Bobbi was diagnosed with HR NMIBC, T1 G2 when she was 42. She has had BCG immunotherapy treatment and two TURBTs (the second for a smaller tumour).
I am a 45-year-old nurse, who is married with one daughter. My cancer journey started in February 2022 with a UTI when I was aged 42. I had never had a UTI before, so I assumed it was part of an early menopause as I had had some symptoms for that. I had some other symptoms, but I had been able to explain them away. I had felt really tired and couldn’t get round my normal dog walk without stopping. However, I had low Vitamin D the year before and thought it was just a repeat of that. I had also had lower back pain, but I had changed my job and was driving a lot more so just thought it related to that. I had several courses of different oral antibiotics, but none seemed to clear the infection. I didn’t know that the antibiotics not working was a symptom of bladder cancer. I kept going back to the doctors with more samples.
In June after dropping off yet another sample my doctor messaged to say I had had a lot of antibiotics and that I should come in for a review. At the review she asked if I had had any blood in my urine. Up until that point I hadn’t but the week before I had cola coloured urine. She sent me for an ultrasound scan the following week. My GP rang me with 2 days to say they had seen something on it and thought it could be a polyp/lesion. However, they were going to put me on the cancer fast track pathway. The consultant rang me the following week and said it was likely a lesion due to my age. He advised that I needed a cystoscopy to be completely sure.
The cystoscopy was the following week. I was so anxious going in for the procedure. The screen was at the end of the bed, and I could see straight away a mushroom/coral shape in the bladder. I wasn’t sure if the doctor said cancer at that point, but he said it wasn’t good. I was sent straight up to pre-op for bloods and observations to be taken. Six days later I went for my first TURBT. The surgeon’s first words were “you’ve got a big tumour,” which really scared me going into the operation. However, I got through the surgery with no problems. I had to stay in hospital overnight to have a catheter and a bladder flush out. I was discharged home at lunchtime the next day. Two weeks later I got the results. The tumour was 3-4cm and was a T1 g2.
Following the surgery, I had six weeks to recover then I started the first six weekly sessions of BCG. I had a UTI going into the first session, so it was delayed by two weeks. After that I managed the next five each week with no interruptions. I had flu-like symptoms which have increased as I have gone along. Following the six BCG’s, I had another TURBT with biopsies (Jan 23) which came back as clear. Then I had another three BCGs followed by a cystoscopy. This showed a small 0.4mm tumour. Again, I had a TURBT for it to be removed. Initially I was going to have 15 BCG treatments, but after the reoccurrence my consultant changed that to eighteen. The treatments got stronger with each treatment that I had. In a run of three treatments the first would be fine then the next two would be difficult. I finished the 18 BCG in November 2024 have been NED since (no evidence of disease). The first cystoscopy following the BCG showed some redness, so I had a TURBT with biopsies. However, when checked everything looked ok and no biopsies were needed. Since then, I have moved to 6 months check-ups.
Regarding some tips for anyone undergoing BCG, this mainly gives me flu symptoms and irritated my bladder, so I make sure there is a toilet nearby. After my BCG, I make sure I stay at home for the day. I stocked up on drinks, bleach (for the toilet), paracetamol, and snacks - you have got to have a treat!! I still worked through treatment but just adjusted my role for a few weeks post treatment while my bladder settled. I have found the more treatments I had, the stronger they get, but the effects just last a day, and I find paracetamol and sleeping off the effects helps me.
It is a definite rollercoaster, but I have been very thankful for an excellent team looking after me and amazing family and friends. If I were to give any advice to people starting on their bladder cancer journey, I would say ask as many questions as you can. Do your research, if and when you are ready.
There are amazing charities such as Action Bladder Cancer UK which can offer lots of helpful information. Also talking to others really helped me, and I attend a local support group (the group was set up by ABC UK, and I have since taken over the running of). As the cystoscopy date nears, I start to worry and get “scanxiety!” I am learning/trying not to worry as much about these now as I know I have support whatever the scan result.
Bobbi also volunteers her time for ABC UK as part of our patient network, has spoken at our Nurse Education events, and runs a support group.
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