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Tell us about when you were diagnosed - diagnosis

User
Posted 11 Nov 2015 at 09:50

Hello everyone,

This is Amy and Ruth from the Health Information team.

We’re making a film for people who have just been diagnosed with prostate cancer, and their friends and family.

We know this is a really difficult time for people and there are lots of new things to learn, which can be frightening and overwhelming. We want to make a short animation to help explain what prostate cancer is, answer common questions and tell people where they can get support (for example, through this online community).

It would be really helpful if you could think back to when you or your loved one was diagnosed and share your thoughts on these questions:

 

Is there anything you found difficult to understand about your diagnosis and what to expect?

Is there anything you were told that you found particularly useful and that you think we should share with other people?

Is there anything you know now that you wish you had known then?

 

Please comment below or you can contact us directly if you’d prefer on 020 3310 7144 or amy.evans@prostatecanceruk.org.

Thanks for your help,

Amy and Ruth

Edited by member 11 Nov 2015 at 09:50  | Reason: Not specified

User
Posted 13 Nov 2015 at 22:52

Last year my husband was diagnosed with advanced, metastatic prostate cancer that would kill him within a few years. Treatment would help control symptoms and slow things down, but not cure the cancer.

Within a week of this news, we found ourselves in a consultation with a urologist who carried out a biopsy and started my husband on hormone treatment. He spoke almost entirely to my husband, while I sat in the corner, fighting back tears. We have been married for 45 years, and as he explained the effects of the treatment, I realised that my husband would never feel desire for me again during what remained of his life. I was devastated.

I don't think consultants and nurses always appreciate that the accompanying partner/carer may also be deeply affected by the disease and its treatment. Some do, but not all.

The other point I'd like to make is that although many prostate cancers are cureable or manageable in the long term, some are not. It is wearisome to hear people keep saying, "Oh, my uncle had that, he had it for 20 years and died of a heart attack." Even at the local prostate support group, there are men who seem not to understand that for some people it's not just a matter of being treated and then getting on with your life. You don't "battle" advanced cancer, it assaults and mugs you. It's not just a matter of having a positive attitude. Sometimes, prostate cancer is very aggressive and kills men, not necessarily very old men. It's important not to scare people, but the facts need to be understood.
Marje

User
Posted 11 Nov 2015 at 10:33

For me now , the hardest part is that once you are diagnosed with PCa it seems to take over your life forever. You are either still in the middle of treatment permanently or if you are lucky enough to have treatment that leaves you undetectable you are still worrying permanently about it returning , and chasing results and appointments still to reassure yourself. It seems for people particularly like myself that there is no " cure " ever.
My lifeline has been this site and the community. Very helpful kind people who can help you real-time , specialist nurses who are sensational , and all the publications and info one could ever need. I really feel a couple have to be armed with all the info to understand the complexity of the journey. My hospital advised me to use you and gave me a printed tool kit. I'm so grateful for all you do.
Thanks Chris

If life gives you lemons , then make lemonade

User
Posted 11 Nov 2015 at 17:52

Just like to say I think making a film of the basics and suggesting how men can proceed thereafter is an excellent idea. I don't think consultants have sufficient time to explain things and possibilities in great detail and often men are so in a shell shocked state that they are unable fully to take in what they told anyway. So a film that could be gone back to could be helpful for some men as a visual experience can have more impact than reading. As many have testified, they have been helped on their cancer journeys by joining a site such as this and I would hope that this would be clear from the film.

There have been a lot of advances in treatment and techniques since I was diagnosed in 2007 and men recently diagnosed should fare better as a result which should be encouraging though this is still a serious disease with potentially adverse side effects from treatments. Perhaps showing various treatments being given would be helpful.

At present men are often told to opt for one of the treatments their hospital can provide and the choice is limited. I would like men to be told that sometimes there is more choice for them as individuals if they seek out suitable options at other hospitals.

