Thyroid Cancer Group: Introduce yourself and connect with others

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

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?

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.

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?

Oh I’m off the drip! 🙂 I go next week for my three month tumor marker check & ultrasound is this week.

@sweetgia003, how did the 3-month visit go?

Hi. My number are good. My dr is still pretty positive cancer still remains. We check again in three months. I’m staying positive as I know I will be alright. 🙂 it’s still really stressful and lonely.
Thank you for asking.

Just joining this group. 20+ years ago diagnosed with papillary thyroid cancer, had I-31 treatment, thyroidectomy, and 3 surgeries within 7 years to remove enlarged lymph nodes in neck. Two questions, after all these years I'm just wondering if I should be using iodized or non-iodized salt? Also, I switched from synthroid brand to generic due to cost. Anyone know if this is a good thing or bad?

Welcome @trod @ljcarper @scb09 @aejohns to the Thyroid Cancer group on Mayo Clinic Connect. Pull up a chair and join the virtual circle.

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

Thank you! I was diagnosed with Papillary thyroid carcinoma in September 2019. I had a left lobectomy and isthmusectomy. So far, I’m doing great. My surgery was successful and I haven’t had to take any hormone replacement medication yet. I’m thankful that I had such a great team of doctors at Mayo.