DCIS dx recent with chek 2, high grade? Decision on treatment?

Toughiebird

I need help. Just dx with small (3mm) DCIS in left breast; went into 5/16 surgical biopsy procedure with path saying "borderline", May 16 surgical biopsy turned into lumpectomy and all taken out with 5mm clear margins. But DCIS identified, non invasive, high grade, ER- and PR- ( should they have told me HERS? I don't have that?). I am chek2 positive i just found out 6 months ago in blood test. and I am BRCA negative. sister had DCIS 9 years ago. Father side family has various cancers each generation. Now going crazy on what treatment, after several consults with oncologists, reconstruction plastic surgeon and radiologist? I am learning minute by minute but understand if I do NOT have double bilateral mastectomy, I need to begin radiation in about 2 weeks... with this double negative, tamoxifen or other meds seems not effective...is that right or i guess wont fight any double negatives. Can anyone offer advice or help? I am 59 years old - terrified of a re occurrence or new cancer ( that may not be as lucky as a small non invasive DCIS). stats confuse me a little and seem inconsistent from different dr. Grateful and thankful for any advice or experiences.

MinusTwo

Lumpectomy for DCIS normally means radiation. They do not check HER2 status for DCIS, but I'm assuming they did SNB (serial node biopsy -s) to make sure it's contained?

Stay off google. Do your research on a trusted site like this one or NCI or a teaching hospital site like Mayo Clinic.

Toughiebird

many thanks. just discovered this site so yes...yes, contained, non invasive - then why are they ( 3 top oncologistss saying prophylactic bilateral mastectomy is a reasonable choice... one as even in favor of it - vs radiation?

MinusTwo

I had a bilateral mastectomy. I didn't want to ever fool with it again. They found other things of course when the labs were finished, but still DCIS with clean margins & clear SNB. Because I had a BMX, I did not need rads. I would think a lot depend on your age & your health.

Unfortunately I did have a recurrence in a lymph node up by my collar bone in 2 years. And it changed to IDC and to HER2+. So neo-adjucant chemo, then surgery, then more chemo because I did not have a complete response, then rads, then Herceptin for a year. No way to second guess this beast. Just do the best research you can, ask lots of questions and pick a doc that you can trust going forward.

Annette47

Most likely the reason they are recommending a bilateral mastectomy is because of your Chek2 mutation. I don't know that much about that one, but if it places you at higher risk for breast cancer like the BRCA mutations do, then the concern becomes less about this current cancer and more about how to prevent it from happening again. I have two good friends who were BRCA positive and both chose bilateral mastectomies for this reason - one prior to any diagnosis; one following a very similar diagnosis to yours. I wasn’t tested for everything, but as an Ashkenazi Jew they were most concerned with BRCA. I’m not sure what I would have done if I tested positive, but I didn’t so felt comfortable treating my small cancer (DCIS with micro-invasion) with lumpectomy, radiation, and Tamoxifen.

Yes, if your cancer is ER-, then Tamoxifen will not be effective. It acts by blocking the estrogen that some (ER+) breast cancers feed on. Since yours doesn't need estrogen to survive, blocking the estrogen won't help anything.

Further down this page there is a forum for people with genetic mutations - hopefully someone there will know more about the particular mutation you have and what it does to your risks of recurrence and new cancers.

MTwoman

Toughiebird,

the phase that you're in now (knowing you have a bc diagnosis, but don't have your team together and your plan in place) is the most anxiety provoking. You're on a steep learning curve, but you can do it. I had a similar diagnosis, ER-/PR- (they did check and I was HER2- as well). I agree with MinusTwo, with a diagnosis of DCIS, either lx + radiation OR mx is typical; and I agree the Bilateral mx is most likely being recommended based on your chek2+ mutation. The ER-/PR- means that endocrine therapy (like Tamox or an AI) has not been shown to provide an added benefit (although my MO said he'd prescribe it for me if it would emotionally make me feel like I was "doing something" to prevent a recurrence. I declined as I didn't want SE with no benefit). So after your surgery (if you decide to follow their recommendation for BMX) and reconstruction (if you choose that option) your treatment will be complete. I had to have mx as I had multi-focal DCIS (several areas scattered in different quadrants). I have been NED for 14 years.

