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Jul 17, 2016 08:02AM
I just want to put this out there because there is very little info about PLCIS, It's all a very personal decision. It's not up to anyone but you. So whatever happened to me, may never ever happen to you, but you should know personal realities.
I was diagnosed with LCIS & ALH (or ADH I don't even remember now) back in 2010. It was confusing and frustrating. There was absolutely NO WAY I was going to consider PBMX for that. My surgeon agreed.
Then after an exisional (sp?) biopsy, they found pleomorphic lcis. That changed everything for me. I remember having to drive my son to school after getting that call, and really just wanting to shake, cry, see my dr ... etc, That little drive took forever.
PLCIS was too much for me. There was not a long enough history since it had only been discovered about 10 years prior to my dx, and there was obviously way too much going on inside my breast. I gave it a year of observation and more & more testing and decided in the end, I wanted this in my rear view mirror. I wanted my life back, I scheduled a PBMX with immediate implant reconstruction.
I needed to be comfortable so I went with local docs. For most of the surgery, that was the right choice. I absolutely could have done better in Boston for recon surgery. I was just too scared to travel for this scary surgery.
I had my nipple and skin sparring PBMX on Friday the 13th (eek!!) in January of 2012. A week later I got the call that they found invasive. I had not escaped it afterall. My cancer was lobular which is notoriously hard to find. I had been through mammograms, and I had had 2 breast MRIs. Nothing showed up. These tiny tumors were 4mm and 7mm and were tested through Oncotype DX. My chance of recurrence with tamoxifen is about 5% which is really damn good. So the surgery pretty much saved my life. My son was 10 when this started. He's 16 today, and I have been there to watch him grow into a very fine young man. There is no price tag on that.
My recon is OK. Not great. It's been 4 years, and I may try another PS (Boston turned out to be a bust afterall - no pun intended lol) but this time I might as well go bigger =D
I'm here today because 6 years ago my son and I had carved our names in a shed at the end of summer. We found that shed yesterday. I had no idea when we carved it that in two weeks, my life was going to change forever,
Today I am a much stronger woman in every sense of the word. The little fears that plagued me are soooooo silly to me now. I faced cancer. I faced scary surgeries.I faced the hardest decision of my life. Truly, there isn't much that can (or will) f*ck with me right now.
Tamoxifen has been OK. The first 3 years were fine ... annoying hot flashes but ok. I had some abnormal and very intense uterine bleeding this year (4th year of tamoxifen) and had an endometrial ablation. At this point in my life, I refuse to give up another body part, so I'm hoping the ablation did the trick and I wont need a hysterectomy. I miss my breasts, I loved them. When I look back, there was absolutely no other choice for me. Had I not had the surgery, the cancer might STILL be growing and invading my body. I may not have lived to see my son become this amazing person.
These days I hardly think about cancer. I rarely think of myself as a breast cancer patient anymore (though technically I am a survivor). And frankly, I do not obsess over the possibility of other cancers. I see my onc twice a year, and he says I'm the easiest patient he has. I know it could have been so much different. I'll never be the person I was prior to fall 2010, but I am better.
Good luck with your decision and everything that comes with it. =)
Dx: ALH, LCIS 10/10, PLCIS 11/10 ~ PBM 1/13/12 ILC 4mm & 7mm found post MX Stage 1 Grade 2 ER/PR+ HER2- 0/9 nodes Oncotype Score = 6, Tamoxifen 4/12 ~I want this sh*t to leave me alone
1/13/2012, ILC, <1cm, Stage IB, Grade 2, 0/9 nodes, ER+/PR+, HER2-