# 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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## Lovlkn (Dec 20, 2009)

If it were me - I would have the TT and be done with the continual follow up. I would imagine as the nodule grows it will cause issues of thyroid imbalance.

Living without a thyroid isn't the end of life - for me it was the beginning.


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## Octavia (Aug 1, 2011)

Hi, and welcome.

I can totally see your point. I did not do a watch and wait approach. My tumor was over 3 centimeters by the time it was found (I was 41), and was causing issues with voice and swallowing, so I had it out. At that first surgery, we did not know it was cancer, so I had a second surgery a few weeks later to remove the other half of my thyroid. To me, a better argument could be made for keeping the non-tumor lobe of the thyroid, rather than not removing tumor itself.

There are also PTC cases like Roger Ebert's, which did not turn out so well:
http://www.esquire.com/features/roger-ebert-0310-2


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## joplin1975 (Jul 21, 2011)

No, I don't think so.

It's easily treatable in its current state and while the likelihood that things will turn out really bad is small, the outcome of those cases is devastating. So why roll the dice?

For what it's worth, I considered myself asymptomatic before surgery, I can tell you now that I can't remember when I last felt this good.


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## ETaylor1015 (Jan 4, 2013)

Thank you for your insights. Another thing I didnt mention in my initial approach is that I have perfect thyroid levels (always have) and no symptoms of the nodule. It is so small I cant feel it if I try. I also forgot to mention that the articles that I read that downplay PTC speak of this in women. It is known that thyroid cancer is typically more agressive and serious in men. Please keep the thoughts coming! I do have the surgery scheduled on January 25th because I havent wanted to take any chances, but I just want some last thoughts from people before I take out my precious thyroid.


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## sleepylady (Mar 18, 2012)

From what I have read thyroid cancer does not always present with symptoms and many people have normal thyroid levels.

Good luck.


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## KeepOnGoing (Jan 2, 2013)

I was in a similar situation this summer - they found a 2cm PTC, encapsulated with no evidence of capsular invasion. My surgeon did discuss with me that latest thinking was that these cancers were being overtreated. We ended up with a compromise - I had the other half of my thyroid removed (it was clear) and then the oncologist said that he didn't think RAI was necessary. It's only 3 months on, so I can't comment as to whether this approach turns out well.

The thing which worried me was the lack of evidence that leaving these cancers untreated didn't affect survival rates. Apparently a clinical trial is to start shortly in the UK. Does anyone know of any evidence from the US / Canada?


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## I DClaire (Jul 31, 2011)

I had nodules (and cysts) that were growing. Initially my doctor very much said we should watch my thyroid and I had ultrasounds and nuclear scans and bloodwork every six months for over two years. Nobody ever said the word "cancer" to me.

I was taking a drug that I thought was giving me fits so I insisted my doctor refer me to an endocrinologist. She absolutely did not want to and our final words were, "you're not going to stop until you do something you'll regret."

A few months later I did have my thyroid removed and there was a tiny cancer inside the thyroid - it would have never been found with FNA. I felt like I'd dodged a bullet. My thyroid was three times bigger than anyone had suspected and the surgeon said it was a horrible mess, so bad that all four parathyroids were damaged during surgery.

I've also read the figures about the number of autopsies that indicate someone had thyroid disease and I don't doubt it. I've also read how many people are diagnosed for the first time when they're admitted to nursing homes or prisons.

Knowing myself, I'm thankful I had my surgery. It hasn't been an easy recovery but I'm 66, I live with unrelenting stress, I have other health problems, etc. Cancer runs rampant on both sides of my family and is something I'm always concerned about. Peace of mind is of utmost importance to me.


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## nikkij0814 (Jul 13, 2011)

I've had a TT, and I WISH I had taken more of a wait and see approach. I initially had only 1/2 my thyroid taken out, (the 1/2 with a tumor) and when I still had 1/2 a thyroid I felt better than I had in years. (You can live perfectly normally with 1/2 a thyroid, so long as the 1/2 left accommodates for the missing 1/2 which it normally does) Once they discovered the papillary carcinoma, they had me come in for another surgery to remove the other half so that I wouldn't have to "wait and see." If I had a time machine I'd have sooner kept the good half and had it monitored regularly. It's caused a great deal of strife in my life, has been very difficult to medicate properly, and was the cause of a complete breakdown... I'm now flying from Oklahoma to Minnesota for treatments at the Mayo Clinic in order to try to get things straightened out, now that I've been through living hell for 2 years. I've spent thousands of dollars and feel like I've lost the last 2 years of my life to this silly cancer that isn't so dangerous. I am glad I had the tumor itself removed, but I wish I still had my good 1/2 a thyroid. If I could go back and do it again, that's what I'd do. I'm angry that it wasn't proposed as an option, and that I wasn't warned of all of the emotional problems that can come with missing your thyroid. Rant over.


