# Papillary Carcinoma Diagnosis ...



## OhGee (Sep 29, 2013)

Hi,

This afternoon I received the results from the FNA.

I have papillary carcinoma in a nodule located on my right thyroid lobe and am scheduled to see a surgeon on November 25th.

Today, the Dr. told me that the surgeon may want to do a CT scan prior to the surgery to determine exactly where the cancer is located and whether or not it has spread to anywhere else (lymph nodes). Then he said that he may not require a CT and will possibly schedule the surgery without it.

The Dr said that the surgeon will remove the nodule/cancer, send it to be tested and after that he will know what stage of cancer I'm dealing with.

I guess I'm wondering what to expect and whether or not anyone can think of any questions that are important for me to ask.

Thanks again for your advice and support.

Carrie


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## joplin1975 (Jul 21, 2011)

Well...

Welcome to the club. I'm sorry you're here.

It's really hard to say what to expect, because treatment is really dependent on how developed the disease is.

Most of us get a total thyroidectomy. Some of us have follow up RAI. Some don't. There's been a movement lately to really pull back I'm how aggressively PTC is treated.

I found the surgery itself to be easy physically speaking, RAI to be rather unremarkable, and the medication regulation process to be difficult. Other people had totally different experiences.

I would ask the surgeon how many thyroid surgeries he or she does a week, how the incision will be closed, and how follow up after ther surgery (to include how a decision about RAI will be made, who will make decision about post op meds, and what is the long term maintenance plan).


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## Octavia (Aug 1, 2011)

OhGee, how large is the nodule they biopsied? How old are you? And are you male or female?

Like joplin, my surgeries and RAI were pretty easy (as surgeries go) and unremarkable. Unlike joplin, getting my medicine regulated was a piece of cake (very easy) simply because my doctor started me on a very good starting dose for my weight. I was started on 125 mcg, got bumped up to 150 mcg and stayed on that for about a year. Now, I take 137 mcg plus some Cytomel to boost my T3.

It's not a terrible idea to get the CT scan (with iodine contrast, I assume) so your surgeon knows whether to remove lymph nodes while he's in there.


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## Endocrine_Surgeon (Oct 31, 2013)

We rarely do CT scans for staging thyroid cancer. A neck ultrasound is all that most people need. You may have a special scenario, but for almost all patients, an ultrasound is the study of choice.

Also, you do NOT want to have a CT with contrast if you have thyroid cancer and there is a possibility you will receive radioactive iodine. The iodine in the contrast means that you will have to delay the radioactive iodine treatment (which probably won't affect overall outcome, but will drag out the treatment process).


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## Octavia (Aug 1, 2011)

Endocrine_Surgeon said:


> Also, you do NOT want to have a CT with contrast if you have thyroid cancer and there is a possibility you will receive radioactive iodine. The iodine in the contrast means that you will have to delay the radioactive iodine treatment (which probably won't affect overall outcome, but will drag out the treatment process).


Oh - that's a good point, and I had completely forgotten that little detail. My doctor mistakenly ordered a CT scan with iodine contrast after my first surgery (before my second surgery), and when he realized it, I had to wait several weeks to get my RAI treatment.


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## OhGee (Sep 29, 2013)

Hi,

I am a 45 yr old female and the nodule was approx 1.7 cm x 1.6 cm.


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## joplin1975 (Jul 21, 2011)

The good doctor offers solid advice. I had a pre-surgery lymph node mapping ultrasound. No CT here...

I think the general advice is to err on the side of being more aggressive. Anyone over 40 has a slightly increased risk. In my mind, that would mean: a TT with a central neck dissection, RAI, and TSH suppression with whole body scans for follow up.


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## OhGee (Sep 29, 2013)

Thanks for your comments ...

I am scheduled for a TT on December 18th. I will spend one night in the hospital & as for follow up, the surgeon said he'll wait for the results to return from pathology. I may or may not require additional treatment. It sounds quite simple, he doesn't have any reason to believe that the cancer has gone anywhere else so I'm hoping it's been contained to the tumour. He said I'll see an oncologist after everything is done ... go from there I guess.

I'm really not sure what else I should be asking ... if anyone has any suggestions ... please feel free to toss them out.

Thank you,
Carrie


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## joplin1975 (Jul 21, 2011)

I think they'll cover the basics, but I would ask:

-how are they closing the incision? Stitches or glue, yes...staples, NO;

-how may TTs does s/he do a year?

-will you stay overnight in the hospital (likely)?

-will s/he check calcium should be a YES)?;

-when will you start post-op meds?;

-will s/he remove lymph nodes or will that be an in-OR decision?;

-will the oncologist be managing your meds or do you need to set something up with your PCP?

Good luck!


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## OhGee (Sep 29, 2013)

Hi Joplin,

Thanks for the advise re: questions

I don't know how many surgeries that the surgeon has done but I do know that this is his 'specialty'. I am scheduled to stay one night in the hopsital after the operation and will head home the next morning.

I will ask about closing the incision, checking my calcium and the meds.

I did ask the surgeon about the lymph nodes ... he said that he has no reason to believe that the cancer has spread into them but he'll deal with whatever is there when I'm in the OR. He mentioned some sort of scan w/dye after the fact, to confirm that he indeed got all the cancer. My friend told me that you have to stop the med's for 6 wks before they do the scan so I guess I'm wondering if they will do the scan before I start on the meds.

So many questions ... feels overwhelming right now. Thyroid cancer isn't like a pulled muscle, a headache, a broken bone...it seems hard to wrap my head around it right now as it feels so foreign.


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## joplin1975 (Jul 21, 2011)

It is weird, I get it.

The scan he is referring to is the whole body scan or radioiodine uptake scan. You are given a tracer dose of radioactive iodine, which is absorbed by thyroid and only thyroid cells. If there are areas of activity, then you are a candidate for RAI.

Keep in mind that even the best of the best thyroid surgeons have a hard time getting *every* single thyroid cell. They'll use the post-op path report (to see if the tumor was encapsulated or not) and the results from the scan to determine if you need RAI treatment. In the past, just about everyone got RAI. Now, they are trying to be more judicious about the use of RAI.

Going off your meds in preparation for the scan -- they want your TSH super high so your thyroid cells "suck up" as much of the radioactive iodine as possible -- used to mean you'd be off your meds for two to six weeks until your TSH was high enough (mine shot up to 71 within two weeks, which is plenty high). Now, the more humane approach is to use thyrogen, which artifically raises your TSH without withholding medication. "Going hypo" is not horrible, but it's certainly not pleasant. so if your doctor is willing to use thyrogen, take it!


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