Treatment with internal pouch

User

Posted 26 Jul 2022 at 16:27

Have just been diagnosed and looking at various treatment options for someone with a surgically created internal pouch (instead of bowel). Does anyone have any experience of this and what would you recommend?

User

Posted 26 Jul 2022 at 17:56

Probably depends on what led to the surgical pouch - you should ask to see an oncologist and a urologist and make sure they have access to your prior medical notes before you meet with them.

If the reason for the pouch involved radiotherapy in the past, that may rule out radiotherapy or brachytherapy now. If positioning the pouch involved an abdominal cut and / or mesh, that may rule out keyhole surgery but not necessarily open surgery. Depending on the position of the pouch, you may be able to have a gel inserted to move the prostate away from the pouch during radiotherapy. You really need to talk to the specialists.

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

User

Posted 26 Jul 2022 at 18:51

Thank you for your reply , the pouch is in place of the large bowel and connects to the small bowell, this was due to collitus , i am writing in this forum because with all the scar tissue from this previous surgery , and its proximity to the Prostate my treatment options are limited , i have been reccomended to have a new less invasive treatment which is echo laser that is very new to the U.K. which has been pioneered in Italy for the last 5 years , so i am just trying to see if there is anybody out there in a similar position to me .

User

Posted 26 Jul 2022 at 21:34

I think if it has been offered, it is certainly worth serious consideration. We did have a member here fairly recently with an ileostomy - he wasn't considered suitable for RP or RT so his only option was hormone treatment. If I can find his thread, I will post a link for you.

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

User

Posted 27 Jul 2022 at 09:33

thank you, as i am new to this forum , can you please explain what R.P.and R.T. IS and how did he get on with hormone therapy ?

User

Posted 27 Jul 2022 at 12:10

RP is the surgery, radical prostatectomy

RT is radical radiotherapy, usually referring to external beam radiotherapy

Laser treatment / green laser / cryotherapy/ HIFU / FLA are all focal treatments rather than radical - the aim being to treat just the main tumour cluster(s) rather than the whole gland (radical). Focal treatments have fewer side effects because they are targeted but they are rarely curative - e.g they may need to be repeated in the future.

It seems that RP has already been ruled out for you.

I don't know how the other guy is doing until I find his posts but hormone therapy on its own is not curative and will at some point stop working.

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

User

Posted 07 Sep 2022 at 10:54

Hi Ronen i am in the same situation as you In 2001 had an Ileo anal pouch or J pouch as we all call them due to proctocolectomy having had ulcerative colitis and was diagnosed with prostate cancer June this year Gleason 3+3 and 3+4 and psa 3.7 with no symptoms, it was decided due to me having the pouch and low disease that active surveillance was the best option which I was happy to do, unfortunately for me my first psa test since diagnosis in August came back at 7 but I had incurred a symptom of slower urine flow so because the fact it had jumped so much so soon and the symptom as well it has now been decided I have a radical treatment, my appointment is on the 14 September to discus my options, but as we both now know surgeons seam a little tentative as to what to do with us with preservation of the pouch in mind, I have read several posts articles etc regarding the Brachytherapy treatment with people with ileo anal pouch and that the outcome has been good and with no problems for most, or HIFU or total removal these maybe be my options I go for unless advised otherwise, I am seeking another opinion privately which my appointment is today at Leeds.

User

Posted 22 Aug 2024 at 15:19

my husband is just waiting for a diagnosis with a PSA of 3.65 up from 3.60 a month ago…also no symptoms…he had HoLEP in 2018 for bph…and his PSA after surgery was 2.08… but no follow ups although we now know he should have been having annual PSA tests….the reason I’m commenting here is to ask if you would mind updating as to your journey so far as my husband also has a jpouch and has had it since 2014. Most grateful for any advice going forward. I’m terrified for his mental well being should he have to cope with not only a diagnosis of PCa but the added complications of his jpouch and the preservation of function whilst treating PCA 😢🙏

Edited by member 23 Aug 2024 at 20:19 | Reason: Not specified

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