Am I the only person considering not doing TT

I have recently been diagnosed with papillary thyroid cancer and am seriously considering active surveillance rather than TT. A recent study from the Mayo Clinic discussed the over diagnosis and over treatment of low risk thyroid cancers. It basically stated in the group that did not received treatment survival rate was 97% and in the group that did treat the survival rate was 99%. I don't want to start an argument, just really curious if anyone here has decided to monitor for changes rather than TT. I have to admit reading all of the horror stories of life afterwards is pretty depressing. Are there people out there that have had positive experiences as well? I feel so good most of the time that I don't want to go through something that may not be absolutely necessary.

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Very interting thought. Do you have a link to an article?

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A study on active surveillance is being presented at the ATA meeting next week by researchers at Memorial Sloan Kettering:

Short Call Poster 8
Thyroid Cancer Thursday Poster Clinical
PROPERLY SELECTED PATIENTS WITH PAPILLARY
THYROID CANCER READILY ACCEPT ACTIVE
SURVEILLANCE WHEN OFFERED AS A STANDARD OF CARE
ALTERNATIVE TO IMMEDIATE SURGERY
M.D. Pace,, J.A. Fagin, , A. Bach, , L. Boucai, , G. Minkowitz, ,L.G. Morris, , R.J. Wong, , R.M. Tuttle


The document is at: http://online.liebertpub.com/doi/pdfplus/10.1089/thy.2013.2310.sc

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No your not the only one that has considered it. When I was diagnosed my nodule was 4.3 cm I was told the usual fluff about the majority of nodules are benign etc., so opted to just have the one lope removed so there would be enough of my thyroid left to where I would not need to be on medication for the rest of my life. Previously I had a FNA and the result came back inconclusive, so when they removed the lope it was sent to the pathologist. It came back being cancerous with papillary, follicular and hurthle cell, so the next day I went back into surgery and they removed the rest of my thyroid.

I mention the above because you need to be flexible in adjusting to your health needs. It is a personal choice for everyone, but for me I prefer to be proactive and do what I need to do to survive with quality of life (yeah some days I feel crappy, but that happens when you have the flu also). Versus burying my head in the sand thinking "oh I feel good so everything must be okay" (sounds like what smokers do right up to the point they are not okay). I say this because you know you have cancer (I didn't at first), so do you deal with it now or wait in hope that it doesn't progress, only you can make that decision.

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I think these choices are very individualized. In my opinion, it depends very much on tumor size and FNA results. If your FNA is conclusive for Papillary and if your tumor is smaller than 1 cm, then watchful waiting would be an option. I was actually mis-diagnosed for three years and by the time they realized (switched doctors), the tumor was 3.4 cm and had spread to my lymph nodes. I had a recurrence that same year (grew a tumor while prepping for RAI due to my TSH going sky high - no Thyrogen back then). Then I had a recurrence last fall and treated that with ethanol ablation.
By definition, these sites will attract people who struggle. You'll find newly diagnosed reaching out. Then this also serves as a great forum for people who have other issues they need to tackle. The support here is wonderful. However, there is a large group of ThyCa patients out there, particularly with well-differentiated papillary who just simply do very well. They do surgery, they do the LID, they get their RAI, they take their meds and life goes on. Others have challenges. Either way is fine - each has their own journey and their own story. I've had many challenges, yet my life is very fulfilling and I am very active.
So, watchful waiting is an option...that should include starting with a "neck-mapping" ultrasound that covers the entire neck to see if there are any suspicious lymph nodes and to document tumor size. Depending on the findings, that might help you decide what to do next.
Best of luck to you in whatever you do. Reach out any time for support...I've been at this "game" for 17+ years now!
dj

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http://www.mayoclinic.org/news2013-rst/7654.html

Thank you for the responses, experience, and insight. I should have given a little more of my background. I have a main nodule that is 1.8cm neck mapping has been done and lymph nodes look fine. Still of course reccomended for surgery. I just feel like the after effects of t his decision need to be weighed and I am gathering as much information as possible. I am not against it completely, its just difficult to read new studies and information that point in a completely opposite direction.

