This is a great Forum. So glad that I found it prior to surgery. So many brave and inspiring stories. Thank you. My name is Trevor Fearnley. I have been retired for six years, led a very lucky and happy life in Australia having emigrated here for £10 in 1972 with my new bride after a six week sea journey. I thought I was coming for two years, but 45 years later we are still here and loving it! Liz and I wouldn't want to live anywhere else.
I stumbled into finding out I had prostate cancer via a roundabout route. I always had an annual PSA test from the age of 60 onwards and the previous reading was 3.7 in November 2013. Then I had a Total Knee Replacement that went wrong after I contracted a Psuedomonas infection in hospital. Two years of treatment and constant blood tests (except PSA) eventually helped me find the right antibiotics - Ciprofloxacin - and get the infection under control. Then it was time to face up to getting a new hip. Saw the Orthopaedic specialist who referred me to a Rheumatologist to consider the risks of another infection during the operation and he in turn referred me to a Neurologist, as he thought I had mild case of Parkinson's Disease. The new specialist confirmed I did indeed have Parkinson's and ordered an MRI brain scan and more blood tests. The phone call from her in December 2015 told me I now had a PSA of 8.3 (just shows the wffect of missing one annual PSA test!) and she would like to refer me to a Urologist, Dr Raji Kooner at St Vincent's hospital in Sydney. Dr Kooner is a bit like the absent minded professor, brilliant but not so great on communication! He has a tremendous reputation, from the research I have done. He carried out a rectal examination on 29th January and confirmed he felt a thickening of the prostate. Next step a MRI scan at Randwick in Sydney. The results showed suspicious areas and I am told the MRI scan really helps the biopsy be more accurate. On February 9th I had the day surgery biopsy, and received the results on the 19th February.
Nine of the 23 samples were cancerous, I had a Gleason score of 4 + 3 which is a 7b. The tumor presented on the right side and lymph nodes could be affected. His recommendation was Robotic surgery, something he was confident would remove the cancer after carrying out over a 1,000 similar operations. He wanted me to have a PSMA nuclear scan to check that it had not spread into the bones.
On 26th February after the latest scan we met again and he confirmed that there was some uptake in the lymph nodes and the SUV, whatever that means, was 2.3 and he felt we should proceed with surgery. I asked if it had spread to the bones and he replied there was no evidence of this happening from the scan. Some good news at last! I politely suggested it may be a good idea to tell the patient the good news first. He smiled. (I used to run an advertising agency so know all about how to sell people good news.)
So surgery was locked in for March 24th, 2016, as they like to leave six weeks after the biopsy. In the meanwhile time I am trying to check that I have made the right decision. As everyone points out there is so much conflicting advice on the web, with everyone trying to sell you something different. To help me I wrote down my objectives and strategy.
My objectives were: live as long as possible; get rid of the cancer as effectively and as quickly as possible; manage the ED issues ( I already have some ED issues due to the Parkinson's and antibiotics I take everyday, however these are all fixed with Viagra, so hopefully this will not be any worse after surgery). Manage incontinence issues. (I also have some incontinence issues due to the Parkinson's however hope this will get fixed with time after surgery.)
Strategy: do research - this web site has been the best of them all. I am now confident reading so many actual case studies from unbiased people that robotic surgery is the right way for me to go. Lose weight and get fitter - have gone onto a Paleo diet and lost 6 Kilos (13.3 pounds) in 8 weeks; start pelvic floor exercises - with help from a physio. Get my mind into a positive frame - have written a diary of positive thoughts and experiences for 8 weeks, which I really recommend. So many good things happen in life that we forget about.
I think that just about tells the first chapter of my story. Thanks for reading it.
Now for the Op. Happy to receive emails from anyone with questions or suggestions.
I will update after surgery. Good luck to you all wherever in the world you may live.
Hi everyone, an update on my last post.
As you know I had clear objectives, a strategy and a plan of execution. Six weeks down the path I am happy to report positive outcomes. Surgery took place at St Vincent's Private Hospital in Sydney on March 24th. Dr Raji Kooner was the surgeon using da Vinci Robotic equipment. The operation lasted two and a half hours and he believed went well. I awoke not remembering anything hooked up to drips and monitoring equipment. My stomach was very sore however manageable. The first voice I heard was that of Liz, my wife of 45 years, and boy was it a welcome sound! She had attended every Doctor's meeting with me and was a vital part of my team.
I spent three nights in hospital, couldn't face any food and lost three kilos. Slept poorly the first night and they wake you every hour anyway to monitor blood pressure, pulse and temperature, but night two and three were OK. Getting used to the Catheter. Walked around on first day, had a shower and shave, sat in a chair. All OK. Stomach hurt like hell, but nothing impossible. Impressed on how little invasion there appeared to be from the surgery.
