Supporting the

Neuroendocrine Cancer Community

Mike’s Neuroendocrine Cancer Story

Sep 28, 2018

I still feel hesitant in drawing attention to myself and the fact that I have NET cancer. However awareness is the key because if you don’t know about NET cancer how can you detect it and the sooner you do detect it the better your chances of controlling it.  

My story is I finally decided to visit the doctors in the summer of 2013 having put it off for years with the standard excuses for feeling unwell of “it’s only stomach ache, I must of eaten something”, or “it is only a bit diarrhoea” and “I’ve always flushed a bit”.

It took just over 2 years to receive a diagnosis during which time I was prescribed numerous tablets treating the different symptoms, completed rafts of tests and was told over and over again it wasn’t cancer. I even had two consultants tell me they had no idea what was wrong with me.

NET cancer hides, if you feel unwell trust your body and keep asking for help.

My case, like many others, wasn’t straight forward. My major symptoms were heavy flushing to the top half of my body and face together with soft or loose bowel movements. However it was complicated with severe pain behind my right shoulder blade every time I ate food. Everyday life wasn’t a laugh a minute at this time.

NET cancer can also cause heart problems which you need to be aware of but in my case this pain turned out to be a blocked artery in my heart resulting in a number of heart attacks and clouding the diagnosis, more about this later.

I was eventually diagnosed on the 27 July 2015 and told surgery was scheduled for the following Monday. One cancelled holiday later, I went in for keyhole surgery and woke up with a 9 inch scar across my stomach and a decent chunk of my bowel missing. 

It was whilst recovering from the cancer surgery that I had the heart attack which led to the discovery that I had a blocked artery in the heart. Two stents later and the heart was back functioning. 

In the space of three weeks a lot had happened and the day following heart surgery was another decision day; was the tumour malignant? The answer – Yes.

At this stage let’s remember that you do not go through these things alone and your family is directly impacted by this illness and its effects, they need help and support as well.

The next few months were spent in recovering from the different surgeries. It should have been a positive time, illness diagnosed, treatment completed jobs a good one, move on. However I knew something was still wrong – trust your body, if you feel you are ill then you are probably correct, get it checked and keep getting it checked.

I don’t want to criticise my health authority, the NHS do a great job, but not all authorities have the right skills in place to identify and treat NET cancer. According to their tests there was no cancer left and there was nothing more they needed to do – but I still felt ill and it wasn’t going away. Trust your body.

It was just under a year after the cancer surgery when I saw that the NET Patient Foundation was holding a conference in Manchester, I had no idea what would happen and went as much to support my wife as to get more information on this cancer. 

It was there that I met the specialists from Christie’s. They took one look at me and said they could see the cancer was still active as I sat there flushing in front of them, Professor Valle gave me his name and told me to get my doctor to refer me direct to Christie’s.

My doctor sent the referral off and within 2 months I had visited Christies several times, undergone more detailed tests and they had located a further two tumours. 

Scary news – Yes, bad news – No. I was being seen by specialists and they were providing me the treatment I needed. 

It was the start of the next stage of life with cancer and that is the important thing to remember, as with any illness it is a journey and if you take it one step at a time it becomes more manageable.

It is now over 3 years from the initial diagnosis and yes my life has changed but not as much as you would have thought. I have a daily course of tablets, a four weekly injection sometimes called a “butt dart” given the location of the injection and I adapt to how my body is feeling on a daily basis.

NET cancer doesn’t go into remission in the same way as other cancers, it will always be with me. However it is manageable and it’s the quality of life that it is important to you and your family. 

This is where organisations such as the NET Patient Foundation are at their best in supporting my wife and myself through the fears and stresses of this disease.