Thyroid Cancer Group: Introduce yourself and connect with others

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.

I’m Colleen, and I’m the moderator of this group, and Community Director of Connect. Chances are you’ll to be greeted by fellow members and volunteer patient Mentors, when you post to this group. Learn more about Moderators and Volunteer Mentors on Connect.

We look forward to welcoming you and introducing you to other members. 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?

Liked by Dee

@remi @suzieq10279bellsouthnet @mariagiusi @jessicamiranda @littlemsmalibu1 @dizzyb @cbayala @baz10 @blulilbaby @cancerbegone @lbhoffman I'm please to let you know about the new group on Connect dedicated to thyroid cancer:
– Thyroid Cancer https://connect.mayoclinic.org/group/thyroid-cancer/

Be sure to click the link above and +Follow the group. Why not start by introducing yourself? Share your story: When were you diagnosed with cancer? What treatments have you had? How are you doing?

Liked by Dee

REPLY

I was diagnosed with Follicator cell and Hurdle cell
Had biopsy's, positive. Had to put this on back burner due to a different type of cancer in breast.
Finally had thyroid surgery in November. It was a colossal mistake. So surgical outcome was awful and I have not selected a follow up treatment.

Liked by Dee

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@nobody

I was diagnosed with Follicator cell and Hurdle cell
Had biopsy's, positive. Had to put this on back burner due to a different type of cancer in breast.
Finally had thyroid surgery in November. It was a colossal mistake. So surgical outcome was awful and I have not selected a follow up treatment.

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Hi, @nobody – sounds as though the November thyroid surgery you had did not have the outcome you were looking for. Will you share more about how that went and where things are at currently for you?

Liked by Dee

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Hello, I’m Jesse a 49 year old male that was diagnosed with poorly differentiated thyroid cancer which also decided to venture to my lungs as well. I had my thyroid removed in August, followed up with iodine treatment and began clinical study BLU-667 in October. I’ve had two scan which have shown a reduction in size of the spots in my lungs and clear marks in neck.
I’m still trying to get used to not having a thyroid and taking oral chemo everyday. I have my ups and downs but everyday is another opportunity for me to rebuild, Grateful for the clinical study and my care team! Go BLU!!!!

Liked by Dee, Lisa Lucier

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Hello-my name is Bob and I have malignant neoplasms of the thyroid papillary.
I have gone thru 2 rounds of surgery and iodine. Now I’m starting round 3.
I have elevated markers and I get a biopsy the day after Christmas.

Liked by Dee

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I had follicular and papillary cancer of the thyroid 20 years ago. I had a double entry done by Dr DE Joyner at Loyola hospital. I had radiation as a child and when I was in my 20''s they notified me that I was a risk for thyroid cancer. I watch it till my 60''s when I then got it. Had thyroid completely removed. I now have 3 meningiomas brain tumors.I had surgery for one. The others we are watching. They feel these tumors are related to the radiation.

Liked by Dee

REPLY
@nobody

I was diagnosed with Follicator cell and Hurdle cell
Had biopsy's, positive. Had to put this on back burner due to a different type of cancer in breast.
Finally had thyroid surgery in November. It was a colossal mistake. So surgical outcome was awful and I have not selected a follow up treatment.

Jump to this post

I had 2 surgeries on my thyroid to remove it. You have to follow up with your Dr. To get the right dose of medication. Sometimes it takes awhile to regulate it
20 years with out a thyroid and I feel fine without it because I certainly followed my Dr orders.

Liked by Dee

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last year at this time at 51 I was diagnosed with stage 2 Papillary thyroid carcinoma. I had surgery within 3 days as it was aggressively growing (was 3.2 when first found and 3 days later it was 4.9) my surgeons were amazing! I was sent for I-131 treatment but after 2nd thyrogen injection I had a severe allergic reaction so they halted the process and have been watching my numbers monthly. My surgeons were able to clean up my parathyroid and "transplant" it back in me and it is now functioning. It has been a hard long year but my numbers are still looking good, prepping for my whole body scan the old fashioned way, off the meds for 4-6 weeks and on lid diet. Glad cancer is out…and I'm alive and function again.

Liked by Dee

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@nancirae

I had 2 surgeries on my thyroid to remove it. You have to follow up with your Dr. To get the right dose of medication. Sometimes it takes awhile to regulate it
20 years with out a thyroid and I feel fine without it because I certainly followed my Dr orders.

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Hi. I’m Jane. May I ask where you were when you were exposed to radiation? Or other environmental exposures? I was at Fort McCellan
I currently have a radiation level of > 90% in tissues. Lots of severe allergies. Limited treatment. When I had they Thyroid surgery they sealed the incision with adhesive-glue.
I am allergic to the active ingredient. So sent me home ((3 Hour drive)). I was having issues breathing and within2 days my throat swelled shut. No airways open. Used epi 🖊
Took 7 days to get communication with the surgeon. So I guess I am really afraid to trust
I don’t know what to do. The unfortunate part is they clearly knew of the allergies and used it anyway also discharged me with the instructions to use an antibiotic that was also on my list of allergies. So any ideas?

