Possible third neck dissection: Very scared

Hi,

I have tall cell also. I had a hemithyroidectomy at the end of 2017. When they found out that it was tall cell I had the rest of my thyroid removed in early 2018. I am currently going to have a left lateral neck dissection for malignant lymph nodes. On my CT scan they found several micro nodules. I am very, very scared. I don’t have advice, but you are not alone. How are you doing?

Hi @jenjenmn and maryny23, I can understand being scared about the possibility of having to have yet another surgery. I'm tagging @tcsurvivor4 so that they see this discussion as they have had 3 successful thyroid surgeries and can share their experiences. @lilyann @koh @sweettoothd @mcmaya also have thyroid cancer with tall cell features.

Jen, Mary, has it been determined that you will have surgery? Do you have a date?

hi jenjenmn, i am surprised for i thought once you had the thyroid removed, that was it. then the more i read, the more i learn, that is not all that simple. words like tall cell and aggressive papillary cancer. next thing you know. i end up with exactly that as i had the radical neck dissection on the right side in january 31, 2023. 11 of 19 lymph nodes malignant. then i had the left side done and that had a small amt. of cancer. then i had the RAI, then the scans and then the cat scan. i have a thyroglobin of 48, which came down from 127, and that was july 11, 2023 bl. test. so now i find out from the ENT, that my epiglottis is not closing properly, so i have to go and do a barium swallow. i've lost my voice and do a lot of grunting and gurgling and burping and coughing. seems like i need a suction out my throat. i do not know how in the world i am going to drink that barium as i have such a gag problem, plus i have to sip any liquids. takes me forever to eat some food. i wish you the best all of you, sure hate to hear of you having to go in for the third time. i'm sure i am a lot older than you, prayers for all.

Hi,

I had my neck dissection last week. I turned out they found malignant nodes in the central compartment as well so they removed the lymph nodes from there as well. I had pain behind my ear on that side so I just instinctively felt the other side (my right side) yesterday and found a hard lump just at my jaw line. I am going to the dr next week and am already mentally preparing myself for them to say that they are going back in. It feels never ending.

Sorry you are going through all of this. I just had a central and lateral neck dissection and now my vocal cord is paralyzed. Not nearly as frustrating as your complications sound. I wish you the best in your recovery.

I did have the third neck dissection at Mayo on 6/22/23. By the grace of God and Dr. Moore’s skillful hands, the surgery went well and I had no post op complications except for swelling and edema in my face and neck that has since subsided (for the most part). Reading his notes about the surgery he said “this dissection was substantially more difficult than usual due to extensive scar tissue…”. He did not rule out another surgery if one was necessary but that would have to be the last resort. Each recurrence the treatment options get fewer and more difficult with more greater possible complications. That scares me. I am trying to focus on the positives and am truely grateful I can still talk and sing!

hi jenjenmn, so glad to hear all is well as can be. i do hope no more surgeries, sounds like a great surgeon. i am so glad to hear that you can still sing and talk. what a blessing. keep us informed.

Hi Jenjenmn,

I was wondering how you are doing. We both had our neck dissection around the same time. I have papillary (tall cell/Brafv600e) and micronodules in my lungs. It seems like we’re in the same boat! I hope all is well.

Hi @jenjenmn, I would also like to check in and see how the dissection went. @maryny23 recently joined the group and has a similar diagnosis.

Jen, how are you doing?

you sound similar to me tall cell with braf mutation, had RAI in May, just went for check up, They think i have malignant lymph nodes- will do a biopsy neck month and go from there, very scared too. I guess this never ends, but at least we have the in between times to enjoy life. I feel bad and guilty about my husband also. I know this affects him a lot. Best to you!!