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Received diagnosis at 48 years old - Prostate cancer treatment, surgery or active surveillance,,

User
Posted 06 Jul 2014 at 23:18

Hi all,

Along with reading as many research papers etc on line as possible I have been viewing the posts on this site and decided although I have never previously joined an internet forum,  I would on this occasion get involved.

I am 48 and a few months ago went to my GP concerned with sudden erectile problems never previously experienced.  For a couple of months my wife and I had been associating this problem with work and life stress.  However, with additional urinary issues my GP suggested ruling out any prostate issues and order a PSA test (which I had never heard of).  A week later I received an evening phone call from my GP to advise PSA level was at 6 and because of associated urinary problems he was referring me for an urgent urology appointment.  This appointment included my first and I have to say rather painful DRE (negative result).  As this was painful the urologist suspected an infectiion and tested another urine sample. Unfortunately this was negative for infection so a biopsy was arranged.  I received the results of this on the 23rd June.  Although I was hopeful it would be a diagnosis of BPH, we were informed 2 of the 12 core samples were positive for cancer, Gleason score 6.  The doctor appeared confident the cancer is in the early starges.  He ordered an MRI to confirm staging.

I had my MRI only 10 days after the biopsy results and I am currently waiting for my next appointment in just over a weeks time to recieve the full diagnosis and suggested treatment plans.  At this point I have to say how impressed I have been with the NHS's timescales and general patient centered approach.  From some posts I have read I believe this can be hit and miss so I count myself lucky that the service in our area seems on the ball.   I have been searching the net for research papers regading the pros and cons of surgery over other treatments including active surviellance.  I suspect due to my age surgery may be the best option.  Although the side effects particularly the erecitile dysfunction greatly concerns me.  I am hoping the cancer has not spread and I indeed have this hard decision to make.

Although research articles can give a lot of statistical information to help make an informed choice regarding treatment I think reading first hand experiences like the ones on this forum are more helpful.

So I have to say at the moment I am counting down the days to my next appointment, trying to remain focused at work whilst also trying to remain positive that my cancer is in the early stages.

 

Any advice much appreciated.

 

Many thanks

 

Jamie

 

User
Posted 07 Jul 2014 at 07:17
Hi Jamie

Sorry you find yourself here particularly at such a 'young' age.

I was 54 when diagnosed so clearly not an old mans disease.

First thing I would say is download the Toolkit from the PCUK website, you can find it under publications. This gives you info on all the available treatments.

May also be worthwhile downloading the NICE guidelines for treatment of Prostate Cancer.

It certainly sounds like they've caught it early and that you are in the cureable camp. There is emphasis on active surveillance ie not having any treatment as the PCa may not go anywhere for many years.

Obviously there are a range of radical treatments available but careful consideration needs to be given to these as they do come with side effects. I have had it removed followed by radiotherapy, my side effect is ED although that is slowly improving.

Every man is different and there are approx 26 different variations of PCa so I would do your research and ask questions of your medical team. Also ask questions in here as I am sure you have picked up there are men at al different stages

One thing for sure, you are not alone

Bri

User
Posted 07 Jul 2014 at 07:33
Hello Jamie. I second Brians suggestion re the Toolkit.

My husband at 72 was on Active Surveillance for just over a year before he had to make a decision. It gave us breathing space to research thoroughly which route to go and he eventually chose Seed Brachytherapy which took place in June this year.

Providing you are not advised to rush into anything because of the severity of your situation it may be wise to take a big breath and a step back to assess exactly what's what. In other words - don't make any panic decisions.

As a wife myself, the only other advice I would offer is to involve your other half at every step of the way.

She too, is going through this journey with you.

We can't control the winds - but we can adjust our sails
User
Posted 07 Jul 2014 at 08:04
Hi Jamie

Sorry you're in the club, but finding it early is the key. Unfortunately, it's only removal that will inform you whether you have a pussy cat or a tiger. All treatments have side effects. Read Kennt's thread re Brachytherapy - very informative.

At 61, I went for Robotic RP. It seemed the surest way to me of getting rid of the cancer early. Continence is now improving, but no sign of life down under as we approach 13 weeks post op.

In the end it's your decision, it sounds like you have a bit of time, so garner as much info as you can.

And remember, to put it bluntly - you can't have an erection when you're dead. The thought of 20 years more life (40 or more for you!) rather than 4 or 5 is a good trade off n matter which treatment you choose.

Paul

Stay Calm And Carry On.
User
Posted 07 Jul 2014 at 08:51

Hi Jamie,

Welcome to our group but as others have said sorry that you find yourself here. Bri has given you some brilliant advice definatly get the tool kit.

Your age is a reminder that this is not an old mans disease and we need much more awareness out there for everyone.

This is one of the worst times waiting for those first sets of results, it does sound as if you are in the cure camp I would urge as the others have said take your time to make the right decision for you.

Take someone with you to your next appointment, it is amazing how blank your mind and hearing can go at stressful times. Many on here take a list of questions to ask .

As Bri has said you are not alone.

Keep posting and let us all know how you get on.

