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Ian, 78, was diagnosed with G3T1 non muscle invasive cancer in 2021, and has undergone BCG treatment.

Please allow me to share my story with you.

My name is Ian, I will be 78 [in January 2023]. I grew up on a small farm in Devon, went into engineering after I left school and became a Design and Technology teacher in 1973, and I retired from teaching in 2013.  Just after that my wife had to have major surgery, so being at home meant I was her carer while she recovered.  After a year of being out of work I felt that I needed something to do, so I became a Design and Technology technician, preparing materials for wood and metalwork, assisting in practical lessons, checking and ordering stock.  Finally, because of my previous experience, teaching a wide range of subjects when staff were absent  - apart from wood and metal, there was product design, computer aided design [CAD], computer assisted machining [CAM], electronics, textiles, though I never did food technology!.  I finally retired from that school at the age of 67

A few months later I was asked if I could take over the work of the technician in another school for a few weeks whilst he had, and recovered from, a hernia op.

Weeks went into months, as when he returned it was during a period of major refurbishment for the department, and so final retirement from full time work began when I was 68.  As I still felt fit, I started part time work as an examination officer, first having to supervise large groups in a hall with up to 10 other staff and finally in separate rooms with small groups of students who had special requirements. I finally retired from that in 2020 at 75 years of age.

I started smoking in 1963 and managed to quit that in 1984.  I have never managed to drink alcohol without feeling sick and my GP diagnosed me as suffering from alcohol intolerance or poisoning.  My wife and I don't eat much processed foods but cook our own. We don't have any hobbies, but with 15 grandchildren and 5 great-grandchildren we have a fairly busy life and we like to go on a coach trip about once a month, usually a weekend trip or a five day trip with a local company which serves our needs very well.  Being diagnosed and treated for bladder cancer has not really affected me except having to plan our family visits and our coach trips around hospital appointments except for one time when I suffered a bad water infection which resulted in a trip to A & E and 2 days in bed.

Early Symptoms 

I first found something wrong when I found my wee was dark brown when I went to bed one night in July 2021.  I had a sample bottle, so I took a sample and told my wife.  The next morning I took the sample down to my doctor's surgery and, even though Covid restrictions were in force, I had a phone call within two hours from a nurse who informed me that there was definitely blood in it, and that she was sending it off for analysis and referring me to Burton hospital for an internal examination.

Diagnosis

That examination ( a flexible cystoscopy , where a miniature camera in a flexible tube is inserted into the bladder and the specialist can then look inside the bladder) took place on 16th August 2021 and due to Covid I had go to that on my own.  At first I couldn't see anything wrong and the specialist was saying "that looks good", "yes that looks good", but then I could see what looked like lots of small thin worms but she said they were just fatty strands. Then there were some darker red areas.

It was at that point in the examination that the ‘C' word was first mentioned, though after the examination, the specialist tried to play it down, saying that although some of the areas looked cancerous it might be that they were simply warty type growths, but that she would recommend me for a procedure where I would be operated on and some of the cells removed and sent off for examination.  I then had to go out of the hospital to meet my wife and tell her the result.

Because I felt so well, we both felt optimistic but at the same time realistic that something major could be happening.

Now we entered the realm of jargon. [Jargon shown thus and explained thus)

When the letter for my appointment came through, it said that I was going to have a TURBT procedure scheduled for 12 September 2021, and I would have to have a Covid test and pre-op checks in the week before.  My daughter and my wife took me to the hospital early on the morning of the 12 Sept and of course they had to leave me outside the ward when I went in.  The surgeon came around at about 8am and explained that TURBT was Trans Urethral Resection of Bladder Tumour where he would insert a camera, (under anaesthetic), examine the bladder and remove as much of the tumour as he could, sealing the area with a laser as he went.   However he told me that it might prove difficult as a lot of the growth was in a diverticulum, a sort of pocket that had formed at the top of my bladder which was going to be harder for him to get into.  After the procedure they would then fill my bladder with a chemical solution to help kill off any possible harmful cells and would leave a catheter in to drain it away later.  I went to theatre at about 11:30 and the next thing I remember is that about 3pm someone was telling me it was time to wake up.  After I came round I was moved up to a single bed ward and the surgeon came around at 8pm to tell me that the operation had gone better than he had hoped, and he had been able to remove a good deal of the growth, and sent off samples to a lab for analysis.

