# Endo or Onco????



## Avas#1momma

Hi. I just received my pathology report on Thursday and was hoping the community could help me decipher some of the meanings. I also am wondering if I should go to an Endocrinologist or an Oncologist for my follow up care.

Final Diagnosis:

Part 1: Thyroid, Total Thyroidectomy 20 grams on May 23, 2014

A. Papillary Thyroid Carcinoma, four foci size range 0.6cm to 3.5cm, confined to thyroid; vascular and lymphatic invasion present, all unencapsulated.

B. Largest focus: Conventional type with columnar cells.

C. Pathological Stage: T2, N1a; stage 1

D. Chronic Lymphocytic thyroiditis

Part 2: Lymph Node, Central Compartment, selective dissection

A. Metastatic Papillary Thyroid Carcinoma in 5/5 lymph nodes. No extranodal extension.

B. Normocellular parathyroid

Comments by Radiologist:

The largest tumor has an unusual inflammatory response in the fibrovascular cores of the tumor papillae. Most of the cells are CD68 positive suggesting monocytoid derivation, a subset are CD1a and S100 positive indicative of Langerhans type cells.

The surgeon says the considers there to be 3 types of Thyca...1. average, 2. intermediate 3. aggressive. She states she believes I am somewhere between intermediate and aggressive. I am waiting for the nurse to call and schedule my RAI treatment. She also increased my synthroid from 137mcg to 175mcg. I have not had any blood work post hospital discharge. She says I have a high likelihood of reoccurance but my mortality rate while increased by 15% is still very low. Thank GOD! She did say that we won't know if the cancer has metastatisized (spelling?) until after my WBS 7 days post RAI. I am FREAKING out. I was nervous about all this before but my post op (recovery room) meeting with the surgeon was so upbeat and positive that I was convinced that it was a single, encapsulated tumor with no lymph involvement. I didn't even KNOW it could invade my vessels. I feel so stupid. I am SO ANGRY (at the world, fate, luck??) and SO SO SCARED. I just want to hop on a plane and go drink martinis on the beach. Her recommendation was that I have RAI treatment then follow up with an Endo 3mos post RAI, then 6mos, then yearly. Is that frequent enough? And shouldn't I be having ultrasounds or more WBS's? I'm clueless.


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## joplin1975

Oh, dang, I'm sorry. I very much appreciate how scary it is to get pathology results.

A couple of thoughts:

- Even the more aggressive variants of papillary cancer still have an excellent prognosis.

- I think with thyroid disease generally (to include thyroid cancer), the type of doctor you see is less important than finding a doctor with whom you feel comfortable, someone who will listen to your symptoms while also considering lab results, and someone well-versed in the changing thyca landscape. For that reason, I wouldn't want to wait to see an endo until three months post-RAI. I'd want to go into RAI feeling comfortable with my doc, whoever that may be.

- So, related, while my long term care is managed by an endo, many see oncologists and have fantastic care. My surgeon (who also offered to manage my long term care) is a general surgeon specializing in thyroid surgeries, but I think most people go with ENT...others use endocrine surgeons. My RAI was administered a nuclear medicine doctor, while others use endos or a radiation oncologist. Ask around (thyroid surgeries and cancer is super common) or poke around online, etc. The extra effort will be worth it. 

- Thyroid cancer generally is kinda wacky but especially wacky is RAI. It takes weeks, sometimes months, to work. So testing much sooner than than the three month mark doesn't tell you much. You'll still "present" as a patient with evidence of disease. Actually, having testing at the three month mark is very early and indicates to me that your medical team sounds like they are keeping a *very* close eye on you. I had six positive thyroid nodules, vascular invasion,and lymph node involvement (standard pap, no variant) and my first post-treatment testing was at the year mark.

- It sounds like they are not doing a pre-RAI scan. I would ask about it. I had one and it was reassuring to hear there were no mets outside of my neck, I also knew the nuc med doctor could really "fine tune" my RAI, tailoring it to my specific case, rather than using more general dosing guidelines.

- Related (again  ), there is a move to be more conservative with RAI dosing. The changing perspective makes a lot of sense to me, but I think in your case, I'd advise to being open to a larger dose.


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## Andros

Hoh boy! I hate to hear this BUT, the good news is they found it and something will be done about it. So many go undiagnosed.

That said, it is my humble opinion that you may be better off w/an ENT. That is for the surgery. You also might have to undergo some radiation after your surgery but that remains to be seen and not to worry about that now.

