Prostate Cancer

[David Ovenden]

I trust that everyone is staying well during this extended time of Covid precautions and pressure on the NHS. Hopefully none of you have had your treatment cancelled or postponed. Thankfully all of my appointments have happened as scheduled. My last blood test results (18 months after radiotherapy finished) showed the lowest ever PSA of 0.04. so I'm very grateful for the treatment I received which thankfully seems to have been successful.

My advice to anyone with prostate concerns is to contact you GP and don't put it off. Prostate cancer can be treated successfully provided its not diagnosed too late.  It was almost too late for me- I was extremely fortunate.  Its so much better to get checked early, so please don't put it off!

 

 

[DaveyP]

Hi David,

Good to hear your PSA is so low after the treatment, I'm currently having the same treatment and the hormone side effects are just kicking in.

 

My radiotherapy is scheduled for June and I can't wait to get it all over with, it is encouraging to hear others that have been successfully treated, I hope you remain in good health for the foreseeable future.

 

All the best,  Davey

Edited March 18, 2021 by DaveyP

[David Ovenden]

42 minutes ago, DaveyP said:

Hi David,

Good to hear your PSA is so low after the treatment, I'm currently having the same treatment and the hormone side effects are just kicking in.

 

My radiotherapy is scheduled for June and I can't wait to get it all over with, it is encouraging to hear others that have been successfully treated, I hope you remain in good health for the foreseeable future.

 

All the best,  Davey

HI Davey,

I wish you all the best with your treatment. I remember being very keen for my RT to start too.

Yes, the hormones do have their effect! I was on them for 21 months in total as I had a very aggressive type of cancer. But I have now finished having the injections and I'm waiting for the hot flushes to stop. I'm told they will eventually! However, I'm not complaining as the treatments (RT plus hormones) have been very effective.  

Keep positive and keep up with the modelling. 

All the best

David

[Andy J]

Well your doing far better than me David as my psa is around 0.3 after 14 months following RT.  Still having to get up at least once or twice a night although I do take Tamsulosin to increase the flow rate. Would like to find a permanent solution to this issue as don't like the thought of having to continue this medication for life.

. 

[David Ovenden]

1 hour ago, Andy Joyce said:

Well your doing far better than me David as my psa is around 0.3 after 14 months following RT.  Still having to get up at least once or twice a night although I do take Tamsulosin to increase the flow rate. Would like to find a permanent solution to this issue as don't like the thought of having to continue this medication for life.

. 

Hi Andy,

I'm not any sort of expert in these matters, but certainly 0.3 is a very low figure for PSA. I imagine your doctors are pretty happy with a PSA that low. 

I had a T.U.R.P (before my radiotherapy) and  that greatly helped me with the frequency problem. Obviously it is not appropriate for everyone and every case is unique. However, for me it brought about a rapid return to pretty much normal (well for a 65 yr old anyway). I now only need to get up occasionally at night (and then only once) so it has been very positive for me. 

All the best,

David

[Andy J]

Yes David my oncologist was happy with my PSA but also gave me no indication that a TURP would improve things. Will broach the subject again when I get my next review in two months.

[Basil]

Hi, well I'am one of the lucky ones . I say that as when tested a couple of years ago they didn't find any cancer , just an enlarged Prostate !!!!.

It's been getting worse since, have to pee at least once an hour 24 hrs a day , testicular pain and lots of pressure on my bladder, hence the frequentcey. Also the pain of pressure on my bladder. Good job we are in lock down as I dont feel so bad about being unable to stray to far.

I am a bit annoyed as since its diagnosice they have done nothing. According to the hospital the rectal examination was carried out due to my reports of blood in urine and as it turned out negative they did nothing about my exploding painful  prostrate !!!! I have been on to the Doc many times but at last he's refered me for surgery and am waiting for a TURP.. Had a phone consultation with a surgeon , or what ever he is and he's apoligised for the long 2 year delay adding that it must be quite large now!!!, however it looks like something will happen this year.

