Papillary carcinoma - long term follow up care with endo or oncologist?

[AJ1234]

I had a TT on 2-3-10 due to papillary carcinoma.  The tumor was 1.2 cm and I had RAI (100 millicuries) on 3-15-10.  Going hypo was tough but I'm feeling better every day.  

My ENT surgeon referred me to an oncologist right after the cancer diagnosis.  He said that the oncologist would be able to monitor my labs and oversee my long term care.  I saw the oncologist a few weeks after surgery and really liked him.  He said I was in the gray area of whether or not I should have RAI and he could go either way with it.  He doesn't do RAI so he referred me to a radiation oncologist to get a 2nd opinion.  The radiation oncologist set up my RAI and told me that long term follow up care should probably be with an endo so he referred me to one that I've heard good things about.  I saw her a few weeks ago and really liked her.  She switched me from Levoxyl to Synthroid and ordered a bunch of labs.  In the meantime, I had a follow up appt. with my ENT surgeon who wasn't very happy with the radiation oncologist because he referred me to an endo.  He said that the local oncologist should treat me long term and the radiation oncologist was out of line with his referral.  My ENT said the radiation oncologist should have sent me back to my local oncologist.  I understand where he's coming from but I'm also concerned that there may be some politics going on or history that I'm not aware of.  

I have another appt. with my local oncologist on Monday and at some point I'm going to need to make a decision.  I'm sure he is going to want to run the same labs I had done a few weeks ago and I'm going to have to explain how I got on Synthroid from Levoxyl, why I went to an endo, etc.  I like the staff at my oncologist's office better and he's in my home town.  The endo's nurse isn't very friendly and took 5 days to call me back plus her office is an hour away.  However, once I met one on one with the endo, I really liked her and she mainly treats thyroid cancer patients.

I have another follow up appt. with my ENT in 6 months so he can check my scar and discuss continued calcium issues I've been having and I have no doubt it will come up again if I keep going to the endo.  He has been so caring through everything; I was truly shocked at how blunt he was when this came up.  He actually said that the radiation oncologist was unethical in referring me to the endo.  I feel like there's more to this than just me but I almost feel like I've done something wrong here...I like them both and I just want the best care that I can get.  Any advice?  

[utahmomma]

I've been to both an oncologist (for possible lymphoma) and endocrinologist (for recurring papillary carcinoma and RAI).  The endo is the expert for thyroid cancers - even my oncologist said he doesn't treat thyroid cancers and refers to thyroid specialist endocrinologists (most endos deal with diabetes).

Stick with the endo - they are the expert at thyroid labs.

Best to you

Utah
papillary carcinoma '03, second surgery '04, recurrence and RAI '06
three sisters with papillary carcinoma (including one with three recurrences/RAI)

[hypoman]

I had the same things going on.  Same kind of cancer and same size tumor.  My endo and oncologist argued about whether or not to do RAI.  The guy who did the TT may just think he did a good job of getting it all-but the oncologist (radiation or not) will be worried about cancer spreading.  With me they did the RAI-there are no side effects for most folks and you are going to be super hypo for a while anyway.  In my case, they argued so long that I was already started on thyroxine, so I had to go off of it and it just lengthed my "recovery".  I still have a TSH of over 60 at 7 months after TT.  They had to go extra slow with me cause I had some heart issues-I hope they can bring you back to normal faster.  Good Luck

[MANmom]

I had the same (papillary cancer, 1.5 biggest tumor, 100 mc RAI last july) and I am now only seeing an endo...I never did see an oncologist.  I take blood tests every eight weeks, but now that I am level I will go three months.  I am getting ready for a Thyrogen injection test in June  to see if I get a thyroglobulin spike to check for recurrance.  Hope that helps.