LCIS at 32

I was diagnosed with LCIS after a breast reduction in August. I've seen 4 doctors, all of which have varied in treatment recommendations. I've personally decided I won't take the meds, so I'm deciding between monitoring an Double mastectomy. I understand the mastectomy is a big step but considering my age and having to monitor every 6 months for the rest of my life seems like a lot of stress. Right now I could have skin and nipple sparing mastectomy and be done withit. Am I crazy for leaning toward this option?

I think considering mastectomy is totally reasonable. I'm considering it due to finding out at 48 that I have LCIS and I don't have as many years ahead of me as you do. Prophylactic mastectomy is not what most people with LCIS choose to do, but some do and it's a valid option. I'm still working on deciding what I'm going to do. Good luck with your decision.

I am asking the same thing. I am 42 and was diagnosed in 2016 with LCIS. My screening month was October and I got to go for additional mammogram views and ultrasound in November. I got the all clear this year, but I was worried for 2 months before October and I was panicking for the month of October when I knew that something was found in my imaging but the doctor’s office did not call me back to tell me what the radiologist found. I was so pissed at myself that I didn’t get the PBMX last year like I planned.

I told myself that I would give myself the holidays not to worry about it and that I would make the decision in the new year. Here it is the new year and I don’t really know who to talk to. Plastic surgeon said yes, oncologist was on board, breast surgeon said he would do it, but felt it was overkill.

I would love to know what you decide. At least you have the option for nipple sparing. The PS didn’t recommend it for me

Thanks so much for responding. I can’t even imagine what you’ve gone through. I appreciate you validating my concerns about the decisions ahead! Good luck!

SSWNC, how did it go? I am awaiting surgery on 2/21

Hi All-

Just diagnosed with LCIS and ALH and I am totally freaked out. I'm 34, went in for a mamo since I noticed some ever so slight swelling in my right breast. Mamo was normal, but I insisted on MRI since I am younger and with denser breast. MRI showed 2 areas of enhancement, both of which they assured me was "nothing at all to worry about" and only the larger of the two was ordered for further testing. When I went back for the MRI biopsy, only one of the areas showed again, which happened to be the smaller of the two they didn't even advise taking a sample of...They grabbed a sample because I was already there and on the table and it came back with these atypical cells. I am meeting with the surgeon tomorrow who will perform the excisional biop to check for anything further. They claim none of what they found could be responsible for the slight swelling and that is likely caused from a recent, intentional 10lb weight drop. (Baby weight from youngest).

Reading all these stories now I am totally freaked out. I had no idea they would likely advise me to take anti cancer drugs, for years to come, or even consider a BMX. I have no family history of BC, nor does my age put me at elevated risk, but I just don't know what to think. I keep worrying they will find something more invasive now, I just don't get it because I have had two MRI's at this point and I can't imagine they would have missed something else, but I know these lobular cancers can hide. This is all so scary, and I appreciate at least reading these forums and knowing I am not alone.

Thank you so much for responding and I’m happy I’m not alone. I met with the surgeon and asked about a BMX.. because I am young and don’t want to deal with the anxiety of having test every 6 months and drugs for 5 years with loads of potential side affects. I already have implants and am not attached in anyway, especially now when I find out I have all these abnormal cells! My LCIS had a subset of cells showing slightly pleomorphic characteristics, so that was all I needed to hear to send my anxiety through the roof! Although I’ve had two MRI’s with nothing showing up, aside from the small area they excised, I’m still worried once they get in there something else will be lurking. After all, I had a slight swelling in my right breast which started on this, so I’m very nervous about what could come back on the final path. I know the stuff can hide well, even on MRIs. My surgeon does not want to operate twice ( meaning do the excisional biopsy, then right after the bmx) , so I need to follow up for a second opinion to be sure, as he says this is not what people typically do given my situation. He actually told me to meet with second opinion, as well as his clinical oncologist and PS, as he is a surgical oncologist. My stepmother is battling stage four metastasized cancer and my father is at the end of his rope right now. I played this situation way down to my family so they wouldn’t worry, and of course my mother thinks I am overreacting and it is too drastic of a decision. Reading through some of the experiences on here is really helpful, and I’m trying to look at this as the universe giving me the gift of foresight which many did not receive. I have two very small children 3 1/2 and 1 1/2 so my main concern is living to see them grow up. How have you been coping with the anxiety of enhanced testing? Are they even able to see anything on a mammogram or you are doing MRIs as well? What a tough decision we all have. Let me know what you end up deciding, and thank you for the support

hi Michi, I would love to hear what you decide. We seem to be in the same boat especially with young kids to think about. I am leaning toward the PBMX and will likely do it in January.

Best wishes in your surgery, SSWNC and Michi. The comments, background and thought process you lay out is helpful for all who read it.

Hi Nicola Sue,

Thanks for responding, and it's good to hear from others with similar situations. I've just been so anxiety ridden since I found out, I keep thinking they are missing something, since this all started with my right breast looking a tad swollen. I've had two MRI's and 2 Mammos at this point, they still can't see anything other than this 5 mm area of cells that is showing abnormal. 2.2 cm was taken out for the core biopsy, so I'm not even sure it that would show now. While I hope and pray there is nothing else there, I know it's always a risk, even with an excesional. Also, a sub set of my cells had some "slightly more plemorphic" characteristics, so I know these can be even more aggressive. I guess what I'm saying is that I don't have a lot of faith in the testing, since nothing showed on either mammo. I'm also more of a worrier, so it's more a personality problem of mine!

Have you been able to get past the anxiety part okay? Can I ask, what made you change your mind on the BMX?

Thanks!

Nicola-

I’m actually scheduled for mine Monday but I have certainly been trying to talk myself out of it and think of a million reasons why I should back out, ultimately I am just too high strong and anxiety ridden by nature to deal with increased surveillance. I am curious what changed your mind? What did the doctor say in terms of risk for surgery...