Salvage radiotherapy

User

Posted 10 Jul 2022 at 13:33

Thanks Ulsterman, I last had a colonoscopy a couple of years ago. They diagnosed radiation proctitis. Things have become much worse though so I’ll will contact my GP again and ask about the SEHCAT scan. I had to look that up, hadn’t heard of it before.

Hope all is well with you.

Ido4

User

Posted 10 Jul 2022 at 13:42

Ido4,

Looking good lets hope they can sort your big end out mate.

Regards John &Pat.

User

Posted 10 Jul 2022 at 18:52

Hey Ido4,

Have followed your brilliantly documented story these last 6 months, Love your positive attitude. Wishing you all the best.

Jamie.

User

Posted 16 Jul 2022 at 11:32

Ido4 - I spoke to someone at the Pelvic Radiation Disease Association about my symptoms. I was initially diagnosed with Radiation Proctitis.

The lady at the PRDA said that most hospitals are useless at managing it. She warned me not to see a surgeon. When I asked my Oncologist what the plan was, she said, 'I'll speak to one of the surgeons' .

I politely declined and asked for a referral and got a referral to a specialist in Harrow recommended by the PRDA. That doctor was fantastic.

They did the SEHCAT scan for bile salt reabsorption. Mine came back borderline. She said she could start me on medication for it but I opted for imodium and normacol. It has worked.

The PRDA has a list of gastroenterogists who accept referrals for suspected PRD. Might work differently in Scotland, but I had no problem getting a referral to an out of area hospital.

User

Posted 17 Jul 2022 at 19:21

Thanks Ulsterman, Much appreciated.

Ido4

User

Posted 17 Jul 2022 at 20:24

Ido4, I had a similar conversation to Ulsterman with a lady at the PRDA in connection with my bladder issues.

Hope you get sorted.

Thanks Chris

User

Posted 18 Jul 2022 at 16:27

Thanks Chris.

Ido4

User

Posted 04 Oct 2022 at 15:21

Update time. My latest PSA tested on 28/9/2022 is still undetectable at <0.10.

Very happy with that. I finished hormone therapy in Spring 2019 after salvage radiotherapy in March/April 2017 and prostatectomy July 2015.

Ido4

User

Posted 04 Oct 2022 at 15:29

Hi ido4,

Great results long may it last.

Regards John.

User

Posted 04 Oct 2022 at 15:35

👏👏👏

Glad to read that.

My OH's current treatment is similar to the one you had. On HT now. Crossing fingers at next PSA in November. Last one was 0.04.

Best wishes to you and every guy here.

Lola

User

Posted 04 Oct 2022 at 16:43

Thanks John and Lola. Hoping all goes well for your OH Lola.

Ido4

User

Posted 07 Oct 2022 at 17:49

Great results Ido4

Keep kicking its a**e

Bri

User

Posted 08 Oct 2022 at 10:24

Thanks Bri. I certainly hope I keep kicking it into touch.

Ido4

User

Posted 09 Oct 2022 at 20:20

Well done! Not been on the forum for a while so it is nice to come on and see some good news!

User

Posted 09 Oct 2022 at 21:29

Hi Ido that’s really good news and very pleased for you. You’ve just jogged my memory that my next psa is in 10 days time. I do 4 monthly now. Funny but I’d forgotten about it believe it or not. Fingers crossed and may your health continue 👍👍

User

Posted 09 Oct 2022 at 22:00

👍thumbs up to another good result ido4

Cheers

Bill

User

Posted 10 Oct 2022 at 21:00

Thanks PP, hope you are doing ok.

Ido4

User

Posted 10 Oct 2022 at 21:01

Thanks Chris, hope you are still doing ok. Fingers crossed for your PSA test.

Ido4

User

Posted 10 Oct 2022 at 21:02

Thanks Bill, hope you are well.

Ido4

User

Posted 04 Apr 2023 at 19:13

Quick update. Surgery 23/7/2015, salvage radiotherapy March/April 2017. Hormone therapy December 2016 to April 2019. Latest PSA tested 23/3/2023, still <0.1, always a great relief considering my oncologist’s view that I am incurable.

