We know that adjusting to life after prostate cancer can take time, dealing with the side effects of treatment and the emotional impact of what's happened. That's why, with the help of men like Richard Buckley, we've updated our booklet – Follow-up after prostate cancer treatment: What happens next? He tells us about his experiences of the disease and why he wanted more to be included about mental health.

9 Jun 2016

Tell us about when you were diagnosed
I was diagnosed with locally advanced prostate cancer in December 2012, aged 67. I didn’t have any symptoms so it was a real shock. My PSA level was 8 and my Gleason score was 7.

What treatment did you have?
I had hormone therapy to shrink my prostate and then radiotherapy between April and June 2013. The side effects were difficult to deal with but I was well supported by the doctors and nurses and knew what to expect.

What happened after treatment?
After my treatment I had PSA tests every three months. I found the PSA tests reassuring. My PSA was 0.1 after the treatment and seeing it stay low was comforting. I moved house after treatment from Somerset to Gloucestershire, so my care felt quite disjointed. I was told that I would see the oncologist once a year unless my PSA started to rise.

Was your follow-up what you expected?
No – I thought I would be a lot more supported and would know who to turn to if I had problems. Before and during treatment, I had a lot of support and contact with doctors and nurses. Afterwards, I felt like I didn’t know what to expect or where I could go for help. It made me feel that I had to deal with everything on my own.

Did you have any side effects from treatment?
Yes – I put on weight and I had sexual problems after treatment. I had problems getting an erection and the sensations were different. It was partly from nerve damage and partly from the lack of blood supply. I had an active sex life before treatment, so it was very difficult to deal with. I asked to be referred to the erectile dysfunction clinic. It was quite a long waiting list but eventually I saw a specialist nurse. He explained that I could take tablets to help with erections.

My wife and I had to plan sex in advance and it made it all feel a bit clinical

I first tried a tablet called sildenafil, which helps you get an erection if you’re sexually aroused. I had to take the pill half an hour before any sexual contact as it takes a while to work. It worked well but it took the spontaneity out of sex, which was an issue. My wife and I had to plan sex in advance and it made it all feel a bit clinical.

I went back to see the specialist nurse and he suggested I try another tablet called tadalafil. It works for up to 36 hours so I just took a small dose once a day. It worked well but I started to get a few side effects. So I went back and I’m now on sildenafil again. Being able to be open and talk about things with my wife has really helped. It’s not easy but we knew that we weren’t going to fix anything if we couldn’t talk about it.

How did you feel after your treatment?
It was only after treatment that everything I had been through really started sinking in. Treatment was supposed to make me better, but in some ways I actually felt worse than before. My life, physically and emotionally, had been taken over by treatment, appointments, and check-ups. After treatment, I was exhausted and I felt like my life didn’t really belong to me anymore.

I didn’t have any symptoms when I was diagnosed. So I was worried that something could still be wrong and I wouldn’t know. I found it quite difficult to trust my body, wondering if any niggle meant that the cancer was back. Living with the fear of cancer coming back made me feel on edge. It’s a feeling of constant uncertainty that’s difficult to describe if you’ve not had cancer treatment.

I felt pressure to put the cancer behind me and ‘get back to normal’. But I felt like a different person – I wasn’t sure what ‘normal’ was anymore. Everything was so different: I thought about life in a different way and I felt physically different as well. About six months after my treatment finished, I had depression for the first time in my life. I felt total despair, as if a dark cloud had descended in my world. I wasn’t sleeping and had lost all motivation to do things. I’d also started comfort eating and drinking too much.

How did you deal with these feelings?
My wife searched on Google for cancer care in our area and up popped a Maggie’s Centre. We went there together. They were very friendly and sat down with us for a cup of coffee. They asked me about what had been going on and I opened up. They offered me four weeks of counselling with a clinical psychologist. The counselling helped me understand my feelings and my depression. It also helped me acknowledge the anger I was feeling because I hadn’t felt supported.

I wouldn’t say I am a mindfulness convert, but it definitely helped and I started to feel better

After the counselling, my wife and I went on an eight-week Mindfulness course at the Maggie’s Centre. I wouldn’t say I am a mindfulness convert, but it definitely helped and I started to feel better. Personally, I didn’t want to take depression medication so it was good to find other things that helped. About six months ago, I started feeling depressed again and went to my GP. He referred me to counselling on the NHS. It took about four months to get an appointment and I was offered 12 weeks of counselling, which is helping. Although I still sometimes get mood swings, things are a lot better these days.

Did anything else help?
As I had put on weight from comfort eating, my GP recommended I go to Slimming World. I lost two stone and feel a lot better. This helped with my depression and also helped with the sexual problems. I’ve also found the Prostate Cancer UK Specialist Nurses very helpful, especially when I found it difficult getting through to someone at the hospital. I asked them about my PSA level when it was rising slightly and they explained what it meant and gave me the confidence to contact the hospital team about my concerns.

What advice would you give someone finishing treatment?
Work out who your main contact or 'key worker' is supposed to be. It’s important to know who to contact if you’ve got questions and worries. It could be your GP, a nurse at the hospital, or someone else. Talk about things and get support. I felt really alone at times and it was only by talking about things and finding other people with similar experiences, that I realised I wasn’t the only one with problems.

to be able to move forward, I needed to see myself as a person, not just a patient

Try to regain trust in your body and in yourself. You might feel different as a person after prostate cancer and treatment. Take your time to recover, physically and emotionally. Find the things you enjoy in life and keep doing them. Someone once told me, ‘You’re more than just your cancer.’ It really stuck with me – to be able to move forward, I needed to see myself as a person, not just a patient.

Get information. Prostate Cancer UK’s booklet, Follow-up after prostate cancer treatment: What happens next? tells you what to expect and where you can get help. There are sections to fill in so you can note down all the contact details you need.

What was your role as a reviewer for our booklet?
Prostate Cancer UK’s information is updated every couple of years and they involve people with personal experience to make sure the information is as relevant and useful as possible. I commented on the drafts, made suggestions, and they asked me questions about changes.

I’m really proud that the new draft includes more information about the psychological impact of treatment. It’s been a big issue for me and I want other men to know they’re not alone. I’m also glad that the booklet encourages men to seek support when they need it. At points in the last few years, everything has seemed pretty hopeless. But things have improved so much – I’ve realised that things really can change for the better.

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