8 year journey - so far.

So this is my own personal account of prostate cancer, how it developed, its treatment and afterwards – still work in progress. I feel it may be nothing exceptional and somewhat mundane – but it is an up-to-date statement of what's going on, the process and procedures and may be helpful to some.

I am one of four brothers, currently aged A,63, B, 61, C, 59, D, 54. We have all been diagnosed with prostate cancer, and now have all been treated, by brachytherapy, radiotherapy, robotic radical prostatectomy, and open radical prostatectomy, respectively. Yes, we have always done things differently and in our own way.

Diagnosis first occurred with an 'accidental' blood test to brother B then aged 52. He rapidly moved on to have radiotherapy and was advised to inform his brothers to have blood tests.

I am brother C and had a psa blood test aged 51 in 2010, psa was 4; I had a low level non-agressive, localised prostate cancer. Gleason 3+3 found I think in only 3 cores of the biopsy. December 2017 biopsy was pretty much identical, but psa 11.

Possible treatment options were offered and explained to me and my wife. At the time both my wife and I were smokers. In my first consultation the Consultant said smoking would kill me before prostate cancer did. Clever chap, psychological warfare as an opening gambit – it worked because neither of us have smoked for over 7 years. It did, however, make me think that pc was not such a big deal. (Mistake, though some medics evidently believe it is over diagnosed).

Based on this – the fact that I was relatively young, healthy, fit, active in sports, and had plenty of time to consider treatment, and side effects of various treatments – I opted for active surveillance.

So the years passed by, but with each biopsy in particular, the emotional stress, worry, physical effects of biopsy, and uncertainty seemed to grow. Semen coming out in various shades of colour from red to brown is a definite passion killer and wtf moment, and lasts for several weeks. Though I showed no serious symptoms of cancer, I did find I was going to the toilet more often, and occasionally more urgently, but many of you know this can be just one of the side effects of getting older anyway, and may not usually be indicative of anything more serious.

Biopsies – I have now had 4 – leave their mark, psychologically. One of them though did not even find any traces of cancer.

Yet my psa level has increased from 4 in 2010, to 14 in 2015, and a decrease to 11 in december 2017.

3 MRIs over the years have shown 'nothing of concern'.

With my biopsy result in november 2017 showing no real change I told my consultant I had had enough of active surveillance and I would like to consider removing the prostate if that was still an option. Particularly as my younger brother had a prostatectomy 2 years ago and pathology showed his cancer to be far more advanced and aggressive then the biopsy had indicated. His psa incidentally was lower than mine, with gleason 6.

The Consultant was supportive, discussed other options to make sure I had thought about them, but I had already made up my mind. He said it may be around 6 weeks until the op.

He has done about 250 operations of this type - robotic radical prostatectomy by da vinci robot, and exudes confidence and ability, not overconfident and not slimy with it.

I had an appointment with a urology/macmillan nurse early december. She explained the operation, possible side effects and after effects, about stockings, about catheter, and pelvic floorexercises PFE. I immediately started PFE and continued up to day of operation.

Do not do PFE whilst catheter is in situ.

My pre-op appointment was in mid december. Various forms filled and signed, urine test, ECG, blood test (further one taken one week before op).

From 9 years ago, everything has been explained to a good level. I have had on-going PSA tests, DREs, MRIs, and biopsies.

On 29thDecember I had a phone call asking if I could have the op on 4thJanuary 2018. Agreed.

Operation carried out on 4thJanuary, when tens of thousands of other operations in the NHS had been cancelled due to the winter crisis in A&E.

Day of operation. Weight and height checked. Size of calf for stockings.

Quick Enema done – about 30 seconds. I hardly knew it was being done.

BP taken. Change in to hospital gown.

Details and procedure checked with consultant and anaesthetist.

Forms signed saying this and that and agreeing to death as one possible outcome, most unlikely.

Name, address, hospital no. checked multiple times over the 2 days in hospital.

Walked to OR.

Lay on bed, connected up to machinery – bp, pulse, O2 uptake, etc.