I realized the way that asking for good stories of life after TT may have come across insensative to those that are going through a lot and life isn't just great after TT. I apologize for not being more sensitive to each persons individual experience. I would actually like to hear from everyone's experiences and opinions.

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Only you can decide, and you probably can find doctors who would go along with active surveillance or lobectomy if you did your homework. Some people are inherently very conservative and would not opt for active surveillance unless it were to become the standard of care for certain types of nodules. Others are more willing to consider more recent research and pursue less aggressive options. That's how medicine moves forward and paradigms change.

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As others have said it will be your choice. But you should have an informed choice and not one driven by fear. Find out your pathology of your cancer, the risks, the aggressiveness - because even one confined to the thyroid with pathology that makes it more aggressive has a higher risk of spread than others. Take that into account, along with your age, and the statistics. Good luck.

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I only wish I had known about other types of treatments before my TT. I would likely have waited. Although I did have "non-goitrous" tissue growth around my esophagus, parathyroid, and larynx that had to be removed.
Silverem, I hope that whichever treatment you decide on goes well.

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It has been tricky to get back to 'normal' life after a TT, but I don't regret having it done.

For me, I was too scared to even consider watching and waiting. It's still cancer...whether they tell me it's aggressive or not.

Please talk to your doctor about whether yours may become more aggressive if left untreated or become harder to treat? If you wait, there is a chance it could spread anywhere (at any time), and discuss what may change as far as treatments as your age will increase, other health concerns may arise....

Even if the cancer stays contained within your thyroid, how will it effect your thyroid function over time?

As everyone has said, every person's circumstances are unique so every choice is an individual one. Mine was made because I have two babies and wanted to do the more conventional approach, especially since mine had spread to the muscle (so I didn't have many other choices)

Best wishes with your decision!!

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You are well informed and are working with a great facility (Mayo). As others have said, this is your choice and we support you in whatever you decide to do.
Be well,
dj

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As others have said, it is an individual choice. You were looking for someone who had a good outcome & I would say I had a great outcome. I had the TT, LID, RAI in 2011, I had to have a second surgery in early 2012 for nodes that were missed, but once I got my TSH levels where they should be I was fine. On the second surgery, some of the nodes came up with tall cell characteristics so I was glad those bad boys were out of there. On this message board (as someone else said) there are generally newly diagnosed and those that had less than ideal outcomes, you have to remember that thousands of people are diagnosed with thyca every year, the ones with good outcomes go on with their lives. I have a great deal of sympathy for those who continue to struggle, but I believe that they are the minority if thyca patients. Good luck with whatever you decide to do.

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I just wanted to echo Daria's thoughts.

I'm two years post TT and RAI and am doing fantastic. Was there an adjustment period? Sure. But now that the diseaesed gland is gone, I'm feeling better than ever.

Also, just as a FYI, I did have lymph node mapping done pre-op and was given the all clear. During surgery, my doctor made the call to do a central neck dissection and cancer was found in three nodes. So, there are limits to imaging (said only as information, not to scare etc).

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It certainly depends first and foremost on your actual involvement. I was offered surveillance instead if RAI. Thought long and hard. Surveillance meant preparing every few months for scan. I really wanted to get this behind me and move on and didn't want my life consumed with all of this if I didn't have to. So, for me, I opted for the RAI at a low dose. For me it worked and I'm "free" for a year now and will then be followed by a Thyrogen induced tsh and lymph node mapping. Good luck with whatever you decide.

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My cancer was showing on one side of the thyroid and on 2 parathyroids. The surgeon told me he would remove the half as half a thyroid is better than none. When it came back with 2 separate areas and spreading,, he told me he had to remove the other half.

I had the first half removed July 5, 2012 and the second removed July 21, 2012. The surgeon said it would be best since I wasn't healed yet.

