Active Surveillance

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Active Surveillance

by Swifty on Sat Apr 20, 2019 02:02 AM

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Had my appointment yesterday with an Endo Surgeon at NYU Langone to discuss my 1cm nodule with Papillary Cancer. (and Hashimoto's) I liked him very much. His opinion was that I fit in a category of people who could do active surveillance, have ultrasounds periodically and see if it changes. It may have been there for a long time, no way to know. It is a slow growing type and is situated in a "good" location so he felt no urgency. All the lymph nodes in my neck look fine.
The other option is to remove the thyroid, take meds and be done with it. He said if I am a personality type that will worry every day then maybe just have it out. If I can go on with my life and not obsess then waiting is reasonable. He also said there is no way to know if removing it will help my symptoms like digestive issues, burning mouth, etc.
On the downside, he cannot guarantee that after removal and pathology there would not be something more, but he sees nothing of urgency at this point. He had more to say but that was the gist of it. I am leaning toward the watch and wait because I am fond of keeping my thyroid if possible. As I was looking at clinical trials for surveillance, I found this article and thought it was very interesting.
Just looking for opinions or experiences that may be similar.
I thought this article was very interesting.

RE: Active Surveillance

by ToddlerFather on Sat Apr 20, 2019 02:54 AM

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Currently there is no known conditions that would make papillary cancers not move forward at some point in time; there is for follicular cancers, and it's called NIFTP. 

But yours could be; FNA's are not 100% precise. Mine said "Follicular", and in the end it was Follicular-Variant Papillary. 

Some years ago, though, even clear cases of what is currently known as NIFTP ended up in surgical removal. So even if yours is papillary, it might be within a scenario that will make it not become a life threat. 

As for removing not resolving everything, I'm living proof of it: I had my thyroid removed and I still have to deal with non-RAI-avid metastases at the lungs. 

So if a surgeon with knowledge and access to you and your image exams is suggesting active surveillance, I would go in that direction. 

RE: Active Surveillance

by Swifty on Sat Apr 20, 2019 12:49 PM

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I was wondering if the pathology was correct because I have read of many that are not. They did get an abundance of cells, so I was hopeful.

That said I should make clear that he said I was "candidate" for AS, but, when I asked him the classic question "what would you tell your Mother to do?" he laughed and said that if it was his he would remove it, but that is because he is a surgeon and that is what he does. He went on to say if it was his wife, she would say leave it and watch. His comment about it being possible to find out later (after removal) with pathology that there was something worse involved is adding to the difficult decision.

I found it interesting in the attached article the info about the speed of growth in set, and once that is determined the speed seems to maintain, which will give me anide of how quickly it will progress. Of course that is different from spreading. I was pleased with the clear lymph nodes although I wasn't clear how he could tell. He does 325+ removals a year and is the head of Endo Surgery at NY Langone so I presume he has a good eye.

I am sorry about your metastases because we all know that is a scenario no one wants. Are you having success with treatment of the lungs?

I gather you are much younger than me, as a "toddler father".

I was planning to try the AS till at least the 3 month mark. I wuld like the hAshi's to go away, which he said would happen but I don't understand that. He gave me a referral to a colleague Endocronologist for the AS so I can ask that Doc more questions I suppose.

RE: Active Surveillance

by ToddlerFather on Sat Apr 20, 2019 02:54 PM

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I'm almost 50, above the line of 45+ where usual risk classifications are drawn apart... 

... the treatment with LDN (Low Dose Naltrexone) is succeding in make them into remission. Which is good, since there is no recommended conventional treatment at this point. I've also added alpha-lipoic acid to the mix, but so far it haven't changed the trend. Next step, whether ALA works or not, is possibly adding DCA (Sodium Dichloroacetate).

I've also been monitoring clinical trials; one of them failed, and I hope the others evolve into possible treatment vectors. 

RE: Active Surveillance

by butterfly501 on Mon Apr 22, 2019 10:55 AM

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On Apr 20, 2019 2:02 AM Swifty wrote:

Had my appointment yesterday with an Endo Surgeon at NYU Langone to discuss my 1cm nodule with Papillary Cancer. (and Hashimoto's) I liked him very much. His opinion was that I fit in a category of people who could do active surveillance, have ultrasounds periodically and see if it changes. It may have been there for a long time, no way to know. It is a slow growing type and is situated in a "good" location so he felt no urgency. All the lymph nodes in my neck look fine.
The other option is to remove the thyroid, take meds and be done with it. He said if I am a personality type that will worry every day then maybe just have it out. If I can go on with my life and not obsess then waiting is reasonable. He also said there is no way to know if removing it will help my symptoms like digestive issues, burning mouth, etc.
On the downside, he cannot guarantee that after removal and pathology there would not be something more, but he sees nothing of urgency at this point. He had more to say but that was the gist of it. I am leaning toward the watch and wait because I am fond of keeping my thyroid if possible. As I was looking at clinical trials for surveillance, I found this article and thought it was very interesting.
Just looking for opinions or experiences that may be similar.
I thought this article was very interesting.

