"Bladder cancer isn't a rare cancer, even though it's rarely talked about." - Bladder Cancer Awareness Month

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May marks Bladder Cancer Awareness Month, and to recognise this, rily – Community Champion for our Bladder cancer group, has put together a few facts about the cancer, and shared with us his story to date.

The below makes for an eye-opening and honest read...

Some facts about bladder cancer:

• 10,000 people are diagnosed with bladder cancer in the UK every year.
• There are more than 200 known cancers and bladder cancer is the 5^th most common in the Western World. For men, it’s the 4^th most common in the UK, and 7^th
• Bladder cancer isn’t a rare cancer, even though it’s rarely talked about.
• Once regarded as an older person’s disease, we’re seeing more and more younger people being diagnosed.
• Bladder cancer has the highest recurrence rate of any cancer.
• It is the most expensive for the NHS to treat, but gets very little research funding.
• Diagnosis can often be late, particularly in women.
• Other than improvements in technology, treatment has not changed considerably in 30 years.
• Awareness is key.

Symptoms:

• Blood in your wee (this is the most common symptom).
• Pain or a burning sensation when weeing.
• Frequent urination.
• Recurrent UTIs.
• Abdominal or lower back pain.
• Incontinence.

You may only experience one or more of the symptoms, but if in any doubt, consult your GP. Be aware that these symptoms may be caused by something less serious, but still need to be investigated.

My story:

Hello. My name is Richard – known to the Macmillan Community as ‘rily’. I’ve been a member of the Community for 6 years, and I’ve been a Community Champion for most of that time. In 2013, at the age of 63, I was diagnosed with muscle invasive and aggressive bladder cancer.

It started with a burning sensation when peeing. I tried to ignore it, but as it got worse, I made an appointment with a GP for the first time in many years. I was fortunate enough to see a very proactive GP. He gave me a thorough examination including a digital prostate examination – something you don’t expect on a Monday morning. He did a simple urine dipstick test and said one word, “blood”. Microscopic blood invisible to the naked eye (haematuria). I was given a course of antibiotics in case it was just a UTI and given an appointment in a few days’ time. As nothing had changed, I was referred to urology and had an appointment within two weeks. Without the prompt action of my GP, this may have been a different story.

At my first urology appointment I was given an ultrasound which identified a large mass inside my bladder. A flexible cystoscopy confirmed this. A flexible cystoscopy is a camera in to the bladder via the waterpipe under local anaesthetic. You can see for yourself on screen the inside of your bladder. I had a large growth which some people have described as looking like a sea anemone. I was then booked in for an operation to remove it.

The operation is known as a TURBT (trans urethral resection of bladder tumour). The tumour is shaved away under general anaesthetic. Most people have this done in day surgery or just an overnight stay. In my case, the cut was so deep and severe, I had a four day stay in hospital. Up and about on day two with a catheter in. They don’t let you out until the bleeding stops. The stay in hospital was not too bad as I was generally feeling OK.

A variety of CT, MRI and x-rays, a further TURBT, and then an appointment with the urologist for results.

At this point I was still very naive. I thought that cutting the tumour out would be the end of it. Not so. The urologist sat me down and told me I had cancer (T3/G3). Until now, the word had never been mentioned. I was told my bladder would have to be removed. After that, everything he said was just a blur.

"The members here helped me through my darkest days, and I will be forever grateful to them."

It was at this point I started to consult ‘Doctor Google’. Things didn’t look promising. I now know that a lot of the information I was reading was out of date or misleading. We try and advise members not to believe everything they read on the internet and to stick to recognised sites such as Macmillan and CRUK. This is when I happened across Macmillan’s Online Community. The members here helped me through my darkest days, and I will be forever grateful to them. After a while, I started using my own experience to try and help others who had been in my position. Somebody must have recognised what I was doing, and I was invited to become a Community Champion, something that gives me great satisfaction. A simple thank you from someone means a lot.

I then met my oncologist. She started me on a regimen of chemotherapy to try and halt any further growth, and to mop up any rogue cells. Six weeks of gemcitabine and cisplatin. Long days in the chair, but I was fortunate enough not to have any side effects to talk about.

Further scans and another oncology meeting – scan results showed the growth had been halted. No spread outside the bladder, but still there. My oncologist offered me an alternative to bladder removal. Chemoradiation and bladder preservation. Although many patients in my position opt for removal because of the risk of recurrence, I was told there is no evidence to show one route is any more successful than the other. I chose bladder preservation.

So, if anybody is still with me at this point, we move on to radiotherapy. 6 weeks of daily treatment. I had a PICC line fitted and a chemo infusion pump which I had to wear for a week at a time (5FU and mitomycin). No problems with this, more of an inconvenience. The chemo is supposed to help the radiation work better. Again, I was fortunate not to have any side effects, besides tiredness caused by the daily round trips to hospital. The side effects only kicked in after treatment finished. Fatigue, which wiped me out for a few hours each day, and erratic bowels. I had to plan any trips around toilets and I got to know every toilet in town and beyond. This lasted for several months, but thankfully got better.

"Being told you are clear of cancer can be more emotional than being told you have it in the first place."

Follow up scans and an appointment with my consultant urologist – almost a year since my first GP visit. He reviewed all the test results and told me they could find no evidence of cancer. I had to ask him to repeat. “It’s gone”, he said. “No more cancer”. Well that was it. I turned in to a blubbering wreck. Being told you are clear of cancer can be more emotional than being told you have it in the first place.

So, I’m now 5 years clear with everything functioning normally. I’m happily retired at 68; a regular in the gym; and I do lots of dog walking, golf and school runs. We’ve also just celebrated our 40^th wedding anniversary!

So, this should be a happy ending, but hold on. A few weeks ago, I went for what should have been my final check-up after 5 years. We saw something abnormal on my bladder lining, and I am waiting to go for a second opinion in a few weeks. Don’t we just love the waiting? If it turns out to be a fresh growth, then hopefully it has been caught early and can be dealt with. We shall see.

Best wishes to all,

Richard (rily)

References: Fight Bladder Cancer UK. Action Bladder Cancer UK. CRUK.

Affected by bladder cancer? Go ahead and share your thoughts with us in the comments section below. You can also join our Bladder cancer group and get talking to others who understand what you’re going through.

A while back Macmillan and Action Bladder Cancer UK collaborated to produce guides on the symptoms of bladder cancer, and tips on taking care of yourself. You can find these guides here.