# Pathology Report In



## toddsgal (Aug 16, 2013)

Well yesterday was my first appointment with my surgeon since my surgery (Dec 11).
Results:
T1 N0 M0. (Good news I think). Three tumours (2 right side, 1 in the left...measuring 1.7cm, .70cm & .50cm). Thank goodness they did both surgeries!!
I will be referred to a new endocrinologist in the next 3 months...he'll decide what, if any treatment is necessary? (ie RAI)
He will also oversee my thyroid med's and dosage!! I'm thankful for that. Good to gave someone who specializes in it!!
No lymph node involvement makes me happy)
Now...to deal with the Synthroid dosage....I'm on 0.125mcg but he thinks I may need a higher dose (due to side effects) but I gave to wait another 2 weeks for my blood test (it's only 4 weeks tomorrow!!)
I'm exhausted, hairs falling out, body aches, hot flashes are horrible!!?? This is one heck of a ride and experience!!


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## joplin1975 (Jul 21, 2011)

Sounds like good news.

We knew going in that I'd have RAI, so there was no real decision. BUT, my team insisted on a post-op WBS just to make sure there were not distant mets. The results of that, in concert with the surgical path results were used to determine my dose. Of course, before I had the scan the tech told me if there was no uptake, they'd revisit the issue of skipping RAI...but that didn't happen.


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## toddsgal (Aug 16, 2013)

Thanks Joplin...can I ask what type of WBS?? MRI, CT?
I'm really tired of doctors saying "we got it in time, it was small"???? Surgeon yesterday said, I don't think you'll need RAI??
My question...if it were him, would he do it??? Because, I'm feeling that I would rather be safe than sorry!!! It is my body and they already told me "the wrong thing once "- no it's not cancer!!!! Then September we find out yes it is??? 
Everything I've read says if there is follicular variant, RAI is the norm!!?? So why say no??
I'm not wishing for it, I'd prefer it didn't happen - I just want to be healthy again & free of cancer!!!! 

Thanks!!


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## webster2 (May 19, 2011)

Good news! I had follicular variant in the small ones, the big one (5cm) was benign. No lymph node involvement. No RAI. WBS at 1 year, clear. If you have reservations about your treatment plan, share them with your medical team. The replacement dose for me has been a long road and beginning to see the light at the end of the tunnel.

Good luck to you! It does get better.


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## KeepOnGoing (Jan 2, 2013)

I had follicular variant, too - 2cm, fully encapsulated and no RAI.

I was jolly sceptical about not having RAI to start with, but was convinced by my oncologist. There does seem to be a move towards being more conservative in their approach. Eventually, after listening to the list of side effects, knowing that I had pretty much all the possible side effects from the surgery (esp voice issues) I decided to follow the oncologist's advice. I do still wonder once in a while whether my FVPC has read the rule book and knows it's not supposed to come back, but so far it is behaving itself and I'm receiving regular follow up to make sure that it continues to do so.


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## joplin1975 (Jul 21, 2011)

toddsgal said:


> Thanks Joplin...can I ask what type of WBS?? MRI, CT?


A whole body scan or a radioiodine uptake scan or a metastatic cancer search...it's all the same thing, just different terms. They give you a tracer dose of radioactive iodine to see how much thyroid cells are remaining and to confirm they are all in the thyroid bed (as opposed to distant mets).


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## toddsgal (Aug 16, 2013)

After my August PT (right side & isthmus) the path results showed two tumours, the large one (1.7cm) was encapsulated but the .70cm was only partially encapsulated?! Of course they were papillary with follicular variant. Although before surgery they said no, all tests show it's benign?!? So doctors aren't always right!!

This TT (Dec 11) I knew going in that after August's surgery there were 3 nodules on the left lobe! Well, one of those was also cancer but thank goodness the tumour was very small (micro was his word Encapsulated, papillary cancer!

I'm sad....I gave days were I wonder what caused this?? I never smoked, drank-yes, occasionally! My cousins, sister & brother both had throat cancer (past 5 years) and their sister had breast cancer (which returned 3 times, she's clear so far)?? My Dad and Uncle (their father) brothers, both had brain tumours!! Unfortunately, my Dad lost his battle...the tumour was confined within the brain and in-operable My Uncles was caught early and was removed (but eh gas no taste and hearing loss with some paralysis).
Do you think it's genetic...I do!!!

My one saving grace, knowing I can go on this forum fir support and education!! Thanks you everyone, what I've learned about thyroid cancer, I've learned from you


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## KeepOnGoing (Jan 2, 2013)

I understand what you mean - I, too, was told that there was nothing wrong with me, then ooops! you seem to have cancer! It was a huge shock, after 6 months of being brushed off as a hypochondriac... It has shaken my faith in doctors rather, although the doctors who failed to diagnose me for 6 months are, needless to say, not involved in my care any more and my oncologist is fab!

One reason why I value the advice and information on here so much is because it gives me confidence on those days when I'm having a bit of a wobble.

And yes, my family have a history of cancer, including my mum who died of breast cancer 25 years ago. It does make you wonder - I've certainly done my share of "what did I do to deserve this?" questioning. But we have no history whatsoever of thyroid stuff.


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## toddsgal (Aug 16, 2013)

Thanks all for the words of encouragement!!
My big question now....I see the endo March 24, my ENT surgeon suggested I won't need RAI (slow growing type of cancer, his words!!?). BUT how do you all feel?? My tumours are papillary carcinoma with follicular variant (two encapsulated, one partially encapsulated), no lymph node metastasis! What would you do??!

Part of me thinks I should have RAI, because a year ago my FNA said it was clear!!?? But now, only 13 months later there were 3 cancer nodules!!! Is it better to be safe than sorry?? I'm not sure??