We are here for you and in fact we have several mods and "dedicated" posters who have been through the fire and I know for certain they will aid and support you as much as possible.

Sending hugs and prayers,


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## Octavia

The "standard" approach at the hospital I went to for my surgeries is for the ENT to do the surgery, and follow-up care to be provided by a radiation oncologist. That was the approach that was presented to me, with no other options presented. Being new to the whole cancer thing at the time, I didn't question it, and my care has been very good.

I agree with joplin above, especially on two things:

1. Different hospitals/doctors/places do things differently. Many of us here have taken a different path as far as who we see for RAI, scans, and follow-up care after surgery. You may have options... or, like me, you may be "told" what your approach will be, and I might recommend going with that because that tells me it's the "standard" approach in your area, and the docs you will see will have lots of experience with thyca. (Make sure they do.)

2. I recommend you be very, very open to a larger dose of RAI. What does that mean? Well, over 100 millicuries...maybe 150 or so. For comparison, I had a 3.2 cm tumor with no metastasis, and I was given 100 millicuries of RAI to make sure any remaining thyroid cells were killed off.

My treatment and follow-up is this:

- 100 millicuries RAI treatment and whole body scan shortly (few weeks) after surgery (no mets)

- Annual whole body scan one year later (no mets)

- Annual whole body scan another year later (no mets)

- Good to go until five years out, when I'll have another whole body scan

No, mind you, I did not have an aggressive form like you seem to...so your plan will likely be a bit different. For example, I'm not sure I'd be comfortable waiting a full year for that next body scan...maybe 6 months would be better.

Whoever you go to for your treatment and care, just make sure they've done this many times before.

And when you're all done, hop on that plane and drink those martinis on the beach!!!


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## Avas#1momma

I'm back and I've been doing a lot of reading. Also found another ccv-PTC patient like me. She is super helpful but is telling me that ccv tends to be RAI resistant. I contacted my pcp and he referred me to an oncologist. The oncologist says that he would recommend a higher dose and possibly 2 rounds of rai. My Endo says a low dose and just one. They have scheduled me to go home same day the rai is administered and I live 4hrs from the hospital. Does this sound right? I am a little nervous about being in a car for that long with another person. :/ I'm also scheduled for a pre-wbs with I-123 and I've read it doesn't "glow" as well as a tracer amount of I-131. I'm not feeling confident in the course the endo has set up for me but am with what the Onco has recommended. Is it possible for the Onco to be consulted with regarding rai amounts? I'm terrible at standing up for myself. Even with something as important as this. :/ I need a backbone. Grrrrrr!


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## Octavia

I'm not sure what ccv is, but I'm glad you found someone who is helpful.

Assuming your cancer is not RAI-resistant as your friend is suggesting, I am inclined to agree with your oncologist (who probably deals with thyroid cancer more often than the endo, but that would be worth verifying).

4 hours away? Wow...you can't get your treatment closer to home? If you get a large dose of RAI, I think 4 hours in a car with someone else is excessive immediately after receiving the dose (especially if your friend is a female of child-bearing age).


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## joplin1975

I think you'd want a pree-RAI scan with I123. It may not glow as much, but if you Tg is still high and it shows not uptake, then you know you will be non-avid for RAI and can look at other options (additional surgery, EBR, or possible more scans like a PET scan). BTW, even though some variants tend to be non-avid, it is very, very rare. I think I would go into this thinking RAI will work.

I would ask the onc to contact the endo and discuss. I don't think you'll want to be in the car with someone that long if you have a hi dose. I would consider either driving myself or asking to do the high level RAI on an inpatient basis.


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## Avas#1momma

CCV is columnar cell variant. I agree that I want the higher dose and should be inpatient but that's not what the endo is telling me. I'm calling the Onco today to ask that he speak with the endo or nuc med team. I have to have a driver due to recent spine surgery. I'm not cleared to drive for several weeks. Yes, I has 2 surgeries within 3 weeks of each other. The joys of being me.  also, is the thy roger injection enough to get my tsh where they want it prior to wbs and rai?


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## joplin1975

Ah, gotcha.

If you go with a high dose, you really shouldn't be within three feet on anyone else for any length of time. Hopefully your oncologist can talk some sense into these people.  You've had a heck of a couple month, uh???!!

Yes, thyrogen will get your TSH high enough. The first time my TSH jumped to over 100 within 15 minutes of the second shot. The second time it was at 76 in the same time frame. Anything over 30ish (my doc would say 45 if you have a trickier case) is fine.


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