Oncologist scan results - asking the right questions

Dear All,

This may seem strange but I've found myself leaving meetings with Endo or Oncologist after a few days I realise i didn't ask the right questions. I've had my 2nd 9th mth whole body scan done 4 weeks ago & in 2 days I get results if my papillary cancer or treatment has improved/worked. TBH I'm nervous & unsure of what to expect not sleeping much so I'd like to enlist help of this forum to help me put a list of questions together which maybe based on "I should have asked that" scenario. I know this may feel like blind leading blind with no results in hand but it's so hard to get an appointment in diary to ask any questions I may have missed so I wish to make sure I'm ready. If anyone has had positive or negative results I hope to learn from your experiences either way and be prepared. Welcome your thoughts. Best to all.

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Gosh, you are having a hard time. Welcome to the group. I’m sure you will f8nd that there is always someone on here who can help you.

I know exactly what you mean about remembering what you wanted to ask after you’ve left the room.

I can’t help with a list of specific questions but I started to keep a notebook with a list of questions I wanted to ask - I just jotted down anything that came into my head between consultations.

I used to put my questions (and anything that was bothering me) down as bullet points and kept them brief - I felt I could ‘lose’ my doctor / endo if I made my points too long and I have to say I do tend to ramble.

I also kept notes of all my blood tests and their ranges in my book as well as anything else that was relevant - that could be notes or newspaper items or articles from Pulse or from books on treatment of thyroid that backed up what I wanted - in my case examples of patients who had been on carbimazole for very extended periods of time (my endo wanted to go for rai should I relapse, I want to stick with carbimazole so evidence is useful for me)

I think if you appear with your thoughts all organised in a notebook and have questions you want to ask and things you want to know then it shows that you are taking an active part in your treatment rather than passively having something done ‘to’ you.

Best wishes to you, I hope you get good news about your progress.

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BSGTraveller,

Ask whether the WBS showed thyroid cells anywhere.

Ask whether TSH is to be suppressed <0.1 and, if so, will GP be advised.

Ask whether/when your thyroglobulin and thyroglobulin cancer marker levels will be checked and whether they will be checked annually. Ideally they will always be checked by the same lab.

Ask whether you will continue to be monitored in endocrinology or referred back to GP.

I was never told that I was cancer free or in remission. When, a year after surgery and 6 months after WBS I asked, they seemed surprised I didn't know the cancer was gone and I was in remission. Thyroglobulin and thyroglobulin antibody blood tests were done 5 months after WBS. I was informed that if thyroglobulin remained <6 and thyroglobulin antibodies <20 it was unlikely thyCa had recurred.

I have annual blood tests and consultations with my endocrinologist who palpates my neck and throat to feel for lymph node swelling which might indicate recurrence. Happily thyroglobulin has always been undetectable and antibodies <20 so no recurrence and I've been in remission 5+ years. My thyroid health is wholly managed by my endocrinologist and I have been sternly advised not to allow GP to interfere with my dose.

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Hi, sorry this question is a bit off topic for the thread, but I've been concerned about thyroglobulin in NDT.

I'm a thyca patient and I've recently had a tburoglobulin antibody test that's alarmed my Endo. Although its not as high as 20.

I'm wondering whether the thyroglobulin in NDT could effect this result. Clutter, do you know if it can impact these tests? Thanks so much for any information you can offer.

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SilverAvocado,

I really don't know. What was your thyroglobulin result? I think the concern about thyroglobulin antibodies is that if they are high they may interfere with the thyroglobulin result.

My initial post RAI thyroglobulin antibody result was 12 and subsequent TgAb has been shown as <20. MDT were happy with those results.

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For the Endo my anti body result was: 11kIU/L (no range given).

Because I'm getting BlueHorizon test packs I've had it done a few times in the past year, and its been 18 .7 and 12.8.

I believe mine was lower shortly after TT, but I don't have the numbers on me.

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SilverAvocado,

Is 11 the thyroglobulin or thyroglobulin antibody?

When Tg and TgAb are used as cancer markers it is important to use the same lab to avoid variations in technique/machinery which may be why your BH tests are different to the hospital lab.

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Oh sorry, you were asking about thyroglobulin. Actually I'm not sure how this is presented in reports! I think it's Thyroglob II. The recent result was: Thyroglob II89.5 ug/L

Last year and before it was always, <0.1 ug/L.

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This looks a bit weird and its not letting me edit. The result is 89.5, but it's showing up right next to the II.

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SilverAvocado,

Mine has always been <0.1 which they consider undetectable. If thyroglobulin is 1189.5 or even 89.5 that means there is thyroid activity which increases the risk of recurrence. I really think you need to discuss this with your endo. If there is suspicion of recurrence they should do a RAI whole body scan to see what lights up.

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I've recently had an ultrasound, and my appointment is in a month. But obviously I'm taking thyroglobulin in a tablet every day, so I wonder if it could be that. But it sounds like you haven't heard of anything known about that?

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SilverAvocado,

I really have no idea whether thyroglobulin in NDT affects your thyroglobulin result. Perhaps you could Google it.

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Thanks for the messages Clutter. I had been fobbed off by my Endo that checking up on this was no big deal and just a precaution. I'd never looked at that number and seen how high it looks!

I should be wise to that, as I know her strategy is is to underplay everything - the day she told me I had cancer she presented it as good news.

But now I'm going to carry on looking into it.

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