# Second surgery recommended



## globus007 (May 29, 2015)

Hi all,

This is my first thread and I need bunch of objective and unbiased opinions (not just "if doctor recommended, do it.")

Here's my story:

- in 1997, when I was 28, my mother noticed a bump on my neck. I went to endo and she told me it's a nodule on the left side of the neck and it needs to be removed. I went to the surgeon and they removed this part of the thyroid. End of story. I don't remember much detail and have no records left as it happened overseas.

- Fast forward 18 years, I never bothered checking anything except every year I told my docs at annual check ups that I had the thyroid issue. Sometimes they tested my thyroglobulin but I never had any issues and never did any ultrasound.

- This time around, a new doc sent me to do ultrasound. They found a nodule on the right side, measuring 1.8x1.7x1.1cm. I did FNA and they found atypia and sent it further for molecular analysis. It came back with some generic PAX8 chromosome 3p25 and 2q13 translocation and risk of cancer. My doc explained that I need to do the surgery and they will most likely removed the ENTIRE THYROID. That means I will have to take supplements for the rest of my life.

Here are my thoughts:

1. If I had a similar issue 18 years ago and they removed only part of my left thyroid gland, why do they have to remove it if the rest of it functions well.

2. For the above reason, why do they have to remove my entire right gland as well and not just the nodule.

3. Why do I have to rush into surgery if for 18 years I barely notice anything and they don't even suggest monitoring the condition for a while and see if the nodule will grow.

This really bugs me. Is that all about money or they really care about my well being? What is the best trade-off?

My intuition tells me that I should wait and see. It's never late to do the surgery but in 10-20 years the medicine can take a giant progress and this can be cured in my other, more efficient way.


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## joplin1975 (Jul 21, 2011)

Er, I agree with your doctor. It's too bad you don't have other records of your original surgery. Did they mention thyroid cancer at that time? It would be the only logical reason they tested your thyroglobulin.

1) You can have thyroid cancer and a normally functioning thyroid or a lobe of a thyroid. What they are telling you now is that it is more likely than not that you do indeed have thyroid cancer. Thyroid cancer is very easily treatable and has a good prognosis, but only when caught early. You've essentially been untreated and unmonitored for 18 years. That's a LOT of time for cancer to grow. Your doctor is treating you well and wanting to get the diseases tissue out ASAP to increase your chances of survival and minimize risk.

2) They cannot just remove the nodule. Thyroid surgery just works out that way. If you have a nodule that needs to be removed, they have to take the lobe of the thyroid, since nodules aren't discrete structures, but actually part of the thyroid.

3) See my answer to #1. Your other doctors mistreated you and that could cause issues.

I would strongly disagree that "it's never too late to do the surgery."


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## globus007 (May 29, 2015)

"to get the diseases tissue out ASAP to increase your chances of survival and minimize risk."

Thank you. When you say "survival" and "risk", what exactly do you mean? Is the little nodule life-threatening and what is the risk in your opinion.


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## joplin1975 (Jul 21, 2011)

By risk, I mean complications from surgery. The more invasive the disease, the more invasive the surgery. The neck is a tricky area and -- forgive the expression -- the more they have to "dig around" to get the diseased tissue, the more likely your vital structures/organs are at risk.

Thyroid cancer is rarely life threatening, but that's usually because it is caught early and removed while it is localized. There are no chemo-type drugs that treat thyroid cancers and any drugs that are being developed to keep tumors stable are still in their infancy and not widely available. Post-surgical treatment is often radioactive iodine, which kills thyroid cells specifically. But once the cancer grows outside of the thyroid capsule, it begins to differentiate -- meaning it no longer looks or acts like thyroid tissue. So, radioactive iodine is not as effective. Once it is out of the thyroid capsule and neck area, it can more easily travel to your lungs, in particular. Once you have mets to your lungs, things get really complicated really quickly.

Its very, very rare to hear about metastatic thyroid cancer because, again, people who have thyroid cancer are generally monitored closely to prevent it from happening. With thyroid cancer, removal from its original site and close monitoring have proven to be very, very successful. In your case, you have decades of no or limited monitoring which, while rare, could be life threatening. I certainly respect you and the decisions you make about your body, but from my perspective, it would be terrible to deal with complications when the other option(s) are relatively minor medical procedures.


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## globus007 (May 29, 2015)

joplin1975 said:


> By risk, I mean complications from surgery. The more invasive the disease, the more invasive the surgery. The neck is a tricky area and -- forgive the expression -- the more they have to "dig around" to get the diseased tissue, the more likely your vital structures/organs are at risk.
> 
> Thyroid cancer is rarely life threatening, but that's usually because it is caught early and removed while it is localized. There are no chemo-type drugs that treat thyroid cancers and any drugs that are being developed to keep tumors stable are still in their infancy and not widely available. Post-surgical treatment is often radioactive iodine, which kills thyroid cells specifically. But once the cancer grows outside of the thyroid capsule, it begins to differentiate -- meaning it no longer looks or acts like thyroid tissue. So, radioactive iodine is not as effective. Once it is out of the thyroid capsule and neck area, it can more easily travel to your lungs, in particular. Once you have mets to your lungs, things get really complicated really quickly.
> 
> Its very, very rare to hear about metastatic thyroid cancer because, again, people who have thyroid cancer are generally monitored closely to prevent it from happening. With thyroid cancer, removal from its original site and close monitoring have proven to be very, very successful. In your case, you have decades of no or limited monitoring which, while rare, could be life threatening. I certainly respect you and the decisions you make about your body, but from my perspective, it would be terrible to deal with complications when the other option(s) are relatively minor medical procedures.


