HT/RT/Proctopathy Observations

User

Posted 09 Jun 2022 at 20:42

Originally Posted by: Online Community Member

Contact the moderators, Nick - they should be able to do it for you (as long as you choose a title that no one else has used!)

I am so chuffed after two years on this site, I know something that Lyn doesn't know👍

🤣

There are so many things that I don't know .... no one ever wants me on their pub quiz team but I could tell you exactly what was agreed in a meeting 10 years ago and then I would be able to produce the minutes!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 09 Jun 2022 at 20:43

Originally Posted by: Online Community Member

Cheers Lyn! I will avoid the word 'journey' for starters 😂😉👍

😆

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 02 Aug 2022 at 14:00

Latest PSA result (from 30th June) : <0.03

Had a F2F with Oncology - she advised that the rectal bleeding is unlikely to be related to the 'minor RT damage' diagnosed during the sigmoidoscopy, more likely haemorrhoids! :) :) Got a GP appt next week to discuss.

Also discussed the HT Window and was advised 3 years E2E, so would be due to complete circa Dec 2023 (if all goes to plan...)

Edited by member 02 Aug 2022 at 14:11 | Reason: Additional info

User

Posted 02 Aug 2022 at 23:42

The diagnosis of the cause of rectal bleeding is the responsibility of colorectal, not oncology.

When you had your sigmoidoscopy, did they mention haemorrhoids? You should go back to colorectal to check and advise.

Colorectal diagnosed radiation proctitis in me, but as it's minor, painless, and not causing any quality of life issues, it wasn't necessary to do anything about it. They did give me some steroid cream I can try if I want to. The important thing is to get colorectal to check it's nothing serious such as bowl cancer. My oncologist also told me to warn them not to biopsy any area of radiation proctitis just out of curiosity, only if they really think bowl cancer may be present too (biopsies of radiation proctitis often never heal).

User

Posted 03 Aug 2022 at 10:30

Hi Andy, mention of haemorroids was made in the more detailed sigmoidoscopy report, i have suffered with them previously so it all kinds of adds up in terms of symptoms etc. Many Thanks for the advice.

User

Posted 30 Dec 2022 at 19:26

Hi all, just a quick update as I haven't for a while! No issues with PSA, I'm onto 6 monthly checks now and in my last year on HT. However .... I am still suffering from some bleeding as described previously; I think the Proctosedyl (prescribed by GP) got rid of the haemorrhoids but I have been referred by my CNS to a Gastro Consultant who specializes in Radiation Proctopathy for further investigation (currently waiting for appt....no surprise...); a couple of low blood counts (white cell and haemoglobin) were also referred to Haematology but no further action advised on those at present unless they drop further.

Can I take this opportunity to wish everyone on this fantastic forum a Happy 2023, and the Best of Luck with the ongoing battle for those affected. Very special thanks to those who have offered some really great advice over the past (nearly) 2 years....time files when you have PC eh... :)

Cheers,

Nick

User

Posted 25 Jan 2023 at 21:21

An update - Gastro sent me direct for another Sigmoidoscopy which I had on Monday (with the joys of ‘MoviPrep’ to clear the bowel again from 6a.m….) - frequent bleeding issues have been attributed to Radiation Proctopathy (not Bowel Cancer thankfully , though the symptoms I have are pretty similar....phewww....).

Couple of options to try and resolve and I’m going to try sucralfate enema’s first I think (formalin as the backup, though that doesn’t sound like an over appealing treatment!!); anyone done a course of Sucralfate and/or Formalin, did it help ??

Another Question ; would proctopathy improve on its own over time or is treatment a must, I’m guessing the latter ? (it’s now circa 15 months since my radiation treatment completed)

Cheers,
Nick

Edited by member 26 Jan 2023 at 04:14 | Reason: Not specified

User

Posted 03 Mar 2023 at 23:08

One last try to see if anyone out there has had Sucralfate and/or Formalin treatment for Radiation Proctopathy per my last post ..... I'm still waiting for the next appt ..... :)

Many Thanks!