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## joplin1975 (Jul 21, 2011)

I believe the guidelines (ATA) are that RAI is recommended if:

1) tumors are larger than 1cm;

2) tumors are not all well-encapsulated; and,

3) if there is lymph node involvement.

Since you have two of the three, I'd be inclined to do the RAI. If you don't, just be sure to ask a lot of questions about follow-up monitoring.


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## KeepOnGoing (Jan 2, 2013)

I'm in the UK and had one, fully encapsulated FVPC, 2cm with no spread to either the other side or anywhere else.

As I said, I didn't have RAI. However, it was offered as an option to me - if I had said that I would prefer it to be done, then it would have happened.

As it was, I decided to follow the recommendation of my oncologist. Every so often I wonder if I did the right thing (like every time I'm waiting for a thyroglobulin result!) but you do have to follow your instincts on this one - if you would genuinely feel happier and more confident if RAI happened, then press for it. You've got to live with the decision you make for a long time...

It appears to me that follow-up is a little more straight forward if you do have RAI - because I didn't have it, there is always a little bit of doubt about my thyroglobulin levels, as there must be a bit of thyroid tissue left somewhere which surgery didn't remove. That's the main reason why I wonder if I did the right thing. But overall I'm happy I chose the right route for me.

Oh, and I wasn't completely convinced by the "slow-growing" argument either - my lump appeared overnight, as far as I could tell, and grew pretty rapidly. I preferred the description "lazy" for my particular pathology results!


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## joplin1975 (Jul 21, 2011)

KeepOnGoing said:


> It appears to me that follow-up is a little more straight forward if you do have RAI - because I didn't have it, there is always a little bit of doubt about my thyroglobulin levels, as there must be a bit of thyroid tissue left somewhere which surgery didn't remove. That's the main reason why I wonder if I did the right thing. But overall I'm happy I chose the right route for me.
> 
> Oh, and I wasn't completely convinced by the "slow-growing" argument either - my lump appeared overnight, as far as I could tell, and grew pretty rapidly. I preferred the description "lazy" for my particular pathology results!


Post-RAI monitoring is a bit easier, yes. I mean, you look for no TgAB and a low, low, low TG. PLus clean scans and ultrasounds.

But, you can monitor without RAI. You just need more frequent bloodwork. For example, I didn't have Tg drawn until a year out. All we were looking for is a number below 2.0. Without RAI, I would have had Tg drawn every three months. There wouldn't be a magical number. We would want it to decrease and then stabilize. As long as it didn't increase, then all was considered good.

Just a thought...you can wait and have RAI later. You don't need to have it right this minute. You could stew on this a while. Sometimes with distance, things seem clearer.


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## toddsgal (Aug 16, 2013)

Thanks!! I'm just so overwhelmed and confused!!
I'm on Synthroid (125) and jot feeling great!!?? I'm not sleeping well yet exhausted!! My toe nail peeled off half way down, scared the heck out of me!!! My hair is falling out, I'm hot & cold (have horrible hot flashes, horrible) groggy headaches!!??? I have my six week blood work this Tuesday....here's hoping!? My big question on this (as it's all foreign to me) I don't understand all these number and my blood requisition only says TSH....no T4 or T3?!? What should I be seeing?? I know I've read my TSH will be kept suppressed but I just really don't understand all of this!!
Is there any documentation I can read that will help explain all this??!!


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## joplin1975 (Jul 21, 2011)

I don't have a good link handy, but I'm sure others will be around shortly to give you some good links.

The basics:

TSH is produced by the pituitary. Because it is a stimulating hormone, any remaining thyroid cells (cancerous and non-cancerous) will be stimulated to re-grow if your TSH is high. So, you want to keep that low and strictly in terms of post-surgical cancer management, there's a big focus on TSH.

Also, a low TSH essentially means that, according to your pituitary, you have enough thyroid hormones circulating on your body. But your pituitary feedback system isn't fool proof. Sometimes your TSH isn't an accurate reflection of exactly how much thyroid hormones are in your body. So, you need to measure those hormones directly to "fine tune" the medication regulation process.

Your thyroid produces T4. Synthroid is a synthetic form of T4. When you body needs more hormone for metabolic processes, your body converts T4 to T3 via the liver. Sometimes, people aren't effectively converting T4 to T3 and need to add T3 to their medication cocktail.

When you are "fine tuning" the meds, you need to measure free T4 (the free part is important, as it means the unbound hormone available for yiur body to use) to make sure there's enough hormone available for your body to convert. You also need to measure fre T3 to make sure you are converting properly. If, for example, your free t4 is high or on the higher side of the reference range but your t3 is low or on the lower side of the reference range, you would assume you aren't converting and you'd add in t3 to the mix. However, if both your frees are low, you'd want to add more t4 first and get that free t4 number up to see how that impacts free t3.


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## toddsgal (Aug 16, 2013)

Joplin, thank you so much!!
That helps me, it's starting to make sense)
Unfortunately, my blood work requisition for this week only says TSH!! ??
I guess I'll be discussing this with my doctor this week also!!
Wish me luck, they can be stubborn....don't like to be told lol


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## joplin1975 (Jul 21, 2011)

Good luck!

I'm treated by a surgeon and an endo. I like my surgeon better. His approach to things (which I'm not saying is right!) is to decide in that range you want your TSH (for cancer treatment/management purposes), see if you can get there with T4 drugs only, and the once you are in that range, he starts running the frees for, again, fine tuning purposes.

Which is a long way of saying while not ideal, starting with TSH only is not awful. As long as the focus doesn't stay on TSH alone.


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