostics post cancer. I think it’s a good modality for catching cancer early.
Blessings!

May 13, 2022 11:57PM jons_girl wrote:

hope the appointment went well. Have a great weekend everyone.