How can I get a PRD diagnosis when my GP is useless

Had stage 2 anal cancer in 2015. Treatment was 6 wkeeks chemoradiotherapy. NED since.

However I have all the symptoms and more mentioned on this site. I am so grateful I kept up the research and found you all.

I’ve noticed that my symptoms are getting worse. I have no idea how to get a diagnosis as all of the “oligists” I’ve seen since have never mentioned PRD. I have read the leaflet and found this site and I am so frustrated that the side effects of my cancer treatment were never divulged to me.

After treatment I feel like I’ve been abandoned. I’ve spent the last 7/8 years struggling with the most embarrassing symptoms and not a lot of help. It has affected every corner of my life and quite honestly I struggle most days feeling depressed and anxious because of it.

I need to get a diagnosis so that I can then find a clinic or specialists to help me. Any ideas or information would be much appreciated

[Jimbo65]

Hi there, I have found a late effects clinic. They are around Wiltshire. The one I found is in Bath RUH. If you can find such a clinic they will be able to help you and get some joined up thinking going on. It's so frustrating for everyone when you see one 'ologist for one problem and then another 'ologist for something else and know one has taken a look at the whole picture. PRD is only now becoming more recognised and understood. I sincerely hope that these late effects clinics prove to be effective. And that they get proper funding. So they can help those who have survived cancer but are now living with life changing issues. I hope you get some joy and help soon. 🙏

[Silver1-lady in reply to Jimbo65]

There’s a lady in Bristol who’s brilliant Zoe Walker if your in the area

[Hidden in reply to Silver1-lady]

I’m not in Bristol or Bath I’m afraid. I’m in Kent. I think they’d be too far away. I’ll keep searching. This is part of my problem - trying to find somewhere relatively local.

[Blue_Hawaii]

keep making a noise

Speak to Macmillan, they may able to advise

It’s a battle with the GP, I’ve been there

I wish you well xxx

[Hidden in reply to Blue_Hawaii]

Thank you. I’ll give that a go.

[Warham]

There is a Pelvic Late Effects clinic at Maidstone Hospital. Could you ask for a referral to them?

[Hidden in reply to Warham]

Thank you. I have just sent my details to one of the partners on this site. She said the same thing. I’m ever hopeful that Maidstone will be able to see me and I might even get a proper diagnosis. Thank goodness for this forum. Thanks again

[456Sally]

There are a couple of charities ( prda.org.uk/ gutscharity.org.uk ) See if they have any helpful information.

[Hidden in reply to 456Sally]

Thank I’ll do that

[BlueButterfly4]

Hi, I have been diagnosed with radiation enteritis and radiation cystitis, but no GP/Consultant has ever used the term Pelvic Radiation Disease or, in some cases, even been aware of the term. From what I can gather, PRD is more an umbrella term used to cover such a broad category. With regards to the late effects clinics, which are brilliant, you are able to ask for a referral by your GP even if you are not in that area. For example, I live in County Durham, and we have no late effects clinics locally. However, my GP referred me to the one in Bath. I now have a fantastic support network of people from the late effects clinic in Bath whom I speak to often. Hope this helps.

[Springsteen666 in reply to BlueButterfly4]

Really? I am in Durham and been having a going battle with my hospital The Freeman over late effects clinics in the area. I never realised they can refer out of the area. I am in the process currently of changing GPs as the surgery I have been with for the last 25 years are absolutely useless. I will try for that when I am moved. Thanks for the info and hope you are well

[BlueButterfly4 in reply to Springsteen666]

Complex Cancer Late Effects Rehabilitation Service, Royal United Hospitals Bath. Contact number 01225821126

Contact Jane Cook (clinical nurse specialist).

Out of pure desperation I contacted Bath at the beginning of this year. Jane kindly got back to me and we did an assessment and decided I could benefit from the service. She asked me to contact my GP and ask for a referral to them. It is open to anyone living in England and who has exhausted all local services. I had many years ago attended a local pain management clinic in Chester le Street and it was no help whatsoever as it was not specific enough to my condition.

[Hidden in reply to BlueButterfly4]

Thank you. I have taken these details. I’ll keep you posted.

[Springsteen666 in reply to BlueButterfly4]

Thanks so much. I will give them a try although I suspect as I haven’t yet exhausted all avenues as yet they may not be able to help. I am still having treatment for rectal bleeding at the RVI. In fact having my 4th treatment with purastat next week. Considering usually only 2 are required to fix the problem I am not hopeful. Thanks though and I will see what they say

[3rdNettydoon in reply to BlueButterfly4]

What process was used to get your diagnosis please. I live in Northumberland.

