Newly diagnosed with Thyroid Cancer: What questions should I ask?

Posted by faith29 @faith29, Jan 5 9:16am

Hi,
I was just diagnosed with follicular neoplasm oncocytic cell type. I had been monitored yearly for the past 3 yrs for a left sided nodule with ultrasound and eventually biopsies Year one the nodule was 1.4cm, Year two 1.8 cm and was biopsied with indeterminate results. That sample was sent out for genetic testing and came back with abnormal cell structure 5-10% chance of change to hurthel cell ca yearly monitoring suggested. Year 3 ultrasound showed an increase in size to 2.4 cm and a subsequent biopsy showed the follicular neoplasm. I am scheduled to see a surgeon ( endocrinology) late next week. Any advice would be appreciated. What questions should I ask? Should I get a second opinion? What happens after surgery? Anything would be helpful, cause I’m just overwhelmed and afraid.
Thanking you in advance
Faith29

Interested in more discussions like this? Go to the Thyroid Cancer Support Group.

My biggest question to the surgeon is how many have they done in their career. I was advised it’s all about their experience and you want a surgeon that has done thousands of these. The other question is what is the actual procedure and the risk factors. What specifically is the surgery doing (Removal of tumor, thyroid, any lymph nodes, etc)? As far as post surgery from my experience it depends on the actual results of all of the biopsies they will do after tissue removal. I wish you good luck.

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Definitely go to surgeon who has experience with thyroid cancer. A lobectomy might be an option instead of complete removal… why remove the entire organ when you might be able to keep half and not need Synthroid. Try not to worry unnecessarily; 5-10% chance of HCC is pretty low. However, based on what I have read since I was diagnosed with having HCC, a surgeon with experience in it would be good. Good luck!

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I had my thyroid removed (along with lymph nodes) about 4 weeks ago. Surgery is never easy but providing that your overall health going into surgery is otherwise good, it shouldn't be feared. I have recovered quickly and am back to normal exercise and activity.

Also, keep in mind that the cure rate for thyroid cancer if properly treated is extremely high so providing that your surgery is successful, a positive outcome is likely. There are no good cancers but thyroid cancer is very treatable.

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Welcome @faith29, I hope you saw the helpful comments from fellow Thry-vors: @salish33 @koh and @skipeak. I'd also like to bring @nancirae and @jhornsby who have experience with follicular thyroid cancer in the discussion.

It's understandable that you're scared. Mayo Clinic offers these questions to think about asking your oncologist:
– What type of thyroid cancer do I have?
– What stage is my thyroid cancer?
– What treatments do you recommend?
– What are the benefits and risks of each treatment option?
– I have other health problems. How can I best manage them together?
– Will I be able to work and do my usual activities during thyroid cancer treatment?
– Should I seek a second opinion?
– Should I see a doctor who specializes in thyroid diseases?
– How quickly do I need to make a decision about thyroid cancer treatment? Can I take some time to consider my options?
– What might happen if I decide to have regular checkups but not have cancer treatment?
– Are there any brochures or other printed material that I can take with me? What websites do you recommend?
– Am I able to access my medical records through an online patient portal?

Might Mayo Clinic be an option for getting a second opinion?

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hi colleen, i had seen the surgeon and he said he would not do my surgery as he believes the cancer has reached my voice box. he said he was going to set me up with someone he went to internship and that said person has studied more on the thyroid issues and is also a professor at this hospital. i do have a question, which i will try and research on line, however, someone may be able to answer it for me on here. i had seen where they are doing lazer surgery on the vocal chords. this one lady claimed they were going to have that hole in her neck to speak and she didn't like that option and she traveled 300 miles to see this lazer dr. she is doing fine. thanks for listening.

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@skipeak

My biggest question to the surgeon is how many have they done in their career. I was advised it’s all about their experience and you want a surgeon that has done thousands of these. The other question is what is the actual procedure and the risk factors. What specifically is the surgery doing (Removal of tumor, thyroid, any lymph nodes, etc)? As far as post surgery from my experience it depends on the actual results of all of the biopsies they will do after tissue removal. I wish you good luck.

Jump to this post

Thank you so much for your input. I appreciate the advice.

Be well,
Faith

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@koh

Definitely go to surgeon who has experience with thyroid cancer. A lobectomy might be an option instead of complete removal… why remove the entire organ when you might be able to keep half and not need Synthroid. Try not to worry unnecessarily; 5-10% chance of HCC is pretty low. However, based on what I have read since I was diagnosed with having HCC, a surgeon with experience in it would be good. Good luck!

Jump to this post

I would like to thank you for taking the time to respond to my questions. It was much appreciated.

Be well,
Faith

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@salish33

I had my thyroid removed (along with lymph nodes) about 4 weeks ago. Surgery is never easy but providing that your overall health going into surgery is otherwise good, it shouldn't be feared. I have recovered quickly and am back to normal exercise and activity.

Also, keep in mind that the cure rate for thyroid cancer if properly treated is extremely high so providing that your surgery is successful, a positive outcome is likely. There are no good cancers but thyroid cancer is very treatable.

Jump to this post

Hi,
I’m glad your surgery and recovery went well and that your able to resume your normal activities in 4 weeks. I go to a aquatic boot camp class 3x’s a week and it’s my stress reliever and I was hoping I wouldn’t have to miss many classes. Thank you so much for your info it is much appreciated.
Be well,
Faith

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@colleenyoung

Welcome @faith29, I hope you saw the helpful comments from fellow Thry-vors: @salish33 @koh and @skipeak. I'd also like to bring @nancirae and @jhornsby who have experience with follicular thyroid cancer in the discussion.

It's understandable that you're scared. Mayo Clinic offers these questions to think about asking your oncologist:
– What type of thyroid cancer do I have?
– What stage is my thyroid cancer?
– What treatments do you recommend?
– What are the benefits and risks of each treatment option?
– I have other health problems. How can I best manage them together?
– Will I be able to work and do my usual activities during thyroid cancer treatment?
– Should I seek a second opinion?
– Should I see a doctor who specializes in thyroid diseases?
– How quickly do I need to make a decision about thyroid cancer treatment? Can I take some time to consider my options?
– What might happen if I decide to have regular checkups but not have cancer treatment?
– Are there any brochures or other printed material that I can take with me? What websites do you recommend?
– Am I able to access my medical records through an online patient portal?

Might Mayo Clinic be an option for getting a second opinion?

Jump to this post

Hi Colleen,
Thank you for the list of questions. I wouldn’t have thought of half of them. I meet with the surgeon in a couple of days and then I have a second opinion with another surgeon the following week. I live in Massachusetts but if need arises. I would not rule out traveling to the Mayo. I appreciate the response and great questions.
Be well,
Faith

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