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My Prostate story.

User
Posted 13 Jul 2019 at 12:20

55 Years old


March 2018 1st biopsy


PSA 5.8


Gleason 3 +3


Well, it's been 18 months since I was diagnosed with prostate cancer. It has been an amazing journey so far, from the initial knee jerk reaction of getting rid of it to accepting active surveillance.  The big thing for me was understanding what type of tumor I had and the best ways to deal with it.  There are so many options but there are up and downsides to all of them. 


As the year went by and I attended sessions with my Urologist / Oncologist things became clearer. The important thing for me was research.  I spoke to and read about a lot of people, people who had undergone various methods of treatment and why that was right for them, I read forums, I looked at clinical tests. I learned how everyone is different and the same shoe does not fit all!  I formed my own opinion on my situation and the best way to deal with it for me and my future.


56 Years old


March 2019 2nd biopsy


PSA 6.6


Gleason 3+4 


My Urologist told me it was time to act as the cancer was on the move. By this stage, I had decided treatment wasn't really an option for me as I wanted certainty. He also informed me that as the cancer was now on both sides of the prostate Brachytherapy and Focal therapy were now not an option and surgery was the best way to go. I opted for a Radical Robotic Prostatectomy. The date was set with a 2-month wait. He told me I would have a better outcome if I lost some weight and was as fit as possible as this makes a big difference with the surgery and the recovery.


I had a mixture of emotions but at the end of the day I knew it had to happen and I knew I would be able to move forward post op come what may.


July 2019


It was a Saturday morning when I checked into the hospital, feeling nervous yet resolute on what must happen. I was prepped and led into the anesthetist's room and lay down while they prepared me for a spinal. The next thing I knew I was in the same room expecting to be wheeled into the theatre however to my total surprise it was all done! I was wheeled back to my room where I got amazing attention from the nurses.  Considering what had just occurred I felt amazing, lucid and not too sore at all. This was of course due to the anesthetic and pain killers already in my system as I was to find out the next day!  I had the urinary catheter, a drain hose coming from my upper tummy and six bandages covering the entry points where the surgeon had directed the robot. The next day I was sore, full and full of wind but this was to be expected. Two days later, after monitoring and being taught how to use my new plumbing, I was sent home feeling not too bad.


After 7 days I was back at the hospital to have the catheter removed and tested to see if I can pee on my own. This I passed in all regards. I met with my Urologist who explained my pathologist report to me and told me he was confident he had got it all.


I now wait 6 weeks for the first post-surgery PSA test, which should read undetectable.


7 days later. In summary:


I am at home now one week after surgery, with no catheter, no bandages, no pain to speak of. Of course, I have to continue to strengthen my pelvic floor muscles, watch my diet and keep fit. Given a bit of time I expect a full recovery and to lead a normal life.  To this point, it has been a mixed journey full of emotion, fear, disappointment, and surprise.  I can't praise enough the level of care I have received, professional yet personal and caring, they have all done an amazing job. 


Talk to people. Do your research. Form your own opinion.


Post Opp update


5 weeks post-surgery PSA 0.02


27 Sept 2019


It's been two months since the operation. My recovery has been good however mixed. One very important thing I learned is you must really take it easy for the first six weeks, no bending, lifting, etc.  I felt so good initially I forgot about this and the lesson is you don't know you are overdoing it until you have overdone it and it really does hit you hard when you overdo it.  On the bright side, I am a completely dry day and night.  Daytime dryness came within 3 weeks of the catheter was removed and nighttime dryness a couple of weeks later.  I still get a bit tired and a lie down in the afternoon is always welcome.  All and all so far I feel pretty lucky.  Remember everyone is different so do your own research and form your own opinion.


If you have any questions about my story I would be delighted to hear from you.


 

Edited by member 28 Sep 2019 at 16:37  | Reason: Up Date

User
Posted 13 Jul 2019 at 13:54
Glad to hear your surgery went well and you are recovering nicely.
Best wishes going forward.

Ido4

User
Posted 13 Jul 2019 at 15:01

I absolutely endorse doing your own research and getting to know the disease, all treatment options, and side effects. I pretty much spent the 2 months at the start of diagnosis doing exclusively that. It helped having a science background, albeit non-medical, but also having quite a good understanding of many medical issues from looking after my parents over the years.


It significantly raises the level of discussion you can have with your consultants. I did comment once that they probably have a term for such patients being a bit of a pain, and both he and the Macmillan nurse present said absolutely not - they really like it when a patient is in a position to take informed control of their care. He discusses things like STAMPEDE and PIVOTALBoost trial arms with me, knowing that I will have read about them. As a result, my treatment is modeled around some of these trial arms. I also adjusted my treatment timing so I could get my PSA down to (almost) 0.1 prior to RT, having found 3 research papers showing this improves RT outcomes, and my consultant supported me in this.


I also keep an eye out for side effects. I quickly spotted that Zoladex was increasing my blood pressure and blood glucose levels, and could keep these under control. Also quickly spotted that Tamoxifen didn't get on too well with my liver, and switched to minimal dosing according to requirement.


This isn't for everyone, but if you have a science background or knowledge, then go for it.

Edited by member 13 Jul 2019 at 15:08  | Reason: Not specified

Show Most Thanked Posts
User
Posted 13 Jul 2019 at 13:54
Glad to hear your surgery went well and you are recovering nicely.
Best wishes going forward.

Ido4

User
Posted 13 Jul 2019 at 15:01

I absolutely endorse doing your own research and getting to know the disease, all treatment options, and side effects. I pretty much spent the 2 months at the start of diagnosis doing exclusively that. It helped having a science background, albeit non-medical, but also having quite a good understanding of many medical issues from looking after my parents over the years.


It significantly raises the level of discussion you can have with your consultants. I did comment once that they probably have a term for such patients being a bit of a pain, and both he and the Macmillan nurse present said absolutely not - they really like it when a patient is in a position to take informed control of their care. He discusses things like STAMPEDE and PIVOTALBoost trial arms with me, knowing that I will have read about them. As a result, my treatment is modeled around some of these trial arms. I also adjusted my treatment timing so I could get my PSA down to (almost) 0.1 prior to RT, having found 3 research papers showing this improves RT outcomes, and my consultant supported me in this.


I also keep an eye out for side effects. I quickly spotted that Zoladex was increasing my blood pressure and blood glucose levels, and could keep these under control. Also quickly spotted that Tamoxifen didn't get on too well with my liver, and switched to minimal dosing according to requirement.


This isn't for everyone, but if you have a science background or knowledge, then go for it.

Edited by member 13 Jul 2019 at 15:08  | Reason: Not specified

 
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