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User

Posted 24 Sep 2016 at 21:08

Hi All,

I find the Whole Issue very confusing, although yesterday's visit to hospital, may well have put my mind to rest.

I am 63 years old, and have had an enlarged prostate for some 18 years, getting up 2-3 times most nights to use the toilet, I was prescribed Alfuzosin or flomax which I took once a day, then eight years on, I was still having problems with flow-rate so I was then put on Finasteride which I take both to the current day, I was sent by my GP to the Urology Suite where I was examined, I April 2016, 3 days later I had 11 biopsies of which 2 were cancerous, my PSA at this stage was 3.6 but doubled because I was taking Finasteride, to 7.2 my Gleason score was 3+4=7.

Yesterday I saw the consultant and my PSA had risen to 5.1 x 2= 10.2 so he is now suggesting that I consider having the prostate out as an earlier MRI did not show any spread.

I too find the PSA readings to be a bit misleading, but what I have learnt from yesterday's meeting is that if the PSA is higher it is more than likely that it may have spread elsewhere, so what I'm being led to belief, that in my case, my cancer is contained in the prostate and once removed, Should be the end of it, but it still leaves me with the problem of erectile problems, which I hope I can overcome.

Consultant has suggested that I have another PSA check in 4 months to see if it has increased, and if it has, it will be a no brainer.

I would be interested to here from men that have had their prostrate removed and what problems they have had, if any.

Graham

User

Posted 24 Sep 2016 at 23:49

Hi Graham

Have you looked at the information on the site. RP . Ie an op is not the only option.

Also PSA. pre treatment is a very poor indicator. See my profile for more info. I'm fine and would not have wanted to wait 4 months with Gleason 7.

Gleason 6 or less would be deemed low risk. Early diagnosis is key. Ie you have I assume have had at least 1 biopsy. . Or have you had more. re. ED . see posts on forum. All effects people differently and numerous solutions. Have you not discussed RT , brachy or other solutions with consultant. . You are young and fit from your post so nothing should be 'off the table' .

Some people prefer to do nothing. I was is a similar position. . like thousands of others. No telling the speed and agressiveness of the mutant cells. As one consultate said to me , the initial rogue cell division could have occurred over 10 years ago, at best a guesstimate. Hope this helps. No rush however good you have posted on here and I'm sure others will reply. Gather information as much as you can absorb !

http://prostatecanceruk.org/prostate-information/our-publications/publications/tool-kit

Tool kit is available.

I realise looking back over the last 2 years how little I understood. It is a very complex 'beast' and presents itself in differing ways. Ie I had zero symptoms. The 'beast' could be a gentle moggy or a crazed tiger and everything in between.

Best wishes

Rob

Edited by member 25 Sep 2016 at 00:08 | Reason: Not specified

User

Posted 25 Sep 2016 at 07:10

Hello Graham and welcome.

Rob gives excellent advice on obtaining the Toolkit from publications, or if you want to discuss things in detail with a member of the medical profession you could always ring one of the specialist nurses on 0800 074 8383 during their working times and they may be able to help you.

Out of the 11 biopsies taken were the two cancerous ones on the same side?.

The sharp raise in PSA to 10.2 could possibly be explained by having had the Biopsy, or even intercourse before PSA blood is taken can raise it.

How soon after the biopsy was the PSA test taken?

If the cancer is contained I would have thought there were other options available to you treatment wise, but perhaps you prefer the idea of getting rid of the cancer - job done and dusted?

I'm sure others will be along, and I'll let the men comment on the possibility of ED. All I will say about that is that there is a lot of practical information on here, designed to help if ED happens.

Best Wishes

Sandra

*******

Edited by member 25 Sep 2016 at 07:11 | Reason: Not specified

We can't control the winds - but we can adjust our sails

User

Posted 25 Sep 2016 at 08:41

Hi Graham,

The most important thing to realise is that you have plenty of time to read and research as much as you would like before you make a decision.

I have been talking to men on this site and at my local support group for the last 9 years.

Lots of them have had RP, their cancers appeared to have been cured, and they went away happy men.

Others have had RP, only to discover that the PCa has hung on in the margins of what's left after PCa, it's come back and spread etc.

Others have made an instant decision to have RP, and then after they have been left incontinent and impotent, have researched the matter and concluded that they may have lived as long, and would certainly have lived happier, if they had not opted for RP.

