May 24, 2021 04:13PM - edited May 24, 2021 04:14PM by AwesomeR

I was diagnosed with DCIS grade 3, in April 2021, have had 2 lumpectomies, both times they found DCIS in the tissues removed. The surgeon is recommending I have another lumpectomy to remove the remaining tissues as there is not much and she would reach the chest wall. I have been going back and forth between lumpectomy and mastectomy, not sure which decision would be the right one. What if I have the third lumpectomy, and they find more DCIS, do I have to do a mastectomy after that?

Thank you for any help or advise youl can offer.

May 27, 2021 09:10AM jetcat wrote:

AwesomeR- I don’t have the deep technical knowledge that you will get from others on this board but I have had DCIS twice in same breast and every instinct I have would advise that you think seriously about mastectomy at this point. I don’t know whether you are thinking of reconstruction but it would be better to do that when you haven’t had radiation. On the other hand, you may be comfortable with close surveillance after your lx and radiation so that you catch a possible new DCIS/IDC early. I wasn’t prepared for the second occurrence at all but if you are aware that this can happen, you can just factor that into your decision. It’s a very hard decision and I wish you well!

Jun 14, 2021 01:08PM jetcat wrote:

Hi Sorrel- so sorry you’re dealing with this challenge. The emotions can be overwhelming. Please know that you are not in imminent danger and you will get through this. Maybe make a list of your questions for your care team - There’s excellent info on this site. Then once you have your plan, focus on one step at a time. I can tell you that every part of my treatment turned out to be so much easier than I imagined. Surgeries were very easy - I was able to go home the same day for both lx and mx which was my choice. I was very afraid of radiation and that was easy as well.

Take care

Sep 10, 2021 03:21AM okbecca wrote:

I had a bmx 5 1/2 years ago and have been cancer free since. I was diagnosed with a 6 mm DCIS, grade 2 with clean margins. I never considered anything other than a bmx because I believed there was more cancer than the scans showed. Also, I didn't want to take radiation or hormone suppressants. I wanted a bi-lateral because I wanted to be done with this, once and for all.

The pathology on the bmx discovered that I had several small areas of dcis and lcis in both breasts that the scans had not shown. I know this is going to sound odd, and you don't have to believe me if you don't want to, but I already knew they would find that. I had told my husband and all my friends that there was more cancer. I'm not sure how I knew, but I knew it. I've never been more certain of anything.

I'm very glad I chose the bmx. I did not have reconstruction because I didn't want any more medical treatment than I had to have to get rid of the cancer. All I wanted was to walk away from this clean and live on. The only thing I would do differently is that I would walk out on an obnoxious radiologist who tried to bully me into having radiation instead of a bmx against my will. I should never have put up with him.

Mar 30, 2022 07:32PM ilovecatsandfiddle wrote:

Reading this thread was so enlightening and touching. I've struggled to find people who have DCIS and I was finally able to bring myself to be proactive and look. Thank you to all who shared! My surgery is scheduled for April 15. I have DCIS stage zero and another spot that is DCIS with micro invasions at stage 1A. All of my factors added together have helped me make my decision -- plus my gut instinct. I'll be getting a BMX; and I really hope I feel this way afterwards. Here were the factors at play:

I am 41 and have small boobies. My family has three generations of breast cancer in every women on my ashkanazi side. I have the CHEK2 gene (which doesn't seem half as scary as BRCA, however it still made it all that much more real). The stereotactic biopsies were very, very painful. And, I wasn't crazy about the MRI experience (I had a panic attack in the middle of it). So, perhaps if one of these boxes were not checked, I would've felt more comfortable with the lumpectomy. Although I'm still scared of the surgery itself, my instincts feel so strongly that this will be the right decision for me.

I do feel that it's so different for everyone. It was very helpful to read about all of your experiences. Thank you!