56 and struggling to choose a treatment

Hi Paul,

I'm sorry that you find yourself here.

I am 67, so considerably older than you.  Some of my experiences may not relate to your situation.

  I was diagnosed 12 months ago.    I had a PSA of 13 (so slightly higher than yours) and, after the biopsy, I was given an initial diagnosis of T2, with a Gleason score of 3+4.  I too was refused Brachytherapy.  I was offered Surgery or Radiotherapy with Hormone Therapy.  I might have had the Radiotherapy on its own but I  was worried about the side effects of the Hormone Therapy on my mood and libido.  They did not recommend Radiotherapy on its own, so I opted for Surgery in the end.

After removal of the prostate, the histology report indicated that my Gleason score was actually 4+3, with T3a, so the cancer was more aggressive than they first thought.  So, one advantage of the surgery is that you get a more accurate diagnosis than can be achieved with just a biopsy.

On the negative side, I experienced very severe incontininece for the first few months.  (I am told that my level of incontinence is very unusual).  I am now 11 months post-surgery and my continence has improved, but that still means I'm using 2-3 pads per day. 

As far a sexual functioning is concerned, I still have zero erectile functioning, even though my surgeon advised that they had saved "most" of my nerves on both sides.  I have been prescribed Cialis (Tadalafil) and a Vacuum Pump and Alprostadil injections.  I've reduced my use of the injections recently as I find them unreliable at low doses but give painful erections at higher doses.  (There is an alternative to Alprostadil injections, called Invicorp, which I am advised has few, if any, side effects and works just as well).

I don't know in which part of the country you are, but if you opt for Radiotherapy, that will usually entail daily visits to the hospital for the duration of treatment.  That can involve a lot of travel.  Given that you are self-employed and need to be at your bar, will that cause logistical problems?   The radiotherapy's adverse effects usually develop much more slowly, so one advantage is that you would have more time to adjust to any changes.

The surgery option usually involves just one night in hospital, although you will have a catheter for about a week or so and that can make mobilising a little more difficult [and you would probably be more conspicuous to your customers :-)].  Once the catheter is removed, you will feel a lot more comfortable.  If you are incontinent (and be assured, not everyone is), the incontinence pads are fairly inconspicuous and people won't know that you're wearing them.   But they're an inconvenience (and I find them humilating).  

Good luck with whatever you decide.

Best wishes,

JedSee.

Best wishes,

Chris

The answer is largely historical. Just about all hospitals that treat PCa have been doing it for many years, so have the equipment, experience and skills to do Prostatectomy and EBRT. The da Vinci Robot is expensive and requires additional training and expertise to operate it. Having invested so much in terms of human resources and expense, this has to be justified and Robotic seems to be becoming ever more in use. (Open surgery is still favoured by some surgeons or felt to be a better option in some cases). Results have been analysed over many years.

EBRT treatment has also been available for many years with ongoing refinements making it more reliable and effective. So in many cases upgrading EBRT remains the option most hospitals offer as an alternative to surgery. These two options offer treatment for most patients.

Brachytherapy (both high and low dose) is an addition an increasing number of hospitals offer. Then there are other forms of RT that are newer but many hospitals don't have the resources to offer. Focal Therapy is presently only available at very few hospitals. Some argue that it is experimental and requires additional cost and expertise and why should they become involved in this when either Surgery or EBRT or both will do the job. Then there is said to be a reluctance on the part of surgeons who have worked hard to do an intricate and demanding operation and would not would want to change to do Focal Therapy. There are only 2 NHS hospitals, The Christie in Manchester and UCHL in London that have Proton Beam as this is an expensive facility to install and operate. So, yes, treatment can vary quite considerably between hospitals.

Paul,

Some of your diagnosis is missing, such as staging (T2b, T3a, whatever). That's useful to know when suggesting what to think about treatments. You are not constrained to have just the treatments offered at your current hospital, you can ask to be referred to any other NHS hospital in England, although that may mean more traveling. However, hospitals don't tend to offer treatments they don't do, because they have no expert there to say you're suitable for that treatment.

Regarding focal therapy, it depends where the cancer is in your prostate. 11/19 cores if evenly distributed doesn't sound like focal disease, but the cores are probably concentrated in the lesion(s) (damaged tissue) shown up in the MRI scan, and it may be that outside of that, there wasn't any cancer found.

I'm not aware either of the proton beam systems is treating prostates, so that's probably not available in the UK. The results when it was (in different private hospitals) didn't seem to live up to expectations.

If you are interested in Brachytherapy, you do need to ask someone who does it. Consultants commenting on procedures they don't do is not always reliable advice.

I was 56 at diagnosis, and 57 when treated. I initially went in naively saying I wanted it out. However, in my case, they thought there wouldn't be any nerve sparing which concerned me, and they thought I had a significant chance of needing radiotherapy afterwards. (30% of prostatectomy patients need radiotherapy afterwards, but my chance was much higher than 30%.) So they recommended radiotherapy only (plus hormone therapy), without adding in the side effects of prostatectomy too. That was done 3½ years ago (same treatment as Barry), and I now almost wouldn't know anything had been done, and everything still works just like it did before (except dry orgasms, which I actually find quite convenient). There are no guarantees of course. I do have some minor painless rectal bleeding, but no incontinence and it has no impact on my quality of life, so I don't care about that.

In terms of how disabling the treatment was, I wasn't working anyway, but I cycled every day all the way through my external beam radiotherapy (which probably helped me avoid any fatigue and stay healthy on hormone therapy). The HDR Brachytherapy was 3 days after the external beam radiotherapy finished, and I would have taken perhaps 5 days off work for that (2 for brachy and 3 days afterwards just to be safe), but I was back doing a long cycle ride 5 days after the brachytherapy. In retrospect, I wouldn't change anything.

Hi Paul 

A traumatic time indeed.

I went the surgical route: Retzius sparing robotic assisted radical prostatectomy + neurosafe (Da Vinci Xi) at London Guys cancer centre in the trusty hands of the Prof Whocannotbenamedhere. Never looked back and fantastic outcome. My cancer was more extensive than first shown on 3T mri but caught just in time while localised. 

find a high volume surgeon with good stats is a good place to start. Check their data as high volume normally equates to >100 procedures a year. Think my prof was doing several times that so it gave me extra reassurance to have a experienced  pair of hand in such a critical area.

Hi PauL,

Sorry to hear about your diagnosis. As the Surgeon said to me when he saw me before the Op, ‘Ah, bummer’....I think because I am a young looking 52 yr old (apparently).

So I had Gleason 8 after biopsy with Seminal vesicles cancerous as well. After a PETSCAN one lymph node lit up. But not sure what it was at that time. 

after consultation with a surgeon and an oncologist, and their internal meetings everyone including oncologist said surgery best option.

Main reasons being: 

i am young, have an aggressive cancer (upgraded to 9 after surgery), and whilst only 50% of negative margins due to positioning of the tumour further treatment via HT and RT is easier after RARP. Apparently less easy the other way around. The lymph node was a side issue as it turned out as removed it in surgery and was negative.

am 3 weeks today post op. Occasional dribble incontinence, and going to start ED pills tomorrow.

i wanted the cancer out, rather than spend the rest of my life with PSA levels and reoccurrence plaguing me. Don’t get me wrong I may still end up with further treatment (and probably will TBH), but the ‘mother ship’ as the surgeon called it is gone.

psychologically for me that was important.

i will deal with the side effects.