Papillary Thyroid Carcinoma plus more?

Posted by w3 @w3bjamn, Jul 19 5:53pm

Hello, I recently wrote about my situation but thought I'd rewrite and give update.

The start of my journey has been - met with my ENT to discuss tonsil removal, which turned into CT of lymph nodes. My CT showed 1 large lymph nodes and 2 incredibly large lymph nodes. Also showed prominent right axillary nodes. Then told to do a biopsy of 2nd biggest (easiest) to get to cervical lymph node. (Had tonsil removal at same time, do not recommend!)
Started to have short of breath, even just sitting. With stabbing pain above my clavicle bone.

I was told via phone I had "Lymph node with metastatic papillary thyroid carcinoma" - and that they would like to do a full thyroidectomy following a RAI treatment. That's it. I then had to was almost 3 weeks for more information, which has been torture.

Today- My ENT would like to send me to a different Dr for the surgery of 50-60 cervical lymph nodes, due to his scheduling. Then see an Endocrinologist.

He mentioned going to primary Dr when I mentioned shortness of breath. Most concerning, when I mentioned the partially visualized prominent right axillary lymph nodes, he had to look it up again and was 100% stumped.
Am I concerned? Heck yes!
Has anyone heard anything remotely like this? I'm hoping to get into a better specialist...
Thanks - Ash

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

fossfactor | @fossfactor | Jul 21 10:58am

In reply to @catherinec "Call Mayo!! They are a wonderful resource. I wanted a second opinion and just filled out..." + (show)

@catherinec

Call Mayo!! They are a wonderful resource. I wanted a second opinion and just filled out the form they have on their website. They called me back the next day. Even though the Jacksonville, FL location is almost 3 hours from my home, I was more than willing to travel to get their expertise. Unfortunately, they currently don't accept my insurance, but I was thrilled to have the opportunity to speak with a referral coordinator there. She gave me recommendations for 3 other cancer specialty clinics/hospitals within driving distance of my home and told me to just give them each a call. I ended up scheduling an appointment with Moffitt in Tampa, FL. They were able to get me in right away. Incredibly, when the nurse at Moffitt learned I lived 3 hours from that location as well, she suggested I do my initial consultation with the endocrinologist by video!! She said I could always come down for an in-person exam, testing, etc., right after that if it was indicated. The process could not have gone smoother. The physician was amazing and spent lots of time with me. She ended up telling me essentially the same things my endocrinologist had told me, she was just much nicer about it and explained it in a way that made practical sense. I am going to go down there to have them do an ultrasound to be on the safe side, but I plan on continuing to treat with my local endocrinologist now that I have confirmation we seem to be on the right track. As far as medical records go, they coordinate everything related to that on your behalf. You just let them know every medical provider you have seen thus far and any testing or procedures that have been completed and they do the rest. It's the standard procedure. Finally, I was a bit worried about the possibility of offending my current endocrinologist by getting a second opinion, as I didn't want to alienate her if I ended up wanting to continuing seeing her after all. Wasn't a problem in the slightest. She seemed to feel complimented that Moffitt had supported her treatment plan. And if Moffitt had not, I wouldn't have continued seeing my endocrinologist anyway. It was a "win/win" all the way around. Once again, hope this helps. Cathy

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I had a total ankle replacement during Covid 2020. Should have gotten a second opinion. My doctor screwed up the surgery and had to have it fixed 3 years later after a lot of pain.

computernerd2b | @computernerd2b | Jul 22 4:07am

Ash, you know your own body. I also have Papillary Thryoid cancer and underwent a modified radical bilateral neck dissection with thyroidectomy. I had breathing and coughing fits pre surgery and I’m still improving on items post surgery due to the extensive removal of cancer completed. I’d highly recommend a new ENT if youra appears unsure. A scope and an ultrasound can help see if your trachea is constricted.

fossfactor | @fossfactor | Jul 22 8:03pm

Don’t use an ENT. Get an oncologist.

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