Four questions, four priorities – BPC patient describes his methodology for choosing prostate cancer treatment
“At Birmingham Prostate Clinic, we have invited patients to share their experiences ever since the service was established in 2006. We know that prostate cancer and the choices patients face are very challenging and that it is beneficial for experiences to be shared and reflected on. I believe this account from Mr Harris is particularly helpful and perhaps should be read by all men considering treatment for prostate cancer because the clear and methodical rationale Mr Harris uses can be taken and applied to your own decision making process. I would like to thank Mr Harris and indeed all the patients who have shared their experiences to help others.”
Mr Alan Doherty, Consultant Urologist, Birmingham Prostate Clinic
Robert Harris*, aged 57, who lives in Staffordshire and works in the public sector, describes his experience of prostate cancer diagnosis and treatment.
“My whole experience of prostate cancer has been unequivocally life-changing. It was, of course extremely distressing to be diagnosed with cancer and the subsequent journey I have travelled has prompted me to completely re-evaluate the priorities in my life in terms of what is important – and what isn’t!
“Prostate cancer appears to be singularly unique in the way that the patient is dealt with. You receive information about the range of treatment options available, but learn that they all carry significant risks to the future quality of your life, notably incontinence and erectile dysfunction. The scary reality dawns on you that not only do you have something that is potentially life-threatening, but there are no guaranteed outcomes following treatment. Furthermore, the all important decisions about how this insidious disease is treated are basically down to you to decide upon.
“My own journey started two years ago when I decided to get a PSA test. The only reason that I considered having this test was that a colleague had been diagnosed with prostate cancer and he urged me to have the test. I was however dissuaded when I saw my GP. He said PSA results by themselves were inconclusive and tests were not normally offered unless there were circumstances to warrant it, such as symptoms … and I hadn’t any!
“So I left it for another 18 months, until by chance I saw an advert in the local newspaper in March 2012 promoting a free PSA testing event so I went along for the test. Several weeks later I was told that I had a slightly raised PSA level and was advised to see my GP. A second PSA test followed in April and although the level had reduced it was still elevated so my GP carried out a digital rectal examination (DRE) and concluded that I should see a specialist.
“When I met the specialist in May, he carried out further tests that included ultra sound imaging, urine flow and another DRE. I was then referred for a biopsy at my local hospital, which I had in June. Before I was told the results of my biopsy, I received letters inviting me to have an MRI scan and a bone scan. When the letter about the bone scan arrived, I truly feared the worst. I guessed that there was something radically wrong, but still didn’t know exactly what I was dealing with. I decided to be proactive ‘as knowledge is power’ and pressed for answers and in a follow up phone call I was told that I had prostate cancer. This news was devastating and I was hit by a tsunami sized wave of fear that dwarfed my hitherto rational perspective. Panic set in about not being around to enjoy retirement with my wife and family.
“In mid July, I had an appointment with an NHS consultant. He told me that my type of prostate cancer was ideal for a new treatment called HIFU. I hadn’t heard of it before, but the consultant was very convincing, talking about it being a less invasive treatment that would eliminate the cancer and also reduce the risk of subsequent incontinence and erectile dysfunction. However, it wasn’t currently available on the NHS so I would have to pay for it.
“I’m not someone who is easily convinced and tend not to believe everything I’m told first time round, so I did my own research on HIFU and emailed further questions to the consultant. He was reluctant to give me a formal reply but offered a follow up phone call, but disappointingly, that didn’t happen either. I became concerned and angry that I had been lost as an individual ‘in the vastness of the NHS system’ and pressed ahead for a second opinion. I spoke to the chair of a prostate cancer support group who recommended Alan Doherty of the Birmingham Prostate Clinic. After checking out his credentials on the internet, I quickly arranged a consultation for late July.
“Both my wife and I very much liked the easy but professional manner in which Mr Doherty conducted the consultation and the way he responded to my concerns and our questions. He was a top practitioner in his field, a surgeon who was very experienced and demonstrated high professional integrity. Equally important to me, was the fact that he talked ‘to me rather than at me’. In my decision making process, I was looking for the best possible professional care and the fact that he was voted one of the UK’s top ten urologists in a poll of fellow professionals, gave me confidence in his judgement. Crucially, he gained my trust, which was fundamental and became a major comfort factor to me.
“Mr Doherty unequivocally recommended surgery as being my best treatment option. However, I was still attracted to the idea of focal HIFU as it offered a less invasive treatment with seemingly equal rates of success against the known key risks.
“Patients with prostate cancer are in a somewhat strange and potentially un-nerving position. You are told – ‘the bad news is that you have cancer, but the good news is you have a choice of treatments, so go and think about it and decide which one you want’. This felt alien and totally counter intuitive as not surprisingly, you don’t consider yourself to be in the remotest way qualified to make decisions of such magnitude! Your initial thoughts are, hey, you’re the doctor and have been to medical school, you’ve had the training and have all the experience, surely you rather than me are better placed to make this critical decision that will affect my chances of living ?
“The subsequent pressure to make the right treatment choice was immense, especially given the ramifications associated with getting it wrong. I thereby embarked on what can only be described as a learning vertical and approached the decision making process in the most structured and methodical way that I could.
“For me, the key challenges were gaining a better understanding of what was wrong with me, (i.e. knowing as much about the cancer as possible, including its aggressive nature, location and amount), reviewing the treatment options available, their associated risks and costs in order to find the best one for me. Then deciding who was best to carry out my preferred treatment together with when and where it should be done in order to give me the best chance of survival?
