Leon's story

March 3, 2022
Leon from the Netherlands

Leon's story

I would like to share my story so that people can better understand what it is like to contract and get treated for colorectal cancer and to encourage anybody who has any symptoms whatsoever to go and seek the advice of their doctors – waiting is not an option

Hello, my name is Leon. I’m 45 and I live in Tilburg in the Netherlands close to the Belgian border. I work for Stichting Darmkanker (Colon Cancer Foundation) as a patient advocate and I am a part of their Patient Participation in Research Group. I would like to share my story so that people can better understand what it is like to contract and get treated for colorectal cancer and to encourage anybody who has any symptoms whatsoever to go and seek the advice of their doctors – waiting is not an option. For young people this is a very important point because when you’re younger cancers are usually more aggressive.

I was diagnosed with colorectal cancer in April 2020 and for me, because of excellent healthcare practitioners, I’m grateful to be sharing my story with you and to be getting stronger every day since my treatment.

About my symptoms
The story begins when I had stomach cramps, increasingly frequent restroom visits and a little bit of blood in my stool, and I went to the doctor to investigate. This was the time of the first COVID-19 lock down and my colonoscopy got postponed twice. When I said though that I had lost 10 kilograms my doctor put more pressure on the hospital to get the procedure done and I eventually had it in April – on my birthday! Here I got the immediate and shocking news that I had colorectal cancer and following a computed tomography (CT) scan of my abdomen I was told it was an advanced tumour that was possibly growing into my prostate and the organs next to it.

Tough News for Surgery – a Possible Double Ostomy
I was then referred to a university clinic. The oncologist there told me that I would probably need a total pelvic exenteration – a surgical procedure to remove organs from the gastrointestinal, gynecological or urological and urinary systems. This was shocking news of course. Not only would I have to live a life without all these internal organs, but I would also have to have two ostomies – one for the colon and one for the urinary tract.

Before the surgery though, to try and reduce the size of the tumour I started on chemo and radiation therapy, but sadly it didn’t have a lot of effect. At this point, knowing about the possible outcomes of surgery, I sought a second opinion. Here, they told me that the cancer treatment guidelines had changed for advanced non-metastatic disease. They recommended we try six cycles of three weekly chemotherapy to reduce the tumour size.

A Marriage Within the Turmoil
In amidst of all this, my now wife and I got married, I had proposed to her before I was diagnosed, and the wedding was a moment of respite and joy – something that helped me through.

With the hope that it would make a difference, shortly after the wedding, I went in for the recommended systematic chemotherapy, but alas it had little effect. So, about a year after my initial diagnosis, with my newlywed wife supporting me, I went into surgery ready to come out the other side with two ostomies. When I woke, to my huge relief there was only one! My surgeon, to whom I am eternally grateful was able to save my bladder and my prostate while reporting a full removal of the primary tumour. And now, since the surgery, I have been in recovery and my scans and blood work is all looking good and as it should.

Advice for Those Facing the Same Thing
I would like to share the following with people that may have to go through similar experience:

  • Educate yourself – don’t stop asking about what is happening to you and don’t stop informing yourself. Contact your local patient organisation and find out about where you can find reliable information and read up about what is happening to you.
  • Get different opinions – although my second opinion didn’t change the outcome, it did give surety about the decisions I was making and affirm that the treatment being subscribed was the best one for me.
  • Only take your life with cancer one step at a time – if you look too far ahead you worry too much about the future.
  • Try your hardest to remain positive – but know that all your emotions are normal human reactions and that despite the hard times life does go on.

In conclusion I want to say that this time with cancer has taught me a lot about life and has given me insights and momentum about the importance of living life and enjoying the ‘now’. I want to always keep this with me as this has been a very valuable lesson. I also want to acknowledge my huge respect for our healthcare system and the people in it – without them I wouldn’t be here to tell my story.

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