Radiotherapy - Scared of side effects

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Hi all,

Ive had a radical hysterectomy in jan due to cervical cancer -  due to complications during the op i have had to live with ureter stents and a catheter in place for 8 wks. I suffered with numerous uti’s and stent irritation on my bladder which was horrendous.

The stents and catheter are now thankfully gone and im recovering from it all now, however due to the horrible bladder issues i had, im now scared of the radiation side effects which i know can cause bladder/bowel issues.  
Can anyone help ease my mind that they are manageable side effect and also what meds you used to keep it manageable please? Thank you in advance 

  • Good Morning Bubbsy80

    Welcome to the Online Community.

    I am sorry to see that you have had complications during your hysterectomy and  suffered from UTIs and irritation from the stents. That sounds so uncomfortable. Am glad that the stents and catheter have now been removed enabling you to recover from it.

    My cancer was womb but I also had a hysterectomy and also had 25 sessions of external beam radiotherapy to my pelvis.

    I can understand that you are concerned about the possible side effects to bladder/bowel- especially after going through so much already.

    If it helps I will share a bit of my treatment with you........

    My radiotherapy was daily for 5 weeks starting August 2022. 

    My main side effects were tiredness  and upset stomach. 

    I did have chemotherapy before the radiotherapy so this could have affected me and how I reacted to the radiotherapy. 

    I found side effects built up during treatment, continued for a short while after and then started to settle.

    I think the tiredness was partly emotional, partly due to the traveling and partly due to recovering from chemotherapy. 

    Upset tummy started around day 3- apparently a bit earlier than expected. Diarrhoea and a little discomfort. I had some nausea towards the end of treatment. 

    The radiotherapists are used to these side effects and checked each day to see how I was getting on. 

    To control the diarrhoea took a few attempts but was given advice on diet (low fibre, bland foods etc) I was given loperamide to take 30 minutes before eating. I was given buscopan for tummy cramps. There was ondansetron for nausea but also has a constipating effect. Finally I was put on codeine phosphate. Together these got things manageable and I was able to complete treatment despite frequent trips to the loo. It wasn't pleasant but manageable. I had what they called an extreme reaction. And the thing to remember is it effects people differently and a lot of ladies seem to breeze through it. 

    My bladder was not too bad. A few times it felt a bit like when you are getting a UTI but it was manageable by drinking lots. It was more an uncomfortable feeling. I did find I went a bit more than normal but it completely resolved after radiotherapy finished. 

    I was given a skin moisturiser to use and didn't suffer any skin effects. 

    After treatment finished I was given a set of vaginal dilators to use to but not had any problems in that area. 

    I am now around 6 months from treatment. The only continuing side effects are I am watching my diet as certain foods give me an upset tummy. I seem to have developed some food intolerance but greatly improved by cutting out lactose and limiting dairy and high fibre foods. It's about avoiding things like oranges that I know don't agree with me. 

    There is a Radiotherapy forum on here that you may like to look at. It is not specifically for cervical cancer but I found it useful.

    Radiotherapy & Side Effects forum - Macmillan Online Community

    There is also an Ask the Nurse section that I found helpful for any medical questions and I have put this as you asked about medication. 

    Ask a Nurse - Macmillan Online Community

    If you prefer to talk to someone then the phoneline is below and I found it helpful.

    If there is anything else you need support with or if you have anything further you want to ask about please do not be afraid to do so.

    I found that once I knew what was going to happen and looked at some of the ladies experiences on here, it took some of the worry away. I was well looked after during the radiotherapy and it was all manageable. The thing also to remember is that although they need to warn you of all the potential side effects, it does not mean that you will suffer from all or even any of them. Everyone is different.

    I would do it all again if I needed to.

    Hope this helps

    Jane

           

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi  

    I appreciate that you will probably have extra concerns with what you have been through already, but try not to focus on the possible side effects-some ladies sail through treatment with no issues and you may be one of them!

    When you sign the consent form for radiotherapy they must list all the possible side effects which might happen, but it doesn’t mean to say you would have any or all of them. You just need to be made aware of the potential for them. 

    The main thing to do is let your team know about any side effects you experience and there will be something to help. For me, the side effects kicked in 3 weeks into treatment, and I had diarrhoea and cystitis.

