Need to vent about GP's

Good Morning Psticks 

i am with you here with your rant. The NHS guidelines state that any man over 50 can ASK his GP practice for a free PSA test. I think the two issues are:

* The cost to the GP practice.

* I am sure I read some where on the NICE website that they didn't consider the PSA test to be accurate and that National Screening would not be cost effective.

I, like you am very pro-active in spreading the word - I always have a "man of men" badge along with a blue ribbon badge on my clothing and have quite a few - shall we say cancer awareness t-shirts. Since I have been diagnosed I have lost count of the number of people I have spoken to (it's in double figures in my "local" pub alone).  Sadly this has let to a few positive diagnoses - but the positives for me is they have been found before they have got any worse!

It's a National disgrace there is no screening programme!!

I do know that we can all help here - I have been on to my MP and I have been supporting some of Prostate Cancer UK's campaigns. Here's a link to our Campaigns page:

https://www.macmillan.org.uk/advocacy/campaigns/all-our-campaigns

I am away from the forum working on another Macmillan project with the campaigns team so I will bring up the PSA testing for men at our next meeting.

Thank you for your continued support.

Best wishes - Brian.

I don't agree with you.

I had a PSA test after watching an awareness campaign video 8 years ago. My GP tried to disuade me but I insisted. My PSA was 3.5 and I was referred to urology at Royal Surrey. I ended up having a template biopsy to "rule out" cancer.

The biopsy results came back with one core Gleason 6, less than 1mm. 

Since having the template biopsy I have suffered with chronic prostatitis and my mental and physical health declined as a result.

I have been on active surveillance for 8 years. I have been offered treatments but I declined them all.

I am against routine PSA screening. It will lead to discovery of low grade non aggressive cancers for which many men will decide to have life changing treatments they don't need. Awareness campaigns should be more responsible.

Hello David193 

i am so sorry to read of your poor experience and continuing health issues.  Whilst i am aware that there are risks with every medical procedure - I still think for the volume of people tested the risks are minimal.

For your age the biopsy is advised for males with a PSA above, 3.5 (yours was 3.4 according to your profile) so possibly your GP should have waited. I also understand the recommended cores to be taken  on a template biopsy to be between 10 and 12. Again you said 38 were taken in your profile. 

It's a medical decision made by your team so I can't comment on it but as with all medical procedures you are made aware of the risks before it is undertaken.

David193 said:

I have been offered treatments but I declined them all.

At the end of the day i respect your choice and understand why.

i agree before anyone is tested - even a blood test or a Digital Rectal Examination (DRE) they should be told of the potential risks 

Best wishes - Brian

Hello David193 .

I believe that the current guidelines have changed since your experience 8 years ago in that further non invasive imaging techniques are used before a biopsy is thought necessary. Unfortunately, men seem to be diagnosed at an earlier age, the question then is what to do with that information. There is a lot more knowledge about what factors might influence how slow or fast a prostate cancer might grow which then informs the treatment plan from watchful waiting up to recommendations for active treatment. At least if you are aware of the diagnosis you have a choice of what you want to do, you can be monitored regularly, but also it can pick up earlier if the cancer decides to escalate at some point.

I agree that for some men, their first reaction is 'I want it out' or I want some other treatment which can have life changing effects. Men are often asked to make a choice about surveillance or active treatment in some form but aren't given the information they need to make that choice in the first place. It shouldn't be up to the different forums to help fill in the gaps to make sure that the right questions are asked, but that is the reality at the moment. Ultimately we have to be happy with our own decisions and respect that everyone is entitled to their own opinion which is just as valid for them.

Hi Psticks - I agree with everything you’ve ranted about.  However, I have always said that if there was a national screening programme for all men there would be a tsunami of cases that would quickly overwhelm the NHS. I don’t have the solution to this conundrum.     AW

I hear what you're saying Alpine Wanderer and I agree. I've had an increasing feeling that this reluctance to actively deal with PC from the GP to NHS is down to money. The ambivilence towards the reliability of the PSA blood test also promotes this attitude. I am so glad I went through the system before King Charles had his problems. I would think that this has also increased pressures on the NHS dramatically by increasing awareness. Which is a good thing. 

But what a situation. That there are blokes walking around not knowing that they have PC who can be cured. But may not know until things have drastically escalated. I appreciate and acknowledge David193 point of view and am saddened by his situation. But isn't it better to know so you can take preventive action IF that's what you want to do?

I think in this age we have take ownership of our health. In future we cannot just rely on the benevolent NHS to gently steer us down the road on our PC journeys we will take. We have to be assertive and in some situations apply firm pressure to ensure we receive the correct treatment in good time. 

For instance I really appreciate the comments on the forum regards telling the Health professional that we will accept any cancellation and travel anywhere for treatment. That tip reduced my waiting time for my Radical Prostatectomy by between 6-9 months. 

I don't know the answer to the situation or even if there is an answer. But myself, I'm going to keep boring and hectoring blokes to go for a PSA test and stand firm and make sure they get it. It's up to them to then make decisions if they need to. 

I'm also going to keep promoting Prostate Cancer UK and their campaign for National Screening.

Knowledge is power. 

Psticks you don't need to apologise for your words, they are very much in line with the thoughts of many of us.

My journey through PC treatment began in a very similar way, see my profile. I had no symptoms just that I knew some good friends who were either being or had been treated for PC and I thought it a good idea to ask for a test. My GP practice was reluctant at first but I insisted.

Like you from the date of my diagnosis I have bored so many others with my story in the hope that just a few more males will get a PSA test. I think it's worked with a few!

I doubt if our NHS could cope with many more PC cases per month, when I went for my biopsy I was told that the Royal Shrewsbury Hospital was doing sixteen prostate biopsies every week and calling in a contract medical team many weeks to do another eight. Here in the Midlands Nick Owen a BBC News presenter went public about his PC in August 2023 which caused a spike in PSA test requests and he has gone on to fight the cause.

Hello Osca2023 

Great news for you - a 4 week holiday in Europe - I like your style and you now have your Radiotherapy dates.

Enjoy the holiday -  - and I wish you well with the Radiotherapy. keep us posted.

Best wishes - Brian.

I find it bizarre that they went straight for a biopsy after a single PSA test in your case. My experience has been that they generally would only do biopsies after 2 or 3 consecutive rises in PSA because a single jump in PSA could be due to an inflated prostate or an infection. In my own situation they only took two PSA before doing a biopsy because my first PSA test ever showed it was at 79 and a couple weeks later it was at 80. If my PSA had been at 3.5 I don't think they would have proposed a biopsy after a single test.

Hi Brian, many thanks for your good wishes. Yes we're now wandering France, we had a week in Germany visiting a special (to us) car show with UK friends and then friends in the Black Forest for an evening meal.

The motor caravan life is a way we thourghly enjoy. 

Rod