Thyroid cancer

A place for people affected by thyroid cancer to support one another, ask questions, and share their experiences.

Radioactive iodine treatment staying in hospital

Sabahsza
Posted by

Hi all I wondered if anyone could offer some advice on their stay in hospital for this treatment, I am worried about being in isolation for 5 days it seems like a long time and there’s not much to do as you're stuck in one room. 

Also are there any common side effects of the treatment?

Thank you 

Runner25
Posted by

Hi 

I had RAI in August this year. I was in for 2 nights, which equated to one full day and 2 half days. I was then let home with restrictions, as I am in Scotland are much stricter than the rest of the UK.

I was admitted into the cancer ward, which made me realise how lucky I am as there were some very sick people. I was taken to my room about 2.00 pm given my capsule and then left. I didn’t take in any technology which I enjoyed the break from. I had a landline which I could make calls on, but chose only to call my husband. I had taken in a jigsaw which took up a lot of my time, a few books and I did watch television. There was a stack of DVDs in the room. There was a fridge and kettle in my room so I could make drinks and the fridge had biscuits and cheese in it. I took a hair mask use, as there was plenty time to leave it on! My food was left outside, sometimes the staff spoke when they brought it in. I had a Geiger counter reading the following afternoon and was told there was no reason why I shouldn’t get out the following day. 

I quite enjoyed the  peace. I did sleep quite a bit but I think emotionally I was exhausted. 

I felt sick and I did get an injection, I wish I hadn’t bothered as it was really sore 

If you are worried, ask nuclear medicine to show you the isolation suite. This helped me as I knew what I was going to. 

Five days seems a long time to be in isolation, most people it’s usually three nights maximum.

I hope this helps.

Vivienne Sally
Posted by

This really does help as I am due to go in Jan 13th and I really have no idea what to expect.

Thank you 

Vivienne
LancastrianInExile
Posted by

I’m due to go in for my RAI mid-January, with Thyrogen injections on the two days prior to admission.  They have estimated two days in hospital.

Did you feel as well (physically)on leaving hospital  as you did going in?   Just wondering if there’s any reason to delay planning a post treatment mini-break.

"Time is for spending, not saving." : quote from Lakeland Fells guidebook writer, Alfred Wainwright, seen on a Thwaites's beer glass, and after whom the ale was named.
NellC
Posted by

Hi

I completed RAI treatment in July. I was in for 5 days too.

The room had a tv, dvd etc.. I took books, magazines and all my electronic devices.

It was a long 5 days and as a social person I felt the isolation. It was probably the first time since diagnosis I had acknowledged I had Cancer.

I could speak to my family on the phone and my husband visited once. He had to sit at the other side of the room and couldn’t stay long but it was nice to see another human!

I had my levels read on day 1 and 2. Days 3 and 4 fell over the weekend so no staff were working. The only contact on those days were the staff delivering meals. That was hard and when I felt the isolation the most. 

I had lots of scans on the last day. Some lasted 10 mins and some 20mins etc.. then a blood test. I followed instructions to the letter, showered 3 times a day, drank loads of water etc.. so had very little restrictions on leaving. Physically I was ok, I just felt a little achey and had some restlessness in my legs. Emotionally  I was very tearful and grateful to be going home. 

Runner25
Posted by

Hi

i felt fine on being discharged, but it is a strange feeling being let out into society once again. 

How soon were you planning a mini break after treatment? I am in Scotland where restrictions are stricter, but on being let out I had to stay away from crowds for 2 weeks until I went back in for another reading. At home I couldn’t share a bed with my husband, I used our other bathroom and for the first few days couldn’t prepare food. 

If you are planning to fly the radioactive reading can set off the detectors at airports and you would need to get a letter from the hospital explaining this. 

This sounds tough but in a practical sense it a 3 weeks of your life including the treatment.

All the best

Runner 

LancastrianInExile
Posted by

Hi Runner,

Good to hear you felt fine, I shall anticipate the same.