BFN

Julie X 

NEVER LAUGH AT A LIVE DRAGON
User
Posted 07 Jul 2014 at 10:52
Hi Jamie,

Early diagnosis is key to success.

The side effects that you read about are all potential, including life.

You may suffer ED, you may suffer some incontinence,you may not and if you do, you may make a quick recovery, or it may take some time.

This is possibly the most difficult time in the process, deciding what to do, as there are no guarantees and no two men are the same despite the similarities in the plumbing.

Whatever you decide to do good luck.

dave

User
Posted 07 Jul 2014 at 10:53

Hi Jamie,

 

As others have said the important thing is that it seems to have been found in it's early stages and so is curable in many different ways. Your most difficult task is deciding which method of treatment is right for you. You are the only one who can decide this. Each method may be successful in it's own way but each also has side effects that you must understand and be comfortable with. So, lots of reading, lots of questions to ask, people to see etc. and then come to a decision you are both happy with and go with it whole heartedly.

 

I decided on RRP and am very happy that I did but that of course was my decision. Good luck with whatever you decide. You will receive support and good advice here as we have all gone through what you are facing right now,

 

Steve 

User
Posted 07 Jul 2014 at 19:33
Hi Jamie,

Sorry you find yourself here. I too am one of the 'young ones' diagnosed a month ago. Gleason Grade 6. Like you, I followed the NHS route, they were fantastic. After a 3 month wait in between PSA tests, things moved very quickly & efficiently.

I visited the surgeon & radiographer to discuss options & have chosen the surgery route. I'm in for a pre op on the 24th of this month, then I've arranged for the LRP on the 15th August through BUPA when I come back from Holiday.

I'm aware of the possible side affects but ready to take the challenge and get on with it. I feel so lucky to have the opportunity of a possible cure & live a full life in whatever form that is.

The ED side of things was my biggest worry (at 44) but once I'd thought it through for a few hours, I kicked myself up the bum & made the decision.

I'm a bit nervous about the op as I've never been in hospital or under anaesthetic before so don't know what to expect but I'm going to enjoy my hols, run a last marathon in Bath at the end of the month & bite the bullet.

I hope to be back running marathons in October or November & spreading the word amongst my mates and everyone I bump into about the importance of getting tested if they show any symptoms. I have them all, back pain, agony passing water, up maybe 6 or 7 times for a wee at night & a sit down dribble of a pee that's pathetic. I crave a good sleep but can't rest for long enough. I no sooner get in bed, than I'm up again. I often fall sleep on the loo, still dribbling.

I've been going to the docs with these symptoms for a long time & was fed up with courses of antibiotics for a 'water infection'. Had I known what a PSA test was, I'd have been more persistent. In the end, I just lived with it until I had a random PSA test as part of my diabetes care. The nurse may well have saved my life.

Good luck mate, whichever route you take.

Carlos

.

Life's a Marathon. Run in peace.

User
Posted 07 Jul 2014 at 20:23

Hello Jamie,

 

With only two cores positive it sounds like you have been caught early & also have time to research carefully.

At a younger age, it's important to knock this problem out for good and often an aggressive approach with treatments achieves this best.

 

Regarding ED. An experienced surgeon who has done many ops should be able to discuss nerve-sparing with you. Which sounds most likely given your early diagnosis.

 

One other point. If there is any family history of P.Ca. or B.Ca in relatives then that is a potential added reason for earlier treatment.

Remember, one side effect of  treatment is likely cure. That's worth balancing with other potential effects.

 

User
Posted 07 Jul 2014 at 22:07

Hi Carlos,

Thanks for you reply. Sorry you also find yourself on this site particularly at such a young age.

Like you, I consider myself to be lucky that it appears I have been diagnosed early.  However, I think I am still in shock from the orginal diagnoses and like people have said on here, the waiting is perhaps one of the worst parts.  Thankfully I have my next appointment Tue 15th July, so only a week to go and I should know the staging.  Hopefully I will be given news that will allow me time to think about treatment options etc.

Did your consultant recommend surgery over other options?  I have done a reasonable degree of research into the different treatments.  I can't help thinking that the only way to be sure is to opt for surgery (assuming I am told it is confined to the prostate).  I lost my maternal grandfather last year at age 93, kind of want to at least match his achievement.  I have little knowlege regarding my fathers side of the family so can not be sure if there is any history of agressive PC.  Like you I am worried about the possible side affects including ED but then this is a small price to pay for a cure.

I like your positivity and planning.  Hope you do well in the marathon and enjoy your holiday.  I have a holiday booked in late September and all being well I am planning to start any treatment after this.

Good luck to you! 

Jamie

 

 

User
Posted 07 Jul 2014 at 22:14
Hi all,

Thanks for all your replies, positive messages and advice.

Bri - I will check out the toolkit and will start preparing my list of quesitons for my consultants appointment on Tue 15th. I will also have a look at the NICE guidelines.

My wife will be coming with me, so if I go completly blank she will hopefully be able to retain the information for me.

As many of you have said the waiting is one of the worst parts.

Thanks

Jamie

 
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