1. < Thyroid Cancer
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Thyroid Cancer Group: Introduce yourself and connect with others

Posted by Colleen Young, Connect Director @colleenyoung, Dec 20, 2019

Welcome to the Thyroid Cancer group on Mayo Clinic Connect.
This is a welcoming, safe place where you can meet people living with thyroid cancer or caring for someone with thyroid cancer. Let’s learn from each other and share stories about living well with cancer, coping with the challenges and offering tips.
Feel free to browse the topics or start a new one.

Pull up a chair. Let’s start with introductions.

What type of thyroid cancer were you diagnosed with? What treatments have you had? How are you doing?

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

kknotek | @kknotek | Sep 21, 2021

I had a thyroidectomy May of 2011 at Mayo by Dr. Thompson. I have medullary thyroid cancer. I also had papillary in my tumor. I have had one tiny recurrence of disease. My endo at Mayo is Dr. Marius Stan and I love him. Any Medullary patients I encourage you to join the Facebook group Medullary Thyroid Cancer - MTC. Also read the books put together by MTC thyvers- After the Diagnosis and The Butterfly Sings.

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1 reply
kknotek | @kknotek | Sep 21, 2021
In reply to @lindameyerson "Hi I have medullary thyroid cancer diagnosed 10/19. I had a total thyroidectomy 12/19 .i am..." + (show)
@lindameyerson

Hi I have medullary thyroid cancer diagnosed 10/19. I had a total thyroidectomy 12/19 .i am currently on 100 mcg of levothyroxine and will be getting some scans and blood work in the upcoming weeks. I don’t know what to expect, how to feel and overall having great anxiety. It would be extremely helpful to chat with people with this disease

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Have you joined the Facebook group? I also have MTC and that groups is everything. The group is:
Medullary Thyroid Cancer -MTC

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botts | @botts | Sep 20, 2021
In reply to @botts "Hi Annebee, So nice to meet you… my dosage is at 200mg. I did not have..." + (show)
@botts

Hi Annebee,

So nice to meet you… my dosage is at 200mg.

I did not have any Cancer outside the one Thyroid Node and non in the Lymphatic System.

We have chosen to hold off in the Radioactive Iodine and “Wait and Watch”. Close monitoring will be by blood work and Ultra Sound. If there is any signs of Cancer Cells or activity I will do the RAI.

The one drawback to the RAI for me was the 20% to 30% possibility of drying up the Salivary Glands although my Endocrinologist said the likelihood of that happening was lessened when a low dose of Iodine is used…under 100.

Thank again and I look forward to staying in touch.

Bob

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Just thinking of you this Monday Morning and wondering how you are feeling!?

I trust there is improvement!?

Bob

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botts | @botts | Sep 14, 2021
In reply to @karmamamma "Thsnk you do much for your response! I am keeping positive snd I know movement is..." + (show)
@karmamamma

Thsnk you do much for your response! I am keeping positive snd I know movement is the key to longevity 🙏👍😎

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Thinking of you this morning!

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karmamamma | @karmamamma | Sep 14, 2021

Thsnk you do much for your response! I am keeping positive snd I know movement is the key to longevity 🙏👍😎

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1 reply
botts | @botts | Sep 13, 2021
In reply to @karmamamma "Hello group. Recently diagnosed with micro papillary thyroid cancer right lower lobe. Scheduled to have partial..." + (show)
@karmamamma

Hello group. Recently diagnosed with micro papillary thyroid cancer right lower lobe. Scheduled to have partial thyroidectomy next month in addition my parathyroid gland on the left side of my thyroid will also be removed. I have recently (7 months ago) had a liver transplant after liver cancer diagnosis . I am freaking out but I know that I have to conquer this just as I conquered my transplant. I am doing great on the liver transplant aspect and I am praying for a similar outcome after the PT. It helps me to read about others experiences so I can help mentally prepare myself for what is going to happen to me. Anybody out there have similar experiences and how are you feeling and coping now? How does the body function without any parathyroid glands? And how do all the medications make you feel. Thank you

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I have my Parathyroids so can’t respond to that but the Levotroixin at 200mg has my TSH where it needs to be…around 4.0.

I did have Open Heart Triple Bypass in January.

My Thyroid Surgery was May 17, 2021 and I am back to the gym 5 days a week, 2 hours a day, working out, and 2 miles in the treadmill. This has really aided in my recovery.

You will be in my prayers.

Bob

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botts | @botts | Sep 13, 2021

This may be a repeat…still finding my way around.

Bob, age 80 living in Virginia.

Papillary stage two Cancer in one nodule . Surgery with total Thyroidectomy. Wait snd Watch strategy with no RAI to be done immediately.

3.5 months and still sore throat and a little hard to swallow.

Levothroxine Med 200mg.

Had a triple heart bypass surgery January 27, 2021.
Back to the gym 2 hours a day, working out and treadmill fir 2 miles a day.
Would appreciate any thoughts.

Bob

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botts | @botts | Sep 13, 2021
In reply to @annebee "Hi Bob ! I am Annebee from Norway. I had my right thyoroid removed 18 may-21..." + (show)
@annebee

Hi Bob ! I am Annebee from Norway. I had my right thyoroid removed 18 may-21 and beacause of canser they removed my left in aug.18 -21.They found small traces of canser in the left too.Nothing in my lymps. I been very lucky and had no pain or sore.Started with 100 mg Levaxin and will have my first control 1 okt. then radioactiv iodine 10 nov.So i wonder why they wait with yous ? Hope you get better soon and i hope to hear what happens next.I know so little about the iodine treatment.

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Hi Annebee,

So nice to meet you… my dosage is at 200mg.

I did not have any Cancer outside the one Thyroid Node and non in the Lymphatic System.

We have chosen to hold off in the Radioactive Iodine and “Wait and Watch”. Close monitoring will be by blood work and Ultra Sound. If there is any signs of Cancer Cells or activity I will do the RAI.

The one drawback to the RAI for me was the 20% to 30% possibility of drying up the Salivary Glands although my Endocrinologist said the likelihood of that happening was lessened when a low dose of Iodine is used…under 100.

Thank again and I look forward to staying in touch.

Bob

REPLY
1 reply
botts | @botts | Sep 13, 2021
In reply to @amandajro "Hello @botts and welcome to Mayo Clinic Connect and this discussion. Members like @daroca and @maureenelizabeth..." + (show)
@amandajro

Hello @botts and welcome to Mayo Clinic Connect and this discussion.

Members like @daroca and @maureenelizabeth both were also diagnosed with Papillary Thyroid Cancer and are part of this discussion. I am hoping they may be able to help you with your question on soreness.

In the meantime, what is the dose of Levothroxine you are on?

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200

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karmamamma | @karmamamma | Sep 13, 2021

Hello group. Recently diagnosed with micro papillary thyroid cancer right lower lobe. Scheduled to have partial thyroidectomy next month in addition my parathyroid gland on the left side of my thyroid will also be removed. I have recently (7 months ago) had a liver transplant after liver cancer diagnosis . I am freaking out but I know that I have to conquer this just as I conquered my transplant. I am doing great on the liver transplant aspect and I am praying for a similar outcome after the PT. It helps me to read about others experiences so I can help mentally prepare myself for what is going to happen to me. Anybody out there have similar experiences and how are you feeling and coping now? How does the body function without any parathyroid glands? And how do all the medications make you feel. Thank you

REPLY
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