Thyroid Cancer Recurrence

Had stage 2 papillary thyroid cancer in 2012.  Metastisized into my neck muscle & had some glands removed. Currently have no insurance (Medicare kicks in in Feb 2015) and....it's apparently back.  Just got my TSH down to .04 and waiting on the thyroglobulan test to come back, then it's an ultrasound Right now focusing on finding out just how much and where it's occured at this point.  Then, how do I pay for it.......

Anyways, want to say to all not to give up, fight for your patient rights. It's scary! I know! I had 3 surgeries in 45 days back in 2012 before the RAI therapy.  No one told me how critical it was to have a yearly exam.  Well, now I know.  And, trust me, I've tried to get the affordable care insurance.....somewhere in limbo. So, please hang in there.

I'm blessed with a wonderful family and know that somehow, some way, I will get what I need.

mel123 said:

Julia, my husband, 43, was first diagnosed with papillary thyroid cancer at the age of 33. He is currently on his 4th reoccurance. Four of those followed with I-131 radiation, which obviously didn't help. He is now a patient a M.D.Anderson Cancer Hospital in Houston, TX. Our last appt. was March 07, he now has 2 small tumors in the right lung, which changes our yearly appts. to every 6 months. One of the doctors there say that he was not treated aggressively when he was first diagnosed. A higher dose of I-131 could have possibly made a difference. Not only was the thyroid diseased by it had spread to everything in the neck plus 6 inches into the chest. They cleaned him out with surgery, I-131, and said he was clean as a whistle. Exactly 2 yrs later, it was back on his coritoid arteries, 2 yrs after that it returned again in the neck area, another 2 yrs later it was back again, this time was the worst. His thyroglobulin level was 385, yet nothing was showing in the scans. Without surgery, they blasted again with I-131. Then told us he was cured. In disbelief, we headed for Vanderbilt Hpt., there they found that he was covered again, esophagus, vocal cords, coritoid arteries, veins, trechea, tumors under clavical bones, and still upper chest area. To our surprise the cancer pealed off and had not yet penetrated the organs. After surgery at Vanderbilt they referred us to MD Anderson. It has really been an great experience considering the circumstances. They seem to be up on all the latest procedures, medicine, etc. I know for a fact if he would of known about this 10 yrs ago he wouldn't be in the boat he is now. It is a little expensive to travel every 6 months from TN to TX, but when we look at our girls, ages 10 and 13, we know it will be well worth it. Advice to you would be to get to a well established research hospital asap. They have so much more technology and specialize in certain cancers. Take control of your life, not all doctors know what they are doing, we have learned the hard way. I basically have researched this myself for the last 10 years, but my husband only wanted to listen to and believe his doctors, now we see what we have known all along. Use your own judgement and always get a 2nd or 3rd opinion. Keep going untill you feel comfortable with what you hear. Its very time consuming, but worth every second. Hang in there, don't be just another number to your doc, find a specialist, better yet 2 or 3. I'm sure MD Anderson can help you, they also have a web-site under their name. Hang in there! Wish you the best! Mel

Hi Mel123, 

I am on my first (and hopefully last) recurrence, and am transferring my care from UAB to Vanderbilt. Dr. Sinard is scheduled to perform a LND on me next month. I too, wonder if UAB was aggressive enough with my initial surgery and RAi. How is your husband doing today and did he begin his care at Vanderbilt?