Les - just for info - did you manage to call and, if you did, how did you ge on ?
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Hi Simon, I contacted Rouen,Caen , Countances and Nantes concerning the availability of IRM multiparametricque ( IRMmp). I’m still awaiting for their response! I also returned to see my consultant in Caen who confirmed that it is quite normal ( in France) to carry out a second biopsy without a scan. From my research that is not in line with best practice elsewhere. If I had followed consutant guidance in France last year my prostrate would have been taken out completly. That was based on a single PSA test and a low GLeason score of 3+3. What I have learnt over the last year is that it is extremely important to take informed decisions and not follow what the last health profession says. With IRMmp it helps to decide if a second biospy is required and if required it will be a targetted biopsy. There is much written about overdiagnosis in France . Its worrying. I am currently in the UK. From my research I feel the UK has been at the forefront of prostrate cancer deveoplments and in particular in the use of parametric scans. Ihave set up an appointment with a leading Urolgist in the UK to seek a second opinion. I will share the advice I receive here. Thanks again Simon for the previous information.
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Thanks for sharing your progress Les - it’ll be useful for others to hear about your responses and any advice received.
You, as must we all, do what you feel is best for you. Based on my own experience in France, the testing, scanning and treatment I have received has been exemplary. I have no experience of prostate cancer treatment in the UK but suffice is to say, had I been living there, the diagnosis would have been too late in my case. I’d also suggest that over diagnosis is better than no diagnosis - i.e. a positive thing in my opinion!
I’ve always approached matters from the basis that it’s my life - not that of my MT or my consultants and surgeons. They have guided and cared for me but ultimately it’s me that’s made all the crucial decisions.
Best of luck with your treatment path and keep in touch!
I currently have three family members in the UK going through prostate cancer and their experiences regarding NHS treatment are all different. FIL at 72 has had raised PSA levels for several years, he had a painful biopsy 18 months ago which was negative and is effectively ‘on watch’ although his consultant can’t seem to make his mind up about another biopsy, having said that I doubt they’d operate now given his age.
My uncle (aged 82) was diagnosed in his mid 70’s and has been ‘on watch’ ever since, last November the cancer had spread to his bones so he’s now having aggressive treatment which is sadly only really buying time, the care he’s receiving has been amazing though which has been a huge comfort.
The worst experience has been OH’s uncle who didn’t get diagnosed until it was too late, he’d been complaining to his GP of various pains for months but was sent away with strong pain relief and had never had a PSA test, his body is riddled with cancer and his life is over at 67.
Two friends here had PC and both had successful surgery with excellent follow-up care, I do get the impression that surgery is the default option in France rather than monitoring first though.
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Thanks for the info Tim. Based on your family experiences I think it’s important to stress again that age plays a huge part in the decision making process. I was 53 when diagnosed so was not keen to get into a Russian Roulette scenario. That said, again in my experience, surgery was most definitely NOT the default option.
As I’ve said before - I’m lucky to live just down the road from Oncopole / Cancerpole in Toulouse - a European centre of excellence for cancer research and treatment.
I don’t think it’s useful to anyone to make this a France v UK debate - all the info is out there and we make our decisions based on it and the trust we place in our professionals.
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But, if he is otherwise fit and does not have severe urinary symptoms then radiotherapy - which has about the same rate of cure - could be considered.
He is very fit for his age and still plays squash three times a week, his main symptom is the constant need to urinate.
Radiotherapy might not be best then - tends to worsen bladder symptoms in the short term.
I wonder if the fact that he is so very fit… could be used as an arguement in his favour… can’t they forget his age… and go with his “fitness age”… which would make him younger and young enough to make investigation/operation (whatever) very much more worth consideration… ??? 
I feel for all those who are suffering and/or have suffered… whether personally or for their friends and family… sincere hugs all round.
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Sadly the UK is not always brilliant although it starts out that way. We had a lovely friend diagnosed with prostate cancer in his early 50’s after a bad back and some bladder issues. He had some treatment that left bad radio therapy scarring but after 12 months his PSA levels were well down and he had 6 monthly injections for the next 18years with annual tests. In 2015 (after spending various periods touring in his camper van with his wife all over Western Europe having his injections wherever they stayed if it was time. In October 2015 he went for his annual check up, feeling fine, but his PSA level was raised. Specialist told him to make an appointment in 6 m for another check. By Christmas he had pneumonia and spent 3 weeks in hospital after an emergency admission. Antibiotics had worked but he had pains in his legs and the chest infection returned. The remainder of his life was awful, but he never saw his consultant for the PC till the month before he died, he was too weak for any treatment after the first hospital admission, but he and his wife trusted the NHS which ended up failing them badly. After 18 years of really low PSA we would have expected alarms to be raised, or communications between the departments to have had linked up thinking. He died on 24th June 2016. Be aware and follow your instincts.
