Newly diagnosed with thyroid cancer and have 2 main concerns

Yes, FNA done. Papillary Carcinoma. 🙁
Trying to contact surgeons to get appointments. Meeting the first one later today.

I am very thankful for all the information you all have shared. It's really helping me make a lot of the decisions.

Well, I got the news yesterday that I never expected to hear. My nodule was benign! The pathology report was sent directly to me and I read it over and over again to try to understand it. I saw that one genetic marker (HBME1) was positive, so I assumed that meant I had cancer. A little while later, a nurse called to say "Good News" and I was in disbelief. According to my FNA, I had "Suspicious (Bethesda Category V) for papillary carcinoma, and even though I read that the "risk of malignancy is 60-70%," I assumed mine would be malignant. Thankfully, I was wrong. Needless to say, I am SOOOO glad I opted for a lobectomy and not a full thyroidectomy.

@cocha - Do you know what Bethesda category your nodule is?
@lise01 - Any idea when you'll get your path results?
I'm still planning to follow up with you (if that's okay), because I care how things turn out for you both. Having this little group was a great support for me and I want to be supportive to you too.

Nan

I am SO happy for you! That's amazing! And so glad that you didn't have your whole thyroid removed! This really reinforces my decision to just go for the lobectomy as well. I'm sorry you had to go through all of this -- but what a wonderful outcome.

Aside from the biopsy results, I think they can tell quite a bit from looking at it. My surgeon/otolaryngologist hasn't even suggested the possibility that it could be benign (and he is one of the top thyroid surgeons in the country, so he's seen a few). Mine has irregular margins, microcalcifications ... basically all of the features you'd expect from a carcinoma. I'll be ecstatic if it turns out to be benign too, but not expecting it. Do you recall if they described any of these features of your nodule?

He also told my mother, while I was still in recovery, that it was a totally encapsulated, unimpressive little microcarcinoma, and that had they not found it I could likely have lived out my life without any issues. So as far as pathology goes, I'm just hoping that it's just common papillary cancer, and that I can just start moving forward too. He told me it should be about a week to get results, so hoping next week.

So did they say what's next? Assuming they are going to check your remaining lobe's function soon to make sure you don't need any supplementation?

@cocha any updates yet?

Thanks @lise01

I have a follow-up phone call next week, so I guess I'll learn about next steps then. I'm sure I'll have a blood test to check my thyroid function now that I only have one lobe. I think I lost a parathyroid gland during surgery, so I don't know if that will affect anything.

By the way, when my endocrinologist did my FNA, he saw many microcalcifications, and my original ultrasound showed ill-defined margins, which is why it never occurred to me that it could be benign.

Let me know when you hear more. Until then, relax and know that whatever happens, you'll be fine in the end.

Congratulations Hopeful23!!! I am hopeful that the medical field continues to find new ways to diagnose before someone has surgery.

I couldn't agree more. While of course I'm thrilled to hear my nodule was benign, I wish I didn't have to lose half my thyroid to find that out. How are you doing?

No news. Bloodwork has been “different” but endocrinologist doesn’t think any of it is an issue. I just started with this new endocrinologist so I guess it’s a wait and see thing. I’m still having side effects that could be due to level of Synthroid, thyroid or some other cause…. another wait and see situation. ( the sudden. Bouts with extreme fatigue are hard to deal with).
I have blood work and ultrasound in 2 weeks so we’ll see. Thanks for asking.

That is great news @hopeful23 !! Hope you continue to feel better!

In my case the FNA biopsy report says it IS carcinoma, and not "suspicious for". No Bethesda category has been mentioned. So it does not sound very good I think. From zero health issues ever to carcinoma directly feels unreal right now.

@lise01 hope to see a positive outcome in your case as well!!

Yes, please stay in touch both of you. This has been a wonderful support system.

Hey, just. checking in. I also hope that you're continuing to heal and get answers, hopeful23 .

I totally get it @cocha -- it's been 4 1/2 months since this process started and it just feels so unbelievable/unreal sometimes. I keep having to remind myself that the prognosis for these papillary cancers is sooo good. It's just so fatiguing, all the waiting and weighing options and waiting more ... The surgery wasn't bad at all for me -- the biggest thing was just feeling tired and a cough I developed from, we suspect, from the intubation.

My pathology came back and it was confirmed to be a .7 x .7 x .9 papillary microcarcinoma, the common variety. So that is good (if it has to be cancer). Unfortunately, they took two small lymph nodes and found a tiny bit of cancer in one of them in the central compartment involving a parathyroid gland, so it spread outside the thyroid, which I guess is not uncommon. So now we have to decide if I need more treatment. I am going to see my surgeon next week and have a bunch of questions for him -- like how do they know that they found all the lymph nodes that have become involved (other structures around the thyroid) ... if getting rid of the rest of my thyroid might reduce the chance that this cancer could recur ... etc.

Again, I think the worst part of this is the waiting and not knowing when, and how, I can finally feel some confidence that I am cancer free.

What's next for you @cocha? Have they told you how they would like to proceed?

Lise

Meeting two more surgeons next week. Let's see what they say.

I am sending healing thoughts your way @lise01!! Hope it all turns out well eventually!