BarredOwl

Assuming no additional disease is found upon mastectomy (if elected) (and adequate margins), then I agree no additional treatment would be indicated.

Many oncologists, primary care physicians, and gynecologists are not as knowledgable about genetics as would be desired.

Is the particular CHEK2 mutation you have known to be "pathogenic"? Or is it a variant of unknown significance (VUS)?

What did your Genetic Counselor recommend?

BarredOwl

Toughiebird

TY all so much - my chek2 is a mutation ( the S2428..) not just a variant but it is not the 110del... that i understand a lot of the published research is on. This is all helpful. Im going crazy because i in NYC with great top Dr but you are right, no committed TEAM yet - various radiologist, plastic surgeons, 3 oncologists with diff povs at 3 top related hospitals. i heard with radiation, i have a 5-10% re occurrence in left breast 9 the one with the DCIS just removed) and 6.7% in the other right breast? don't know if these stats are correct? i heard if dbl - its a 1% chance of a future incidence? i ma truly getting mixed recommendations... can someone briefly relay the physical/emotional impact of a prophylactic bilateral mx , if i choose that? i have seen one surgeon and although i dig into the learnign - no one has talked to me about how they felt, recovery, etc. i know each indication is different. TY

MTwoman

Toughie, I don't think that there is a standard "physical/emotional impact" of PBMX. Many women heal really well, recovery quickly and feel good about the amount of risk reduction they have achieved. Others have issues with healing and their recovery takes longer (drain tubes staying in for much longer than anticipated, seromas/hematomas or LE) or they struggle more with the mx. IMO it also depends on if you plan on reconstruction, and if so, do you go ahead and start that at your surgery. I think some of the other forums might have information that can help you make the best decision for you. Forums like: at high risk for bc (may have others with genetic mutations who are advised on pbmx), sugery- before during and after (look at what to expect), reconstruction (again, what to expect) AND the living without reconstruction after mx (to see if this choice might fit better for you). If you don't seem to get your answers on these forums, then start your own thread in one of these forums, OR the just diagnosed or DCIS forums. Sorry there isn't an easier answer.

Toughiebird

Thats realy helpful. Thank you

MTwoman

You're very welcome. Please know that it gets better and do let us know how we can help.

Toughiebird

Thank you. Today I had a consult with a genetics specialist counselor and then genetics specialist Dr. .i learned that there are 2 types of chek 2 ( mine was a bit less risk) but with my family history, the chek 2, I'm 59, and the fact Ive had one DCIS in left breast - they said % were about 10% chance of new cancer occurring in right breast (over next 10 years) and about 5% re occurrence in left breast (after radiation). taking tamoxifen would only reduce risk in future of an ER?PR+ which i did NOT have this time but i guess not a predictor of future. These Dr were steering this away from pbmx but said its really my threshold for risk but that these stats and characteristics for my case did not warrant a reco for pbmx...im so confused because even with numbers like 10% and 5%, I am terrified of a returning invasive cancer and they made it seemed like radiation was a very excellent choice and bmx would be a bit too far - though reasonable option to consider. hard to know what these numbers are all about and I am now so confused. she did put the che2 in perspective which was good.

MTwoman

unfortunately, toughie, there isn't a "right" answer. As your providers indicated, they make recommendations, but your personal tolerance for risk does need to be taken into account. It sounds as if their recommendation is not for pbmx, but they would in fact perform that if that is your wish for maximum risk reduction. There are women here who have chosen each way. If it would be helpful, you could read threads about why women have made these choices, here is a thread on CHEK2 under the high risk for bc forum: https://community.breastcancer.org/forum/47/topics/817771?page=4

Take them time that you need to feel confident in your choice. Your team sounds supportive, I'm glad you've gotten their information for your consideration.

Toughiebird

Thank you so much so helpful. the chek2 info is changing so rapidly too. i will check out above link.