2nd and sometimes 3rd opinions are often necessary in these cases. If possible, find a surgeon who has lots of experience and has done over 50surgeries per year.
Ahhh. It sounds like you are on the right track now. It is a lot to process, I agree and I was the same way as you as far as loss of sleep. My GP even put me on antidepressant to help me sleep and to help bring down my blood pressure to prepare for completion thyroidectomy after I had thyroid lobectomy. I have to say that did not work at all. I was sick as a dog and unable to function after 4 days on it. Not for me I guess. I wish you all the best. I can only suggest that you must be a pest with your caregivers, let them know when you don't understand things, and keep asking until you do. If it does turn out that your pathology does show cancer, can I suggest the website thyca.org? It has tons of very good information as well as webinars from top medical professionals that explain the disease, and the treatment in a very clear manner. If your pathology is benign then I am so very happy for you, but you will probably have to continue following with your endocrinologist to keep an eye on that thyroid function. Best of luck in your journey!
Thank you again they did send the pathology out for further testing and I am seeing endo next week.. I learned my surgeon is young and somewhat new in the field. I am getting the second opinion at the top cancer hospital in my area... Thank you again I am just as confused with all the "if's".. Will up date you as soon as I know... As you can see it being 5am I do not sleep anymore either..
Hi again. I'm no doctor, but this seems really confusing. First of all, I don't understand how you can have inconclusive pathology on the left thyroid that was removed. I would think that slides would be sent out for additional path consults so that some sort of definitive diagnosis would be established. Also, if I am understanding correctly you have an intact rt thyroid with a 4 x 3 cm mass above it and fna of the mass has shown follicular cells? I really think you need to get a second opinion on any additional treatment that might be indicated or have another visit with the surgeon so that you are totally understanding about your ultrasounds, FNA's and surgery. Are you seeing an endocrinologist? What does he/she say?
Thanks for the response. When I had my original US it showed a 4cm by 3 cm enlarged lymph on my right gland above my right thyroid and I had a 1.5 mm by 2mm goiter on my left thyroid. My doctor decided to have the gland on the right biopsy at the same time my left side. The biopsy report said follicular cells in the right gland and the left thyroid was abnormal The surgeon decided to only remove my left thyroid and never took biopsy from the right thyroid or right gland. My left side pathology was inconclusive . I only have the original FNA report from the right side saying follicular cells. I am concerned cause nothing was removed. The surgeon felt the CT scan was more accurate then the FNA and he did not want to remove the gland. So how do I know the FNA report on the right gland was false.
Hi, just read your post but not sure if I understand. Your left thyroid biopsy showed abnormal cells and surgeon did left thyroid lobectomy. What were the pathology results for this. Was it cancer? I am not sure what the right clavicle gland is that you are referring to. Are you saying that FNA of your rt thyroid showed follicular cells? If the pathology on the right side is cancer, I would think they would recommend removing the rest of the gland.
Ok this is really confusing I hope someone can help. I had 2 core biopsy done on mt left thyroid and my right clavicle gland was twice it size and they did 5 FNA biopsy done. My left biopsy showed abnormal cells and my right clavicle 5 FNA showed follicular cells. My surgeon did a CT scan and only removed my left thyroid. I asked about my enlarged clavicle on the right and he said the CT scan showed nothing and the FNA over shot the gland and the follicular cells were from my thyroid. Now being a nurse I know if it over shot then it means my right thyroid has follicular cells? The surgeon got upset with me for questing him. I am still smart enough to know follicular cells do not just appear out of a gland that he said did not exist and even more if they over shot and hit the right thyroid doesn't that mean the right side has follicular cells? Just asking out there to see if I am being over worrisome? What would you do?
Thank you so much for your info, MANmom. I wish you continued good health, and hope they get everything regulated again. From what I am reading, they go by blood tests alone, but it seems that if they went by peoples symptoms people would feel much better. I know my hormone levels are perfect right now. They will probably shoot to duplicate that afterward, even though I have symptoms of intolerance to cold and hair loss. Good luck and thank you!