The following day I was sent for a CT scan, which I found out later was to check for any signs of cancerous cells outside my bladder.  During the CT scan a liquid [contrast] was injected into my blood to help show up blood flow and I was told it would make feel warm and maybe want to wee.  It did!

Later that day, the catheter was removed but for the first 12 hours trying to urinate was very painful and I could only manage a few ccs each time. However it gradually became easier and by the next morning I was able to wee fairly well so I was discharged on the 14 September with the news that an appointment would be made to see me to discuss the results and any further treatment that might be needed.  (I learnt in December 2022 that the surgeon in charge on that day died recently.)

That appointment took place in early November and my wife was allowed to come with me.

We met a doctor, who had three nurses with him and I was given a folder with information about bladder cancer in it.  He explained that the results showed I had G3 T1 NMIBC (Non- Muscle Invasive Bladder Cancer ) tumours and showed me a picture which explained the grading system. He then went on to say that the type of tumour I had was quite aggressive and because of its location in the diverticulum made it harder to reach, he was going to refer me to a specialist in Derby as there was a chance I might have to undergo complete bladder removal [cystectomy] and if that was the case, they were better equipped at Derby to deal with that. 

It was with some trepidation that my wife and I turned up at Derby hospital and waited to see the new specialist.  However he sat with us and showed us the results of the CT scan, showing us where the diverticulum was sited.  He talked about how aggressive the tumour was but then said that considering my age, he felt that it would not be right to consider cystectomy yet as it was a major surgery, although it would remove the cancer completely, he felt I would a suitable candidate for BCG (Bacillus Calmette-Guérin ) therapy. I remember my wife and I both looked at each other and I said "BCG, isn't that for tuberculosis?".  He explained that it was a treatment that was based on that vaccine but it was very successful in treating bladder cancers.  No one knows exactly how it works but somehow it helps the body to kill off the cancer cells.

Treatment

He felt that I was a good candidate for BCG and explained how it would be a course of six treatments with a solution of the BCG being put into my bladder once a week, left in for 2 hours, and then all the precautions of removing it afterwards [sitting on toilet to avoid any splashes, thorough washing of the genital area and hands afterwards, putting half a bottle of bleach in the toilet and leaving that at least 30 minutes before flushing and repeating that for 6 hours after each treatment].  He also booked me in for a further TURBT procedure which was booked for 28 December 2021 so that he could be sure what he was dealing with.

However, during pre-op checks, the nurse found evidence of an infarction ( indication that I might have suffered a heart attack at some time). I had never had any indication of this but the nurse said that the specialist might need me to see a heart expert before undergoing the operation as if my heart was weakened, it might be dangerous to go ahead. In the event, the anaesthetist recommended that I had an epidural instead as it would be less risky.  Naively I thought that this meant I would be conscious during the operation but no, I was given the injection in my back and woke up later back in the ward, where the staff explained I would have to wait until my legs returned to normal (I couldn't move them at all at first.  It took about 3 hours for me to regain full use of my legs and be able to wee again.  I happily phoned my wife and she and my daughter came to pick me up. I had another wee just before they arrived and then a nurse accompanied me to the hospital entrance just to ensure I got there safely.

It is only about 30 minutes journey home but as we got within 5 miles I began to feel I needed to go to the toilet again. Of course nowhere was readily available but just as we approached the final mile, a petrol station with a customer toilet - Hooray! - only to find out the toilet was closed. Back in the car I said to my daughter that about 200 yards away there was a field and I'd go in there. By the time she stopped there, I was really desperate so out of the car, climbed over the gate but, due to the epidural I was still slightly weak so fell on to my knees as I landed, never mind - finally relief!

That night I had the urge to wee quite frequently but each time the gap between grew longer and by the following day I was back to normal.  At the post-op meeting my surgeon at Derby explained that the resection had gone well, that they had managed to remove quite a large amount of tissue, some of which would again be analysed, and that the teams from Derby and Burton would discuss the merits of undergoing BCG therapy in my case. I asked if the treatment could be undertaken at Burton as that would be much easier for me to travel to and he agreed that he would ask if the Burton Urology team would be willing to take me on.

In the meantime I had to go back for another CT scan and this time an MRI scan as well, again to ensure that there had been no spread of cancer to any other part of the body.  MRI proved a little traumatic at first, I was put on the travelling bed which then moved into the tunnel.  I had been told that the scan would take about 20 minutes to complete and was given a button to press.  Now the roof is only a few inches above your head and the bed stopped.  I was beginning to think that I didn't like being trapped in there and was about to press the panic button, when the bed began moving again and I found my head was no longer in the tunnel - relief!