[Hidden in reply to 3rdNettydoon]

Use the contact link on this site to the partners. I’m sure they’ll be able to help you and possibly find a local team or specialist. I’m still trying to get an appointment to see my GP. Bit like waiting to see God!

[3rdNettydoon in reply to Hidden]

Same up here. All sorts of things diagnosed over the telephone nowadays.

I went to AnE Friday through the night because I had blood after bowel movement and the pain in my poor bottom was really bad. The doctor was so lovely and I feel reassured after she examined me. Even internally in the same was what the doctors/oncologists used to do at every cancer check up to ensure the bowel was smooth and felt healthy. She said that the pain n blood was from damage to layers of skin inside and it was very tender looking, even flaking a little.

I was wondering if anyone else on the forum had some experience ogf this and if it could be damage from my radiation treatment for womb cancer 26 years ago.

Thanks for your reply.

[Hidden in reply to 3rdNettydoon]

Hi Sorry to hear you’re struggling. Try MacMillan or contact the partners on this site via their contact link. Like I’ve previously said they are a wealth of information and I’m sure would be able to help in some way. I have to say this forum is a true blessing for me personally. If not maybe speak to your GP. I am under a Urologist for persistent bladder infections. They had some leaflets about PRD and this charity. It’s been such a relief to find I’m not the only one struggling with these issues after radiotherapy. It’s given me some hope and though my GP is next to useless I am persisting and pray they will refer me. (You can’t self refer). Fingers crossed. I’ll keep you posted on my progress. Good luck 🤞

[3rdNettydoon in reply to Hidden]

ThanksThanks forfor thisthis. II hopehope youyou getget thethe rightright helphelp soonsoon.

[Mariecapp]

Hello. When I read what you are experiencing I could identify with it so much. I had stage 2 anal cancer and it was treated the same way you were. I have been cancer free for 6.5 yrs. At about 5 yrs I started to experience not being able to eat because I couldn't digest food thanks to radiation damage. I lost 10 lbs and I cannot sit down now and eat a complete meal. I take digestive enzymes and 2 prebiotics. I take immodium on a daily basis also. Good luck trying to find a Dr that is familiar with PRD. My Dr's look at me like I have 2 heads. Thank God that I'm cancer free but sometimes I feel like these aftereffects will be the death of me.

[Hidden in reply to Mariecapp]

I completely understand that. I too have thought I have a very low quality of life after my treatment because my daily life is affected to such a large degree. I will try MacMillan and see what I can find out. Thank you for your advice and time. Much appreciated

[Mariecapp in reply to Hidden]

I live in the USA and I haven't been able to find anyone here that is knowledgeable about PRD.

[Naneki in reply to Mariecapp]

I'm in California and am still struggling to find someone who is knowledgeable about PRD. I joined this forum for information and was hoping to find one in the states. I'm 22 months out of chemo/radiation treatment for anal cancer stage 2. So far NED but dealing with after effects is a daily issue.

[Hidden in reply to Naneki]

Hi Naneki. Go and speak to your oncologist. Do you have MacMillan out there? They’re a charity in UK and we are usually assigned a MacMillan Nurse when we first get a diagnosis. They work with the oncologist and they are the ones with all the information and specialist knowledge. We can ask them for help with our individual needs and they are generally able to find out most things for you. They are brilliant and their knowledge is infinite. If not you can contact the partners on this site who may be able to advise you further. There is a contact link somewhere on this site. I used that and they sent me the information I needed. Good luck I hope you find someone who can help you

[Sarah_PRDA Partner]

Hello Hidden

I'm sorry to read that you have been struggling with symptoms for so long.

There is a Pelvic Late Effects service in Maidstone.

If you are able to use our get in touch form I will be able to send details to you:

prda.org.uk/get-in-touch

Best wishes

Sarah

[Hidden in reply to Sarah_PRDA]

I have sent the reply via the link you gave me. Thank you so much for responding to me. I had no idea that Maidstone were running this clinic which is a shame. I had my diagnosis and treatment there under Geoff Summers - Oncologist, in 2015. I was also under Simon Bailey - colorectal consultant. I have given my info in the reply. I am so happy I found this site and I am very impressed with responses I’ve had. Amazing. Thank you so much