3rd surgery for Atypia in 2 years... Time for the T-word. :-/

CaringMommy

Hi everyone, just feeling the need to vent to those who understand. Two years ago, I had two areas of ADH removed, from my left breast and higher up on the chest wall. Then, earlier this year, I had an area of ALH removed from the same area of the same breast. Now, six months later, they have found more ADH on the other side of that same breast... Sigh.... I'm trying to keep things in perspective, as I know other people have it much worse than I do. I'm glad it's not cancer, and I'm grateful that I have health insurance. Still, I can't help but feel a little down about the fact that I'm going to have to take off work again for yet another surgery and start taking Tamoxifen after that. I'm 39 years old, so by the time I'm done taking it, I'm guessing my chance of having a second child biologically will be out the window. Has anyone else had atypia this often?

Michi

I hear ya! I had ALH and LCIS, it was turning into much of the same, opted for a prophylactic BMX in May and just finished my exchange surgery last week. I’m glad I did it, wasn’t up for 5 years on Tamo and my hubby and I want another kid possibly, I’m 35, so wasn’t waiting another 5 plus years to do that, and go knows what tamox would’ve done to me side affect wise.

Sorry you’re in this position, but you aren’t alone and if you choose to do something more drastic like I did, you’ll be fine! These pre cancerous cells are so annoying and nobody seems to really know enough about them to make me comfortable.

CaringMommy

Thank you for the response! I had been wondering if a prophylactic BMX might be a consideration. I will have to ask my surgeon about that. I was an A cup BEFORE all this, so there's really not much left to remove at this point anyways! Earlier I would have felt it to be a drastic measure, but considering this will be the second excisional biopsy in less than 9 months, fourth total... and also considering the cost of all these needle biopsies adding up (One was $42,000 before insurance!), It might be worth it! Not to mention my aunt had breast cancer in her early 40s (she's fine now), and I feel the same way you did regarding Tamoxifen and having more children.

Thank you for the advice and for the feedback.

Sol2018

Thanks for posting this! I'm curious if your doctor was recommending a certain path in particular. I have just met with a new doctor who treats adh/borderline dcis in young women (<40) aggressively. She recommended a mx for me which I thought was extreme. I've had a surgery 3 years ago

CaringMommy

@Sol2018 that does sound extreme, especially if your surgery was 3 years ago. After the first surgery, my surgeon said i was probably fine to just follow up every six months... after the second surgery, she gave me a referral to an oncologist. I also got a second opinion, and they were both in agreement that I "might as well try" the Tamoxifen. However, they also both made references to studies linking my IUD (Mirena) to cancer, and I knew that I would have to switch to non-hormonal anyways, in order to start the Tamoxifen. So, I decided I wanted to only change one thing in my body at a time, and I was HOPING that the change in birth control might make a difference. ( I also started eating healthier and cut back on sugar and alcohol. I'm slim/athletic, exercise regularly and don't smoke) Unfortunately, none of this made a difference. I had my follow up with the oncologist last week, and so now we are definitely going to start the Tamoxifen. Side note: The first surgery was the only time that ADH showed up on the final pathology results after surgery. The other two times, the needle biopsy got it all, so that's another reason why a mx might be extreme.

Rshep9101

I am encouraged to hear that I am not the only one struggling with the prospect of dealing with these diagnoses and procedures for so many years to come. I was diagnosed with ALH 8 years ago (@30) after experiencing breast symptoms. They found clusters of microcalcifications on my left breast and found the ALH after a stereotactic biopsy. The surgeon wanted more tissue to sample so she did an excisional. A few years later they found a fibroadenoma which was classified as benign after a needle biopsy. Yesterday I was told that it has grown and needs to be removed. Another surgery. Ugh. I am scared of dealing with this for the rest of my life. The fear, the anxiety, the appearance of my breasts. We had our last baby 3 years ago and I finished breastfeeding a year after that. I see my surgeon in the 19th and feel like she is going to suggest BPM. The radiologist asked me if that was the plan...which felt a bit jarring. I am terrified of the concept of BPM and it seems extreme to me with no cancer diagnosis but this is a lot to endure for so many years to come. Good luck to you....what treatment direction are you leaning?

CaringMommy

Rshep9101, I hope it will ease your mind to know that even after three different surgeries and atypia every time, BPM has never even been mentioned by my surgeon, who is one of the top in the US. I think it sounds extreme, and I would be surprised if your surgeon recommends it. Hopefully your excisional biopsy will go well. (I must say, they've been getting easier every time. Third times a charm? LOL) ....Praying for benign results for you!!! xx

SouthernCatbird

You surgeon may mention it if you have a strong family history though. My mother died of BC when she was 49, her only sister was diagnosed in her early 50s, and my grandmother ended up with BC in her 80s. When my doctor discussed my biopsy results, she stated that she would recommend BPM if I had ADH - however, I ended up with usual DH and am considering tamoxifen.

CaringMommy

@SouthernCatbird, yes, absolutely, I forgot to mention that. My aunt had breast cancer, but she did not test positive for BRCA, therefore I do not have a reason to consider BPM. For someone with a strong family history as well as ADH, that would definitely be a consideration. I just feel it’s an extreme solution for someone who is only dealing with atypia, without the family history.

CaringMommy

So.... I've been taking the Tamoxifen and was hoping for good news at the six month follow up.... scheduled for another stereotactic biopsy next week. Damn.

cattledoglv

damn! That sucks! I’ve had two surgeries for ADH in two years. They have taken it out of both breasts now. Coming up on my Mammo and US the 20th in the High Risk clinic my dr has. They do it all that day and give you the results that day so at least you aren’t waiting around and worrying for days on end. Good luck on your bx!