RareCan gave me hope just when I needed it
In August 2023 I was showering ready for lunch with friends. I went to the toilet and filled it with blood. As I already have Chronic Lymphatic Leukaemia since 2006 I emailed my haematologist who wanted a photo.
He suggested if it didn’t stop within 5 days to contact my GP. It happened to be the bank holiday weekend so I rang 111. They told me to go to the out of hours Primary Care centre on Monday. The doctor there tested my urine and said there was nothing wrong!
I thankfully didn’t believe him and contacted my GP on the Tuesday, who took blood and urine samples. On the Friday, he asked me to see him urgently – it was blood – haematuria. By this time I was so weak I couldn’t walk. He saw me and sent me straight to A&E. The service was brilliant. I was triaged in an hour and admitted to the surgical assessment unit. The next morning I was transferred to the surgical ward and saw a urologist. Within 3 days I had a CT scan and a cystoscopy and bladder wash. They found a tumour in my bladder.
After 16 days on bladder wash and two blood transfusions of 6 units of blood, I was given a TURB B procedure and chose to be awake watching the surgeon scrape the bladder lining and cauterising the bleeding as well as taking biopsies of the tumour.
Fast forward a month and the biopsy report confirmed it as a rare sarcomatoid carcinoma that was muscle invasive. A week later I was told the tumour was fast growing and aggressive and would not respond to treatment but they could possibly take out my bladder to slow the disease down. I was told I had five months to live and they could not treat the cancer. Total shock. I was devastated.
In November I finally transferred to a regional cancer centre and a surgeon sent me for a pre-op assessment. It was confirmed I was too weak for surgery and would not tolerate the anaesthetic and no further treatment was offered. I was in denial and would not accept their decision.
After 4 more meetings with different oncologists I persuaded the last one to offer palliative radiotherapy. The oncologist doubted the radiotherapy would have any effect. After a second ct scan I was told the disease had spread to my pelvic lymph glands and I had metastatic disease. My radiotherapy was planned for December 18th to 28th daily except for weekends and bank holidays.
My family came over from New Zealand on 9 December to say goodbye. It was bittersweet, not expecting to see them again. I said those goodbyes on January 9th, it was incredibly emotional.
I had researched my condition and in that research I found RareCan. It gave me hope that someone might be researching this extremely rare tumour. I contacted them which was a very easy process and arranged an in-depth telephone appointment to collect details. This happened during radiotherapy before Christmas. The relief I felt was immense. Finally I had hope. I was heard and listened to.
I waited about six weeks and got a very comprehensive report listing two possible trials for solid tumours in mid January. There were seven more that required me to have genetic sequencing. I saw my haematologist who decided to treat my CLL as he believed what had been diagnosed as metastatic disease was actually CLL infiltration.
He thought my glands would reduce in size very quickly. He also gave me an infusion of ferritin as my level was so low and I was still severely anaemic. I continued to work but cut down my caseload. I began to feel much better and my energy returned.
I wrote to a professor who was head of the department asking for an appointment. He agreed to see me. I had a third ct scan and he gave me the results – the tumour had shrunk! And the lymph glands were normal and I had no metastatic disease.
He would not authorise the genetic testing as he said I did not need to be on a clinical trial. This I am still pursuing. I did question my original diagnosis and prognosis as I was very much alive and feeling fine. He said the diagnosis was made on the histology and that may possibly have been inconclusive.
I still have a bladder tumour. It is half the size of the original one. But I am still alive against the odds. And once my genetic testing is finally done I will be sending the results to RareCan to see if I am eligible for any of the seven clinical trials they identified.
Meanwhile I remain hopeful, positive and well.
Thank you for giving me hope – Never give up despite all the odds.