# Furious with Endo...advice please?



## Mrsatteberry (Aug 30, 2010)

Hello all! After 18 months of thyroid "issues" including a "benign" biopsy Nov 2010, partial thyroidectomy May 2011, cancer diagnosis June 2011, and completion thyroidectomy July 2011, my endo tells me today, "well, I'm not even sure you have or had cancer...I'm not saying the doctor at Mayo Clinic was wrong in diagnosing you with cancer, but I don't know myself that you even had cancer." Ummm...WHAT???

This was during my visit today to determine whether or not I need a full-body scan and possibly the RAI after. Endo told me, AFTER being on Cytomel for 4 weeks and completely miserable, that I can either stop now and get back on Synthroid and "on with your life," or I can go off Cytomel today, get the scan in 2 weeks, and possibly need RAI depending on the scan results.

Might I add that NO discussion was had about whether or not I need to go on a LID diet before the scan...even though the possible RAI will be 1-2 days after the scan. Uhhh...is it just me or should I be freaking out on my endo for his ignorance? I plan on calling them in the morning, as well as the hospital who is doing the scan and possible RAI, but I'm still absolutely furious with my endo for not letting me make a fully informed decision. He just kept saying it was "up to" me...well, uh...you're the doc!


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## Octavia (Aug 1, 2011)

I responded to your other thread...these docs really don't have their act together. Ugh!

What could possibly be so unclear about your results? They either saw cancer or they didn't. So, which is it?

Was your surgery done at Mayo, or was your tissue sent there for some other reason?

The sequence of scan, then RAI, seems backward based on my experience, but I'm only a sample of one. Plus, there's the low-iodine diet, and stopping whatever thyroid hormone replacement you're on. Are there any radiation oncologists in your area that specialize in thyroid cancer? They'll know what to do and when.

In the meantime, here's a link to some good information on the RAI...

http://www.thyroid.org/patients/patient_brochures/radioactive_iodine.html


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## Mrsatteberry (Aug 30, 2010)

Octavia said:


> I responded to your other thread...these docs really don't have their act together. Ugh!
> 
> What could possibly be so unclear about your results? They either saw cancer or they didn't. So, which is it?
> 
> ...


Thanks, Octavia. I don't know what my endo's deal is with it all. I am not disputing the cancer, the surgeon is not disputing the cancer, the Mayo Clinic (where the sample was sent for consultation/confirmation of cancer) does not dispute it is cancer. I don't get it....I don't know why he would even think that was a logical or appropriate thing to say.

I think he is ordering the scan first because I was hesitant to get the RAI without knowing for sure I needed it. My nodule was 1.8 cm and completely encapsulated, meaning it hadn't started to spread. However, since I have follicular variant papillary, I am looking at one of them that spreads and the other doesn't. The way the ENT surgeon explained, if I have any "floating" tissue in there, it can spread to other parts of my body. I have an online thyca friend who just found out she has thyroid cancer in her stomach. She has to get another RAI dose before it turns into thyroid cancer AND stomach cancer.

To complicate matters and my decision, I had gotten a 2nd opinion from an awesome cancer center. The doc there says the American Thyroid Association has changed it's guidelines and are now only recommending RAI for nodules over 2 cm. So I'm just under that and that's why they keep saying I'm in a "grey area" and it's up to me what to do. Well I'm not a doctor, but it seems I have more sense than they do. I have never been so confused and unsure of what to do in my life.  Thanks for the link...going to check it out now.


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## desrtbloom (May 23, 2010)

Good grief! If the pathology report said you had cancer, then you had cancer. You now know why they call it the "practice" of medicine. They are practicing on us! Ugh! Some of these doctor's are just pathetic. I'm so sorry you are going through all of this.

:hugs:


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## webster2 (May 19, 2011)

I am so sorry about your doctor. Mine was follicular variant papillary too. I am looking at a scan in the future also. Most likely no RAI. A scan was done at the time of surgery but it was decided to do another in the future, no date set. Going off the levo scares me. Sorry too much of the decision process is left up to you, that doesn't seem very helpful. Best wishes to you for better health and with the decision making process.


