Thyroid Cancer Recurrence

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

BellsAngel69 said:

Hi Julia,
In Dec. 2003 I found a lump in my neck under my collar bone, had it removed, and was then diagnosed with Thyroid cancer. I had a total thyroidectomy, then the RAI treatment. For the next two years I did the low iodine diet and uptake scan, and I was clean. The following year my doctor let me skip the scan because my TSH levels had been undetectable. I saw my doctor every six months and had blood tests the whole time and had been fine. The next time I went for blood tests after skipping the scan, my TSH levels were rising. They put me on the diet and did another scan. Not even five minutes after I left, they called me on my cell to ask if I could come back. They wanted to do something else. I was thinking, what the hell? I went back and they did another scan. When the results came back, it showed uptake in my left posterior hip. Next, I had another RAI treatment in the hospital to take care of the reoccurence. After, I had another scan and it showed I was clean. Six months later, I had another blood test and my TSH levels were even higher, so they ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't absorb into the bone, so it was ineffective. I had surgery a few months later to remove the dime sized spot on my bone. Post surgery, my TSH levels hadn't changed, but they weren't concerned. Six months later, my blood tests showed my TSH levels were even higher so I had another PET scan. It was clean and they sent me on my merry way. I just had another blood test in Nov., and after three weeks my doctor called to tell me my TSH level were FOUR TIMES higher than before, in only six months. I totally freaked out. The PET scan showed nothing but my TSH levels are jacked way up. Now, I'm on the low idodine diet yet again, and they are going to do both a PET scan and and low-dose RAI scan to see if anything shows.

Truthfully, I won't be convinced this time if the scan is clean. I'm going to seek out another doctor for another opinion. I don't care where I have to go, or what tests I have to have done, I won't be satisfied. My TSH level is 121. Back in May it was 29. When my level first started to rise, it went from 2, to 4, then 9. My doctor didn't even tell me my TSH was elevating until it went up to 9. I felt betrayed and told him that I had the right to know. He said it wasn't that high so he wasn't too concerned. The bottom line is it should be zero and when it was rising he didn't tell me. Post surgery my level was 15, then 29, now it's 121. So if the scan says I'm clean, I'm not going to believe it.

I'm very frustrated, but have kept upbeat this entire time. I admit, I've had my bad moments, but I'm not going to let this beat me. The hardest part is the initial diagnosis was so promising, and here I find myself with my second reoccurence in two years, and it just makes me so angry. They paint this rosey picture. They told me thyroid cancer is 99% curable and very treatable, yet I find myself in this situation.

I'm 49, I was 43 when diagnosed. I have an 18 year old daughter in college and a 16 year old son in high school. I plan to live a long, happy life, long enough to be a pain in the butt to my kids. Hey, what goes around, comes around, you know?

I just hate the waiting part, and there is always a seed of doubt in the back of my mind. Is it gone, or still there, lurking, waiting to rear it's ugly head again.

It's hard, but I'm so happy I've found this place for support. I'm sure it will make all the difference in the world.

Keep your head up and don't settle for an answer. If you're not happy with what they're telling you, get a second opinion or as many as you need until your satisfied.

1nathaliakarina said:

I was diagnosed with
I was diagnosed with Papillary cancer 6 months ago. I had my whole thyroid removed. I went off Cytomel for two weeks and my experience was different. After 6 days of cytomel I started to have a muscle breakdown and was in constant pain all the time.. My muscles ached all the time. I just felt real bad. You should take it easy, and just relsx before your RAI treatment. Best of luck

BellsAngel69 said:

Hi Julia,
In Dec. 2003 I found a lump in my neck under my collar bone, had it removed, and was then diagnosed with Thyroid cancer. I had a total thyroidectomy, then the RAI treatment. For the next two years I did the low iodine diet and uptake scan, and I was clean. The following year my doctor let me skip the scan because my TSH levels had been undetectable. I saw my doctor every six months and had blood tests the whole time and had been fine. The next time I went for blood tests after skipping the scan, my TSH levels were rising. They put me on the diet and did another scan. Not even five minutes after I left, they called me on my cell to ask if I could come back. They wanted to do something else. I was thinking, what the hell? I went back and they did another scan. When the results came back, it showed uptake in my left posterior hip. Next, I had another RAI treatment in the hospital to take care of the reoccurence. After, I had another scan and it showed I was clean. Six months later, I had another blood test and my TSH levels were even higher, so they ordered a PET scan. The PET showed the same spot in my hip. The RAI didn't absorb into the bone, so it was ineffective. I had surgery a few months later to remove the dime sized spot on my bone. Post surgery, my TSH levels hadn't changed, but they weren't concerned. Six months later, my blood tests showed my TSH levels were even higher so I had another PET scan. It was clean and they sent me on my merry way. I just had another blood test in Nov., and after three weeks my doctor called to tell me my TSH level were FOUR TIMES higher than before, in only six months. I totally freaked out. The PET scan showed nothing but my TSH levels are jacked way up. Now, I'm on the low idodine diet yet again, and they are going to do both a PET scan and and low-dose RAI scan to see if anything shows.

Truthfully, I won't be convinced this time if the scan is clean. I'm going to seek out another doctor for another opinion. I don't care where I have to go, or what tests I have to have done, I won't be satisfied. My TSH level is 121. Back in May it was 29. When my level first started to rise, it went from 2, to 4, then 9. My doctor didn't even tell me my TSH was elevating until it went up to 9. I felt betrayed and told him that I had the right to know. He said it wasn't that high so he wasn't too concerned. The bottom line is it should be zero and when it was rising he didn't tell me. Post surgery my level was 15, then 29, now it's 121. So if the scan says I'm clean, I'm not going to believe it.

I'm very frustrated, but have kept upbeat this entire time. I admit, I've had my bad moments, but I'm not going to let this beat me. The hardest part is the initial diagnosis was so promising, and here I find myself with my second reoccurence in two years, and it just makes me so angry. They paint this rosey picture. They told me thyroid cancer is 99% curable and very treatable, yet I find myself in this situation.

I'm 49, I was 43 when diagnosed. I have an 18 year old daughter in college and a 16 year old son in high school. I plan to live a long, happy life, long enough to be a pain in the butt to my kids. Hey, what goes around, comes around, you know?

I just hate the waiting part, and there is always a seed of doubt in the back of my mind. Is it gone, or still there, lurking, waiting to rear it's ugly head again.

It's hard, but I'm so happy I've found this place for support. I'm sure it will make all the difference in the world.

Keep your head up and don't settle for an answer. If you're not happy with what they're telling you, get a second opinion or as many as you need until your satisfied.

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 Mel,

I'm searching and researching and then some trying to find out everything I can about this. My son was diagnosed with Stage 4 Papillary Thyroid Cancer in July at age 19. A head/neck scan showed it was throughout his neck, covered his carotid and spinal and larynx nerves, and as far down into his chest as the scan could show. They refused to do a full-body scan until treatment. We are 3 weeks out of a very invasive 9-hr surgery at Vanderbilt to remove it. Dr. Sinard led the team. They removed 59 lymph nodes, all but 5 were full of cancer. We go today to meet with Dr. Parks at Vandy to consult about treatment now. They are saying the A1-31 will get anything left. However, after reading your post, I'm not so sure. You wrote that had you known 10 years prior before reoccurrences, that your husband would have gone another route. Could you please give me advice on this? I am reeling right now and so scared for my son. Any advice you can give me is greatly appreciated. I hope I am not intruding on you by asking. 

Thank you, 

Heddi