Radioactive iodine this Friday

Posted , 4 users are following.

Hi there ,

After two thyroid operations in May and September due to thyroid cancer, I am now coming up to the last bit ( I hope)  of radioactive iodine at The Royal Marsden in Sutton. I have been on a low iodine diet for two weeks now and have sorted what I need to take in, but no one has told me what to wear. As I shall be in isolation for four days plus, I am wondering if I should take in loose trousers and t shirts for day and PJs for night. Really don't fancy being in those hospital gowns all the time. Now feeling very nervous at the thought of being shut away and a general sense of not knowing what is to happen. I have seen the pill I will have to swallow and nearly had a fit as it looked so big, but the physicist pointed out that it was magnified by the glass container it was in!

For those feeling nervous about the hemi or whole thyroidectomy, don't be worried aas it is not at all painful afterwards, just a bit tight round the scar.

I didn't have a choice because my cancer was found by chance during an ultrasound following a stroke in December. From then on the procedure took off at lightning speed.I had to go along with it.

I have opted out of the clinical trial at The R.M because I am the sole carer for my 95 year old husband, who has Alzheimer's and is confused enough already as to why I keep leaving him for hospital stays and appointments.

Luckily we have four marvellous children, who bend over backwards to help me out when I have to travel long distances. Incidentally the trains are on strike this week and I have to go to the hospital on Wednesday and Thursday mornings for thyrogen injections before the RAI on Friday. I am growing greyer by the minute!

If I can help anyone please ask. I am finding this forum very helpful and it is good to know others are going through the same. So far I haven't met any other thyroid papilloma sufferers.

1 like, 11 replies

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11 Replies

  • Posted

    Hi Jenny. I too had a hemi then complete thyroidectomy due to finding papillary cancer. I am due to see the oncologist on Wednesday to see if I need the radio iodine treatment. I'm not sure if I want it or not, I'm 35, and we've been trying for babies (prior to the operations), which will obviously have to be put on hold if I do it. But then I thinking I don't want to risk anything!

    I hope the treatment goes ok, would be great if you can post updates

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    • Posted

      Hi Olivia,

      I do feel for you, but much better to complete the whole caboodle and get rid of it. I was told that if you have to get cancer this is the best one as it is rarely fatal Like you, I was dubious, but told after the first hemi that I would have to have RAI.  Better to be safe. Of course I will post updates if it helps.

      Where are you? i am fortunate enough to live near Croydon and within the area for The Royal Marsden. I am so pleased I am being treated there at the end, as everyone without exception was so kind and it was really overwhelming the number of questions, informaton and tests thrown at me in one morning. I had five people involved in my care all talking to me together and it was stressed at every stage that I need not have the treatment even if I had signed the forms of consent.

      I had both thyroid operations at St George's and they were wonderful too and very caring. Cannot fault the NHS on any of my treatment, but looking forward for it to be over.

      Can I ask if you have a sore or rather dry throat? Mine seems always dry and I cough a lot as a result. Also I have lost my singing voice, which used to be high soprano , but now more like a bass baritone! My speaking voice is the same, but have to use more effort.

      The surgeons say my vocal cords have recovered from the bruising, but that I may have some nerve damage causing this loss of voice, if so there are people who are trained to help a little later on.

      Good luck with the oncologist appointment, I should be receiving my first Thyrogen injection then!

      Keep smiling

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    • Posted

      Please tell me your early symptoms and tests for diagnosis for thyroid cancer.  My voice has changed; cannot clear throat; lumps/thickening w/ pain on left side of neck; headaches; all loss of energy and wakefulness; an enlarged paratracheal lymph node; loss of weight, etc.
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    • Posted

      Hi Kris,

      I had no symptoms other than a lump appear on my neck, like an adams apple. Bit strange in ladies so got it checked out.

      Ironically, it wasn't that lump that had the cancer in it, but another one they discovered once i'd had a few scans etc.

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    • Posted

      Hi Jenny,

      I'm based in Crawley and fortunately have BUPA through work so have had both ops and follow ups through Nuffield in Brighton, who have been brilliant.

      I don't seem to have a dry throat paticularly, at the moment i'm struggling with my thyroxine levels not being correct - my hair is falling out, I'm really tired and miserable etc. Blood test confirmet was too low so am waiting for the increase to kick in - fingers crossed that sorts me out.

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    • Posted

      Bad luck. have you had the RAI yet or not?

      I had my first injection prior to the in patient stay this morning and another tomorrow. So far so good apaart from a sore butt, but we did get the carpark free as were in and out in 20 minutes!

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  • Posted

    Oh you poor lass Jenny.  I'm not a medically qualified person so cannot offer any advice and the only experience I've had was drinking radioactive B12 for a "Schilling" test back in 1968 and again in 1972.  My wife used to say I glowed in the dark but I didn't believe her.

    All I can do is wish you well in the hope that the treatment is successful and that you are soon back with your husband.

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    • Posted

      Thanks Clive for your kind words, I can use everyone I get. This is the worse bit waiting for things to happen, but I have complete confidence in all those looking after me.

      A bit of a table turn as I used to be a radiographer myself and ironically that is probably why I developed it in the first place!

      As for glowing in the dark, I will let you know!

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  • Posted

    what do you know about enlarged paratracheal lymph nodes?


    How did you find cancer in thyroid?

    Would you tell me your early symptoms?  please.  I need help knowing which doctor or test to trust.  I've been scheduled for an epidural for persistent neck pain, lumps/swelling.


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    • Posted

      Not very much I'm afraid, but if the lymph nodes are enlarged it points to something being wrong. My cancer was found after I had a scan following a stoke, but prior to that I had noticed a chokey throat and difficulty clearing it. have you had an ultra sound of your neck as that is how mine was discovered?

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