Angioinvasive Follicular Carcinoma AND Papillary Thyroid Carcinoma while breastfeeding a 7 week old
Really going through it right now. When I was 16 weeks pregnant, I went in for a physical with my primary care doctor, and she found a lump in my thyroid. I had an ultrasound, FNA, and genetic testing done throughout my pregnancy, and I was referred to a surgeon for a 2.8 cm Bethesda IV follicular neoplasm with a 1% chance of malignancy.
I wasn’t even going to get the surgery, but after talking with the surgeon, we decided to do a partial lobectomy just to get it over with. I wasn’t that concerned, but I didn’t want to just monitor it forever and have to get it taken out eventually. We also had already met our insurance deductible and out-of-pocket max for the year because of the pregnancy.
So I gave birth and scheduled my surgery for 7 weeks postpartum. A few days later, I got a call from my surgeon that it was actually an angioinvasive follicular carcinoma, and I needed the rest of my thyroid removed along with RAI. I was also breastfeeding a 7-week-old. He asked me to come back within the week for a total thyroidectomy. Shocked is an understatement. So we got the surgery done, and my parathyroids decided to go offline, and I was admitted after the procedure.
This has just been so much. I’m being told I have to stop breastfeeding, my thyroid hormones are all over the place, and breastfeeding may be making my calcium issues worse due to parathyroid dysfunction.
At my follow-up for my second surgery today, they found that I also had a 10 mm papillary carcinoma in the remaining tissue on the right side that was removed during the first surgery.
I’m working with endocrinology, and they said I may be able to breastfeed for 3 more months and then get RAI, but my surgeon is saying I need RAI as soon as possible. I also saw that if breast tissue is active, there may be an increased risk of breast cancer later in life.
I’m looking for similar stories and outcomes. Thank you for reading and for this community 🩷