Thyroid cancer plastered to trachea. Anyone?

@kmlnj
Boy, you have been through a lot! I feel for you!

How large was the cancerous growth when you were first diagnosed? What type of cancer was found?

Did you have multiple nodules in your left and right thyroid lobes plus growth of cancer cells outside of your thyroid gland connecting to your cricoid and trachea cartilage?

After radiation and chemotherapy treatments, did the 2cm cricoid mass reduce in size? What testing/imaging have they done since surgery and radiation/chemotherapy treatments?

Have you been stabilized on thyroid medication? I know it can take a while. I had my right lobe removed in 2022 and it took over 6 months to find the right medication dosage.

I have been through a lot! My husband died of ALS in 2023. I was his caregiver and didn't know I had cancer.
Anyway....
The cancer was all on the left side.
2 lymphnodes were removed.
Lots of neck dissection.
I won't know if the cricroid 2cm mass is frozen/stopped until my petscan in July.
I am on 137 Levothyroxine and I am doing well. One day a week I take 50.
My side/after effects are : tired and voice is raspy (cancer was close to voice box).
I am very grateful for the doctors and nurses and everyone who works in the cancer field.

I just had my thyroid removed 5 days ago. The large tumor on the right lobe biopsied positive (4,) for cancer before surgery and the smaller one on the left lobe (3.4) was a most-likely. The surgeon said that the right lobe was "sticky" which suggested a probable cancerous condition, but that was certainly not definitive. He would only know accurately after receiving the toxicology results from the actual removed thyroid. I have heard horror stories about thyroidectomy surgery such as voice box nerve damage and the loss of some or all of the parathyroid glands. I am so very thankful that my surgeons had the expertise to not cause any of that ancillary damage. Well, probably I have cancer, I'll find out for sure soon. I just wonder how much metastasis has occurred and the treatment (not looking forward to). Anyway, I'm counting my blessings and appreciating what hasn't gone wrong so far. I was diagnosed just 7 weeks ago, and already I am at this point. I'm kind of worrying because I'm getting things done in days where it has taken others months or years.

If they didn’t diagnose cancer right after surgery, maybe there is still a chance that it is negative….false positives of biopsy’s happen! The location of the thyroid is tricky for potential voice issues, so the positive side of not having any issues from the surgery is great news! As expected with any major surgery, the healing takes a little while, so just give yourself time. Hard candy and plenty of liquids will ease the soreness in your throat and help manage the mucus and do your neck exercises! I will remain hopeful that your news is good and follow-up will be easy. Take care!

Thank you, Your kind encouragement means a lot.

Thank you-I appreciate your kind words. My surgeon sent the initial pathology report generated during the operation to a group of "experts" for a further in depth opinion. I met with him the other day and he still did not want to comment at all until he had that final report and its sub classification. I was set up for RAI but my surgeon called my endocrinologist and cancelled not wanting to do anything until those results were taken into consideration. I have read the initial pathology report and to my layman's understanding it is not as promising as I would like. Its been 17 days since the surgery and I am kind of lost. Anyone one else have a similar experience?

It sounds like you are in very good hands with your surgeon. He/she seems to be taking all the necessary steps to provide you with information that is going to guide what comes next. The waiting is hard, I know, and it is easy to catastrophize. If you can, try to remind yourself of the things that have been good signs: e. g., voice and parathyroids preserved, no sign of lymph node involvement, and a surgeon who has taken the lead in getting more expert opinions. Remember, too, that you are only a few weeks out from surgery and you are adjusting to being on medication, which usually takes some time to get right. Feeling lost sounds normal. My word was destabilized. And in the absence of the additional expert opinions you are waiting for you can't yet restabilize. Do you remember the toy that was called weeble wobbles? You could knock them down but they always righted themselves. Are you able to eat and sleep? Those are foundational at times like this. You can speak to your doctor about medications that can help with those as well as anxiety and depression you might be feeling, all of which would be normal! Hang in there. I always tell myself to just keep putting one foot in front of the other. Feed the cats, get groceries, wash the dishes, pay the bills so that you can see you are managing your everyday life. It helps me!

I do appreciate you sharing your experience. I do try to carry on the normal daily activities, and thats a plus. I don't know if I am destabilized or re-stabilized or what ,but I am getting weary of all the trying to get information and what it means. After a while I feel like I'm only the patient, and as such just a lower part of the medical protocol, but maybe that thought is just my impatience. At this point I am going to live life as normally as possible, what other choice do we really have? Thanks for your encouragement.