Barry
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User
Posted 11 Nov 2015 at 10:33

For me now , the hardest part is that once you are diagnosed with PCa it seems to take over your life forever. You are either still in the middle of treatment permanently or if you are lucky enough to have treatment that leaves you undetectable you are still worrying permanently about it returning , and chasing results and appointments still to reassure yourself. It seems for people particularly like myself that there is no " cure " ever.
My lifeline has been this site and the community. Very helpful kind people who can help you real-time , specialist nurses who are sensational , and all the publications and info one could ever need. I really feel a couple have to be armed with all the info to understand the complexity of the journey. My hospital advised me to use you and gave me a printed tool kit. I'm so grateful for all you do.
Thanks Chris

If life gives you lemons , then make lemonade

User
Posted 11 Nov 2015 at 17:52

Just like to say I think making a film of the basics and suggesting how men can proceed thereafter is an excellent idea. I don't think consultants have sufficient time to explain things and possibilities in great detail and often men are so in a shell shocked state that they are unable fully to take in what they told anyway. So a film that could be gone back to could be helpful for some men as a visual experience can have more impact than reading. As many have testified, they have been helped on their cancer journeys by joining a site such as this and I would hope that this would be clear from the film.

There have been a lot of advances in treatment and techniques since I was diagnosed in 2007 and men recently diagnosed should fare better as a result which should be encouraging though this is still a serious disease with potentially adverse side effects from treatments. Perhaps showing various treatments being given would be helpful.

At present men are often told to opt for one of the treatments their hospital can provide and the choice is limited. I would like men to be told that sometimes there is more choice for them as individuals if they seek out suitable options at other hospitals.

Barry
User
Posted 11 Nov 2015 at 18:49

I think the most confusing bit was being given a choice of treatments and the option of a trial at the same time, you sort of expect to be told what the treatment will be, not have to decide yourself.

The urologist wants you to go down the surgery road and the oncologist down the radiotherapy route.

It's a lot to take in.

The Gleason score should be clearer too. we were told it ranged from 0 to 10, so 7 panicked us, in real terms I think cancer is graded 6-10 so anything under 6 is not a concern, as such.

Getting the results piecemeal was also difficult, they seem to assume you are a low grade cancer, give you all those leaflets then each time you go back you get told more news and heR that there is more spread.

Things like bone scans were difficult, we were not told that as a pregnant woman that I should not accompany my oh. This left me at the hospital, miles from home, without transport not being able to go near my oh. I had to get a taxi home for 60 pounds. this was so upsetting.

I wish then that I had known about this site. Until you start using it you don't appreciate its worth.

User
Posted 12 Nov 2015 at 06:07

my diagnosis
It all started from a visit for my 60th well man clinic (shows how important these can be), I had recently moved to a different GPs surgery, my well man clinic came within a few weeks of moving and has I had not actual seen a GP the nurse had arranged for me to have a chat with one of the GPs after my results on of well man clinic.

upon seeing the GP he said nothing out of the ordinary on my well man test results but asked me to tell him about myself,
so I explained about my past issues of going to see my previous GP and my water works problems and that each time I had been sent for a blood test and that they would check for diabetes, each time came back as negative for diabetes, this was at a time when I was in my mid 40s.

the GP then requested I had another blood test but did not say why as far as I can recall, this was done and the day my blood test results where known I had a phone call to make an urgent appointment at GPs

my first comment to my wife was
' I do not like the sound of that'

so GP appointment made informed of my PSA result, which I didn't have a clue what the GP was talking about so he then explained, a man of man age 60 should have a PSA of 4 and mine was 20, he then asked if he could examine me, and afterwards said 'your prostate feels hard and lumpy I will need to make an appointment with a consultant to determine if you have PCa and any treatment'

now some points from all this
if you are having problems with reg loo visits do not be fobbed of with not being given or offered a PSA test, I did not have a clue on having one of these, either due to my ignorance or lack of promotion of this disease

also I feel even though the GP did their best to help me having someone with me when they gave me my initial result would have been helpful, it was a lonely place to be
so my tip would be if you are going to get your initial PSA results always have someone with you

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 12 Nov 2015 at 18:36

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

User
Posted 13 Nov 2015 at 22:52

Last year my husband was diagnosed with advanced, metastatic prostate cancer that would kill him within a few years. Treatment would help control symptoms and slow things down, but not cure the cancer.

Within a week of this news, we found ourselves in a consultation with a urologist who carried out a biopsy and started my husband on hormone treatment. He spoke almost entirely to my husband, while I sat in the corner, fighting back tears. We have been married for 45 years, and as he explained the effects of the treatment, I realised that my husband would never feel desire for me again during what remained of his life. I was devastated.