Day four and I dressed myself and showered myself and Liz collected me to go home. Very pleased with the level of care from the nurses at St Vincent 's.
Since then, (just 8 days ago!) I have walked, been out for lunch, helped wash up, so functioning quite well. I have had the Catheter out, wounds uncovered, and been quite active. I do become very tired around 4 pm and need a short sleep. Still struggling to control my incontinence and finding it really hard. Have resorted to wearing incontinence pants with a men's lining pad inside and that keeps me dry.
Well it is April fool's day today and this is the message I received on my phone.
"Dr Kooner here Mr Fearnley. I received your pathology results late last night. It's good news! Lymph nodes were clear. The tumor had pushed just outside the prostate but the margins are clear. Excellent news. Gleason score is 7. To repeat, the Lymph nodes are clear. Your grading is a Gleason 7. There was a small amount of extension however the way we modified the operation it is an absolutely clear margin. This is excellent news. Couldn't be any better. See you in 10 weeks to check your PSA. Your chance of a long term cure should be excellent."
Wow! May all my YANA friends receive such a great phone call. I hope the fact that it is April Fool's day is not relevant!
In 1975 I worked in an Ad agency in Sydney and we were helping the Cancer Council pro bono. A very clever copywriter called Roy Pond wrote them a slogan:
"Cancer is a word, not a sentence."
It is as true today as it was then. Take courage everyone who is on this challenging journey.
I hope my story helps you, just as your stories helped me.
I will update in 10 weeks with progress and hopefully a 0.1 PSA score.
It is now some months since my last update. On 16th April it was my first face to face meeting with the specialist since surgery and it was confirmed that the lymph nodes were clear, that the tumor had been significant and had pushed outside the prostate. Staging was T3a. Gleason score was 7. They took 9 lymph nodes out and went very wide on the right hand side. Only saved 20% of the nerves on that side and 50% on the left side. Likely extensive ED side effects and some issues with continence. Wounds healing well. Received the all clear to have my hip replaced, the operation that was meant to happen in February, prior to being diagnosed with PC.
To be back in hospital for three weeks again was a challenge and having a catheter inserted for a week certainly set me back a bit. Let's just say the four weeks that followed the hip operation were my most challenging to date. My friend, partner and wife Liz was a tower of strength. Thanks!
My next consultation was on the 8th of June and my first PSA result. I had been hoping for 0.01 however it came in at 0.028. Higher than I wanted but technically still "undetectable". ED still 100% but continence improving. I can actually get up from a chair and make it to the toilet in time - just! Still wearing Tena pants as this gives me more confidence.
Back again on the 16th August. PSA now 0.03. Not to worry I am told. Still undetectable by past measurement standards. Continence improving and I have changed to mid strength Tena pads. ED still 100% and the Viagra pills having no effect. Interestingly, and happily, I can still experience an orgasm and have achieved over a dozen since the operation. However now is the time to invest in a pump and try injections. Met with a specialist in this area and had a two hour consultation.
Also time to escape to Europe for six weeks and catch up with all the family, kids and grandkids, in Spain for a week. Wonderful! Feeling the best since the operation. Now wearing light Tena pads. I seem to pee after bike rides (yes the new hip is sore but functional), when tired and when I hear running water like a tap! It is getting better, however.
Next consultation is 23rd November. PSA has risen to 0.05. Should I be concerned? Too early to tell, I am told. The alarm bells go off at 0.1 then 0.2 when they tell me radiation should be considered. I had hoped to be clear of it by now. It could be that other proteins are still cross reacting and just a false alarm. Still, I worry about it. Hard not to. ED has not improved. The pump works, however is somewhat cumbersome and takes time. Injections hardly have any effect. Dose now up to 10 mg of Caverjet. Investigating creams such as Muse with Alprosadil but they don't seem to be available at present in Australia. We will persevere! Continence improving, then I get tired and it reverts back to being difficult. What with the Parkinson's, new hip, old knee infection and PC it is all a bit of a challenge. Doesn't help that I fell down three steps five weeks ago and bruised everything pretty extensively! Must be getting older. Plus my Hernia seems to be separating and protruding so I have to see another specialist about that. Apparently this happens with 30% of patients after a radical prostatectomy and may need an operation. Interesting!
My next PSA is March 2017, a year on from surgery and I will update YANA members with my progress.
I hope theses notes help others who are just starting out on their own journey. I continue to read your stories with great interest.
Finally, may I take this opportunity to wish you all a very merry Christmas from down under and a positive, and cancer free, 2017.
Trevor's e-mail address is: firstname.lastname@example.org