Member Story 1 - Kevin "First Laparascopic Prostatectomy at Leighton"
About 12 years ago my GP had a practice Sister who conducted well man clinics.I saw her on a minor matter, holiday inoculations I think it was.
We had a general discussion about diet, tested my Blood Pressure etc. She then suggested that I had a blood test which included a PSA test. It resulted in a level of 10.7. I had a call from my GP to come in, had a digital examination and was referred to the Urology Unit at Leighton Hospital to be under the care of the then consultant Pradip Javle.
I went through the usual procedures culminating in a diagnosis of T2 prostate cancer confined within the prostate gland. Mr Javle gave me various treatment options but recommend surgery.
At this point I was given a wallet produced by the Leighton Hospital PC Support Group which contained various information leaflets and contact details.
Just before the date of the operation, Mr Javle had been to see Professor Barbie, a prostate cancer specialist, in Paris. Subsequently, Professor Barbie agreed to come to Leighton Hospital to demonstrate a laparoscopic method that had been used in France for some time and I was asked if I would agree to be the patient for this procedure. (All the surgical equipment was supplied from France).
The operation lasted over 8 hours, partly because it was used for teaching purposes, which I was fully aware of.
I came out of surgery without a catheter fitted but had to have one fitted which I hoped would be removed after two weeks but actually lasted four weeks. I was given advice on pelvic floor exercises which I did rigorously. Eventually my continence returned and apart from the very occasional lapse I am completely ‘dry’.
One consequence however is erectile dysfunction. This does not prevent an ‘adjusted’ sex life albeit without penetrative sex.
This is my story and we are all slightly different but if this helps anyone with their fears and concerns then I will be very happy.
Being a member of the Group has helped me greatly and I would strongly recommend that all new patients join. There is much to be gained by doing so.
Kevin. Kevin is happy to offer further information and advice. Click his name for the Group Secretary's email address to ask to be put in touch with him.
Member Story 2 – David "My journey from TURP to Prostatectomy"
In 2006 I had major spinal surgery to relieve compression on my spinal cord and to fuse 3 lower vertebrae and support that fusion with titanium rods and screws.
Some months later, possibly because of nerve damage, I was having problems with urinating. My GP did a digital rectal examination of my prostate and finding it slightly enlarged, referred me to a consultant urologist, Mr Irwin. I had a prostate biopsy, which was clear, but I was advised to undergo a procedure know commonly as a TURP (transurethral resection of the prostate). This involves coring out the centre of the prostate, as you would an apple, to reduce pressure on the urethra, and help urination. It does however result in dry ejaculation, which is something that you can get used to after a while.
The TURP procedure was a success, but the biggest shock was being called back in, just a few weeks later, to be told that in the prostate material removed by the TURP were cancer cells.
In the initial biopsy done beforehand, needle probes had obviously missed the cancerous area. My Gleason score (cancer score) was 3+3. That is, as I understand, the lowest score for a cancerous prostate. The options given to me were watch & wait, radiotherapy or prostatectomy (surgical removal of my prostate). As the Gleason score was low, I chose the watch & wait approach.
For the next 9 years, I went to my local health centre at Ashfields in Sandbach, and had bi-annual blood tests to check my PSA level. In that time my PSA was up and down between at it’s lowest 2.5 and it’s highest 5 and there seemed no great cause for concern.
In August 2015, my latest blood test showed a PSA level of 6.1 and my GP advised that I be referred back to Urology at Leighton Hospital. Another prostate biopsy and MRI scan showed that the cancer was becoming more aggressive and my Gleason score was recalculated at 4 + 3. Action was advised in terms of either radiotherapy or surgery to blitz or remove the tumour.
Choice of Prostatectomy or Radiotherapy?
My wife and I had a consultation with a surgeon, Mr Oates, from Stepping Hill and a consultation with Dr Wylie, from Christies. Both of them put all the facts in front of us, surgery v radiotherapy, but neither of them advised a course of action. I chose the surgery option, and underwent a robotic laparoscopic radical prostatectomy at Stepping Hill Hospital in Stockport in early December 2015, performed by Mr Jeremy Oates. I was in hospital for just one night’s stay and released with 5 small abdominal wounds from the laparoscopic surgery and with a urinary catheter fitted.
Unfortunately after the catheter was removed, I found myself with no bladder control and that is still the case 9 months later, despite regular pelvic floor exercises. I am now being referred back to Stepping Hill Hospital for flexible cystoscopy (an internal camera examination). They will determine from that whether further surgery can help.
OK so my surgery has resulted in incontinence and erectile dysfunction, but both can be dealt with or overcome, one way or another. You just have to adjust your expectations of what can be achieved. It is not the end of the world !
The surgery was not a 100% success, as the tumour was very close to the outer edge of my prostate, but at least I am being regularly monitored again and my PSA is currently almost undetectable at 0.01. I will only know sometime down the line whether or not further treatment is required, but I will deal with that if and when it arises.
Joining the Prostate Cancer Support Group has helped me to find a good solution that enables me to deal with my incontinence effectively and has given me hope, support and a new focus.
My advice to anyone facing Prostate Cancer would be to stay positive, don’t overthink the situation, and just tackle each development one step at a time.
