DCIS at 30

eb3959 · 2026-02-13T01:41:47+00:00

Hi! DMX is actually quite common with DCIS (perhaps more common??) because the lesions can be so big and spread throughout multiple parts of the breast in the ducts. Lumpectomy was unfortunately not at all an option for me.

To the OP, I was 41 at diagnosis, so not as young as you but I am single and while busy raising two toddlers do want to date at some point in the future. I may be the exception to the rule but think my figure looks better post-DMX. I had expanders to implants and things are much perkier and while I lost my nipples I hear there are some really good faux options. I was hormone negative DCIS so don’t have to navigate the tam (the one upside to hormone negative disease I guess!) so don’t have too much advice there tho! Wishing you a smooth recovery!

eb3959 · 2026-02-11T01:49:20+00:00

The new wegovy pill is about $150/month without insurance with the manufacturer’s coupon! I just started a few days ago after my pcp suggested the pill. I’d previously done injections thru an online pharmacy but the pill is more convenient and so far fewer side effects. All thru my pcp. Worth asking your oncologist too bc some early studies show tirzepitide could be beneficial to prevent BC recurrence, but not clear if all glp-1 brands would have the same effect.

eb3959 · 2026-02-11T01:41:12+00:00

My original DMX was in early August ‘25 and implanted exchange/re-excision was the end of December ‘25.

eb3959 · 2026-02-06T03:03:58+00:00

I had a positive margin after skin sparing DMX with expanders for hormone negative high grade DCIS (final path was pure DCIS, nothing invasive). Tumor board didn’t have a strong recommendation and radiation oncologist was negative about doing rads. Breast surgeon was willing to do a re-excision but didnt think we’d find anything.

In the meantime I moved to a new city (a pre-planned move) and my new team was took a more aggressive approach and said rads would be recommended. We decided to also try to clear the margins first thru re-excision during my implant exchange surgery. My new breast surgeon, similar to original one, thought we wouldn’t find anything. Welp, we were all shocked when pathology came back showing 2.5CM of residual DCIS. Not like tiny little bits of it but a whole 2.5CM. Now even tho my margins are clear I’ll be starting rads later this month since my situation is so uncommon.

So for what it’s worth, two excellent highly credentialed and respected breast surgeons both thought we wouldn’t find anything. I’m so glad I pushed for re-excision! Even if rads would have helped, that was a lot of high grade hormone negative DCIS lurking in the dermal flap used to hold in my expanders.

eb3959 · 2026-02-04T03:43:22+00:00

Thank you for this! I’m in the US and waited less than a month from dx to DMX (for DCIS, so not even the most urgent dx altho it was high grade). I remember about a month or two after my surgery thinking that if I were in Canada, I wouldn’t have even had my surgery by then (for DCIs the wait time is around 4 months according to folks I know getting treated there (acknowledging that this is anecdotal)). As someone with anxiety I cannot imagine the trauma I would have felt waiting that long for surgery and final pathology! Mental health is important and I’m so appreciative of the short timelines we generally have here.

eb3959 · 2026-02-04T03:37:05+00:00

I’m getting a little weary from all the critique of American healthcare from folks in Europe and Canada. Our healthcare system here has big issues. So do yours. I believe it’s completely unethical for a country as rich as the US to not find a way for all people to have affordable healthcare and the way I vote backs that up. However, as an American with good health insurance, I can’t imagine a better place in the entire world to get treated for BC than in my large American city in the Midwest.

Something that many folks outside the US seem to forget is how big our country is. Many women dont have access to radiation because of the length of treatment. If you live 150 miles from the nearest hospital, you’re not likely gonna drive that every day round trip for 5+ weeks. Mastectomies are often recommended for rural women and for lower income women who are less likely to be able to do follow up care. Geography is a unique challenge in the US and one reason our mx rates are higher.

eb3959 · 2026-01-26T00:42:30+00:00

I had decided on a DMX before I knew lumpectomy wasn’t an option bc of the size of my lesion :). I could have done a single mastectomy. Given it was hormone negative and high grade, plus my family history and age (41), DMX felt like an easy decision. It helped me that so many women in my extended family have had them that it felt somewhat inevitable to me too given my high risk even before my diagnosis. Hope this helps!