Liked by Dee

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@nobody

Hi. I’m Jane. May I ask where you were when you were exposed to radiation? Or other environmental exposures? I was at Fort McCellan
I currently have a radiation level of > 90% in tissues. Lots of severe allergies. Limited treatment. When I had they Thyroid surgery they sealed the incision with adhesive-glue.
I am allergic to the active ingredient. So sent me home ((3 Hour drive)). I was having issues breathing and within2 days my throat swelled shut. No airways open. Used epi 🖊
Took 7 days to get communication with the surgeon. So I guess I am really afraid to trust
I don’t know what to do. The unfortunate part is they clearly knew of the allergies and used it anyway also discharged me with the instructions to use an antibiotic that was also on my list of allergies. So any ideas?

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Hi Jane,
I was in a children's hospital in Chicago when I was 11 years old. I am now 77. They use to give xray treatments for a growth on my neck. When I was 25 they notified me that I may get thyroid cancer and to watch it. I got Thyroid cancer when I was in my 60's. I have since had brain tumors and had surgery for one of them. They are meningiomas. The doctors at Mayo feel they are related to the radiation I had. I didn't have any allergies with the incision.

Liked by Dee

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Thank you for the information. Sounds like you have had a very hard time over the years.
I hope and pray you are doing better.

Liked by Dee

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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

Liked by Dee

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@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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Hi @lindameyerson, welcome to Mayo Clinic Connect. I'd like to bring @lbhoffman into this discussion. She has also had medullary thyroid cancer. While diagnosed with a different type of thyroid cancer, I'm sure that @bobr @sophia07 @jessea @nancirae and @nobody can also share their experiences and help answer your questions about what you can expect.

Linda, it is completely normal to feel anxious about the unknown. Do you know if you will have further treatment like radiation, chemo or targeted therapies? How are you doing with the levothyroxine? Have you had to adjust the levels?

Liked by Dee

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Hi! Melissa here in Jacksonville Florida. Diagnosed with PTC. Total thyroidectomy with neck dissection August 29.
WBS shows two new spots. I’m refusing RAI, do we wait and watch. I’m doing alright, but some days are so hard. Regret of surgery then feeling glad I did, but then regret again.
I would like to share my story. It’s a little long.
On August 29, I had a total thyroidectomy with neck dissection. One night stay in the hospital and I was sent home the next day. I had a JP drain that lasted longer than it should have.
The following week after surgery I developed what is called a chyle leak. It’s basically a lymphatic leak due to damage of lymph nodes. I was unable to have this diagnosed because of the storm we had threatening Florida. The doctors offices were closed. I was not told anything about what to look for that would be unusual. So on September 5th I got into the doctors and they knew exactly what it was. So then I started what was called the no fun diet, which is no fat. I get through the weekend started feeling a little rundown, and on September 9 the site where my JP drain was now hurting me. It was also red. So I went into the doctors that Monday on the 9th. The nurse practitioner that I saw stated that she didn’t think it was infected so she was going to call me in some antibiotics, they were never called in so then later on that night I called the on-call, and then that nurse practitioner called me in some antibiotics. But I was too ill and just decided to go to bed & take some Tylenol and hope for the best. I developed a fever, that 3:30 AM my fever got to 102. I took more Tylenol until my mom could take me to the doctors. Got to the doctors about 9 AM, they couldn’t see me until after two, so they said just go to the ER. So I went to the art and this is where turned for the worse. They had to admit me and started administering antibiotics right away. My neck was swollen, I felt miserable, could barely talk, and just felt like I was run over. Couple days past we found out I contacted staph at my JP drain site, and then later found out that it spread into my blood. Luckily I contracted the treatable kind of staph. So they put me on some heavy duty antibiotics that I’ve now been on since 10 September. I got to leave the hospital eight days later, my JP drain was removed. I’m now at home, with a 24 hour antibiotic drip. This will continue until the 27th of this month.
Let me first say that I am very grateful to the Lord that I contracted the treatable kind of staph. Because this could have been a lot worse.
I’d like to add a little tip. Because none of this was expected, I was looking for other signs of like calcium drops, issues because my thyroid was removed, mental changes, physical changes, I never expected to get an infection.
Here’s my suggestion for those of you who still have your thyroid but will be having it removed. After surgery I recommend that you have a low-fat diet. I only recommend this for at least three weeks after surgery. This will help with swelling, this will help if you happen to have any damage to your lymph system. I also recommend that you rest, don’t go out trying to do things, getting hot, and getting sweaty, exposing yourself to dirt and germs and cooties.
Give your body time to heal.
I don’t know if there’s anything I could’ve done to prevent myself from getting an infection. I could’ve gotten it from the hospital and it could’ve just taken a few days before it really took affect. I could’ve got it from some stranger sneezing out in public. I could’ve got it from myself.
I just wanted to share my story in case somebody else runs into the same thing. If you have a JP drain and you start out-putting milky looking liquid, please contact your doctor right away. If you have any pus looking stuff coming out of your drain contact your doctor immediately. If you develop a fever contact your doctor immediately. I was passed my 10 day mark, but I should’ve been
smarter. I am very fortunate to have had a very small amount of staph in my bloodstream & to have caught it early.
This has been a very scary, hard & trying couple of months on myself and my family! I am giving it to God to continue to get me through this.
I will come out being stronger and wiser!
Thank you for reading.