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## nikkij0814 (Jul 13, 2011)

And one more thing - they damaged my parathyroid while they were taking my thyroid out, so now I'm being seen for that too.


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## annieo (Sep 26, 2012)

I had a lump on my thyroid that my primary care doctor discovered. I was sent to an Endo who did an ultrasound and then a FNA. He took 7 needles worth of aspirate and the results came back benign. He was pretty certain there was no cancer but he did explain there is always the possibility it was missed. I choose to just be monitored. My thyroid was functioning fine at the time. 2 years later a 2nd FNA was taken and again it came back benign but at this point my goiter was pretty big and pushing my trachea over so I asked to have it removed. I choose to have a TT. Now if the very first FNA came back suspicious or cancerous I would have had the TT right away. For me knowing there was cancer in there regardless of whether it would cause issues down the line would cause me stress and anxiety. I would be constantly wondering if it was spreading etc.

Ann


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## ETaylor1015 (Jan 4, 2013)

nikkij0814 said:


> I've had a TT, and I WISH I had taken more of a wait and see approach. I initially had only 1/2 my thyroid taken out, (the 1/2 with a tumor) and when I still had 1/2 a thyroid I felt better than I had in years. (You can live perfectly normally with 1/2 a thyroid, so long as the 1/2 left accommodates for the missing 1/2 which it normally does) Once they discovered the papillary carcinoma, they had me come in for another surgery to remove the other half so that I wouldn't have to "wait and see." If I had a time machine I'd have sooner kept the good half and had it monitored regularly. It's caused a great deal of strife in my life, has been very difficult to medicate properly, and was the cause of a complete breakdown... I'm now flying from Oklahoma to Minnesota for treatments at the Mayo Clinic in order to try to get things straightened out, now that I've been through living hell for 2 years. I've spent thousands of dollars and feel like I've lost the last 2 years of my life to this silly cancer that isn't so dangerous. I am glad I had the tumor itself removed, but I wish I still had my good 1/2 a thyroid. If I could go back and do it again, that's what I'd do. I'm angry that it wasn't proposed as an option, and that I wasn't warned of all of the emotional problems that can come with missing your thyroid. Rant over.


Thank you for sharing your story. I have really pushed for only one lobe out but no surgeon will do this. They are all treating to todays current guideline of a TT. They say that papillary is not typically contained to one nodule and it is microscopically throughout the whole thyroid. You bring up a great point though, I think I should just take out the known cancer and take a "wait and see" approach on the other half of my thyroid. In my mind if it recurs over the next few years that is at least more years I have of part of my natural thyroid functioning. This is such a slow growing think I am not going to wake up one day with a massive nodule. So what is the mayo clinic doing for you at this point? I heard that the Mayo clinic is one facility that is more conservative and I have read some articles from them that raise this question of it being overtreated. My endo even said they are starting to take out only a lobe once again. I have an appointment with the Mayo in the Jacksonville for a final opinion next week. Hopefully they will tell me something differently! What have been your main problems with the medications over the past years? How old are you and how big was initial papillary tumor?


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## joplin1975 (Jul 21, 2011)

While I think my case was a no-brainer for TT (my known cancerous nodules were 2.5, 2.1, and 2.0 all on the left side), I thought it was interesting that they found three cancerous nodes on the right side and three nodes that were cancerous. All of those were not found on the two pre-op ultrasounds and RAIU...standard bloodwork looked good.


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## ETaylor1015 (Jan 4, 2013)

KeepOnGoing said:


> I was in a similar situation this summer - they found a 2cm PTC, encapsulated with no evidence of capsular invasion. My surgeon did discuss with me that latest thinking was that these cancers were being overtreated. We ended up with a compromise - I had the other half of my thyroid removed (it was clear) and then the oncologist said that he didn't think RAI was necessary. It's only 3 months on, so I can't comment as to whether this approach turns out well.
> 
> The thing which worried me was the lack of evidence that leaving these cancers untreated didn't affect survival rates. Apparently a clinical trial is to start shortly in the UK. Does anyone know of any evidence from the US / Canada?


It is good to hear they actually recognize the overtreatment of PTC. So they werent hesitant to take out only a lobe? Do you live in the USA? Where are you getting treated? I am looking for a surgeon/endo that supports this and cant seem to find one.