I wish I had done my research and also find this site and I would never had let him remove the other half. I would have just had follow ups and keep an eye on it.

There was NO cancer in the other half.

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Everyone struggles no matter what they decide. I had a huge goiter that I lived with for several years under the 'wait and watch' type approach. I had many FNA's - all results were benign. I had imaging out the wazoo. Yep - there were nodules. My new endo noted my sky high antibodies. An iodine uptake study revealed many (16) nodules that were 'cold' so I was told not to be too surprised if they were cancerous. Still that was not a diagnosis.

Ultimately I was tired of watching my neck grow and opted for TT. Only after TT did I learn that I had a papillary tumor - zero spread. I still had RAI. Going hypo was the worst I ever felt. Losing my voice, then sounding like Minnie Mouse was a trial that lasted about 3 months. I am 10 months out from the TT and 6 months out from RAI and body scan.

I feel blessed. It has changed my life. I am more real now. I take more time with my son and less time with work. I do not suffer idiocy from my Ex and that has helped all around.

I could not tell anyone that having a TT is a cake walk. If cancer is found the follow up treatments make you feel worse for quite a while. I can just say that my voice is fine now. I have energy now. I feel like a living, breathing viable human. My only real complaint now is hot flashes but I had those pre-TT. All told, I consider my outcome to be excellent.

The problem most of us have is that the data only comes after the fact so making your choice is as much faith as not. Whatever you choose to do just know that you are not alone with this.

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I understand how you feel. I have asked for in[put and only got a few responses.
I thought if I had papillary cancer in one lobe, then leave the other half, so I can have a functioning'
thyroid. I has asked should I do half or whole. I am 63, recently completed radiation for
my second bout of ovarian cancer. I am reading the awful stories about people who have had their entire thyroid removed
and are still having problems. I was hoping to get more support here.
Good luck with your decision. I know the choice is yours.

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I has my entire thyroid removed . Cancer was only in nodule and some nearby lymph nodes. I am glad it was all removed personally. Done. Even if you retain part of your thyroid, you will still require thyroid meds and the possibility of another node growing is always there. Why have to go back for a second round?
I have no horror stories about getting the thyroid meds. Has been smooth sailing. Also, didn't go hypo before RAI. Stayed on my thyroid meds, had two Thyrogen shots followed by RAI. Worked great!! Going hypo was suggested - I refused saying quality of life is important.
There are a lot of success stories out there along with the bad ones....

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Linda, most people are inherently conservative when they hear the word "cancer", and so are most doctors. My advice to anyone who wants to avoid TT either through watchful waiting or lobectomy is to go to one of the centers that is publishing research in these areas and get an opinion from them. You can find these doctors by doing a search on google scholar. Not everyone is going to be a good candidate for these approaches, but some people will be. Its all a matter of finding the right doctors. Patients who appropriately opt for these approaches under good medical supervision are doing future thyroid cancer patients a favor, as this is how medicine moves forward.

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If I hadn't had Hashimoto's and knew my thyroid was on its way out anyhow I would've strongly considered keeping my thyroid and keeping a watch on it. I feel like I've done well after my TT, but I'm not going to sugar coat anything. I find being tied to a pill daily to be a real pain. We just briefly lost our insurance and I worried about how much my medication costs. My thyroid was very inflamed so I had some damage to both my parathyroids and my vocal chords. Another pill everyday.

It would've been great if I could've avoided all of that and the painful surgery and recovery time. I worry about the long term side effects of synthetic hormone and some of the studies about how it effects the heart. I think I could've left my thyroid in and monitored it, but It would've been very difficult for my husband who lost both of his parents to cancer. Good luck with your decision. I'm glad you have doctors who are progressive enough to consider which options will be best for you. Michelle

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I am also amazed at all the problems posted on this board about adjustment to thyroid hormone and not feeling well after TT. I personally have not had any problem on that score, but have to conclude that it must be a real phenomenon.

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