Still waiting to see the gastro team re my bowel issues………

Best wishes to all.

Ido4

User

Posted 04 Apr 2023 at 19:31

Ido4, great news on the PSA, hope you get the bowel sorted.

Thanks Chris

User

Posted 04 Apr 2023 at 19:36

Nice one and best wishes / good luck 🤞

User

Posted 04 Apr 2023 at 19:57

Good news re PSA. Hope they sort out yhe gastric issues. Have you been seen by anyone yet ?

User

Posted 04 Apr 2023 at 22:36

Hi Ulsterman, I haven’t seen anyone yet, I’m on a waiting list! I had a letter asking if I still wanted to be on the list to which I replied yes. My GP hasn’t been much help in expediting this either. All very frustrating.

Ido4

User

Posted 04 Apr 2023 at 23:32

Great news on the PSA.

Hope you get to see someone soon on the bowel issues x

User

Posted 01 Sep 2023 at 14:15

Hello Ido4,

I just wanted to thank you for your posts and updates. My PSA has risen above 0.2 post surgery and I want to learn about options and hear about other men's journeys. I hope you are doing well.

Tim

User

Posted 01 Sep 2023 at 16:24

Some physicians go like "Let's wait and check PSA again and see how it's going". Be watchful. When my hub got PSA 0.2 , two or three years after RP, that was just what the urologist said. Thankfully, a different urologist saw him the following appointment. At that moment PSA was over 0.3 and he was referred to onco. Then given PSMA PET SCAN, two spots clearly located, therefore easier to fight them. He was put in HT and given RT.

Still in HT . Last PSA this week 0.01

Next appointment with both onco and uro in 2 weeks.

Good luck.

User

Posted 01 Sep 2023 at 16:39

Thanks for the info. I'll keep that in mind.

User

Posted 03 Sep 2023 at 20:20

Hi Tim, sorry to read your PSA is rising. Did you have prostatectomy May 2022?

I am doing ok thanks. The salvage radiotherapy has left me with radiation proctitis which affects my bowel but I don’t regret having it as my recurrence was very high grade and I would have been on HT for life.
I had a PSA test 25/8/2023 so will get that result this week sometime.

Hope you can decide on your next move. Have you had an MRI to check out what’s going on?

Best wishes,

Ido4

User

Posted 03 Sep 2023 at 23:18

moved to other thread

Edited by member 11 Sep 2023 at 13:29 | Reason: wrong thread

User

Posted 08 Sep 2023 at 15:40

Latest PSA <0.1, great. My mean cell haemoglobin is slightly raised above reference range. Any idea what that could indicate?

Edited by member 08 Sep 2023 at 15:41 | Reason: Not specified

Ido4

User

Posted 08 Sep 2023 at 17:55

Ido4 , great news on the PSA ,long may it continue, no Idea on the haemoglobin.

Keep going mate.

Thanks Chris.

User

Posted 08 Sep 2023 at 18:54

Thanks Chris.

Ido4

User

Posted 08 Sep 2023 at 18:54

https://www.mayoclinic.org/symptoms/high-hemoglobin-count/basics/causes/sym-20050862

About hemoglobina raise.

User

Posted 08 Sep 2023 at 19:26

Thanks Lola

Ido4

User

Posted 09 Sep 2023 at 14:51

Hi ido4,

Great results long may it last, sorry i have never heard about the other result.

Regards John.

User

Posted 10 Sep 2023 at 09:58

Thanks John.

Ido4

User

Posted 11 Sep 2023 at 10:09

Great result Ido4

Best wishes, Arthur

User

Posted 11 Sep 2023 at 16:06

Thanks Arthur, hope you’re doing ok.

Ido4

User

Posted 08 Oct 2023 at 06:44

May I ask.... After your 2 years of HT, how long did it take for your hot flushes...muscle pain... brain fog.... and libido to come back ?

I pretty much been through the same scenario as you and just finished my 2 years HT. Hence my question...