Yes it's confusing, but if you read enough it should become clearer.

AND things are changing, if you look on this website's front page under latest news you will see 'Long-term study shows active surveillance offers same 10-year survival rate as radiotherapy or surgery'.

So it might be that AS is a better bet for you than RP?

Certainly AS will not effect your ability to enjoy erections, whereas you can almost guarantee radical treatment will make sex a distant memory.

One thing you can do, that carries no negative health risk whatsoever is change your diet, avoid dairy, drink green tea, eat lots of turmeric etc might be just as effective as RP or RT. Some dismiss diet changes as a fad, but many doctors swear by them. I took note and changed my diet 9 years ago, I had a PSA of 30 now its down to 0.2.

So as its September, imagine you are going to University, between now and Christmas you have time to read more than the average university student, and it is worth putting the time in, because all of that extra reading may very well save your life.

Dave

User

Posted 25 Sep 2016 at 10:10

Hi,

You need to do your research as ultimately the decision of which way to go, if any,will be your decision alone. You will be guided by health professionals so listen to there advice and have your questions ready.

In answer to your question I had my prostate removed 18 months ago ( see my profile). I am fine. I am fully continent. I have ED but haven't really done anything to assist with this. My libido was never that great and my good lady would rather have a nice curry so it was never really a problem.

I feel positive about the future. Seeing my Dad die after his prostate cancer wasn't detected until it was in his bonds and lungs and watching him have a really undignified death did influence my decision.

Hope this helps.

Paul

Edited by member 02 Oct 2016 at 16:27 | Reason: Not specified

THE CHILD HAS GROWN, THE DREAM HAS GONE

User

Posted 02 Oct 2016 at 15:13

Small rises in PSA tests can be caused by having intercourse in the 48 hour period before the test or doing a heavy workout so resist from both of these in the 48 hourse before taking a PSA test. Your Doc should tell you this. Read all you can on the subject and the various treatment options in the last few months and make sure to have your PSA tests - don't need to tell you this.

Take care

User

Posted 02 Oct 2016 at 15:14

Sorry that should have send next few months. You have time to make an informed decision.

User

Posted 02 Oct 2016 at 17:44

Hi Des,

I had sex two hours before my first ever PSA blood test. No one ever told me that I should avoid that...along with cycling.

I didn't find out about the 48 hr. avoidance rule until much later, when because of HT, I'd forgotten about that particular pleasure in life.

I've always wondered if that was the reason for my high PSA result in that first test!

Steve

User

Posted 02 Oct 2016 at 18:09

I really don't know how much that would have raised your PSA. I have to say I didn't get told this until after a couple of tests too but i have been trying to get PSA tests at least once a year since about 2000 as I had an enlarged prostate way back in around 1994 and have always tried to keep a watchul eye. Infact the first PSA test I had my parents were visiting and we were all watching Morning TV and the PSA test was mentioned then - I was going to see the urologist about my overactive bladder and enlarged prostate that day and asked then but even then they were reulctant to give me the test. I only had a prostate exam a few years prior to that because my brother has health insurance with his job and so has a medical every year and once he was over 40 or 45 they always did a DRE and later a PSA test. I explained to my GP that I was having problems urinating and was diagnosed with an enlarged benign prostate eventually having a TURP in 2004. Everyone seems to want to keep all these things secret don't they?

User

Posted 02 Oct 2016 at 19:06

I have never been asked if I had ejaculated or ridden a bicycle prior to having a PSA test. When I mentioned it to some phlebotomist they had never heard about abstaining before the test.

Thanks Chris

User

Posted 02 Oct 2016 at 20:19

The increase after ejaculation is tiny so wouldn't make much difference in normal circumstances, it matters more when you are being monitored after treatment and small rises can cause undue panic. Cycling can massage the prostate so the potential rise would be similar to taking a PSA test straight after DRE ... some uros think it makes no significant difference while others would never do it!

For a man whose pSA is being monitored as part of AS or after radical treatment, it is more important perhaps to try to keep the same-ish routine before each test. If you cycle, cycle - if you are lucky enough to have sex then so be it - and if there is a small rise (in the decimal places, not whole points) then remember not to worry too much.

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

User

Posted 02 Oct 2016 at 23:16

A UTI can cause a significant increase in PSA but this is easily checked by a urine sample being analysed.

Barry

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