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RAI after total thyroidectomy, and postpartum
Hi everyone. I’m recently postpartum and while pregnant I was diagnosed with papillary thyroid cancer. I underwent a total thyroidectomy with right neck dissection a month after delivery. My ENT said I’d need RAI since 20 lymph nodes were involved. I met with endocrinologist. And had a lengthy conversation about breastfeeding and RAI, they told me I’d have to stop breast feeding at least 2 weeks prior to taking the therapy. I questioned this and was not given any concrete answer of when I needed to stop exactly. I did the low iodine diet, and was off my thyroid meds, I went for the RAI. When I went for my scans the morning of the RAI the nuclear medicine doctor told me I should be not breast feeding for 6-8 weeks or I’m at an increased risk of developing breast cancer because my breast ducts can intake the RAI. My endocrinologist said it’s not her job to give those instructions but only give instructions on isolation after RAI and instruct on the low iodine diet… does this sound right? I’m in shock that this happened. I don’t know what to do. It took so much planning to get a place for me to start away from my family, have my family come out and help with my baby and husband, the diet, being off my meds… should I get a new endocrinologist??
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@k80814
I’m so sorry to hear you are dealing with all of this after delivering your baby!!
I would not make any changes in endocrinologist at this time. I would follow treatment plan for thyroid medication and RAI and stop breastfeeding at this point. Endocrinologists may be limited in their knowledge/training on RAI in pregnancy/postpartum and with breastfeeding. They can continue to monitor bloodwork and thyroid hormone levels plus other hormones and make sure you get regular ultrasounds of your neck despite having your thyroid removed. You can get thyroid cells regrowing in your neck after full thyroidectomy. My sister had a full thyroidectomy at 27 when they found cancer and Inhad a lobectomy in my 50s due to a suspicious large nodule (I now an hypothyroid and have Hashimoto’s thyroiditis confirmed).
You may want to talk to your OBGYN and consult a breast health expert about RAI and breastfeeding risks post treatment. Your baby may need to stay on formula and your breastmilk will stop if not regularly breastfeeding/pumping. The RAI may be too risky for you and your baby to breastfeed. Don’t put too much pressure on yourself because all of this is a lot to deal with after delivering a baby and having thyroidectomy/RAI. Take care of you and your baby as best you can with the help of your friends and family.
@k80814
Another thought is to talk to your baby’s pediatrician about RAI/breastfeeding post treatment and safety for babies. They may have knowledge/research about the risks of RAI on breastfeeding and impact on breastmilk/babies’ health.