Tell us about when you were diagnosed - diagnosis

My initial visit to my doctor was because of frequent weeing at night, he put me on Tamsulosin for three months then when I needed more tablets he gave me some different ones as well and said that he wanted me to have a blood test "just to rule things out". When I enquirerd about the results I was told that an appointment was being made to see a urologist (still no mention of the C word) I was then informed that a bone scan and a MRI scan was needed. All of these were done and an appointment was made to see urologist for results( my mind was ticking away with the thought of cancer but I did no research before seeing urologist) it was only at this appointment that I was told about my PSA level being 63 and that I had PCa.

I was told the treatment would start straight away with HT for 2 years and RT in 3 months.

Not much information was given although if I had asked any in depth questions they would have been answered, I left feeling shocked but not surprised.

Several people in the medical profession have said to me that if you are going to get cancer then Prostate is the best one to get (whoopy doo, must be my lucky day!)

Unfortunately there is not much publicity about the diagnosis procedure for PCa and most men, myself included, are blissfully ignorant regarding the facts etc. I did not even know what PSA was, or that a DRE could indicate the need for further examinations. I have since got up to speed and try to promote the need for check ups as often as possible for men over 40 as well as the obvious candidates in their 60's.

Throughout all the tests and procedures I have had to chase and pin down appointment times rather than waiting and hoping for NHS letters. I have also had someone else with me for every appointment as I have a shocking memory.

Cheers, Chris/Woody

Life seems different upside down, take another viewpoint

i so feel for you 45 years and then booomph your whole world changes.

I am sure Amy and the team at PCUK will be keen to hear all the recounts from those Men in the front line so to speak, right through to partners, families and friends.

By E mailing your story to Amy or posting it on here it matters not, your experience will contribute significantly

xx

Mo

Hi my journey began when my my oh booked me a psa blood test , i had no going to toilet ect so thought nothing of test ,got call from gp to come back in said psa 5.7 should be below 4 did finger test could feel no lumps but would refer me to consultant who did test again and said he could not feeling anything abnormal but what did i feel about a biopsy ,which i said that it would rule it in or out said results would be back in 3 weeks ,was away when oh called me to say consultant wanted to see me and had booked me a date, i thought ominous as it was only 7 days since biopsy and had said to bring someone along with me ,sat me down and said test results showed i did have PC and that he wanted to tell me himself it was gleason 7 and he had booked a MRI scan to get a clearer picture,then i was on the escalator which seems to never end . Andy

Hi all

I went to see my GP with a totally unrelated problem. Just as I was about to leave I mentioned that a couple of years prior I had a biopsy because of a borderline PSA result. Nothing was found but the urologist recommended I have another PSA test in a couple of years when I turned 60. On checking my records my GP informed me that that was over 4 years earlier so arranged for a blood test. I was not in any way concerned as I had no symptoms at all. My GP rang me about a week later, informed me that my PSA was slightly high at 5.2, but not to be too alarmed as this could be down to a number of reasons. He told me he had sent a referral to see a urologist. Appointment around 4 weeks later, usual finger test and told that he could feel a slightly firm area on my prostate, but again, not to be too concerned as there could be any number of reasons. But he arranged a biopsy just to rule out PC. The nurse asked me afterwards did I want to arrange an appointment to see the urologist for the result or did I want her to phone me. Not being in the slightest bit worried I told her to ring me. I was convinced the result would be the same as the one a few years earlier. I was wrong. She rang me a week later and informed me that out of 10 samples, cancer had been found in one. She had made me an appointment to see the consultant later that week. He arranged a MRI & bone scan. Once those results were in I was told the outcome was Gleason 5.4, T2, 3+4, localised and curable with either RT or RP. Another appointment was made to discus RT with the specialist from nearby Sheffield. She explained the options but added another one, Brachytherapy, gave me a load of info pamphlets to read and phone numbers to ring to discuss if I felt the need. My head was now in a spin, as was my wife's who has been so supportive, and still is. Anyway, saw surgeon who would perform the op with Da Vinci, he painted a very rosy picture and pointed out that if I had removal and the cancer returned I could then have RT, but if I had Brachy or RT and it returned surgery was unlikely. So I left his office convinced surgery was the right treatment for me. I then had an appointment in Leeds to discuss Brachytherapy. The doctor was very reassuring, and convincing, in the success rate of the treatment. 

