Thyroid Nodules etc

[Anonymous]

I found an old thread from 2009 but am wondering is anyone is dealing with FNA's, suspicious nodules etc at the moment. I have to have a third FNA done next week (along with gene testing if need be?) as the last one came back 'atypia of undetermined significance'. Any similar stories?

TIA!

[Anonymous]

I have had FNA done twice. First time the result came back benign. 5 years later I had my 2nd FNA. They found suspicious cells. Doctor suspect they are cancerous. I decided to have total thyroidectomy performed. The biopsy came back cancer cells in 7 out of 10 samples. After a few months, I had radiation (I-131) done.

[Anonymous]

I must have had 3-4 FNAs and in the end decided to get my thyroid out because all but one of the results showed atypia. In the end the modules turned out not to be cancerous but I don't regret doing the procedure. I had Hashimotos and was on synthroid anyway.

[Anonymous]

I realize this is rather old, but am looking for others who have had their thyroid or part of their thyroid removed. I have had a large multinodular goiter since my early 20s and am now 40. One lobe is a large 6cm nodule. The other has three small cysts/nodules. I am having surgery this month. The nodule is quite large and stable, and I have had two negative FNAs, but most recently one that was "indeterminate" because they couldn't get enough of a sample. I found that hard to believe, since they jabbed me 6x and it's a large nodule.

In any event, yes, I have dealt with this for 15-20 years, OP, and it is not fun. I am having surgery so I won't need to keep monitoring it.

Not looking forward to the possibility of replacement hormones.

From what I gather they say multiple nodules is better than a single nodule.

[Anonymous]

Anonymous wrote:I have had FNA done twice. First time the result came back benign. 5 years later I had my 2nd FNA. They found suspicious cells. Doctor suspect they are cancerous. I decided to have total thyroidectomy performed. The biopsy came back cancer cells in 7 out of 10 samples. After a few months, I had radiation (I-131) done.

My partner went through the same experience. A few reflections (hope this helps someone out there

-to prep for the I-131, you NEED a 100% iodine free diet. As in: NO iodine. at all. That is a LOT harder than we imagined; almost everything contains "sodium" or "salt" and you have no way of knowing if iodized salt was used. IIRC, most Kosher food requires Kosher salt, which is not iodized.

Suggestion: enlist a network of friends to help prepare meals/foods; for us that involved the MIL who worked really hard preparing iodine-free bread and other foods.

-Washington Hospital Center is one of the few therapy centers for I-131. The support staff was TERRIBLE. They completely botched the iodine-free meal, which was critical to the treatment's success (we were lucky that it succeeded - despite their incompetence.

-Washington Hospital Center also botched the post-treatment showers: you have to shower every 30 minutes for 24 hours to wash away the radioactive I-131 (which goes down the drain into the sewer. Gee). There was NO hot or even warm water in the treatment room! Cold showers every 30 minutes. Imagine.

The I-131 is a lot more "hot" than many believe; we decided to have my partner stay with an older (beyond child-bearing age) female co-worker for a few weeks just to make sure the kids were safe. The research out there on the topic is inconclusive - at least by our reading of it (some folks disagree. We took no chances). It does have a short half-life though.

Good luck. Also, please remember that this is one of the cancer types with an excellent prognosis IN MOST CASES (but not all) and if its caught early. Five year survival rates are 97.8% in the United States. IIRC, there are 4 types of the cancer; 2 are most common and have the best prognosis; the other two are far more rare and more deadly.

One more thing: as a precaution following I-131, the endocrinologist will put you on the highest possible dose of replacement synthetic hormone (Synthroid). Those high doses have their own side-effects, like essentially making you into a hyper-thyroidic person; google it to see the effects; but they are deemed less risky than the possible return of the cancer.

[Anonymous]

Slightly off topic question- a CT scan showed I had thyroid nodules but my GP was 100% unconcerned. How do I know if/when to get them checked again to see if they have grown? I'm 43 with no other known thyroid issues.

[Anonymous]

Hi PP,
I get a sonogram every 6 months then it was a year. The size did not change or it is under control.

[Anonymous]

Anonymous wrote:Slightly off topic question- a CT scan showed I had thyroid nodules but my GP was 100% unconcerned. How do I know if/when to get them checked again to see if they have grown? I'm 43 with no other known thyroid issues.

Get a blood test on your thyroid function. Most nodules aren't cancerous:
http://www.webmd.com/women/tc/thyroid-nodules-topic-overview

[Anonymous]

Anonymous wrote:Slightly off topic question- a CT scan showed I had thyroid nodules but my GP was 100% unconcerned. How do I know if/when to get them checked again to see if they have grown? I'm 43 with no other known thyroid issues.

Me too. My GP isnt concerned at all. I have several small nodules.

[Anonymous]

My endo isn't doing a FNA on my one nodule which is about 1.1 cm. Will continue to monitor with ultrasound. Is that normal?