The lovely but frugal (“they don’t do tea in the nice shiny coffee shop over there but there is hot water in the bathroom tap”) and neurotic video director, Sarah, from 39. Lights, Camera and Action. What would Denzel do with my week had recommended me to the Event Director of a group called “King’s Takes on Cancer“ (KTOC). They wanted me to do a talk as part as a three person panel…..
Eda is a twenty something MSc Neuroscience student at King’s College London.
Not a native of this fair land, she came over in September of last year. I thought she originated from the mighty Trump country across the big pond, with her American accent. I got that wrong however as she is actually Turkish. A testament to her sweet nature she took the mistake in her stride without batting an eyelid. Try telling a Canadian they are American or someone from Greece they sound Italian and you will get something entirely different.
When I first met and her colleagues at the modern and spacious Guys hospital lecture building, they were very welcoming. As part of the general chit chat and introductions, I asked them what they were studying and how long they had to go etc. One was a neuro something or another and another was a bio medical thingy ma-jig. With my brain cells suitably fried I didn’t object when they said we could set up the room that we would be presenting in.
Eda has always enjoyed getting involved with charities and societies throughout her high school and college years. She joined KTOC because of a personal experience with cancer in her family. Together with KTOC’s president, Laura, they brainstormed many events, ideas and projects to fundraise and raise awareness. Her brainchild was to organise monthly panels where three speakers (related to cancer research, patients, recovery, treatment etc.) that each have a different background and representing a different aspect will talk for 30-20 minutes each and then take questions. These events will not only target the students and faculty but also patients and patient’s families. It will be held on the Guys/King’s collage hospital campus and she hopes to make it an established monthly event that is motivational, raises awareness, creates a platform for people to ask their questions, see what is happening in cancer research and the future.
This was to be Eda’s second panel, the first had been about bladder cancer. I was invited to be one of the panelists for this second panel that was held on the 28th February 2019. A big thank you to Joanne and Julie who came to support me. I was in the esteemed company of Mr Rick Popert and Chris Cottrell, who each have very interesting and important sides of the prostate cancer story.
Mr Popert is a clinical consultant urological surgeon. Though Eda may struggle to teach me the finer points of ‘Wernicke-korsakaff syndrome’ she did teach me a little regarding the hierarchy in the medical profession. We all know of Junior Doctor, Doctor, Consultant. Well when they get higher than that they are referred to as Mr. Consider that ammunition in your next pub quiz. Yes, you are very welcome!
When Mr Popert was a doctor it was routine for 70% of his patients to have metastatic prostate cancer. Now most patients either have no or mild symptoms, the PSA test was the game changer. He understands that if there was a total screen program you would see many men that may have prostate cancer, but it is so slow moving they are unlikely to be troubled by it. He said that PSA is sometimes referred to as ‘Promotion of Stress and Anixety’ for all the bad press that it has received. He believes that a national screening program should exist for those at highest risk – those men with siblings that have been affected with prostate cancer or a history of breast cancer in the family breast. These man should be tested at forty to establish a baseline PSA.
One of the turning points in his career, many years ago, was when he was asked by a mountain climbing patient if he would perform a transrectal biopsy on him as he was afraid that he had prostate cancer. He performed the operation but the patient developed life threatening sepsis which led him to intensive care and dialysis. The patient was never able to climb again.
There are two types of prostate cancer biopsies, transrectal and transperinal. The transrectal or transfetal biopsy as it is otherwise known involves accessing the prostate via the anus and rectal wall. The important point to note is that only one side of the prostate is accessed directly this way. Last year 15,000 transperinal biopsies were performed compared to 35,000 transrectal biopsies and out of these 35,000 operations, 1% go onto develop life changing sepsis and some patients may have died. The transperinal biopsy involves accessing the prostate via the perineum, which is the skin between the scrotum and back passage.
After the mountain climbing patient Mr Popert never performed another transrectal biopsy and has become the UKs’ leading authority on the transperinal biopsy. Using this procedure the chance of a patient contracting sepsis has been practically eliminated. Just as important because the whole of the prostate can be accessed via this method and not just one side. The detection rates have massively improved because with the transperinal biopsy it was discovered that,
- 36% of men that had a clean transrectal biopsy, actually had undetected prostate cancer
- 37% of the men who were deemed suitable for active surveillance (no treatment, regular tests to check for changes) actually had significant prostate cancer
- 63% of men tested overall were discovered to have prostate cancer
Mr Popert considers himself now the man on top of the mountain. Looking down from the top and currently striving to make the transperinal biopsy the biopsy of choice. There are still a number of hurdles to get over, but it is moving in the right direction and he will achieve it.
