What I wish I’d been told when I was diagnosed at stage 4

Bowel Cancer UK have asked me to write a blog for World Metastatic Colorectal Cancer Day around what I wish I'd been told when I was diagnosed at stage 4.

I feel I should start by clarifying that "metastatic" cancer is known by several terms and that in itself can cause confusion. It's also called "stage 4" and "advanced" cancer. They all mean the same thing for us – that the cancer has spread to other organs in the body such as the liver or lungs.

I was diagnosed eight years ago in May 2013 with metastatic bowel cancer, the site was the recto-sigmoid junction, so it was very low down. The primary tumour was very large (20 x 6.5cm) and I had three mets in my liver and eight across both lungs, each of these were two-three cm in size. I was very lucky in that I had successful anterior resection which removed the primary without need for a stoma, and my intense chemo of Folfiri plus bevacizumab was incredibly effective and got rid of most of my mets. Since then I've been on maintenance chemo of capcitabine and bevacizumab which has been so successful at controlling things that I've had clear scans for the past two years. I've been so lucky to have a great surgeon and oncologist, and that the cancer responded so well to my chemo.

Based on my personal experience, and what I've seen over the past several years offering support to fellow patients as they face a metastatic colorectal cancer diagnosis, these are the key points that I hope are helpful:

1. Accept your diagnosis

It can be tempting to spend time looking at why you have this disease, trying to find out what caused it, but in many cases it will never be known, and significantly it won't affect your treatment plan.

Therefore, I suggest trying to focus on getting the most from your treatment. Instead of thinking "why me", try "how can I make the most out of my life".

2. Take it one step at a time

In the early days it can feel daunting to look at an uncertain future, I found it better to take it in bite-sized chunks. I focussed my energy on the next couple of things that are going to happen like getting ready for surgery etc. These were the things that I could influence and that helped my long-term outlook too.

It can be good to have long-term aims like a five-year survival, so long as that's kept as a long term ambition and not something to get hung up on.

3. Welcome your chemo, it's your friend

If you have metastatic colorectal cancer, it's highly likely that you will be on chemotherapy at some point, for the purposes of this blog I'll include newer treatments like biologicals and immunotherapy under the broad term "chemo".

For most of us chemo can feel a bit scary, I know I'd heard lots of stories that made me very nervous ahead of my first round of treatment, so much so that I made myself ill and in many ways that first cycle was the hardest one for that reason.

I soon realised that it was there to help me, that it's MY chemo. Seeing my chemo as my friend and ally made the treatments a far better experience and my oncology team think it led to better results too!

Picture your chemo in a way that works for you – it could be your army fighting for you, your friend to lean on, or your own personal superhero!

4. Don't get freaked by statistics and prognosis

At some point it's inevitable that you will read survival stats or be told your potential prognosis, but it's important to know that no-one knows how long you will live for. There are no statistics on YOU, they are based on everyone with a similar diagnosis including all ages and regardless of any other health conditions. You are your own personal statistic.

It's similar for the prognosis. If your doctor tells you your prognosis it's important to remember that it's not an exact science, it's an educated guess. And your doctor will be delighted when you beat that prognosis and prove them wrong. As an example, I was told it was hard to see beyond 12-18 months, and that was after I'd had such a good response to chemo. At my last meeting with my oncologist I said that I was targeting 10 years, he replied "and beyond"!

5. Talk about it

Dealing with cancer can feel like a lonely experience but it doesn't have to be. I came to realise that my friends and family wanted to help but they needed to know what I needed, and that was up to me.

Don't be afraid to ask for help, but if you don't feel comfortable talking to friends then there are safe and secure groups where you can talk to fellow patients, Bowel Cancer UK has a great online forum and a growing stage 4 Facebook group.

6. Don't forget to have fun

It's so easy to lose ourselves in this whole cancer thing that we can forget who we are. It's really important to do things that make us laugh and smile, this can be a great tonic in itself!

I really hope this blog has been helpful, I'll leave you with this thought:

A diagnosis of metastatic colorectal cancer doesn't have to mean the end of your life, it can be the reason to start living it.

Steve is a volunteer with Bowel Cancer UK, Cancer Research UK, Bowel Cancer Intelligence UK and is patient representative to a number of clinical studies. In addition, Steve set up a campaign which aims to give hope to others with a stage 4 diagnosis: www.striveforfive.org