Second Opinion

When I was diagnosed with DCIS at the tail end of 2012, I did not get a second opinion about the course of treatment. Because I was BRCA2+ and had been planning a prophylactic mastectomy anyway, the DCIS only sped up my timeline a bit – really just a few months. I was planning to do it during my summer break in 2013, but instead I did it that January and took medical leave for the first part of the spring semester. While I knew that many women have lumpectomies and radiation for DCIS, I assumed I was going the extra mile by having both of my breasts fully amputated and not just removing the area that was affected. My breast surgeon was wonderful – I loved her. She made me feel like the mastectomy was the best course of action because of my BRCA status. Plus, we are led to believe DCIS isn’t a huge deal, and for most women, it really isn’t.

I’m not blaming my surgeon for this recurrence or new cancer or whatever they might want to call it. Of course I’m blaming myself (future post to come on all the other ways I am blaming myself). Why didn’t I get a second opinion? When my pathology came back after the surgery, the surgeon came in to the hospital room to tell me that there was a lot more DCIS than they originally thought. But I never asked her if I should pursue any additional treatment. Last year, when I began doing more research on DCIS and my own pathology, why didn’t I ask the PA who I saw in January, “Hey, my DCIS was the worst kind right? – Grade 3. Should I maybe have gotten some radiation? Can we schedule me some of that?” But I didn’t do that either. Even with all of my talk about self-advocacy, I assumed that these doctors would let me know if I needed additional treatment.

There is also very little protocol for prophylactic post-mastectomy follow-up; this is because BRCA+ women almost never develop breast cancer after a mastectomy (this review of literature is staggering – see “Efficacy of Prophylactic Mastectomy” section); it’s always been unclear to me whether doctors considered my surgery to be prophylactic or in response to cancer. While many women will have a palpating breast exam for five years following a prophylactic mastectomy, breast imaging is not recommended, even though we know it’s impossible that every breast cell – every cell containing a BRCA mutation – is removed during surgery. Yet, considering the bright white spot I saw on the mammogram picture on Wednesday, I have little doubt that imaging would have helped in my case.

So this time, I am absolutely getting a second opinion. When I received the call from my doctor’s nurse on Friday morning telling me the cancer is invasive, the first thing I did was call my husband. Then I texted my bff. I sat for a while and snuggled our dog. And then, I wrote to Dr. Susan Domchek, Director of the Basser Center for BRCA, the only medical center in the world dedicated to BRCA-related to cancers. I figured, if I’m going to try to get a second opinion, I may as well start at the top. Philadelphia is only a few hours from us – if I have to go there, it’s not a huge deal.

After telling her a bit about my case, I got to the heart of it:

A few years ago, my mother-in-law died from her third breast cancer – she was BRCA1 positive (as is my husband). I know what these gene mutations can do – I’ve seen it in too many of my family members – and I’m worried this second cancer will not be the last. I have an eight-year-old son; he was only 1.5 when I went through this the last time. I don’t want his childhood memories marred by my cancer.

I will get to my son in a different post, when I am able to even imagine thinking about him in this scenario.

Fewer than 24hrs later (on a Saturday!), I heard back from Dr. Domchek. She is willing to see me after the PET scan and MRI. She asked for my medical records, which I promptly put together into a Dropbox folder, and I sent her my upcoming schedule. This is really a huge relief for me. She is the premiere doctor in treating a cancer like this – I couldn’t ask for anyone more qualified.