Just Diagnosed With Papillary Thyroid Cancer

I agree! Something I wish I had known……that cancer hospitals can be complacent and that second opinions should be routinely scheduled. I had no idea that there were other tests and blood tests that could have been considered as part of the monitoring ( they just used my annual physical bloodwork from my regular doctor).

I was extremely reluctant for surgery due to the indeterminant findings, statements about how it did not feel like cancer; and the proximity of the laryngeal nerve during surgery. I read about a lot of cases which left people with voice issues and I was afraid it could have been career ending if surgery resulted in extreme voice issues. Follow up issues are still answered with statements about it” not being cancer,” however I am too familiar with statements like that not being accurate. I am a better advocate for myself now. I keep asking my questions so if any regrowth of cancer occurs, we catch it early.

Valid points, @margaretgowanmester. How are you doing today, living with thryoid cancer? What do you wish you had known?

I agree with the others….get a second opinion! Why remove an organ with the chance it’s a false positive? As far as fitting into the doctors time schedule? Don’t do it. Thyroid cancer is usually considered a very slow growing cancer so you have to time to get second opinions (from a doctor you choose so they are not just rubber stamping the findings for a friend. I would wonder why the doctor wants you to have the surgery so fast…..seems like he is rushing you along so you don’t have time to consider options. Good luck!

Obliged, thank you. I have a few weeks to get that 2d opinion.

Some people (clinicians and non-clinicians) have that mentality for various reasons: Take it all and no one will ever know if that was "overkill" (pardon the phrase). A clinician certainly wouldn't want you to be disappointed and have to go through this again. But if you only had a tumor in your right lung, would you want both lungs removed? Also, 6 years ago, I asked a LOT of Q. I was told that radioactive iodine is no longer the typical treatment. It was MANY years ago (decades?), but it wasn't 6 years ago. Again, these were my experiences. No matter where one goes for healthcare, a second opinion about the treatment plan could be helpful. And you have the right to say no to a total thyroidectomy. This position is called conservative treatment, do only what's necessary. If things change on the other half of my T, then I'd have that removed. It's a common surgery, very close to the surface of the skin.

My surgeon of course is a cancer killer: Remove entire thyroid, and follow up with the radioactive iodine rinse, take meds as per the endocrinologist and thank me later. (Which may be the route.)

The endocrinologist isn't scared of a lobectomy nor, I think, am I. [Situation: Papillary rt lobe carcinoma in a 1.5 cm nodule.]

Need to decide in next few days, and surgeon has a clear point of view not admitting others. Prob need second opinion for greater certainty.

Hugo

In my opinion, it might be good to consider having a second opinion with another FNA with AFFIRMA testing. Based on what I read, Affirma testing has the highest accuracy rate for predicting cancer. If surgery is required, I tend to think it is better to remove the problem area and not just go in and remove an entire organ unless necessary….some cancers do not have that option but that is not always known until surgeon sees the issue during surgery. A lobectomy might enable you to avoid having to take medication; and if medication is needed, might only require a small dose. Getting regulated on thyroid medicine can be difficult and it is very hard to tell which side effects are related to the thyroid, the specific medication and its associated side effects, or the dosage. It is also important to watch Vitamin D level so you don’t end up with osteoporosis and associated issues from that.
By the way, I would also be concerned that your doctor referring you to a surgeon “who will present options” and only included statements about partial and total thyroidectomy…..there is another option and that is to monitor it to see the rate that it is growing….no surgery yet! FNAs can have false positives and you don’t want to rush into surgery unless there is significant level of confidence that there is cancer…..maybe you can have them monitored with regular ultrasounds and blood work to see how fast they are growing. Good luck!

Exact same situation here. I refused to have the entire thyroid removed. Even as a "half," the gland does still work!! I had half removed 6 years ago. At first, a Fellow MD told me that I could choose whether to start hormone replacement therapy (the meds) right after surgery or later. But right after surgery, I was told I should start therapy. I work in a medical research field; I knew that the half-T could produce hormones. In fact, the same Fellow MD told me that it MAY "step up" and increase its production after the body realizes that the hormone levels had dropped (after surgery). So I said I wanted to wait to see what the body did with the lower hormone levels. I think we waited a month or 6 weeks or so, then I had a blood draw. My little half-T did it!!! Hormone levels were normal! NO THYROID MEDS FOR ME AT ALL, EVER. The staff Endocrine MD (the Fellow's boss) told me he'd never had someone choose to wait and see what the half-T would do. This was a learning for him. He now would tell other patients they could retest the hormones in a few weeks before starting meds. This was my experience. It's good to know we have a choice to delay the meds a bit.

Thanks so much!

Hi Don,
Thanks so much! I may have some questions after I speak with the surgeon on Wednesday. It’s always good to talk to people who have been through it. Thanks for reaching out!