Ben Kouijzer’s fight to survive MPNST

Last summer I was diagnosed with a very rare and aggressive type of cancer called MPNST (malignant peripheral nerve sheath tumour).

I underwent what was deemed to be a successful surgery followed by 6 weeks of radiotherapy - to minimise the chance of the cancer coming back.

A few weeks ago my fiancé Lotte and I said how grateful we were that I had my run in with cancer last year, rather than now, amidst the very frightening times of Covid-19.

Fast forward a month (the day after my 36th birthday) and a routine follow up X-ray, followed by a CT scan, showed multiple tumours in each lung, my cancer had (as MPNST so often does), metastasised to my lungs.

Lung cancer is the leading cause of cancer death worldwide. Each year, more people die of lung cancer than of colon, breast, and prostate cancers combined.

One of the first things my doctors said was that they were very sorry, but this wasn’t going to be something they’d be able to cure, and that eventually “the cancer would kill me”.

Last summers diagnosis felt like a nuclear explosion in my heart. I can’t even begin to describe how the most recent diagnosis made me feel.

Lotte and I drove home from the hospital and plucked up the courage to call mum, my brother and his partner to let them know. We wanted more than anything to be together, to hug each other and make it all ok, but due to Covid-19 we couldn’t.

It took some time, but eventually we came to the conclusion that, I am simply too young to accept this prognosis, and I will not give up.

We immediately began an ongoing process of researching every possible thing that I could do (conventional and integrative) to change the course of history I found myself on. We had what felt like daily Zoom consultations with practitioners around the world - discussing different treatments, arranging tests, ordering supplements, radically changing diet, speaking to therapists, embracing meditation and breathwork, taking in as much information as we could and trying to make sense of it all.

Many of our friends and colleagues connected us to specialists around the world who out of the goodness of their hearts, spoke to us (some for hours at a time) offering their perspective on my situation and what could be done.

MPNST is a very difficult cancer to treat - it is widely regarded as being “non-chemosensitive”, effectively this means that traditional chemotherapy doesn't work.

The NHS suggested that I have surgery (one lung at a time) to remove as much of the cancer as they can. As I share this I am recovering well from my first surgery.

The NHS propose to follow up surgery with chemotherapy to “manage the disease” (or in other words, buy some time). We are embracing surgery with open arms and feel fortunate to have an amazing surgeon within the NHS, but bog standard chemo that isn’t likely to work just doesn’t feel good enough for a long term outcome.

We are more hopeful than that. There are other forms of treatment, targeted therapies and immunotherapies that can in some cases have better outcomes that we want to explore after surgery. Eligibility for these depends on certain genetic mutations which need to be tested for using expensive molecular testing and DNA sequencing, something that is not available as standard through the NHS. If I have certain genetic mutations, I might be eligible for some of these more promising treatments, and maybe even beat this thing!

Whilst I’m not turning my back on the NHS who have been in so many ways amazing up until this point - we need to form the right team of people, do the necessary testing and create an individualised treatment plan for me, no matter what or where in the world this takes place.

I just don’t have the financial resources to do all of this alone.

I realise this is probably the worst time ever to be fundraising. Not just because the financial implications of COVID-19 are hitting everybody hard, but also because there are so many other important causes out there that need your help.

Why donate to me rather than the NHS, or one of the many COVID relief efforts? Why do I deserve money from anybody when there are hundreds of thousands of people suffering around the world? What makes me so special? Honestly these are all questions I’ve been going over again and again in my mind.

But I have to ask. If I don’t ask, you won’t know that I need help.

Following the encouragement of close friends and family, I have created this Gofundme page where you can give as much or as little as you feel able.

Your donations will help me to fund the molecular testing and consultations with specialists who are using forward thinking treatments to help people like me have better outcomes. The molecular testing is likely to cost £20,000 and I will also need to take an extensive list of supplements and medications. We are grateful to have found, and be communicating with someone with a very similar diagnosis to me who is successfully shrinking her tumours using a non-toxic supplement and medication protocol that would cost around £1,500 pcm.

So for my molecular testing, the guidance of these specialists and for a year’s worth of the current supplement & medication protocol, I’m looking to raise £50,000. If targeted treatments do become an option as well, this can cost a lot more and at the moment I’m unsure as to quite how much.

I appreciate these are big numbers and this is going to be a big challenge, but the advice we’ve had from people who’ve been in a similar position to me is “whatever you do, don’t let money be a barrier to getting the right treatment.”

I appreciate that not everybody is in a position to donate money, but there may be other ways you can help me, even just sharing my story, incase somebody that you know is in a position to help?

These have been the most challenging weeks of my life and I am so grateful for all of the support I’ve had from friends, family and colleagues so far. I cry every day due to the acts of kindness.

Thanks for taking time to read my story.

Ben x