REPLY
@sweetgia003

Hi! Melissa here in Jacksonville Florida. Diagnosed with PTC. Total thyroidectomy with neck dissection August 29.
WBS shows two new spots. I’m refusing RAI, do we wait and watch. I’m doing alright, but some days are so hard. Regret of surgery then feeling glad I did, but then regret again.
I would like to share my story. It’s a little long.
On August 29, I had a total thyroidectomy with neck dissection. One night stay in the hospital and I was sent home the next day. I had a JP drain that lasted longer than it should have.
The following week after surgery I developed what is called a chyle leak. It’s basically a lymphatic leak due to damage of lymph nodes. I was unable to have this diagnosed because of the storm we had threatening Florida. The doctors offices were closed. I was not told anything about what to look for that would be unusual. So on September 5th I got into the doctors and they knew exactly what it was. So then I started what was called the no fun diet, which is no fat. I get through the weekend started feeling a little rundown, and on September 9 the site where my JP drain was now hurting me. It was also red. So I went into the doctors that Monday on the 9th. The nurse practitioner that I saw stated that she didn’t think it was infected so she was going to call me in some antibiotics, they were never called in so then later on that night I called the on-call, and then that nurse practitioner called me in some antibiotics. But I was too ill and just decided to go to bed & take some Tylenol and hope for the best. I developed a fever, that 3:30 AM my fever got to 102. I took more Tylenol until my mom could take me to the doctors. Got to the doctors about 9 AM, they couldn’t see me until after two, so they said just go to the ER. So I went to the art and this is where turned for the worse. They had to admit me and started administering antibiotics right away. My neck was swollen, I felt miserable, could barely talk, and just felt like I was run over. Couple days past we found out I contacted staph at my JP drain site, and then later found out that it spread into my blood. Luckily I contracted the treatable kind of staph. So they put me on some heavy duty antibiotics that I’ve now been on since 10 September. I got to leave the hospital eight days later, my JP drain was removed. I’m now at home, with a 24 hour antibiotic drip. This will continue until the 27th of this month.
Let me first say that I am very grateful to the Lord that I contracted the treatable kind of staph. Because this could have been a lot worse.
I’d like to add a little tip. Because none of this was expected, I was looking for other signs of like calcium drops, issues because my thyroid was removed, mental changes, physical changes, I never expected to get an infection.
Here’s my suggestion for those of you who still have your thyroid but will be having it removed. After surgery I recommend that you have a low-fat diet. I only recommend this for at least three weeks after surgery. This will help with swelling, this will help if you happen to have any damage to your lymph system. I also recommend that you rest, don’t go out trying to do things, getting hot, and getting sweaty, exposing yourself to dirt and germs and cooties.
Give your body time to heal.
I don’t know if there’s anything I could’ve done to prevent myself from getting an infection. I could’ve gotten it from the hospital and it could’ve just taken a few days before it really took affect. I could’ve got it from some stranger sneezing out in public. I could’ve got it from myself.
I just wanted to share my story in case somebody else runs into the same thing. If you have a JP drain and you start out-putting milky looking liquid, please contact your doctor right away. If you have any pus looking stuff coming out of your drain contact your doctor immediately. If you develop a fever contact your doctor immediately. I was passed my 10 day mark, but I should’ve been
smarter. I am very fortunate to have had a very small amount of staph in my bloodstream & to have caught it early.
This has been a very scary, hard & trying couple of months on myself and my family! I am giving it to God to continue to get me through this.
I will come out being stronger and wiser!
Thank you for reading.

Jump to this post

Welcome to Connect, @sweetgia003. “Give your body time to heal,” is very wise advice! The body has an amazing capacity to heal, but we don’t think of this when we are ill. We get so stressed––which, I feel, defeats the healing. Thank you for sharing your story!
Have your doctors offered any future treatment plan once you get off the antibiotic drip?

Liked by Dee, sweetgia003

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