I don't think consultants and nurses always appreciate that the accompanying partner/carer may also be deeply affected by the disease and its treatment. Some do, but not all.

The other point I'd like to make is that although many prostate cancers are cureable or manageable in the long term, some are not. It is wearisome to hear people keep saying, "Oh, my uncle had that, he had it for 20 years and died of a heart attack." Even at the local prostate support group, there are men who seem not to understand that for some people it's not just a matter of being treated and then getting on with your life. You don't "battle" advanced cancer, it assaults and mugs you. It's not just a matter of having a positive attitude. Sometimes, prostate cancer is very aggressive and kills men, not necessarily very old men. It's important not to scare people, but the facts need to be understood.
Marje

User
Posted 13 Nov 2015 at 23:33
Marje

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

User
Posted 14 Nov 2015 at 08:34
My story is no doubt similar to others however the bit that still messes with my head most about the diagnosis is a throw away comment from my first urologist and 3 weeks later a very different conversation with the second.

My first urologist after seeing my PSA at 342 and having a feel said" I don't usually diagnose without results from scans, MRI etc but in your case the bad news is that you have prostAte cancer, the good news is that it is eminently curable". So my wife and I left in tears but personally I was not looking forward to some procedures however expected to be cured.

Roll on 3 weeks with results from scans etc, I sat in front of another urologist who matter of fact,y said I am T4 n1m1a, gleeson 9 and have 2 to 10 years to live but think 3-4. When my wife and I burst in to tears he was surprised we had not been told hence his matter of fact way.

So urologist 1 should not give false hope and urologist 2 should have known that I didn't know the scores on the doors.

I suspected that I had a serious situation when I was expecting a 12 or 18 needle biopsy but only had 6. When I asked the guy doing the procedure why he stopped at 6 he indicated from what he could see he couldn't miss the cancer, ie there was so much visible on his scope.

Finally, I don't understand why the PCUK toolkit isn't handed to every man as soon as they initially are diagnosed rather than leave to chance that they find their way to this site?

Kev

Dream like you have forever, live like you only have today Avatar is me racing in the Sahara April 2018

User
Posted 14 Nov 2015 at 11:27
Kev

If I didn't know you lived the other end of the Country I would have said you and Mick saw the same urologist first time around. He told Mick with a PSA of 545 and after doing a DRE almost word verbatim what yours said.

It was the false hope that Mick might be cureable and certainly treatable with many more years ahead of him, that became the hardest thing to deal with mentally and emotionally when the stark truth emerged a few weeks later. Gleason 10 T4 N1M1 and now a PSA of almost 3000

The only saving grace in Mick's journey was the Oncologist he was next referred to, he never assumed anything and when he told Mick that in his case his cancer was terminal he did so with genuine sadness and a lot of empathy. He did not give a prognosis. He also said he would leave us alone for a while so that we could just have a cuddle and try to think of any immediate questions.

When he left the room Mick looked me right in the eye and said " I do not want to know how long, I do not want to be forever looking at a clock on the wall and thinking time is running out"

I held him very tight and told him how much I loved him and that I would be there with him and for him every step of the way come what may.

His next words did not surprise me much at all he said I only have one immediate question for Mr B

"what's the plan?" right now everything else is just detail.

When Mr B came back a few minutes later Mick posed his one question, Mr B took him by the hand and thanked him and then told him his plan. That formed an immediate bond between patient and physician.

xx

Mo

User
Posted 15 Nov 2015 at 18:40

hi ,

Ive have recently been told in september that i have Prostate cancer with lymph node involvement ....

My quick story ...toilet trouble ,not being able to hold urine and being a cab driver was running in most London hotels to take a leak .G.P did a P.s.a test on my second visit ,came back 20 ...antibiotics for 2 weeks ,P.s.a. still high
....Went running to Harley Street for an ultra sound as convinced myself i had cancer ,not really understanding anything about p.s.a ....Was told by the lady who laughed when i asked ,Have i got cancer? NO YOU DO NOT HAVE CANCER and off i went to watch a musical with my girlfriend.

