Thyoid update

[Sorrell1]

I posted a little while ago saying I had been diagnosed with Papillary Thyroid Cancer (in addition to MPN) and have since had a total thyroidectomy in March. At my follow up appointment this week I was told everything was successfully removed with no spread to lymph nodes, which is good news. However, they want me to have radioactive iodine treatment to make doubly sure no thyroid cells remain elsewhere in the body. I feel particularly apprehensive about this treatment and wonder if anyone here has been through this and have any tips and advice for me. My haematologist, who I also saw this week, is happy for me to go ahead and sees no conflict.

Thank you in advance.

Female, 68, UK

[hunter5582]

Your trepidation about the radioactive iodine is understandable. The decision will require a careful risk/benefit analysis. I would write out the risks and benefits to help myself look at the issues objectively. I would also ensure that moving forward, I monitored the status of my MPN more carefully/frequently while undergoing the radioactive iodine treatment. One piece of good news, which you should confirm, is that radioactive iodine does not cause any cytopenias. It would also be worth confirming that there is no direct interaction between radioactive iodine and HU or any other medications you are taking. You have already consulted your care team and the recommendation is that the benefits of ensuring the cancer is eradicated outweigh the intrinsic risks. In this situation, Suggest it would help ease your mind to fully understand the rationale for the recommendations you have receives. It would also help to have a very clear plan about how the treatment would go and what increased monitoring you will put into place.

Wishing you success moving forward.

[Sorrell1 in reply to hunter5582]

Thank you Hunter for your helpful reply. I’ll bear those things in mind when I have my appointment on Thursday and ask all those relevant questions.

[CLONDARA in reply to Sorrell1]

Morning, I am sure you know this already but I think it is a good idea to number and write out your questions in advance and work on making them clear and precise. Then you can be sure you will query all your concerns. If possible bring someone who can write down the answers as you listen. Wishing you all the best.

[Sorrell1 in reply to CLONDARA]

That’s a good practical idea. I do have someone coming with me to the appointment as well. Thank you.

[EPguy]

There is a low dose and high dose protocol. You're probably getting the low dose one. It's worth asking, the high dose one has risks to the salivary glands.

This is an example of the two, finding min advantage to the high dose:

"Comparing High and Low-Dose Radio-Iodine Therapy in Thyroid..."

pmc.ncbi.nlm.nih.gov/articl...

[Sorrell1 in reply to EPguy]

Thank you for this information. I’ll have a read and ask them about the dosage.

[lizzziep]

Just wishing you well for the future!

[Sorrell1 in reply to lizzziep]

Thank you.

[Leitrim-girl]

Hi,

Just to let you know that the worst is behind you ! I had the same surgery followed by the radioactive iodine treatment. When I had my first surgery, the right thyroid side was removed as were some lymph nodes. Cancer was found in the lymph nodes and I then had the left side removed along with further lymph nodes. The good news was that there was no cancer in these nodes.

I can reassure you that it’s a very simple procedure and I would definitely recommend it as I just wanted to be fully sure that the Thyroid cancer had been removed.

I know this may sound childish but I imagined the iodine as little packman creatures on a seek and destroy mission, rushing through my body. Silly perhaps but it really helped me.

Wishing you all the very best

[Sorrell1 in reply to Leitrim-girl]

Thanks so much for your very positive response. That’s reassuring. I just don’t fancy the idea of swallowing something that’s radioactive!

[Tipsy2023]

evening I cannot comment in relation to MPN and radioactive iodine .

But my sister ,niece and good friend all had radioactive iodine for an overactive thyroid.

I appreciate this is different but apart from requiring thyroxine for life in two cases they had no ill effects . L

[Mieshie]

Have comment to add about the radioactive iodine. It came with caution about telling doctors and anyone who may get personal that you are taking it. Also had to carry an explanation medical travel doc as depending on how much dose and how long it takes to fade away may trigger an alarm at airport for example. Recovery very smooth and non eventful otherwise. Getting levothyroxine dose right has been a bit of a challenge. Best wishes to you for continued successful outcomes.

[artydutch]

Having supported many family members with various types of cancers and a husband with stage four, I have learned that when surgery removes a cancer, there is a reasonable chance to assume that some cancer cell remain, as you cannot see these microscopic cells with the naked eye. Going one step further with the iodine treatment improves your curative outcome with this cancer. An extra insurance with not too many negatives. Good luck with your choice!

[Sorrell1 in reply to artydutch]

Thank you for your advice and sending best wishes to you and your husband.