My first psa reading of 30

Hi Marvel,

When I was diagnosed with a PSA of 36 my GP phoned me to tell me I almost certainly had PCa. he was very blunt about it and didn’t really show much empathy. However that’s not really important, what matters is that you will now be on a pathway to diagnosis and treatment, and I can’t fault any of my treatment here in Fife. It was very swift and well organised.

Try and keep yourself busy as waiting is always the worst…avoid Dr Google if you can. I was on a curative pathway so you may well be too. Always try and keep a positive attitude, it really helps get through this and if you need support seek it out from somewhere such as Maggies.

Good luck on your journey!

Derek

I didn't find out I was T3B until after the surgery (RARP) and even though the PSA was "<" after surgery, it started to rise and a year later I started SRT which seems to have done the job.

Even though it wasn't the ideal pathway, I am still glad to have the darn thing out of me :)

I am 62, never even entered  my head that I might  have PC.

I'm not really  sure of how bad it is in real terms. I spoke to the 2ww team and they said I need a mri and biopsy to confirm. 

Has anyone  had similar and not been diagnosed with PC. other than i get up one a night for the toilet  everything  else seems ok.

Just scared my self silly thinking class 4 and terminal ?

Thanks

M , I was diagnosed with prostate cancer at the age of 62 with a PSA of 7.7. At the time I was working with a guy who was getting PSA results sometimes in the region of 200, despite several biopsies they didn't find and cancer in him. That was over 10 years ago.

I would not pay too much attention to the 1,5,10 year figures, on diagnosis my consultant said If they did nothing I would still be here in 10 - 15 years.

As regards the financial aspect a crystal ball would be a great asset.

Stay positive until you have all the relevant info, I assume you don't have any previous PSA test results.

Thanks Chris 

Edited by member 09 Jul 2024 at 13:37  | Reason: Not specified

Hi lads, thanks for the support a busy 2 weeks,  ultra sound, mri, CT, scan and bone scan. Results  are back from the MRI,  consultant say its PC I have a 3cm growth that is protuding, on one side,  but not spread to the nodes, bowel  etc so good news, just waiting  on the other Results  bur he said the MRI is the main one. I'm having a biopsy  in the next 10 days, then he hopefully  plans to start treatment. 

Unsure of how long be fore treatment,  despite  them saying  it will be soon.

So hope on the horizon,  thanks, I'll keep  you updated 

If it's gone into the seminal vesicles, you get better outcomes using radiotherapy, so they don't usually offer prostatectomy in this case.

Marvel. I had a T3b diagnosis and the MDT suggested surgery was probably the better option. It just seems to vary with what area you are in or maybe my surgeon was very influential on the MDT. I did end up opting for the surgery, mainly because I didn't fancy the three years of HT. I was also warned that SRT was a strong possibility following surgery and that turned out to be the case. I'm not making any recommendation here either way but if you are thinking of surgery you need to find out whether the surgeon believes it can be nerve sparing. Chris

Biopsy today, went OK, no pain also got the results of the CT  and bone scan which came back as negative  for any spreading, which tied in with MRI so now I have to wait for the results of how aggressive. 

Then hopefully the options available, just a waiting  game

Hi Marvel,

glad it went ok, I won’t say try and relax whilst waiting on the results, but keep yourself busy and be good to yourself to keep your mind from thinking the worst.

Good luck with the results.

Derek

Hello mate.

Your heart condition is probably why they've ruled out the op. I had badly blocked arteries and there was a prolonged debate as to whether my heart would stand up to the stress of surgery. I believe during  robotic surgery your feet are higher than your head which puts even more pressure on your heart.

Eventually my cardiologist persuaded them that I was suitable for surgery. Everything went well but, just as if to prove the concerns of the anaesthetist were justified, I had a minor heart attack two months later.😁

I'm the same, over the last four weeks things have progressed  quickly  I think, I've had every test and seen 3 different  consultants, all beit private  just waiting on the mtd decision,  the meeting  is today...not sure if I can make the decision , I know it sounds  daft but part of me says whip it out, at least the main culprit has gone mine is T3a so it not spread or at least they can't  see it. But there is always the option then of having to give rt. So part of me thinks just have rt and ht, it's longer but I don't think  there are so many  issues .

