Second DCIS, same breast, strong family history -- remove one breast or both?
I had DCIS 18 years ago, treated with lumpectomy and radiation; I was 41 and premenopausal at diagnosis. I tried Tamoxifen but stopped after 6 weeks because I couldn't tolerate it. Now I have DCIS again, same breast. My sister was diagnosed with advanced invasive breast cancer at 39. I tested as BRCA negative 18 years ago.
I know I need the DCIS breast removed, and I'm fine with that. I'm debating whether removing the second breast is also a good idea, especially if it can be done with nipple-sparing so I can retain some sensation. It's unlikely I'd be able to tolerate oral endocrine meds like Tamoxifen any better now than before.
Anyone know how much a second DCIS diagnosis increases the odds of a new cancer in the unaffected breast, down the road? Especially when combined with a strong family history?
I meet with the surgeon next week; I want to be prepared for likely recommendations. Just want to get my head on straight ahead of time if possible.
Thanks.
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Hi Melissa, I'm not sure I have a good answer but wanted to offer a couple things to consider…
They test for considerably more genes now than they did when you were first diagnosed. You might consider another round of genetic testing.
Perhaps a breast MRI could help identify if there's any areas of concern in the other breast. Maybe you had one recently, it's not clear if your second DCIS was picked up on mammogram or what.
Do you have the Er/Pr/Her2 status of this second cancer? Sounds like you must, given the comment about tolerating tamoxifen. If you think meeting with medical oncology before making a surgical decision would help, you should feel empowered to ask for it.
Like you, I've dealt with this twice. It's not fun, and definitely not fair! However, I did find that my prior experience was very helpful when having those initial appointments to come up with the plan. Good luck and keep us posted!
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I was diagnosed with DCIS and ended up after 2 surgery’s having a bilateral mastectomy. Pathology showed minor DCIS in the “good” breast. I’m so thankful I went ahead and had the bilateral.
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Thank you. Those are good ideas. More genetic testing might be wise; I'm just not sure I can get it done before the surgery, which I expect to happen in the next few weeks. I'll reach out to the hospital and see what they say.
I believe this second cancer is ER positive, but I didn't see anything about PR positive. First DCIS was positive for both. Can't have a breast MRI because of a magnetic implant behind my breastbone. (Long story.) Ultrasound was clear for the other breast, though.
I'm sorry you've dealt with this twice too. And yeah, I also feel much more prepared this time, and much less panicked. So at least there's that. :)
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Good to know, thank you.
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