My endo did a FNA and one of my small nodules came back as suspicious. The endo said there is a 75-80% chance of it being cancer and my whole thyroid needs to be removed. Well despite my normal hormone levels, I've had a very large goiter and a whole lot of seemingly hypothyroid symptoms for over a year. I've just felt like crap. Anyone else with cancer have this?
So I've scheduled my surger for early Feb. My mother insists that suspicious biopsies only come back as cancer after the thyroidectomy, only 25% of the time. Ok so is my endocrinologist lying or is my mother lying? Mom says I'm ruining my life by having it removed and I need to visit her endo (the most cautious wait-and-see doctor alive, apparently)
Yes it would suck if I had it remove for nothing, but I do have this lump. I have trouble breathing and swallowing now. Mom says I'm just being dramatic, but my symptoms first began as shortness of breath over a year ago.
It really depends on your path report, what types of cells, and why they think it's suspicious----in my case, they actually found pappillary cancer in the sample, which isn't that common.
Usually with follicular, they just don't know until you take it out, and see if it's encapsulated or not---so you really have to get it out because it's the only way to know---I'm not so sure about your doctors statistics, but it really depends.
Your endo isn't removing it? I'm sure it's an ENT---make sure it's one with lots of thyroid experience, and that doctor will make the call in terms of how much to remove, etc-----I had no symptoms from my thyroid cancer, but it sounds like your thyroid isn't working so good anyway, so getting it removed is not going to make things feel worse.
Consult an ENT. My mom had a suspicious lobe and it turned out to be precancerous growth that had taken over one half of her thyroid. The removed that half and left the functional half.
There is a 10% chance that a nodule is cancerous statistically. If you have a suspicious finding that chance increases. I do not know if it goes as high as 75-80%, but 25% is a low ball estimate. If you have a suspicious finding most studies say there is a 40-60% chance that it is cancerous. You can be at increased risk if you have had certain chemical exposures of a genetic predisposition toward cancer. Your Endo may be taking in additional factors.
Given the results I would at least consult with one or more ENTs that are WELL versed in thyroid removal and monitoring. The ENTs may be able to look at your scans and biopsies and give you a different perspective. After all an ENT is normally the one that performs TT and PTs and as a result would have better intuition in whether a nodule is suspicious physically through growth pattern and structure in addition to the biopsy findings.
We might be able to give you better advice if you post your actual ultrasound biopsy report findings here. There is a very small chance.. like 1% that a cancerous thyroid nodule turns out to be REALLT bad. In most cases you have the thyroid out. You get an RAI and regulate your thyroid with pills. MANY do this every day and you can live with out half or all of your thyroid. My mom is one of five sisters. They have 2.5 thyroids in total. I have a single nodule that is suspicious due to family history, but mine is only 9 mm x 9 mm x 9 mm. Because of extensive scaring due to my rampant Hashi's and the fact this little bugger stalled in growth when I was placed on T4 medicine my ENT is doing the look at it every 6 months and when it is big enough to poke.. so be it. If the nodule comes back suspicious or malignant.. out DAMN SPOT! It is sad but I do wish it would grow a smidge and give a suspicious FNA result. I want that lump in my throat out!
If we learn by our mistakes, I am working on one hell of an education.
I would Like to add my story. I had a thyroid nodule that was found by way of an ultrasound of a lymph node I was having checked out. The thyroid just happened to show up & so did a few nodules. It was a total surprise because I had never had any thyroid trouble in my life ( well at least I never thought I did) they did the usual follow up a thyroid scan, CT scan and then the final thing was a FNA of the nodule which came back as inconclusive but didnt really say either way. THANK GOD my Dr. was an ENT surgeon who was aggressive enough to say to me I think we need to schedule a partial thyroidectomy & during surgery send it to path for a Dx. Well, it WAS cancerous, and it was on both sides of my thyroid. So had I just waited it out or just left it in there.. Id be leaving cancer in my body! The whole thing was such a shock & it hasnt been an easy ride (just had the RAI last Fri) but I am so glad I had it out. I really don't trust the FNA biopsies to tell it all. There really is no way of telling if it is cancerous until the surgery was done. Had the total thyroidectomy. My sister has nodules too and I just dont understand the concept of watching them . I am glad I had the surgery.
I found a great thyroid surgeon with tons of experience doing thyroidectomies. I am seeing another Endocrinologist a couple days prior to my scheduled surgery for a second opinion, so if he says NO way do I need surgery, I'll call it off. If he says, eh maybe, wait and see, I'll probably stay with the surgery path. My mom had a goiter that later turned out to be hyperthyroidism. She was "Cured" by some sort of Radiation. It's so not the same thing as cancer, yet she thinks that she is an expert on the topic. She was all offended that I spoke with my friend's mom instead of her about the topic. I was like mom she had CANCER, you did not. Mom just wants to control my life.
Went for a FNB for a Goiter. Results came back after 4 swipes during the FNB, "Undetermined". Couldn't determine that it wasn't Cancer and couldn't rule it out either.
Because to the size of my Goiter it was suggested that I have it removed anyways. So I met with my surgeon. He said I have 70% chance it WASN'T cancer. I had to chose between a partial (just the goiter) or a TT (everything). Based on the percentage and complications from the surgery I aired on the side of all is good and went with the partial. My pathology came back and it is Cancer. A rare one at that! (Hurthle Cell) With something like a <1% chance of getting Hurthle Cell. So what does that mean? You guessed it!!! I got to go back in for a TT to remove the remainder if my Thyroid one month later.
The only advice I can offer is if you THINK you want a second opinion then get one. Maybe get another FNB done if you would like. Just keep in mind that during a FNB they may not get any thing that they are looking for. Kinda a needle in a hay stack.
I am 6 wks post surgery. I too had nodules and an fna done....I also experienced difficulty swallowing certain types of foods and medications and with breathing at night.
Long story short: I had papillary cancer of the thyroid and six lymph nodes.
I had a very experienced doctor [high volume thyroid surgeon] who did a great job. I had a total thyroidectomy with removal of lymph nodes and 2 of the four parathyroid glands. I'm now on Synthroid, having no problems with it...thank God!
My Endo just increased my dosage from 0.150mcg to 0.175mcg because my THS level and T-3 and T-4 could be lower.
TSH=1.6 it needs to be 0.4
T-3 = 135 which I'm told is mid-range; could be lower
T-4= 1.6 could also be lower
I wish you the best with your surgery or whatever you decide to do. Remember, thyroid cancer is one of the easiest to cure; but the least talked about.
Last edited by tuscansam6; 01-16-2009 at 10:34 PM.
Did you not have to have the radioactive iodine/hospital isolation treatment? Had mine removed (papillary cancer) on Oct 10 and had my scan on Wed and am awaiting admittance to hospital for treatment. Have gained weight and could not do 50% of my daily workout today. Very tired and some muscle cramping. Does this sound typical to anyone?