We are very grateful to everyone who has shared their story with us on this website. We know that many people find reading the story of other patients very helpful when trying to make sense of their diagnosis or cancer journey. We also know that these stories can be very powerful in helping to raise awareness of bladder cancer and highlight the urgent need for new treatments, research and support for those with bladdercancer.
If you would like to tell your story please do get in touch with us by email at firstname.lastname@example.org
We can arrange for Sara Jane, our Patient Programme Officer, to get in touch to help you tell your story if that would be helpful, and we also have a 'hints and tips' sheet to give you more ideas about what to write.
PERSONAL STORY – PHIL KELLY
Let’s start with the good news first – I have recently passed the important cancer survival timescale of 5 years post initial diagnosis. I’m alive – and well! So that’s all Good!!
True – I no longer have a bladder (nor a prostate and various other ‘bits and pieces’); In ow wee into a urine bag on my abdomen (a urostomy pouch). But then, I had the most aggressive form of bladder cancer: most people with bladder cancer don’t and will not need radical treatment. For me, some things have changed – but I am leading a full and very active life, doing most of what I used to do before,enjoying various UK, European and some long haul holidays, spending as much time as we can manage with our grandchildren, going to music gigs and continuing to partake in a sensible level of social drinking. When I talk about my experience of having bladder cancer, I usually describe myself as being one of the lucky ‘unlucky ones’ – it had been a bit of a roller coaster experience, especially during the first couple of years. But - and it’s a big ‘but’ - I might not have been here – and I am. You could probably say that I am now ‘cured’ – though I don’t like to use that word – not wanting to tempt providence …
Enough! I’m getting ahead of myself – let’s go back to the start of my bladder cancer story.
Symptoms and Testing
It came out of the blue…. Except it was red – very red, bright red, alarmingly red! For a man!!
I looked down in the toilet and there it was – blood in my wee (they call it haematuria). It only happened the one time. I was lucky - it wasn’t something you could miss – or ignore. Although, scared as I was when I saw it, I was thinking that perhaps I should wait to see if it happened again. Fortunately, my wife has a lot more common sense than I do – and she insisted that I call the GP practice to arrange an appointment ASAP.
When I saw my GP a couple of days later, she asked me if I had had any other symptoms and I said, at first, that I didn’t think I had. I was pretty fit and generally very healthy. We’re walkers and have a little dog, so lots of daily exercise was the norm. She went through a set of questions from a list on her computer:
The presenting symptom of one very clear case of blood in my urine was obvious, but she asked if I had previously noticed that my urine had been bloody or discoloured or strong smelling? My answer was No. I later learnt that haematuria (blood in your urine) is the most common symptom of bladder cancer.
· She didn’t ask if I had had repeated, recurrent, long-lasting or difficult to treat urine infections – she didn’t need to ask – she had my medical records in front of her and urine infections are not something you (and she) wouldn’t be aware of. These symptoms are also a common indicator of bladder cancer.
· She asked if I had been having to pass urine more frequently or more suddenly than usual? My answer was No.
· She asked if it was painful when my bladder was full or when weeing? No to both.
· She asked if I had been feeling very tired or having problems sleeping? Again No.
· There were some other questions that I can’t remember – the answer was always No.
Then, when I thought about it, I remembered that I had been feeling more tired after a good dog walk or after driving the car for a long time and had had a nagging intermittent ache in my lower back. Nothing too bad or anything I would go to the doctor about. But my GP was interested and did take it seriously. She arranged for urine and blood tests to be done right away, to see if I had a urine infection and, I realised afterwards, to check if there were traces of blood still in my urine. A urine infection could be a possible explanation for the blood in my wee and the ache in my kidney area. It came as a surprise to me when I received a phone call from her a day or so later – it was a Friday evening and my GP was calling me at home after 7.00 p.m. at night!
She explained that my urine test was clear, so it wasn’t a urine infection; she wanted to let me know right away as she was going off on holiday that night; she told me she had already referred me to the Haematuria Clinic at my local hospital for some more tests. She had also arranged for one of her colleagues to phone me on the following Monday morning to explain more fully about the Haematuria Clinic.
Needless to say, I was quickly on the internet to find out for myself and so, when one of the GPs from the practice did call me as arranged, I had already found out as much as I wanted to know at that time about what the Haematuria Clinic would entail.
