In October of 2011, I had finally wrapped my head around the idea of being BRCA 1+, and that I needed to do something about it. Obviously I was not interested in seeing another oncologist, so I started doing what I do best: research. After a few hours I had a good plan. I scheduled an appointment with a genetic counselor, and then another appointment with a breast specialist, and finally an appointment for a mammogram.
The genetic counselor was not especially helpful to me, since I already knew I was BRCA 1+ and I knew where it came from genealogically. But if you're considering getting tested, I highly recommend going through a genetic counselor. I wish I had gone that route initially, because I think my experience would have been much better.
My appointment with the breast specialist was okay. He was friendly and nice and when I cried in his office he gave me a tissue and his nurse gave me a hug. They were so helpful and wonderful to me. They were the first people throughout this journey that had been truly understanding and for that I am eternally grateful to them. The doctor even called to schedule my MRI with me sitting there crying because he wanted to help me. I don't know why I was crying, by the way. I think everything just caught up to me and I broke down. I try to be brave and strong for everyone else's benefit but sometimes it just gets to be too much. It happens a lot. I'm emotional :)
Next was the mammogram. I'm very lucky to live in Baltimore, where we have tons of amazing hospitals. And I know Johns Hopkins is known for being innovative and they're a top hospital in the country. BUT, I am not a fan. I went to one of their radiology centers for my mammogram. I've been having mammograms since I was 25, as recommended by my mother's oncologist. I always have resistance from the staff, and lots of questions regarding my age and why I need a mammogram. I'm used to it. But this experience was the worst by far. After the annoying onslaught of questions I've grown accustomed to, they sent me back to the little dressing room thing and made me put on a gown. I sat there for half an hour. Finally someone came and told me that she was so very sorry, but my appointment would have to be rescheduled because the doctor had left early and they needed him on site to perform the mammogram because of my age. What?! I had never heard that information before, and I had taken the day off work (I work from home) and found a babysitter and everything. It was extremely inconvenient, and I was livid. Needless to say, I will not be going there again. I also never did get that mammogram, but it's okay because I had a breast MRI instead.
That was an experience, for sure. Nothing like laying inside a tube with your boobs tucked into these holes while you lay on your belly with your arms above your head for half an hour. Not something I'm looking forward to doing annually, but it has to be done. At least it came back clear so I could breathe again! Its very stressful to sit around waiting for those results to see if there's any kind of a mass or abnormal cell growth.
So that was my first round of doctors and tests. My breast specialist came up with a plan that I would have imaging (either mammogram or MRI) every 18 months. I initially agreed to this, but after I thought about it for a few days I decided that it didn't seem vigilant enough. Everything I've read recommends screenings at least every 6 months. This doctor, although fabulous and caring, had the idea that I was jumping the gun by asking about a prophylactic bilateral mastectomy (which I will explain more about later). He also told me that he felt my mother developing breast cancer at a young age had no bearing on my future. While I know there are two different medical opinions on this, I tend to like to err on the side of caution. So I sought a second opinion, which I will chronicle in the next post, since this one is getting pretty long :)
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