Helen's story

September 21, 2023

Helen's story

Everyone needs to be aware of the common signs and symptoms of colorectal cancer, but they also need to know their own ‘normal’ and not be afraid to keep pushing for further testing and answers when doctors don’t.  I would say this to anyone newly diagnosed with colorectal cancer – be your own advocate.

Hello, I am Helen Canning. I live in Suffolk, England, with my husband Vincent and our two daughters, Erika (6) and Marla (4).  I used to have a busy but happy life.  I was a secondary and A-level Science teacher, and Vincent was a graphic designer.  Before having children, my husband and I loved to travel to various parts of the UK and Europe during the school holidays.  Once our girls were born, we would spend weekends out as a family, being as active as possible.

When COVID hit, and we were in lockdown, I noticed I was quickly fatigued and had a dull sensation under my left hip.  Once restrictions were lifted, I visited the doctor, who concluded that I had a build-up of scar tissue from my two c-sections and needed to increase my iron intake.  Over the coming months, the fatigue worsened, but no further help or explanation was offered.

In August 2020, it was our wedding anniversary.  We had no plans until the weekend, which I was grateful for because I’d developed bad stomach cramps.  These worsened through the day, to the point that I felt I was being stabbed.  Seeing me doubled over and crying, my husband decided to take me to the emergency.  I remember being alone (there were still restrictions on visiting due to COVID-19) in the emergency room when a lovely trainee doctor and a consultant surgeon came to see me.  They explained that I would be admitted as they wanted to give me CT and MRI scans as they could not explain the pains from observations alone.

The following day, my whole world changed forever.  Despite having no family history and none of the classic symptoms or risk factors, I was told I had advanced colorectal cancer – a primary tumour in the right side of my colon, with mets on my ovaries, liver, and peritoneum.  The following months were a blur of further testing – including a biopsy of my liver, which showed I have the BRAF mutation – of new terms and phrases, chemotherapy, and having an ileostomy operation.  As far as we were concerned, my days were numbered, and my life expectancy was put at around nine months.

But I don’t give in to anything easily.  As I got used to the side effects of the chemotherapy and was able to rest, thanks to the strong support from family and friends looking after my daughters, I began to tell myself I could beat this.  With each passing progress scan, my cancer was shrinking.  I had joined some online support groups and was becoming more knowledgeable.  In August 2022, a year after the initial diagnosis, I felt well enough for Vincent and I to take a short trip to Italy, a country we love.  While there, I decided to pursue a second opinion.  Within a few weeks, my GP sent my information out; I had two well-known colorectal surgeons invite me for a consultation.  Both agreed I’d had a remarkable response to treatment (including all signs of cancer disappearing from my liver) and that I should be put forward for surgery.

On 10 January 2023, Professor Jamie Murphy performed cyto-reductive surgery, peritoneal removal, full hysterectomy, and HIPEC.  The histology report showed no nodal disease and clear margins.  I will probably need further treatment, but for now, I am enjoying a break from it all, something I never thought possible when this all started.  Since then, my strength has returned. I have become determined to help others in a similar situation to myself to seek diagnosis, ensure they have the best team behind their care, and be their own advocates to get the best possible outcomes.  A small group (initially 4 of us) of BRAF patients began chatting regularly online and decided more needed to be done to support young people living with colon cancer with the BRAF mutation.  This idea rapidly gained momentum, so we created BREAKING BRAF – a support network dedicated to showing BRAF patients that they are not alone with limited treatment options and campaigning to get more BRAF-specific drugs available in the UK.

Everyone needs to be aware of the common signs and symptoms of colorectal cancer, but they also need to know their own ‘normal’ and not be afraid to keep pushing for further testing and answers when doctors don’t.  I would say this to anyone newly diagnosed with colorectal cancer – be your own advocate. Don’t take the first opinion; seek others at every stage to ensure you’re on the proper treatment.  Accept help from family and friends, and join online and in-person support groups. You don’t have to do this alone. Know your Biomarkers and the details of your diagnosis inside out. This will help you get what you need at every stage of your journey.

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