Thyroid Cancer Group: Introduce yourself and connect with others

Hi. I've been diagnosed with papillary thyroid cancer that has invaded my trachea. It was found by way of checking something else. I was hoarse for a long time with a weird cough and then started coughing up blood. When biopsied there were thyroid cancer cells in my trachea. That's what lead the dr to check my thyroid. Tomorrow I will undergo having my thyroid, lymph nodes and a section of my trachea removed in Mayo Clinic Phoenix. I've had quite a few surgeries in my 66 years but none of them made me as nervous as this one.

@daroca, checking in. I can imagine that you were nervous going into this surgery. How did it go? Don't feel obliged to answer that if you're not ready. Just know that I'm thinking about you.

@maureenelizabeth, it's been less than a year since you had a total thyroidectomy and lymph nodes removed. Any tips post surgery to offer Daroca?

I also want to take a minute to welcome new members, @michelleaustin and @mimi50. Will you share your thyroid cancer story? What type do you have? How are you doing today?

@daroca I hope your surgery went well. Last April I had a total thyroidectomy and lymph nodes removed due to papillary thyroid cancer. It was a very scary time. As far as the surgery itself, it went well with no complications. It took a little time for the parathyroids to get going again, so lots of calcium was on the menu. It took until August to get my TSH to the level my oncologist wanted which is 0. Now it has stayed at 0 ever since. I take the levothyroxine in the night when I wake up, usually around 2:00 am. I didn’t notice any huge side effects, some hair loss, my emotions were all over the board for a bit, I was hot all the time. These have all gotten better, I have all kinds of fuzzy new hairs and I’m not a bag to my husband anymore;) I’m still hot but I think that’s age related...I’m 54. I see my oncologist every 3 months for follow up, I still am always afraid there’s going to be bad news when I go, but I told myself the next appointment in April, if it’s all good I’m going to stop worrying and let the fear go. We’ll see how that goes. I hope you are healing and doing well. I’m here to help if you have any questions.

Welcome @gamerguy. Feel free to pull up a virtual chair and join our circle. Tell us a bit about you and your journey with thyroid cancer.

@maureenelizabeth, interesting timing to take your levothyroxine at 2 am, when you wake up. Do you find that reduces dealing with side effects?

@colleenyoung I’ve been reading a lot on the benefits of either taking it in the morning or before bed and how certain foods containing calcium, magnesium, and fiber should be avoided within several hours of the dose. I wake up like clockwork around 2:00 so I figured that would be a perfect time to take it....nothing to interfere with absorption.

My name is Patty and my husband had been diagnosed with thyroid cancer 10 yrs ago. He had his thyroid removed at that time. He went to all follow up appts/tests. We thought all was good and the thyroid cancer was behind us. In January of this year he was diagnosed with prostrate cancer. We opted for a second opinion for how to address the cancer through Mayo Clinic in Rochester. Everyone there was wonderful and so he opted to have his prostrate removed by a Mayo surgeon. Since the cancer had not spread past the prostate to any other parts of his body, we thought cancer was once again behind us. However, in June of this year, we discovered he had a large tumor behind his nasal area, which was cancerous and was determined to be non-Hodgkin lymphoma. When they did a PET scan, they also found (and later confirmed) cancerous thyroid tissue. Apparently when his thyroid had been removed 10 yrs ago (not at Mayo) they did not get all of the tissue. Brian is currently undergoing chemo treatments for the non-Hodgkin, but once that is done, a surgeon at Mayo will have to operate to remove the metastatic thyroid cancer. I know we are at the best place possible for care right now, but I am so scared that the cancer issues are never going to end.

Oh, Patty. Three cancers and seemingly unrelated. That is most definitely not the lottery you want your husband to win. You are good here in the thyroid cancer group. I also encourage you to join the Blood Cancers group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/

You are in good hands at Mayo Clinic.

I'd also like to tag fellow members to join me in welcoming you and to share their experiences with you @jessea @bobr @nancirae @lindameyerson @sweetgia003 @jlanderson76 @ljcarper @aejohns @trod @sophia07 @maureenelizabeth @daroca

Patty, What chemo is Brian getting for NHL and when will he be done? Where has the thyroid metastasized to?

Thank you for your response. I will also join the blood cancer group. He is getting R-Chop chemo treatments. They will end in Oct. then they will have to operate to remove the remaining thyroid tissue. I believe they call it metastatic because of his other two cancers. We were at Mayo this week and new CT and PET scans show the tumor behind his nasal area has shrunk. It also appears the cancerous thyroid tissue has shrunk a little. We will the surgeon about that when we return to Mayo on another trip.

Oh, I understand now. The cancer behind his nasal area is actually metastatic thyroid cancer. Do I have that right? Is the lymphoma a second cancer diagnosis or also metastatic thyroid cancer?

Hi Colleen, this all gets very confusing to me. I believe the lymphoma is a cancer all on its own, just as the prostate cancer was.