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AM I BEING TOO UNASSERTIVE ON NOT INSISTING UPON SEEING THE TOP DOCTOR?

grateful1
Posts: 81
Joined: Jun 2010

My thyroid cancer has doctors scratching their heads and disagreeing and unsure what to do. I had a goiter for many yrs--it was benign, Then I found out in Feb of this year on the other--left side--I had a new nodule which a fine needle biopsy showed to be malignant--and a poorly differiated type--very aggressive. It was inoperable. They did a biopsy in April when trying to remove the tumor which came back benign. But the pet scan shows aggressive cancer. No one can agree on what to do. The endincrinologist wanted me to have iodine treatment but when I showed up the head of the nuclear dept said he didn't think it would help much and my tumor was the worst he had felt all year. Now the endincrin. is sending me to another top hospital which just does cancer. But when they called me as he had set up the appointment they didn't give me the top doctor--but rather his assistant. Should I insist upon seeing the top doctor--since I am not being treated at all. The pill the oncologist recommended was nixed because it had too many side effects--and the radiologist felt he couldn't proceed because my case wasn't clearcut. I'm gathering they see no help for me--whereas before I think they were just being careful about side effects.

nasher
Posts: 507
Joined: Apr 2010

in my opinion it wouldnt hurt to see the assistant first since the TOP doctor is probaly very busy and it may take much longer to get an appointment

Kinda curious how it is inoperable, I mean they removed my entire thyroid (ok 99%+ of it then iradiated what was left), is there some other condition that makes in inoperable? the first surgery (of 2) to remove my thyroid they took out the right side and a 7.1 cm tumor.

havent heard of the pill... but radiation treatment dose have many side effects and i have no clue how much more or less the side effects would eb being you have your entire thyroid still than me who had almost all of it removed prior to iradiation

you might call back the hospital and find out why they gave you the assistan instead of the doctor though. With the military health system for me I end up sometimes seeing 3-4 assistant or trainie doctors before i get to see the Top for that hospital. also some times it could be a week out to see the assistant but a month + to see the top doctor.

I wish you luck

grateful1
Posts: 81
Joined: Jun 2010

THANKS FOR YOUR REPLY. THE THYROID TUMOR WAS INOPERABLE BECAUSE OF ITS POSITION. IT WAS TOO CLOSE TO THE AORTa and other structures. They tried for five hours and were very disappointed.

I did give a ring today saying my endin. had made a big deal about me seeing the top doc, which he had. I had been to the head of nuclear mewdicine after being on the low iodine diet for two weeks at this hospital--and he basically didn't seem to feel the iodine treatment would help me. hE FElT THE TUMOR And said it was the worst he had felt all year. Then he said he wanted to see discs of my pet scan==and don't call him, he would call me.

Next I heard from my encrin. a couple weeks later saying to go to the nuclear dept at another hospital. I am going there tomorrow. I HAVE THE FEELING THEY DON'T KNOW WHAT TO DO WITH ME.He used to work at this hospital. My enndin. said maybe they can shrink half of it. I don't think the head of nuclear at his hospital agreed. So we'll see.

How are you? Good luck and thanks.

nasher
Posts: 507
Joined: Apr 2010

I am recovering well from everything...

i guess your endo is hopeing that the radiation will shrink the tumor and make it operable mabey

yea nuclear medicine is really hard to get them to agree to try thing that may not be considered mainstream. After it was decided i was going to get my treatment I had to go through a long discussion with the Nuclear medicine people to make sure I understood all the risks and all the complications of giveing me radiation might have.

It really sucks that they couldnt even remove some of the tumor. personaly if they couldnt get some of it cause of location I at least would asume they could have removed 1/2 of it or something mabey.. but I am not a doctor and who knows that may have been worse to try to take some of it out.

good luck and hope they find out how to treat you soon

grateful1
Posts: 81
Joined: Jun 2010

AS IT TURNED OUT THE TOP DOC IS LEAVING AND THIS IS THE DOC TAKING OVER THE DEPT. I SAW HIM AND A VERY YOUNG ASST. I WILL BE HAVING THE RADIOACTIVE IODINE TREATMENT. HOPEFULLY IT WILL SHRINK SOME. I DON'T THINK THEY INTEND TO OPERATE ON IT THEN. BUT AT LEAST IT IS TREATMENT WHICH I HAVEN'T HAD SINCE APRIL WHEN THEY ATTEMPTED SURGERY. I AM GLAD YOU ARE RECOVERING WELL.I DON'T KNOW MUCH ABOUT THIS TREATMENT--THEY DIDN'T MENTION ANY RISKS. JUST DIET A WEEK, TREATMENT, THEN A WEEK OF DIETING AND THEN A SCAN. THE ONLY THING IS THEY WANT TO SEE SLIDES OF MY BIOPSIES, PET SCANS ETC. I TRIED CALLING THE DR WHO REJECTED ME FOR IODINE TREATMENT AND HAD THEM--AND HE IS AWAY UNTIL AUG. SO ALL I DO IS TAKE POLYMVA. I WORRY ABOUT MY TEENAGE DAUGHTER WHO IS SO WORRIED ABOUT ME--THAT'S MY BIGGEST CONCERN. SHE NEEDS ME.

THANKS AGAIN.

lynn2318
Posts: 41
Joined: Jan 2010

Hi grateful1, what type of cancer is it? I have papillary and have been a confusing case for my doctors also. There was a time that my endo and nuclear radiologist didn't really know what to do with me. I am a stage IV since I have lymph node involvement. I hope you have gotten some answers by now. Thanks for letting me know what type. Take care.

grateful1
Posts: 81
Joined: Jun 2010

I HAvE POORLY DIFFERIated thyroid cancer on the left--just a goiter on the right.

they thought the poorly differiated was anaplastic. but i had my biopsy in feb. so i don;t think so thank goodness
i start tomorrow 8 days of injection for radioactive iodine treatment. the doctor sounds optimistic. the tumor is inoperable and this is the first time anybody thought they could shrink the tumor. so i amhopeful good luck.

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