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My story of prostate cancer RPJ

Posted 27 Feb 2019 at 21:11

My name is Rob and on 5th September 2018 my wife and I received the news nobody wants....at the age of 58 I was diagnosed with high grade Prostate Cancer ...... our world fell apart .
This is my story and I do hope it helps somebody that is starting this journey.

After being treated for enlarged prostate for three years it became apparent that there was something else wrong so after more PSA tests, the gleason score was 4+5 with a PSA 6.9 T2a disease. I underwent an MRI scan which showed a shadow and then had an internal investigative procedure followed by biopsies being taken. The biopsies showed there was a Tumour on the outside of the prostate.

We then had to wait for a Bone scan which would show if the cancer had spread any further. I managed to speed this up by taking a cancellation and thankfully we were lucky that the result from this was all clear.

At this stage a date was set for a robotic removal of the whole prostate and any surrounding lymph nodes. I was immediately put on a drug that we were told would effectively park the cancer and also started on a hormone injection every three months. The side effects were constant headaches (I felt like I had a hangover.....without the pleasure of having enjoyed a drink) also hot flushes.

On 28th December 2018 at Southmead Hospital I underwent surgery to remove my prostate as well as surrounding lymph nodes. This was carried out by a fantastic surgeon and his team.

This only entailed an overnight stay and on Saturday 29th December I was discharged and we made our agonising hour and half journey home, catheter and all.

Looking back we weren't given much information on discharge but we learnt to deal with whatever was thrown at us..... I say us, because my wonderful wife was going through it with me step by step .
All was going well at home, if wasn't pleasant but I was managing the whole catheter situation. Off our own initiative we had planned for any accidents and had purchased liners for chairs and beds and a catheter stand for night time.

But on Monday, 31 December (yes, New Year's Eve) all went a but pear shaped to say the least. My genitals swelled to extortionate proportions! When I say "swell" I mean to the size of a cantaloupe melon. On New Year's Day, after a call to 111, we found ourselves on the way to an out of hours doctor.
This was an excruciating journey but once there the doctor checked me out and also made a call to Southmead hospital when he was informed that although this was not a normal situation it 'can happen'. If only we had been warned of this possible eventuality we may not have felt so panicked and vulnerable.
For anyone that should experience this type of reaction try using ice packs, ibuprofen to reduce the swelling and support with the help of compression shorts or two pairs of briefs / underpants, not boxers .
This continued for two weeks but then gradually day by day started to reduce.

The catheter was removed 10 days later without any problems. The removal process is not as bad as you would think it was over in seconds, the nurse was fantastic and made the whole procedure a walk in the park .
We are now into week 8 after the operation and all is going good. I am walking one and a half miles per day and have been back at work 3 days a week for the last 3weeks also been driving for 50 minutes each way without a toilet stop .
The pelvic floor exercise two months before the operation certainly helped control the need to use a toilet, I am up every 2 hrs overnight but dry and wearing pads during the day for security. Tenna men are the best product so far .
The only ongoing condition we are left with is lymphoedema which is caused by the removal of lymp nodes which fight infection and clear water retention, so for example i had 12 removed on the left hand side and 6 on the right , so it is required to where a support stocking on the left leg to reduce the swelling and drive all issues to the underarm lymp nodes to deal with .
A small price to pay I think you will agree.
With best wishes to all .Rob & Mandy .
Ps you can get a toilet card from prostate uk I have found this helpful when needing the toilet quickly. On a recent shopping trip when the main toilet was closed in Tesco supermarket they allowed me to use the staff facilities and you are entitled to apply for a key for radar toilets which I have to say are normally in a better condition than normal public toilets.

Sent from my iPad

Edited by moderator 27 Feb 2019 at 22:05  | Reason: Not specified

Posted 28 Feb 2019 at 08:11

Hi Rob and welcome to the site. You might want to consider whether using your full name is a good idea on a public site.

Thanks for sharing your experiences as this is always helpful for others who are about to undergo a similar treatment or who may be experiencing similar issues. It sounds as though you are both coping well post op getting on with rebuilding your lives. 

Like you, I had reason to be grateful for the card and the Radar key so they are good points to raise.

It is great that you both appear to be very positive about things and it will be interesting to keep up with your progress.

Kind regards


Posted 28 Feb 2019 at 11:58
You can buy a Radar key on eBay, (like everything else), no disability required.....

Cheers, John.

Posted 28 Feb 2019 at 12:44

Originally Posted by: Online Community Member
You can buy a Radar key on eBay, (like everything else), no disability required.....

Cheers, John.


Thanks for the info John, I was recently "bursting" and the main toilet was "being cleaned by a female attendant" and locked, the disabled toilet was also locked, so I used the Ladies and had a couple of hard looks!  Radar key ordered :-)


Gleason 6 = 3+3 PSA 8.8 P. volume 48 cc Left Cores 3/3, Volume = 20% PSA 10.8 Feb '19 PSA 1.2

Jan '20 PSA 0.3 July '20 0.1

Posted 28 Feb 2019 at 14:18

Great write up Rob, sounds positive.  Can't say I've heard of the swelling before and was unaware of the toilet card, although I won't be using it unless things go bad.   

You must be due your post op assessment and psa test, normally around 8 weeks after the op.   All the best. Peter

Posted 28 Feb 2019 at 15:41

Hi Peter,

Thanks  for you message  ,due for my post op assessement 15th April ,its been put back twice so far but i always think that somebody else needs the slot more than me I am one of the lucky ones ,

Kind regards Rob

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