    I had a weekly review at radiotherapy treatments with my consultant and immediately got prescription meds to help with everything which I was able to pick up at the hospital pharmacy straight away.

    These side effects were very manageable and the prescriptions are free for cancer patients as you should have an exemption card. I got Loperamide for the diarrhoea and various creams for the cystitis. Side effects for me went away very soon after treatment finished and had no lasting effect. 

    Hopefully you will be absolutely fine-I found fatigue to be the worst side effect to be honest- but we can share tips as you go through treatment with things which worked for us if you experience anything similar. 

    Sarah xx


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  • Thank you so much for all the info jane and thank you for sharing your experience, this has made me a bit less wary about it all.  I know i can get through it im just still maybe a little bit fragile mentally but i know im strong and will get through it, sode effects or not, just like all you strong lovely lot.  
    I hope you are now doing well and enjoying life again.

    thank you xxx

  • Hi Sarah,

    Thank you for taking the time to respond and for all the info and personal experience.  Reading this and others comments has definately helped me breathe a little and helped eased some anxiety.  
    i think i am still a little fragile mentally but i know i can do it, and i had some good advice earlier that its sort of a situation of “no pain no gain” it hurts because it is working Hearts

    Im glad yours wasnt too traumatic for you and that you got through it strong

    Thank you and all the best xxxxx

  • I would have no hesitation in doing it again  although that wouldn’t happen as you can’t have radiotherapy for a second time in the same place! It’s really not too bad at all and doesn’t take long-you usually spend more time sitting about in the waiting room! 

    Do you know how many sessions you will be having? Typically it’s around 25 sessions, one each each weekday for 5 weeks, but there can be variations on that-I needed 32 in total for example. 

    Will you also be having any brachytherapy(internal radiation)? If so, there are different ways for this to be carried out depending on whether you have a womb or not, so having had a hysterectomy it would be slightly different to those of us with cervical cancer who still have their womb.

    Sarah xx


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    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi Bubbsy80

    We're all different in how our bodies react to radiotherapy, some sail through and are able to carry on much as normal and others struggle.

    Like you my radiotherapy (+chemo) followed on from a radical hysterectomy, which in my case left me unable to wee naturally and I was having to cope with urinary catheters throughout my treatment.  I didn't have an easy time in terms of side effects and there were occasions when I didn't think I could carry on, but we do what we must.  Looking back my issues weren't  just physical but mental as well - fear of the unknown; be kind to yourself and rest when you need to.  The treatment is doable and you will be very well monitored and supported by your medical team. 

    One advantage of having the radical hysterectomy means the brachytherapy (if you're having this?) is fairly minimal. I had 2 sessions in out-patients lasting just 15 minutes each.

    I was diagnosed with stage 2A squamous cell cervical cancer (node negative) in 2017 following symptoms: persistent, watery, yellow vaginal discharge then post-menopuasal bleeding.  My treatment was a radical hysterectomy followed by chemo-radiotherapy.  My long term side effects include lymphoedema and urinary retention which I manage with intermittent self catheterisation.
  • Hi Sarah, thats extremely re-assuring that you wouldnt hestitate, if required and able, to do it again.  I am set to 25 sessions as you said daily for 5 weeks.  No discussion about needing brachytherapy so im assuming its not deemed as required. With my radical hysterectomy everything has been taken so probably would be different.  But hopefully it wont be needed

    thanks again xxxx

  • Im so sorry you have gone through what you have, you have definately been through it.  Like you said we do what we must but doesnt stop it being hard as you know all to well it seems. I think because of the bladder issues experienced already my brain is telling me im bound to get the side effect that is bladde related which makes me anxious as i know how painful and uncomfortable the issues can be.  I will be fine and sometimes it juat helps to read that we are not alone (i know we are not but helps to compare experiences)

    Im sorry you have long term side effects also, cancer is such a horrible horrible thing.  I hope you are coping ok and able to live your life well 

    thank you for your honesty and all the best xxx

  • To be honest  I would go through any aspect of my treatment again if it meant getting rid of the cancer. Treatment is a temporary ordeal to go through to get to something better, so I’d always be prepared to go through whatever I had to do. 

    Sounds like you’re not going to need brachytherapy if it hasn’t been mentioned, so that’s one less thing to think about! 

    Sarah xx


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