When I was 13 years old, my mother died of metastatic breast cancer. She was 40 and had been initially diagnosed at 33. Not that I knew that at the time. That was the late 1970s/early 1980s and in those days, people hardly even used the word "cancer" except in an occasional whisper. They certainly didn't use the word "breast" and even more certainly didn't tell children about it. So, it wasn't until a few months before she died that my mom and dad leveled with me. I had sort of figured it out, knowing she had a large scar on her breast and had frequent doctor's appointments. I learned later that she initially didn't have chemo, and when she did later on, she didn't lose her hair, so it wasn't hard to keep the secret. I figured it was something she had had in the past, and it was behind us. Looking back, I'm sure she hoped the same.
Anyway, when I was 19, it occured to me that my risk might be higher and I should do a breast self exam. This was in the early 90s when shower cards were beginning to proliferate, even on my college campus. Lo and behold, I found a lump. I had surgery a few months later and learned all about fibroadenomas. They are very common in younger women and completely benign. But thus started my surveillance as a "high risk" person.
Over the years, I had several more fibroadenomas, one of which also turned up atypical lobular hyperplasia. My breast surgeon recommended mammograms at 27 (5 years before my mother's diagnosis). After I had my children, I decided it was time for genetic testing. Turned out, I was BRCA negative! Phew! If I had been positive, I had already decided that I would have a prophylactic mastectomy and (if BRCA1+) oopherectomy. Even though I was negative, I still had a family history and atypical hyperplasia, so still considered high risk. The oncologist suggested I take tamoxifen and get high risk screenings, which meant alternating mammograms with breast MRIs, every 6 months, in addition to clinical breast exams.
For the first time, the cloud lifted. I was BRCA negative, but still being proactive in taking a proven breast cancer prevention medication. Maybe breast cancer wouldn't be my fate after all. The anxiety around the screening abated and I saw them as routine medical appointments, just like my semi-annual dental visit.
Just 18 months later, a day after a "routine" MRI, I got a call that there was a new finding that needed to be seen on ultrasound and biopsied. When I went for the appointment at the end of the week, the radiologist first had me get a 3D mammogram. No sign of the mass. He found it fairly easily on ultrasound, however, and he said he strongly suspected it was a small cancer. (You know your doctor is concerned when he hugs you on your way out, but I'll write about my medical team in another post.)
The following Monday he called me and confirmed it. Infiltrating and in-situ lobular carcinoma. ER/PR 100%, HER2 negative. All the docs seemed happy with that.
I learned since that lobular cancers make up only 10% of all breast cancers (the other 90% are ductal). They are typically slow growing, but very hard to see on mammograms, so most people with lobular cancers have much larger or more advanced cancers by the time they are discovered.
Since that day, it's been a flurry of phone calls, appointments, emails, etc. I had a bilateral mastectomy and now have tissue expanders in place in a multi-step reconstruction process. All of that will be covered in future posts. This one is long enough and extraneous enough.
No comments:
Post a Comment