Nervous

Hello-

 

I'm new and have been reading through these post. It may be a premature, but I can't help myself and this is probably more of a vent than anything. Last fall I noticed my neck looked large, but  thought it was my imagination, so I never got it looked at. Two weeks ago I went in to see if I had strep. The doctor noticed a lump in my thyroid and ordered an ultrasound. The ultrasound showed a single solid node that 3.8x2.2x2.2 cm. I saw an endo and he ordered an FNA and chest xray. I have to wait a month for the FNA. I'm nervous as can be. Is this node considered large? It's visible just by looking at me. I have experienced occassional loss of my voice to where I feel as though I'm constantly clearing my throat, my throat hurts, the lymph node on the same side is swollen and occassionaly my ear aches. Is this all related? My doctor said that if it's not cancer that we could monitor it, but it would eventually need to be removed. Should I do that sooner or just wait and see? I'm frustrated that I have to wait a month to have this biopsy, but I get the results immediately. I'm just so overwhelmed by everything I read. I know its only 5% chance of being cancer, but some of my symptoms point to the more likely to be cancer side. I will add all my blood test were normal. Also, what will the chest xray show? He said it was to make sure it wasn't pressing on any of its "neighbors"....anyone have it pressing on something else and if so what? Any thoughts or words of wisdom. Thanks.

I'm sorry that you are going through this scary time of uncertainty.  I was just recently diagnosed with Follicular Variant Papillary Carcinoma, less than one week ago.  It all started out with the discovery of a nodule, very similar to your story.  My nodule was measured on ultrasound as being around 3cm.  -- also similar to yours, however you could only see mine when I swallowed.  If it hadn't been for my instistance, my general doctor did not see any reason to proceed any further at that point.  I was not able to just live with it... so she sent me for a nuclear scan.  The scan was covered by my insurance, but was likely very expensive and not a typical procedure.  The nuclear scan revealed that my nodule was 'cold' meaning that it was nonfunctioning.  She told me that they typically remove cold nodules because they can be malignant.  At that point I decided to head to an endo for further direction.  ***Here is where I think you might be getting a bumb deal -- my endo was able to schedule my FNA biopsy for a week later, and if he hadn't been busy that day, he would have been able to do it that same day during my appointment.  My sister had seen the same endo the year prior for a similar nodule and she was insistant that they do the biopsy right then and there... which they were able to do.  I think it might just depend on where you live (regionally) -- wether your endo is equipted to do the procedure in his office, and the matter of what the endo's schedule is like. 

 My FNA results came back as a follicular lession which could not be ruled out as benign.  It was suspicious.  So surgery was recommended.  I had no other symptoms, just the nodule.  So, I had the surgery, a sub-total thyroidectomy, and then I got to wait for my results.  It took two weeks and one day for them to get the results back.  What took so long was that they sent it out for a second opinion/consult to U-Penn, I live in Oregon.  Apparently the pathologists here had some reason to believe that the nodules was papillary.  The professor at U-Penn actually did several treatments to the slides and was able to confirm it was a follicular variant of papillary carcinoma.  So, now I am scheduled to have a second surgery on July 22nd to remove the remaining half of my thyroid, then 30-50 days later I will have ablation treatment/RAI scan....

 I think in your case, your doctor might be doing a chest xray because he might find that as a way to rule out if there is anything spreading into the lungs.  That's just my guess, not to scare you more.  Its just that when I express concerns to my endo that it might have spread elsewhere... he trys to reasure me that if it has spread, its not likely to be anywhere but the lungs (as if that's good news). 

Well, don't hesitate to post any questions.  It takes a while to get a response, and if you don't get a reply, try posting it again but with a different heading.

Best wishes, Fibromom 

Thanks for your response. My endo does not do the biopsy. He is sending me to a specific doctor to have it done. It's his availability that isn't until the 28th. I actually got lucky getting in with the endo. He is booked out to August, but had a cancellation. I hate this waiting. I was scheduled to have a nuclear scan (ordered by my PCP), but the endo said that it wasn't necessary since my blood test were normal. I think I will keep calling the radiology center where the biopsy is done and maybe the doctor will also get a cancellation. The chest xray is a walk in appt, so I am having that done on Monday.

Hi!

Don't worry too much! I just had my thyroid removed 6 weeks ago.  I'm fine so far.  But I wonder why they are waiting so long for the FNA? I got mine as soon as possible.....and the results the next day because it was cancer (it's not a 5% cancer risk as you were told..it's 18% and on the rise my surgeon said. No one knows why. I did NOT have any symptoms and mine went beyond the thyroid into the lymph nodes (don't worry, this is the only cancer that is NOT a big threat if it goes beyond the thyroid gland) I lost 2 parathyroids because they were stuck to the tumor....I was shocked because of the no-symptoms. Mine was found by accident via CT scan of the neck for another reason.  BUT...see if you can get the FNA sooner. And if not, why not? If it's the doctor's choice or your insurance?   I'll having the RAI

scan done soon.  Oh..they thyroid surgery was virtually pain-free but you will have some swelling the first two days but do this...use ICE packs.  I had more bruising (some do and some don't) and looked like I got a hickey from King Kong when I had the FNA. And I felt like I had the mumps because I had swelling on the side of the biopsy. But some people do not have ANY swelling...so you see, it's all a matter of person to person.  Little swelling after the sugery. Not as much.  Oh..my incision is ony 2 inches long and along the crease in the neck. Don't get a surgeon who doesn't do at least 150 of these a year. There are many specialist. Oh..one more thing..I did not have general anesthesia. I had a nerve block with IV sedation.  Didn't feel a thing and didn't remember a thing. Great surgeon in Neptune NJ.  Hope you keep us in touch. Please! WE DO CARE!!! We're family now!  MissCyndie

