My thyroid cancer has spread....

My husband was diagnosed with papillary thyroid cancer nearly 2 years ago. He had Hashimoto's Thyroiditis which they told us never goes into cancer. Her was monitored and had negative needle aspirations for years. We finally agreed to have the lump in his thyroid removed. He had a great surgeon, but in two days, were called back because he tested positive for cancer. He had a total thyroidectomy and some lymph node involvement. Five nodes came back hot from the fifteen removed. He had RAI, but in a mistake, he had a CT scan with iodine contrast that showed multiple tiny spots in his lungs. When he returned for his second follow up, his thyrogen level was high. He also has the antithyrogen antibody. It is present in 20-30% of all papillary cancer patients. It's just your body trying to fight the cancer. It just makes monitoring more difficult. The elevated level showed more hot nodes in the neck. Last May, he had a modified radical neck dissection which removed hundreds of nodes. Again fabulous team of surgeons, Grannin and CaJacobs. It can take years for thyrogen levels to come down, especially if you have the antibody. My husband's onco is Dr. Edward Silberstein. He is one of the top docs in the country and is publishing the bible on RAI treatment protocol. He's at the University of Cincinnati, the number one rated hospital for thyroid cancer in the country. More scans last week, and all was stable and the microscopic spots in the lungs are stable and unchanged after two years of intensive monitoring. Waiting for his next T test in April again and if it doesn't decrease, he will have a follow up CT scan with contrast. The images are smaller than the head of a pin in his lungs, so too small to biopsy. Have heart! Get a doctor you have a great relationship with. Our doc is Yale educated and he gave us his cell phone number and calls personally with each test result often late in the evening after the end of the day. Don't pay attention to the mortality rates posted! Dr. Silberstein pointed out those numbers reflect all cancer types and are over a decade old. To put this in context...what did your cell phone do 10 years ago? I think cancer treatment has gone farther than the phone! Prayers and good thoughts!

I think you should go for Immunotherapy - an alternative therapy for cancer treatment.It is painless and even has no side effects. It can also go parallel with other therapies.

I, also, have been told by my endocrinologist that papillary thyroid cancer is just that even if it spreads to other parts of the body. I have had 2 doses of radioactive iodine after my thyroid was removed and have had cancerous lymph nodes in my neck removed since 2009. I just found out my thy globulin levels are on the rise again which,of course, I'm not happy with but I'm confident in knowing that it is just papillary thyroid cancer so not very worried. My only worry is that I will be seeing a new endocrinologist since my old one moved. However my husband has done some research and says that PTC can become Hodgkin's lymphoma. Does anyone know anything about this?

Could you send me specialist info , I would like to contact him , thanks Tom

Hello,
I was diagnosed at 13. I hope everything is going alright. Stay a fighter. I am currently under radiation and doing some web searching. I will pray that you are alright still. Just stay calm, because God is looking after you.

I too am a papillary thyroid cancer survivor. I was also told that I also had Hashimoto's disease which is an autoimmune disease that attacks the thyroid. I had horrible gas and stomach aches which docs told me was irritable bowel syndrome. I felt bloated all the time, loose bowels, red skin, etc. Turns out that many with thyroid issues have gluten issues as well. I have eliminated gluten and dairy (which also bothers me) from my diet and I no longer have gas, discomfort or the red skin/blemishes....if I cheat and eat gluten or dairy, it all comes back again. It is a hard diet change to make but I feel so much better....cholesterol is down too even though I am eating more meat.

Hi, I have five children and was diagnosed with papillary Casanova while I was pregnant with my last , five months ago. I have chosen to hold off on the surgery in hopes of being able to cure it. I just have one nodule, 1.5 cm. I would greatly be interested in the thyroid cancer specialist you mention. Thank you!

Get checked for pheochromocytoma. You might have MEN 2. Thyroid and pheo goes together. Pheos cause adrenaline to go out of control causing blood pressure to go out of control.

Did they have you use a laxative every day after (next day) you had your radioactive iodine. I was told that a bowel movement had to be made everyday since the RAI would sit in the gut/intestines and would appear radioactive and thought to be TC. Speak to your physician about that, I also received this laxative usage guidelines from the ThyCa Survivors website and several write-ups by researchers into TC.

i m 35 years old and found out have follicullar cancer.and ll ve full tyroid rrmove in next few weeks aftr tht ll ve radio iodine.doc said papillary and follicullar r curable. i wonder how much its true.

You should never stop taking your thyroid hormone replacement. That could kill you sweetie

Hi, I am 36 and was diagnosed with a Follicular variant of Papillary Carcinoma back in 2004. They operated and took my left half. That was the extend of my treatment other than thyroxine meds. Ive had scans on my thyroid ever since but none on lymph nodes etc. I have yearly checks on my T4 TSH etc but until last year when I requested, they had never checked my tg. Its not a great tumor marker if you haven't had the entire gland removed. Cut forward 10 years, I got married (back in 2004, 6 weeks after my diagnosis) and have 4 children 11,9,8,2. About 4 years go I started loosing weight, which I have never been able to do. I was concerned but got pregnant and the weight came back. After my son was born it fell off me again. I also started to experience terrible pain in my left hand. I got scared about the cancer as I have read many scholar articles regarding thyroid cancer over the years that say it can stay dormant for years even decades. I insisted they send me to a thyroid specialist. They did. She said its highly unlikely to be my thyroid cancer, but by this stage, I had pain in my shoulders, back, hips and legs also... plus my hand was no barley able to be used. I cried in her office for someone to help me. She sent me for a whole body bone scan. Results were multiple locations of possible arthritis... in pairs all over my body... plus two hot spots on my left hand, the bone in my hand that I told her my pain was terrible. and a small spec on a rib. I was sent for a ct for rib and X-ray for hand. Told my hand was ok and sent to Rheumatoid Arthritis specialist. The CT however found a 5mm and 6mm tumor in the upper segment of my right lung plus multiple bilateral across both left and right lung. I was sent for another scan 3 months later and no new growths and the others had not grown either. They did say that if it was an infection it should have cleared by now. Another scan a year later showed the same thing. So now Im expected to wait another year to see if they have grown again. Im scared sh*tless!!!!! I have this deep feeling that it is my cancer, they didn't get it all, and now we are watching to let it spread even more. Im 38.. (think I said 36 above lol....) at 40 everything changes apparently, staging etc... over 40 has higher risks so I would rather clear this sh*t up now thanks!

AND THE ONE THING I HATE IS BEING TOLD I HAVE THE GOOD CANCER, with all the follow up etc, you hear it a lot. And that is rare etc also..

Hi, can you give me the exact details of what you took and the amounts I am researching this for my dad

Hi dalt1140461 not sure how you will get back in touch with me. Do I give you my email

Hi sorry I just created an account. I want this information for my dad.

So wonderful you and your mom were healed