Diagnosed with DCIS after first mammogram. 32 yrs old.

hi just wanted to jump in as a fellow survivor with a chek2 mutation. I was mid 40’s when diagnosed. I opted for a double mastectomy and reconstruction. My sister also has chek2 mutation with advanced stage ovarian cancer. We were diagnosed 6 months apart and are a year apart in age. I tell you this because I think chek2 is often minimized as a risk. And while ovarian cancer is not really linked to chek2 I think it and other cancers will be. Now you have stage 0 DCIS. But I was stage 1 IDC. So there was no way I was going to have a lumpectomy. For me the risk is too high. Our situations are slightly different. These decisions are tough. Let me know if you have any questions. Or if I can help in anyway.

I absolutely think that about chek2 also. I have 3 sisters - one had ovarian cancer - yes, everyone says ovarian is not linked to chek2 and they dismiss it as a risk (fortunately she is doing well). My younger sister had a rare cancer also not linked to it (chondrosarcoma) and she died within a year of diagnosis. This is why I was tested and why I made the choice for bilateral mastectomy and didn't even consider lumpectomy (even though a really struggled with the reality of it). Neither of them were or have been tested for chek2 but I would be very surprised if they didn't have it as well.

I usually have moderate to low issues with side effects from drugs, but tamoxifen wiped me out. On the other hand, toremifene, a sister drug, has been absolutely fine.

My initial goal was 5 years, but now I'm aiming for 7 years, and to be honest as long as the side effects are so minimal, I'm hoping my oncologist will just let me stay on it.

I guess what I mean is, you don't need to worry about how your body will react to the drugs - you can just try them and find out.

There are departments that focus on high risk women like yourself. If your doctor is not part of a department like that, I think it could be a great idea to seek a second opinion/supplementary consultation from a specialized department. They will be the most up to do date on the research and options. For example, tamoxifen is only one of a family of several SERM drugs. Tamoxifen is one of the oldest, cheapest, and most studied, but it is not necessarily the best (either in the sense of side effects or in the sense of efficacy) for every woman for every need.

A great oncologist should be able to counsel you about all your options, including fertility preservation, follow-up screening options, and possible timelines for decision making. For example - could you try hormonal treatment and see whether it agrees with you, and then opt for a mastectomy later. A good oncologist should be happy to have you consult with another oncologist with greater specialization or experience, and to coordinate with them for you treatment.

I'll also say that social workers/social work services can be very helpful for talking through options with someone who has basic background health knowledge, counseling skills, and knowledge of your local healthcare/insurance landscape and cost and support options.

I had just a few conversations with a social worker from Sharsheret, but it made a huge difference to me feeling confident and supported.

wow that’s interesting about your brother. All of my siblings carry the same chek2 mutation. Two of us have cancer in our 40’s. The other two don’t. Will be interesting to see what happens. The odds of all 4 of us having the chek2 mutation seems unlikely but here we are.

so happy for you! 😊

Hi! That must have been a real shock to learn this concomitant w/ your Mother's experience. I'd think that could intensify certain challenges in your decision-making now, because you're directly watching the consequences of one type of breast cancer, presumably w/ a much more serious diagnosis w/ a less promising prognosis given her age.

Three thoughts based on my own experience:

First, I'm new here w/ current evaluation for new R BC w/ possible mets, but had a L mastectomy at 39 in 2006 for extensive DCIS that turned out afterwards (after I had pushed the doctors to do watchful waiting) to have been ADH—or, well, debatable. Docs at Mayo, Vanderbilt, Duke, and UNC argued about it—even had a case conference. What was disturbed me a lot was that I went in very informed, after the surprising dx that upended my entire busy working & parenting life, and asked specific questions about a disparity in radiology interpretations between two facilities that led me to question the dx. I suggested watchful waiting & wanted to discuss it w/ the radiologists, but was completely invalidated. But, it turned out that I'd been on the right track—which didn't exactly endear me to the pathologists. One even retroactively removed their "wrong" report from my official file, but another oncologist figured it out and added it back (I'd gotten all of my medical records at that point, suspecting they'd do this.) Had they done an unnecessary mastectomy on a 39-year-old single mother, one who'd explicitly raised concerns that should have been explored via a third opinion BEFORE the surgery?