In April 2022, Burton Hospital sent for me to finalise details for my first round of 6 BCG treatments to take place at weekly intervals and to discuss possible side effects:

• having an irritated bladder, which feels a bit like having a urine infection
• passing urine more often and more urgently than usual
• having blood or debris in your urine
• flu-like symptoms for 24 to 48 hours after each treatment
• discomfort and pain when passing urine

and what to do if any of them should occur basically go to A and E at Burton Hospital.  Also I would have free car parking while attending for the treatments!!

BCG treatment

My first date was 9 May 2022 and everything went well.   My wife and I arrived at the Urology department and were shown to the day ward, my wife being given a seat in the waiting area just outside.  I took in my urine sample and was prepared for the treatment.  As the tumour had been in a diverticulum at the top of the bladder, I would have to remain lying there for the duration.  This was my first time of having a catheter inserted and I experienced no pain, just a slight twinge as it passed through the prostate [I asked later if that was the case as I could hear several men gasp in pain as their catheter was inserted].  Then the BCG solution was injected through the catheter and the tap closed. The nurse then checked the time with me and said that she would be back, although she did pop her head round the curtains occasionally to see if I was doing OK.   Just before the two hours was up she came back, drained my bladder, removed the catheter and I was free to go. I met my wife outside and found she had been well-looked after, given tea and biscuits and updated on when I'd be out. 

No real side effects from this first round except a little blood in my pee at eight hours and needing to wee more frequently the first 24 hours so onto round 2 on 16 May.  This was a repeat of week one's experience so all going well, so on to the third round on 23 May 2022. This time I did have a reaction 3 days later when my temperature began to rise and I felt very weak. By 11pm my temperature had reached 104.5?F [40.28C] so phoned 999.  After I explained that I was receiving BCG treatment and that I should go to Burton A & E, the operator recommended that I get someone to take me to A & E as a) an ambulance would only take me to the nearest A & E [Walsall] and b) would be nearly 2 hours before arrival so phoned my daughter!

By 12 midnight I had been booked in and by 12:30 seen by a TRIAGE nurse, then a long wait until 4:30 am to be seen by a doctor who prescribed anti-biotics.  They definitely worked, and later that day I phoned the Urology team and they cancelled my next due date (30 May) and added a week after what should have been my 6th dose.

When I arrived on the 6 June, I handed in my urine sample, but it was slightly high on infectious matter, so I had to give another sample and that was OK.  I was advised never to take a sample from your first wee of the day as it will always contain higher levels.  Always take one just before leaving home or at the hospital!  This time my usual nurse was accompanied by a student nurse.  I was asked if I minded (of course not, it is important that new people are trained and must gain experience).

The date for 13 June was postponed because we had a pre-booked coach trip and so 5th and 6th courses were completed on 20 and 27 June though, strangely on the last one, administered by a different nurse, she removed the catheter after injecting the dose. When I asked why, she seemed a little puzzled that it had always been left in before.

After BCG

I received an appointment for 23 August 2022 for another rigid cystoscopy and TURBT.  I arrived on the due date, was seen by the anaesthetist, who said he had examined my ECG and that it wasn't actually an infarction but a blocked bundle syndrome, and that everything would be alright.  The surgeon came in to check what I understood what would be happening today so I told him that I was expecting him to be examining my bladder and doing a resection.  He said, "Good, that's what he had planned".  I was taken down for surgery and came round in the Recovery area.

At first I was alarmed when the nurse told me that the surgeon had not actually done a resection that day.  At that point my first thought was "it must have grown so big that he could do nothing and that will mean having to have my bladder removed" - but then she went on to say he hadn't done a resection because he'd had a good look around and could find nothing!  I could scarcely believe it and now I had to wait for my wife and daughter to come and pick me up so that I could tell them this good news!

A booster session of three BCG courses was arranged for 21 and 28 of September 2022 and 5 October 2022 and none of these led to any side effects.  After these I had a follow-up flexible cystoscopy on 21 November 2022 and there I could actually see the difference between my first one in August 2021 and this one. The bladder wall looked healthy and pink all over, no dark patches and no fatty strands. Finally I could really believe it's true - what a Christmas present!