BUT she did say i wasn't emptying my bladder properly and that could be causing the high p.s.a.and said i should ask my g.p to refer me to an urologist.

Fast forward a few months ,maybe those months would have been the different between cure or treatable ,who knows !
and quite frankly it doesn't matter now i am not one to look at the "What ifs". My energy is better spent looking after myself now.

I was told before my biopsy ....that i had prostate cancer with lymph node involvement . The MRI has been enough it could be nothing else....after i came round from the drugs .and my girlfriend picked me up ..the curtain was pulled around us in the recovery room and shaking she asked the doctor : "how can you said that without the biopsy results: ?"
as we sat there with other patients in view and a fake smile saying its a lot to take in ....girlfriend in tears ,she is 37 years old and we had found out a few weeks before the only chance of a baby would be IVF .Our lives flashed before us .

One bit of luck it gave up some time 10 days to store my sperm before meeting the urologist .He annonuced the cancer was in the prostate Im saved !!!!
,we all looked amazed ,then he turned around in his chair and back at his computer and then told us it had spread ....I thought i know you are a busy man but f**k me this is my life .......maybe a quick glance at my notes before we all walked into your office would have done ..

So maybe the top boys at the hospitals need to know that we might just be pieces of paper to them but we have feelings .

To sum up so far i would like to say that if you have any problems in the toilet department seek help ,i never thought i would have cancer ,even sometimes now with hardly any hair on my head due to chemo i think maybe they have it all wrong

....

Whatever time or how they tell you ,does it really matter ...its the help you seek and find after diagnosis that counts ,


User
Posted 15 Nov 2015 at 20:43

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

User
Posted 20 Nov 2015 at 11:25

Hi everyone,

Thank you so much for being so open and sharing your experiences. It’s really useful to help us understand the experiences and thoughts you’ve had about diagnosis and will help us to reach more men and families.

As your contributions have been so useful, here are a couple of ways that you can share your experience more widely if you’d like.

We’d like to share some of your experiences in our information online and in our publications. This can help others understand the emotions, thoughts, and experiences they might have, as well as sharing tips. You may have seen these in our publications with personal experience quotes. For example, "There is nothing like talking to someone  who has been there.” – A personal experience. I’ll message some of you individually to see if you’re happy for some of the things you’ve shared to be used in this way.

The power of your stories could also inspire countless others to visit the doctor, seek support or just know there are others out there just like them. Because of this we’d love to share your stories and how prostate cancer impacted on you to more of our supporters and people needing help. If you’d be interested in speaking more about your story and being interviewed about what happened please contact editor@prostatecanceruk.org. We’d love to hear from you and make your voices heard.

We’ll post up again when we have an update on this project. And we’ll still check back here in the meantime so please do comment if you’ve got something to share.

Thanks again,

Amy and Ruth

User
Posted 22 Nov 2015 at 17:59

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

User
Posted 22 Nov 2015 at 18:17

That's a good point, Alan. There is very little guidance on what's the best treatment, or whether the benefits of a given treatment are likely to outweigh the side effects and inconvenience. We struggled with this (and are doing so again now, as the disease progresses relentlessly), and yet we are educated people capable of making some sense of clinical trial reports and medical jargon. Many people diagnosed with cancer are old, alone, or without internet access, and must find it even harder.

You can try saying to the consultant, "If this was you (or your husband or father), would you choose this treatment?" which sees to have worked with you and your GP, but may not always get a helpful response.

I think this is more true of prostate cancer than many other cancers. The picture is changing very rapidly, and the available treatments vary with time and location. We are impressed with the range of treatments available to Tony at every stage, but less so with the support offered to help him make a choice.

Marje

Edited by member 22 Nov 2015 at 18:18  | Reason: Not specified

User
Posted 23 Nov 2015 at 11:35
Marje, Alan and other readers

a few of us were talking about the choices on diagnosis issue just recently. I have seen so many men or their partners/wives posting on this forum who face this very daunting problem.

There are leaflets giving lots of information on the various stages of prostate cancer but I do not ever recall reading something that clearly highlights each treatment and within that the method of treatment, the potential side effects of said treaments and which ones can be used as salvage for a primary or secondary treatment etc. There is nothing I am aware of that clearly explians the potential benefits of each over the other or that gives any guidance on how a Man could or should go about choosing.

