Just Diagnosed With Papillary Thyroid Cancer

Posted by mabfp3 @mabfp3, May 5, 2024

I have had three benign nodules on my thyroid for six or seven years. In 2021, one had grown and it was biopsied. It was still benign. Two months ago, I had a routine ultrasound for these nodules and two of them had grown, so I had another biopsy in April. I just had a call from the doctor who did the biopsy to tell me that two of the nodules are cancerous. Those two are on one side of my thyroid and there is a tiny one on the other side, which is too small to biopsy. She referred me to a surgeon who she highly recommends and said that he will present some options to me as to whether to have half of the thyroid out or the entire thyroid. After that, I will have to take thyroid medicine for the rest of my life. I have to admit that I was blown away when I received that call! I was told by the biopsy doctor that this is 100% curable, but I am concerned and nervous about the whole situation. I am 74 years old and other than a knee replacement, I am in good health. I would love to hear from others who may have gone through a surgery like this. All input and suggestions are very much appreciated! MaryAnn from Boston.

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Profile picture for Margaret Gowan Mester @margaretgowanmester

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.

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

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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.

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Profile picture for EZwriter @ezwriter

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.

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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

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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!

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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.

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Profile picture for celia16 @celia16

Sending warm well wishes your way. I haven’t had thyroid cancer, but have hypothyroidism and have taken medication to treat it for over 15 years without a problem.

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Thanks so much!

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Profile picture for Don Higgins, Volunteer Mentor @dsh33782

Mary Ann
Hi I also was diagnosed with cancer in thyroid and had it removed. So far my numbers have not required me to go on any medication for it. I hope that may also be true in your case. I'd be happy to answer any questions you may have.
Don

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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!

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Hi Lynne Marie,

Thank you *so much* for that information! I had no clue how that worked! I truly appreciate all of your input and advice to me! Thank you again!

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Profile picture for mabfp3 @mabfp3

Thank you *so much*, Lynne Marie! Your post is the first one that I have received and I truly appreciate your experience and insight with this diagnosis! My doctors are with Mass General Hospital and Brigham and Women’s Hospital in Boston. I will do the virtual visit on Wednesday at 4:30 with this surgeon who was recommended to me by the dr who did the biopsy. I would prefer an in person appointment, but if there is nothing available, I will go with the virtual visit. I was told that this will be day surgery, under general anesthesia. Thank you so much for the tip on frozen yogurt!!! I have heard of that pill that they give for radiation and you cannot be near anyone. My husband and I live in the house so maybe he will have to go somewhere else or I will!!! Thank you for the suggestion of starting a written list of questions! I will definitely do that! Thank you so much for your prayers. That is the best gift that someone can give me!

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Hugs! He can stay in home, just not with you in same room. At least after I left hospital that is how it was.

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Mary Ann
Hi I also was diagnosed with cancer in thyroid and had it removed. So far my numbers have not required me to go on any medication for it. I hope that may also be true in your case. I'd be happy to answer any questions you may have.
Don

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