[norkdo]

Hi VDC! You are a wonderful writer, and obviously highly intelligent and informed. I enjoyed reading your journey, and felt great sympathy for you as I recall all the stress and terror of being diagnosed, etc.
I was stage 3b on diagnosis, did the cure for the next year and a half, including a failed reconstruction, and have been clear of cancer for five years. I want to ask you to reread the wonderful responses you've received on this thread, and kind of read between the lines if you can. I am in awe of the good advice I see on all these pages.
I say this because I hadn't been on this site in many months, and the first thing I check on is (no, no this isn't scare tactics, just my experience) the survival of some really good women I recall helping me over the past five yrs that I've checked in here, and esp those from that first year or two.
When I read about another death of a super smart lady with HER2 positive cancer who has been on the boards helping others, I keep saying "why? why? she was so young! why?" etc. This unknowing is what I want to give to you.
Women with exactly the same diagnosis that I had, and who found out they had cancer around the same time that I did, are no longer here. Pause for effect. I scratch my head, I reread every word on everone's signature information, and I still don't know why I am here, a chronic smoker who eats McDonald's a lot. A lack of knowledge is never good, but also it seems to have zero effect on survival. I knew less than my friends who died, for example.
Please don't think I advocate ignorance. I just keep in front of me a deep respect for our collective lack of certain knowledge about exactly how and exactly when cancer cells travel to the brain, bones, lungs, and liver. This unknowing "must give us pause." Certainty itself can be a trap or it may be a way of putting a sense of control on the uncontrollable; a healthy and common response to terror. With only a fifty percent chance the Medical Trial you want will select you for the real medicine, and the fact the other fifty percent of women may die for the cause of future survival for women as yet undiagnosed, you need to consider choosing to undergo the old-fashioned slash/poison/burn treatment that has improved, I understand, in the five yrs since I had it, and I am alive/NED.
I was a total whiny, complaining, pain in the butt to nurses and radiation techs, but I have to say I was a willing and happy pincushion for my medical oncologist and my radiation oncologist (although I stretched out the rads, with my fears winning over my duty to myself to comply on consecutive days to the point my radiation oncologist had to remind me that the studies for my future survival were only done on patients who did the rads on consecutive days, unlike the postponing that I did between sessions.)
My sister in law was diagnosed with eye cancer and the onc prescribed immediate removal of the eyeball. She refused and instead went to the UK and had a new kind of more choosy procedure that looked to be the way forward, in lieu of the glass eye. She was a young woman in her early 40's and she is dead now. In the months she was turning down the slash/poison/burn method I found it harder and harder to stay positive and even to talk with her about her enthusiasm for the supplements she hoped would prolong her life, etc.
The reason I asked you to reread some of the responses on this thread as if you were reading through the lines, is that I feel some of them do convey the respect for the traditional timeline, etc. and I may be reading into them but I think some of the writers were urging sort of what I am trying to do here, but without risking being the dickhead I have exposed myself to be. I'm just saying please please please ask yourself if completely surrendering to the Medical Oncologist, despite your misgivings, might not just be the right thing to do, instead of throwing up roadblocks to her? Only saying it because my late sister-in-law might have had a way better chance of being alive right now had she done so.
There is a psychological reason behind all our decisions and for me, immediately after diagnosis, anxiety and terror were pretty well out there dancing on every thought my brain had. The steroids made me angrier, the worry about pain and nausea were way worse than the actual pain and nausea of all the treatments. It was hard to just ask the oncs "gimme the stats if I don't take this course of action and then gimme the stats if I do" and then to take a big breath and submit/surrender to stats, but I did. I'm glad I did; it worked for me.
I say this because the shrinkage of certain tumours may not necessarily be good news, if, say, the food and blood supply to them had relocated to other lymph nodes or the brain, bones, lungs and liver. Perhaps the energy provided previously to those breast tumours is now being used to install new tumours somewhere else? Just because breast tumours shrink, there is absolutely no science that says, at this point in what we all collectively know, that the cancer is not working on a plan to metastasize.