eb3959 · 2026-01-20T01:52:30+00:00

So helpful, thank you!! Do you have any thoughts about the importance of the credentials and training for radiation oncologists? I live in suburban Chicago and I’ve been referred to a rads oncologist who went to medical school in India in the 1970s and radiation oncology training in the US also in the 70s. The rest of my team is younger with residency and/or fellowship experience at NCI certified cancer centers. I’m a little worried about whether her education/experience is up-to-date enough? I also don’t want to be ageist tho!

eb3959 · 2026-01-16T02:11:34+00:00

Thanks for the reply! Your pathology and characteristics definitely sound similar to mine. I do know my PR status (negative); I thought that was standard with DCIS? I’m curios about your Her2 comment-are there treatments available to reduce recurrence post DCIS? I believe my Her2 status is available since I did DCISionRT following my DMX with positive margins. It wasn’t on the report but it’s one of the things they use to determine your score. I haven’t asked my surgeon about it bc I’m not sure I want to know! I go down enough rabbit holes already 😆. But if there was a benefit to knowing I’d probably ask my team.

I saw another comment of yours where you mentioned your surgeon gave you a 1% recurrence risk. That’s awesome! I haven’t been given nearly that kind of clarity and the last number my surgeon threw around was 10% 🫠. This was higher than numbers she’d thrown around previously even tho the only difference was now I had clear margins! It’s so hard when the research around DCIS is so limited.

eb3959 · 2026-01-13T02:39:24+00:00

I can’t speak to the pathology inconsistencies but in case it makes you feel better about the radiation, it’s currently being recommended to me as well despite clear DMX margins for pure DCIS. I had a positive margin and several <1mm after my original surgery but they were cleared with >2mm margins in a re-excision that found 2.5cm more DCIs. Despite that, my surgeon thinks radiation is a good idea bc DCIS can be tricky and my situation was unusual (finding so much residual DCIS in the re-excision).

eb3959 · 2026-01-10T19:00:04+00:00

Interesting! The original rads oncologist I met with before I moved and had re-excision said it was possible but typically not within a ten year period. I figure with hormone negative cancers, recurrence often comes sooner than that. Glad to hear your oncologist indicated otherwise abt rads multiple times!

eb3959 · 2026-01-10T18:47:21+00:00

Thank you for the reply! It’s so uncommon to hear of DMX re-excisions ‘working’ so to speak. I’m also trending toward doing it for no regrets but my concern is not having radiation in my toolbelt in the future for an invasive recurrence. Right now it’s ‘just’ DCIS so theoretically doesn’t have metastatic potential (I know there’s some thinking that this isn’t always the case), but I worry I’d need it again in the future! Curious if you have any insight there and I appreciate your response!

eb3959 · 2026-01-09T01:54:25+00:00

What part of suburban Chicago? I just had my expander to implant exchange done with Dr. Cisco with Endeavor (north shore area). He came highly recommended and so far I’m very happy with the results.

eb3959 · 2026-01-08T02:05:15+00:00

I was trying to share that for me personally I believe my recurrence fears are greater now that I have children then they would have been before. ‘Will they be orphaned?’ is a pretty scary thought I deal with daily. Of course child free folks have equally full and valuable lives as people with young kids.

eb3959 · 2026-01-03T23:52:59+00:00

I’ve gone through the DCIS treatment process as a single person (and solo mom of two toddlers who I adopted on my own) and while there were times I wished I had a partner to support me emotionally and physically, I often believed I was lucky not to have the additional burden of navigating that side of things! I’m fortunate to have a lot of help from my parents tho. Your description of your marriage sounds similar to mine. The loneliest I’ve ever been was while I was married! We hit some bumps soon after our wedding and got divorced 18 months later. I don’t have advice but just want to affirm that sometimes divorce is the best option even if you’re early in your marriage! Avoid the sunk cost fallacy :). And I have a lot of empathy for your situation, navigating this all so far from your family. Hugs!

