"Prostatectomy - Preparing for the After Effects"

About: Bradford Royal Infirmary / Medical oncology Locala Community Partnerships CIC / Continence advisory service

(as the patient),

I was diagnosed with low grade prostate cancer (Gleason 7, subsequently downgraded to 6) in September 2013. Following nine months on active surveillance, it was for various reasons that I decided to opt for a robotically assisted laparoscopic prostatectomy: I was relatively young (57 years old); I had always maintained a fit and healthy lifestyle; I had found it challenging from an emotional perspective, knowing that I was living with cancer, however low grade; I had been rather unnerved by recent media reports highlighting some concerns over PSA testing and biopsy sampling in providing a sufficiently accurate picture of the extent of the disease.

Although aware of the likely effects of having a prostatectomy, at the time I was almost entirely concerned with eradicating the cancer. I had researched the clinical side of things fairly extensively, yet without focusing on what would then transpire. So, following a successful nerve-sparing prostatectomy in June 2014 at Bradford Royal Infirmary and my delight at the speed of recovery from surgery, I was completely taken aback when following removal of my catheter, I realised I was quite severely incontinent. I felt a sense of humiliation and embarrasment as I came to an understanding in the days and first weeks that followed, that although starting a regime of regular pelvic floor exercises, it could be months before I would see any improvement.

It was only after my prostatectomy and the removal of cancer that I visited the Incontinence Clinic in the town of Huddersfield, did some research and realised that the process of regaining full continence is assisted by performing pelvic floor exercises not only after surgery, but before as well, and in conjunction with biofeedback.

It is now almost four months since my surgery. I returned to work after a month and although I continue to wear a pad when out and about and when exercising, I am steadily regaining both continence and confidence. I hope that the pads will soon become a thing of the past.

I have nothing but the utmost praise and admiration for the skills of the clinical team that carried out my surgery at BRI. I am truly thankful that they have removed my cancerous prostate in what is a complex, intricate and lengthy operation in as minimally invasive a manner as is possible. The fact that I have recovered from surgery so speedily is testimony indeed to the expertise and talents of Mr Sanjai Addla, my uro-oncologist, and his staff. I am most grateful, too, for the assistance and advice I received on my visit to the incontinence clinic and the subsequent help and support given by nurse Felicity Kendall, to enable me to begin the path to the recovery of continence.

I would, however, like to suggest that, as part of the extensive pre-operative meetings that take place, there is greater emphasis on the consequences of surgery; that despite focusing on the primary concern of removing the cancer, time is given to addressing issues of incontinence, teaching pelvic floor exercises and ensuring patients start these well before their surgery. Perhaps means should be sought to ensure greater and more seamless communication between clinical and incontinence teams so that patients are more fully prepared for the after effects and are less likely to be humiliated and embarassed as I, and no doubt countless others have been.

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Responses

Response from Nigel Grimshaw, Customer Engagement Manager, Intergrated Adults, Locala Community Partnerships We are preparing to make a change

D001,

Thank you for sharing your story with us, and also your suggestion on how to improve the care provided to individuals venturing on a similar patient journey. As a team we are really pleased that following some excellent care and good advice you are starting to get your life back to normal.

There is clear researched evidence that stresses the importance of patients engaging in pelvic floor rehabilitation both pre and post prostate surgery. However, we do realise that often patients may not be referred to our service until the later part of their treatment program. As you appreciate this can be for various reasons such as individual health priorities. As a service we are more than happy to see patients before they have their prostate surgery.

We are also actively working with our local hospital providers to secure a more timely referral into our service. Once again we thank you for your feedback and wish you well along your journey to good health.

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Response from Bradford Royal Infirmary

Hello, and first of all I must apologise for you not receiving a response at the time of your very useful and detailed feedback.

This was due to a technical problem which means some posts were not coming through to us. We are working with NHS Choices to put this right.

It is very interesting to read your post, as the team treating people in your situation have, as a result of other patient feedback on this and similar issues, including a patient speaking to our Board of Directors about his prostate surgery experience, made some changes which include improving information for men facing this surgery, and for their partners/spouses.

This includes offering all patients the chance to come to an education session before their surgery, where the surgeon, physiotherapist, specialist nurse, and a patient and, if appropriate, their partner, all speak about what to expect and dealing with the surgery and its aftermath. They are also working on improving written information for patients for both before and after the surgery.

If you would like to know more about this please do contact me on patient.experience@bthft.nhs.uk as we are keen to keep involving patients in this work.

However I am also really pleased to hear about the good care you received from the team, we do get a lot of positive feedback about them, and last year they were runners-up in the Trust awards for Team of the Year, so their commitment to improving care for patients has been formally recognised.

I hope your recovery continued well, and we do appreciate your feedback.

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