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.

Thank you.

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.

Hi, now just over 12 months since my radical prostatectomy via Da Vinci robot and surgeon. Latest PSA results would have once been classed undetectable but these days show a disturbing trend upwards; 0.03; 0.06; 0.09. The logical conclusion is it will reach 0.2 in about six to twelve months then I am advised that I will need to consider radiation treatment. I think waiting for the PSA results is almost as bad as knowing I have cancer. as so many contributors comment, it hangs over you like a sword.

I did need to have a hernia operation as the original sutures from my radical prostatectomy failed and a 5 cm tear appeared. Dr Tran performed this 3 hour operation at St Luke's hospital in Sydney Stitching it up and inserting a 12 cm x 15 cm mesh via keyhole surgery. It is now 7 weeks since the operation and although a success, I am still very tender and sore.

Incontinence has improved and I can now go through the night and last around 3 hours in the day, so manageable. ED is still an issue and I have given up on pills, injections and creams as they don't work for me and now rely on my pump. With the support and love of my darling wife that gets us through OK.

Time to appreciate the good things in life and smell the roses. Seeing a lot of our kids and grandkids recently, now off to Europe to visit our other daughter in London, travel in our VW camper in France and Spain and try to reduce stress as best we can by walking, swimming and cycling. It has been a challenging fifteen months with the prostate cancer, Parkinson's diagnosis, new hip, hernia and knee infection!

Onwards and upwards, that's what my old Dad used to say. He lived to be a hundred, so still hope yet.

My best wishes to all you brave YANA contributors. The world may be in political turmoil everywhere but as long as you wake up each day and see the sun shine, it can't all be bad.

I'll post again when, and if, I reach 0.2

It is now November 2017 and after a wonderful two months in Europe one returned to the real world with a bit of a thump. My PSA had doubled since my previous test and was now at 0.18, not far off the dreaded 0.20. I was referred to an oncologist, Dr Andrew Kneebone, at the Mater hospital and he recommended 34 treatments of radiation after having a hormone injection. He also did a nuclear scan that clearly showed areas of cancer in the prostate area and some lymph nodes. So treatment is now happening five days a week and I am currently into my third week. All is going well, so far, with my PSA down to 0.06 already and apart from the horrendous daily struggle to have an empty bowel and a full bladder, no other side effects apart from weariness in the afternoon after treatment. The journey continues to try and conquer this annoying cancer that seems to want to linger on and cause mischief. The great support of my wife and partner, Elizabeth, and from family and friends makes that journey so much easier to travel.

December 2017 . Treatment is completed. Seven weeks of radiation. First four weeks OK, last three weeks really tough with loss of control of both bowel and bladder. But hey, it is now two weeks later and things are beginning to improve! Even the side effects of two hormone injections are getting better. Has it worked? As always, one has to wait and see. A visit for Christmas from our London based daughter really helped cheer me up. And perhaps it was not the best time to sell our family home in Sydney of 37 years and buy a smaller house by the sea to be near to our other daughter and grandkids whilst daily treatment was going on. But you have to do what you have to do. No time like the present. definitely our last move. A happy New Year to all YANA members. I hope 2018 is a good year for you.

It is now exactly two years since my radical prostatectomy operation, and three months since the end of radiation treatment. And for the first time really good news. My PSA is undetectable at 0.01. Whether this is due to the on going effect of the two hormone injections or due to the fact they may have treated all the cancer cells we will not know for another six months. But if feels good!

Reality from my experience so far is as follows: having an operation was a good decision; chances are you will still need radiation afterwards; hormone injections help increase success rates from 60% up to 80% and you should have them; ED afterwards is hard to fight, it is as if someone has thrown a switch and all your desires just disappear, however I am assured it is reversible. I hope so. Incontinence is a constant companion and even with pelvic floor exercises you should get used to two hourly toilet visits. I do go through the night OK on occasions. The sound of running water is my enemy!

