Symptoms post 2 years post TT and RAI

• By cabro
• Reply 3754523
• January 30, 2013 at 1:21 am
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I did not feel any changes and I had spread to the lymph nodes at 5 months post-TT. I had felt awful for over a year due to Hashimoto's, which was the reason for my TT, but it continued until RAI killed off all my remaining thyroid tissue and cancer. But very few people report these symptoms. My new nodes were found about 6 weeks after a hospital ultrasound found nothing. I have chalked it up to better detection - both in equipment and technician. It was RAI avid, too, which was good. My best guess since you are a year post-TT is that it is still a salivary (parotid) issue. They can keep cropping back up. Let us know what the endo says. Mine is very good with palpating the jaw, the neck, the throat and the clavicles for clues about what may or may not be going on.

• By cabro
• Reply 3754525
• January 30, 2013 at 1:23 am
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Sorry. you are 2 years post-TT. My left parotid is still swollen and I occasionally have pains on both sides. My opinion is that the left parotid suffered damage. I'm 2 years post-RAI, too.

• By Justgeo1
• Reply 3757135
• January 30, 2013 at 6:06 pm
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I didn't have any symptoms until AFTER my second RAI and then I had pain and swelling in my lymph nodes that required surgery... had a radical neck dissection and have still got salivary gland swelling and tear duct issues... but no problems with lymph nodes... if I have any left in my neck...

• By Assert
• Reply 3757883
• January 30, 2013 at 9:46 pm
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Thanks for the reality check. It's terrible. I'm typically an assertive person, but I tried to see my endo about three months ago when I realized I had no scripts for labs or further testing. I had never been without a plan for follow up at least every three months. I didn't even know when my next appt should be. Well, she immediately came out to the reception area and told me I am fine and to get my copay back and go home. I reminded her I had no scripts/orders and so she gave me one for labs and one for us/node mapping (both in April). She wouldn't even let me wait in the exam room. She just kept saying "you're fine, you're fine". I've never experienced anything like that with a doctor. I'm put off a bit, but worse than that afraid she won't take me seriously. She is most respected endo in this area and my PCP totally missed my nodule when it was visible, so she doesn't inspire confidence. I guess I'll ride this out a little longer. Thanks for your input, everyone.

• By cabro
• Reply 3758568
• January 31, 2013 at 6:25 am
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Wow, that's distressing to get blown off like that with no long-term (or short-term, for that matter) plan in place and no scripts, either. I have just shown up at my endo's when they dropped the ball. In my case it was a screw-up with my RAI, so it HAD to be fixed ASAP. One year later, they screwed up my WBS, too, and I had to go in (on my own initiative) to get it fixed. I haven't seen that nurse there in over 10 months, so hopefully that part of the problem has been solved. I'm glad you have a plan now.

• By LisaMB
• Reply 3762874
• February 1, 2013 at 10:25 am
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Your situation is similar to mine. When I explained the pain I was having in my neck and ears, etc. She just told me I wasn't having it. I am 2 years post TT and RAI and have suspicious nodes as well. I had a salivary gland flare up just last week and I took a different approach. Rather than going to my endo, I rather made an appointment with the ENT who did my TT. He was very accommodating, examined my neck and checked my salivary glands and looked in my ears and confirmed that, yes, I do have enlarged salivary glands. He even wants me to come back after my tracer dose of 131 for my WBS month. Perhaps, making an appointment with the surgeon who did your TT would be helpful. Hope you get the answers you need.

• By figgy1aol
• Reply 3762883
• February 1, 2013 at 10:27 am
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I have similar experiences feeling pain/discomfort actually behind the left ear and down the left side of my neck post TT and RAI (diagnosed 5/11; TT surgery 6/11; RAI 9/11). I have had a number of checkups with my radiation oncologist and my whole body scans continue to come back showing no metastases and Tg tests come back within normal range. I have also seen my endo twice since surgery and treatment.

Follow-ups with your doctors is very important BUT I find that seeing my PCP (primary care physician) has been the best for me as she listens to everything I have to say and sometimes, worries more than I do! I kind of consider her my 'go between' and I have all test results and scan reports sent to her so I have another sound opinion when I feel like my mind is running away with me.

As far as the pain on the left side of my neck -- I do sometimes think it has to do with my sleeping position or my pillow. Some days it's very prominent; other days, it's hardly noticeable. I had a massage therapist tell me it was a tightness and binding of my muscles in that area (maybe stress related). I know that after a massage in that area, it feels a lot better.

figgy1aol

• By Assert
• Reply 3767269
• February 2, 2013 at 4:34 pm
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Thanks for everyone's help. I think most of us share similar experience and questions - am I noticing what I need to, am I living life without undue concern, am I assertive enough in my healthcare. No one wants to wait too long if there's a chance if a recurrence, and don't want to lose credibility with healthcare providers. What begat what? Stress? Inflammation? Sleeping funny? Strain from working out? I've decided to clear my head for now as long as it doesn't get worse. I've got the ultrasound in two months with labs. As always, thanks for your support!

• By figgy1aol
• Reply 3767397
• February 2, 2013 at 5:19 pm
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:))

• By Sam11
• Reply 3779546
• February 6, 2013 at 12:09 pm
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I just read this whole thread after a search for "symptoms of lymph node spread" on the site. I had TT in Dec 2012, and no RAI (FVPTC/2cm/partially encapsulated/age 47/female). This week I have been feeling swelling and pain on the left side of my neck all the way down to the collar bone. Of course I think it is a muscle, and of course it probably is. But the US of my neck done by the endo before diagnosis and before TT, was so quick. And when I went for 6 week follow up, he did not repeat the US, said no need to do so. Then bloodwork came back: TSH 0.04 (so he has changed levo from 125 to 112) and Tg 3.3. I sometimes feel like the doctors are just throwing me into a game of Playing the Odds: "Odds are you are fine, so we are not going to waste health care dollars double-checking. Ya, you might be in the small percentage that we miss, but them's the breaks." No one says this; I just feel it. I want to be sure the cancer is cleared and not somewhere else.

• By Assert
• Reply 3780964
• February 6, 2013 at 8:06 pm
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Sam 11- well said!