So a warning dont sit and do nothing, ANY symptoms then do something straight away.

 

Bas

[Martian]

Basil that is pretty horrendous to hear I can only hope you get a positive outcome from future treatment.

[David Ovenden]

Basil, very sorry to hear that your treatment has been so delayed.  I hope you get an early date at the hospital and the appropriate medical  intervention.

[Basil]

I regard myself as one of the lucky ones, that at the moment I am cancer clear. They have made it clear that they will examine the bits they take away to make sure. I feel very positive that at last I can make my way back to some sort of normality, but they have said that it may take 6 months and is likerly to get worse before it gets better. They nick name the procedure as a 'Rebore'. So got to laugh about that . At least it may give me an excuse to build more during that time!!!

Bas

Edited March 19, 2021 by Basil
spelling

[Craig Carr]

On 18/03/2021 at 12:11, Andy Joyce said:

Well your doing far better than me David as my psa is around 0.3 after 14 months following RT.  Still having to get up at least once or twice a night although I do take Tamsulosin to increase the flow rate. Would like to find a permanent solution to this issue as don't like the thought of having to continue this medication for life.

. 

That’s a great score Andy.  Mine was 0.2 ..6 months after surgical removal of the prostate  ...  so if yours is that using RT  I would be very happy 

 

pleased this thread is still around and prominent and getting the awareness message out there  ....  I probably owe my life to it 

Edited March 19, 2021 by Craig Carr

[Andy J]

Similar thoughts Craig as it was only by chance my elevated PSA was picked up. Had not seen this thread until I started my path on the possible treatment options.

Elected not to have surgery as did not want the chance of the possible side effects. Trust you are now fully recovered.

[Basil]

Could you expain the PSA score and what it means please.

Bas

[Craig Carr]

1 hour ago, Basil said:

Could you expain the PSA score and what it means please.

Bas

Hello Basil,

 

Prostate specific antigen (PSA).  there’s a good article here on the nhs website that should give you a little insight 

 

Quote:-

 

PSA is a protein made only by the prostate gland. Some of it leaks into your blood, but how much depends on your age and the health of your prostate.

 

If you're aged 50 to 69, raised PSA is 3ng/ml or higher

 

Mine was 6.7 so higher than recommended by nhs, but word of caution it’s quite an unrealiable test, certain factors can give false positives.

 

But my doc advised me to start the ball rolling with a DRE, then an MRI.   Ultimately leading to a biopsy and positive cancer confirmation.  But caught early enough that I could have it removed.

 

Andy, thank you, I think all is well almost a year later.  I’ll be due my second six monthly PSA re-test anytime now.

 

Craig

 

 

Edited March 19, 2021 by Craig Carr

[Martian]

I,m so pleased I started this thread and thrilled it has made a difference good health and happiness to all you guys and continue to spread the word 

[David Ashby - Moderator]

It prompted me to get myself tested Martian, hopefully a good many others too. Thank you. 

[Roger T]

Martian,

 

Just revisited this site (after a long time off) and, like many others, want to congratulate you on starting the thread all those years back. Looking at the number of contributors shows the impact you've had, both giving a forum for folk to share their experiences and feelings (I'm in there somewhere) but also in informing others and encouraging them to get themselves checked out. Well done sir.

 

From my side, the PC potential time bomb is still there and ticking, but very quietly and at a slower pace. You may recollect I took the 'Watchfully Waiting' decision after my Gleason 6 assessment was made with regular checkups (PSA, MRI's) being used to keep an eye in things, assisted by Finasteride being used to hold the size of my prostate in check. All has gone well since I posted in 2019, although my increased body awareness did lead to the spotting and removal of an early BCC - basal cell carcinoma - on the left hand side of my neck. Comes from flying facing west so much!

 

One thing I did do, both for my use and for my oncology team, was to graph up my PSA scores in an easy to view guide. I was told it was quite useful, as it saved them tracking back through the multitude of notes in my file!