I now look forward to my next flexible cystoscopy round about March 2023 and hope to be able to report all is still well.

Living with Bladder Cancer

Actually, for me, it hasn't really made much difference, except possibly being more aware of an urgent need to go to the toilet sometimes.  If I am sitting down it can be several hours before I need to urinate, but other times when standing up and particularly when doing anything with running water (e g filling a kettle), I suddenly urgently need to wee.

Out and about I don't usually have a problem but I do carry with me a request card (from Macmillan Cancer Support, explaining that due to my cancer treatment I may urgently need to use a toilet), but I've only needed to ask once (at a chemist shop) and was not refused.  I also have a RADAR key allowing entry to disabled toilets and so far the only time I would like to have used it, I had left it in a hotel room while going out - never again!

I know that Burton Hospital will be monitoring me for the next three years, first at three monthly intervals and later at six monthly intervals and then I will be having a further round of 3 BCG treatments within the next 6 months, but generally there is nothing I can't work around in planning trips and days out.  In fact my wife and I usually make it a day out when I have treatments, either by going for a meal before or after the treatment, depending on the time of the treatment.

It hasn't really affected my family life greatly, though family members (and others who know I've had bladder cancer) tend to try to do more for me like carrying shopping, which makes me feel both cared for (because they think I need to be helped) and frustrated as I don't feel any different.  I do get tired more quickly doing things like gardening, but I feel that's more due to my age, not the cancer or treatment.

In June 2022, I joined the Derby and Burton Hospital's Cancer Support Group (it's not been set up very long) and my first reaction is that, like me, none of them had heard of bladder cancer before being diagnosed.  It is good to be able to talk to others about their experiences (the longest survivor has lived with it for over 20 years and still has his bladder) although everyone is different, and to be able to hear information about developments in bladder cancer treatments.  In the October meeting we were given a talk by Professor Richard Bryan from Birmingham University.  He outlined some of the new treatments that are being investigated and crucially gave information on how common it actually is (figures vary between 1 in 5 and 1 in 9 of all cancers diagnosed in the UK, with the difference being how figures are recorded, whether recurrence is classed as a new occurrence), how expensive bladder cancer treatment is, and what a small percentage of research funding goes into bladder cancer research.

Somebody asked about the production of the BCG vaccine and Professor Bryan confirmed that there is a worldwide shortage due to the major licensed manufacturer having some production difficulties, although they are hoping to start a new facility in Europe within the next 5 years. Unlike the Covid and flu vaccines, it cannot be synthesised but is dependent upon the growing of tuberculosis bacteria from which the BCG can be made. This imposes restraints on supply. Due to the world shortage, UK hospitals are, in most cases, giving revised courses of BCG, for example giving treatment over 12-18 months rather than the original standard of up to a 3 year maintenance course of BCG.

With my circumstances, (good health in general, good support from my wife and stable financial situation) I haven't felt a need to contact other websites, though it is useful to be able to look at various sources of information and compare their outputs.

Recently I met someone who had just been diagnosed as having non-muscle invasive bladder cancer and he was most grateful when I was able tell him more about the upcoming treatment he was facing as he had been told what would happen but didn't really know what it would be like. Unfortunately due to his circumstances he felt unable to come along to the Bladder Cancer Support Group, but talking about it has helped him prepare for the future.

Advice to others

If you (or someone you know has any of the common symptoms), it is important that you seek help from a doctor as soon as possible. The earlier bladder cancer can be diagnosed, the less invasive it may be and less aggressive treatment will be needed.

The most common symptom of bladder cancer is seeing blood in your urine. It might be a small amount of bright red, it could be darker red or even brown.

Other common symptoms which may indicate bladder are:

• need to urinate on a more frequent basis
• sudden urges to urinate
• a burning sensation when passing urine

Bear in mind that theses symptoms could indicate just a urinary tract infection, but don't ignore them, it is better to get checked than to ignore them!

If you have just been diagnosed with bladder cancer the first thing to remember is that you may not have heard about before, but there are many others out there who have it and are living with it. Don't be afraid to speak out, tell others about yourself and do look for and ask for help. Cancer charities are equipped to help you in any way they can!

In my case I had a quick response from my GP surgery and was referred to a specialist within a very short space of time. Also soon after my initial diagnosis, I received a phone call from a Care Co-ordinator at the surgery offering me help about coping with the diagnosis if I needed it. I hope that other GPs are as good as this.

