Harry's story

October 24, 2022

Harry's story

Diagnosed with incurable oesophageal cancer, I almost lost all hope. After hearing the diagnosis, I walked home thinking, ‘this is it; there is nothing anymore. I will die.’ Susanne gave me hope and believe that this was a game-changer for me. After talking with Susanne, I realised there were things we could do to extend my life or find a cure. This gave me the mental boost I needed, and this is what I wish for everyone in a similar situation.

Hi, my name is Harry Verbunt. I am 58 years old, and live in Den Bosch, in the Netherlands. I am married to my wife, Ida, and a loving father to Tristan and Elise. On April 7, 2022, I heard the words, “your cancer is back”. Metastatic oesophageal cancer. Late-stage. Incurable. This moment felt like the ground had disappeared under my feet. I was lucky to get access to an early-phase trial. Now, three months after the second cancer diagnosis, I am tumour free.

I want to share my story to encourage and empower anybody who has been diagnosed with a complex, and late-stage tumour to:

  • Ask for an expert opinion.
  • Be aware of how important it is to be treated in an academic hospital specialised in your tumour type.
  • Have people around you who help you navigate the system.

I want to help others in a similar situation by sharing my story. Hopefully, my story will allow more patients to access genetic sequencing, personalised treatments, and trials early. It’s a challenging journey; only a few can navigate this landscape. That’s why we need to unite patient experiences from patients with similar cases from multiple countries to improve treatment access.  It is my mission to make the impossible possible. I want to transform my deadly tumour into a chronic condition. For people reading this story, please feel free to reach out to me so we can unite in this mission.

The first time I heard, ‘You have cancer.’

On May 27, 2021, I went to the hospital for something that was bothering me for several weeks. I had some problems with swallowing food. At first, my GP told me it could be stress related, but I wasn’t experiencing any stress at that time. After a few weeks, and another visit to my GP, he thought it would be best to consult with a throat specialist. I went with my daughter, Elise, to the hospital, with the expectation that I would get some medicine and the problem would be over. At that time, I was super fit and trained every day for at least half an hour on my Tacx (indoor race biking). I was making healthy eating and drinking choices, as Covid was all around, and I wanted to be in good shape.

I didn’t expect any bad news – definitely not the information I received. After the examination, the specialist looked at me and said he knew the problem. Oesophagus cancer; a tumour about six centimetres. After those words, I couldn’t believe what I had heard and asked him if he was joking. Of course, he was not kidding, but I couldn’t believe it. Elise was calm, but tears were down her cheeks, and she asked how bad it was, and if it could be cured. All good questions, but he couldn’t answer them. After this diagnosis, we went home, where my wife Ida was waiting. She asked how it was, and I couldn’t stop the tears. We held each other and cried for some minutes with the three of us. My son Tristan came home the next day. He was devastated.

First, they told me that it was curative. They planned radiation and chemo. That seemed to be working fine, and month of July, I was busy with the treatments. In August, the specialist concluded that an operation was also necessary. 2/3 of my oesophagus and 2/3 of my stomach were to be removed. The operation took place on October 5, 2021. I worked hard and very positively on my recovery.

Unexpected turn: no treatments anymore

On March 2022, a piece of food was suddenly stuck in my oesophagus and had to be removed at the hospital. They took a CT scan and saw that my cancer was back. Metastatic cancer. Immediately, my diagnosis was palliative with a life expectancy of 1 – 3 years… I could only think, ‘this is the end for me.’ The local specialist told me there were no more treatments.

Connecting dots to find a personalised treatment for my type of tumour

During my recovery in 2021, I discovered Susanne Baars, a biomedical scientist, and her Ted talk online. She inspired me to join her on her mission. Back then, I didn’t know how yet, but one day after the news, I decided to call her. I was filled with hope and belief when I was on the telephone with Susanne. She told me that it was not over yet and that many other options existed. After an hour, I was energised and reconnected with my inner strength, believing we could find a treatment.

I was lucky to know someone like Susanne Baars, who works with several oncologists who perform expert analyses with a specific focus on complex tumours. Through this ‘connection’, I was connected to Prof. Bob Pinedo, who investigated my data and discovered the HER2 protein in my tumour cells. He asked if someone had ever shared this with me, and what this could mean. My answer was no. He told me that with this specific protein, there were some targeted treatments. He advised me to switch from the general hospital to the major academic Dutch Cancer institute, an innovative, multidisciplinary centre.

Because of this protein, I gained access to a phase I trial for targeted treatment for HER2. A promising treatment already approved on the market for breast cancer. As more types of tumours, like mine, are expressing HER2, this could potentially save many more lives. The study started on June 3, 2022, and after one treatment (2 weeks), the tumour decreased by 58%! After 3.5 treatments, I was tumour free. As they believe that micro traces of the tumour are still present, I need to continue the treatment, but so far, they cannot detect anything anymore.

With Susanne, we asked one of the expert oncologists in my team, Myriam Chalabi: How do we know if we can cure Harry with this targeted HER2 treatment? “What does science need to move from life extension to finding a cure? “We don’t know”, she said. “We don’t have enough accurate world data from patients many years after receiving the treatment.

I am a dreamer, and together with Susanne Baars, we are building an intelligent network platform to match patients with a similar tumour like mine and unite best practices, experiences, life-saving information, guidance, and mental support to accelerate finding a cure. For now, we will work with oesophageal cancer patients, like me, and then we will extend this to other kinds of tumours. This platform will be launched in the first half of 2023. We need to tackle this globally to increase the chances of finding a cure and helping more patients. Any support is very welcome.

I was lucky to have had personal guidance from Susanne Baars and Professor Bob Pinedo. Those two are essential in my journey. They gave me hope, belief, and the proper navigation to get the right support.

Harry Verbunt
Ex-HPE Healthcare Lead, WW Healthcare Advisor, Loving father, Husband, Brother, Friend, and Cancer Patient

Harry wants to connect with as many people who want to join his network. They are working hard to get the website ready for launch in a few weeks, until then, anyone interested in the initiative can use this FORM to get in touch!

Human Epidermal Growth receptor 2 (HER2) is a protein involved in growth, division, repair, and survival, and is found in small amounts in all human cells. Sometimes a random change within oesophageal and gastric tumour cells can result in too many copies, or over-expression of HER2, causing the cancer cells to grow and spread into organs across the body (metastasis) and is associated with poor prognosis and overall outcomes.

HER2 is overexpressed in oesophageal and gastric cancers, making the HER2 pathway an important biomarker and therapeutic target.

Learn more about HER2 testing and treatment with newly create DiCE resources on HER2 testing and treatment:

Patient Resource – Infographic on Gastric Cancer: HER2 Testing

Checklist for HCPs – Gastric Cancer: HER2 Treatment

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