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Why did we have to go to England for prostate cancer op?

 

Ahead of the NI March for Men in Belfast on Saturday to raise funds and awareness for Prostate Cancer UK, Kerry McKittrick talks to sufferers Billy Dickson and Mervyn Bryans about why men here need access to the latest surgical treatments for the disease.

Each year more than 1,000 men in Northern Ireland are diagnosed with prostate cancer. The good news is that the illness has an 84% survival rate and, as with most cancers, early detection is key.

Treatment of the disease depends on each individual's case but the three main options are: radiotherapy, brachytherapy - the implantation of tiny radioactive seeds in the prostate - or the removal of the prostate by surgery.

The prostate gland is generally nine inches inside the body, so removal is a major operation. At the moment in Northern Ireland the only removal option available is open surgery.

However, those willing to travel to England can have robot-assisted keyhole surgery which is much less invasive and has a significantly reduced recovery time. This kind of surgery does not yet exist in Northern Ireland as there is currently no funding for the equipment.

Charity Prostate Cancer UK is currently calling for an urgent review into the provision of surgery options here. For now, though, NI men opting for robot-assisted surgery must gain approval from their local health authority and travel across the water for their operations.

An additional ordeal or those who travel is the prospect of having to go through airport security and flights just a couple of days after having had a major medical procedure. The charity is campaigning for men to have the more advanced treatment as close to home as possible.

We talk to two local men who made the journey to Cambridge about their experience.

'It was rough for my wife as there wasn't anyone there to support her'

Retired community worker Billy Dickson (59) lives in Belfast with wife Jacqui (54). They have two children, Deborah (25) and Mark (22). He says:

I was diagnosed with prostate cancer last year. My GP called me in for a routine check-up purely because I was the right age for it last November. After an examination he said that my prostate was swollen which concerned him. My PSA (Prostate Specific Antigens) level was high too so he referred me to a consultant. Two weeks later I went back for biopsies - I had 12-13 of which four were cancerous.

Afterwards I got a letter to go to the Ulster Hospital in Belfast for the results - I was told to bring someone with me. I met with the consultant who told me that this cancer is graded one to 10, with 10 being the worst case scenario. I had grade seven and I didn't hear a thing he said after that, which is probably why they tell you to bring someone along.

I was referred to Addenbrookes Hospital in Cambridge for a consultation with Mr Shah. You visit the urology clinic and the ages of the men there range from some in their 20s to some in their 70s. In a sense this was a good thing for me as I realised I wasn't the only personwith this. Mr Shah said that part of the tumour had ruptured and it needed to be removed. I went home and returned two weeks later for the surgery.

As it turned out, by the time I went for surgery the tumour was fully ruptured so instead of taking three and a half hours the operation took seven.

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Billy Dickson with his wife Jacqui

I think it was rough for my wife Jacqui because she was sitting outside on her own in the hospital for the whole time.

There wasn't anyone there to support her because we were in England. She was just waiting for someone to tell her everything was okay. All Mr Shah would tell her was that the operation was technically challenging, but he got all of the cancer.

I was discharged the next day and spent the night in hospital accommodation, but that's not available for most people. Most men have to check into a hotel before they go home the following day. I have to say the staff at the hospital were fantastic, very slick.

The surgery, which requires six incisions to the stomach, was done on the Thursday and we came home on Sunday. I had to get a wheelchair through the airport because I was catheterised, so it was a bit embarrassing.

We had to travel to England for the surgery because there is no equipment to do it robotically in Northern Ireland. There was discussion about it a few weeks ago, but the health authorities here haven't got the funding and, because of the current state of Stormont, nothing can be sorted out currently.

I didn't have any other treatment when I came home. It did take me a while to recover but if someone had told me in April that I would feel as good as I do today I wouldn't have believed them. I don't think I'll ever feel 100%, I'm at 90% and I'm happy with that. I did exactly what the doctors told me to do afterwards, so I don't have to use pads any more. I've spoken to other men who had the same surgery when I did and one man has no bladder control at all.