This was my first experience of positive and prompt care – and another bit of good luck. Not all GPs are as quick or thorough as mine had been and there remains a concern, nationally, that some people with bladder cancer are not being picked up and referred on quickly enough. All the evidence supports the fact that the sooner any cancer is detected and treated – the better the outcomes are likely to be. There is also an issue re later detection and referral (on average) for women who have bladder cancer. Probably relating to the most common and most obvious symptom being blood in your urine and the complicating factor for women of menstruation and/or gynaecological conditions.
And so …
I attended the Haematuria Clinic and had a number of investigations – including an ultrasound scan followed by what was to be the first of many cystoscopies (an internal camera examination of the inside of my bladder by means of a flexible tube threaded through my penis). A fairly surreal and uncomfortable experience but one you do get used, to over time. You get to see the progress of the camera on a TV screen (if you choose to) as it travels through your urethra (the tube down which urine passes from your bladder). For men it then passes through the prostate (that bit can be a bit sore– so they invite you to cough – which helps) and on into your bladder itself.
And yes – I/they saw a mushroom shaped growth and I started to get a sense of apprehension. I had done a bit of background reading – online – so wasn’t too surprised when we were, subsequently, taken into a side area for ‘the discussion’ – with lots of explanation and re-assurance. I was glad that my wife had come with me and so she was able to be there to hear (and to help to remember) what was being said. The Haematuria Clinic itself was staffed by senior nurses (Clinical Nurse Specialists), their approach throughout was very personal, respectful and sensitive whilst continuing to be very professional, honest and informative. We weren’t told that it was definitely bladder cancer of course, that would come later, but were informed that it could be and that I would need to have an operation to remove the growth (now being called a tumour) and to take biopsies to confirm what it was. My second experience of positive and sensitive care. It was to be an almost universal experience in relation to all the nursing staff that helped to care and treat me over the following years.
The staff at the Haematuria Clinic provided a batch of written booklets explaining what would happen next - the TURBT operation – TransUrethral Resection of a Bladder Tumour. They weren’t able to give a date for when that might be but said that I would be getting a letter from the hospital where I would have the surgery.
I didn’t know until fairly recently that not every Trust has a dedicated Haematuria Clinic and you may, instead, be referred to a hospital Consultant (a Urologist) who will arrange the same set of tests and investigations and will undertake the cystectomy him or herself. It is, essentially, the same kind of experience. I wasn’t to see my Consultant until immediately before my TURBT when he called to see me briefly to sign the consent form.
Everything up to this point (the prompt referral by the GP and the thorough testing at the Haematuria Clinic) had seemed like my situation was being taken seriously and with a sense of urgency. Things were about to change.
Waiting – and Worrying (it’s the worst part)
No letter arrived and there was no communication with me over the next 2 weeks. My anxiety levels were starting to build. I wanted this operation done and to get some answers as to exactly what the tumour was – cancer – or not. So…
I had been told which Consultant (Urologist) would be doing the op – so, in the end, I contacted his secretary to try to get a date – or at least some information as to when I might hear. Fortunately, she was able to look it up and confirmed that I had been scheduled to have my TURBT just under 2 weeks later. I was to use this route to seek information on several occasions thereafter. It was to be the only reliable way to find anything out!
I never did receive a letter but did get a phone call a couple of days later – inviting me to attend hospital the next day for my Pre-Assessment (blood tests, height/weight measurement for the anaesthetic, MRSA check, ECG, etc.). And a week later I became an inpatient for only the second time in my life. Some things had changed since my first time in hospital; some of the medical staff (doctors) came and sat next to your bed to discuss your ‘case’, pulled the curtains round and spoke quietly and directly to you. Some things hadn’t changed, there were still a few medical staff who stood at the end of the bed to ‘discuss’your case and everyone else’s with everyone in the 4 bed bay listening. The food hadn’t improved at all and the nurses were still wonderful – but there just weren’t enough of them and they were seriously over-worked – especially at night. Famously, I received my post-op one-off dose of chemotherapy drug (Mitomycin C) at midnight – when the charge nurse finally managed to make sufficient time to get all her protective clothing on and complete the instillation (insertion of the drug into your bladder through the catheter that was in place to drain urine and blood following the TURBT). The next morning I was seen on ‘doctors’ rounds’ by the Trainee Urologist who had undertaken my TURBT. A fairly young man – but very nice indeed with a good bedside manner. So I ventured the question – him having seen (and removed) my tumour(s) – more than one it transpired – I asked what he thought it might be - based on his experience. He was re-assuring – telling me that, from what he had seen, he didn’t think I was going to have any big problems. Wrong on so many levels! I shouldn’t have put him ‘on the spot’ and he shouldn’t have said anything – because the truth is, as I was to discover subsequently, they really don’t know until the tumour and any biopsy materials have been fully examined by the pathology lab – which takes a week or more. The whole inpatient experience was a bit of a mixed bag – but more good than bad.
