Good news and bad news.

I understand you and I've been there, I was diagnosed with localized cancer and at fairly low risk in 2018 at 47 years old. It is a very difficult decision to make because there are possible effects, it directly affects our penis, organ to urinate, reproductive and pleasure.

In my case, the surgery scared me a little too because it was necessary to remove "everything", not just the part of the diseased prostate, the entire gland, and in addition the seminal vesicles and the vas deferens. As for the radiotherapy, what discouraged me are the effects of fatigue but especially that one cannot have surgery if it does not work afterwards. Because of my age, surgery was the best solution and that's what I chose.

I had a robot assisted radical prostatectomy with preservation of the erectile nerves and I am very very satisfied. The cancer was completely eliminated in the first place, then the urinary incontinence was very short and it's perfect today and I hardly realize that I no longer have a prostate.

For sexuality, the erections I would say it took me a few months, at about 6 months they were exactly like before the surgery and my penis is just as sensitive. The big difference is that without prostate and seminal vesicles there is no more ejaculation, My orgasms are there with the sensations but there is no semen coming out of my penis and it will not come back. For the rest, it's going very well

Thanks for the replies. I’m coming around to the fact that surgery seems more commonly offered to younger men, (Steve, thanks for your input) but I’ve not come across success or survival rates although I understand it’s a complex subject with a lot of variables. 
I was researching the side effects of RT this morning which didn’t sound great to be honest and the subsequent difficulty of treating any secondary cancers further down the line, then audiman (thanks for your reply) talks about proton beam therapy which sounds like a positive experience (if that’s possible), I think I need to do some more reading up and consider an appointment with an oncologist. 

Steve.

Until recently there have been very few proton beam machines in the UK. To me the technology sounds excellent. I assumed that they hadn't been used much for prostate cancer because they were too busy being used for the cancers which massively benefit from there use sush as eye cancer, and there wasn't enough time on the machine for the cancers which would only benefit a little bit more from there use. These are just my opinions I have no facts to back any of this up. 

https://prostatecanceruk.org/about-us/projects-and-policies/proton-beam-therapy 

- % likelihood of recurrence at 5 year point

- % likelihood of remission (no evidence of disease) at 10 year point

- % chance of still being here in 10 years

The difference tends to be in side effects so the challenge is in working out a) which treatment gives you the best chance of achieving remission b) whether you can live with the potential and known risks of that treatment and c) if you can't, working out which treatment side effects you can live with that still give you a decent chance of remission.

Known side effects of prostate cancer treatment:

- dry orgasm - all treatments

- infertility - all treatments

- penile shrinkage - very common whichever treatment

- ED - very common whichever treatment - generally with surgery it gets better over time, generally with RT / brachy it starts off fine but gets worse over future years

- incontinence - more likely with surgery than any other treatment - for most men, it improves over time

- bowel damage - more likely with RT than surgery - usually a problem towards the end of the RT treatment & then improves over time.

The side effects of HT are a different kettle of fish but in France, I understand that it is less common for men to be put on HT automatically. You would perhaps want to clarify that with your oncologist.

The NHS says that 90% of men can get an erection 12 months after RP but this may be natural or by using mechanical aids or medication / injections. They don't gather data on whether the erection is sufficiently firm for penetration. The NHS also says that at least 90% of men are using one continence pad per day or less; those who are left with serious incontinence at 12 months will probably have permanent damage. There is no reliable correlation between the age of the patient and the likelihood of permanent ED or incontinence - it is rather more down to luck on the day.

Some men go for focal treatments fully aware that they may not achieve remission and the treatment may need to be repeated in the future (or other treatments might have to be tried) because the risk of unacceptable side effects is lower. That's fine for realistic men and those who can afford to pay for a repeat treatment (where applicable) but for any man to go into focal treatment with unrealistic expectations, the emotional impact of the treatment failing can be significant. Focal options include cryotherapy, focal laser treatment, HIFU, proton beam therapy. We have a member who flew to the USA for FLA because it wasn't available in the UK - he has since had salvage treatment in the UK. We also have members who have travelled to Prague for focal treatments. The important thing is to understand that focal treatments are not as successful and there are still potential side effects, just not as many as with the radical treatments.

Hello Steve

I am sorry to hear you are going through this. Due to Covid restrictions, I like you, got diagnosed abroad, in Morocco. My first PSA test, result 64, was October 2020 All the specialist here have been trained in France and speak French. So like you it was a whirlwind. There's a difference in approach between Francophone and Anglo-Saxon specialists, here they test PSA regularly much earlier and treat it as a real cancer at a much earlier stage. To add to the confusion I have been told there are 'old school' specialists and younger ones. Old school seem to be more inclined to palliative care and younger to zap it.

I was lucky enough to find an Irish/UK GP here, and she liaised with the Oncologist. I found it much easier to hook into the empathy with her in our native language. Something I definitely needed. I would say all the technicians, nurses, radiologists etc have been wonderful. And here it was so quick to get fixed up with scans, tests. The Specialist Nurses on the site here are wonderful too, and you can Livechat with them.

As well as sympathising with you over the language barrier, and also the speed which it happens, I also found all the information available overwhelming. Before I was used to going to a Doctor, diagnosis, medication. With this cancer there are options on treatment and you have to decide which to take.  You can find Internet services for translation of tests and scan results. That helped too  I would say if you go down the RT route make sure you know the exact procedure and timings for prepping, that was a huge source of stress for me at first. Once it was clarified how priority was worked out it took so much stress away.

I wish you well on your journey.

Michael

Very glad to hear that they think your cancer is localised.

My CT scan was, I think, abdomen. When I had my bone scan there was a hot spot on my shoulder, which is an unusual place. It was interpreted as a suspected secondary prostate bone cancer on my shoulder. My oncologist at the time wanted to leave it at that, saying the HT would stop it growing, and it would only be treated if it hurt!. I went to an oncologist who offered a Choline PET Scan and the option of Steriotactic radiotherapy on my shoulder. I was set up for the CPS but the first appointment didn't work out. I started the SRT on the shoulder and then had the scan. The Doctors/Radiologists at the clinic weren't sure from the bone scan if my shoulder was a secondary, and their initial reaction to the CPS was unsure too, and if it was it was very small. In the end their written report said it was. Its been zapped and my oncologist says no bone cancer now. All of this information came in French, so not easy to navigate.

The point of telling you this is I expected clear answers from the scans, but it isn't always easy even for specialist to know all the answers. As others have said, seek out as much info as possible, stay with the confusion that can cause, and then follow the best route you feel comfortable with. Good luck on your journey.

Michael

Just thought I’d offer a thought as we’re the same age, I had surgery 2 years ago. The decision for me was relatively easy as I was diagnosed with T3 and G9 so I just wanted it gone.

Leading up to surgery, aside from general fitness, I’d second the recommendation to start the pelvic floor exercises. There’s an app called Squeezy for men to help remind you. I still use it now and have not had any significant continence issues.

Post surgery take it easy. Walk a bit each day, and gradually increase your activity levels as you feel stronger. Depending on how physical your work is you might need to be ready to take a few weeks off.

Hope all goes well for you.

If it isn't then ajuvant RT Inc any lymph nodes will probably be recommended.

Fingers crossed for a great PSA result!