I would send the FNA slides to an expert cytopathologist to get a second opinion. I usually use Dr. Massoll at the University of Florida for this.
"suspicious" can mean a variety of things depending on who is reading the slides. If Dr. Massoll says suspicious, then it's about 70% chance cancer -- just to give you an idea of odds.
Sometimes surgery is needed to make a definite diagnosis and while thyroid cancer is often a slow process, I usually recommend making the definite diagnosis as soon as possible to avoid being one of the exceptions to the "slow growing" rule.
PS my thyroid TSH levels are normal. No other problems with it to my knowledge.
I had exactly the same situation in September of 05. I went ahead with the surgery. Not doing the surgery just wasn't worth the risk to me. I didn't want something to change between appointments to check it. They went in and removed half. They knew right away that it wasn't cancerous. I haven't had to take thyroid meds this whole time, but just had labs done and will start now. TSH is 6.2 and T4 is borderline. The half that they left in had nodules on it, as well, but they were very small. It was still functioning, so they hoped by leaving it in, I would be able to function without meds. The surgery was pretty simple and easy to recover from and a pretty easy decision for me. I know that most forms of thyroid cancer are easily treatable, but there is a very small percentage that is more aggressive and the prognosis is worse. The chance that I would have that kind wasn't worth the risk to me. My thyroid levels were normal, too. I'm sure you'll probably end up in the same boat I did, if you go ahead with the surgery. The question I had to ask myself was if I wanted to live with that hanging over my head every day. Good luck with your decision.
Just read your post and thought I could add my story - almost identical. My doctors weren't overly pushing surgery- the FNA results couldn't rule out cancer, but they just recommended keeping an eye on it. However, when my symptoms persisted (swallowing probs/heartburn-type feelings), they suggested exploring the options of surgery. The surgeon said anywhere from 5-20% chance it could be cancerous, and that it was up to me if I wanted the surgery (half or full lobe). I decided to remove my left lobe. Turns out it was cancer (and I also have Hashimotos). So now, I'm scheduled for another surgery to remove the other lobe, but I have no regrets. I recovered from the initial surgery very well and have been living with 1 lobe quite comfortably (no meds). If my thyroid hadn't been giving me these symptoms, surgery probably wouldn't have been considered, so, I'm grateful for having this condition!! Living with the anxiety of the unknown was not a comfortable option for me.
Best of luck to you!
I just had a total thyroidectomy last Friday. Basically no pain, no side effects to voice, parathyroid glands. I will need meds the rest of my life and I have to say I am sad, and I feel a distinct loss not having it at all, and wonder if I should have tried to keep at least half. I had nodules on both lobes and the largest nodule was biopsied with a finding of "folicular lesion" not benign, not cancer, just higher risk of cancer --20 percent. I struggled with the decision for 2 months and then just went for it after a second opinion. One doctor reccomended take out half, the other said remove it all. So much info on the web, was somewhat overwhelmed but read that 70 percent of time the half can't totally compensate and need meds anyway. Now I sort of wish I had tried to keep half, I am young and healthy, seems like it might have worked. BUT I don't know my pathology results yet, if it turns out cancer, I will be glad its gone. I did have some of the same concerns as you-- what about when the apocolypse comes and I can't get synthroid?? This is a pretty unlikely event, so like life, that risk seemed lower than 20percent chance cancer. Plus, like someone else's comment, always having that hangng over you.
I just had the same situtation. I found a nodule totally on accident looking for blocked salivary gland on CT scan. Fine needle biopsy, which I was CONVINCED would be negative, said it was undetermined, but could be pappilary cancer.
I just had the surgery on Thursday last week. They told me they'd take half of my thyroid, biopsy the nodule while I was on the operating table, and take it all if it was cancerous. I woke up without my thyroid. And, without the malignant cancer that I never thought could or would be cancerous, because the odds are so small with small nodules. It was totally incapsulated and had not yet spread to the lymph system.
I think it's worth the risk to get the cancer out. Find a doc who will only take half and have pathology done in the opperating room, and the other half if it's cancerous. There is a chance that the pathology will be inderterminate. In that case, my doc told me that he'd leave the other half in and wait for full pathology before having more surgery to remove any more.