Another form signed, for what I cannot remember.

Legs in stirrup type thing, spread apart.

Cannula inserted into wrist, both in my case as first was not done very well.

Anaesthetic applied zzzzzzz.

Four hours later woke up in post op room. About 1.30pm.

Abdomen sore. Felt a little sick. Medication given for sickness.

Catheter and drain bag already in place.

Cup of tea and water taken.

2 hours later wheeled up to ward.

Spent rest of evening in bed. Had intravenous paracetamol.

Ate half sandwich, and biscuits, drank tea.

Can only lie on back as very wary of catheter at this juncture and

is painful to bend when moving position.

Woke up 2.00 am, slight abdominal pain. Had liquid morphine

squirted in to mouth.

Had breakfast of toast and tea.

Got out of bed and sat in chair. Is still difficult to bend and

move around. Consultant came round and said op went very well.

Prostate was larger than he thought, so wounds are bigger, and so catheter will

will not be in for one week, but for 18 days to allow more time for healing.

Abdomen very sore.

Lunch of jacket potato.

Able to walk around, slowly, delicately, holding drainage bag.

Am shown how to use catheter and night bag and empty it.

Discharged at about 5.00pm.

Hadn't even left ward when I feel wetness in trousers. We bought 2 pairs

of tracksuit bottoms XL, from Sports direct. Just the job and a bargain

at £15 for the two.

Returned to ward and had bag and 'tie' refixed. Wetness from leakage

around catheter tip (called bypassing). No concern.

Home about 6.30pm.

Ibuprofen 3 times per day for 10 days.

Senna, 2 pills in evening for 14 days.

Lactulose, 3 spoons in morning.

Enoxaparin injection once in evening for 28 days.

Codeine and paracetamol – as and when required. (Taken 3-4 times

in first week only).

Stomach pains twice in first week but only temporary.

Bowel movements – no problem. Penis tip stinging when leakage

occurs.

Leakage around catheter, especially when having bowel movements,

consists of a few drips, and consequent stinging.

Blood in urine only once – 5 days after op and blood in urine very slight only

in leakage urine. One or two blood 'clots' in drainage bag.

One week after op: Still sore around incisions. I move slowly to avoid pain.

Catheter seems good. Have been walking in house and garden only. Slight leakages when having

bowel movement. Tip of penis slightly sore, stinging, but not as bad as it was.

Able to walk around slowly, make up fire, make drinks, get wood from store,

put bin out and bring back. I.e. light stuff only. No sudden movements.

Food – I have not felt like having major meals but appetite has not been an issue. I have

eaten easy food, stuff that is soft, not a lot of chewing needed, my wife calls it nursery food.

Cold soft drinks seem to taste better than ever and go down really well.

Day 13. Have had a couple of bad(ish) days – i.e. not feeling generally well, nothing specific,

just tired and fragile and not up to much movement.

Showered from day 3. Just had strip washes until then.

Bathing from day 5. Make sure you remove all straps. Bathing is a real luxury but takes twice as long as normal.

Walking in garden each day. Have had one 15 minute walk, and one 25 minute walk on day 8 – probably overdid this. Felt tired and poorly afterwards.

Tip of penis has been quite sore with a greenish yellow discharge and bypassing (urine leaking around the catheter). 1 or 2 bits of blood through catheter. Phoned the hospital urology ward about this, they said not to worry, take medication if painful, let them know if it gets too bad, otherwise wait for catheter to be removed – another 7 days!

Bypassing (leakage around the catheter) still ocurring and stings when it does occur which is mostly during bowel movement. Again hospital said not to be concerned with this.

Wounds are healing nicely, I am gaining in movement and flexibility.

Stomach area looks like a war zone with scars and bruises – from incisions and nightly injections, but is all actually healing very well.

Scabs now beginning to fall off the incision locations. Clothes sometimes catch

on the scabs – ouch!