This is more clear now. Thanks again. How did your life change after the surgery? Is it a big nuisance to take the meds? I'm not used to any medications.


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## joplin1975 (Jul 21, 2011)

My life has significantly improved since surgery. Admittedly, I had undiagnosed Hashimoto's disease and antibodies related to Grave's AND cancer...so i was kinda a mess. Since surgery, I'm finally feeling stable and energetic. My skin and hair look good. My joints don't ache. I'm sleeping well. Most people tell me I'm looking and acting 10 years younger than I was three years ago before surgery.

I will say, in the interest of full disclosure, that it did take a while to find the right dose for me. For some others, it takes some experimentation with different types of medication. So the post-op adjustment process can be frustrating.

Taking the meds is no big deal for me. It's absolutely part of my routine now. I don't even really think about it.


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## Octavia (Aug 1, 2011)

globus007 said:


> This is more clear now. Thanks again. How did your life change after the surgery? Is it a big nuisance to take the meds? I'm not used to any medications.


I had my thyroid removed 4 years ago due to cancer. Is it a nuisance to take the meds? No, not at all. Honest. It takes about 30 seconds in the morning, then I wait 30-60 minutes to eat breakfast (this is critical so the drugs get fully digested/absorbed). That's it. It's that easy.


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## webster2 (May 19, 2011)

I had my thyroid removed in 2 surgeries 20 years apart. I don't know much about my first surgery either. I think patients were not given much information about their treatment until recently.

Listen to your doctor. Taking the medication is not really a problem; you just need to find what works for you.


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## globus007 (May 29, 2015)

Thank you all for the support. I've read about the possible risks and maybe considering second surgery.

I can't remember what is takes. I can only remember that I spent a few days in the hospital recovering. How was it for you? When can I go back home and to work after the surgery?


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## joplin1975 (Jul 21, 2011)

It depends a lot on your job.

I had an overnight stay. I only took pain meds because the nurses kinda really pushed it. I actually had no pain. I was out the next morning, in the hospital for a total of about 14 hours. I was told to take two weeks off of work (I have a physically easy desk job). My surgery was on a Monday but I was taking calls and answering emails at home by Wednesday. We re-roofed our house on day 11.


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## webster2 (May 19, 2011)

I was not quite up to roofing a house  but went camping and kayaking at 2 weeks out. I was 52 when I had the last surgery.


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## globus007 (May 29, 2015)

I need another opinion.

I've read a lot about thyroid cancer being over diagnosed over the past 3 decades due to advances in technology. Especially small thyroid cancer like papillary thyroid cancers.

There are studies done by Michael Tuttle, MD, Louise Davies, MD and Dr. Gilbert Welch among others. They all suggest that treating and removing these nodules can do more harm than good and many people live their entire lives without even knowing they have these benign nodules.

I just find it very hard to believe that I need an urgent surgery right now instead of maybe active monitoring.


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## joplin1975 (Jul 21, 2011)

Yes, there are lots of those studies are out there and Dr. Tuttle, in particular, is very good. The catch here is that "small thyroid cancers" are usually defined as under 1cm. Your new nodule is larger than that and therefore most doctors consider the watch and wait method to not apply.


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## globus007 (May 29, 2015)

I understand that it's larger but any tumor is supposed to grow (no?), although very slow and it should buy people some time if you know what I mean. One can't replace his/her thyroid gland but the science make have a cure in the coming years.

Dr Louise Davies study suggested that, "Many people who die from other causes are found to have thyroid cancer, "never knowing they had it while they were alive."

Dr Tuttle's quote: "I tell patients with small papillary cancers, 'we are not going to make a decision today about whether we are ever going to need surgery or not, but we are going to say that surgery is not necessary right now and that we have time to monitor with ultrasound. I also tell them, 'if I am wrong and if you are one of the few patients whose tumor grows in 6 months or a year, we are still going to be able to treat this just fine.'"


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## joplin1975 (Jul 21, 2011)

Yes, but sometimes they find tumor incidentally when they are, say, 4mm. That is considered different -- by the medical establishment -- than a 1cm+ tumor because the 1cm+ tumors a greater tendency to invade structures outside the thyroid capsule and you get the previously mentioned complications.

Look, if you want to wait, then wait! I really am supportive of that. I would advocate that you get connected with a really great doctor who knows his or her stuff and can monitor you closely. I would advocate that you do everything in your power to get all your medical records and that you track all lab results really, really closely. But if you want to wait, wait. Your body, your choices -- no questions!

I will say that, through a series of convoluted professional and personal associations, I have done some pro-bono fundraising work for The International Thyroid Oncology group. Dr. Tuttle was a founding member of the group (he has since rotated off). The group is focused on more challenging thyroid cancers (anaplastic and medullary, primarily), but in our group conference calls we, of course, have talked about me and my experience with thyroid cancer. Their thoughts -- which were offered very much in an informal setting -- was that we are decades away from a cure for "classic" thyroid cancers, mostly because we already have an effective way to treat the disease. Relative to other cancers, thyroid cancer gets minuscule amount of funding. Finding a cure for the most challenging thyroid cancers will be the priority and even that is quite a ways off, given the low level of funding. Finding a cure for papillary thyroid cancer won't, in my opinion, happen in my life time.


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## globus007 (May 29, 2015)

Thanks again.

I feel like the more I read about it, the more I get confused. I will just keep reading and pretend that I never noticed this nodule. In reality, I have no choice but to do some close monitoring, follow up scans and blood tests every 4-6 months or so. The risk is ther and I will accept it.


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