1 cm nodule by ultrasound?  and papillary thyroid cancer by FNA? 

Get it removed.  Cancer doesn't just go away.

What's there to watch for if they've already decided it's cancer.

RE: Active Surveillance

by butterfly501 on Mon Apr 22, 2019 11:02 AM

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On Apr 20, 2019 12:49 PM Swifty wrote:

I was wondering if the pathology was correct because I have read of many that are not. They did get an abundance of cells, so I was hopeful.

That said I should make clear that he said I was "candidate" for AS, but, when I asked him the classic question "what would you tell your Mother to do?" he laughed and said that if it was his he would remove it, but that is because he is a surgeon and that is what he does. He went on to say if it was his wife, she would say leave it and watch. His comment about it being possible to find out later (after removal) with pathology that there was something worse involved is adding to the difficult decision.

I found it interesting in the attached article the info about the speed of growth in set, and once that is determined the speed seems to maintain, which will give me anide of how quickly it will progress. Of course that is different from spreading. I was pleased with the clear lymph nodes although I wasn't clear how he could tell. He does 325+ removals a year and is the head of Endo Surgery at NY Langone so I presume he has a good eye.

I am sorry about your metastases because we all know that is a scenario no one wants. Are you having success with treatment of the lungs?

I gather you are much younger than me, as a "toddler father".

I was planning to try the AS till at least the 3 month mark. I wuld like the hAshi's to go away, which he said would happen but I don't understand that. He gave me a referral to a colleague Endocronologist for the AS so I can ask that Doc more questions I suppose.

hashimoto thyroiditis is an autoimmunie disease....it will not go away....same as the cancer you have.

Pleae find a well versed endo to help you after thyroid removal to monitor your TG in the face of having TgAb, since you have hashis.

you will not be a routine case to follow.

RE: Active Surveillance

by Swifty on Mon Apr 22, 2019 11:46 AM

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Good morning and thanks for your inut. I thought the article I attached was valid in that some people have small cancers that never become a problem. Much like prostate cancer in men. I am nearing 62 and he said it may have been there a long time and it may just sit and do nothing. BUT we have no way of knowing. This Doctor is the head of Endo Surgery at NYU Langone so I figure he knows from experience. In fairness he said if it was his he would remove it, but if he asked his wife she would do the opposite. When I see all the trouble people have after thyroidectomy it seemed like waiting 3 months to see if it has changed at all was reasonable. Of course I do not want it to spread and regret it. That is why I am considering all of it.He told me if I remove the thyroid the Hashi's will go away as well and that currently it could be harming other parts of my body so that is a valid reason as well. At one point I had almost been in remission and then a stressful event shot the numbers up again. I had Sarcoidosis in my 30's and it is in remission now, so I feel it is possible.
Active surveillance for small papillary cancers is well studied in other places like Japan and is slow to become common here, but is growing.
Can you remind me what your case was and how it unfolded if you are willing?

RE: Active Surveillance

by Swifty on Mon Apr 22, 2019 11:48 AM

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PS: Check out this esecond article from the Thyroid Association:https://www.thyroid.org/patient-thyroid-information/ct-for-p

RE: Active Surveillance

by Swifty on Mon Apr 22, 2019 01:29 PM

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Another among many articles showing active surveillance being a reasonable option. I understand their are risks, but having no thyroid has its own set of troubles. I am subclinical for Hypothyroidism and as mentioned in the article I have high calcification in this nodule. I have not ruled out surgery but I think 3 months is not a difference one way or another. If it changes at the 3 motnh follow-up this will be a different story.

This seems to be a new and growing approach to small papillary cancers. 


http://aot.amegroups.com/article/view/4564/5504

RE: Active Surveillance

by ToddlerFather on Mon Apr 22, 2019 06:01 PM

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Some videos from WTC 2017 might add to that thought process:

https://www.youtube.com/watch?v=xt296C1ShBU

https://www.youtube.com/watch?v=JnnQyrkphik

https://www.youtube.com/watch?v=QaVSCeOLLzk

https://www.youtube.com/watch?v=3L8OveOjADc

WTC 2019 is coming in a couple of months, so updated information will soon be available. 

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