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mvonsprecken's Message Board Messages

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RE: My Journey with Thyroid Cancer

by mvonsprecken - November 20 at 1:48 PM

On Nov 20, 2018 7:36 AM butterfly501 wrote:

On Nov 19, 2018 7:02 PM mvonsprecken wrote:

On Nov 19, 2018 8:35 AM butterfly501 wrote:

I'm sorry, I'm unclear.  You had a 6 cm nodule removed that was confirmed thyroid cancer and doctors at Mayo said you needed no further treatment or completed thyroidectomy??? 

That is shocking and quite disturbing from such a highly regarded institution. A Mayo clinic MD was on the task force that compliled the most recent professional guidelines for thyroid cancer management. 

Color me shocked!

With that said, I would recommend taking at look at the professional guidelines, discussing them with your treating physician, and seeking a 2nd opinion on the current diagnosis.

Good luck!

I had been very confused as to what was going on. During surgery the pathologist said that what I had was classified as NIFTP. I guess that is something they used to call cancer but now they do not. MThe final pathology report showed mine had papillary cancer features. It was encapsulated and did not spread anywhere. Because of this, they said no other treatment was needed. When I had a follow up ultrasound a few days ago, the doctor said everything was great but did say there was a very small nodule on the right side that had slightly grown since my surgery. The dr said we would just watch it. After thinking a couple days, I messaged the doctor and said with my anxiety, I will worry about this and I just want it out. He thought I was way overly concerned and basically surgery for this would be aggressive. I insisted that I wanted it out so my surgery is scheduled for next month. Does that make a little more sense? I’m sure I am just as confused as you! :). Michelle

It really does not make any sense to me, how a center of excellence would first skip a gold standard FNA before thyroidectomy and second would recommend a lobectomy after finding a 6 cm confirmed papillary thyroid cancer. 

It's such a substandard of care, especially in relation to the professional guidelines (with an author from Mayo) I'm nothing short of floored.

You have a confirmed case of papillary thyroid cancer and they are going to leave a lobe?  How do they even plan to monitor you for cancer recurrence when you still have half a thyroid? 

I had much higher expectations for the Mayo clinic. 

I usually read experiences like yours from places that treat very few cases of thyroid cancer.  Not from a place on par with Sloan, UPenn, and Johns Hopkins.

In my opinion, you should be very concerned with the quality of care you've received thus far.

You made some very good points that I didn’t think of. If they would have done the fna, they would have known to take the whole thyroid and I wouldn’t be having another surgery next month. I understand that they didn’t remove the right lobe because they thought I had what they call NIFTP, and even though my cancer had not spread, I think they still should have recommended I have the other half removed. I felt like the doctor thought I was way out of line when requesting I have it removed anyway. I really appreciate your response and opinions. Thank you.

RE: My Journey with Thyroid Cancer

by mvonsprecken - November 19 at 7:06 PM

On Nov 19, 2018 9:23 AM ToddlerFather wrote:

Some comments:

- A family history of benign nodules doesn't add or subtract risk to one's diagnosis. 

- Dividing things into cancer/non-cancer is a simplification; in thyroid nodules, there are at least adenoma, NIFTP and tumor characterizations. 

- Having a pathology report that differs from the frozen section report made during surgery is quite common; happened to me also. 

- Going back to remove the other half is also a common path for thyroid cancer patients. Happened to me too. 

- Not taking out a thyroid with NIFTP is consistent with consensuns thinking in the field. 

The sequence I don't understand is why they decided to, after a pathology report saying it was PTC, to not take the whole thyroid out. Even before the new nodule appeared, I don't see why not doing it... 

When the remaining side is removed, the pathology of that side will be key to decide your next treatment steps: whether to do RAI or not, which goal to achieve with hormone replacement (just replace your body need of it or to go after a full TSH supression). 

Also, try getting a hold on the PFFE tumor cells so that, if down the road a genetic test is justified, you can do it. 

I insisted that I want the other side removed and they are doing it. The doctor said it is not necessary but I am not comfortable watching and waiting. The last thing I want is to go through surgery again but I need peace of mind. Thanks :)

RE: My Journey with Thyroid Cancer

by mvonsprecken - November 19 at 7:02 PM

On Nov 19, 2018 8:35 AM butterfly501 wrote:

I'm sorry, I'm unclear.  You had a 6 cm nodule removed that was confirmed thyroid cancer and doctors at Mayo said you needed no further treatment or completed thyroidectomy??? 

That is shocking and quite disturbing from such a highly regarded institution. A Mayo clinic MD was on the task force that compliled the most recent professional guidelines for thyroid cancer management. 

Color me shocked!

With that said, I would recommend taking at look at the professional guidelines, discussing them with your treating physician, and seeking a 2nd opinion on the current diagnosis.

Good luck!

I had been very confused as to what was going on. During surgery the pathologist said that what I had was classified as NIFTP. I guess that is something they used to call cancer but now they do not. MThe final pathology report showed mine had papillary cancer features. It was encapsulated and did not spread anywhere. Because of this, they said no other treatment was needed. When I had a follow up ultrasound a few days ago, the doctor said everything was great but did say there was a very small nodule on the right side that had slightly grown since my surgery. The dr said we would just watch it. After thinking a couple days, I messaged the doctor and said with my anxiety, I will worry about this and I just want it out. He thought I was way overly concerned and basically surgery for this would be aggressive. I insisted that I wanted it out so my surgery is scheduled for next month. Does that make a little more sense? I’m sure I am just as confused as you! :). Michelle

My Journey with Thyroid Cancer

by mvonsprecken - November 19 at 3:02 AM

I want to share my story with thyroid cancer with you. This is the first support site I have joined. I found out I had a 6CM nodule less than 4 months ago. I’ve been through a lot these last few months and I want to help others by offering my support and experiences. I wrote a blog post on my entire journey so far and will be adding to it very soon. I am having the remaining right side of my thyroid out on Dec 18th. I will try and add a link to my post. If it doesn’t work, I will copy and paste it for all of you to see. PLEASE let me know if you have any questions...I’d love to help! https://positiveplaceonline.wordpress.com/2018/11/16/my-jour
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