Ive been told I’lll be let out (sounds  like release from prison!) after a couple of days then a week of keeping my distance from people, especially children and the pregnant, and sleeping on my own.   I’ve decided to take advantage of the solo sleeping by treating myself to a jar of pickled onions!  Keeping away from children will be hard with our grandsons (aged 8 and 4 year old twins) living two doors away.

Flying won’t be an option for a while - we hand a holiday booked before diagnosis so when we notified Saga 8 days before flying and that I would be having surgery on my return they promptly cancelled our travel insurance.   We ended up having to pay £1650 for a week’s cover.   It’s going to be UK holidays for a while, probably including Scotland.

All the best for Christmas and he future.

"Time is for spending, not saving." : quote from Lakeland Fells guidebook writer, Alfred Wainwright, seen on a Thwaites's beer glass, and after whom the ale was named.
Lass
Posted by

Hello everyone! So, lots of things to go over in this thread, so I'll start at the top and work my way through. Hopefully it'll be in time for everyone going in this month.

- As Runner mentioned, it's not necessarily 5 days you're in for. However this will vary from hospital to hospital. Mine in Leeds takes you in on a Monday morning and releases you on a Thursday lunchtime, or in on a Thurs morning and out on a Monday lunch. Generally, the rooms have a TV in them with freeview and a DVD player. They will also have a mini fridge for you to keep things in during your stay. You should stick to your LID until you leave hospital to give it the best chance, according to mine, but this again varies. In England, generally what you can take in you can take out again. So I've taken in my laptop, DVDs, my phone, etc etc. Check with your hospital what the policy is.

 For things to do, treat it like a spa break. So take in loads of nice things to pamper yourself with - no nail varnish though. You'll need to have 2 showers a day while you're in, with at least one hair wash a day, so you might as well make the most of it with skin treatments, hair masks, face masks, etc etc. I dyed my hair while I was in, so I went in one colour and came out a completely different one! lol.

Side effects, take in some obuprofen and paracetemol if you're ok taking them. Headaches are the most common side effect of the treatment, and it's a lot faster to get rid of if you have your own medication than if you have to ask a nurse for some. Runner also mentioned the nausea. You should get an anti-sickness tablet before you take the RAI tablet which should see you through the day. If it doesn't, or you feel a bit queasy the next day then do buzz and ask for another.

- any questions in particular you have? Any niggles or worries at all?

- Honestly, you shouldn't feel any different the entire time you're in there. It's a really good treatment in that regard, unlike the chemo you get for other sorts. You'll always be given a worst case scenario by the oncologists and nurses, mostly because they aren't involved in the radioactivity side of things, and don't really know how it works. Make sure and drink at least 2 litres of water a day while you're in, and make sure to use the facilities for both ones and twos as much as possible, as well as showering twice a day. On the day you're to be released, your radioactivity levels will be measured and then you'll be given your actual restrictions. I've had RAI 4 times now at higher levels than any of you should be given, and the longest restriction I was given was after being let out on the Thursday lunchtime I was told to stay home until the Sunday tea time. After that, 0 restrictions.

In regards to travel insurance, as soon as you have that cancer diagnosis then they charge a premium. However, for something like run of the mill thyroid cancer that isn't going to change while you're on a 2 week holiday, you can get it excluded from a normal policy. So you're covered as normal, including medical, just not for anything thyroid cancer related. If I try and include my cancers in my policy, I'm looking at astronomical costs. But I exclude them, I'm looking at a fiver. So if you fancy a holiday abroad, go for it! And if you want your cancer covered, there are lots of companies in the travel insurance thread that people are getting cover for around the £50 mark!

Lass

xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

LancastrianInExile
Posted by

Hi Lass,

Thank you for your encouraging words - not just for me; but for all the others you help.

Here in South Staffordshire, (now you know why I’m “in exile”! ), our excellent treatment hospital is on the edge of Wolverhampton.  They anticipate me being in for 2 days,  then a week of being a recluse - due in part to having 3 grandchildren living 2 doors away!    I’m now halfway through the iodine-free diet and have the pre-RAI jabs Monday and Tuesday then in on Wednesday.  I’ll post up how it goes!

