After complete thyroidectomy (cancer) I am waiting for radio iodine treatment. What is the recommended gap between surgery and iodine treatm

After complete thyroidectomy (cancer) I am waiting for radio iodine treatment. What is the recommended gap between surgery and iodine treatment? My operation was in mid-February 2014 and I was told to expect iodine treatment six weeks later. However, no date was provided and I started making enquiries. It turned out that the referral went to the wrong consultant (oncologist instead of endocrinologist). In the end I received an invitation to see the consultant in Mid May (oncologist after all!) who will then decide what to do in terms of further treatment. I am worried about the delay in the treatment plan, aside from the inconsistent advice given. Not to mention the fact that as a patient I needed to organise my own treatment, otherwise I would have been forgotten by the NHS.

Last edited by

4 Replies

oldestnewest
  • "forgotten by the NHS"

    Thats sounding a familiar story for all kinds of cancer patients IMHE lately

  • I believe the recommended period is within 6 months of completion surgery, so please don't worry that the delay has caused any damage to your health. There have been recent rethinks about the necessity for RAI all dependent on the type of cancer diagnosed (ie aggressiveness), size of tumour, patient's age so RAI may not be recommended.

    Mine was organised by oncologist two years ago and about 10/11 weeks after completion which was 3 months after the tumour was positive for Hurthle cell carcinoma. I was on Liothyronine (T3) which had to be stopped two weeks prior to RAI as TSH has to be allowed to rise. Iodine containing foods need to be avoided two weeks prior to RAI too.

    Follow up whole body scan 6 months later meant Levothyroxine had to be stopped 4 weeks prior to RAI but T3 was prescribed up until 2 weeks prior.

  • Hello completely sympathise with your experience. I had total thyroidectomy early March and am scheduled to have radio active iodine end of May. I also had to chase referral as the nuclear physician was on a 6 week sabbatical so no one to refer too! I have subsequently spoken to this Dr and she said that as long as it was papillary cancer at stage 1 or 2 then a 6 month window is 'acceptable'. It doesn't seem right that we have to put our lives on hold whilst a sub standard health system decides what is acceptable care.

    Good luck with your treatment and I hope your can pick up real life again soon.

  • My treatment was overseen by the oncologist and RAI was in November after surgery Jan and Feb, so no need to worry. Good luck x

You may also like...