Advice needed please

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Hi all

I was diagnosed with Papillary Thyroid Cancer at the beginning of June and had a total thyroidectomy on the 27th June 2019. Surgery went really well and I have no real issues. I was already on Levothyroxine 100mcg but after surgery it was increased to 150mcg. I had a PET Scan done in August.

Today was my first appointment with the oncologist and she has given me a couple of options and I really don’t know what to do.

The tumour they removed was 3.5cm, so I am in the middle for RAI. If it was 4cm then I would definitely have RAI but if it was 1cm or less then no RAI.

The option I have been given is either to go on the IoN trial and let the computer decide or I decide to go ahead with the RAI. My only concern with going ahead is not seeing my 2 & 3 year old children, but I know they will be looked after.

What do you suggest? Is there anyone on the IoN trial? Also my PET Scan showed inflammation of the bowel - could that be a sign of something sinister? The doctor said they will scan that area but I forgot to ask when. I am having my bloods done on Friday, as my Tg has never been checked.

So sorry for the long post, but I honestly don’t know what to do.

Thank you for reading.

Miss NRP

FormerMember over 5 years ago

I had Follicular Thyroid Cancer earlier this year, lump was 4.2cm so was advised strongly to have RAI, which I had at the beginning of June this year. Like you, I was dreading leaving my son (9 years old), but knew that I had to do it. If I were you and did not go for the RAI I would always be worrying about things. Whereas, having had it and since then having a thyroglobulin level taken and the result was good, this has put my mind at rest. I had never been away without him before so it was strange for both of us. When I got home from hospital I only had a week's restriction to keep a distance away from him.

I spoke with my husband and son everyday on facetime and the time actually went by quite fast. I was in hospital from Tuesday and got discharged on the Friday afternoon. The only side effect I had from the RAI was blocked salivary glands on the first couple of days (this felt like someone had punched me on both sides of my face!!)

Leaving your children will be hard, but it is only for a short period of time, and I know if I hadn't had the RAI I would be paranoid that any pesky bits of thyroid tissue left would or could do damage.

I hope this helps

MissNRP over 5 years ago in reply to FormerMember

Thank you sus17 for getting back to me. I have decided to go for the RAI, as I know I will be constantly thinking is it back. I know it will be hard leaving the kids but I know once I have had it done, I will be in a better mind frame.

Thank you again

xxxx

FormerMember over 5 years ago in reply to MissNRP

I had RAI in August as I has 2 tumours and lymph node involvement. My children are older than yours, so not so difficult to leave.

I didn’t find the treatment that difficult and actually enjoyed the peace, I was able to catch up on sleep! I didn’t take in a phone or laptop as I am in Scotland which has much stricter rules about what you can take home straight away. I left with my glasses and am hoping to collect everything else at my next appointment. I did have a telephone in my room so could call my husband. I annoyed the technology break.

If my cancer does return I know I have done everything I could to try and prevent it.

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Advice needed please