For me, I have a 5 year old child, it was totally worth it! If I had let it go, because it might not be cancer, my daughter might not have her mother there for her in the future...
I have a small scar, and I have to have the RAI treatment in about 4 weeks. My body feels very odd and it's trying to adjust to the T3 meds my doctor gave me, but I don't have cancer anymore. And I can say it was worth it. Good luck making your decision.
Hi, i am in the exact same situation as lara sunny and you frankenmom. i am only 23 and am worried sick about what i should do with my thyroid. i tired to ask Dr. lupo my question for some time now but his box is also full.
Anyways, so here is my situation i have had a nodule in my thyroid for 4 years now and have been keeping a close watch on it, it was 1.6 cm and now 2.0 cm. I did blood test, ultra sound and biopsy on it every year. it has been benign every year EXCEPT this most recent one. The results came back showing "possible underlying follicular neoplasm may not be completely excluded". My endo doctor suggested surgery so after reading everything about the surgery and medication and SCAR i am so scared. I literally dont know what to do.
If you don't mind, can you please let us know your pathology test result and any advice for my case? thanks!
I am in the same situation, Monday half mine is going bye bye if needed they will take it all. They could not get what they wanted on my biopsy so surgery is the next step for a forsure diagnose.
Hi, I am only 28 and just had an approx 2cm nodule removed that came back after the FNA as inconclusive, suspicious of papillary cancer. I'm really just here to support your fear of the surgery and scar...as I was petrified. I went into surgery for 1/2 thyroidectomy, and they would send the 1/2 for a frozen section to pathology. I'd stay under for the results, and if cancer, then the entire thyroid would be removed. It turned out to be papillary cancer, and they removed my entire thyroid.
The surgery (although three times as long as expected) was fine, and I am absolutely AMAZED at how fast the scar is healing and how fantastic it looks. Most people don't even notice it's there. I know everyone's story is different, but I just wanted you to know as another 'younger' patient, I know how concerning the scar and everything can be...and it can really turn out just fine. Good luck with your situation.
I understand your concerns about surgery, but think you should have it removed if that is what your doctor recommends. My mother waited 5 years to have the surgery and it turned out to be a much more involved procedure because the cancer had spread to her lymph nodes by then. Luckily, the surgeon was able to get the cancerous nodes out as well and, with RAI treatments, she was fine.
However, I also caution you to make sure you have your thyroid levels checked regularly once you undergo surgery and let your doctor know anytime you aren't feeling right. My mother's cancer is now back after 13 years of being "clean" because her levels were not properly adjusted and she ended up with new growth on the small part of thyroid tissue the surgeon left in her. She'll have surgery again in a few weeks and hope they got it all this time. It is definitely worth getting it out early...even if it turns out not to be cancer, your peace of mind must be worth something to you. Thyroid cancer is curable if treated early and properly and taking a small pill for the rest of your life is a small price to pay.
I am writing this mostly because i came back from my first appointment with an endo, and i am very confused, and angry, and scared. I had a thyroid ultrasound done in august, because of a fluke lump that was felt by my doc. It came back as having found multiple nodules on my thyroid, and also on my parathyroid. now at my appt yesterday with this endo doc he asked me how old i was i said 34 .. without much more question his reply was we'll do another ultrasound in six months and see if there is change.. my concern first is that they had given me a symptom check list to which almost all applied to me, he didn't even look at it , i know he didn't because when i asked him if any of these symptoms would go away he asked " what symptoms". Now for the last ten years my doctor has always said that my thyroid looks enlarged, but my blood test always come back normal,although i know i don't feel right. my symptoms, heart palpatations , trembling, feel shacky ,heat intolerance, and cold intolerance , have trouble getting to sleep, and most recently having difficulty swallowing.. i feel like something is always stuck. family history.. my grama had her full thyroid removed a couple of years ago she had cancer. my aunt also the same thing.. now other types of cancer runs in my family.. Someone please give some advice...