Thyroid Cancer Group: Introduce yourself and connect with others

Hi Don - I started this group in May. I'm two weeks post lobectomy. I was in the exact same position as you. How did everything go for you? Did you have a full thyroidectomy? How are you 7 months later?

Hi - I am two weeks post lobectomy and am re-reading all these wonderful posts. What did you decide - half or whole? I was in the same situation and it was a very difficult decision for me to make. I decided on a thyroidectomy since it was the only side that came back with 70% chance of cancer. It did come back capillary cancer but contained. No need for surgery on the other side.
I hope all is well for you!

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.

Hi Steve
I'm scheduled to have thyroid surgery on February 22 at Moffitt in Tampa FL. My byopsy came back 80% positive for cancer so I'm having it removed. I can't feel it and have no symptoms. I'm hoping for 1 day surgery and that will be it.
I'll be happy to try and answer any questions you have.
Don

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

Can you tell me more about the silicone scar cover??
Thanks,
Sandy

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!

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!