I have seen several men and women atempt to explain in their best possible way on here though. In fact it crops up so frequently it does raise a question for Amy or others at PCUK.

Please could such a guide be written and published?

xx

Mo

User
Posted 23 Nov 2015 at 15:09

Yes, Mo, it's an interesting proposition. The trouble with a leaflet would be that it would so soon get out of date. A website resource could be updated more easily, but even then, there are treatments that become available and are then snatched away again, or are available in one area but not another. I'm thinking of things such as:
Early, preemptive chemo with docetaxel
Radium 223
Enzalutamide
Abiraterone
Cabazitaxel
- any of which may, or may not, be offered to an advanced cancer patient at a given time and place. And the list would be much longer if we included all the alternatives available at earlier stages of PCa.

Local availabilty is another issue, and it can be hard to weigh up the costs and benefits of travelling to a hospital many miles away for regular treatments. A man who is fit to drive or has a wife who will help out is in a different position from a frail person on his own.

I suppose what many people would like would be a sympathetic nurse or doctor who would go through all the options actually available and make recommendations. The nearest thing most men have is an oncologist who will say, "Well, you can have this, do you want to try it?" I also have a general feeling that there is a tendency in medicine always to treat, and carry out scans and tests, rather than to take time discussing the test results and perhaps advise caution in choosing treatment, but maybe that's just how I see things.

Marje

User
Posted 23 Nov 2015 at 15:50

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

Barry
User
Posted 19 Dec 2015 at 21:22
Hi Amy,

One really useful thing I learned only on this forum was that once you have a cancer diagnosis, you can get free prescriptions. No one told us this.

My oh went to his GP for a hearing test. The GP picked up a psa of 6.3 on a well man check eight months earlier (!) and said he'd better have another...

Have you thought of doing a film for gps??

Edited by member 19 Dec 2015 at 21:26  | Reason: Not specified

User
Posted 20 Dec 2015 at 09:34

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

We can't control the winds - but we can adjust our sails
User
Posted 20 Dec 2015 at 12:25

I visited my GP to instigate an investigation into an ongoing knee problem.....

I was about to leave, and casually mentioned if there was such a thing as an 'MOT' for blokes like me who hardly ever visited him.

He arranged for numerous blood tests to be carried out, one of which was a PSA level check at my request..

The PSA reading came back as 9.86....the rest is recorded here on my profile.

Ironically, given my family history ( dad died of PCA at 55 years of age ) I had requested a PSA test two years earlier.

On that occasion he  talked me out of a test at that time.... Partly my fault as I should have insisted, but you assume that the GP knows best don't you?..... 
If I had the knowledge and info that I've accumulated since, I would have challenged him..... I've since changed my GP as I have no longer any confidence in him for a number of reasons...

So no thanks to him that my PCa was still contained when I was diagnosed.

Edited by member 20 Dec 2015 at 12:28  | Reason: Not specified

User
Posted 15 Jan 2016 at 14:15

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.

User
Posted 15 Jan 2016 at 17:24
My Oh saw a doctor about something else and mentioned increasing nocturnal visits, the doctor decided to do a PSA test. He was 61. We got a non urgent call to attend an appointment with no idea what it might be about. He went alone and was told his PSA was 25 but not to worry as it was probably BPH. An appointment with a urologist followed, by which time I had googled PSA 25 and had a pretty clear idea that it was cancer. Well what I actually found was if PSA was more than 10 there was a 50% chance of cancer.

The urologist did a DRE and immediately said that the prostate was hard, so we knew if was cancer. Then came the bone scan and MRIs and then another appointment where were were told that there were lesions in the bone and lymph and told to speak to the specialist nurse and to be positive. Th specialist nurse was on holiday so it was two weeks before we saw her and got the picture. g10 was the scariest bit.

Our first oncology appointment involved an ignorant pig who took two calls from his wife while telling us our full diagnosis. He gave us the two years prognosis. Luckily I found this site and what a help it has been. I've learnt so much that I simply had no idea about previously.

We have been extraordinarily lucky, 5 years on life is ok, no chemo yet or any other the new drugs. Some bad times yes, but lots of good ones too.

Devonmaid.

 
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