At this point of time I am feeling very positive. Another trip to Europe is beckoning, swimming, walking and cycling more, our son is getting married next week, loving being grandparents with another granddaughter on the way, wow! So much to live for. Good luck to everyone. Our journey continues. Don't forget to make a donation to this great YANA web site to keep it going.

I will report back to you in six months time.

Well, it is now six months since my last test and I am happy to report great progress. My PSA is still at 0.01, in effect undetectable. My testosterone levels have risen from 0.4 to 13, so that is no longer the reason for my low reading, and I must say I appreciate the return of my libido! I would be lying if I said it is all plain sailing in that area but now I have such a low PSA my state of mind is greatly improved. The 9 week trip to Europe was fantastic, catching up with friends and relatives, driving almost 5,000 miles in the VW camper and enjoying 8 weeks of glorious sunshine. On my return I had three lovely emails from work colleagues who I hadn't spoken to for ten years since I retired, saying they had read my YANA blog and wanted to offer their support. Thank you Maggie, John and Peter for taking the time to write. It was much appreciated. We will catch up for that coffee we talked about.

So the radiation treatment plus the radical prostatectomy seems to have worked. Hallelujah! Now all I have to worry about is the Parkinson's, but that seems to be OK for now.

Wishing you all similar success with your own Prostate journeys. Stay positive.

That's all for now. Best wishes. Trevor

Postscript. My apologies for the atrocious spelling of testosterone in my last entry! And on reflection I was perhaps little flippant regarding my ED. I know this a big issue for most of us and the reality is challenging. However I am glad to report some definite improvement thanks to retrying Pfizer Caverject 20 ug dose. Just thought I would mention it.

A Happy New Year to everyone. I just received my latest PSA and it is still at less than 0.01, effectively non-detectable. So that means the last three tests have remained at this level and perhaps, just perhaps, the cancer is no longer there. A great relief. As this is the case, I think I will make this my last blog entry for now. It has been wonderful to read other people's stories and they have been so helpful to me. I hope my own experience has given hope to those just starting their journey. There are still massive, life changing side effects, even now. I wear Tena pants full time as control diminishes when I exercise or hear the sound of running water. Sex is still great but now depends on a ten minute process beforehand using the pump. Both are entirely manageable with the support and love of my darling Liz. The after-affects of the operation, radiation treatment and hormone injections seem to have passed and life is back to more normal. My Parkinson's disease remains under control and I swim, walk, play table tennis and cycle. Another trip to Europe to see our middle daughter in London is planned for this year, travelling in our little camper van. We are comfortably settled in the new house on the South coast of NSW near our daughter and three grandkids, with regular visits to Sydney to see our son and his new baby daughter. Life goes on and I am indeed lucky with these outcomes.

My best wishes to you all for your own good outcomes. Remember, "Cancer is a word, not a sentence." And don't forget to donate to keep this excellent site going!

Best wishes

Trevor

Another PSA test before heading off to Europe again. I must be feeling confident as the results will come in whilst I am away. Great travels with Liz and catch ups with family and friends. I still seem to cope OK with the travel and driving a couple of thousand kilometres around France, even if our return flight took 36 hours with an unscheduled 12 hour stop in Singapore, all our bags lost and a 4 hour delay for our connecting flight to the south coast! Flying used to be much simpler. However the pleasure in opening the post and discovering my PSA was below 0.01 for the fourth time in a row was immense. As the report says "undetectable". Elizabeth is pretty happy too! So, my fellow YANA contributors, please keep believing your cancer can be cured. For how long, who knows. But if sure feels good!

Good news and bad news. The good news is that my PSA is less than 0.01, undetectable. However I am now experiencing the side effects of 7 weeks of radiation treatment in two forms. The first is bleeding from the bowel. A colonoscopy has fortnately found no bowel cancer however a burn area from the radiation treatment that refuses to heal. The second side effect is the onset of osteoporosis resulting from a stress fracture of my sacrum ala in my back when exercising and lifting things. MRI, CT and Nuclear scans found no cancer in my bones, thank goodness, however the back specialist believes the osteoporosis is as a result of the radiation treatment weakening the structure of my back. Walking with a stick helps my movement somewhat.

