Follicular thyroid cancer found: Searching for advice from others

Posted by jhornsby @jhornsby, Jan 7 11:30am

I am new to this site and searching for advice.
In April 2020, I received a total removal of thyroid.
The rest of 2020, was monitoring and supressing thyroid hormones with 2 RAI treatments and whole body scans that showed successful treatment. However, my Tg never really dropped below 1.
In 2021, I continued with monitoring of medication 150 levothyroxin and had sonagrams, PET Scan, and 2 bioposies of suspicious nodes in neck. All came back – no cancer. My Tg kept rising.
In 2022, my Tg was 30 so CT scans were done on my neck and chest. Chest clear but suspicious nodes in nect were found. Bioposies again were done with no cancer.
In November, my Tg increased to 68 (6 mo. after previous CT scans). New CT showed no change to neck nodes but 5 micro nodules were found in my left lung.
Now it is 2023, I am a bit scare of all that I have read with metastasis thyroid cancer to the lungs. It appears that only 1-4% have it spread to lungs or bones. I am under the care of Emory Winship Cancer Institute – Atlanta. My case is going before a cancer board on Jan. 20 to discuss treatment. I want to fight this. I am 54 years old and have so much to live for!

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

Hi,
Wow, very scary not knowing! It sounds like your doctors are good with followup testing. Not to add more stress however have they also checked your brain? From what I have read it can go to the brain…. My doctor said there is a 1% chance but it might be something to check. When I had PET scan they said “it checks from eyes to thighs,” so brain is not included.
I hope the Cancer Board comes up with some suggestions for you!
Good luck!

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@jhornsby, you've got a good fellow traveller in @koh. I hope you saw their reply to you.

I know it sounds scary to hear that your case is going before the Cancer Board, but this is a very good thing and is commonly done. It allows all members of the cancer team to come together to discuss you and your cancer. Just think of it as all the best minds focused on giving you the best advice and, if necessary, treatment for the best outcomes.

For now, I might suggest focusing on all the things, people and experience you want to live for. 🙂 Be kind to yourself. And when your mind starts whirring around with worry, just come back here. Write down your concerns, your questions and let them go.

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@koh

Hi,
Wow, very scary not knowing! It sounds like your doctors are good with followup testing. Not to add more stress however have they also checked your brain? From what I have read it can go to the brain…. My doctor said there is a 1% chance but it might be something to check. When I had PET scan they said “it checks from eyes to thighs,” so brain is not included.
I hope the Cancer Board comes up with some suggestions for you!
Good luck!

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Thanks for your empathy and suggestions. I have added "check brain with CT or PET scan" to my long list of questions.

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@colleenyoung

@jhornsby, you've got a good fellow traveller in @koh. I hope you saw their reply to you.

I know it sounds scary to hear that your case is going before the Cancer Board, but this is a very good thing and is commonly done. It allows all members of the cancer team to come together to discuss you and your cancer. Just think of it as all the best minds focused on giving you the best advice and, if necessary, treatment for the best outcomes.

For now, I might suggest focusing on all the things, people and experience you want to live for. 🙂 Be kind to yourself. And when your mind starts whirring around with worry, just come back here. Write down your concerns, your questions and let them go.

Jump to this post

Thank you for your encouragement and helpful suggestions. I am trying to focus on the people in my life and self care.
My mind goes to …is MET thyroid cancer beatable? I just want the bottom line and then aggressively move forward to reach goals. I travel a lot with my husband and our non profit and I hate that our ministry which vitalizes me may be put on hold. I do not like to sit on the sidelines. I am frustrated on how cancer is going to change our lives, routines, freedom, etc…
Again, thank you for this outlet to share.

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hi everyone, i am doing alot of coughing at night and during the day. thing is, the dr. believes that the cancer has also reached my vocal chords. i know the compression is at work. on all these thyroid sites, i haven't read of anyone having the "coughing" . thank you for listening. blessings to all.

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@lilyann

hi everyone, i am doing alot of coughing at night and during the day. thing is, the dr. believes that the cancer has also reached my vocal chords. i know the compression is at work. on all these thyroid sites, i haven't read of anyone having the "coughing" . thank you for listening. blessings to all.

Jump to this post

Hi Lilyann,
I also had coughing as part of my thyroid cancer symptoms and my cancer had also reached my vocal cords. After surgery I was left with one paralyzed cord. Unfortunately the radiation therapy resulted in a lot of mucous which also caused coughing. The radiation therapy was successful in getting rid of all residual cancer except for one lymph node so it was well worth the coughing.
Good luck in your journey!

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@lilyann

hi everyone, i am doing alot of coughing at night and during the day. thing is, the dr. believes that the cancer has also reached my vocal chords. i know the compression is at work. on all these thyroid sites, i haven't read of anyone having the "coughing" . thank you for listening. blessings to all.

Jump to this post

Hi Liilann,
I had/ have coughing issues….have you looked into reflux? I have a history of GERD (prior to the partial thyroidectomy) and after the surgery it was much worse….I think the acid was now able to travel further up in my throat now that the BIG nodule was removed. I took medicine for the GERD and it really helped the coughing. When my stomach acts up, my GI has recommended Gaviscon….especially before bed and raising the head of the bed so gravity works against the acid. reflux can often cause coughing and going to bed after eating can increase the issue.
My endocrinologist told me that people often have problems with GERD after having thyroid removal….IDK if that is for people who already have a GERD issues or people in general. Good luck!

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Follicular Cancer Found in April 2020 UPDATE…
Met with my Endo this week to go over the results of the Cancer Board Discussion regarding the CT Scans of my neck and lungs.
Moving forward- a PET Scan is scheduled in 2 weeks followed by a neck biopsy with Tg wash of lymph nodes (The third biopsy to be done in 3 years). If cancer is found, surgery will be done to remove lymph nodes.
A third round of Radiation Iodine Ablation is on the table.
A CT Scan of chest will be repeated in 3 months to look at the 5 micronodules.
Chemo Treatment is not being considered until all of the above results point to it being needed as the last resort.
Another issue is that in 2020 when I was diagnosed with follicular thyroid cancer my sugar and A1C were normal but "pre-diabetes." Now my sugar and A1C are extremely high (A1C – 8.3). The doctor immediately wanted to put me on metformin, My sugar has been as high as 280 and is staying in the 200s. I requested the doctor to wait 3 months so that I can aggressively cut out sugar and carbs and revisit this in 3 months. It has only been 24 hours, but I am now checking my blood sugar in the morning (fasting) and before dinner. I have read some articles that prolonged taking of levothyroxine (150 g) may cause an increase of sugar levels which causes more health issues. I know I must take levothyroxine b/c I do not have a thyroid, but I feel that more and more health issues are showing up which means more medication. Another issue includes bone density issues and my overall mental and emotional state (worry, fear, and anxiety) due to all of this.
I appreciate any knowledge and wisdom from those who are also walking this road.
Jody

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