I hope that I am allowed to ask for Reece, since she, too, has had thyroid cancer and answers all my questions....Hi Reece, I have a question about my follow up appt. that i had with the endo a few weeks back, 6 months since my RA-I. I told you he said all the #'s look good, but I don't think I have read about ANYONE on here NOT having a WBS for follow up, maybe not at 6 months, but I specifically asked him about 1 year follow up and he said he checks the TG and if it remains at 0, no further follow up is necessary. He said they used to scan people every year and now its not necessary.......What is your educated opinion about this? I would be more concerned about him if I didn't keep getting the "he's the best in the state" speech from anyone who knows him. We went to Fl for spring break and my girlfriend's neighbor was in the condo complex and she is a pharm. sales rep and calls on his office, she asked who I was seeing, and I told her, and she exclaimed,"you're so lucky, he is the BEST!" I realize I need to have faith in him, but seriously, doesn't everyone have a follow up WBS? Concerned..
I had a long discussion with my endo. about follow up. I had a one year later wbs, which was clear, and I asked about follow up then.
He basically said that there is no standard, that different endos do different things, depending upon the size of the tumor, and spread, etc. He said that the costs and inconvenience of wbs is so high, that ultrasounds are being used more in more in combination with tg. This seems to be a standard of some sort.
The plan in my case, is, ultrasounds regularly(he has one in his office), tsh regularly (to make sure I'm supressed), and now two years after my clean 1 year scan, I'm having tg tested. There is a chance I will have a wbs next year, because he said something about every three years or so.
In terms of thyroid cancer, the statistics are so good, that he said as long as follow up is being done, it's likely that anything will be caught. So I think if you believe your doctor is good with thyroid cancer, and he has this philosophy, it's cool. If he did see any change in tg, he'd likely send you for a wbs anyway.
There have been people here that have also been sent for pet scans (which tend to find cancer through glucose tracer), so I think it's all over the place. The key is that the doctor has a philosophy that makes sense, and then go with him and trust him. However, if you feel uncomfortable, I'm sure you can ask him to send you for one at some point.
I just wanted your opinion, I really wish it was "standard protocol". I was just reading some articles on follow up and there certainly isn't a good consensus. I am going to just go with it for now and when I see him in 6 months again, I will ask about his reasoning. I see that most also use the Thyrogen shots for follow up to have a stimulated? TSH,Tg, right? I did not stop my meds at all for my Tg. One more question, does it seem like 6-7 months is too long for me to see him again? I probably should enjoy it, finally not seeing a doc every few weeks??!! My TSH was bouncing around a little bit, too, even though my dose has been the same. Was 0.18, and then 0.09, what if it goes even lower? Then, i ASSUME I would feel it with heart palps and other symptoms, right? He did say my hands were a little shaky when I saw him, but not too bad. Otherwise, I'm doing ok, can't really remember what normal was anymore?? So, is 6-7 months ok to have another TSH blood test and to see him again?
I know, it's so confusing when everyone does their own thing, you don't know if you are doing the right thing.
My endo. actually sees me every 3-4 months. I think we both like that---I'm so paranoid, every time my neck gets achey, and he does ultrasounds, and I know everything is really okay---since I had a spread to the muscle in front of the thyroid, but 6 months is probably more the norm.
My TSH did move in the beginning, now it's pretty much at the lowest.
My TSH is at .04, and I feel pretty much okay, I think I'm a teensy bit hyper, but nothing that makes me feel unwell---I think I just have heightened physical sensitivity, I don't think my hands are perfectly steady (thankfully, I'm not a surgeon!), but otherwise, I don't notice too much, and I pretty much don't pay too much attention to symptoms any more.
I don't think they'd give you thyrogen ($1000) for just a tg, I think they'd do a scan along with it at that point (which means you don't have to go hypo for the scan). I know that the tg is more accurate when you are hypo/thyrogen, but if you are just using it as a marker, as your doctor is, they will just compare it every time you have it and look for changes. I will get my results in 2 weeks, and I'm so nervous!
At your next visit, I would ask the doctor about ultrasounds. They seem to be the new thing in thyroid follow ups, and your endo's opinion would be interesting!
Thanks, Reece. I hope you have a blessed Mother's Day. I hope that your mother is doing well with her cancer diagnosis. My sweet mom died 6 years ago of pancreatic cancer, she also had breast cancer at 39.......young. Like I said before I HATE HATE cancer. I will ask about the ultrasounds, they are not any big deal, non-invasive, and the reassurance would be great. Great luck on your results....they will be fine, just like you reassure everyone on here, they will be fine..yours will be, too!! It is nerve wracking, though, isn't it? I guess we better get used to it cause I plan on being here a long time, which means YEARS of follow up, right??!! Good thing I'm not practicing my hygiene right now,who wants a hygienist with shaky hands?? Ha. BTW, My son is finally doing better, his headaches, etc. are improving, so that is the best Mother's Day gift I could ask for!! Thanks again for always being there for me, i appreciate it. HAPPY MOTHER"S DAY!!!