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## Octavia (Aug 1, 2011)

webster2 said:


> Sorry too much of the decision process is left up to you, that doesn't seem very helpful. Best wishes to you for better health and with the decision making process.


I agree...they seem to be leaving the decision up to you, without sharing all of the finer details that would help you make the most informed decision possible.

I guess in a way, I was lucky... my plan of action was pretty much laid out for me, and nothing appeared to be optional. Perhaps it was because of the size of my tumor (3.2 cm), I don't know.

I hear what you are saying about your cancer being totally encapsulated, but at the same time, my understanding is that they want to do the RAI to kill off ANY remaining thyroid cells so they don't turn cancerous in the future. Then again, what you're saying about size also makes sense.

For me, the RAI seemed like a good "safety measure."


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## Andros (Aug 26, 2009)

Mrsatteberry said:


> Hello all! After 18 months of thyroid "issues" including a "benign" biopsy Nov 2010, partial thyroidectomy May 2011, cancer diagnosis June 2011, and completion thyroidectomy July 2011, my endo tells me today, "well, I'm not even sure you have or had cancer...I'm not saying the doctor at Mayo Clinic was wrong in diagnosing you with cancer, but I don't know myself that you even had cancer." Ummm...WHAT???
> 
> This was during my visit today to determine whether or not I need a full-body scan and possibly the RAI after. Endo told me, AFTER being on Cytomel for 4 weeks and completely miserable, that I can either stop now and get back on Synthroid and "on with your life," or I can go off Cytomel today, get the scan in 2 weeks, and possibly need RAI depending on the scan results.
> 
> Might I add that NO discussion was had about whether or not I need to go on a LID diet before the scan...even though the possible RAI will be 1-2 days after the scan. Uhhh...is it just me or should I be freaking out on my endo for his ignorance? I plan on calling them in the morning, as well as the hospital who is doing the scan and possible RAI, but I'm still absolutely furious with my endo for not letting me make a fully informed decision. He just kept saying it was "up to" me...well, uh...you're the doc!


Where is your pathology report from your thyroidectomies? In your possession? What do they say?

How much Cytomel are you on? You do need to have the RAI and I am thinking you need a better doctor than this one. Do you have a good GP? Anybody can do this for you as long as they are medically qualified and have a desire to help you.

You have been through a lot. 2 surgeries back to back. It will take about 18 months for total kick-butt recovery.

You are in my prayers.


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## Andros (Aug 26, 2009)

Mrsatteberry said:


> Thanks, Octavia. I don't know what my endo's deal is with it all. I am not disputing the cancer, the surgeon is not disputing the cancer, the Mayo Clinic (where the sample was sent for consultation/confirmation of cancer) does not dispute it is cancer. I don't get it....I don't know why he would even think that was a logical or appropriate thing to say.
> 
> I think he is ordering the scan first because I was hesitant to get the RAI without knowing for sure I needed it. My nodule was 1.8 cm and completely encapsulated, meaning it hadn't started to spread. However, since I have follicular variant papillary, I am looking at one of them that spreads and the other doesn't. The way the ENT surgeon explained, if I have any "floating" tissue in there, it can spread to other parts of my body. I have an online thyca friend who just found out she has thyroid cancer in her stomach. She has to get another RAI dose before it turns into thyroid cancer AND stomach cancer.
> 
> To complicate matters and my decision, I had gotten a 2nd opinion from an awesome cancer center. The doc there says the American Thyroid Association has changed it's guidelines and are now only recommending RAI for nodules over 2 cm. So I'm just under that and that's why they keep saying I'm in a "grey area" and it's up to me what to do. Well I'm not a doctor, but it seems I have more sense than they do. I have never been so confused and unsure of what to do in my life.  Thanks for the link...going to check it out now.


That is 100% correct; thyroid tissue acts just like endometriosis and can attach it's self anywhere in your body. Especially the cancerous kind. I sure would listen to the surgeon.

RAI is no big deal; at least not to me as I had 3 of them.

They change guidelines to suit insurance companies, I sometimes think.

You will make the right decision for you and your circumstances, I am sure. And we all will support you no matter what that decision is.


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