Just diagnosed DCIS grade 3 after many benign biopsies

triscuit

I joined here in 2017 with questions after finding out I was CHEK2 positive and a many-year (close to 20) history of nipple discharge. I had I think 3 ultrasound guided biopsies around that time and all came back benign intraductal papillomas. Although the CHEK2 put me in a higher risk category there is no breast cancer history in my family - but lots of other cancers (including two sisters, one with ovarian and one who passed away from chondrosarcoma) which was whyI had genetic testing done. My breast surgeon was content to monitor with annual mammo/ultrasound alternating with MRI every 6 months. I was ok with that although somewhat bothered by the literature suggesting papillomas should be excised because a small percentage are found to be accompanied by cancer on surgical excision. All was pretty quiet for a few years.

This September I had an MRI-guided biopsy on my right breast. Once again papilloma. But I decided to seek a 2nd opinion from Dana Farber high risk clinic about my CHEK2 status, mutliple papillomas and family cancer history to just see what another expert would do in my situation. The surgeon I consulted with was very thorough and agreed to do a review of all my imaging and biopsy results with her radiology team. She explained to me and showed me my MRI images which I hadn't seen before, and how "busy" my breasts were. She said the CHEK2 may not have anything to do with the papillomas, and that the papillomas may not increase my risk for breast cancer but they sure do make it harder to detect if you do have it.

A week or so later she called me and said there was an area of non-mass enhancement in my LEFT breast on my most recent MRI (the one from September) that she "didn't like" and she recommended a biopsy. I got that MRI-guided biopsy back at home (DF is 4.5 hrs from me) and this one hurt way worse. Which got me thinking how much more of this monitoring I want to take. And yet I was stunned when yesterday I got the call that this time the biopsy results show DCIS.

Biopsy info includes that it is nuclear grade 3, ER+, PR+ (HER not tested). Solid, cribiriform and involving paipillomas, necrosis and microcalcifications present, along with intraductal papillomas, fibrocystic changes, and sclerosing adenosis. I don't know what to ask overall but I did wonder about the signficance of the CK5/6 result on the biopsy report? It says "shows abnormal loss of staining with an atypical epithelium"

The surgeon at DF told me when I consulted with her that if anything abnormal was found on biopsy she would recommend bilateral mastectomy because both breasts are so busy and my history and CHEK2 status. I'm meeting with my surgeon here on Wednesday. While I'm relieved that it's not invasive, I'm just not processing that this is actually the case now instead of a hypothetical to probably be headed to mastectomy.

Thanks for reading and I appreciate the knowledge I'll already gained from this community.

kaynotrealname

I'm so sorry, Triscuit. I had an IDC diagnosis but also had very busy, large breasts. For me my double mastectomy was a no brainer and I never looked back. Was relieved to be rid of them. I am two and a half weeks into recovery from a DIEP right now and so far so good. I think I'm going to like my new breasts way more than my old ones and my stomach is going to look fantastic. I know you are in complete shock and horror right now because we all are at diagnosis. But it does get better. Good luck with everything and I'm so glad to read you have access to a great hospital.

cancerian

I had a history of nipple discharge that started in 2020 same breast. U/S guided biopsy was benign and subsequent diagnostic mammo did not show anything worrisome. fast forward to 1.5 years, i have DCIS in same breast spanning a rather large area.

I wonder if something was missed on my biopsy in 2020.

Genetic testing is negative for me.

wishing you the best outcome.

monarchandthemilkweed

hi! I have the chek2 gene as well. As do my three other siblings. Me with breast cancer. My sister with late stage ovarian cancer. I had a double mastectomy because of chek2. A new study reports that people with chek2 and a history of breast cancer have a high chance of breast cancer in the other breast. For me it’s a no brainer having watched my sister fight late stage ovarian cancer. The common belief is that chek2 is not that dangerous of a mutation like brca genes are but I think that it is judging from my family. I don’t regret the mastectomy at all. Yes it’s life changing. But so is cancer. Good luck with your appointment and your decision makin

triscuit

Thank you @kaynotrealname. I'm glad you are doing well so far in your recovery. That's good to know how you are feeling about the DIEP even this early on. Thanks for your note.

@cancerian I wonder about that too with previous biopsies missing dcis that was there already. I guess you can't know. In some ways I'm grateful that I got as long as I did without surgical intervention and thankfully it's not more advanced. Hope you are doing well and thanks for your response.

@monarchandthemilkweed - yes, even most medical professionals I've met kind of dismiss CHEK2 and don't know much about it. Fortunately my breast surgeon and gynecologist at least took it seriously enough to follow increased screening protocols. I'm glad to hear you have no regrets about your mastectomy. I'm so sorry to hear about your sister. Losing my sister to cancer and watching her go through that is what makes me proactive about this, even if I really don't want to be. Just curious if you had your ovaries removed also based on your sister's cancer?

I'm 54 and in a relationship for the first time in so long and it just is so much harder than I expected. I always thought I wouldn't hesitate to just "get rid of them" but now that it's here I am unsure.

monarchandthemilkweed

yes I did have my ovaries removed, the last of three surgeries I had in one year. I'm 46. That too has been life changing. All of then sudden I'm in menopause. My libido is practically non existent. But that's my goal for this year. To begin to rebuild my relationship with my sexual self and my husband. Our actual relationship is fine, thank god.

Do you know if your sisters had the chek2 mutation? Ovarian cancer is not commonly connected to the chek2 mutation but my feeling is MANY cancers will end up being related to the chek2 mutation. If I understand the role or job of the chek2 gene when not mutated it is supposed to suppress or inhibit the growth of tumors. So it makes sense if an individual has a mutated chek2 gene that cancerous tumors could grow anywhere and not be suppressed. The fact that chek2 is more related to breast and colon in my opinion is because those are just some of the most common cancers.
Thankfully my sisters has not died yet but she is late stage and her treatment is not curative. It’s been very hard on her - she is still raising kids and she is struggling. The sister that I knew and deeply loved is gone in a sense. I’m so sorry you have so much cancer in your family. I’m not familiar with the cancer your other sister had and passed from. Cancer hits some families so hard and it’s so unfair

It will be 2 years in May that I had my mastectomy and reconstruction. Actual implants were placed in December so it’s just been a year. I don’t have nipples anymore. I miss them. I think nipples are attractive but I haven’t decided what if anything I want to do in regards to nipples and my scars. Recently I’ve been liking how my reconstructed breasts look. No they don’t look anything like my natural breasts. But I can see beauty in them.

Please continue to reach out for support

triscuit

@monarchandthemilkweed thank you! I don't know if my sister who died had the chek2 mutation. I didn't test until after she passed away. I don't know that she had any genetic testing done, but she did have genomic testing on the tumor (a malignant tumor in her hip that starts in the cartilage - very rare and very aggressive and resistant to chemo, and metastasized to her lungs. She passed away within 1 year of diagnosis). My other two sisters including the one with ovarian cancer have chosen not to be tested. My mom has also not tested although I am trying to convince her to. My dad passed away due to prostate cancer. I suspect he was the carrier but there is also a fair amount of cancer in my mom's family. She has fortunately been pretty healthy.

I definitely think you are right that breast and colon are the more common ones but that doesn't mean these other cancers are not related to chek2. I highly suspect they are. I have had so many other things too - parathyroid adenoma and uterine polyps among other benign findings. I have been told that has nothing to do with chek2 but it's suspicious to me.

I'm sorry your sister is going through this and you with her. I know what you mean about the sister you knew being gone. My heart goes out to you both.

I am trying not to get too far ahead of myself before I meet with the surgeon but I thank you for sharing about your thoughts and experiences about everything.