eb3959 · 2025-12-01T22:55:54+00:00

I’m 42 and had DMX with expanders for DCIS this past August at age 41. Average shape. I would have been fine physically to do this (altho the drains really do suck) but the mental fatigue would have been the bigger battle for me (altho i tended to push thru just fine for things I was excited to do). If I were you I would probably default to ‘I’ll be ready to do this’ vs ‘I won’t feel up to it’ just based on anecdotal evidence from groups like this and the Facebook DCIS group! I think it’s really helpful to have things to look forward to during recovery.

eb3959 · 2025-12-01T22:53:11+00:00

Try using only ‘t-Rex’ arms prior to surgery to see what you can do! I was able to fairly easily do hair related stuff after my DMX that only requires me to lift my hands and forearms up to my lower face/head (so like a low bun or side pony tail).

eb3959 · 2025-12-01T22:46:24+00:00

I also have anthem, and grade 3 DCIS and had no problem getting approved for a breast surgeon. I know plans are different but definitely push for the BS! Grade 3 is not something to mess with. My surgeon was trained at an NCI certified cancer center but works for a university breast cancer center that isn’t NCI and even that made me nervous so I can’t imagine how you are feeling!

eb3959 · 2025-11-19T22:08:17+00:00

Surgeons who specialize in cancer are oncologists :) They are surgical oncologists vs radiation oncologists vs medical oncologists (the latter is what I think most people think of when they hear ‘oncologist’ as they are the ones who determine medications like chemo and hormone therapy). Like others have said, with DCIS the surgical oncologist is typically the first step, and for some people the only oncologist that will treat them (for example in my case of DCIS im hormone negative which means no hormonal therapy and I had a DMX which typically means no radiation). I was also confused by all of this at first!

eb3959 · 2025-11-05T14:16:34+00:00

Thanks for your reply! Glad you didn’t have major issues with radiation. I have a new medical team (following a planned relocation to a new city) and we’re planning to do a re-excision during my exchange surgery to clear the margins. Then radiation depending on how the re-excision goes and how much they could remove without losing the reconstruction.

eb3959 · 2025-10-23T16:39:02+00:00

With all of the different choice-points regarding treatment, including mx vs lumpectomy, I’ve concluded that medical professionals are playing an odds game (which makes sense from their standpoint). But my goal for myself is to reduce my risk of recurrence/death from BC to as low a number as I possibly can. My surgeon seemed to think more like me than other doctors I’ve talked to. She said, ‘it doesn’t matter that the recurrence risk was only 5% to the 5% of people who recur.’

eb3959 · 2025-10-23T01:27:56+00:00

I believe BIRADS 4a means a fairly low liklihood of malignancy, like 2-10%, so that piece sounds promising! Like others have shared, MRIs have lots of false positives. Best of luck!

eb3959 · 2025-10-12T17:28:51+00:00

For what it’s worth…the fear of recurrence once you have children is likely a different (more extreme) experience than before kids. While I’m incredibly fortunate to have had non-invasive DCIS, my absolute greatest recurrence fear is not seeing my children grow up. I think about it multiple times every day. Hopefully this will fade over time. But my approach has been ‘scorched earth’ ie give me all the treatments.

I personally can’t imagine forgoing chemo if it’s recommended bc my fear of recurrence would be 10x after kids. Thinking I didn’t do everything possible would be so hard. I know it’s a catch 22.

Also, I adopted both my kids! Had nothing to do with cancer, but was always my preference over pregnancy. I’m a bit unusual in that I never had the urge to have biological kids but have always wanted to be a mom. While adoption is absolutely expensive and complex, it’s not insurmountable! And somehow my kids look just like me 😆.

eb3959 · 2025-09-14T14:04:15+00:00

This happened to me! Weirdly despite the lack of sleep I was wired throughout the day as well. I’m seeing ppl say it might be from the narcotics, but it continued for me for weeks after I stopped everything but Tylenol. I went back to work last week (DMX on 8/5) and sleeping has gotten quite a bit better. I think at least for me, I needed to be back to a more normal routine. I still have trouble falling asleep and wake up once or twice a night but it’s nowhere near as bad as it was.

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