I had my PSA level taken a couple of weeks ago and it was 0.03 - before surgery it was 4.7. I'm monitored every six months at the Cancer Centre in Belfast and it will be five years before I can say I'm cancer free. But I'm happy with the way I am.

At a fundraiser a few weeks ago I was talking to other men and found it really helpful.

My wife Jacqui has organised the March for Men to raise awareness about the disease and the treatment options here. We've been astounded how many people have been affected by prostate cancer - both men and women have contacted us.

Women are usually the people who encourage men, whether it's their husbands, sons or another male family member, to go and get checked out - so information is important for them too.

The march is to help men who have been through this kind of thing in Northern Ireland because there is very little support for us. We don't have anywhere to go to talk about things and this is our way to get the word out about prostate cancer.

It's something that has been happening in England for a while now, but this is the first time it's happened here. It's not just for men to take part in - we want to raise women's awareness just as much."

  • The NI March for Men to raise funds and awareness for Prostate Cancer UK will take place on Saturday at the Stormont Estate in Belfast. For more information search for Northern Ireland March for Men on Facebook

'I had to fly home with a catheter attached ... not ideal'

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Close watch: Mervyn Bryans

Retired civil servant Mervyn Bryans (63) lives in Belfast with wife Yvonne and they have a daughter, Catherine (25). He says:

I was working in northern Iraq when I diagnosed with prostate cancer five years ago. It was necessary for me to have a full MOT for insurance purposes.

My PSA level had increased in the space of a year and there was also the issue that my grandfather had, what he called waterworks problems. My mother had also had breast cancer although medics don't know if that is related. Prostate problems on the male line can increase the likelihood of grandchildren having it.

I went to my GP for the usual tests and was referred to an urologist who recommended a biopsy. The doctors carried out 19 biopsies and one tested positive for cancer. They didn't seem worried about it and told me they would monitor me for a year.

There's nothing to prepare you when you get a letter from the Cancer Centre in Belfast; I was deemed to be low risk until the cancer had increased by 40%. At that point I was a candidate for brachytherapy - seed implants of radioactive materials. I had that four years ago and everything was fine after that. After testing every six months, though, my PSA level was still high and the urologist asked if I would be happy to pay £3,000 to go to London for a scan, which I did. It's not available any other way.

The results came back to say there was a problem. My only option was surgery which could involve either a full opening from pubis to navel or the robotic surgery in Cambridge.

There's a big difference between the two - the first has a much longer recovery period but the robot has an equally good success rate.

I went over to England in May this year which was arranged by the team at the City Hospital in Belfast. My surgery lasted for five and a half hours.

Two days later I was discharged and had to check into a hotel for a night. It was totally not fit for purpose - there wasn't even a lift in the building. I had a catheter in as well as a drainage tube and was in quite a lot of pain. The next day I had to fly home, including going through security with all of the medical stuff still attached to me. It was not the ideal situation.

I had problems with my catheter and had to go to A&E here but the doctors didn't have my notes which was quite stressful. I'm okay now. I will have to attend the Cancer Centre every six months for the next five years and it's fantastic - the people there are very knowledgeable."

Prostate Cancer UK would like to hear from anyone living in Northern Ireland who has had a similar experience, having travelled to England for prostate cancer surgery. Email campaigns@prostatecanceruk.org

Signs and symptoms of prostate cancer

Prostate cancer that's contained inside the prostate (called localised prostate cancer or early prostate cancer) doesn't usually cause any symptoms. But some men might have some urinary problems. These can be mild and happen over many years and may be a sign of a benign prostate problem, rather than prostate cancer. The advice is always to get checked out by your GP.

Changes to look out for include:

  • needing to urinate more often than usual, including at night - for example, if you often need to go again after two hours
  • difficulty starting to urinate
  • straining or taking a long time to finish urinating
  • a weak flow when you urinate
  • a feeling that you're not emptying your bladder fully
  • needing to rush to the toilet - sometimes leaking before you get there
  • dribbling urine after you finish

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