Stories of longer term radiotherapy side effects?

Hi CJM93, welcome to the group and well done for having had your op. I appreciate you have a need for info but please please, for your own sake, stop googling! Dr Google should be struck off and consulting him/her will just scare you and mess with your head as it’s likely to give you a mix of outdated or extreme or untypical/rare or irrelevant info. 

I had radio last year in April/May 2022. This was for grade 1 stage 2 cancer. I had 25 radio and 2 brachy. I drove myself to and from every appointment (an hour each way), had no side effects till week 4 and even then just had a little bloating and a bit of urgency which was helped with Buscopan. After treatment the mild bowel disturbances gradually disappeared and I was able to return to my normal eating patterns. 

Because of my age, being post menopausal and having had hypothyroidism for over 30 years, my risk for bone density issues was higher, and my oncologist said she wanted me to have a DEXA bone scan after treatment, so I had one 4 months afterwards. This was done on my pelvic area and showed that I have osteopenia, which is bone thinning that can lead to osteoporosis, and i‘ve been prescribed a daily calcium supplement to try to improve my bone density. Whilst osteopenia can be a side effect of radiotherapy it is a RARE side effect, and most likely because my risk factors for it were already elevated. 

Even if I’d known in advance that I would develop osteopenia, I would still have gone ahead for the peace of mind. My radiotherapy was as as insurance policy, “belt and braces”, and I have never regretted having it. 

Hello CJM93

I had my chemotherapy and radiotherapy last year. Before I had them I was very concerned about any side effects and also any Late effects. Nothing that happened during either treatment matched my fears. I did have side effects from both but most of them could be helped by medication. Googling what can happen is to be avoided. A lot of it is not accurate or out of date. 

When they tell you about the side effects they always need to tell you every possibility and they have to do this to get your informed consent. It does not mean that you will get all the side effects and if you do get some it does not mean that they will be permanent. 

Some people seem to get very mild effects that resolve quickly. Some people seem to be more affected. For me, knowing what I do now, I would still go ahead with both treatments. The risks from the side effects for me were worth having for the peace of mind knowing that I have done everything I possibly can to prevent the cancer returning.

You have asked about the radiotherapy and for me I had a more extreme reaction and still have some effects a year later. However I manage these mainly by diet and they do not stop me doing things. How you will react can not always be completely predicted and it can also be influenced about how you are after chemo. It also can depend where the pelvic radiotherapy is actually directed.

My main effects during treatment started from the 3rd appointment and mainly were fatigue, diarrhoea and some nausea. Most people don't seem to mention nausea but some of mine was directed a bit higher up to get to the lymph nodes so my small bowel had effects. 

For me the fatigue I think was partly due to the travelling to the hospital, partly due to getting over the chemo and partly due to the radiotherapy. I think also there was a bit of an emotional part for me. 

The diarrhoea, although bad at the time was quickly addressed by the radiotherapy team/consultants. I was prescribed a cocktail of medication and it got things under control within a few days. If you do get some diarrhoea then there are different options that can help.

I did get some nausea, but was given meds that pretty much controlled it until the last few days.

They should give you some dietary advice and this is what helped me most. There are foods that they suggest avoiding if your tummy is feeling a bit delicate. High fibre was not good. Plain, bland food like toast was ok. But remember everyone is different. 

After radiotherapy, I am monitored at my check ups and keep a food diary, toilet diary. This has identified which foods I have become intolerant to and which foods I am ok with. I have a traffic light system and we are now starting to reintroduce foods. I have lactose intolerance, avoid too much dairy and fibre and other than that can now eat most things. I now have my bowels open twice a day on average, whereas before it was normally once. I have good control. 

I still use the dilators regularly and have had no issues in that area. 

The only other thing worth mentioning was that I did have some bladder irritation during treatment, a bit like when you are going to get a wee infection however it was very mild. It normally meant I just went a bit more often and could not hold out quite as long. This still happens occasionally but if I keep well hydrated it goes quickly.

If you do get urgency, either diarrhoea or with urine then you can get a toilet card form your hospital which helps from a psychological point of view. 

So although I did have some effects and some have remained- the thing is- they are well controlled, don't stop me doing anything and I can manage them. If you are one of the unfortunate ones who do get anything that lingers- they can help. I have found that with time, all of these effects have got a lot better and I do not regret having the treatment. And a lot of people will get only mild effects, if any. 

If there is anything in particular you want to ask, then please do so. I wish you all the best with your treatments.

Jane

 I had brachtherapy, a form of internal radiotherapy. It was a one off treatment over 21 hours. It's the standard treatment at the Weston Park Cancer Hospital in Sheffield but I've not heard of it anywhere else. I had some vaginal soreness in the first few months post treatment plus quite a bit of wind!,  I also had one or two urine infection about 4 months after treatment. All were manageable if slightly irritating. Hope it all goes well for you.

Hi I've had brachytherapy I've had not had any side effects to shout about I've had my dilators any tips how to use them would be helpful

Hi Coffee19, well done on having had your brachy - how long ago did you finish? Did you have a session with a brachy nurse explaining what to do? Having read a few threads on here, I opted for buying a vibrator - silicone, natural shaped and far more comfortable than rigid plastic. It can be used with or without vibration. My brachy nurse said it can be easier to do it just before or just after a bath so that’s what I do. I use the plastic dilators if I’m in a rush or the vibrator if I have a bit more time to chill and enjoy it. Another lady on here bought a set of silicon dilators from the same company and found them more comfortable than the hard plastic. 

Hi  MarmiteFan 59 I finish brachy on 24th October the nurse told me to have a bath I haven't got a bath would it be better if I use it squatting? Do I get the silicon dilators from the website thanks for being so helpful

Hi MarmiteFan59

Apologies for taking so long to reply, the notification emails were sat in my junk mail!

Thank you so much for sharing your experience, it's definitely put my mind at rest. My chemo and radiotherapy is also a "belt and braces" situation, and I suppose if it gives me the peace of mind that everything that can be done has been done, then it's worth it. I've taken your advice about not googling as well, Dr Google definitely doesn't put your mind at ease!

Thanks again

Hi Jane2511

Thank you so much for taking the time to reply and sharing your experience too. 

I suppose Google just lists every possible side effect, no matter how probable or not. I've taken both yours and MarmiteFit59's advice and avoided googling! I think annoyingly human nature needs information to try and process and rationalise but that information isn't necessarily correct or helpful, and I think after the initial confirmation that I would have to have radiotherapy after chemo sent me down a 'must know everything' trajectory which then opened up a whole can of worms!

Like you say, even if there are side effects, there are meds and ways to help ease and overcome them. 

Thanks so much again, all of your insight has been really helpful and put my mind at rest

Hi SH53

Thank you for replying and sharing. I think, as my old boss used to say, I've got to put my big girl pants on and get on with it and take each day as it comes!

Hi l was the one who bought the set of silicone dilators from the website that MarmiteFan59 suggested. The set is made up of five dilators from a teeny size upward. It’s advised that they are used lying down and to accompany with a water-based lubricant to make insertion easier. I usually do my sessions before having a shower putting a towel under me to ensure no lubricant gets on bedding. 

After a while, it becomes just routine. I haven’t experienced any discomfort which I guess indicates that everything is okay down there. I found that the silicone ones are more comfortable to use than the hard plastic of the NHS set though obviously I had to purchase myself. Both my oncologist and brachytherapy nurse said that many women prefer vibrators or these.