I'm interested in conversations about and I want to talk about
Know exactly what you want?
Show search

Notification

Error

Recent Diagnosis and Biopsy Side Effects

User
Posted 15 Jan 2021 at 12:49

Well I finally had my Trans-Perineal Biopsy done under GA on Jan 4th. Initial results are in and apparently my Gleason score is 6,  T1a, L0 M0. So the bad news is I do have PCa but seems to be low grade and localised. I am waiting for a chat with my Consultant on 19th Jan regarding next steps. There are two issues I have at present. Firstly, my PSA at the beginning of diagnosis (in October) was 17.5 so seems high for such a low grade tumour. Secondly, I am now 10 days on from the biopsy and at first things were OK but recently I have felt very tender around the perineum which makes sitting painful. Also I am frequently being woken up by painful erections at night. They do go down in less than an hour so not classed as an emergency but they are starting to affect my sleep. Has anyone else experienced this after biopsy?

User
Posted 15 Jan 2021 at 13:15

I also had a suspicious mismatch between cancer found, and PSA. My PSA was 58, although my staging and gleason were higher than yours. You may get booked for a bone scan (that's almost routine in some hospitals so being booked on it isn't anything sinister). I also got booked for a PET scan, but that never happened and got swapped to a full body MRI scan instead, which came back clear. So if they think there's a big mismatch, you'll probably get some more scans.


As for the late onset pain, I do wonder if you got an infection in the penis bulb. I think you should raise this with urology as a matter of some urgency. It would be worth taking your temperature, and if you have an infrared thermometer, you could also do it locally on the perineum. It might be useful information to supply when you contact urology. If you can't get though to urology, try your GP.

User
Posted 15 Jan 2021 at 13:50
Happened to me, too. My PSA of 31 didn't really fit in with the low-grade cancer the biopsy found, and although the full body MRI came back clear, there was a suspicion of undetectable micromets migrating outside the prostate. Because of this I was strongly urged to have RT, which was the "wide beam" variety to zap the whole of the pelvic region.

As far as the other stuff goes, your perineum has been turned into a pin cushion. It takes a couple of weeks for the bruising to subside. I turned black and then the most lovely shades of purple, orange, etc. I have a photo album of my phone charting the daily progress - something to while away the winter evenings with. I wouldn't worry about it.

Best wishes,

Chris
User
Posted 16 Jan 2021 at 05:20

Originally Posted by: Online Community Member
I turned black and then the most lovely shades of purple, orange, etc. I have a photo album of my phone charting the daily progress - something to while away the winter evenings with.


Yes, sometimes I think it’s a shame we can’t put photos on here, as I have one of the transperineal procedure itself, with the patient in stirrups, legs akimbo, with an ultra-sound probe stuffed up his rectum, and like you, rainbow-coloured pix of my perineum after it.


Perhaps it’s as well no photos are allowed...😉


Cheers, John.

User
Posted 16 Jan 2021 at 15:16

Thanks for your replies, much appreciated. I contacted my Urology Nurse and she passed me to a doctor who didn't seem too concerned by the late onset pain or erectile issues. He told me to come in to the hospital if I got a temperature (which is normal BTW) and to dial 999 if my nocturnal erections last for more than 3 hours. The discomfort seems to have eased today and I was only woken twice briefly last night by Mr Percy so starting to relax on that front.


Andy - Did they say the full body MRI is as accurate as a PET scan? I might ask for one at the meeting on the 19th.


Chris - Surely it's highly unlikely low grade PCa cells would have metastisised? Did they give you any kind of choice over the wide-beam RT vs active surveillance or surgery?


Regarding the high PSA vs low grade biopsy thing. I guess it is possible for them to have missed the locus of any tumour but it was an MRI targeted biopsy (not real time) and they took 9 cores on the dodgy looking side (15 cores total) so there is that. I guess I'm just a little worried about being over treated based solely on the PSA score having read lots of articles on this very subject... Then again, the downside is that you'll miss something.


