Post surgery , and ED help

That is true Colin.

Once treatment finished that's it, all over.

Only PSA now unless cancer  returns which would show up via PSA.

Must admit a strange situation when u don't get to see anyone again.

As far as ED goes I would contact the hospital and ask them if they help with that or direct u to a department that does.

Otherwise back to the GP.

Best wishes

Steve 

Hi Colin

Well the good thing is that your surgery is over and you are recovering well. The ED can be a problem after surgery and it's a bit of a Postcode Lottery (No I am not advertising) The best thing I suggest for you is to contact your urology nurse and ask if they have a specialist erectile dysfunction clinic. Most hospitals do and can get you an appointment.

Failing that you can contact Ask a Nurse who will be able to give you a specific answer to your question.

I hope this helps.

Best wishes - Brian.

Perhaps it varies area to area. I had my op 12 months ago. I was seen by the Surgeon / Consultant at 6 weeks and then 3 months after that. Since then I have been having 3 monthly telephone appointments with a CNS just to check how I am doing and to discuss the PSA results. It was also arranged for me to have a telephone consultation with an ED specialist at about 4 months and an incontinence specialist at about 3 months and 5 months. Then I have also been having PSA tests at the GP's carried out every 3 months. I suggest you contact Urology to ascertain what is planned for you, whether you have to request the PSA tests and consultations and also to advise them you have concerns about ED. I was put on 5mg of Tadalafil for 2 years, which I understand helps with penile rehabilitation. It is still early days for you but there are options to help with ED - tabs, pump, injections, cream plus possibly other things. You need advice from an ED specialsit on these matters. It is also important for you to understand how the op went and whether the lab analysis confirmed (as best as possible) whether all the cancer had been removed or whether it has likely spread. I was told that by my Consultant at 6 weeks post.

My husband had surgery coming up to 3 months ago. He had his first post op PSA test on 16th August and he got the results of this and the histology on 4th September in a telephone appointment with the consultant. During the call he was asked about ED and the consultant said he could refer him to the ED clinic at his next appointment in 4 months. My husband’s asked him if he could do that now and he agreed. My husband received a copy of the referral letter in the post a few days later, but no appointment yet. The person who it was addressed to is in the urology department. The consultant told him that under no circumstances should he buy anything himself for ED, so please don't be tempted to order anything online yourself.

I would strongly advise you to contact the urology department to ask about the follow up process as they should have advised you when you need to have your first PSA test. When my husband was discharged from hospital the post op plan was detailed on his discharge report and when he had his catheter removed the nurse gave him the blood test form and he had to arrange it with our GP surgery.

When my husband was diagnosed a Macmillan cancer support nurse was present and we were given a leaflet with contact details for her and her colleagues and we emailed her when we needed to ask any questions.

I'm not sure where you are in the country, but I find it shocking that just 5 weeks post surgery you have been left with so many questions. 

Things haven't always been straightforward for us, mostly because of our GP surgery, but compared to your situation it seems like we've been well looked after.

My husband was referred to the community continence service, who sent a years supply of Tena shields and the community physio for help with his pelvic floor exercises. He's had monthly appointments with the physio, who's the only person he's seen for weeks and his next appointment will probably be the last. We've actually looked forward to the appointments, especially as the location is opposite one of our favourite pubs and not going will add to the void left by not seeing or hearing from anyone.

If you look at my profile you can read about our journey.

GR1 said:

We've actually looked forward to the appointments,

That's so true. You spend so much time - diagnosis, treatment, follow up, radiotherapy, surgery whatever etc, with appointments, waiting for appointments  and then BOOM.

You end up in a wilderness - you are "cured" - it's a weird feeling. For me my personal journey has been 20 months - I am still on HT but I am left to sort my last two HT injections out myself. Remember to have 6 monthly PSA tests myself and no more meetings.

I am now under my oncology department PEASS (Prostate Easy Access Support Service) - I am watched from a distance and if I want anything I have two contacts (a clinical Support Nurse and Cancer Support Worker - who I have met with once).

Perhaps like me - normality has returned and you will just have to go to the pub like everyone else - just for a drink - happy days!!

Best wishes

Brian.

Not  just a drink. Food has to be involved.

Boom is a good description.

I remember in 2017, treatment finished in March, had 6 sessions of counselling spread over 3 months at the same hospital.

Then walked out of there for the last time and wow, like I'd just hit a brick wall.

I'm saying this cos it might help others and obviously it does get better but does take some considerable time.

Also probably more than 6 councelling sessions.

All the best

Steve 

Steve you reminded me - I also had two telephone calls asking if I was coping OK and offering counselling which I declined. I also had a call from the Pharmacist asking if I was getting on ok with the Tadalafil tablets. I have truely thought I have received absolutely splendid service from all those I have dealt with from the drinks / food lady in the hospital right up to the Consultant.

Hi Static

I can agree with you there. I spent 10 days in two hospitals (being moved from one to the other). and the staff right the way from cleaner to consultant were amazing. Never having been in hospital for 66 years i had no idea of what to expect but from the Acute Medical Unit to the Urology ward I was treated with respect and dignity.

On discharge I wrote to both ward managers to say their staff were a credit to the NHS. I also went back a week later with plenty of chocolates and sweeties.

I agree Brian. A little bit of appreciation goes a long way. I occasionally take in a little treat for the technicians and oncology staff of home made British cakes like Parkin, lemon drizzle and flapjack. Being gluten free I have had to do some experimenting. Living in Greece they are usually intrigued because they are very different from the sweet Greek offerings. I have learnt to take photocopies of the recipes to hand out as I am invariably asked for them by both the male and female staff.