Debbie,

Thanks for taking the time to answer my
questions. I don't know if I mentioned that I
have papillary cancer too, so it sounds like I
will be following a very similar protocol.
Including the RAI therapy.

I have been suffering from debilitating fatigue
and mental confusion for almost three years now,
so my hope is that once the cancer is out maybe
these symptoms will go away. So I know how
messed up thyroid hormones can really wreak havoc
with your quality of life.

In fact I've been feeling a little tireder than
usual lately, so I'll it may be awhile before I
get back here again. Sometimes even formulating
thoughts into words can be exhausting. I do have
my pre-op app't on the 16th, no idea yet when the
actual surgery will be. I'll let you know how it
goes.

Thanks again, *so much* for all the info. I hate
it when I feel like my doctor is holding out on
me - especially when you're dealing with
something as scary as the c-word. What I imagine
is always worse than the reality.

frankie







>Hi Frankie,
>
>Your endocrinologist sounds very much like mine, and I think my doc
>is wonderful. But I know EXACTLY how you feel! I had the same
>patronizing attitude from my doctor too, 'all in good time'
>and 'lets take things one step at a time' and 'we'll cross that
>bridge when we come to it' - I WANTED TO BE INFORMED not PACIFIED.
>
>So if I can I will help you along a little bit, with what little
>knowledge I have. :-)
>
>First things first, you will see an oncologist when it is time to
>have your RAI ablation therapy. (If you have RAI ablation therapy -
>that is) If you don't there is no need to see an oncologist.
>
>I went to see an oncologist only when I had to have RAI ablation
>therapy, I had to prepare my body to receive the radioactive iodine,
>by going on a low iodine diet. Normally you would only go on this
>diet for a couple of weeks prior to your scan, but my endo put me on
>it as soon as my thyroid was removed. I think he thought I would
>have my scan quicker than I actually did. So I ended up being on it
>for just over 7 weeks. Anyway I only saw the oncologist to have a
>pre ablation interview, I saw him again when the RAI was administered
>(a pill - from a lead lined cylinder - handed to me at the end of a 3
>foot stick!!!!) and I saw him about a month after the ablation and
>after my first full body scan. Other than that I have not seen him
>since. An oncologist is not really necessary for my type of thyroid
>cancer anyway.
>
>I am happy to be seen by my endocrinologist. And yes the
>thyroglobulin (tg) measurements are taken along with thyroid hormone
>(tsh). This is absolutely necessary, because even though our tsh may
>come back as normal, if we show any signs of increasing (tg) levels
>there is an indication that our thyroid cells are re-growing, and I
>for one, would have to have more ablative therapy if that happens.
>
>I was more or less treated in exactly the same way you are being
>treated, although both my endo, and the oncologist both made it clear
>to me that the first scan I had taken after my ablation would be my
>marker scan and any other scan I had after that would be checked
>against it.
>
>As I said before my treatment was slightly more aggressive because my
>cancer was found in my lymph nodes first. I had a routine operation
>to remove an over-active parathyroid (which was benign) and they
>found the cancerous cell then. When I had my thyroid removed (three
>weeks later) they could only locate a 2mm tumor in my thyroid. So
>all indications were that my cancer for some wierd reason was
>particularly aggressive - definately not normal for this type of
>cancer. So they treated me aggressively and it worked :-)
>
>If you have no indication that your lymph nodes are affected your
>treatment may be somewhat different. Your treatment will be
>established when they do the lab tests on your thyroid after it is
>removed. So in this case, your doctor cannot tell you too much about
>what is going to happen at this point because they will not know
>until after you thyroid is removed.
>
>It is likely that you will have ablation anyway, I understand that
>most people diagnosed with thyroid cancer go through ablation therapy.
>For any of us to have this treatment our thyroid hormone levels have
>to be above 30. Normally we are hovering plus or minus one. It
>takes about 6 weeks for our thyroid hormone levels to increase from
>one to above 30. And everybody reacts differently.
>
>One week after my thryoid was removed my tsh was 70 - 2 weeks it was
>144 - goodness knows what is was by 7 weeks, even the doctors didn't
>bother to test me. As a result of my sky high hormone levels I was
>really ill.
>
>The following year I had another scan and my endo did not take the
>chance of stopping my meds to I had that scan using Thyrogen
>injections, and the year later we decided to chance it and see what
>would happen if I just stopped my meds, I was on Cytomel for about 4
>weeks then nothing for 2 weeks prior to the scan. Surprisingly
>enough I felt fine, tired, sluggish, tempremental, but on the whole
>file. My tsh rose to about 68 if I remember rightly.
>
>So you will definetely come off your meds, and you may either come
>off them al-together or be given cytomel for a few weeks first.
>Again that will be up to your doctor to determine.
>
>You did not mention when you are going to have your 'op'. I was
>lucky I did not have too much time to reflect on what was happening
>to me, I just went along with what I had to do, and like you searched
>the internet for the answers to the questions my doctors either
>thought were 'stupid'- 'irrational' - or just plain 'crazy'.
>
>But not matter, how stupid, irrational or crazy your questions are, I
>bet one of us has asked them before :-).
>
>We are here for you. If I cannot answer something, I am sure someone
>else will jump in and help you out.
>
>Debbie
>
>
>
>--- In ThyroidDisease2@yahoogroups.com, Frankie <unicorn@g...> wrote:
>> 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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>> >
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