Thyroid Cancer Group: Introduce yourself and connect with others

How definite are they that you have cancer? I had been told that thyroid cancer cannot be diagnosed until surgery. FNA have false positives. When I went to find out if I could be a candidate for Radio Frequency Ablation (RFA) they did an FNA and sent it for Affirma testing, which has the highest probability for predicting cancer. Mine came back with a 50% change for Hurthle Cell Carcinoma (HCC) so I was not a candidate for RFA. You might want to look into a second opinion with a surgeon who does RFA to see if it is an option. Since I had a very large nodule that was crushing the other structures in the area and causing pain I had to have surgery….I was also very worried about the laryngeal nerve and speaking and only wanted a lobectomy. The surgeon had said that might have to change to a total thyroidectomy if it looks more invasive when they do the surgery. Unfortunately, HCC was confirmed. I had hoped I would not have to take Synthroid but it appears that I need it. Finding the correct dose and correct medicine has been tricky!! The side effects have been very hard, however I think things are improving. I started with many trials of medicine and the doses were too high; I am now on a very low dose 25 mcg 5x a week and some of the more challenging side effects have improved. IF YOU NEED SURGERY, a total thyroidectomy will guarantee that you will need to take medication. If you have a partial lobectomy, you might need to take medicine, however you might not need medication….the other half might work well enough for your needs. I don’t think they can predict which one you will be.
Some advice if you have surgery: take pictures of you neck every day so you can see changes, use the silicon scar cover because it really does help the scar to heal and blend into your neckline, keep a chart about symptoms; and if you go on medication ask to start low and work up and keep a log about your side effects. Some of the side effects are subtle and can be unrelated, however the medicine can influence it (I had extreme leg cramps on Tirosint and thought I was having a stroke! The leg cramps stopped when the medicine was stopped….whew!) A lot of people take Synthroid and never have an issue. Unfortunately, I have always had issues with side effects from medications so this continues and has been challenging. Definitely read the side effects of the medications!! My thyroid test numbers have always remained in the normal range, however I was having side effects of hypothyroidism so I had to take medicine. It’s important to monitor blood tests numbers AND how you feel.
A lot of people end up taking thyroid medicine and it is easily adjusted and feel great, so not to worry if you need it, but you should be aware in case you find yourself in the group having difficulty getting on the right dose.
Good luck!

Hugo
My thyroid cancer was found on scans done for esophageal cancer and kidney cancer which have been resolved now. The last surgery I had was to remove my left thyroid following byopsy which indicated it was cancerous. I had no symtoms and no pain before or after. Latest scan showed cancer was gone and lymph nodes were normal. My lasted blood work showed that I do not need to take any additional medication so I'm happy. I'd be happy to try and answer any questions you may have.
Don

Hi--

FNA just confirmed papillary carcinoma in a single TR5 1.5 cm nodule on R side. Meeting with local endocrinologist and cancer surgeon tomorrow. Among my questions: Lobectomy or full thyroidectomy? (Assume one will be recommended, not any other course, but am interested if 'something else' might work.) Randomly discovered of course with a CT scan. To a degree, I am my voice, so I'm concerned re vocal chord damage with any surgery. God knows how long (or not long) the carinoma has been there (a week, a month, five years?) nor whether it's spread elsewhere (should I request something to determine whether it's spread to nodules or other places before making any surgical decisions?)

I sorta get that the default seems to be 'you're gonna be fine' (which is fine!), but all things considered, I'd just as soon avoid unneeded hormone replacement, voice loss, etc to extent I can. This is all fresh within a week and I feel perfectly great (given my age, etc) so am adjusting. Also--if moving forward, use the local docs (who probably deal with this half a dozen times each year) or go where the services are performed more frequently? Thanks for any input!

Hugo

@cherylharder2001, I'm sorry to hear that you have to go back for more surgery. You may wish to connect with others who have been there in these related discussions:
- Occult Papillary Thyroid Cancer with Lateral II Lymph Node Metastasis
https://connect.mayoclinic.org/discussion/occult-papillary-thyroid-cancer-with-lateral-ii-lymph-node-metathesis/
- Modified radical neck dissection: What's your experience? https://connect.mayoclinic.org/discussion/modified-radical-neck-dissection/

- After diagnosis of Hurthle Cell; anyone with cancer in lymph nodes?
https://connect.mayoclinic.org/discussion/after-diagnosis-of-hurthle-cell-anyone-with-cancer-in-lymph-nodes/

Hi Steve,
I just saw your post. I am hoping that you have had the surgery and that it was successful. I just received a phone call from the dr who did my thyroid biopsy and two of the nodules have turned cancerous. I was in shock when I received that call! As of now, I have a “virtual appointment” on Wed with a thyroid surgeon. Like you, I am also feeling scared. I am 74 but I have always been in good health. There are the two nodules on the right side that have changed and there is a tiny nodule on the left side, so I will have to see what the surgeon recommends. I hope that you are doing well now and that everything came out okay with your surgery. MaryAnn from Boston

I have been just diagnosed with the same thing, Jenny. I will have a virtual visit with a surgeon on Wednesday. I hope that you are now doing well and that all of that cancer is now gone. The best thing for you to do is to be with a good Endocrinologist. Wishing you all the best in your recovery.

I just received a phone call from the dr who did my biopsy that two of the nodules on one side have become cancerous. There is a tiny nodule on the other side that was too small to be biopsied. I have one of those “virtual visits” with the thyroid surgeon on Wednesday. The biopsy dr told me that he will give me options on half the thyroid or the entire thyroid to be removed. I am hoping for you that all went well with your surgery and understand your concerns as a singer! Hopefully, the surgery is now behind you and you are doing well.

I hope that you are doing well.

I have also been diagnosed with papillary thyroid cancer and will meet with the surgeon virtually on Wednesday. I have had three nodules for six or seven years……they have always stayed benign. Always kept up with the ultrasounds every two years. Now, they have turned cancerous. I am 74 years old and basically in good health. This is all so new to me! I am so sorry that yours has spread to the lymph nodes. I will keep you in my prayers. I just saw that your post was in 2021, so I hope that you are now doing well. MaryAnn from Boston

@cmhw, by stretching the esophagus, I think it may also be referred to as esophageal dilation. You might be interested in these related discussions and blog:
- Esophageal Self Dilation
https://connect.mayoclinic.org/discussion/esophageal-self-dilation/
- Esophageal Self Dilation Therapy: An Effective Alternative
https://connect.mayoclinic.org/blog/gastroenterology-and-gi-surgery/newsfeed-post/esophageal-self-dilation-therapy-an-effective-alternative/
Are you doing self dilation? How is it going?