Then more waiting!! And this time, it really did seem like an eternity. I had been told by my Consultant and at discharge that I would have an outpatient appointment to get the results of the biopsy within 3 weeks. 2 weeks later, still no letter, and another phone call to the Medical Secretary to try to find out when I would be seen. She wasn’t able to say, she informed me that my Consultant was on holiday but, very helpfully again, did agree to chase it up. Later that same day I received a phone call – inviting me in to a ‘Special’ Outpatient Clinic that had been arranged for the Saturday morning. Alarm bells were starting to ring.
I arrived, with my wife as support, to find that I was the only person there. I was seen by a different Trainee Urologist and he told me, not necessarily in the most sensitive manner that, yes, it was bladder cancer and was a very aggressive form of bladder cancer (in fact the most aggressive form – Grade 3). Not at all helpfully, he said that it was thought to be Stage either Ta (which is non-muscle invasive and has only penetrated into the bladder lining layer) or possibly T1 (which means that it had penetrated into the second layer- the connective tissue layer), but that there hadn’t been enough muscle tissue in the sample tested to be certain – so I was to have another TURBT to get a better sample – with muscle. He said that I would need to wait for another 6 weeks before they could do the second TURBT (called a re-resection) and when we said we had a holiday planned for around that time and asked if it could be delayed until we got back home – re-assured us that that would be fine.
We noticed that the nursing sister standing behind him when he gave us this news was shaking her head and she made a point of accompanying us out of the room and told us in no uncertain terms that we definitely shouldn’t delay the second operation and should cancel or re-arrange our holiday. She gave us the contact number for the Clinical Nurse Specialist and suggested we call her ASAP to discuss what was happening.
More waiting! Only this time we had become alarmed and confused. Why did they need to do a second operation? Why hadn’t they taken enough muscle to be able to check properly? What were the risks of this further delay to me receiving any treatment for what they had now told me was the most aggressive form of bladder cancer?
I am a bit of a ‘terrier’ and wasn’t prepared to leave it there. I did make calls to the Clinical Nurse Specialist, several, in fact, over the next week or so and did finally manage to have a conversation with her. She had been at the meeting that had discussed my case and the results of the biopsies. She confirmed that it was Grade 3, that there were more than one tumour, that yes – there hadn’t been enough muscle tissue to be sure about the Stage (Ta or T1) and she also was very clear re cancelling our holiday plans and avoiding any delay. I went back to my Consultant’s secretary,seeking a timescale for the second operation and asking to see my Consultant. I spent the next couple of weeks pursuing clarification and, eventually, managed to arrange to see my Consultant just before I was due to be re-admitted.
By then I had had an IVU (a Urogram X-ray examination of my whole urinary system - bladder/kidney/ureters etc – with an injected dye that would help to highlight any remaining or additional cancer – elsewhere. We went to the outpatient appointment with my Consultant armed with a list of questions. We never did get to ask them. He proceeded to bluntly present the results of my original TURBT and biopsies – clearly not having read my file and unaware that we had been given the results (for what they were worth) several weeks earlier by one of his Registrars (a Trainee Urologist). He did provide some more information about the number/sizes of tumours and where they had been sited in my bladder – apparently in an unusual place where the bladder wall was thinner and where removing tumours and taking samples was trickier because of the risk of perforation. He did explain (briefly) re treatment options –once we/he was clear re whether or not the cancer was in the muscle. If it wasn’t - then he described me having BCG Treatments and VERY close monitoring. If it was – he said that there were 2 options: bladder removal or radiotherapy (+chemo?). So, it seemed, they were even more uncertain about it than we had thought. We had been told it was either Ta or T1 – the possibility of it being muscle invasive (Stage T2) hadn’t previously been put forward. Not very re-assuring you might say!
The second operation was duly completed on a day patient basis and the now familiar pattern of me chasing people to try to find out dates and timescales for getting the results followed. Eventually, I was able to confirm an Outpatient appointment within 2/3 weeks of the op. This time at an, even busier, Outpatient Clinic than usual we were invited to see yet another Registrar. Oh dear! This one was even worse!
The story continues … Phil will be adding to his story as he writes it. Phil is also one of ABC UK’s trustees