pre-diagnosis, what to expect

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pre-diagnosis, what to expect

by student2patient on Thu Jul 11, 2019 02:40 AM

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Hello,

I have annual imaging based on another condition. This year there was an incidental finding of a mass on my right thyroid. Follow-up ultrasound found masses on both right and left lobes, with one mass having irregular borders. I heard from my internist way before any report popped up on the portal, so we can add descriptions of "solid and fluid components," "predominate nodule" and I don't recall the rest, but it registered in my mind as "one mass controlling the growth of other masses."

I have read tons, and was pretty upset by what I was reading, everything from the LID to RAI.

I felt much better when I found Canada's version of the LID, including a searchable recipe booklet, which I will use as my "Can I eat this?" list. I will be working up on creating my own LID recipes in preparation for likely surgery and possible RAI (scoring of Stage I & II cancer seems to vary, and would likely not need RAI in Stage I).

http://www.thyca.org/download/document/231/Cookbook.pdf

I have a background in nuclear medicine, ending in 1991. I found my senior intership boring, and was concerned by the general sloppiness in handling radioactive substances, and never pursued it any further than it being my college minor.  I do not remember a specific incident, but the hospital's radiation safety officer said I should have my thyroid counted. His verbal recommendation was vetoed by two adjunct faculty from my school on site. That, and getting "heads' up" phone calls from Syncor that the NRC had visited, causing some isotopes to be temporarily rehomed, I found deeply disturbing behavior at this major East Coast medical institution.

My background is in the non-clincal realm. What happened to patients was never part of Radiology Rounds. Quick view of images, likely diagnosis, then next slide....

I have an initial appointment with an endocrinologist in a month. What is the general sequence of events from there? Time between the steps? It looks like once my thyroid is biopsied and diagnosed, my case gets kicked over to ENT. I can find no further local information from there. I am expecting full thyroidectomy, possible RAI based on educated inferences.

Thanks!

RE: pre-diagnosis, what to expect

by butterfly501 on Thu Jul 11, 2019 07:22 PM

Quote | Reply

On Jul 11, 2019 2:40 AM student2patient wrote:

Hello,

I have annual imaging based on another condition. This year there was an incidental finding of a mass on my right thyroid. Follow-up ultrasound found masses on both right and left lobes, with one mass having irregular borders. I heard from my internist way before any report popped up on the portal, so we can add descriptions of "solid and fluid components," "predominate nodule" and I don't recall the rest, but it registered in my mind as "one mass controlling the growth of other masses."

I have read tons, and was pretty upset by what I was reading, everything from the LID to RAI.

I felt much better when I found Canada's version of the LID, including a searchable recipe booklet, which I will use as my "Can I eat this?" list. I will be working up on creating my own LID recipes in preparation for likely surgery and possible RAI (scoring of Stage I & II cancer seems to vary, and would likely not need RAI in Stage I).

http://www.thyca.org/download/document/231/Cookbook.pdf "" target="_blank" rel="nofollow">http://www.thyca.org/download/document/231/Cookbook.pdf " target="_blank" rel="nofollow">http://www.thyca.org/download/document/231/Cookbook.pdf

I have a background in nuclear medicine, ending in 1991. I found my senior intership boring, and was concerned by the general sloppiness in handling radioactive substances, and never pursued it any further than it being my college minor.  I do not remember a specific incident, but the hospital's radiation safety officer said I should have my thyroid counted. His verbal recommendation was vetoed by two adjunct faculty from my school on site. That, and getting "heads' up" phone calls from Syncor that the NRC had visited, causing some isotopes to be temporarily rehomed, I found deeply disturbing behavior at this major East Coast medical institution.

My background is in the non-clincal realm. What happened to patients was never part of Radiology Rounds. Quick view of images, likely diagnosis, then next slide....

I have an initial appointment with an endocrinologist in a month. What is the general sequence of events from there? Time between the steps? It looks like once my thyroid is biopsied and diagnosed, my case gets kicked over to ENT. I can find no further local information from there. I am expecting full thyroidectomy, possible RAI based on educated inferences.

Thanks!

hmm....no FNA yet? 

I would recommend not to worry about a low iodine diet at this point since that would be far off in the future, if even needed. 

Staging of thyroid cancer really has little to do with the I-131 ablation recommendation.

The only thing you can do at this point is wait for the FNA.  Why it takes a month to get one in any country will continue to baffle me.

I'd recommned not to put the cart in front of the horse.  Thyroid nodules are very, very common while thyroid cancer is not.

Good luck!

RE: pre-diagnosis, what to expect

by MommyBear on Fri Jul 12, 2019 02:43 AM

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Hi student,

i am pretty much in the early stage of my journey so far, so I'd like to share mine with you. hopefully, it would give you some sense of what you could expect in terms of process -- of course, different patients/situations could mean possiible difference in the way our treatments would be approached. but at the very least, it could give you some idea --

i was officially diagnosed with papillary thyroid ca in Nov 2018, via FNA. i say officially because the thyroid nodules/lumps were discovered in 2017 but i initially declined biopsy and requested for 2nd opinion. the second doctor that I was referred to was an Endo surgeon at Princess Margaret. Based on the ultrasound results, he was already fairly confident that the nodules were malignant and a biopsy would only officially confirm what he already knows. I requested to delay the biopsy until after my wedding in the Fall of 2018. So finally, biopsy confirmed my worst nightmare - the big C. 

Following biopsy in Nov 2018, I had total thyroidectomy with central neck dissection in Feb 2019 with 11 lymph nodes removed.

1 month post-surgery, I had a follow-up check up with my surgeon, which is when we confirmed the need for RAI. While I was diagnosed with Stage 1, the size of the lymph nodes removed necessitated an RAI treatment. And as of today, I am 2 weeks post-RAI. I have yet to hear about the results of my post-RAI body scan (which I had 1 week following the pill), but I imagine I would have already heard from the doctors if there was anything urgent or concerning about the results -- so I'm thinking no news is good news :-)

After my next follow-up with the surgeon (6 months post-surgery), I will then be turned over for management by an Endocrinologist. I imagine the Endo will be my first point of contact from hereon in.

Don't be too concerned about the RAI for now. Take it one step at a time. The LID is fairly manageable - just know which ones to avoid (so preparing your own food is the best way to go) and use non-iodized salt. 

I hope this helps in some way. we are all in this journey together.

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