Nearly four weeks on

Hi berhe 

I found it a really hard decision.  It seems in most other major health issues there is basically just one option. In this case, it seemed to me to be a choice between which side effects I felt best able to deal with.  I opted for surgery - incontinence and ED seems to go with either option, so for me it came down to avoiding the challenges of hot flushes, weight gain and mood swings that often come with RT, with the big psychological plus that, at least for me, surgery means the cancerous organs has been removed. Fingers crossed.

Check out my bio for a bit more detail on my surgery journey.  The surgery was uneventful and the whole NHS team were great.  I should have realised that if a surgeon is going to pop some holes in my abdomen and have a rummage inside, then my stomach muscles are going to hurt after surgery.  No one actually mentioned that to me and when I tried to blow my nose for the first time my eyes nearly popped out of my head as a result of the pain.

I had a bit of shoulder pain for a few days, but that was manageable and soon passed

Catheter removal was painless, albeit the sensation of it being pulled out was a bit weird.  The whole process took 5 seconds.

The only issue for me has been some internal bleeding which formed a haematoma across my right hand side.  That was painful.  I ended up back at the hospital for some tests and scans to ensure the bleeding had stopped and was given antibiotics.  It's still there, but subsiding, however it has meant I've had to steer clear of my tummy as an injection zone for the anti clotting injection.  I've been injecting into my thigh.  

It's a deeply personal choice but hopefully my experience helps crystallise things for you.  Which ever route you pick, good luck.

Thank you for sharing your experience; it’s one of the best I’ve heard so far. I’ve been considering a similar path for treatment. The difference between radiation combined with hormones and surgery seems quite subtle. The side effects concerning erectile dysfunction and incontinence need to be weighed both in the short and long term. In the short term, radiation may be better, but in the long term, the disadvantages of radiation and hormone therapy — such as the many other side effects like hot flashes, sweating, and more — become more apparent, making them potentially more challenging. Given these factors, I think surgery might be the better choice for me.

Thanks for your message, apologies for the slight delay in replying. As others have said, I simply wanted to get rid and do things this way round, so if needs be at a later date, we can move to radiotherapy. The team at my local hospital were fantastic all the way through and I can only say that have done my research, things went as expected. As to immediate challenges, I didn't get a wink of sleep on what the staff described as a noisy night on the ward for my overnight stay . I'm 71, so elderly persons ward, some sad and amusing experiences. The staff were caring and compassionate, I take my hat off to them for all they went through. I think they were glad to have me to chat to! The food was excellent. It was snowing on the day of discharge and my wife ended up looking like a sherpa with my bags and two carrier bags of medicine. For the first 24 hrs, I found the catheter awkward, especially to walk in, but the overnight bag and the ability to sleep was welcome. It was simply a case of every day was one day less to have it in. Removal was easy, short and a feeling of pull through than pain. I started to pee quite liberally in a short space of time. Things have settled down a bit, from an hourly pee at night to only two or three since midnight, the same pre the operation. Quite frankly, we found it a darned sight easier to put a bucket on a car rubber mat next to the bed! I'm dry overnight and at home, but it is presently a right nuisance going on walking with, it seems, a squirt every pace, so a sodden pad on a half mile walk to and from the paper shop is the order of the day. I do hope this improves with time as I so enjoy walking in the country. We have a holiday to Greece in the Summer and I'm already thinking about constructing some form of internal sporran to put under my shorts! For the first couple of weeks, I felt really lethargic and just couldn't motivate myself, my get up and go had got up and gone, although that's now past me in the main. I also suffered from acid reflux that started on the ward, immediately post surgery. I only had to take a couple of the potions to get my bowels back to normal, but some days, things are rather looser than I would like. I'm now more or less teetotal, but have had a glass of wine at the weekend without any noticeable problem. Whatever you decide, I wish you all the best. R

Berhe,

It was bit strange my decision for surgery.  I was PSA 4.5, Gleesan 3+4, T2, and it seemed to be low to medium risk.  Only 2 of the 21 biopsy samples confirmed cancer. At my appointment to unveil my biopsy results, the special nurse confirmed the above and that my options were Active surveillence, Prostatectomy or Radiotheraphy.  She tried to open my MRI scan to show me but it wouldn't open.  I didn't think there would be an issue!  So it was a case of AS but if we wanted to speak with the surgeon or the oncologist then I could do.  I thought I might as well speak to them so that if in a few years the AS indicated that I required the next stage of treatments then I would be better informed have a decision made already.  I actually felt that there were too many options and it was patient choice but I just wanted a mdicially traine expert to tell me what to do.