Hi Colin and thanks for your input to the discussion - sorry to hear about your friend - can’t have been easy for him or those close to him.
Would you mind just answering a couple of my queries:
Firstly - was this hormone therapy treatment?
And secondly - did your friend die from prostate cancer?
Thanks Colin.
Yes it was hormone treatment.
His widow said it said prostate cancer and cancer of the bones. He couldn’t stand his legs were so weak for the last two months.
This was in the UK by the way, it was just so awful after experiencing all the good care for eighteen years. Sadly his widow has written a letter but not sent it, it made her feel better and because they were such a quiet undemanding
couple and never pushed for answers or pushed to see the consultant.
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Colin thanks very much for clarifying - much appreciated and once again - I’m sorry for your loss. Take care / Simon.
Hi Colin. Sorry to hear about the circumstances concerning your friend and his wife . Very sad. But as Simon said thank you for sharing as it reveals the importance of perseverance and getting second opinions if you are not sure. Over the last year since my diagnosis I have been reassured hearing about the numerous treatments now available for pc. I am also conscious that everyone has to take responsibility for their own treatment with many different decisions to take. In my case at the moment to decide whether or not to have a second biopsy. This will be influenced by the consultant that I am seeing next Tuesday. I will report back to this forum. Its so encouraging to see men talking openly about this condition and sharing personal experiences. It is very empowering and without question will support more developments.
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Very sorry to hear your story and for the loss of a close friend.
I assume from the initial symptoms including back pain and lifelong “hormone” treatment that his cancer had already spread when he was diagnosed.
In which case surviving 18 years afterwards is incredible, especially if no other treatment was given - the average is still something less than five years.
It very much depends on the individual patient - there is no such thing as a “normal” PSA post-treatment and not every rise in PSA needs action. Usually if there are no new symptoms then the triggers to change treatment are either that the PSA is more than 10-15μg/l or the time between successive doubling in PSA is shorter than three months but depending on circumstances a PSA of 0.2μg/l could be cause for concern and a PSA of 50 might be quite acceptable.
The trick is often to know when to change treatment was well as what to change to - in 2015 the options were quite limited. Abiraterone and Enzalutamide were yet to be approved by NICE so that leaves “Maximum Androgen Blockade” (addition of an anti-androgen such as Bicalutamide to the regular injections) or chemotherapy. MAB works well in some patients but in most only buys a couple of months which leaves chemo. As this is quite aggressive every month that it can reasonably be postponed is another month with decent quality of life - and, in fact, can be a month added to life after chemo as well.
Sadly the nature of cancer is such that sometimes people deteriorate very quickly and it becomes impossible to administer the “next line” of treatment because they are not well enough and it sounds like this might have been the case for your friend.
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Thank you for such enlightening replies, it has made me much better informed. We very much felt that he should have been checked much more quickly and that after his first admission to hospital for the chest inflection/pneumonia. That was less than 2 months
after his annual check-up. I think my friend and his wife were not strong enough to ask the necessary questions, it does sound doubtful that the outcome would have been different, maybe palliative treatment could have started earlier or they could have been
more informed of what was happening. They never seemed to be able to get to speak to any of the physicians treating him. As I say his widow has written in a letter her questions and thoughts in an effort to help her grieve, she is not looking to stir things
up so will not be sending it.
Perhaps she should send it - sitting down with a sympathetic individual (not necessarily medical, but who knows their way around medical notes) would perhaps help to answer those questions and provide some closure.
It does sound as though communication could have been better - I guess the single biggest failing of healthcare professionals is communication - or lack thereof.
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Hi All. Just back from the UK after seeking another opinion on whether I should have a second biopsy or not. I promised to share the outcome. At age 65, with a gleason score of 6, PSA of 6, clear scan one year ago, and clear physical examination, the consultant I met would not have recommended the complete removal of the prostrate. That was the suggestion put to me here in France 12 months ago. At that time I sought a second opinion and moved onto an active surveillance programme that involved 3 monthly PSA test and an annual biopsy ( without a further scan) scheduled for this September. I am very unsure about having that biopsy. The first one was truly unpleasant.