I am fine after two surgeries and RAI. My surgeries were Apr. 21 and June 9, RAI was July 27th of '09. After RAI it took about 16 to 20 weeks to regulate my hormones and get me on the correct dose. My first thyroglobulin test (checks for recurrance) was in June '10 and TG was undetectable. My second I just had in June, still way low, but he did do and ultrasound and found a lump, what he thinks is scar tissue. He noted it and will keep an eye on it. My endo then said I was on too much meds, so he lowered my dose (I am not happy, I felt best at the previous dose) However, that doctor is retiring (military medicine) and I will get a new doc soon. I feel alright for now, I am still having trouble losing that last 10 pounds, but I feel good. Hope that helps.
How did your consult go today??? My surgery is scheduled for August 19. I first found out about the nodules at the end of April. It took a week or so to see the PCP, another 2-3 weeks to see an endo, 1 week for their office to book the biopsy, 2 week wait for the biopsy, 5 days wait for the path. 2 weeks wait for the surgeon, and 6 weeks from then until the procedure. I don't know if that all adds up, but that's what it's amounting to. Like I said, this better not be malignant, and if it is, it better be Stage I. Hope your visit went well. I have had symptoms since February that have never had before. Tinnitus (ear ringing) that is really loud when there's no background noise, and something that feels like either carpal tunnel or arthritis around by thumb, and index fingers that is really painful. I am assured by both the endo and the surgeon that this has nothing to do with anything, but when I was googling how to relieve the pain I came across a massage website that said the nerves that control this area originate above the nipple on the affected side and under the clavicle...guess what else is located there????? Hmmm....
I have my surgical consult tomorrow. I too have waited 6+ weeks since I first found out about the nodule and 2.5 weeks since the FNA pathology came back. The stress is likely to kill me before the potential cancer will. Every single day I think about this thing getting bigger and spreading through my body. You are not alone. Despite all the assurances that thyroid cancer is "the good cancer" and "slow growing," I don't buy it for a second! When is your surgery scheduled for?
Thanks for your response. I didn't have the nerve to ask the surgeon how many thyroids he's done, but I know that he is the most experienced at them in the area where I live. How are you now after having your two surgeries? How far apart were they done? Did you have to have RAI and how did your docs do with regulating your hormones afterward? Are you back to baseline??? (Sorry for all the questions, but I don't know ANYONE who has had thyroid problems and so this forum is really my support for people who will tell the truth about their experiences!)
Thanks for your response. Have you scheduled your surgery? I have to wait almost 6 weeks from when I saw the surgeon. I have basically gotten over the shock of the whole thing, and I am determined to enjoy this time with a whole thyroid. This past winter, I didn't even know what a thyroid did, and now I feel like things might be a whole lot different without it! Hopefully everything will be benign, because the idea of sitting here for 6 weeks with a potential malignancy is kind of wearing on me, but, on the other hand, I don't really want to have the surgery at all so I'm in no rush! How about you?
I had two surgeries, my first one was basically to try to get rid of my hoarseness, we didn't think I had cancer. After the path report came back, I had three very small foci, less than 2 mm each. I had the option of NOT removing the other side, however I chose to have the second surgery. Glad I did, the big tumor was on the side they didn't biopsy. They went through the same incision both times, I hardly notice the scar. Both surgeries were very mild, easy to recover on both. My advice is get a great surgeon, one who does at least a couple thyroids a week, that way the odds of complications are better. The point is they can never really tell unless they strike gold on the biopsy or take it out and send it to pathology.
I'm in a similar situation and your doctor is right. With follicular lesions, the frozen pathology usually doesn't give a definitive answer. You must wait for the final pathology, which takes a week. At that point, if you only had half removed and the results are consistent with cancer then you must undergo a second surgery. I hate being in this situation since these lesions are usually malignant in only 20% of cases. I don't want my whole thyroid removed for no reason (I feel like a guinea pig), but at the same time I don't think I could handle the stress of two surgeries. The idea of one is stressful enough.