Hi, Docs don't seem to rush with thyroid cancer. It is supposed to be an extremely slow growing cancer. My nodules have been watched for 3 years (FNA back then was negative) and the growth in the 3 years was minimal. Although, we as patients want an answer right away and have it taken care of immediately, a month shouldn't make too much difference medically. Then once you get the results, if you need a surgeon, you are going to have to get an appt with him/her, then get on their surgery schedule. Once my surgeon said he would take it out, it was another month waiting for that. For your piece of mind, hopefully you can get on a cancellation list and get moved up. But if you can't and wind up having to wait, if it is cancer, a month or several really shouldn't make a difference in the treatment. I had an FNA (inconclusive for pap cancer) in early June 2009, a surgery end of July, a second surgery end of September ( he only took one side out the first time), then RAI in the beginning of November since I had a trip scheduled in October. ((((Hugs)))) Take care and good luck to you!

I would not wait -- I would push to try to get things done sooner.

I have just been diagnosed wth stage 3 papillary -- not in lymph nodes, but minimal extension beyond the gland.   My original endo kept telling me there was nothing wrong with me even though I had neck pain, trouble swallowing, GERD and throat clearing all the time.

I finally got fed up and went to another doctor  - had biopsy within the week and surgery 3 weeks later and low and behold I am stage 3 already!   Not to scare you, but I do feel that if mine had come out 6 months ago, when I first complained of symptoms, I would be stage 1 -- my tumor was not large 1.3cm -but it grew slightly past thyroid --

 

hi again, In response to your doc not thinking a nuclear scan would tell you anything because your levels/blood work were normal.  My blood work has been normal the whole time as well, but yet my nuclear scan showed 'cold' and.... low and behold I do have papillary thyroid cancer.  So, they try and tell you 'well your levels are fine' but that really doesn't mean much.

Goodluck, Fibromom

I agree you should have the uptake scan (nuclear), it is one of the diagnostic tools, I also think you should fine a different doctor if at all possible, even though this is the "best cancer to have" it is still cancer.

 My doc found my nodule in a routine physical, I felt nothing, had zero symtoms, he ordered a sonogram and uptake scan immediately, had to wait 30 days for the uptake scan, becaues I had to be off my thyroid meds for 30 days prior to the scan, had the somogram twa days after doc felt the nodule.  The ENT my doc recommmended decided to treat very aggressively, no FNA, straght to surgery because of the size and location of my nodule , it was also a "cold" one.  They did a partial thyroidectomy,  1/24/08 lo and behold, foru days later my pathology came back bad, had the second surgery 2/7/08.  Had the RAI on 4/7/08, and the WBS on 4/22/08, a clean scan. I am being restaged right now, have my finger crossed.  I had follicular carcinoma, stage II.  This kind can spread to the lungs, bones and brain, but it is very unlikely.

 

All of my doctors have been extremely optimistic,they do take it weriously, but do not want me to be overly worried, they constantly reassure me.  They are all wonderful, caring, and I totally trust them, this has been very important aspect of geting through this.  All of them have been recommended by my primary care, and internal medicine specialist.

 

If you are in North Texas, I would be happy to recommend a good doctor.

Hello. I was diagnosed with papillary thyroid cancer a couple of weeks ago. I went to the ENT because my glands kept feeling like they were swelling. He noticed a lump on my thyroid and ordered a ct scan, ultrasound and FNA right there. The next week I got the ct scan and ultrasound done on a tue and the fna on a thursday. The following Mon I got the results. I was almost certain it was papillary. For one, the pathologist that was in the room for the FNA mentioned it looked suspicius for papillary and also, I had all the symptoms - a buldge in my neck, hoarsness here and there and my lymph nodes swollen a lot.

 

Once the Dr. gave me the news, he told me this 100% cureable and not to worry. He also said, the cases he's seen - that 50% come back as cancerous ( I guess because all the symptoms I had). This Dr is good. He does about 75 of these surgeries a yr. But I hear , better off gettting someone who does more than this!!  Luckily I have a great connection with the Chief of the Head and Neck at Sloan Kettering in NYC. He did surgery on my father-in-law (smoking- neck cancer) and he is one of the tops in the country. I meeting him July 21 and I think my surgery will prob be sometime in Aug.

 

The main thing here is keep your head up. I was orginally really really nervous, but after reading and listening to my Dr I know this is very cureable and basically one of these things that I have to deal with in life. I beleive after the surgery I shouldn't have any problems and it will feel like a big weight off of my shoulders when it's all done! Good luck