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I-131 Scan Asymmetric Uptake and No PET/CT?!!!

Synthroid Cytomel
Posts: 10
Joined: Jan 2011

I had mixed follicular/papillary thyroid cancer. Total thyroidectomy in 1988, with I-131 ablation in 1989. In 1990, the cancer came back and I had another I-131 ablation. I had clean scans until October 2010 when an I-131 scan showed "asymmetric radioiodine accumulation in the right submandibular region, which may represent physiologic uptake within the right submandibular salivary gland." My thyroglobulin was less than 20, but there is no specific number. Should I have had a PET/CT to rule out cancer in the salivary gland? If not, why not? Is there something other than cancer that can cause an uptake?

Since the thyroid scan, I am being treated for endometrial cancer and I am thinking it would be noce to have PET/CT to find out if the cancer has spread more than what they could tell during surgery (stage 3). If the PET/CT showed additional spread, I would want chemo followed by external radiation, rather than only the external radiation that has been recommended.

Do I now a have a valid reason to have whole body PET/CT?

Thank you, in advance.

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

What have your docs concluded from that latest scan in October? Do they believe you have active thyroid cancer/thyroid cells within the salivary gland area? Are they proposing additional I-131 ablation? If I understand correctly, you had uptake of the I-131 which usually seems to suggest that the docs would first try I-131 ablation to see if the cells can be killed that way. If an ablation dose is not in the cards are they suggesting external beam radiation for that area of your salivary gland - or is the ex beam you mention for the treatment of the endometrial cancer?

Mayo ordered a PET/CT for me before I had external beam radiation for my thyroid cancer. I was glad they did as I was curious about spread as well. Turns out I did have nodules outside the neck. PET/CTs expose you to a fair amount of radiation and are expensive to boot so they seem to order them sparingly. Have you asked your oncologist(s) about having one? I'd definitely bring it up with them to learn the thought process on that one. Wish I could help more.
Best to you.

Synthroid Cytomel
Posts: 10
Joined: Jan 2011

My endocrinologist wanted me to have PET/CT. Nuc med refused. The external radiation was recommended for my endometrial cancer. I'm concerned both about recurrent thyroid cancer and additional metastastic endometrial cancer that wasn't found during hysterectomy and surgical staging (like maybe in the colon or?)...

Thanks.

alapah's picture
alapah
Posts: 256
Joined: Oct 2009

Wow, that is interesting. Did the nuc med folks tell you why they didn't want you to have a PET/CT? Is it largely an issue of cumulative exposure? I had my first PET/CT done prior to six weeks of EBR and I ended up having another since then (about a year later). I am not saying all of that radiation is for the good, but sometimes the benefits outweigh the drawbacks - and that is how the docs make the determination as to what tests and treatments to order for a given patient. Do your endo and nuc med folks talk to each other? I know in many cases docs aren't necessarily collaborating, especially if they are in different hospitals or practices. I don't know how common it is to order a PET prior to chemo or EBR...

hopeful girl 1
Posts: 454
Joined: May 2010

I just finished treatment for uterine cancer in November 2010, and now have thyroid nodules, so I am being sent to a thyroid surgeon for evaluation. I had a thyroid ultrasound which shows a couple of the nodules are predominantly solid. I will probably need a scan and fine needle biopsy. So I am in the wait and see area right now.....
My appointment with the thyroid surgeon is end of January-I am trying to get this appointment bumped up.

For the uterine cancer I had surgery and 6 chemos and 25 radiations.
I had a pet scan prior to my uterine surgery, which scanned from the knees to the neck.

I have not had any further pet scans to date. Perhaps they will order one in January for me.

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