Anyone else had thyroid tissue regrowth after a total thyroidectomy?

So confusing and scary! I only have my own experience to share. Hopefully someone else has more info. I would say to keep doing research, and get another opinion depending on where you are and what you find.

Thank you for your response. I’m not sure what to push for now as they’ve said based on biopsy’s and extensive scans they’re sure it’s benign and they think the lump is just the parathyroid gland implanted into the side of the neck along with some thyroid tissue.. I have an appointment with an endocrine surgeon soon and not overly sure what to expect. I have a feeling they’ll say to just monitor the situation as they said removal would have its own implications after initially saying that whatever it was couldn’t stay due to where it was growing.

I shared this in a previous post, but briefly, I had a similar situation where 20 years after a total thyroidectomy I found a lump in my neck. Several biopsies came back inconclusive, and my surgeon was sure it was benign. But after surgery they found solid Hurthle Cell cancer, which can't be detected until the mass is removed.

Hi all, not sure if this thread is active but just wanted to join to share my experience. In 2011 I had a total thyroidectomy. Late last year I noticed a lump on the right side of my neck and went for ultrasounds and got referred to ENT. After 7 months I was seen and sent for more ultrasounds and biopsys as they were concerned the findings on the 2nd ultrasound might be sinister due to growth. It all moved quite quickly, I ended up going for a MRI under contrast and after many meetings it was confirmed the lumps discovered were benign (thankfully!) and that going off my surgical notes it's looking like it's the parathyroid gland growing that's been implated into the right sternomastoid in 2011 along with thyroid tissue regrowing in the same area at the side of the neck as well as tissue growing back where the thyroid used to be. I've been referred from my ENT consultant to another hospital and have an appointment next week with a general surgeon/endocrine surgeon at their Endocrine clinic. Not really sure what to expect as haven't been told why this has been done just that I'm being sent for him to review the case.. Will this need to be removed? Or will they just monitor it?

I had a large malignant hurthel cell (6.5 Cm) removed as well as my entire thyroid and over 16 lymph nodes back in October 22 with RAI treatment in December. I was told the RAI is really to try and kill any remaining thyroid tissue that may be left. I was told they don’t have a lot of success killing hurthel cell with RAI but they like to try. I am guessing that is why it’s so important to get checkups and scans every 6 months. Is the same info your doctor told you?

Well this thread is disturbing. Have anyone with thyroid cancer had radioactive iodine treatment? I recently had a total Thyroidectomy to remove a 7+ cm malignant tumor that was identified as a variant of follicular carcinoma called oncocytic or Hurthle cell carcinoma. None of my clinicians have said anything about the thyroid growing back. They only said there is residual thyroid tissue where the parathyroid attaches but that the radioactive treatment would basically kill any cancer left. After which a total body scan would indicate if it had spread beyond the thyroid. Now you’re talking about a thyroid regrowing? Yikes…

I just had to answer even though I've posted before. To sum up, I had thyroid malignancy with Hurthle cell tumors in 1996 and had total removal surgery. No problem with surgery or recovery. Then 2017 it returned, again successful surgery and recovery. The dr. said sometimes pieces are left and regrow. I was never told first surgeries malignant. My suggestion is that you hold the doctors feet to the fire and get all info, records and reports. I did not. I'm in late 80s, on Synthroid and doing well but I'm disappointed with myself for not finding out details from first case and disgusted with doctors. Today's medical situation is a lot more complicated. Just remember it is YOUR body, dont be accepting like I was.

Wow

Unfortunately I believe I will be in this category. I had a total thyroidectomy in 2015. Follicular. Intern disaster. Severed my recurrent laryngeal nerve and destroyed the para thyroids to boot. Another story. Anyway I have a sizable lump I just noticed yesterday on my left clavicle area by my throat..,,,, sigh…….. went to my primary today and quickly did the Ponchas Pilate routine- deferring me to an oncologist who is on vaycay next week. Here we go again down this oh too familiar rabbit hole, Alice. Another big sigh. My appt is for Aug 22 so I’m sure it will be diagnosed then. I knew it before and I know it now. Just not sure what I am willing to go through this time. Much more jaded. Medical mafia. Health care is BROKEN. Crap

Sorry, regrowth thyroid patients post thyroidectomy. It was ultrasound, not CT scan, that revealed regrowth of so-far normal thyroid tissue after total thyroidectomy. The original diagnosis of papillary carcinoma of thyroid came in late July of 1972, when a surgical resident felt abnormal lymph nodes below the original tumor site that had been diagnosed " benign tumor of the salivary glands". The 2nd biopsy was diagnosed papillary carcinoma of the thyroid which at that time required a total thyroidectomy.