Anyone ALH positive Tamoxifen rather then pmx?

gnoz8

I just received the results of my first ever biopsy. ALH, PASH, columnar cell changes all listed on the report. I am 43 yrs old. No children.

Family history: My mother was diagnosed with stage 3 bc at 52 (she's still NED- whoo-hoo!), and her mother died of bc the the age of 47. I have no other 1st degree female relatives, and my mother's older sister has never developed bc. I have tested neg for BRACA1/2 and I'm awaiting results of the updated panel (of all the other known genetic mutations). My mom has agreed to get tested as well.

My breasts are very dense, so I have been getting yearly MRIs and diagnostic mammos each year for the last 6 years or so. This was my first biopsy, and now I'm scared and saddened about the choices I have.

I am scheduled to see (my mom's) breast surgeon next week. I always thought I would get a pmx at the first sign of trouble, but I'm freaking out way more than I expected. From what I know, my choices are careful surveillance, Tamoxifen, (some combo of the 2), or pmx. I'm emotionally all over the place. I'm mourning the loss of my breasts before it happens. I would like to find a way to keep them for a bit longer at least, but feel like I'm under the gun to make a decision now (self-inflicted...again, I haven't even seen the surgeon yet). But then...if I developed bc while I was holding out for a while I can't imagine my regret if it was invasive. But I'm having an incredibly hard time imagining no sensation in chest and to be without mine.

Anyone BRAC neg with family history and ALH that didn't choose pmx? Regrets? Stories? Any feedback would be helpful.

gnoz8

I should add that the MRI found it . My mammo 6 moNths ago showed no abnormalities.

Bhmomma

I was diagnosed with ALH summer of 2017. Along with family history (sister, aunt cousin), I was referred to a high risk program. I started Tamoxifen in November along with alternating MRI and mammograms. Tolerating Tamoxifen with minimal side effects after an adjustment period. First MRI clear with BIRADs 2 report.

Lula73

I had IDC, but I did have bmx with immediate DIEP flap reconstruction. I wanted to chime in and help alleviate some of your fears if you do opt for mastectomy. It’s not like your chest is completely numb. Most of the breast skin still has feeling, just not the nipple and a few other areas. You can’t feel the inner tissue anymore though. It’s very hard to describe, but definitely not numb or completely without feeling. The breasts are warm and soft. They move with me and will age with me. They look and feel (from the outside and from the inside) 100% natural. With the DIEP flap recon, you basically have a tummy tuck and they use that tissue they remove to rebuild the breast mounds. If you’re thin they can use your hips/rear and give you a butt lift in the process. They can do the recon during the same surgery as the mastectomy, so you go in with breasts and come back out with breasts. You would likely have the option to do skin/nipple sparing mx as well. It’s a great alternative to implants. I would do it again in a heartbeat.

gnoz8

Thanks so much, ladies!! Your input helps a lot!!! Thank you!

bhmomma- I'm encouraged to hear from someone tolerating tamox well. I've heard such horror stories.

Lula73- I haven't gotten too far with weighing recon options. DIEP sounds like something I definitely need to investigate. The TRAM and (other one?) that gets into the muscle tissue makes me worry, so I think I haven't imagined anything outside of implants. If they can rebuild me without muscle cuts, then I'm super interested. I'm not particularly "skinny", but there's not enough in my stomach to rebuild my breasts. I'm relatively thin/athletic with D cups. You have definitely helped me with the fears!! Thank you! Thank you!! I noticed you are in NC. Me too, Charlotte. Do you mind sharing the name of your plastic surgeon?

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