Severe pain above the anus and left glute. What could be the reason?

[Cheerr]

My dad is on Xtandi for the last 7 months and he's been tolerating it quite well. His bloodwork is normal and his PSA is 0.04. (diagnosed with skeleton mets)

BUT for a week, he has severe pain right above the anus and the left glute along with urine retention and bowel problems - cannot evacuate fully. Even tramadol/acetaminophen isn't really helping with this pain anymore.

The Pelvic MRI results are:

1) Mild L5 compression

2) And all the bone Mets that were present during diagnosis as well

We also got a Pelvic Ultrasound that showed Severe Urine Retention, and since then he has been taking Rapaflo (Silodosin) and has a little improvement.

We also spoke to a Radiologist who suggested 10 sessions of radiation (10 mins each).

But my MO doesn't think the mild compression at L5 could be causing this kind of pain. So radiation may or may not be the solution.

So it is not yet clear what is causing the pain? Has anyone faced a similar issue?

[LearnAll]

One thing is clear that mild compression deformity at L 5 does not explain his severe symptoms..as concluded by MO. So what can be the reason? Are bone mets big in the area which can compress nerve supply of rectal area and bladder ? MRI report above does not clarify that. To me it seems like a nerve compression issue which can be mechanical pinching of relevant nerves . Unless there are active bone mets in area, radiations may not be the solution. It is complex question and only orthopedic or neurologist can probably figure it out.

[Cheerr in reply to LearnAll]

Thank you LearnAll,

Yes couple of possibilities have to be explored.

Will try to visit the ortho for a option too before we do radiation.

[arete1105]

This could be soft tissue issue. Check his piriformis muscle (in the glute) Does he also have sciatica?

[Cheerr in reply to arete1105]

We thought he had sciatica for months before his diagnosis. Because the cancer is spread to his bones and the pain felt is almost the same as sciatica.

But he does not have sciatica diagnosed currently.

Usually sciatica comes with a sharp pain from the buttocks down to the entire leg. And dad doesn’t have any pain in the leg now.

[Kestrel5]

Sorry about the circumstances you’re going through. I have been on Xtandi for three years and have not had any pain issues. My mets have all been in the lungs. Sorry I have no insights for you.

[Cheerr in reply to Kestrel5]

Dad has mets in the bones. So some pain is always there. Just that it got intense now so gotta find out why.

[Turt713171]

Consider a colonoscopy

[LearnAll in reply to Turt713171]

Cheer, I think Turt71371 is suggesting Colonoscopy to rule out Colon cancer. Before subjecting Dad to an invasive procedure like colonoscopy, you should check a biomarker in blood called CarcinoEmbroynic Antigen (CEA) . If this come in normal range ,he might not need Colonoscopy. In Colorectal cancer, CEA gets elevated.

[Cheerr in reply to LearnAll]

Thanks for the info. It does look like a nerve issue though. Numbness, pain and also nerve issues can affect urinary and bowel movements. So hopefully it can be solved soon

I’ll also check with doctor if he needs CEA 👍

[Cheerr in reply to Turt713171]

Thank you will check with the doc..

[Hidden]

Cologuard...non invasive colon cancer test....your pcp could authorize it

[Cheerr in reply to Hidden]

Thank you will check with the doc..

[Hidden in reply to Hidden]

I think cologuard has a disclaimer that it can't be used when patient has adenocarcinoma (i.e. prostate cancer).

[Hidden in reply to Hidden]

Why would that be the case?

[Hidden in reply to Hidden]

From their website:

"Cologuard should not be used if you have a history of colorectal cancer, adenomas or other related cancers"

I'm assuming you would get a false positive for colon cancer if you had "... other related cancers" like prostate cancer(?)

"An adenoma is a benign tumor of epithelial tissue with glandular origin, glandular characteristics, or both. Adenomas can grow from many glandular organs, including the adrenal glands, pituitary gland, thyroid, prostate, and others..."

I could be wrong, but this is what I am assuming.

[bmj94]

Consider asking your MO to do a Spinal MRI to the LumboSacral area.

[Cheerr in reply to bmj94]

Thank you! I will ask for this

[Bigblock]

Hi Cheerr, I’m not sure I can be much help as I haven’t been diagnosed with what your asking so I can only say about my own experience, but I’ve had at times over the last couple of months I’ve had severe pain to my left glute, pain around prostate area, pain to right leg, lungs and was diagnosed with shingles down right arm and urine retention which last year had to self catheterise and went to hospital as I couldn’t pee, but my left glute got so bad that I would get out of bed to lay on the sofa and if I had to move I would hobble slowly in pain, my GP put me on Tamfrex XL 400mcg for urine retention, I’ve been on Bicalutamide 150mg for two weeks, I was taking Aspirin and Paracetamol for pain which helped slightly, but from my own experience I got Naproxen 500mg for pain and that has seemed to help the most, apparently it’s anti inflammatory, it worked best for pain and urine retention although Tamfrex does help a little, sorry if I can’t be more help as I haven’t had a proper diagnosis, but I feel I might have hurt myself trying to do to much as I find it easy to do now but pain is slowly going away now

[Cheerr in reply to Bigblock]

Hi,

I’m sorry you had to go through so much pain and I’m glad the pain is slowing going away.

It is frustrating to see all the doctors not able to give a proper answer as to what could be causing the pain.

My dad has severe urine retention too and is currently raking Rapaflo which is like Tamflex. It has given him a small improvement but not much.

My dad has been given pain killers - paracetamol and tramadol and gabapentin.

Overall a small help but nothing has cured the whole issue yet.

Has your urine retention issue resolved and how long does it take to see a major change?

[Bigblock]

Hi Cheerr an update with pain, I was told yesterday that I have mets now so that’s probably where the pain is coming from if that relates, my urine retention was at its worse at the end of last autumn where I had to self catheterise cos I just could not go, went to hospital to see why I couldn’t go so they did tests for urine infection but that came back negative, so what I found worked for me was, I got a pee bottle that you would use for camping then as soon as i felt I could go I went, cos if I held on to it at all it became painful to go and it was harder to go, so doing that I could only pass 150ml-250ml max which felt like I had a full bladder and I would get out a quarter at a go, but I would do that throughout the day and it felt like I gradually emptied my bladder but not entirely but much better, it seems worse at night when I laid flat, so I managed it like that until recently as I wasn’t on meds, then had pain for last couple of months so I took the meds I said about and that’s when I noticed it was easier to go and I was passing more, up 500ml, so that happened quite quickly, maybe a week of taking the meds, and as I was saying the Naproxen 500mg to me made the biggest difference on being able to empty my bladder better with a much better flow also and I don’t have to go as regular, I mentioned this to my clinical nurse yesterday and she agreed that it’s probably because there anti inflammatory, so maybe it might work the same with your dad if he could get something that’s anti inflammatory, I hope this helps and your dad can get some relief cos it is horrible.