Connect
Anyone feel devasted about how you look & feel? And guilty too?
My Oncologist's reply to my wanting to take Propecia for genetic, and Tamoxifen- induced hair loss and thinning was the following: "This is controversial. There is no data that says it is safe and it could be potentially harmful, ( increased breast cancer risk). We are not in favor of using propecia." Well, there is always a capillus cap. If I had the money. Do any of you feel devastated by how you physically feel and now look from a masectomy and sentinal lymph node removal, and taking Tamoxifen, but feel guilty because other wonderful women are suffering so much more?
Like
Helpful
HugInterested in more discussions like this? Go to the Breast Cancer Support Group.
Connect
Thank God for your quick response. I do not believe most doctors have a clue what it is like to have a strange lump or anything that is new and unusual. If you complain too often, you are then "just a problem" and forgotten about. That is why it is so important to remember, 'It is YOUR BODY, if they will not listen, find someone who will." It is so much more difficult to watch and wait. You made a great decision, Congratultions and Long Life
Gina5009
I agree - I opted for double mastectomy because I'm so very young, and decades of mammograms that find something suspicious and the biopsies etc on repeat was just not something I was signing up for. I believe I was the victim of something called 'flat denial', where smoothing skin and protecting some aesthetics instead of doing implants was something my providers said did not exist whatsoever. Things like nipple-sparring, mindfulness toward scarring, tissue rearrangement, fat transfer, overall preventing concavity so that I could go without a bra and have a smooth profile, or just a little teensy bit convex would have been fantastic. But my providers said they were imaginary and did not exist whatsoever. They recommended tissue expanders, but they were already too big upon waking up from the procedure. I never healed over them. Necrosis. Drain tubes. Wound care and bandages. SOO many doctor visits. Finally those failed implants needed to be removed. What's left behind because they were not filled and sat for so long in their crinkly raisin shapes, is that crinkly raisin shaped scar tissue all around the edges and craters in the middle. The best part of having no breasts should have been not having to wear a bra, but because its so unnatural, asymmetrical, hard, uncomfortable... I wear a little padded bra daily. We'd always been a body-positive family unafraid of walking around the house in various stages of dress and my family now sees me topless occasionally, but I put on a bra when I want to be intimate - I cant imagine that area being 'sexy' ever again, and I have a fantastic, healthy physique otherwise. Another main driver for me to choose the mastectomy in the first place was because I would have had to have chemo/radiation if I kept any of my own breast tissue - so no - I did not do chemo/radiation at all... but I still have such a physical disfigurement to deal with now. There's some saying that I cant recall now about how we don't compare our trauma to the trauma of others... they're all valid. But I feel this when I share with others who have the hormone blockers, radiation, etc. ... that my disfigurement is small in light of their struggles... but it isnt... I have a DORA complaint, I want to sue my doctors, I have rage and depression and feel so deeply misinformed and misguided by my doctors. I hate what's left behind - it's so ugly, and I don't have much more options. Your trauma matters, even if others are doing chemo/radiation..!!