Best wishes

Lancastrian-in-exile

"Time is for spending, not saving." : quote from Lakeland Fells guidebook writer, Alfred Wainwright, seen on a Thwaites's beer glass, and after whom the ale was named.
LancastrianInExile
Posted by

Had the RAI capsule on Wednesday afternoon and was released to the custody of my family home this (Friday) morning, with a list of contact prohibitions based on my radiation level which was down to 13 of whatever the units are called.    Going back on Monday to see the oncology nurse for a follow-up reading and revised prohibition list.  

My two nights in solitary confinement passed reasonably well with the subscription telephone/TV package and a copy of Private Eye which I'd left unread.     Warning:: the phone part of the package gives you an exclusive number for people to phone you - at an extortionate premium rate.

The room floor was covered in plastic  which crackle like bubble-wrap when walked on, except for the half metre by the door which I was forbidden to step on.    The oncology nurse would enter and stand on this bit and extend a steel tape measure for me to hold against me whilst she took radiation readings holding her end of the tape.

The best thing about my two days; incarceration was being told that the iodine-free diet was over - celebrated with a cheese sandwich and tea with REAL milk!

It seemed odd being in hospital whilst in effect "fit" - none of the usual regular monitoring of "vital signs";.and staff opening the door ajar just enough to put food and drinks on the trolley for me to pull into my zone.    

"Time is for spending, not saving." : quote from Lakeland Fells guidebook writer, Alfred Wainwright, seen on a Thwaites's beer glass, and after whom the ale was named.
Lass
Posted by

Glad to hear all we nt well, and always interesting to hear how different hospitals do things. In all my years, I've not heard of a hospital having plastic on the floor! Love it! Lol

Do keep drinking at least a couple of litres of water a day to help flush everything through before Monday though, as it will also help protect your delicate squidgy bits like your salivary glands! 

Enjoy your weekend, and I hope things have dropped further on Monday so restrictions can be lifted! 

Lass

Xx

Hope is important because it can make the present moment less difficult to bear. If we believe that tomorrow will be better, we can bear a hardship today. - Thich Nhat Hanh

LancastrianInExile
Posted by

The plastic was self adhesive, peel-off-able "carpet protector.  They'd also put it on everything I was likely/allowed to touch, like taps, bed frame, TV,,  handles, etc.     The plastic-covered chair gave one a sweaty backside and kept trying to slide one off onto the floor!

For the benefit of my saliva glands I was recommended to take lemon sherbets; but as a type 2 diabetic had to get sugar-free ones which are potentially diuretic if you overdose on them.     

"Time is for spending, not saving." : quote from Lakeland Fells guidebook writer, Alfred Wainwright, seen on a Thwaites's beer glass, and after whom the ale was named.
Emma2020
Posted by

I’m having my RAI on the 29th. Reading the posts I’m feeling slightly concerned as I was told, by the radiologist, that after treatment, I would be able to go home after a few hours on the same day but need to keep away from pregnant women and children under 5 I then need to go back 2 days later for a scan and to check my radioactivity levels again. I was told I should take my phone and/or an iPad but a lot of members on here have have advised not being able to take anything in. I’m confused. Has anyone else been given the same advice as me?? 

LancastrianInExile
Posted by

As Lass says, regimes vary from hospital to hospital.  However I think you should query what the radiologist says with your consultant.

I was told that it would be 2 days in a single en suite room then home with  restrictions when geiger counter readings were low enough.   Radiation level readings on discharge (Friday) were used to define my restrictions which were:

Sleep alone for 7 days,keep min 1 metre away from adults and over 5s for 7 days, same distance from 3 to 5s for 13 days and at least 3 metres away fromnpregnant women and children under 3.

I had a nulear scan before I left the hospital and have a follow up hospital visit on Monday for another GC reading with which they may revise or lift the restrictions.

"Time is for spending, not saving." : quote from Lakeland Fells guidebook writer, Alfred Wainwright, seen on a Thwaites's beer glass, and after whom the ale was named.
Emma2020
Posted by

Thankyou for taking the time to reply LancastrianInExile.
I think I will double check as I have made no plans with regard to staying overnight let alone a few nights. I have a 6 year old so the restrictions will be tricky  

Emma x