This ride sucks - can I get off please! :) 


Cheers, Jon.

Edited by member 16 Jan 2021 at 15:18  | Reason: Added name

User
Posted 16 Jan 2021 at 16:24

Originally Posted by: Online Community Member
Andy - Did they say the full body MRI is as accurate as a PET scan? I might ask for one at the meeting on the 19th.


They said it was more accurate, but I'm skeptical. The PET scan would have been a Choline PET scan at that time (PSMA is more accurate). On the other hand, the report from the MRI showed they'd gone through my body with a very fine toothed comb, and picked up every niggling little thing, about half of which I knew about, and the other half I didn't. There was nothing serious.


I was really intrigued by my full body scan. It stopped above the knees and excluded the arms (if I'd known I would have tucked my arms in closer to my body to get them in). I got the imaging, and spent many hours looking through my body in 3mm slices, and found it fascinating. It's on my laptop, and various other people have found it fascinating too, even my GP! When I next saw my oncologist, I said I was very interested in the MRI scan, and would it be possible to go through it in detail with someone who could explain it, just out of interest? He said the radiologists are always complaining they never see their patients from the outside, and the consultant who reported on it would love to meet a patient, so he fixed it up for me to do so. My oncologist wanted to come too, but in the end, he couldn't make it.


The consultant radiologist went through the scan with me as he had done originally to report on it. He starts at the top of the skull, and works down very methodically. He's looking at the bone and the soft tissues. I asked him about some of the things he reported on, such as a few white matter signal anomalies in a couple of parts of the brain. He said they are TIAs (mini strokes), and I had significantly fewer than they normally find in someone of my age, so nothing to worry about. He'd commented on some of my vertebra disks being dehydrated in the report, and this explains my back-ache when I first wake up (I didn't think it was prostate cancer, but it's nice to know). One vertebra shows differently, but he could tell it was a fat deposit in the bone, not a met.


One of the comments in his report really amazed me. He commented that my breast gland tissue didn't match on each side. He hadn't known, but I'd been on bicalutamide and got breast gland growth, and so had started taking Tamoxifen. This reversed the breast gland growth, and it so happened that when I had the MRI, it had almost completely gone on one side but not yet on the other, and he'd noticed that. I told him the reason when I saw him. I also told him my liver didn't like the tamoxifen much and had pushed up my ALT level, and given this, he could get his imaging software to calculate the fat content of my liver in the image. It was 8% and should be 5%, so yes, the Tamoxifen was giving me a mildly fatty liver, which was the cause of the raised ALT level. It was fascinating to tie together all these loose ends, and both he and I loved doing the session, and I felt very privileged. (This was all on the NHS, not private.)


Originally Posted by: Online Community Member
Chris - Surely it's highly unlikely low grade PCa cells would have metastisised? Did they give you any kind of choice over the wide-beam RT vs active surveillance or surgery?


It's less likely, but not impossible, possibly due to there being a tiny amount of higher grade which wasn't picked up. Generally, they use the risk level to decide the likelihood of micro mets, and that factors in initial PSA, gleason grade, and staging, not just the gleason grade.

Edited by member 16 Jan 2021 at 16:32  | Reason: Not specified

User
Posted 16 Jan 2021 at 19:06

The issue in my case was that the biopsy results (mainly G3 with a tiny amount of G4) just weren't consistent with my relatively high PSA of 31, so the concern was that there was something going on that they couldn't see, hence the strong recommendation from the MDT to have RT rather than surgery. When a surgeon who loves nothing more than wielding the scalpel advises you not to have surgery, it seems sensible to take heed.


BTW when I had the "full skeletal scan" MRI rather than a nuclear bone scan I phoned the PCUK nurses to ask about it and the nurse I spoke to told me that it was regarded as the "gold standard" for detecting bone mets these days, and can pick up smaller mets than the nuclear stuff.


Cheers,


Chris

 
Forum Jump  
©2024 Prostate Cancer UK