On a more positive note our family recently evacuated from the terrible bush fires on the south coast of Australia without loss of property or injury, so that is a great outcome. Many Australians have lost their homes and some their lives and we are trying to help by having evacuated families stay at our home on the coast while we have been staying in Sydney sharing our small apartment with our daughter, her partner, their three children, two cats and dog! Recent rain has now allowed them to return back after three weeks away from their home. The journey of life continues.

Wishing all YANA members a safe and healthier 2020.

What a difference 6 months make. No one had heard of Covid 19 when I last wrote my last post. All our lives have been turned upside down and we have cancelled trips to Japan and Europe and self isolated. I hope all the YANA community is safe and well apart from your journey with Prostate cancer. In my own case I am happy to report a PSA of less than 0.01 from my July test which is great news. The bleeding still continues from the radiation burn but I can cope with that. My Parkinson's progresses but not too fast. Will any of us be able to escape from isolation in 2021? I sincerely hope so! As an optimist I am about to book our next trip to Europe for May 2021. Keeping my fingers crossed someone discovers a vaccine for Coronavirus by then and all will be well. Stay safe yourselves. And all the best with your own Prostate treatment. Life goes on, perhaps in a simpler form and at a slower pace that allows us to appreciate everything that we once took for granted. Cheers!

Much time has passed since my last report and I still have a PSA that is undetectable. However side effects from the radiation have taken their toll. My pelvis is greatly weaker and as a result I have had three stress fractures of my pelvis in recent times. Recovery is slow and I was in hospital for a total of nine weeks. Much improved now. In hindsight I would only have had four weeks of radiation treatment rather than seven to try and limit the after effect of destroying the bones in my back and spine. I need a walker now to get around. Apart from that, and dodging the Covid bullet, life is good.

Nothing new to report. All going well. Doing daily exercise routine at home that really helps. Walking as much as possible, albeit with a walking stick. Upped my Parkinson's medication which has helped me with balance and movement. Pretty happy seven years on From being diagnosed with Prostrate Cancer. We managed a short trip to UK last year and a recent week long trip to QLD. So life in the old boy yet!

Some recent developments. Blood in my urine. Plus a PSA of 0.16 . Time to see the good doctor Raji Kooner again. His sound advice was it is time for a CT scan, some urine parhology tests and a cystoscopy in St Vincent's Private. I am booked in for Monday week and will report back progress.
All the best to YANA members wherever you are.

Received the results from Dr Kooner. Nothing to worry about. Blood in the urine identified as a result of radiation burns in the bladder. Increase in PSA needs to be watched but no concern at present. Blood in the bowel again due to radiation burns. Just have to live with them.

It is my eight year anniversary since diagnosis coming up in January. Can't complain too much although I now have an infection in my pelvis due to coming off lifelong antibiotics for a break. Need to identify the new bug which is in hand with PET scans and aspiration. So back onto antibiotics again soon. This time for keeps!

Happy Christmas to other YANA readers. Ours is a long journey. But remember, you are not alone.
All The best

Trevor

G'day again. Not quite going to plan unfortunately. My PSA has jumped from 0.36 to 3.4 in six weeks. It's back! And time to take some action. Nuclear scan confirms cancer has returned to the lymph node of the sacrum area. Started hormone therapy on December 13th with two injections of Firmagon going to one injection in a month's time. Then for three months with possibly Darolutomide tablets to supplement the treatment. Dr Kooner would prefer me to have more radiation treatment bit I am resisting due to issues with my back from the last treatment , my incontenence and memories of my reaction to long radiation previousl. So I am trying hormone treatment first to get this thing quickly under control and reduce my PSA. After six months of intermittent ADT treatment will review again. So my journey takes a new course. More updates in the New Year. Happy Christmas to all YANA contributors. Hope my updates help with you own journey. I am so lucky to have such a supportive partner in Liz. Don't know what I would do without her. Thanks Darling.

PS don't forget to make a donation to keep YANA going.

Trevor's e-mail address is: fearnley AT bigpond.net.au (replace "AT" with "@")