Dear Deborah,

I live in Pennsylvania (near Pittsburgh), and my endocrinologist has
mentioned having a single RAI after the surgery, as well as a body
scan. She has also said to just take one step at a time, cross the
bridge when you come to it etc. So I don't know what else she has in
mind. She's definitely one of those doctors who *doesn't* like a lot
of questions - expects unquestioning trust. Not my style - I'm
probably not the best patient - I have lots of questions and want to
understand and be included in the decision-making process.

My biggest concern is that I went to 10 different doctors before I
finally got this diagnosis - so saying that I don't have a lot of
confidence in doctors would be a massive understatement. She
reassured me that I don't need an oncologist for this. I wonder if I
do - and considering my luck with doctors - how I would know a good
one if I found one.

She is the best doctor I've seen through all of this and it is so
upsetting to realize that I risk alienating my best doctor because I
want to feel like I'm making good choices about my health. She
looked at me like I'd given birth to puppies when I suggested that I
needed an oncologist.

She has only mentioned one follow-up body scan. And my husband
mentioned something about monitoring thyroglobulin levels afterwards.
Is that what your blood tests are?

I am already on levothyroxin since I was fist diagnosed with
Hashimoto's Thyroiditis. She is keeping me on that dose until after
the surgery. Will I have to stop it for the RAI?

frankie




>Hi Frankie,
>
>Welcome to our group :-)
>
>I was diagnosed with papilliary thyroid cancer in February 02, and
>had my thyroid removed three weeks later! I was diagnosed after
>moving to the USA in June 01, from England.
>
>Due to the nature of my cancer (it was found in my lymph nodes first)
>I underwent Radioactive Iodene Treatment within 8 weeks of having the
>surgery, which meant I was not given any thyroid medication what-so-
>ever.
>
>I became quite ill for a while, but the RAI therapy worked and all my
>scans since have been clear.
>
>I only see my endocrinologist now for my follow ups.
>
>Once you settle down on the right dose of medication for you (this
>could take well over 6 months, and you will be tested every 6 weeks
>until you get to the right level) you will undergo, annual check-ups
>for the first three years or so - at least that is what happened to
>me.
>
>I have had three full body scans, annually, and now because my scans
>were clear, I do not have to have another one for three years. As
>far as I know, if I have two clear scans at three year intervals I
>will not need another scan for 10 years after that!
>
>My blood is tested every 6 months or so, (as I said) and I have an
>annual chest X-Ray and health check. I assume this will be the norm
>for the rest of my life.
>
>As for questions to ask!!! They are endless, and you have found a
>good formum to fire away at all of them :-)
>
>Have you been told about RAI therapy? Do you know what the course of
>action will be for you, once you have your thyroid out? Have you
>been told about certain things to look out for after your surgery,
>like watching how you move your neck?
>
>I am curious to know where you come from, because from what I know
>treatment differs slightly depending upon which country you live in.
>Which state you live in (if you live in the USA) specailly when it
>comes to the RAI therapy.
>
>Hope I have not drowned you in too many words.
>
>When is your 'op' - do you have a date yet?
>
>Regards
>
>Deborah Ford
>
>
>
>
>
>
>--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...> wrote:
>>
>> I was diagnosed last week with thyroid cancer and am scheduled to
>> have a thyroidectomy. I have been suffering from debilitating
>> fatigue for over three years, so strangely enough I am really glad
>to
>> have an answer finally.
>>
>> My endocrinologist - who is the one who *finally* diagnosed me -
>has
>> offered to provide follow-up care. Is this typical? Do I need an
> > oncologist?
>>
>> Anyone have any suggestions or knows of any other questions I
>should be asking?
>>
>> Thanks in advance,
>>
>> frankie
>>
>> [Non-text portions of this message have been removed]
>
>
>
>
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