I was dx in late 2005, when the NCI had just come out with "overtreatment" concerns, and to fight for "watchful waiting" was very difficult. In retrospect, I would have planned to have a mastectomy, later, because the extensive high grade florid hyperplasia or whatever it was would likely have been problematic over time, and I'd have been facing MRIs every six months. But—very importantly— I would have done it w/o panicking about needing chemo, dropping out of a doctoral program necessary to move up in my career, losing a few consulting clients, lacking f/u care for so much blood loss that I had a ferritin of zero and ultimately had to have an iron infusion a few years later, and creating a medical crisis that caused my congenital EDS to go into overdrive and led to permanent disability and career loss today. I'd have planned it, while watching it for awhile.

Related to potential iatrogenic harm, even 7 years later the well-meaning radiologists were insistent I should have one of those wire-type biopsies due to potential DCIS on the R breast, but I declined, despite their opposition, opting for watchful waiting. Three years later, it involuted, and—this is so funny— a new doc I had said, "Wow. You're so lucky that Doctor X insisted on watchful waiting!" Like it had been their idea and I had been a hypochrondriac who wanted the biopsy. I've found as a female patient—particularly w/ EDS but even this—that you just can't win. There's an org psych thing about medical culture, where however well-meaning, they reinforce each other and subconsciously discount medical any medical insights raised by patients. They're not evil—just human. It's an artifact of the field.

In other words, please think for yourself and, whatever you decide, try to stand in that ground (and have a relative or close friend present) if/when one or more medical professionals try to override your reality. Make the decision best for you outside of that realm, after considering their and others' opinions, but try not to collapse into a 2-year-old mentally when in the presence of medical "authority." We all do it.


Second, despite the problematic, overtreatment at the time, I was fortunate to be treated at one of the best institutions in the world that's located nearby, and a "silver lining" of mastectomy w/ reconstruction was that I came out of there w/ a figure like Barbie. I was single at the time and had always had small breasts (and was a size 2). The plastic surgeon really enjoyed doing the implant reconstruction w/ r implant for assymetry, and it looked and still looks AMAZING. It's funny—not that I was seeking a lot of male attention, but boy, men sure do notice a chest! I thought it was hilarious that I looked better after tx. Just sayin.' Sure, I've got a faded scar and I lost sensation on one side, but when I think what women had to go through in the past given unfair body image standards and no options . . . .

Third, each to her own, but you're young, and there's watchful waiting. I'm a scholar but first and foremost I'm a Mom of thriving, joyous adult kids—hardest and best thing I ever did. I didn't breast-feed long—just 3 months w/ each—but it was so important to me and such a great memory. I'd be concerned that you might be getting sucked into a fast-paced medical sorting-process that, again however well-meaning, is biased toward intervention, intervention, intervention. And intervention can be amazing—a great blessing—as long as it's in the back seat, driven by you and your Quality of Life. Many people die WITH breast cancer, and many more with DCIS. DCIS can involute. If it were me—can't speak for you—knowing what I know now, I'd at least hold off on all hormonal therapy, radiation, chemo, or additional surgeries—take a breather, and check back in in 3-4 months. It's not inflammatory, or even Stage 1.

I'd hate to see this treatment machine take over your identity and life when you've got your best decades ahead of you, to take away one of the most meaningful experiences a woman can have because of a 2% ? increased absolute risk per year. You could give all of that up. go through these challenging therapies, and then get slammed in a car wreck at 48. Risk ratios should be understood very carefully and calmly, not in a panic w/ tx providers—they mean well, but it's their culture & their job. YOU are in control here and can step back for a few months to ensure you've given it enough perspective.

God bless and best of luck in deciding what's best for you!

Hi @baileyjumper. We really have to get tough with ourselves to get through some aspects of breast cancer (or the threat of future bc) … in some respects I think it was easier for me to not have options. Mine was already invasive cancer when it was found and I wasn’t given a choice, I had to have a mastectomy. I understood what doing nothing would mean (=death eventually). I hated my only reasonable option!! And I’m trying to accept that my carefree self no longer exists. (It’s actually going fine, I’m not complaining!) But in your case, I can see how extra difficult it is to anticipate getting future cancer (which probably seems inevitable) and the need to scan and biopsy everything religiously … it’s not what you would ever imagine your life would be focused on at your age! It really is unfair. But … I know you can do this!! You can get through this next step - surgical consultation, then the next step, then the next. Please don’t try to do it alone … get support!! We are here for you. The online support group is wonderful … I encourage you to accept the offer from the moderators to join. It helped me immensely. Hang in there!!