“I had four priorities from treatment, which I placed in the following order of importance:
- I wanted to be cancer free – this was ‘mission critical’ as all the others were about quality of life as opposed to life itself
- I didn’t want to be incontinent
- I wanted to retain my erection functionality in order to maintain a full sexual relationship with my wife
- Avoidance of BPH symptoms (benign prostatic hyperplasia or an enlarged prostate)
“In terms of meeting my first priority, I found that HIFU didn’t offer sufficient certainty about its long term effectiveness and my research raised more questions about this relatively new treatment than there were answers available. In its simplest terms I was told that focal HIFU would deliver a ‘sniper like’ attack on the tumour identified in the MRI scan. However, it wouldn’t be effective against any smaller cancer cells which may be present and were at an earlier stage in development since these were unlikely to have been picked up in the MRI scan and would not therefore be targeted by the treatment. HIFU did have an advantage in that if it was not initially effective in clearing all of the cancer, it could be repeated or other treatments tried. However, that advantage was double edged in that if surgery subsequently became necessary following HIFU treatment, it reduced the chances of success in the two main risk areas of incontinence and erectile dysfunction. Surgery on the other hand offered much clearer prospects of cancer clearance.
“The continence rates I was given for both HIFU and surgery were equal at 96%. Comparisons of achieving full sexual function at 12 months after treatment for patients like me were 90% for HIFU and 86% for nerve sparing surgery with Mr Doherty. Finally, it was clear that surgery would eliminate any future problems with BPH whilst HIFU would not.
“The tipping point for me was the clear advantage that I felt surgery had over HIFU in terms of being free of cancer in the long term. Although HIFU offered a small advantage (4%) over surgery for priority three (erectile functionality), it was not significant enough to outweigh the weaker position it held in terms of priorities one and four, particularly being clear of cancer, which was my overriding priority.
“I wanted to know that the person treating me would be the top person or at least one of the leaders in their field, someone technically proficient with ‘bags of experience’ in the procedure and not someone who was at an early stage in learning their craft. I also wanted the doctor to be transparent about their results to-date and willing to discuss them fully with me. Above all, I needed to have full confidence in my chosen doctor.
When to be treated?
“When I was diagnosed, I was told that I basically had a three month window from the date of my biopsy in which to decide upon and have the treatment before the cancer developed further. This sounds like a relatively long time, but considering that nearly six weeks had already elapsed between the biopsy and me seeing the NHS consultant, the remaining six week period was in fact quite a short and very stressful time that passed very quickly. This was especially so given the amount of information that I needed to gather, the learning that was necessary and the task of making the actual arrangements for my chosen treatment.
“A decision by my preferred London based HIFU consultant on whether I was suitable for that treatment would have taken longer, but more importantly, it would also have taken me outside of the recommended treatment window. Nerve sparing surgery was available more quickly, which was another important factor in my decision-making.
Where to be treated?
“I was prepared to travel to get the best outcome. Consultant surgeons operate at more than one hospital, so having determined whom I wanted to treat me (i.e. Mr Doherty), I found out where he had his best results.
“In August 2012, I had an open (nerve sparing) prostatectomy performed by Mr Doherty. I was of course quite anxious, but when I went for surgery, I did so in the knowledge that I had chosen my treatment following detailed methodical research rather than on the basis of gut feeling or a single opinion.
“Surgery was at around 2pm and by 7pm that evening I was sitting up in bed and texting my wife and friends to say that all had gone well. I had minor discomfort but nothing that I would describe as pain and thankfully that has continued to be my experience to-date.
“Four days after surgery, Mr Doherty, who was then away on holiday, still found the time to call me to ask how I was getting on. It was a small consideration, but it fully reflected his overall approach and was important to me as it personalised the experience and made me feel that I counted and was not merely a statistic.
“It is now three months after my surgery and I’m delighted to report that my erection capability has already returned 100% i.e. it is exactly the same as before the operation. My continence function has also recovered quickly and is now around 98% of the function pre-surgery. I am still working hard on my pelvic floor exercises and have the support of an excellent specialist physiotherapist who has advised me that I will be completely dry in just a few more weeks. All of which was fantastic news.
“The results of the pathology test certainly confirmed that I had made the right decision too in terms of having surgery. It showed that my prostate had considerably more cancer than had been detected in the MRI scan. Seeing pictures of this was really quite scary and unsettling as had I have chosen HIFU, then I would now be facing a far more challenging and uncertain future.
“I have also now received the result of my first critical post operative PSA test from Mr Doherty who advised me that the reading was 0.01, which was the best news possible and the relief that I felt was simply beyond words.
“The physiotherapist accurately summed up my position:
- I had good luck in going for the PSA test when I did
- I was fortunate that my prostate cancer was localised and contained (although pathology results showed it was just reaching the wall of my prostate)
- I had made good decisions in terms of treatment
- I had good surgery
- I also had a good attitude in that I was positive and worked hard on my pelvic floor exercises, which was essential for regaining control of my urinary function
“Bottom line – I’ve been very lucky!
“Along the way I have also learnt that the current NHS approach of doing the MRI test after a biopsy makes little sense – it would be far better, both in terms of the results you get and the overall treatment pathway to have the MRI carried out before the prostate is affected by the invasive biopsy. Furthermore, enhanced MRI scans as used at BPC, offer a considerably more detailed and accurate picture compared with the standard MRI scans used in the NHS. Whilst I do believe that HIFU treatment will become more prominent in the future, it has to be used in conjunction with better MRI technology that provides more precise and accurate readings for the targeted treatment.
“I hope that sharing my experience may be of value to the many men who are faced with this prostate cancer dilemma – you need to choose a treatment, but how to choose?”
*The patient’s name has been changed to respect his wish for anonymity
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