Now came the hardest part, deciding which way to go. Took me around 3 months of agonising, talking to different people who had had the different  treatments, that just seemed to make it harder. No-one can decide for you, it is 100% up to you which treatment to have, which I think, considering the stress you are already under having being told you have cancer, puts so much pressure on the individual it seems totally unfair. What you need is advice and someone to say " In my opinion the best course of treatment for you is..............", but they don't. In the end I went to talk to my GP who said he could not tell me which was the best treatment, but if I was his Dad he would suggest Brachytherapy. That was good enough for me and in January this year I had the implants, and so far so good. 

Have I made the correct choice? Who know's, only time will tell. But I do think there should be more help & advice in making the correct decision

Alan

I agree with Mo on highlighting the pros and cons of various treatments and not just listing surgery and RT with variations. (This would of course require updating as new methods evolve and current methods are refined so literature rather than a film might be a more suitable medium for detailed information and updating). But it would have to be made clear that whatever a patient made of this information, depending on his individual PCa situation, general health and other factors, what might appear to be best might not necessarily be so for him. Armed with basic treatment information, the patient is able to discuss options with his consultant. He can then more readily grasp what he is being told and the time a consultant spends is used to better advantage. I feel a patient should not be influenced by the uninformed. Several times unqualified people said to me when I was contemplating treatment words to the effect of "why don't you have such and such treatment, my father, brother, friend or friend of a friend or somebody I have heard about had this and it has worked well?"

Edited by member 23 Nov 2015 at 15:51  | Reason: Not specified

John had no symptoms at all and was at the doctors because he hurt his back.
Because he was turned 70 the GP added the PSA to a blood test form he had already given him because of the back.

He actually called him back from the door and added it as an afterthought.

If he hadn't John wouldn't have had a clue until such time as it made its presence felt and by then the treatment (Brachytherapy) he went for may not have been available to him.

I can't thank the doctor enough

Don't know if you are still collecting data guys and I have put up a post about my diagnosis in the "welcome" section but here are some thoughts.

I was asymptomatic. I never had to get up at night (unless I had been to the pub lol!), reasonable flow and apart from some frequency early in the morning (say from 9 am to about 11 am when I might go 3 times) nothing had really changed over the years or not significantly so. My impetus to get myself checked out was family history. Dad died of Pca in 1971 at 57. I had a PSA test in 2011 (it was normal but, foolishly, I didn't ask for my actual score). In 2013 my older brother was diagnosed with Pca having had difficulties with really weak stream. He put off going because he basically didn't want to know but my sister in law prevailed in the end. His PSA was 14 and his Gleason score was 9.

Given that family history I regarded it as a racing certainty that I would get Pca or even already have it. My family history meant there was a one in two chance. I admit I did put off getting a second test done. I had always wanted to go on a cruise (which we did in September last year) and I didn't want anything as inconvenient as Pca getting in the way. It was a frivolous attitude but because I was convinced I was going to get the disease I didn't really care that much.

So I went for a PSA test in late October. The surgery rang me within 3 days I think asking me to come in. My GP said my PSA was 7.2 and, in view of that he would refer me to a urologist. The rest, as they say, is history. I was diagnosed last month with a Gleason score of 7 (4+3) and stage T2b.

Now they say a cancer diagnosis comes as a shock. In my case it didn't come as a shock. I was certain in my own mind that I would get this disease. It did come as a blow however and there is a subtle difference here.

Another thing was my life long fear of cancer. Like many, despite expecting to get it, I have been terrified of Cancer all my adult life. My Dad had a terrible time in the months before he died. I also saw my sister-in-law die at age 39 of breast cancer and her physical and mental suffering was awful, truly awful as she left 2 young sons behind.

Now I have a variant of the disease and I can't explain this but I do not feel any fear of the disease. Obviously treatment has come on in leaps and bounds so that is a factor. I am 67 so have had the greater part of my life - that's another factor. I have been diagnosed at an early stage - yet another factor as is the fact that my older brother has been through the thing and come out the other side in good shape.

My fear is all around the treatment. I ruled out surgery because I didn't think I could face the unacceptably high risk of urinary incontinence but I am hearing horror stories about radiotherapy and fecal incontinence and/or rectal urgency.

As regards the effect on my wife and my children (both adults 35 and 37 respectively) they have been greatly encouraged by the favourable stats for getting a grip of this disease at the stage I am at and, more recently, by the very recent news that my brother was told by his oncologist after his latest PSA test that he was "90% certain the disease has gone."

But, for me, the fear of side effects dominate my thinking. I am not afraid of the disease or death but I might struggle to cope with fecal incontinence.