User

Posted 03 Mar 2023 at 23:27

I can't think of anyone ever mentioning it on here Nick - sorry :-( You can be our intrepid reporter!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard

User

Posted 04 Mar 2023 at 00:06

Cheers Lyn... and will do :)

User

Posted 04 Mar 2023 at 00:07

Nick, you could try the pelvic radiation disease association , www.prda.org.uk. There is a link to their Facebook site on there.

They did point me in the right direction with my radiation cystitis.

Thanks Chris

Edited by member 04 Mar 2023 at 00:08 | Reason: Not specified

User

Posted 04 Mar 2023 at 06:48

Hi Chris, looks promising, many thanks!

User

Posted 28 Jul 2023 at 23:49

Its been a while so ....

Last 2 blood tests - PSA undetectable ...... One more Prostrap 3 injection to go in October to complete my 3 years of HT .....

Sucralfate Enema's ....... at a high level its basically 'self service' with a syringe (and a funnel) you make up of 10ml Sucralfate and 20ml water ... you are then supposed to lie in 4 different positions (for 5 mins each) whilst retaining the liquid in the rectum ..... not easy (I've dropped the water content down a bit ); It was a bit of a challenge at first but after a few adjustments I'm managing OK(ish). Things have improved a bit but still getting the odd bowel movement with a lot of blood....however, will continue to persevere!

User

Posted 20 Oct 2023 at 12:11

Had final Prostrap 3 injection yesterday...nigh on 3 years gone just like that... Wow....the last 12 to 18 months has been pretty tolerable bar a quite intense period of hot flushes, definitely not so many random aches and pains though.

Had a 6 monthly review with my marvellous CNS last week... PSA Untraceable... Haemoglobin continues to hover around 114...bit low! Due to the ongoing rectal bleeding...

.... Discussed next steps w/rgd to the bleeding as sucralfate not showing much benefit, she recommended trying the formalin treatment so being referred.

Next blood test March 24, next CNS review April 24.

Best of Luck to all!!

User

Posted 20 Oct 2023 at 16:17

Yes time does fly when you're enjoying yourself. It took me nearly a year to recover testosterone after my last injection. I'm glad your PSA tests have been good so far.

Dave

User

Posted 20 Oct 2023 at 18:41

Cheers Dave, might treat myself to a Deuchars ale tonight 🍺 Love reading your posts, many thanks for taking the time! 👏

Ps if anyone has experience of Formalin treatment would love to hear your thoughts... I've also asked via the PRDA website but nothing back yet... Thanks.

User

Posted 11 May 2024 at 21:04

So, nearly 7 months on from the last Prostrap 3 injection... No hot flushes, no strange aches and pains, FLW no doubt!, and the return of some functionality! Decho, if you read this there is hope! :)

Had a blood test done 1/3/24, so circa 4 and a half months post HT... PSA Still untraceable...haemoglobin at 120, so +6 from the last blood test, surprising given the amount of blood I'm still passing. .. Have heard nothing yet ref the Formalin treatment mentioned previously so a reminder will be sent....

Next blood test due circa 1/9/24 then a CNS check-in. ..where I guess we might see a PSA rise? Is it circa 6 months post the last injection or more random?

Cheers and good luck to all.

User

Posted 26 Sep 2024 at 09:05

6 monthly checks completed (blood test circa 10 months on from the end of 3 year [Prostrap] HT) :

PSA 0.04 (in line with expectations)

Haemoglobin 117 (down from 120 at last CNS review, so continuing to bounce around due to the ongoing rectal bleeding...)

Another referral to be made for the Formalin treatment (now 12 months since the first referral !)

If anyone out there has experience of Formalin treatment please get in touch , it would be much appreciated.....thanks!

User

Posted 22 Mar 2025 at 20:06

6 monthly check results, circa 16 months post 3 year Prostrap HT :

PSA 0.06 (+0.02 on last check)

Haemoglobin 128 (+11 on last check, normal range starts at 130 I believe..)

Testosterone 20.3 (new check)

All in all a good result... But still waiting for the Formalin appt....

Good Luck to all!

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