Thyroid Cancer Group: Introduce yourself and connect with others

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

Hi @steve42.
Hearing the word cancer is always concerning. The only advice I would offer would be to take things slowly and don’t rush right in thinking you have to have surgery right away. False positives can occur and you certainly don’t want to remove half, or all, of your thyroid based on one test.

If you are being directed to a surgeon for removal, you MIGHT want to consider geting a second opinion. One biopsy identifying cancer could be a false positive….are you having symptoms of an issue? When you had your FNA was it sent for AFFIRMA testing? From what I understand, this testing has the highest rate of accuracy for predicting cancer. If you did not have Affirma testing, maybe a second opinion could include another FNA that is sent for Affirma testing. Although no one wants to have an extra FNA, if it can give you a better idea about the odds of the accuracy of the information confirming cancer, it might be worth it.

Do you have a large nodule? There is a procedure called Radiofrequency Ablation (RFA) that might be an option to shrink the nodule. You would need to have a second opinion by a doctor who specializes in this procedure to know if you might be able to be considered for it.

It’s hard not to panic when you hear cancer but try not to rush into decisions. Research your options and ask questions. It was my understanding that thyroid cancer could not be diagnosed until surgery, so I tend to think it is best to try and rule out false positives before having surgery.

Good luck!

Hi Everyone, my name is Steve and today my Dr called me and told me that I have papillary thyroid carcinoma today. I'm 40 years old and kind of feeling scared. Glad to see this forum is out there with everyones stories of recovery. I didn't really get much info, they biopsied my right side earlier this week and now this. So I'm just waiting for another dr to call me about my next apt and see where we go from there.

Thank You

Live!
I was dx with a rare aggressive thyroid cancer more then 3o years ago , and when it spread the following year I was told my time was limited.
I'm still here and living a valuable and p r educative life. Yes I've had periods over the last years of health challenges but I raised my children and am now enjoying grandchildren!
Kepp it all in perspective. Don't worry too much. .make s point to do things you enjoy with people you b enjoy and live life each moment. Be present in your moments.
Take notes on your questions for your appointments, have someone go with you , to help remember key points of the appointment , or even take notes for you. Wishing you the best!!

Hi ! So glad your surgery went well and your recovery is going better now.
Be sure to write down your questions as they come up, so you have them with you for your appt. You'll be surprised how easy it is to forget something in a appointment like that. Take time for lots of rest as you recover. Prayers for a quick recovery

Hi My name is Jenny I was diagnoised with Papillary Thyroid Carcinoma in December 2023, On Jan2 2024 I had Thyroidectomy with 5 Lymph mode Neck dissection. 3 of the 5 Lymph nodes tested positive for the same Cancer. I have been recovery spent 3 days in the hospital because Calcium levels were low and been home since. Been doing good next step is Endocrinlologist.

Although hearing you have cancer can bring your mind to the worst case scenario, it is important to know that Thyroid cancer is usually contained to the thyroid and very treatable. Also, it is very important to state that FNA is not always accurate for predicting cancer…. False positives can cause a lot of unnecessary stress!
Did you get diagnosed post surgery? If so, they should be able to tell you if the cancer was contained in the thyroid or if it was also outside the thyroid. The treatment seems to vary greatly!!
If you have not had surgery yet, maybe you can ask for Affirma testing on your FNA because it has a high accuracy rate for PREDICTING cancer. Since I am not an advocate of removing organs “just in case it’s cancer,” I think going with the best predictor would be worth it. If you have a large goiter and the Affirma testing shows a low level of concern for cancer, you might qualify for Radio Frequency Ablation (RFA) where they shrink the nodule instead of taking out the thyroid gland.
It is important to mention, removing the thyroid gland will result in the need to take medicines that are not always easy to get regulated on (I am having difficulty with this), so in my opinion, surgery is the last option unless definitely necessary..
If you already had surgery…I read that Papillary cancer has the best odds of being self contained and people make a full recovery. If you need to take Synthroid, definitely keep a symptom list with your dosage….it is very easy to think the symptoms are from other causes but collectively they are usually associated with too high or too low of a dose of medication.
Good luck!

Hi everyone I have been diagnosed with Papillary Thyroid Carcinoma, and am very scared. What should I expect, dying or living? to be or not to be

It’s hard not to worry but “ don’t worry.” 😆
Definitely get a second opinion! Before you have surgery it’s always good to get a second opinion to try and rule out false positives. I was told that they can’t definitively diagnose cancer until they actually do the surgery, so a second opinion might help rule out a false positive.
There is also Affirma testing ( they send the material from the fine needle biopsy for Affirma testing) which has a high rate of accuracy for identifying probability of cancer, which might be a good option.
It is scary to hear you might have cancer but of all the cancers, this one is usually a very slow growing one so you don’t have to rush to make a decision and can get a second opinion.
I have found that the online group is helpful for information, so you don’t feel alone to make decisions.
Good luck!