First post here, concerned about post-op PSA levels

User

Posted 06 Apr 2016 at 17:43

Hi all,

I've been a member of various internet forums over the years - all to do with hobbies (in particular music and hi-fi) or work related (IT) so this is a different thing for me. I chose those for good reasons. I am looking for a bit of reassurance here really.

About me: I'm 56, I was diagnosed with prostate cancer last year (my PSA was 5.5) I had further tests, MRI then pattern biopsy (my Gleason score was 4+3) so action was needed.

I chose radical prostatectomy and had the operation last September (my surgeon is extremely well regarded).

At my first follow up consultation just before Christmas my PSA was 0.10. Two weeks ago I had another consultation, my PSA level was up to 0.15 so he asked me to have another test and told me that I may need a course of radiotherapy. This news hit me like a train, I had coped OK with the initial diagnosis and my treatment so far.

I have just discovered the result of that test (0.12). I had been unable to communicate with anyone at the hospital (which has been a major problem throughout my treatment, not impressed with that side at all - they seem to exist in the dark ages*) so I don't know whether further treatment is required yet or if it is a case of wait and see.

I eventually managed to speak to a nurse who reassured me a little but I am concerned that my levels are too high post operation and that they should not be going up. Should I be worried?

Thanks in advance

*which is a bit galling as I actually worked on their patient records IT system about 12 years ago so I do know that they have computers!

User

Posted 06 Apr 2016 at 18:21

Hi Simon,

Did you receive a histology / pathology report of your recent surgery?...

If not, you can ask your consultant for a copy.

Depending on the 'p' staging it may show there is a possibility that a few Pca cells have escaped microscopically and that RT is needed to 'mop up' those escaped PCa cells from the prostate bed.

On the other hand your last PSA reading shows the trend reducing, so maybe it will be a case of waiting to see if your PSA level reduces even further before any other action is required.

Best Wishes
Luther

User

Posted 06 Apr 2016 at 18:41

good luck with the results. I hope you manage to get some good news and reassurance

I know what you mean about communicating with hospitals. Our experience has been truly appalling. We have now "sacked" our so-called cancer nurse - not worth the effort - and are going to try to change hospitals. A shame as we liked the urologist but it is just too stressful trying to get any response. I really hope things improve for you

User

Posted 06 Apr 2016 at 18:43

Since your op you have had three PSA tests that were 'detectable' so although you haven't reached the official threshold that defines chemical recurrence, (that would be 0.2) I would hope that they will offer you adjuvant RT with or without hormone treatment.

As Luther says above, what was your post-op pathology? Did they identify any positive margins? Were any lymph nodes removed and were they clear?

It is devastating when a hoped-for 'cure' doesn't happen. However, RP with adjuvant RT tends to get very good results, so good that some hospitals have been trialling giving every man RT as a follow up to the surgery regardless of pathology or PSA. Your surgeon might want to wait for one more PSA test in three months before deciding whether to refer you to oncology but personally, if you were my partner/brother/friend I would want to get advice from the oncologist now rather than later.

Were you allocated a nurse specialist? If so, could s/he arrange a referral for you if you wanted one?

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

User

Posted 06 Apr 2016 at 19:01

Hi Simon,
Communication with the NHS is one of our concerns. I cannot understand why it is so archaic, it really frustrates us. My OH has PCa, we live a long way from out hospital & surgery. Phone calls are slow inefficient and not a good record of communication. I could go on.I have after some patient pressure from me got the practice manager's email address, to send info and make appointments. I am aware that people in England can access their notes, but here in Wales, we don't have that facility yet.
I hope your treatment goes well... Keep plugging away at them for an online communication system.
All the best.
Leila.

User

Posted 06 Apr 2016 at 19:01

I had RP carried out in August and my PSA test was 0.2 in Nov, 0.3 in Dec and 0.3 in Feb. I am due another result on Monday. I am not an expert in all of this but my Onco explained that if the PSA levels rise quickly then it generally indicates that the cells are not in the prostate bed and therefore RT could be a waste of time but HT would be the way to go. If the PSA rises slowly then the cells are most likely to be in the prostate bed in which case RT would be effective as they would know where to target it.

The other alternative is RT and HT which is a scatter approach. We have chosen not to jump in early but to have a series of PSA readings to try to give us a steer with what to next. We agreed that this Monday is crunch day where we make our decision.

I am not saying that this is the right approach but it is ours.

It is possible for the PSA readings to stabilise or drop back but it would be good to be able to discuss what is happening with your onco which helps keep you in the driving seat.

All the best

Kevan

User

Posted 07 Apr 2016 at 02:54

Unfortunately, there is often a difficulty in locating cancer in these circumstances when PSA is low but increasing. If the cancer cells are distributed it can be very difficult to see them on a scan, even a high definition one but there must come a point where this is worth doing though sometimes RT and or HT is given anyway.

Barry

User

Posted 11 Apr 2016 at 09:38

Thanks to everyone who has taken the time to reply. I was surprised to see so many detailed responses so quickly. I guess it is me who is not communicating now :)

I am still waiting to hear what happens next but have to get on with life, I'll worry about the future when I have some certainty.

One of the problems with my treatment is that it is split over two hospitals and communication between the two Urology departments is pretty woeful, even they don't seem to have any direct communication channels. The hospitals work together a lot for cancer patients generally not just those of us with PCa. I have told the hospitals what I think about it.

As for my post operative results, the margins were clear and as were the lymph nodes. They also had to remove the nerve cluster down one side which has made my recovery slower than I had hoped.

User

Posted 11 Apr 2016 at 21:34

Hi, Simon.
I'm 4+3 too, 3 weeks post-op. I haven't got my post-op pathology yet, and am due PSA end of this month. I'm 50.
Your latest result is good news in that it went down! in the short term, I would think you could just wait for the next due PSA.

'What is required' is really up to you. They might offer you treatments or advise you, but I suggest taking lots of time to look into the risks and benefits of all options, including holding back and seeing what happens, before you make a decision. As well as watching the PSA, I would also consider current symptoms, and what you want from treatment. Your doctors should be able to help you think about what might happen without intervention so you can compare the likely outcome of treatments to that.

I could well be in your position in a few months' time, so I am trying to prepare a bit by thinking about the issues you raise. Having had the surgery I find myself keen to avoid treatments that cause life-changing side effects. I try and tell myself that I chose the prostatectomy, even though I didn't chose to have prostate cancer.

Thankfully I have a great named nurse with whom I am in email contact.

All the best,

Henry

Notification

Join the online community now.