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HER2 positive research trial TPIV100

Breast Cancer | Last Active: Nov 24, 2022 | Replies (6)

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@auntieoakley

I am her2 positive, I was diagnosed in my 30s. I had a surgical biopsy, then a partial mastectomy, about a third of my breast. Then back again for axillary node dissection. I was stage 2b, with grade 3 cancer. In one year I had 6 rounds of TAC chemo, 6 weeks of radiation, and then an oopherectomy. I took 5 years of tamoxifen, and almost 10 years of arimidex. I had to go back and take herceptin because it had not been approved for frontline use yet, only relapsed.
It has been grueling at times but usually in short bursts, then I get to whine about it for years. 😂😂
I was diagnosed 18 years ago, and given the original news on the Wednesday evening before Thanksgiving.
I love how far they have come with treatments for her2, I love that everyone doesn’t have to take all the most aggressive treatments.
The one regret for me is that I didn’t push harder for mastectomy. I really wanted a bi lateral without reconstruction, when the doctor said no they don’t do that anymore, I accepted that. I made the best decision as I could at the time, and I am truly grateful for the life I have had for these years.
Are you being treated at a large cancer center? Are you still considering a mastectomy?

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Replies to "I am her2 positive, I was diagnosed in my 30s. I had a surgical biopsy, then..."

I am being treated at Mayo Clinic in AZ. I count this as blessing. I initially started at a different clinic which my pcp referred me to before diagnosis. Deep inside I feel if I had been at Mayo to start with, it would have been caught before it moving to stage 2. Mine is grade 3 as well. I already had mastectomy on 9/27/22, I opted for bilateral even though the surgeon said I don’t need to do the other one. She supported my decision. She was able to do nipple sparring. I have expanders currently in due to doing radiation. My other dilemma now is whether I shouldn’t have done the nipple sparring and just have the plastic surgeon rebuild the skin and nipple using diep flap. I had anxiety after the mastectomy whether it was right decision to do nipple sparring.
Have you done anything different since diagnosis diet related?