 

 

These cover the years since I first presented (at age 61 in 2012) and track the fairly steep rise to when PC was confirmed (2014), the prescribing of Finasteride to control the PSA level (the gap in the graph, a drop to nearly a half), a concerning spike in 2017 (leading to biopsies & MRIs), then the steady decline until last month's PSA test. The black line shows the trend, which is rather reassuringly downward. This graph is obviously personal - others will start higher or lower and have different results.

 

Once PC was confirmed, I had the surgical/radiation/wait options and I took an informed decision to monitor and wait, based on discussions with my consultant. That has worked out ok for me, although I suspect the Finasteride side effects have made me more emotional. Good news, though, I've not had to cry at my own funeral!

 

Basil, you asked what the PSA levels mean and Craig steered you to the website to give you more info, but generally, your PSA count seems to remain steady in younger years (to around 40-ish?) then slowly creeps steadily up with age. What interests doctors is when it changes significantly in a relatively short period of time (it's not the only measure, but still a useful one). As you can see, mine ramped up over 2 years which, coupled with a family history (brother and father), was sufficient reason to get tested further. From a start of 4.84, my current number is 2.07.

 

Roger T

 

Good on you, David. Just a thought, might there be room for a note in RCM&E issues promoting Prostate Cancer testing? I'm sure CRUK would be interested if you need help with copy.

 

 

[Basil]

 Thanks Roger.

After a long build up got a biopsy done in 2017, no cancer but enlarged. Been in trouble ever since, on & on. Cutting a long story short called in for a TURPS, commonly called a 'Rebore'. Rebore means exactly that , ooooch makes everything change places just thinhing about it .Told it was so large would have to have 2 procedures. (Can only carry out 1 hour of work because of the strain on your bladder). Actually was on the table ready for action and Bingo, 'Sorry cant do it becuase of >>>>>>>>>>>>>>>>>', was I blitzed. I have really suffered for some time, must be near a Loo etc.

I am now under test for another 'Complaint' as yet cause unknown, but must be sorted before I can have any form of aneasthetic. After all the time spent in isolation and covid test before each test , all the sleepless nights running to the loo etc

Cant remember being so down, just keep thinking how lucky I am that its just enlarged.

Oh well keep going, hope its nothing to serious.

 

Bas

Edited May 5, 2021 by Basil

[Martian]

It is so heart warming to know that this thread has had a positive benefit . My latest PSA test showed a slight increase to 5.7 nothing to be alarmed about but getting up in the night between 3 and 5 times is a bind coupled with the slowing flow rate and discomfort necessitating a 5min sit before going back to bed. PC nurse wants me in for a flow test and then possible TURPS not keen on that just have to weigh up the pros and cons when the time comes.

[Basil]

Martian, TURPS sounds bad when you think about the detail(He said convincingly). It should give you bette rcapicty between visits to the loo, if nothing else.If you are out when they do it, cant feel a thing. I cant wait. Keep us posted.

Bas

[Andy J]

Basil did you have or waiting to have a mini Turps or a full re-bore?  Interesting to know the difference pre and post op and any side effects.  Currently having to get up once or twice per night after RT treatment in Feb 2020.

[Basil]

Andy, I should first point out that I have an enlarged prostrate not cancer, but should not think as far as a Turps is concerned they are any different. Its a full rebore, twice ,as its to big to do in one  go, due to the pressure on bladder during the procedure. I'am up maybe 6 times or more in the night, thats why I am looking forward to getting it done.

Bas

[cymaz]

Just booked a PSA test using this site. It’s a charity site...

 

https://www.mypsatests.org.uk/News/

[Martian]

Hope it's a good result 

[Martian]

April 2019 is so long ago when I was first diagnosed and have been monitored since then all has been OK until now last three PSA results show a rise and this last one a jump to 7.3 that's a 1.2 jump bit of a shock to say the least got to have another blood test end of March and if still raised or rising have a discussion on next steps maybe another biopsy or MRI or possible treatment anxious to say the least but at least monitoring works.