Chris Cottrell is the man you want to be sitting next to if you are unfortunate enough to be in an aeroplane that has just lost both engines, the tail fin has sheared off and you have just seen the top of the pilots parachute out of the cabin window.
At twenty five years old, Chris was diagnosed with non-Hodgkin lymphoma. The lymphatic system is part of the immune system and is a network of vessels and glands spread throughout the body. The treatment, at that time, was a course of radiotherapy. Fast forward to 2011 and after detecting some classic prostate cancer symptoms he went to have a PSA test. His resulting PSA was 42. He then had an MRI which revealed extensive cancer which had spread to his lymph nodes. His transperinal biopsy showed that ten out of ten samples on the left hand side and two samples out of five on the right hand side were cancerous. His Gleason was 4 + 3 – it was very aggressive.
In 2011 surgery was not possible under these circumstances and the previous radiotherapy, he had at twenty five, made that option untenable as somehow his early radiotherapy treatment notes had been lost.
Chris was given a grim diagnosis.
He started hormone treatment and suffered horrendously from the side effects especially the constant and vicious hot flushes. He cried daily and became depressed. Ultimately after an initial fall in his PSA it began to creep back up again. His surgeon warned him that further radiotherapy came with significant risks. He could lose his bowel and require a bag. He was also advised against further surgery but eventually found a surgeon who would operate. He went on to have a non-robotic open surgery and had his prostate removed with both sets of nerves.
After the operation his PSA was undetectable and six weeks later he was no longer incontinent and was completely dry. In 2013 his PSA was detectable again. He estimated that he had about a year to live.
He was given conflicting advice from doctors. One suggested that active surveillance, while another suggested he try hormone treatment again but after his last experience he was not keen. The doctor that suggested more hormone treatment also suggested that he got fit and join the gym.
Chris did just that, he joined a gym. He lost 12Kg in weight, he felt stronger and fitter than he had ever been. His PSA began to fall. Being a chartered accountant Chris likes his numbers. Soon he wondered if his PSA decreasing was due to the number of steps he was walking regularly. Over a number of years he soon began to accurately predict what his PSA would be, astounding his doctor.
In 2016 a MRI scan would reveal a tumor in his prostate bed and his bladder did not look good. Initially Chris thought that he had developed neuroendocrine prostate cancer. This is the rarest and most aggressive form but luckily it wasn’t. He went on another course of hormone treatment (with none of the side effects this time around) and chemotherapy. He is convinced that his level of fitness has been working favourably with the medication. His doctor also said that he could see on his back where the hair follicles had been burnt with the radiotherapy twenty five years ago so he was confident they could avoid these areas.
Chris went on a seven week course of high radiotherapy and is today currently on active surveillance and feels better than he ever has.
Out of these experiences he has,
- Funded a three year programme at Kings to research prostate cancer and exercise
- Conducts around 150 educational talks and seminars per year
- Has set up an exercise clinic with a fitness professional
- Working to put all three of these strands into a digital platform
Very esteemed company indeed.
Then there was me…
3 thoughts on “41. Did the panel save me a parachute”
I had a transrectal biopsy in Manchester in Feb 2018 and contracted septicaemia ( e coli) and was hospitalised for 8 days and luckily cured with IV antibiotics, fluids and sometimes IV paracetamol and great nursing! I was told I was unlucky as getting an infection via the biopsy was only a 1 in 30 chance. The biopsy revealed I had intermediate risk PC Gleason 3+4 which was confirmed after my radical treatment (robot assisted prostatectomy). So at least the biopsy result proved accurate. During my diagnostic phase I had no knowledge of the existence of the transperinal biopsy …after my experience the sooner it becomes the first choice biopsy metjod the better.
Many thanks for sharing your story, I am just glad it all worked out for you in the end. I have tried to give a good summary of Mr Popert’s and Chris’ presentations but you need to see them to get real justice. It took ages to just convert my presentation so I hope to have them ready for next week. Please watch out for them as they really fascinating and powerful.
[…] gentleman called Chris Cottrell, said he could predict what his PSA was going to be before he had even had the […]