Mo Haque, 35 from London
I was diagnosed with stage four bowel cancer in December 2014 shortly before my 32nd birthday.
The summer previous to my diagnosis, I was experiencing abdominal pain – naturally it came and went, but it was only when it got so severe it was painful to breathe deeply that I went to A&E. They took blood tests, which confirmed I was anemic. They carried out an ECG and chest X-ray. I was prescribed antibiotics for the pain and iron tablets for the anemia. My dad had bowel cancer and so I mentioned this to them, and because of this they said they would need to book me in for a colonoscopy.
I was referred for a colonoscopy, but had to wait six weeks. During that time, I went back and forth to the GP and hospital for further tests and pain relief medication.
On the 6 December, I had a colonoscopy but due to inflammation, they couldn’t perform the test so instead I was referred for an emergency CT scan. I was told it could be Crohn’s or cancer. Five days later, my consultant confirmed it was cancer. A week on, I was told it was inoperable but I could have chemotherapy to extend my life and if that shrunk the tumour then surgery was a possibility.
One year on from the treatment being on pause, I am grateful that the most recent scan continues to show stable disease, with a couple of nodes reducing further in size.
On the 24 December, four days after my 32nd birthday, I started chemotherapy. I had six cycles over 12 weeks. In March 2015, it came to an end and I was pleased that it did shrink the tumour. I had surgery, where they removed part of my stomach as the cancer had spread there and my colon, leaving me with an ileostomy. I then had mop up chemo for a further three months. I thought I was well at this point and started to return back to work slowly.
In September I had a CT scan, which revealed that whilst I was having mop up chemo, that the cancer had spread to my lymph nodes. In the lead up to this, I was positively tested for Lynch syndrome.
My oncologist checked with the Royal Marsden whether they could offer me immunotherapy, but they were unable to. I was then put on a second line chemo for a further six cycles taking me up to December 2015.
My oncologist said at the CT scan that I had run out of NHS options. I was then referred to Harley Street for a clinical trial but I wasn’t eligible.
Immunotherapy wasn’t available on the NHS for my cancer. But because of my Lynch syndrome my oncologist thought I was a good candidate for it and applied for an individual treatment request on my behalf. It took a few months to hear back and so I waited but I was declined for this too.
Immunotherapy privately is extremely expensive, I remember my oncologist saying that you have to be a millionaire to afford that. I’m not!
I was told it could be Crohn’s or cancer. Five days later, my consultant confirmed it was cancer.
In the meantime, my tumour was still growing and so I had radiation on one of my lymph nodes in my neck on the NHS. The others were too dangerous to radiate.
My only option was raising the money to have immunotherapy. We worked out how much we needed and it was £200,000. We raised £60,000 in a month and in two months raised £100,000 – this meant I had enough money to start immunotherapy, which I did in June 2016. I had to pay £7,000 per cycle which was every three weeks. I had 16 cycles in the space of one year.
The fundraising slowed down but we reached £190,000 in a year. I had scans every four cycles, which showed significant reduction. A year later the treatment paused but I was regularly monitored, and I was pleased to hear that throughout all my scans the tumour was stable, although it had not totally eradicated it.
The side effects from the immunotherapy are different from chemotherapy, but can be awful. The treatment is designed to activate T cells and stimulate the immune system and so I now have auto-immune conditions such as severe arthritis, Ulcerative Colitis and Vitiligo.
One year on from the treatment being on pause, I am grateful that the most recent scan continues to show stable disease, with a couple of nodes reducing further in size. It is very surreal, as in May 2016 I was raising money to give myself a chance to save my life, and now two years on I have published my book Choosing To Stay. I share my story through the choices I made together with the nine biggest lessons I’ve learned from the cancer experience.
But we’re improving access to treatment and care for advanced bowel cancer
Nearly 10,000 people in the UK are diagnosed with advanced bowel cancer each year. This is when the cancer has spread to somewhere else in the body, such as the liver or lungs. People with advanced bowel cancer typically have poorer outcomes but access to surgery and drugs can help to extend life and can sometimes be curative.
We are determined to improve survival rates and support for people with advanced bowel cancer. We want to see improved access to high-quality treatment to ensure longer survival and a better quality of life for people, including:
- Increasing survival rates and improving holistic support for patients and their families
- Reducing inequalities in access to potential life-saving liver surgery
- Improving access to cancer drugs based on clinical need and not postcode
- Providing better communications and support for people with palliative and end of life care needs