Day 15. Stinging and discomfort from the catheter now getting worse. Is very uncomfortable. Is disturbing sleep and making walking around and getting up/down from chair painful. From PCUK website some people use and/or were prescribed instillagel, an antiseptic/ gel. SWMBO is going out to get some. Have started to reuse codeine and paracetamol twice a day.

Tried instillagel, and yes it is a gel, which gives some instant relief from irritation, caused by the catheter at tip of penis, making moving around a lot more comfortable Also less stinging when going to toilet caused by bypassing. Instillagel comes in a syringe and I just use a small amount to, I suppose, anaesthetise the area. I guess other brands are available?

Day 16. Had a glass of coffee liqueur in the evening – first alcohol. Slept pretty well.

I don't drink very much alcohol usually, but now do not feel inclined to have any wine, gin, beer, as I feel it would probably inhibit the healing processes. More importantly, I don't feel any urge to have any anyway.

Day 17. I can now sleep in pretty much any position, bearing in mind the catheter extension has to still reach to the bag and bowl on the floor towards end of bed. I position the night bag in a bowl just in case of any leakages. There have not been any. Wounds are healing very nicely and I can bend down to pick things up off the floor. Can also stretch high, and stretch out legs without straining the healing wounds. Scabs have come off 2 or 3 of the wound sites.

Bypassing suddenly seems less, so leakage and stinging has improved a lot.

I am still very inactive compared to previously. A lot of reading and sitting around doing not a lot. Getting out of a chair still requires care – I think I am probably being over cautious.

I still take nightly enoxaparin injections in to the lower abdomen. Still another 10 of these to go.

I still wear the surgical stockings 24/7. I continue to take the Senna tablets in the evening (we bought an extra packet from the chemist), and lactulose in the mornings – a good thing if you take codeine. And I really do not want to be straining to have a bowel movement, something which was stressed to me by one of the pre-op nurses.

Day 18. Catheter removed at hospital. Takes about 3 seconds, some discomfort, not real pain.

Then put continence pad on under underpants. (Various types of pad available from chemists, from quite slim fit under 'Y' fronts, to night time nappy type).

Drink 1 litre of water and wee an hour later into a big cone shaped urinal which measures volume and rate of flow. 1stresult was good.

Then drink 500ml of water and again weed into cone about half hour later. Again volume and rate were good.

Bladder then checked by a scan device (ultrasound?), and 30ml remained in there. They are 'happy' if less than 100ml remains in bladder, showing that bladder has properly emptied.

Went home, blood evident in urine but getting less so. Some leakage but really quite marginal.

Leakage happens mostly when getting up and down from chair.

Day 19. Had a good night wearing nappy type pad, but was pretty dry, Some small amount of leakage. Got up 3 times to go to loo though. Some stinging and some very small amount of blood in urine. Feels like a very small amount of leakage during the day.

Have started re-doing pelvic floor exercises.

Will start going for daily walk today. Hopefully will start putting and chipping

at golf club within 2-3 days. Cycling and squash in a few weeks.

Will start driving in 2-3 days (do check with your insurance company).

Consultants appointment with pathology is in 3 weeks time.

After that, follow-ups for a few years I guess.

My family, wife and children, have all known and been involved since the first diagnosis. Now that an op has been done, I think all round there has been immense relief. It's all very well living with cancer yourself, but there are consequences for those around you as well. They also have to live with it.

Top tips: Read about PC as much as you can, bearing in mind each of us is different and bound to have different reactions and experiences. Take nothing as gospel, take nothing for granted. But this site, PCUK, is the only one I have trusted, has loads of useful info. about what to expect, what is common, options available and so on.

I do hope somebody finds this informative and helpful.

Day 87. Minor leakage is my only issue. And only during the day. This usually happens when bending over e.g. to pick something up, but is controlled by a pad (I use one per day). It is getting better, but it is a slow process.

I do Kegler exercises 4 - 5 times per day, play golf, walk when I often used to drive, and cycle.

Going to loo thrice a night, and needing to go urgently now a thing of the past.

Psa level = 0.

Result.

Edited by member 02 Apr 2018 at 19:35  | Reason: Not specified