# Are we overtreating Papillary Thyroid Cancer? How about the watch and wait approach?



## ETaylor1015 (Jan 4, 2013)

Hello everyone, I am 32 years old and was diagnosed in November with papillary thyroid cancer. I have a nodule that is currently less than 1 cm that was found incidentally in a carotid ultrasound 4 years ago. The nodule grew slightly so the doctor wanted to biopsy it (which come to find out they typically dont even biopsy nodules less than 1 cm). The biopsy came back positive for papillary thyroid cancer and according to the ultrasound they dont suspect any lymphnode involvement. The standard guidelines (which in our litigous society doctors treat to guidelines) is a full TT and radioactive iodine. I have heard this from 4 different surgeons. Here is my dilemma..I have read in many articles that papillary thyroid cancer(PTC) is being over treated. In some countries a PTC in a nodule less than 1 cm is a benign diagnosis. I have also read that 35% of the population that die of natural causes at old age are found to have PTC when they do autopsies. Although all surgeons/endos have recommended a TT they also say if they didnt find this in me for 20 years my prognosis would still be close to 100% survival rate. Had I never had a carotid ultrasound I may have never found it. Yesterday I was told by the doctor I am scheduled to have surgery with that if I did nothing I would most likely die from something else in my life, not this. Has anyone had these same thoughts and have opted to just keep an eye on it and not do a full TT? I am very on top of my health and would go to the doctor frequently for ultrasounds to see if the nodule is growing. I am just concerned that in this country we hear "Cancer" and rush to get it out, the cost of that is the nightmare of living without a thyroid and exposing my body to radiation which in turn can cause more cancer. Is there anyone out there that took the observation approach, and have been living with PTC?


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## pamperwithrachel (Jan 31, 2013)

I think it all comes down to how do you feel? I know some doctors are more aggressive for us when we are young in treatment, I'm only 28 and had my thyroid taken out less than a year ago, but I was heavily symptomatic and had a combination of benign and smaller malignant nodules. 
At the end of the day its up to you. Research alternative treatments, such as taking suppressive thyroid replacement if it's an option for you. You do have a choice in what you do, and honestly had I not had such severe symptoms I would not have opted for a thyroidectomy, it's really very rough, and now 11 months after I'm still not able to be stabilized on any medication. That said expect frequent follow ups and track the progression and any symptoms you have, because it can get bad in a matter of months.


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## susieintexas (Mar 4, 2012)

ME! but from the other end. Had hives, found hashi's and a 4cm mass, biopsy said benign but they said i needed it removed because of it's size. I had zero symptoms and had i not gotten the hives from the thyroid dump, I would have not known about it.

During surgery they removed thyroid and 10 lymph nodes(not planned). Path said it was PTC, 2 spots. PTC came back 6mths later. Everyone was 'shocked' but the second surgery is MUCH more dangerous. My left vocal cord is already paralyzed from scar tissue and when they go back in to remove the 'angry' lymph node on the right vocal cord, I will lose my voice.

We are 'watching' it until we can't just watch it anymore. I don't know how long that will be but it is important to me to keep my voice as long as possible.

There are risks with every surgery. Had I known then what I know now, I would have watched it until it was causing me issues, like swallowing or breathing. Esp with your's being so small I would totally just wait assuming it will not drive you crazy in the mean time.


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## I DClaire (Jul 31, 2011)

I had my thyroid removed in September, 2011. I'd had blood tests, ultrasound tests and nuclear scans every six months for almost two years but the doctor I was seeing (actually a Physician's Assistant) absolutely refused to do anything else. Everytime I'd have the tests she'd say the same thing, that we'd just watch it.

To make a long story a little shorter, I finally demanded a referral to see an endocrinologist who continued the same tests for close to a year. Everytime the results showed old nodules growing and new ones developing.

Finally one nodule was the size that would need FNA. To this day I'm not sure why I didn't want to do that. I'd read that it wasn't always accurate and I guess I know myself well enough to know that I'd never stop worrying, even if a FNA was negative. I also felt like the writing was on the wall - at the rate all this was advancing and the fact that the drug I was on seemed to make me feel so bad, it seemed to me like sooner or later I'd have to have surgery and the longer I waited the more complicated it would be.

It turned out I had a tiny papillary cancer buried deep inside my thyroid. I, thankfully, was spared any further cancer treatment except a Thyroglobulin Tumor Marker blood test and ultrasound of the thyroid bed every few months for five years.

Also, the surgeon found an overgrown, swollen, cyst and nodule-filled thyroid that was three times bigger than he'd expected. My parathyroids were all injured getting the monster thyroid removed but they eventually recovered.

I've had a lot of trouble with the thyroid hormone replacements and have done a lot of soul searching, wondering if I made the right decision? I have no regrets! I'm 66 years old - maybe I would have outlived my little tumor but peace of mind is a big thing with me. I honestly believe intuition told me I might have cancer, it runs rampant in both sides of my family. I feel like I dodged a bullet! I knew I wasn't going to get any better and I'm satisfied that the choice I made was right for me.


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## kidsabc (Feb 20, 2013)

Hi! I was just diagnosed with a 8mmx10mm papillary carcinoma by biopsy. Same boat; ultrasound doesn't show lymph node involvement, etc. However, I have opted to take the aggressive road. My reasoning? I know 5 other people that have been diagnosed. 3 waited a year after concerns were brought up and all 3 ended up having lymph node involvement. Since you are so young, why risk it? I'm 42 and have eight kids,a 20 year survival rate isn't enough for me... I want 40 years.

Having said all that, I understand what you are saying and I've read those same articles.I like them; they make me feel optimistic. And at the end of the day, it has to be your choice. Not having a thyroid can't be much fun. Yet, I spazed when cancer came into the conversation, so I'm sure personality comes into play, too. You sound fairly calm about the situation, wheras, I was a spaz at the cancer word.

Sorry to hear your dilemma. Keep us posted on what you decide. Goodluck!!


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## kidsabc (Feb 20, 2013)

ETaylor, I was wondering what you decided? I had an update on what has transpired with me... and lo-and-be-hold it is more passive than I original figured I would ever go. I've learned a LOT and would love to share with you.

Also, if you are looking for an institure that would be willing to be more passive with your cancer, MD Anderson in Houston, Texas would be a good fit for you.


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## ETaylor1015 (Jan 4, 2013)

Sorry I haven't gotten back to you in a while. I did end up having a total thyroidectomy which I am very glad I did. It turned out it was more serious than all the initial thoughts based on the small tumor size. It turned out that I had the tall cell variant of papillary which is more aggressive, I had two positive lymphnodes, and the B RAF mutation which makes this more aggressive to come back. I guess this is why no doctor wants to take chances based on ultrasound alone..they really don't know what they will find until they get in there and send they thyroid for pathology. I even ended up needing a fairly high dose of radioactive iodine which was something I wasn't planning to get either. What is the latest with you?


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