My brother had a LARP four years earlier and he kept telling me to get on with it, to remove the cancer now.  He was about 70 when he got it done and has recovered very well.

A few week later we met with the surgeon.  He said that he had difficulty opening my MRI scan but he perserved and finally opened them on the computer.  He looked at them and told my wife and I, this is not active surveillence!  I need to treatment as soon as possible.  In his letter after the appointment he put me down as T3a instead of T2.  He was the same surgeon who operated on my brother, so I decided just go for the surgery and cancelled the oncology apppointment.

The other guys have mentioned the pros and cons of surgery or radiotherapy.  I am 60 years old and reasonable active with no other health issues.

In some publications it advises you to ask the surgeon how many they have done and their success rate.  I just went on the fact that the surgeon had successfully operated on my brother's and the surgeoen does several LARP every week.  It helps if the surgeon is very familar with the procedure.  Looking at available information, it is also a common and relatively routine operation and the robotic assisted reduces the risk somewhat.

My surgeon appointment was mid November and I was offered a date just before Christmas but turned it down and so went in on 4th Jan.  Just over 5 weeks now.  Each person has different experiences of post op.  I had my catherter in for 16 days because of an issue with the join between the bladder and uretha pipe, so they wanted to make sure it was fully healed.  Personally the catherter was the most sensitive area.  My general pain is reducing day by day.  Today for example, there has been another incremental reduction, that I feel only slight tenderness but the occasional spasms in pelveic floor area have almost gone.  I seem to have more issue with indigestion, which made me try to poo often, that didn't help my piles! So most of my pain was there.  The polo mint cushion helps there.

I was lucky with incontinence.  I was pretty much ok straight from removal of catheter.  The only thing I find is that during night time I have that pain in my bladder signalling that I must get up to go to pee, but instead of a pint of urine only a small shot glass of wee turns up.  It is getting better holding my urge to wee to comfortably 2 hours or more.

ED, no reaction yet but I am not in a rush.  if it comes back, great, if not so be it.  

I hope this helps.  It is just my own personal experience to add to the mix.  As someone stated earlier, with surgery first, there is still the option of radiotherapy, but more difficult the other way round.

If I had a choice again based on my experince, I would happily choose LARP.  Hope you make your decision.

Very interesting, not least because my status is very similar to yours at the point of selecting your treatment path, so thanks for sharing. 

Did you receive a (provisional) staging after the MRI and then a second ('final') staging after the biopsy, or only a staging (later corrected) after the biopsy?

Did you ever get an insight into what caused the need for correction?  

Hello Peroni 

I hope you don't mind me sticking my oar in here - but I am one of those who has had their diagnosis amended:

28/11/21 - Biopsy 8 cores Gleason 7 (4+3).

05//11/22 - "Chips" from TURP operation Gleason 9 (5+4).

I wasn't enamoured in being "promoted" to the "Gleason 9" club but at least I know. This is one reason I don't like AS as in my personal situation things changed so quickly. (the full story is on my profile).

Best wishes and good luck - Brian.

So basically, the staging was after my biopsy as T2, N0, MX.  Obviously this was all new to me and I half expected to go to the appointment to have it declared it was non-cancerous and I just has an enlarged prostate because my readings were so low.  But that wasn't the case.  I mentioned above the issue that the nurse couldn't open the computer file with my MRI scan to show me it.  

So weeks later during my appointment with the surgeon to check out LARP, he also couldn't open the MRI file initially.  Then he did manage to and good job he did.  He reviewed it and using his experience and being face to face with me (as opposed to whoever reviewed my details after the biopsy), he had a worried face.  Key to it was I am a small guy so my prostate is 21cc.  So a 8mm lesion is proportionately significant.  Also he could not see a clear 1mm separation at my prostate fascia.  So it may have spread.  I can only think now a sliding doors moment.  What if I just remained on AS for a few years.  If it weren't for my curiosity to find out what the LARP was about for future information.

So I looked at my post appointment letter and noticed that the staging was updated to T2 ?/ T3a.  The latter T3a, is never an AS option.  Also on the side with the cancer it is next to my nerves and so the surgeon said he would make a deciosn during the op as to whether he could save these.   I will be meeting the surgeon in a couple of weeks.  I will be interested to know has it spread and whether I need other scans (I have only had MRI), as initially I was only T2.

I wish you good luck

Thank you for sharing, a very useful experience