Hello

[SGH-Aspro]

I am a 72 year old lady who had a cervical adenocarcinoma 45 years ago. The treatment was successful in that I am still here, although I had to pay the price with radiation injury.

I would love to hear from anyone else who has had a similar medical history.

[Jimbo65]

Hi SGH-Aspro, living with pelvic radiation damage is horrible. Especially when you had it and I had it. We were given higher radiation dosages than they do now and so are trying to live with the consequences of damage bowels and bladders. My advice is, don't put up with issues. Cry and become a nuisance to your medical team and hopefully they will refer you to a late effects clinic, or you can refer yourself. The late effects of pelvic radiation is slowly being recognised and various different treatments are becoming more effective and available. Hopefully you can get out and about and thing are not too debilitating for you. Xx

[SGH-Aspro in reply to Jimbo65]

Hi Jimbo,

Thank you for your reply. I am not looking for much from this site... it's just a comfort that other people have had similar issues. I know I am very fortunate to be alive today given that my treatment was ruthless. Yes, I am still mobile but thankfully drive and have a car which makes life more fun.

What about yourself? I have never heard of 'late effects clinic' do you attend one yourself? I do attend a urology clinic and I'm having ongoing ALURIL treatment to my bladder, perhaps you have had this also.

Kind regards, xx

[Jimbo65 in reply to SGH-Aspro]

I found a late effects clinic about a year ago. Its in Bath and it has definitely helped me address some of the side effects that I was 'putting up with'. My bladder has been badly damaged and I am now self catherising as it wont empty completely. I am not sure the ALURIL treatment would help but will certainly mention this next time I attend urology. I'm awaiting treatment for bowel issues. I have a problem with intermitent diarrhoea and unfortunately it can cause me to have accidents. I've done a FOD map diet and know certain foods that might cause issues but theres not rythme or reason as to why I can eat a meal one day and be perfectly fine and then eat the same meal another day and have an explosion! At lease these issues are not holding us back and hopefully medical science will continue to come up with answers in the future. 👍

[JDKPA in reply to Jimbo65]

Jimbo, I just read your profile and I have so many similar issues! I have also started taking loperamide preventatively but it is a delicate balancing act, at best. I try not to let my problems get me down but it is a constant struggle and I have a lot of other medical issues including horrible adhesions from all the abdominal surgeries I have had. In turn, these adhesions have caused small bowel obstructions. Here in the U.S. doctors do not even seem to know what PRD is. Oncologists just want to get rid of the cancer and that is the end of what they do. Just today I found an article by a doctor in Florida who has a lot of good intentions.

ascopost.com/issues/march-1...

I do find it comforting that others share my woes.

[Jimbo65 in reply to JDKPA]

You are not alone. Its so frustrating that there isn't more being done to solve the side effects though. Sending you a big hug from someone who knows. Xx

[SGH-Aspro in reply to Jimbo65]

Me again, did you look up ALURIL, it has helped me reduce the amount of UTI's i get which was 1/month. I still get them because of bowel issues though. I also get pain frequently when i feel the sensation to go for a wee - have you heard of BOTOX for the bladder? xx

[Jimbo65]

Hi, yes I did. And botox was discussed as a way to help my bladder control. However after a hard cystoscopy it was discovered that my bladder was in such a state that the ability to completely empty had been lost. So I was permanently holding water and it would trickle out as the bladder became over full. Giving me no control. No amount of pelvic floor exercises were going to help. I'm now back in control using the catheters and, touch wood, I haven't had a water infection for 3 months and instead of going to the loo many times a day and night, I can now get a decent sleep and plan days out without having to plan it around loos. Well, more or less anyway. The bowels need to be taken into consideration when I'm out and about but I feel mostly in control these days. 😊

[DarceyD]

hi and welcome to our little band. I had treatment for cervical cancer 23 years ago. I have struggled with late effects too. Also glad to be hear but coping with these ‘quieks’ as I call them has been a trial. I found the FODMAP diet a useful tool. Also recently found out how much understanding and treatment is linked to where you live after moving area. I have found a lovely lymphodema clinic which actually prescribes stockings every 6 months. Previously it was a chore getting them from gp. Also waiting on an appointment at a late effects clinic shortly, which is exciting 😂 . I have found showing gp the prd site is useful. Its debilitating and somedays you can feel very alone. You aren’t we are here.

[SGH-Aspro in reply to DarceyD]

Hi Isn't it funny that sometimes you want the medical involvement but at the same time I hate going to hospitals. I live on the outskirts of Glasgow but the only late effects clinic is in the heart of the city.......miles away. I have ordered some of those washable incontinence pants to see if i can work with those. It's nice to chat. x

[DarceyD]

i agree I’m not that keen on being ‘in the system’. However I’m willing to give it a try and see what latest thinking is. I will post my thoughts after appt as it came through for 9/5.

[SGH-Aspro in reply to DarceyD]

Hi Darcey D not too long to go then, we should all benefit from your appoiontment. Thank you for keeping us up to speed...we will look forward to reading your news!

[RoseTyler]

Hello; I think we have all had similar medical history, hence we are here in this forum ;). It is a right pain in the arse, but good to know we're not alone :).