Remember the importance of family support. Like most cancers, it is not just the one person that has to face the fear and anxiety that cancer diagnosis brings.
Many men have been along similar journeys to this and are always willing to share their experiences and support each other where possible.
David. David is happy to offer further information and advice. Click his name for the Group Secretary's email address to ask to be put in touch with him.
Member Story 3 - Michael "A visit to Sainsbury's Changed my Life"
On the 10th September, as I came out of Sainsbury’s store in Nantwich I saw a group of people giving out leaflets to raise awareness of Prostate Cancer. Initially, I walked past them as I had seen my doctor a year or so ago (I appeared to have some of the symptoms) and my doctor, having done a PSA blood test told me that all appeared to be ok and mothing further was done at that time.
To the G.P....
But then something made me go back and collect their leaflet. I also took an information brochure which contained a tick list. I completed that list and was surprised how many of the symptoms applied to me. Instead of taking my shopping home I called at my GP’s practice and handed the tick list in, asking them to give it to one of the GP’s. A doctor phoned me later, and having answered her questions she organised another PSA blood test. When the results came back I was called in to the surgery. My PSA test result was 13.3 and a physical examination was done. This showed an enlarged prostate, to the degree that the doctor gave me a “fast track” referral to the consultant at Leighton Hospital.
...and then to the consultants...
The consultant asked me questions and then did his own physical examination. He also said that my prostate was very enlarged, but further said that he had identified an “area of interest”. This resulted in an MRI scan (confirmed the area of interest and found a second one) followed by a biopsy. I received the biopsy results on 30 th October. I have prostate cancer. The Gleason score is 4:3 which is not too bad, except that they suspect that on the “three side” things are much worse than the score shows, assuming that the biopsy needle did not capture it. The MRI scan interpretation says T4 for the “4 side” and a probable T3 for the “3 side.” Treatment is needed now, of which more later. I have since had a whole body bone scan to see if it has spread yet, and appointments with two further consultants, Dr. Wylie from Christies hospital regarding Radiotherapy, and Mr Brough from Stepping Hill Hospital to investigate the possibility of surgical intervention.
I need to say that in addition to this, I have been very stressed and emotional for the last 10 weeks because my dog Heidi was diagnosed 10 weeks ago with a very aggressive form of Lymphoma and her life expectancy was said to be 6 to 8 weeks with steroid treatment (less without). I love her to bits and still find this very hard. She is still with us, but not for much longer I fear.
Radiotherapy in Prague?
I was interested in getting treatment at the Proton Beam centre in Prague, which BUPA said that, subject to their own assessment, they would pay for. You will be aware that it does much the same thing as our radiotherapy, but with a claimed lesser risk of side effects. My treatments plan from Christies put paid to that as it indicated that a more aggressive approach was needed. I accepted their plan and have started three months of hormone therapy, after which I will have High Rate Brachytherapy followed by “traditional” Radiotherapy.
Our Support Group
A few weeks ago now I telephoned David Laundon, to ask him to pass my thanks on to the volunteers who had given up their time to give these leaflets out, because they have literally “saved my life.” He was pleased to receive my call, and during the course of a chat he told me that the attendance at Sainsbury’s nearly did not happen. Apparently Sainsbury’s receive a very large number of requests by people and organisation to give leaflets out and seem quite cautious of new organisations. Happily for me they agreed.
Thanks to Olwyn of Sainsbury's
I asked who the Group had dealt with at Sainsbury's and was told that it was a lady called Olwyn Paton. I telephoned her to thank her and tell her my story. I first spoke to Amy from their commercial department who told me that Olwyn would not be in till later, but that I should make myself known when I next called in to the store as she felt certain that Olwyn would like to meet me and hear my story. I called in later that day and met both ladies. They were very moved when I told them that by agreeing to allow the Support Group to give out these leaflets they have probably saved my life. I thanked them very much. It was quite emotional for all of us, and none of us had dry eyes. Amy came out to my car to see Heidi who was waiting for me in the car.
Michael writes "I would have come to your meeting to thank you in person, but am having a much needed weekend away in the Cotswolds visiting the Christmas market at Morton in Marsh, so I am sending this to David so that he can read it out to you. I should add that I spoke to, and e-mailed Look North West at the BBC in Manchester to ask them if there was a way that they could publicly thank you and Sainsbury’s on my behalf. Sadly it was not a “slow news day” so nothing was featured, but they did suggest that I nominate you both for a “Christmas Star” award, which I did by e-mail a couple of days before they announced the scheme for this year on air. Thank you all so very much from my wife and myself, plus Heidi (taken 3 weeks ago - below)."
Sadly, Heidi died before Michael and his wife could set off for the Cotswolds.
Wellbeing Event for NHS staff
1 May 2019 10:00–15:00
Group AGM at Leighton Hospital, Crewe
11 May 2019 10:00–12:00
PSA Testing at Congleton Golf Club - Open to Non-Members
30 May 2019 19:00–22:00
PSA Testing at Ashton-under-Lyne Golf Club
15 Jun 2019 10:00–13:00
PSA Testing at Warrington Golf Club
29 Jun 2019 12:00–12:00