Has anyone heard from Amanda?
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I'm very touched to see this thread (thanks, Lisa, for starting it).
I'm not online much these days - or, at least, not commenting (apart from support groups, it seems. LOL - sort of).
If I read anything social media-wise, though, it's to lurk at (the old) WTF. to see how and what my old friends are doing. Also for guidance about how the like-minded are responding to news.
I have been dealing for ~half a year with a second bout of breast cancer (different breast, different cell type), which I'm glad to report is only Stage 1 - they just told me. Was kind of a shock as the "something" (i.e., do I feel anything or not? Gyn had same reaction, starting four years ago), was dxed as nothing until finally they did a bx. False negatives! Seems this rarer variety ("invasive lobular") is universally described as "sneaky" - that is, really hard to identify.
But after two lumpectomies (suspecting my breast surgeon of dropping the ball first time. Can't abide her), they prescribed me a short round of radiation just finished. (Yay!)
I refused hormone therapy after in-depth research via AI program, which found an important clinical trial in Denmark reporting women in my category (older age, early stage, "node negative") only improve their risk of recurrence by 5% if they take it.
And DO get many negative side-effects, most concerning being loss of bone density. As I told more than one oncologist. who pushed for the hormone blockers, "I am not just a walking breast"! That is to say, there are all my orthopedic issues. They predispose to falling which would be fractures instead of bruises if my good bone density were lost. Cost/benefit decision.
Typical issue of modern specialization. Every specialized MD wants to treat only THEIR part of the body. Didn't get ANY help in thinking it through at top center I flew to, but pretty sure I decided right. [NO JINX!]
As best I can tell, my risk of recurrence now (counting on the radiation, great radiologist) is quite low.
Feel so lucky, though, especially during radiation treatment. Think I was only patient in the waiting room with her real hair, having been spared the ravages of chemo - and sadder, so many of the others were quite young. (Result of policy of not having insurance pay for mammograms except for older patients. The age cut off has since been reduced, caution increased, but leaving many victims paying for the mostly male-dominated previous cut-off. Grrr!)
And if their CA was estrogen positive, they were also forced to take those hormone blockers, leading to very premature menopause - often before having a kid. Really sucky - to be inducted into the "shitty titty club" so young, as one sub-Reddit called it.
Main casualty for me was a family dynamics issue it precipitated. Between that, Israeli wars, Trump and the cancer, I've put on a tidy amount of weight I'm hoping to attack (also to return to the gym). Emotional eating! Wish I qualified for a semaglutide (and could afford it. Hope Biden squeaks in his proposal for Medicare to cover it, though seems unlikely.)
Great to "visit" you all, and really feels warm to have had my absence missed!
(Thanks to AdagioM's FBK message I found. Appreciation, Adagio!)
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@Amanda - So glad the word got to you (thanks @AdagioM !), and that you have found your way here to your WTF friends. The WTF community continues here at WTF-Beta, and we've seen a few folks who have been gone for a long time re-join us.
Sounds like it's been a tough road for you, but am so happy to hear you are out of active treatment and that the prognosis looks good. Hope to see you more often, whether it's lurking or posting!
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We have a thread with some of the basics. I had been meaning to formalize the how-to guide a bit but haven't gotten around to it yet.
https://wtf.coffee-room.com/topic/22/tips-tricks-and-how-tos
Feel free to post your questions here, though, as they come up. The forum is feature-rich and allows a lot of customizability.
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Hi Amanda! Nice to see you!