Completed radiotherapy - side effects are worse

Hi my consultant told me that symptoms likely to get worse for 1st couple of weeks after finishing as treatment still working and cumulative. Mine didn’t really get worse but 3 weeks on think mine are subsiding! I was told I could still ring the radiographers if concerned though - so they may be able to help with medication to ease things?

Hi Ange, well done for completing your radio. Are you still sticking to the suggested pelvic radio eating plan or have you returned to what you usually eat? I found it best to stay on it for at least a couple of weeks then slowly introduce the things I’d stopped eating during treatment. 

Hi Ange

I am sorry to hear that you are having side effects from the radiotherapy. I was told that the side effects can get worse for a few weeks after treatment has finished and then hopefully should start to subside. 

Are you taking any medication for the tummy effects? I would recommend speaking to the radiotherapy dept/or your CNS. I needed some medication to get things sorted and in the end it was a combination of medicines that did this. Sometimes it is also not just about the medication but how/when you take it. I was prescribed loperamide, ondansetron, buscopan and codeine phosphate- but there are other things they can try. Once I had control again then they were reduced. 

I believe that sometimes the effects can be greater if you have had chemo first, as I know that I was not fully recovered from the chemo when I started my radiotherapy. It all adds up.

Diet is important- and I stayed on the radiotherapy diet for several months before reintroducing certain foods. Anything with fibre and too much dairy would worsen the effects. I kept a food diary and noted how many times I went to the toilet and where it was on the Bristol Stool chart. This was used at my check ups to help get some control back. 

If you are having frequent diarrhoea and have urgency then it is worth getting a Can't Wait toilet card as it can take away some of the worry when you go out. You can get one from your CNS or via Macmillan. 

I suggest first step is to email or call the radiotherapy dept- explain your symptoms and they should be able to give some advice/medication. 

With radiotherapy they target it really accurately but it is impossible to prevent it reaching some of the healthy cells. The idea is that the healthy cells should recover in time, while any cancer cells are damaged and die off. The recovery of the healthy cells can take time- hence the symptoms can persist after the treatment finishes, for a while. That is how it was explained to me.

Hope this helps a bit and that things begin to settle down for you soon. 

Jane

Hi Ange – I have not had pelvic radiotherapy and ladies on here can offer more reassurance about this likely being short-term thing, worse before gets better, etc.

However, I recently lived next door to a lady who did have late effects (which I was very aware of both from speaking to her in person and hearing through our thin neighbourly wall). If you find these symptoms don't settle, then you can look up the Late Effects page on Macmillan regarding pelvic radiation. You would not be alone and please don't worry about any TMI. People are always sympathetic. I gave my neighbour as much reassurance as possible even cleaned stuff up outside our flat – she was just incredibly unlucky and also very young (thirties). She eventually moved to ground floor accommodation so did not have to manage stairs.

f you are struggling do ask for help sooner rather than later. It will be there. Even something as simple as getting a Radar key or a Just Can't Wait Toilet card. You don't want to be worrying about toilet access when you've got the "runs". Hopefully, this all improve for you soon! But, if not then there will be support available.

Have added in a link in to the bowel booklet so you have guidelines for what needs to be raised with your medical team and when – as Jane says I think you do need to contact your team sooner rather than later. The booklet considers both long-term and late effects (they are differently defined) and gives suggestions on things to do to manage any side effects continuing after treatment has ended.

www.macmillan.org.uk/.../mac18911-bowel-late-effects-pr-lowres-20210924.pdf

Hi Ange19

When I finished my 25 sessions I had terrible stomach issues including wind, very fast and furious bowel movements and pelvic pain. For me this lasted about 3 weeks. Two times when out shopping I had to desperately find a toilet as I was close to having a nasty accident. I wasn't told anything about a pelvic radiotherapy eating plan that some of the others have mentioned but just advised to eat less insoluble fibre for a while. Have to say things did settle down and luckily seems fairly normal now for me with that particular side effect.

Hope things improve for you very soon.

Hi Ms Viva

Thank you for replying.  Maybe I’ll have to be more careful about what I am eating or just ride the storm a bit and hopefully like yourself it will settle down.

I’ve read your profile, and I also was diagnosed with Stage 3a grade 2 cancer and I also had chemotherapy followed by 25 sessions of radiotherapy.  Like you say it is so scary when you find out, but now we’ve had the treatment and start enjoying life again.

Good luck and best wishes to you

Ange

Thank you and the same to you! Just updated my profile as I'd not added in about my first 3 monthly check I had in May which was all good, thankfully.

I'm sure things will ease back with those side effects soon. 

Bedt wishes to you too! 

Hi, just read your profile and very similar to myself. Radical Hysterectomy, spread to cervix outer wall, 13 lymphnodes removed all clear. Recommended adjuvant therapy, 18 weekly sessions of chemo, 25 radio and 4 brachytherapy. 1st chemo Paclitaxel had an Anaphylactic reaction and passed out, changed to Docetaxel and again an Anaphylactic reaction. Due to see Oncologist this week to see what is next for me. So worried about which chemo he will try next as the reactions were awful. Not looking forward to the radio either as the side effects sound dreadful. Hoping you are now through the worst of your treatment and some normality is coming back into your life, looking at your experiences, you have been so brave. Good Luck for a full recovery. x

Hi, Just read through your profile and its looking like I will be on a similar journey to yourself.  Thank you for highlighting a lot of things that have been making me wonder what will happen as I go through my journey. I hope that your symptoms get better for you and you are soon on your journey to recovery. x

Hi

Thank you for your reply and wish you good luck with your treatment and hope they can sort your chemo situation out. It is scary when you have a reaction but luckily for me I had some warning signs (sudden breathlessness + chest and back pain) before passing out so I was able to call to the nurses and they were like a SAS team on it each time. I'm sure the Oncologist will be able to sort something out and I would write down any questions you have beforehand and take those with you. Please try not to worry about the radiotherapy but ask questions if you need to. It's scary when you hear or read all the potential side effects but thing is they have to list everything. I've been lucky overall and I'm sure you're find that most you have will be short-term or at least manageable. But I would strongly recommend you call your CNS or Macmillan Support if you have any worries or questions at different times. It can be very stressful and you don't want worries getting on top of you when you have treatment as well to deal with.

Best wishes and good luck x