Update on Ian's Story - March 2024

In July 2023, I started my fourth and final round of BCG instillations. Again, I have had had no side effects so now there will be a further flexible cystoscopy. Thus, my full course of BCG instillations is complete and I am lucky enough for the treatment to have eradicated my bladder cancer so now I will only be called back at roughly 6 month intervals to check that it has not returned.

The day after the final instillation on 17^th July 2023, I had a text from Derby Hospital asking me to phone to make an appoint for a CT scan.  This had been requested in March 2023 at a flexible cystoscopy and is a check that the cancer hasn't spread beyond the bladder.  When I did get through, the appointment was made for 2 days' time on Saturday 20^th July at 11:30.  I arrived and booked in at 11:15 (after a detour round country lanes as the A38 was closed all weekend for central barrier replacement!).  Before I had had time to sit down and take my coat and watch off, I was being called and within an hour I was out and, on my way, home.

On the 29^th August, 2023, I had another 3 monthly checkup by flexible cystoscopy and again, everything was still all clear.

On 23 December 2023, I was called in for my next flexible cystoscopy and again everything was all clear.  The surgeon said that I would be called again in about 3 months and if that was all clear, then the interval would be reduced to every 6 months.  He also said that the all clear was a great Christmas present.  I did find out (in the letter from the hospital to my doctor that I have moderate BPH.  What is that? See below in next cystoscopy.

On 18^th March 2024, I had a call from the Robert Peel Hospital, Tamworth, inviting me for a flexible cystoscopy on Friday 22 March, 2024.  It is part of the same group as Burton and Derby Hospital and though I'd never been before, I went along and was well-looked after by all the staff there.  I asked the consultant what BPH was, and he explained that it is Benign Prostatic Hyperplasia, which is enlargement of the prostate through natural causes as opposed to enlargement due to prostate cancer, and that it was nothing to worry about.  It has simply been noted on my record.

Again, my result was that everything is looking clear and well so I will now be only called back every 6 months.

 

I am still continuing to attend meetings of Burton Hospital's Bladder Cancer Support Group.  It feels good to be able to talk to new members and help them to understand more about their condition and, if they haven't done so already, to recommend that they bring along a partner or close friend so that they too can learn more from our shared experiences.

This has been a great journey for me but not everybody is as lucky.  About a year ago I met someone at a monthly music concert. He was 83, with bladder cancer and had already had to have an operation to fit a stent.  He was having some problems with that, with blood constantly present in his urine.  I think that he felt better being able to talk to someone who had had bladder cancer and understood about it.  Unfortunately, he lost his wife in October 2023, though not unexpectedly as she had been ill for several years with him having to care for her.  However, she began to weaken, and he had had to have her admitted to a care home just 3 weeks before she died. 

I last saw him just before Christmas when he told me that it had been agreed that he would be admitted in the second week of January for further operation/s, that because of his age and overall health, they had reservations about his survival of the operation to explore why his stent was causing problems.  I sadly learnt in early March 2024 that he had survived the operation but unfortunately died 3 to 4 weeks after it.  I hope that I gave him some support during my time knowing him.  I feel I must have because during the last 4 music evenings, he chose to sit with my wife and I, even though I know that he knew other people there.

 

Advice for other people diagnosed with Bladder Cancer

If there is a chance for you to join a bladder cancer support group, please do!  Through the one I have joined (organised by the University Hospitals of Derby and Burton (UHDB), I have found that
1) people have totally individual experiences of how they first realised that something was not right.

2) People with bladder cancer suffer from different symptoms so it is difficult to lay down any statements which would apply to everybody.

3) There is a wide range to the side effects of BCG treatment that people have suffered from only one case of water infection from me to someone who had to be withdrawn from it before the first round of 6 infusions was completed due to adverse reactions and another who has rheumatoid arthritis and the treatment seemed to cause nodules to appear on various parts of his body

4) You can learn about other treatments such as Gemcitabine-Docetaxel or the use of the chemotherapy drug mitomycin C which is heated and circulated within the bladder during treatment (HIVEC), which might be available

 

If you cannot join a support group, do make sure that you discuss your worries either (preferably) with your nursing staff or by contacting groups such as Macmillan, Action Bladder Cancer UK, Bladder Cancer Advocacy Network, Fight Bladder Cancer, and The Urology Foundation