I just don't know

I wasn't told about the potential penis shrinkage either and only found out after the event. Yes, it does look a bit smaller in the erect state these days but it has always been more important to me is that it still works. With a bit of help from Tadalafil and a cock ring it is just about good enough for penetrative sex. My wife reckons it is a better fit so I suppose I shouldn't complain.

Hello mate.

What I found interesting about the research is how they measured the penis using stretch length. I suppose most blokes have used flaccid length or erect length as standard measurements. I'd never heard of a stretch length penis measurement before. 

I told my wife and she said "I'm glad that they dont use stretched boob lengths for ladies!" I cheekily agreed. 😁

I find it incredulous that so little research has been done on whether or not prostatetectomies affect penis dimensions.

Likewise there is very little scientific evidence on the efficacy of pumps for penile rehabilitation. According to the research I cited the difference would be minimal and that seems to be the general consensus of scientific opinion regarding the benefit of pumps.

The only penis exercise I've done over the past year or so is 5 Invicorp injections a month. I think I may have lost a a bit of length but my girth seems to have improved. Generally I'd say my erections are about 80% as good as they were pre op. 

I was terrified by tales of atrophy if you didn't use pumps. I dreaded the thought of my todger shrivelling up and dropping off like a lamb's umbilical cord. Fortunately, as yet, these fears have not materialised.

Edited by member 26 Aug 2024 at 11:56  | Reason: Typo

The problem is, you can never guarantee, with either surgery or RT/HT or surgery, what side effects you'll get. I did lots of research of both treatments and picked RARP because it only involved, if all went well,  just one overnight hospital stay. The thought of having 35 hospital visits in 7 weeks for RT,  I felt was too long a process for me, plus I'd have been risking the additional side effects of HT.

My younger brother had PCa 3 years earlier than me, he selected RT and HT and appears happy with his choice. I'm happy with selecting RARP.

The only thing I wish I'd given more consideration to was the chances of recurrence. I never thought it was mentioned enough during consultations. I think many blokes reckon that when they select surgery and have 'the bugger cut out' they think that's it sorted, but it often isn't. The risk of recurrence then comes into play. However the recurrence risk also applies to those on RT.

When you compare the outcomes and side effects of thousands of patients and side effects, there is very little difference between the two radical treatments. However, how each treatment affects individuals can vary enormously.

I joined this site after my surgery. In a way I'm glad I did, because excellent though it is, in my opinion, it definitely focuses and is very biased towards poor outcomes. The vast majority of posters here, have had problems, no matter what treatment they've had. This unbalanced picture can cause unnecessary concern. I suspect the vast majority of PCa patients treatments go well but we rarely hear from them.

The forum is superb for giving support and a lot of peer reviewed research can be found on here. However I think care should be taken when using personal experiences on here to make treatment decisions.

Edited by member 29 Aug 2024 at 16:04  | Reason: Typo

Hello mate.

I haven't, without the help of injections, felt stiff for years. ☹️

Joking apart, I was only on Bical for a couple of months. The only side effect I got was sore nipples but I believe your symptoms are quite common for those on HT.

Edited by member 05 Sep 2024 at 19:06  | Reason: Typo

Hi Marvel,

Yep I think HT does mess with your sleep patterns. I find it hard to fall asleep and have a patch around 2am when I wake and cannot sleep again for about an hour or so. We also invested in a great mattress, so I can bounce around, throw covers off and pull them back on all without disturbing the wife (which is not a good thing to do!).

You mentioned also getting the munchies, that has very much been the case for me. Put on a stone when first started, and so far have not got back to my starting weight!

Stick with it, think of the fact that is has "put your cancer cells to sleep" as my Oncologist put it. Then when they are least expecting it, hit them with the radiation!! :-)

Good luck. You can beat this!

David

7 days Into radiotherapy, all going well, still not sleeping but no other real side effects  of radiotherapy or hormone therapy. 

Fi gers crossed it stays that way