User

Posted 09 Oct 2023 at 00:12

Originally Posted by: Online Community Member

May I ask.... After your 2 years of HT, how long did it take for your hot flushes...muscle pain... brain fog.... and libido to come back ?

I pretty much been through the same scenario as you and just finished my 2 years HT. Hence my question...

Well I can't see the original question [oops, maybe there wasn't one!] but from my experience the hot flushes went quite quickly, though I have to say that by the end of 2 years they weren't bothering me much. Muscle strength didn't just come back automatically like testosterone. It needs exercise but at least, post HT, the exercise makes progress. Brain fog ... hard to measure but I think there was a gradual improvement that at nearly 9 months post HT is back to normal. I'm not sure about that though. I'm a bit ADD and that adds an element of complexity. Libido, about 7 to 8 months. I haven't had a testosterone level test yet but I suspect the rise still has some way to go. I'm rather glad of that, it's a bit of a shock! I gained a max of about 7kg during HT but that's fallen back to about 2kg above normal. I didn't suffer from joint pain and some minor leg pain disappeared early after stopping the HT.

Jules

Edited by member 09 Oct 2023 at 00:15 | Reason: Not specified

User

Posted 20 Dec 2023 at 09:56

I haven’t updated for a while. My PSA blood test taken 11/12/2023 is still <0.1 which is always a relief. I am still having bowel issues. I’ve now seen a specialist (he apologised I’d had to wait more than 18 months to see him) who has arranged a colonoscopy for 6/1/2024 after a screening test raised issues. Hopefully nothing too serious…..

Ido4

User

Posted 20 Dec 2023 at 10:06

Ido4, another great result. Hope the colonoscopy doesn't show any surprises. Having had two preps but only one procedure, dab don't wipe 😄.

Thanks Chris

User

Posted 20 Dec 2023 at 11:10

Thanks Chris. This will be my fifth colonoscopy, I’m dreading the prep, dabbing certainly helps!

Ido4

User

Posted 20 Dec 2023 at 18:09

That’s what I like about this forum…we always seem to get to the bottom of it!

Really pleased your PSA is <0.1…I live in Hope that one day I will get that magic < sign in front of my 0.1.
I hope you get your bowel issues sorted🤞

Derek

User

Posted 20 Dec 2023 at 18:10

Originally Posted by: Online Community Member

Thanks Chris. This will be my fifth colonoscopy, I’m dreading the prep, dabbing certainly helps!

I suffered terribly with sore anus for many years for a number of reasons including persistent diahria. Had to have a colonoscopy and in the initial pre consultation the colorectal surgeon advised me to use Bepenthan nappy rash cream. I've used it almost every day since even when not needed. Hardly ever had a sore arse since and even when i do its sorted before it gets going.That's 7 years clear after over 25 years of pain. You can't use to much. If it's OK for babies bum it won't do you any harm.

Good luck with the results

Cheers

Bill

User

Posted 20 Dec 2023 at 22:36

Thanks Derek and Bill. Derek, I don’t have a prostate so the <0.1 is the only result I want to see. Anything above that is a problem. I’ve followed your story and hope things continue to go well for you. Bill, I’ll look to get some of that cream.

Ido4

User

Posted 26 Feb 2025 at 11:22

I haven’t updated for a year so thought I would share that in December 2024 my PSA is still <0.1 which is always a relief. Because I’ve had surgery, radiotherapy and hormone therapy I do suffer from side effects but I try to just get on with my life. It will be 10 years in July since surgery. My recurrence in 2016 was very high grade with PSA doubling every 4 weeks or so. My oncologist was convinced radiotherapy would be a waste of time and leave me with unwanted side effects. He was also convinced I had micro mets.

I feel blessed to still be here, enjoying life, holidays and now three grandchildren.

Best wishes to all.

Ido4

User

Posted 26 Feb 2025 at 12:22

Hi Ido4,

Great to see you doing so well long may it last and 10 years on is fantastic.I am at 8 years and six months so maybe we are becoming the old men of the site. I do hope our journeys help other members with their decisions too.

Regards John.

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