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Decision time in 2 days - would like to hear from others who have been offered pelvic radiotherapy

Issimay9
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Hello, I had a radical hysterectomy for endometrial cancer two months ago and have now been offered pelvic  Radiotherapy. But I would like to hear from other members whether they suffered long term effects. I have a partly trapped nerve in my back which gives me buttock pain  and do not want it to get worse.   Could I please have your views quickly please as I have to decide in next 2 days. Many thanks!

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    Hi Issimay9, 

    I hope that you are recovering well from the radical hysterectomy and that you will hear from others who have been offered pelvic radiotherapy and suffered long term side effects. I realise you probably need to make a decision very soon and it's not an easy decision to have to make so if you wanted to discuss the pros and cons with one our cancer nurses, feel free to get in touch with them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

    I've noticed a thread you might be interested in - a couple of weeks ago,  posted on the subject of living with side effects of pelvic radiotherapy and don't hesitate to post a response if you wish to do so. 

    Best of luck with making this difficult decision, 

    Lucie, Cancer Chat Moderator

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    Hello 

    I had 25 sessions of pelvic radiotherapy. It put me into early menopause and I also have chronic radiation cystitis now and occasional urinary incontinence. I was made aware of the side effects and the possible long term effects of radiotherapy before I had it.

    Xx

  • Offline in reply to haylzz

    Thankyou halylzz for your reply- I'm so  sorry to hear of your chronic radiation cystitis - it must be awful.  Please can I ask - do you have the cystitis symptoms all the time, or several days of the week day? Sorry to ask, but am still trying to weigh up the pros and cons - it's difficult isn't it. Many thanks. Xx

  • Offline in reply to Issimay9

    Hi

    The bladder problems started about 3 months after I finished treatment and they got gradually worse so I was referred to urology. At its worse it was pretty much all the time.....at one point I was going to the loo 6 or 7 times during the night and having numerous accidents in the day but urology started me on Solifenacin which appears to be helping now.

    It is difficult to know whether you've made the right choice or not. Having said that I don't regret having radiotherapy.

    You might already have looked at this but I've found the Pelvic Radiation Disease association really helpful (PRDA). They have a website with people's stories on. I also think that Jo's Cervical cancer trust have a section on their website about it.

    If you have any other questions feel free to ask :)

    Xx

  • Offline in reply to Moderator Lucie

    Thanks so much for all the info Lucy - much appreciated!

  • Offline in reply to haylzz

    Thank you so much for your reply Haylzz,

    I 'm glad they have now given you a drug which is helping you with the urinary problem .

    I will certainly let look up the PDRA and see what they have to say. 

    You did t get any pain in your legs or anywhere else did you.? 

    Thanks again.  Best wishes to you  

  • Offline in reply to Issimay9

    Hi

    No not in any pain from the radiotherapy directly. My joints ache sometimes but I think that is more menopause related.

    Xx

  • Offline in reply to haylzz

    I'm Glad you had no pain from the radiotherapy.

    Do you recall what cancer stage you were? (1-4) and did you have chemo as well?

    Sorry, these are definitely my last questions! Thanks so much. 

  • Offline in reply to Issimay9

    Don't apologise! I honestly don't mind answering questions about it. It was Stage 3c and I had 5 rounds of chemotherapy called Cisplatin.

    Xx

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