Anyone feel devasted about how you look & feel? And guilty too?

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..!!

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

Amen, Sister! I found my breast lump. And my shiney, raised, white patch on my face. The internal medicine doctor told me to just watch it, but didn't think it was anything. I got another option. It was Stage 1 Basal Cell Carcinoma.

Oh dear, you've been through so much. The only comfort I can give you is what I use for underarm shaving. I'm 79 and my underarms have got wrinkly, so I bought myself a Philips Wet & Dry pink and white Lady shaver. It works a treat. It shaves my legs and even shaves my bikini areas too. It comes with a removable cord - you plug it in to charge the battery which lasts for ages. I use it when I'm flying to Ireland, (which is where the battery comes in - no cord needed. And as for our 'wrinkly bits' - I just do the same as you - stretch the skin a little bit and it's quite safe - no cuts if you do it gently. Best of luck on your forward journey. Blessings!

What a wonderful response from a loving person, Gina, who went through so much but was helped by her loving husband and two children which were two other blessings which gave her the courage and stamina to go on with her life and live it to the fullest. Blessings to her and all who go through this journey.

Fortunately or unfortunately, I have never had any of these tests (55 years). I did find a DERMATOFIBROSARCOMA in my right leg which required a wide recission,and a SQUAMOUS CELL CARCINOMA in the skin above my collar bone (looked like a pimple). But other than this, nothing to worry about. I still believe we can be the best cancer detective. If it looks strange, TAKE IT OFF. We know our body better than anyone else. Don't let someone pat you on the head and say "you are just worring to much". "IF IT BARKS LIKE A DOG, IT PROBABLY IS A DOG"
Gina5009

Thank you. The sun is shining, I am ou tof bed, able to read and answer questions and feeling quite useful. It is a glorious day and all is well with the world. I celebrate Memorial Day, since my husbad died of his Service Connected Disability (lung cancer). May God bless you one and all.
Gina5009

You are welcome! Once the Galleri test is approved this year, insurance companies will then start to approve, and pay for test. In the studies, they used people who had active cancer, and people who did not. Of the people who were ," cancer free," they found a man who had stage 2 pancreatic cancer and several women with stage 2 breast cancer. I am now a hypervigilant person, so I want all the tests I can get!!

Hi @colely -- thanks for sharing new info.

No, I had not heard of a CTC test or the Galleri blood test. I read up on them. It sounds like the CTC is good for predicting the likelihood of breast cancer recurrence and the effectiveness of treatment.

If I took the Galleri test, I think I would be having major anxiety waiting for those test results. I'd be afraid of hearing, "You have 10 kinds of cancer." I'm already being treated for 2 different kinds at once and so was my brother (2 different ones from mine). It sounds like you can get the test now at a cash price of around $950.

It would be interesting to look into a crystal ball to see what types of tests and treatments will be available in 5, 10, 15, 20, etc. years.

Hi @gina5009 -- thank you for your response. It is amazing what all you have overcome and have outlived most people that had few health issues. Loved your "You can't fault success" statement. 🙂