The urologist consultant in the UK felt that the correct course of action was to have a multiparametric mri first and then decide if a biopsy was needed. If this latest type of mri showed nothing then he would not recommend a biopsy . If something was identified the clear advantage of having this type of scan is that it would allow a targeted biopsy. He pointed out a biopsy without any information could easily miss suspect areas. As I have been unable to access this mpmri ( or IRM parametrique) in France I will be going back to the Uk in two weeks for the scan and will report back further to all. Please do not take this as a note that is trying to compare the UK to France. My point is that you find whatever information you can wherever it might be if you feel it is going to help. The UK consultant , for example , was full of praise of the pc treatment arrangements in Paris. But he did point out that, as with the UK, there will be regional differences , disparity in funding and real challenges in ensuring skill levels are maintained as a staggering number of developments in pc treatments continue to become available. He stated that things were changing quickly in how patients with just an elevated PSA might be treated in the first instance. The first respond in the future, he believed, would be a MpMRI. If that proved to be negative no further treatment would be offered other than further PSA tests to see if there was any escalation. To me that seemed great news and quite revolutionary: no biopsy, no surgery, radiotherapy or similar. He stated that over diagnosis was a main discussion area amongst his fellow professions at the moment . However , he added that for some patients the thought of having any disease however small and however slow growing would to difficult to live with. Therefore patients wishes must always be taken into account.
Below are three very personal summary points purely based on my experiences . I am not preaching to others! They may be useful for others to compare how they have or propose to approach their treatment:
1.Make sure that you understand every word that a medical profession tells you and that they have understand you. Always consider taking someone with you, ask then to write down the salient points or record.
2. Try to be as informed as you possibly can to help you make informed decisions about your treatment. Second opinions can be invaluable if you are uncomfortable with what you are being advised. Forums like this are fantastic sounding boards, Prostate Cancer UK offers free phone line support from trained specialist nurses in pc.
3. No two cases are alike. Age , family history, psa , biopsy, current health are just a few things that might help to assess what treatment is right for you and how to manage what level of risk.
That’s it !
As said above I will write again after the mpMRI.
Regards to all, Les
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Thank you for coming back to us with so much detailed information.
Fingers crossed for the UK Mp MRI results.
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Great info Les - thanks so much for sharing it!
Just a few things I’d personally like to reiterate based on my treatment in Toulouse.
My PSA had reached 7.1 (ng/mL) when I was operated on at age 53 - no symptoms, no issues, no indication of anything wrong whatsoever. My first ever test result age 50 was 4.1 (ng/mL)
My eventual biopsy was performed under general anesthetic - no issues. 15 cores / Gleason 3+4
In total my case was ‘managed’ by a team of 3 consultants from 2 different specialist cancer centres. Plus loads of other wonderful medical professionals!
IRM & IRM Multiparamétrique (IRM-mp) are widely available and used in France. They are used alongside the other scanning methods - bones (scintigraphie), full body / tissue (TDM / PET), ultrasound (Echographie)… etc
At age 53, and after numerous (incredibly useful) consultations and reviews of the 3 options available to me (active surveillance was not an option) - I wanted the bastard out of my body! I considered myself too young to see how things panned out. As my lead consultant told me - some guys just up sticks and walk out of his office when given the diagnosis. Some in denial, some to get on with their bucket list.
As things turned out - around 80% of my prostate was cancerous - remember: no symptoms, no issues, no indication other than a gradual rise in my PSA level indicated on my annual full bloods (instigated by my MT at age 50).
I know I bang on about this - but please guys, consider annual PSA testing if you’re not already in a programme. The likelihood is that my cancer started to rear its head in my late 40’s. A high PSA reading DOES NOT NECESSARILY MEAN YOU HAVE CANCER - but it MAY be an indicator of something to investigate. Remember, currently more men die with prostate cancer than from it.
YOUR BODY - YOUR LIFE - not that of your GP / MT / Consultants…
One more thing though - I simply couldn’t have coped with any of the crap around prostate cancer without the support of my gorgeous girl, family and friends. They made me feel normal when I felt anything but! Not easy for those around you - still isn’t some days ! 
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