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No DX, just looking for answers....please

Posts: 5
Joined: Jul 2012

I had papillary thyroid cancer follicular variant in 2010, thyroidectomy in 10/10, RAI in 11/10. I've alway had a parotid gland on the left side that has been screwy since the RAI, but it's in my cheek. Ever since my survey 19 months ago, I'm still getting bouts of hoarseness, breaking out in hives, (I carry benedryl spray in my purse), and constantly feel like a pill or food is still stuck in my throat. My endo says call my family doc, my family doc says check with the endo, and so it goes. A few days ago I noticed a tenderness in my neck, under my ear, near my jaw bone....yep a little hard enlargement! I have not been sick or had any infections at all....other than a severe itch on my neck under the swollen lymph area. I called the endo to question this and suddenly they want to see me first thing Monday morning and are questioning if I have all of my lymph nodes from my thyroidectomy etc, and if I've been scanned since my surgery. Is this really a cause for me to fret? Do lymph nodes normally get swollen and hard and long kinda ropey feeling under the skin??

allmost60's picture
Posts: 3184
Joined: Jul 2010

Hi Tcurry,
I do not know about the "long kind of ropey feeling" with the lymph nodes, but the swollen nodes I had were hard feeling. I had one large node on my groin that was swollen and hard and another smaller node on the side of neck (size of a dime) that was also hard. I couldn't feel the swollen nodes /tumors in my stomach, but would assume they were bulky and hard also. During my one month of "watch and wait" I also had a swollen node appear almost overnight on my jaw bone...hard and tender to the touch, about the size of a pea. As soon as the jaw node appeared, my Onc decided it was time to stop the watch and wait and start chemo. By the way...I never had any sickness or infection during the time periods when all of my swollen nodes appear. No weight loss, chills, etc. Actually...I was healthy as could be. My diagnosis after removal of inguinal groin lump came back as Follicular NHL-stage3(no bone marrow involvement)grade2-typeA(non symptomatic).I'm glad you will seeing the Endo doc on Monday, as it's always better to be safe than sorry when dealing with swollen nodes. Let us know what you find out...my prayers and positive thoughts are with you. Best wishes...Sue

Posts: 5
Joined: Jul 2012

The "ropey" description is because when I feel of my lymph node area that is so tender, it actually feels like a small string of pearls, like 2-3 small peas stacked one atop of the others, versus just one large solid mass. Does this make any sense at all?? I feel fine, for the most part, thyroid issues always seem like I'm tired, I always seem to have bouts of insomnia, and the itching just about drives me insane....those crazy deep blue bruises that appear out of nowhere don't help either, I guess maybe I'm scratching too hard?? Thanks again for your support

cathyp's picture
Posts: 365
Joined: Dec 2009

Hi Tcurry,

Two years after I had radiation treatment on my head, neck and chest area for Hodgkins Lymphoma, I had the same small string of pearls that you described. The biopsy came back negative. I think our radiated lymph nodes may react differently after our treatments.

Because my thyroid was in the radiation field, I had to do 6 month interval testing for Thyroid function, TSH, Free T3 and T4. Eventually my thyroid started to fail so I take synthroid now.

Was your entire thyroid removed? Are you taking medication? Do you go for scheduled blood testing? Perhaps the doseage needs to be adjusted if you are taking armour or synthroid. I'm wondering this because you describe being tired mixed with bouts of insomnia. This was a symptom for me when my dose needed to be adjusted.

Not sure what to offer regarding the localized itching.

I hope all of your symptoms can be resolved with easy benign findings. For me, I faithfully saw/see my family doctor, radiation oncologist and long term followup specialist to stay on top of things. My first bout with Hodgkins was 23 years ago. (I don't go for scans that involve radiation because I have so much damage from the original treatments.)
Best of Luck when you see your doctor. Keep us posted!

Posts: 5
Joined: Jul 2012

I take Cytomel for thyroid replacement, and all of my labs are great, last labs for TSH were 8 weeks ago or so, everything was great! Only thing out of range was my folate was elevated ( I dont take folate or a vitamin). I had my entire removed, and no lymph nodes were taken or tested at that time. My surgery and RAI, oncologist at that time etc were all in daytona beach Florida, we have since moved to Kentucky after a death in our family. So I don't have the same team of physicians unfortunately

forme's picture
Posts: 1162
Joined: Aug 2010

Hi Tcurry

Welcome to the group. Hopefully you will not have a new cancer, but it does happen.

I have had thyroid cancer and two recurrances with mets. Also dx with lymphoma. So it is possible to have that happen. I would think that it's not likely, but please do get it checked out. I am surprised that when your entire thyroid gland was removed, they did not take any lymph nodes to check for spread. A lot of what you describe sounds fairly normal after having the surgery and RAI. The RAI has long lasting effects, some can be permenent.

Lymph nodes in the neck look just like a string of pearls. Yours may just still be reacting to all you have been through. I am glad that your new Doc wants to see you. I also had itching when dx with the lymphoma. It was mostly on my legs and tummy srea.

Always smart to follow up with your Doc if you are having any concerns.
Best to you and let us know how your doing.

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