u/sarahl1

Hi everyone, I’m a 28F who posted recently about being very anxious about my upcoming thyroid cancer surgery. Unfortunately, since then, additional lymph nodes on my left side came back positive for PTC, so my surgery has now expanded to a total thyroidectomy + central neck dissection + bilateral lateral neck dissections (previously total thyroidectomy + central neck dissection + right lateral neck dissection).

I just found out this past week, and my surgery is scheduled for next week. My surgeon also told me that because of how extensive the surgery is, she can't guarantee everything will be completed in one operation. She'll start on the side with more disease and may need to stage the surgery depending on how things go.

I'm honestly really scared and having a hard time coping with such a big change so close to my surgery date. This would also significantly impact my recovery time and ability to work around my medical residency schedule should multiple surgeries be required/if there are any complications.

For anyone who had bilateral lateral neck dissections, I'd really appreciate hearing about your experience. Was everything completed in one surgery? What was recovery like? Did you have lasting numbness, shoulder/neck problems, lymphedema, voice/calcium issues, etc.? And most importantly, how are you doing now months or years later?

I'd especially love to hear from people who recovered well too, since it's been hard to find many experiences online from people who've had surgery this extensive.

Thank you ❤️

Hi everyone. I'm 28F and was diagnosed with papillary thyroid cancer in April. I have two small biopsy-proven PTCs (~0.7 cm right and 1 cm left) and small biopsy-proven metastatic right lymph node involvement. I'm scheduled for a total thyroidectomy + central neck dissection + right lateral neck dissection at a major cancer center next month. I may potentially need RAI as well depending on surgery pathology. I'm also a resident physician, which has honestly made this harder in some ways. Intellectually, I understand why this surgery is recommended. Emotionally, though, I'm having an incredibly hard time accepting it.

One of the hardest things is how disproportionate the treatment feels compared with how little cancer is visible on imaging. I keep thinking, How can tumors this small mean losing my entire thyroid plus lymph nodes in my central and lateral neck? I know that's not how cancer treatment decisions work, but I'm grieving losing a functioning organ that I desperately wish I could keep.

My biggest fears afterward are not feeling like myself and having weight/metabolic changes. I have a history of an eating-disorder so this is psychologically significant for me. I know people will understandably say that with adequate levothyroxine replacement and appropriate thyroid levels, significant thyroid-related weight gain shouldn't occur. As a physician, I understand that reasoning. But I've also seen that the lived experience can be more nuanced than “normal labs = everything should feel the same,” and patients can have symptoms or body changes for many different reasons even when biochemically euthyroid.

I'm not looking to be told that weight gain is inevitable, because I know it isn't. I'd just appreciate hearing honest experiences: Did your weight/body composition, energy, or overall sense of feeling like yourself change? How long did it take to find the right levothyroxine dose? Did things eventually stabilize?

I'm also terrified of surgery itself. Knowing medicine means I know too much about rare complications, and I've gotten into a bad cycle of reading case reports and patient stories and thinking, Why couldn't that happen to me?

More than anything, I'm grieving my pre-cancer life. I'm watching other people my age move forward with careers, relationships, travel, etc., while my life feels consumed by cancer and fear about what comes next. I know PTC is highly treatable, but being told that doesn't necessarily make losing my thyroid or going through this operation feel small.

I'd especially love to hear from younger women who had a total thyroidectomy + central/lateral neck dissection. Were you this scared beforehand? Did you grieve losing your thyroid? Did life eventually stop revolving around thyroid cancer and start feeling normal again?

I'd also love practical recovery recommendations**.** What was actually useful to have at home after surgery—pillows, clothes, foods/drinks, things for throat/neck discomfort, sleeping, drain management, hospital items, etc.? What did you genuinely use, and what wasn't worth buying?

Thank you for reading. I think I mostly need to hear from people who understand how something everyone calls “very treatable” can still feel completely life-altering when it's happening to you.