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Confused and Scared

AlohaMom
Posts: 2
Joined: Apr 2011

Hello,

This is my first post and I am hoping some of you have some information or thoughts to help me. I am 30 years old, and recently underwent a right thyroidectomy to remove a lesion. We did the removal since the FNA came back indeterminate. After the surgery the biopsy again came back as indeterminate, right now we are waiting to hear from a path lab on the mainland (I live in Hawaii). Also, I now have a 2nd surgery scheduled to remove the left side. And my drs say since they can't completely determine if the lesion if benign they want to treat it as if it is not benign. I am really scared and don't know what to do. Also, if it is CA I don't even know what kind it is? They say the lesion was an oncocytic tumor. Thru google this seems to be a more rare form. But there only seems to be three kinds of thyroid CA. So any help with the confusion would be greatly appreciated.

Thank you.

nasher
Posts: 507
Joined: Apr 2010

well....

Oncocyte - An oncocyte is an epithelial cell characterized by an excessive amount of mitochondria, resulting in an abundant acidophilic, granular cytoplasm. Oncocytes can be benign or can undergo malignant transformation.

Also known as: Hurthle cell (thyroid gland only)

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A Hurthle cell is a cell in the thyroid that is often associated with Hashimoto's thyroiditisas well as follicular thyroid cancer.

A Hurthle cell adenoma is a type of thyroid benign tumor that, in rare cases, has the potential to become malignant and metastasize (Hurthle cell carcinoma). Hurthle cells are also found in Hashimoto's thyroiditis and toxic and nontoxic nodular goiter. Hurthle cells are hypothesized to be of follicular epithelial origin.
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Hurthle Cell Thyroid Cancer: Not Quite the Same as Follicular Cancer
Hurthle cell thyroid cancer is usually classified with follicular thyroid cancer, although it really is a distinct kind of tumor. It is an unusual tumor, making up about 4% of thyroid cancers and is only about one-fourth as common as follicular cancers
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How Is Hurthle Cell Cancer Treated?
Patients with Hurthle cell thyroid cancer, if there is more than minimal invasion, should generally undergo removal of all or nearly all of their thyroid tissue. In all areas of well-differentiated thyroid cancer, there is some disagreement about how extensive the surgery should be; however, because Hurthle cell tumors tend to occur in patients with more serious risk factors, the surgery is correspondingly more aggressive. If there are involved lymph nodes, they are removed, although this is uncommon.

Surgery may be followed with radioactive iodine. Radioactive iodine does not work as well for Hurthle cell cancer as it does for follicular cancer, because the Hurthle cells are less likely to "take up" the radioactive iodine and then be destroyed by it. However, it is well-tolerated treatment and may be helpful in some cases.

Patients are then followed at regular intervals to check for recurrence, which can be dangerous in Hurthle cell cancer and needs to be watched for carefully.

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end of cut and paste....

If they remove your entire thyroid you will be on thyroid replacement meds for the rest of your life... its a pill or 2 a day and rather simple to take, even with 1/2 a thyroid you might need to be on thyroid replacement.

I dont think any of us here are doctors but we will help as much as we can and answer questions as we can.

trust me i am pretty sure every one of us went through the scared phase or phases... myself I am approaching my 1 year after scan and i am getting nervous for no good reason.

One thing you need to do is to take charge of your medical and what surgeries they want to do vs what is good for you..

I would ask them a few questions

1) how long till the results come back if its cancerous or not?
2) what are the surgery risks?
3) how much more risk is there if you wait for the results from the mainland?
4) why are they wanting to treat it as not benign if they dont know yet?
5) what makes them think it might be more serious?

get a second opinion...

another thing to think about is what medical insurance do you have and whats covered and whats not.

before they put you under the knife a second time they should wait to figure out if its cancerous or not (it took them 6 days for me but i live in the mainland) I would figure its only going to take 2-3 days max for the sample to get to the mainland so your looking at less than 2 weeks before they know for sure.

if its not cancerous and the 1/2 of your thyroid left is working normaly why remove it?

good luck and keep us informed and ask questions as you come up with them

Craig

AlohaMom
Posts: 2
Joined: Apr 2011

Thank you very much Craig! I actually called my surgeon since I was so confused. Still waiting for results from the mainland. But he answered all my questions. So I still have my 2nd surgery scheduled. Then will go for the RAI Scan (any advice or thoughts on that??????) And will go from there.

Are you a thyroid CA survivor??

nasher
Posts: 507
Joined: Apr 2010

brief summary (i have a 1 year story on this site as well)

Sep-Nov2009 started feeling off and tired and started rapidly gaining weight with no change in diet.

5 Dec 2009 they determined that i had an enlarged thyroid
12 Jan 2010 Fine Needle aspiration (came back inconclusive)
22 Feb 2010 Right side of thyroid removed including 7.1 cm goiter
02 Mar 2010 Informed of both follicular and papillary cancer.
09 Mar 2010 Thyroidectomy completion surgery
3-5 May 2010 RAI Scan
5 May 2010 RAI Therapy dose 175 mCi of I-131 t1/2= 8 days
14 May 2010 Follow-up Scan

Coming up this year in early May I do my 1 year out scan

They still have not gotten the dose for my Synthroid and Cytomel to the correct level for me.
Most people are just put on Synthroid but I am on an experimental trial to prove that a combination of synthroid and Cytomel do much better than synthroid alone.

...

Yes al9463 is right they try to be very cautious of mentioning about cancer, and yes it will get very frustrating.

Yes it defiantly helps to have a spouse or loved one help you with the research it will also help them understand what you are going through.

There is a lot of wrong or partially correct information on the web, and remember each case is individual.

the RAI scan isn’t bad (the Low Iodine Diet is though)
The RAI treatment is not normally bad but for me (i had a larger dose than most) I ran into a lot of the side effects that are on the full disclosure info (i still have a metallic taste in my mouth and my salivary glands do not work at 100%).

I agree about not living test to test but when you approach your next test you will probably need to do some planning for it.. but defiantly live your life.

as for advice on the RAI Scan... go to www.thyca.org and read up about the low iodine diet. It may be harder to do in Hawaii cause of the difference of common foods out there vs the mainland.

one thing that confused me about al9463 post is that it was not injection for me or anyone else i know... everyone i talked to have gotten pill or liquid form for the trace dose and the treatment dose. Maybe he was thinking about Thyrogen injections...

the main issue you will have if you get a treatment dose is keeping family and pets away for the necessary days to reduce their risk from the radiation.

the reason they will want to do a RAI Scan though is to determine if there is any thyroid tissue anywhere else in your body.

Craig

al9463
Posts: 2
Joined: Apr 2011

Realize that the term "RAI scan" can be used in different ways. Radioactive Iodine treatment is a relatively high dose of radioactive iodine whose goal it is to kill thyroid cells in your body if you have had your thyroid removed. This is typically taken as a pill. You take the pill, stay away from family and friends for a few days, then you typically have a full body scan. They do the scan to take advantage of the fact that you just had a high-dose RAI treatment, which makes it an ideal time for a scan. While you typically do have a scan after a RAI treatment, the real purpose of the higher radiation does is to kill the cancer cells, and the scan shows how effective the treatment was.

You may also have a Radioactive Iodine scan. The difference here is that the radiation typically comes as an injection, and its at a much lower dose than before. Again, the iodine is absorbed by any thyroid cells which can show up in a scan, but since the dose is low, this is a diagnostic imaging test. The down side of the lower dose radiation, is that the scans are not as sensitive as those performed after a radioactive treatment.

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