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## 49countrygirl (Jan 21, 2013)

Hi, I read your post about your doctor's watch and wait approach...monitoring your thyroid nodules with ultrasounds every six months. That's what I am going through now with one doctor, and it's been over two years. I recently went to an endo for another opinion and she told me that based on the findings that she felt I should have a total tt, and that the nodules have a 30% chance of being cancerous. That got my attention. My other doctor had told me that I had a 5% chance. Your post really helped me. I wish you the best!


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## Andros (Aug 26, 2009)

ETaylor1015 said:


> Thank you for sharing your story. I have really pushed for only one lobe out but no surgeon will do this. They are all treating to todays current guideline of a TT. They say that papillary is not typically contained to one nodule and it is microscopically throughout the whole thyroid. You bring up a great point though, I think I should just take out the known cancer and take a "wait and see" approach on the other half of my thyroid. In my mind if it recurs over the next few years that is at least more years I have of part of my natural thyroid functioning. This is such a slow growing think I am not going to wake up one day with a massive nodule. So what is the mayo clinic doing for you at this point? I heard that the Mayo clinic is one facility that is more conservative and I have read some articles from them that raise this question of it being overtreated. My endo even said they are starting to take out only a lobe once again. I have an appointment with the Mayo in the Jacksonville for a final opinion next week. Hopefully they will tell me something differently! What have been your main problems with the medications over the past years? How old are you and how big was initial papillary tumor?


If you are female, a bigger concern would be the papillary cancer metathisizing to the mammaries.

Do your research...........................


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## teri2280 (Feb 7, 2012)

I had a TT last March, RAI in June followed by a body scan, and just did another body scan in December. In some aspects I wish Id never had the dang thing out in the first place (the incredible stupidness I deal with from my endo). However, even though my numbers were "normal" before TT, I feel so much better. (I do believe I was on the hypo side of normal.) I honestly think that once I can ditch the endo and just have my pcp handle my replacement, I'll come to actually love every minute of it. (In the process of distancing myself from my endo now - my pcp will SOON be taking over my replacement, and just keeping the endo for the cancer stuff.)


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## ETaylor1015 (Jan 4, 2013)

Well in spite of my concerns on the overtreatment of papillary cancer, I went ahead and had my TT on friday and all went well. There was no suprises from what the surgeon saw..waiting for the final pathology report. Will you you posted.


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## ETaylor1015 (Jan 4, 2013)

Well in spite of my concerns on the overtreatment of papillary cancer, I went ahead and had my TT on friday and all went well. There was no suprises from what the surgeon saw..waiting for the final pathology report. Will keep you posted.


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## Octavia (Aug 1, 2011)

Good to hear from you. How did the surgery go?


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## ETaylor1015 (Jan 4, 2013)

Surgery went great, thanks for asking! No pain at all and I feel just about normal right now. Surgeon said everything looked good and didnt suspect any lymph node involvement. Now begins the journey of life without a thyroid! They started me on 137 mg of synthroid. Looking for insight on synthetic vs natural thyroid.


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## ETaylor1015 (Jan 4, 2013)

Well my story has now come full circle and I am very glad I had the TT. I got my pathology report and it turns out it the cancer was in two local lymphnodes and I had a aggressive variant of PTC called Tall Cell. It is cases like mine that they don't like to take a watch and wait approach, they truely don't know what they will find until they get in there. The good news is the cancer was only .8mm so they suspect it was caught early. Had I waited to do the surgery it could have been much worse. I will now get the RI treatment in one month (75mg) and hopefully close this chapter of my life. So to answer my own question, I dont reccommend the watch and wait approach. Thyroid cancer is very curable only if you treat it! Thanks God I listened to the doctors.


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## Octavia (Aug 1, 2011)

Good for you!!!!

Was your cancer .8mm or .8cm (8mm)? Just curious.

I am SSSOOOOOOO glad you opted against the watch and wait approach.


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## ETaylor1015 (Jan 4, 2013)

It was .8 cm


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## Kacot (Feb 8, 2013)

Thank you for this thread! I have struggled with the same thoughts for the past week since my diagnosis.


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## kidsabc (Feb 20, 2013)

Hi. Just wanted to add a thought... I am three days post op for a partial TT performed at MD Anderson by dr clayman (head of dept). They went to great depths to talk me into a partial versus a total. I was very surprised by this as all I've heard is getting a full and was expecting that treatment. They spent two hours discussing the pros of a partial for a small 9 mm no lymph node involved papillary. I had the partial but still worry if this was the best decision. But for those of you who are seeking a more conservative approach, I thought I would post this info


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