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Tavish
June 6th, 2008, 11:05 PM
Hi there-
I'm new here but not to the "C" word, I was dx'ed with breast cancer at age 30 in 1999. I went through surgery, chemo, radiation and pills for 5 years. All clear, yea!

So for the past 20 years (whole adult life) I was told that i have a large thyroid. Blood tests were always normal, so no further f/u needed. Last year my GYN suggested that I see an endocrinologist. My PCP did blood work (normal again) but we did an ultrasound too, turns out I have 2 nodules on the left side (same side as breast ca, hmmmm). Radioactive scan indicated cold nodules, but no sign of cancer. Then I learned I have a family hx of Hashi's so I saw an endocrinologist who confirmed the same for me with antibody levels over 400. He wanted to do an FNA to be sure, and now it seems that the findings are consistent with papillary carcinoma. the good kind, don;t worry. (THat is one good thing about breast cancer, is that thyroid cancer becomes no big deal!).

Anyway, seeing the surgeon on Monday to schedule date for removal.
What questions should I ask? Would I be better off removing the whole thyroid instead of just the lobe? Are there side effects of the radioactive pill? What is the recovery like?

Any advice?
Thanks,
Lori

NastyHashi
June 7th, 2008, 10:04 AM
I am not sure I understand, you already had the FNA done or not?

There's a big difference in how treatment is approached if it is cancer or not.

If it is NOT cancer, they will probably do a lobectomy to get rid of the nudules so you will still have a half a functioning thyroid.

If it is cancer, they almost always remove the entire gland and follow up with a dose of RAI to kill off anything the surgery might have missed.

Usually an FNA is conclusive. They either find cancer or not - usually but that is not always the case. Sometimes and FNA will be inconclusive.

Hashi's is the most common type of thyroid problem out of all. I have it, my mom had it, my wife has it. My mom had nodules too and they removed half her gland. 6 years later the other half died off on its own (common with hashi's) and now she just takes some extra meds but is totally fine.

As far as removal of the entire gland and what questions to ask, EXPERIENCE is the number 1 thing. Ask your doctor how many thyroidectomies he has performed over the last month, last year, etc. The procedure itself is relatively "easy" in the scheme of surgeries and its got a very high success rate.

One of the biggest setbacks anyone has is the doc knicks the nerves to the voice box, leaving the patient with a raspy voice for a few weeks or one of the parathyroid glands (there are 4 small parathyroid glands either burried in or around your thyroid) gets cut. The parathyroids control calcium levels. It is pretty typicaly after surgery to have your calcium levels monitored closely. If post-surgery you feel the outside of your lips and around your mouth getting numb or tingly feeling, ask a doctor to check your calcium right away. A good dose of Tums or other calcium supplements will usually straighten that problem right out but again, MOST doctors are aware of this and will be checking for that post-surgery. It shouldnt ever get to the point of tingling around the mouth. It might even be protocol to give you some extra calcium after surgery just to be safe.

Once the thyroid is gone, its done working. you will be put on meds and titered to a proper level where you will hopefully remain and feel well the rest of your life like millions and millions of other folks have.

Tavish
June 7th, 2008, 11:17 AM
Hi and thanks for the reply.
I had the FNA done on 5/14. The path report is flagged to the doctor as "Attention: Report of Malignancy". While it states that the findings are consistent with papillary ca, it indicates that there was a problem with the drying sample and therefore it is not really a valid test. Endo thinks 50-50 chance it is or is not cancer, and only way to know is to remove it. I think they will take the left side for sure, not sure if they would take the right side yet. I think he said they want to see if the left is negative or not. If it is cancer, they would go take the right side too. I would rather have them take the whole thing than go through 2 separate lobectomies,right?

Wondering if Hashi's places a person at higher risk for thyroid ca? Of those with thyroid ca, what is the % that also have Hashi's?
Lori

NastyHashi
June 7th, 2008, 04:28 PM
Would it not be in the best interest of everyone involved to get another FNA done BEFORE surgery? It only takes 2 minutes and is usually definitive when done right. I think I would insist on finding out if its cancer or not before I go under the knife since the approach is different.

If not, I believe the doctors can make the call while you are under the knife. I am sure they can see the quality of your thyroid and perhaps even have time for a quick path report while you are still under. All they really need to do is have some good thyroid tissue to put under a microscope to determine for sure.

I would guess if there is any chance of cancer, the entire gland is getting taken out. Docs don't want to mess with the C word any more than you like dealing with it.

I am not sure if there is a relation betwen cancer and hashis. Good question. I do know that Hashi's is VERY common and is one of if not the first leading cause of thyroid problems.

Can someone with a perfectly healthy thyroid just get thy ca out of the blue? Good question. I imagine its possible.

However it turns out for you, the one thing you can be most positive of is if they remove your entire thyroid gland, you will never have to worry about thyroid cancer again. Good luck to you. Please let us know how it goes for you.

Tavish
June 7th, 2008, 11:39 PM
Endocrinologist and I talked about another FNA and will see what the surgeon says too. I read that about 10% of FNA's are inconclusive and another 5-10% are suspicious. THe thing is that a FNA is only as good as the sample obtained...and they can miss the right spot even if still getting the nodule. Everything I read said that suspicious and 2 inconclusives warrant surgery.

I will ask the surgeon too about doing a frozen section while I am in surgrey, but again, that is just a preliminary look at part of it, and is not definitive. My friend has breast cancer now and her frozen section indicated clean margins but further pathology found 3 spots within the tissue that were cancerous but not evident on the frozen section.

I'll also be asking the question about removing the whole thryoid vs the left lobe. But I think they don't want to remove the whole thing unless they have to.

Oh well, I guess I have a few questions for my medical team. Thanks for your input!

Lori