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 bladder cancer.
If you would like to tell your story please do get in touch with us by email at email@example.com
We can arrange for one of our Patient Support Officers 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.
My Story, by Scott, aged 40 - NMIBC grade 3pTa later upgraded to NMIBC CIS
If you are reading this I thank you for taking the time to have an interest in my story. At the time of writing this I am forty years of age with my loving family to support me, my son aged 12 and my partner with whom I celebrate 16 years together this year. I was diagnosed with an aggressive non muscle invasive bladder cancer in March 2020 and despite my diagnosis I am currently confident that my life has changed for the better. I feel optimistic and healthy enough to fight off my cancer which was diagnosed early and has not spread to any other part of my body.
You only get one body in this life so pay attention to it and what it is telling you. Don't be afraid to get anything checked by the doctors. Bladder Cancer is not something I knew of until I was officially diagnosed with it at a hospital clinic appointment on Friday 13th March 2020 (of all days), and it's funny because as the more people I speak to the more I hear the same thing over and over, that awareness of this form of cancer is lacking.
Why is awareness a problem? I hear you ask. It is a problem because early diagnosis like all cancers is key to successful treatment and survival. To achieve an early diagnosis you have to be aware of your body and know what signs to look for. In terms of Bladder Cancer, the tell tale sign is urinating blood. So pay attention to your urine people, it may just save your life. The medical term for this is haematuria if you fancy doing some research.
I am a lorry driver and it was February 2020 when I went to the bathroom at home having just finished my second nightshift of the week and was shocked to look down and see that my urine was deep dark burgundy in colour. I was not in any pain but something told me squarely that this wasn't right. Luckily I had the quick thinking and foresight to keep a sample of my urine that morning and swiftly arranged to see the doctor.
At the surgery I duly handed my sample in to the nurse practitioner and waited for the surgery to come back to me with the results a day later. When they came back to me I was informed by the nurse practitioner that it was a simple urine infection and prescribed antibiotics. However for whatever reason at this point I insisted that I wanted a consultation with the doctor face to face, (looking back now I'm glad I insisted). A week later I was back to see the doctor for a face to face consultation and all of the usual potential reasons were covered in our discussion such as kidney stones, urine infection, etc, however this consultation resulted in a referral to the hospital for a cystoscopy and a bladder ultrasound to be sure of what was going on.
I went for my cystoscopy and bladder ultrasound, which was scheduled for a week later and here is when it started to get interesting, (if that's the right choice of words). The doctor at the hospital noticed something abnormal in my bladder and less than a week later from my cystoscopy and bladder ultrasound I was back in hospital for (a) a pre operation appointment and (b) bladder resection day surgery.
Two weeks on from this my results were shared with me on Friday 13th March 2020 at an outpatients clinic in the hospital and this was when I was told the news that they discovered and removed an aggressive non muscle invasive cancerous tumour of 4mm from my bladder. The abnormal 4mm tumour they had removed during the day surgery was sent to the laboratory for biopsy and has been identified as cancerous and was staged and graded as NMIBC grade 3pTa.
Further to this outpatient's clinic I was back in the hospital two weeks later for a second bladder resection day surgery, (which is the standard procedure) and the results were upgraded. My original diagnosis of NMIBC grade 3pTa had now developed into NMIBC Carcinoma in Situ or CIS.
So if you pee blood, please get it checked. Even if you only pee blood once!!
After having had time to overcome the initial shock of my diagnosis, I am coming to the end of my six week course of bladder chemotherapy, having previously had my two bladder resection surgeries (called TURBT's Trans Urethral Resection of Bladder Tumour), a CT scan of the abdomen and an X-ray of the chest. I have been fortunate that in spite of COVID 19 my treatments were still able to go ahead and I am really grateful that this has been the case because I know that there are many people out there who have not been so fortunate in these unique circumstances and my heart and love goes out to those people. Following my two surgeries, (which are done under general anaesthetic), my initial ongoing treatment programme, although still able to go ahead, has been altered slightly in two ways.
1. Firstly, I have received a different form of treatment, chemotherapy instead of immunotherapy.
- Someone with a diagnosis like mine would normally receive a form of intravesical immunotherapy (intravesical means directly into your bladder instead of by mouth or injection) with a drug called BCG carried out over a six week period following the initial surgeries and scans. BCG, or Bacillus Calmette-Guerin, is an immunotherapy drug and is made from bacteria related to the organism that causes human tuberculosis and works by causing an immune response in the body. As a result this treatment impairs the immune system which is why I did not receive this treatment in light of COVID 19.My treatment, in light of the COVID 19 pandemic was a six week course of HIVEC (Hyperthermic IntraVEsical Chemotherapy), using a drug called Mytomycin C heated to 43 degrees celcius. The drug, once heated feels similar to a warm bath and is circulated around the bladder for one hour. This differs from the BCG treatment as it doesn't impair your immune system response whereas the BCG immunotherapy treatment does.
2. Secondly, my follow-up cystoscopy following my chemotherapy is scheduled for three months later instead of six weeks later.
Ultimately, I have still received an initial six week course of intravesical treatments. However as a result of the COVID 19 pandemic my treatments were changed from an immunotherapy treatment to a chemotherapy treatment. This change to my treatment has meant that I am being treated with what can be considered a less effective drug; however as a result of the different treatment my immune system response is not being impaired at a time when it is crucial.
It is worrying that my chemotherapy treatment may be less effective than the standard immunotherapy treatment provided; however, I am hopeful that my quick thinking about getting my blood laced urine checked has allowed my diagnosis to come early enough for successful treatment and because of my experience I am highly motivated to raise awareness of this form of the disease.
To facilitate raising awareness I have recently set up a blog page on facebook which can be found at the following address, www.facebook.com/mightymousesix, where I share information about this form of cancer and am actively involved in supporting Action Bladder Cancer UK through fundraising activities. I thank you for taking the time to read my story which means a lot to me and I urge you to look after your body and pay attention to it.
Scott - May 2020