patients Stories

Beverley’s Story

My name is Bev Williams, I am 44 and I have cancer. I never thought that I would need to write that sentence, especially as the cancer that I have is so rare that it affects less than one in a million people who have cancer. It has a tongue twister of a name: epithelioid hemangioendothelioma or EHE for short.

The path to my diagnosis began in the summer of 2014, when I finally saw my GP about the stomach aches I’d been having for around 6 years. They happened so rarely, that I hadn’t thought they could be anything serious. An attack in 2014 had lasted longer than usual though and the GP suggested a stomach ulcer. When the relevant medication didn’t help I was sent for an ultra sound scan to check for gall stones.

The scan appointment was in early September and I was in a cheerful mood as I drove there. The sun was shining and I was full of plans for the future: I was due to get married in 2015; my youngest son was about to start his first year in University and as a teacher, I was thinking of the new term ahead.  It was to be the last time that I felt truly happy and at peace. The ultra sound revealed three tumours in my liver. The radiographer wouldn’t tell me what she’d seen, but I knew that something was wrong as the scan took almost an hour and she admitted there were no gall stones. I won’t detail every appointment that followed, but over the next few months I had CT and MRI scans as well as a biopsy. I didn’t see any consultants until almost at the end and at no point did anyone make any suggestions as to what they might be. I was later to discover, after requesting my notes, that right from the beginning it was suspected to be secondary cancer.

The uncertainty of that period nearly broke me. I read everything that I could about liver tumours and could have spoken at length about many different kinds. I could not however have told you anything about EHE. Is it because it never came up in my frantic Googling, or is it that I would have discounted it due to its rarity? I don’t know, I just know that when it was finally mentioned, it came as a complete bolt from the blue. In late November, I finally saw a consultant who was to draw together all the results from the various tests. I was completely terror stricken as I sat in the hospital and steeled myself for bad news. The three hour wait did nothing to calm my nerves, so imagine my relief when he told me that whilst they didn’t know what I had, it wasn’t cancer. There was no indication of cancer in the biopsy and he said that I looked and felt too well for it to be anything serious. He would refer me to a Liver Unit as a precaution, but he wasn’t concerned. I walked out on wobbly knees, had a bit of a cry in relief and thanked my lucky stars.

Life returned to normal for approximately a week, when I received an appointment for another CT scan through the post. I contacted the hospital and was told that the Liver Unit had requested it. I then contacted the Liver Unit, but could only speak to a secretary who wouldn’t say much, only that it was probably procedure. I asked that the consultant who had requested it contact me, as I wanted to know why I needed another one, but was told that whilst she was willing to ask, it wasn’t normal procedure. I felt very uneasy about this, but attended the scan at the beginning of December. When I hadn’t heard anything by December 20th, I tentatively began to think that perhaps everything was alright. I still hadn’t spoken to the Liver consultant, so after much trawling of the internet, found his e-mail address and dropped him a line. He rang on December 23rd and told me I had EHE and needed two liver resections. When I asked if it was cancer, he said that it wasn’t but if left it would become cancerous. He told me he’d see me in January and we’d discuss it further then. Straight after the call I searched the internet for any information, only to find that it was cancer after all. I have no idea why he didn’t say it was cancer; perhaps he didn’t know or didn’t want to tell me over the phone. My world fell apart and everything seemed to be spiralling out of my control. Cancer? How could that be? I felt so well and looked so healthy!

The next week or so was a blur. I waited until after Christmas to tell friends and family. It was hardest telling my then 18 and 20 year old sons. My eldest son has high functioning autism and I knew that it would hit him particularly hard. It’s a horrible moment when you see the faces of those that love you, dropping at the news. I felt so guilty for bringing this thing into their lives and all its associated worry. Everyone had so many questions, but I couldn’t answer them. There was so little information available on EHE and much of that was contradictory. I felt I’d been abandoned by the consultant, left to find out everything by myself. It was at this point that I came across a Facebook group, which proved to be the best source of information and advice available anywhere. I cannot express how grateful I was and am for the help and support of the members of that group, both during that initial horrendous period and every day since. Just knowing that there were others in the same position as me made me feel less lonely. There was more knowledge and experience in that single group than on the entire rest of the internet.

This year I have had 2 liver resections, one in January and the second in April. I was very ill after the first operation, unfortunately developing blood clots on my lungs, proving allergic to a number of medications and suffering extreme swelling. I went from being someone who was always healthy and active, to being someone who couldn’t even dress themselves. I eventually improved after a few months, with the support of district nurses, but then had to face it all again. Much to my relief, the second operation was far less complicated and my recovery far easier. The operations site is still painful and my stomach is lopsided, due to all the muscles and nerves being cut open twice. The scar is huge, just like a shark bite! Unfortunately there is a high chance of recurrence and I also have some suspect nodules in my lungs. My future is uncertain and will be filled with scans and appointments. Most difficult has been the lack of knowledge on the part of the doctors. When you are seriously ill you want a medical professional to take charge and explain the treatment options available. This does not happen with EHE, as they simply don’t know. There are so few studies and no trials and I have found that they are not very open to suggestion. It is regularly the case that I know more about EHE than the doctors responsible for my care do.  Matters are further complicated by the fact that there are only a couple of experts in EHE and they are based in London, whilst I live in Wales. This has made it almost impossible for me to be seen on the NHS in London, so I have had to pay a great deal of money just to see someone with experience in treating the disease.

Whilst the operations have proved physically tough, the mental battle is far worse. Every day is filled with uncertainty and fear for the future. I have shied away from attending support groups, as no one there will have EHE. I joined a support forum early on and whilst the people there were lovely and supportive, they tended to stick together in groups, according to which cancer they had. They spoke of research and treatments, but none were relevant to me and it only served to highlight how alone I really was.

I believe that there are many people who have EHE who are misdiagnosed and that the numbers of people who have it are higher than figures suggest. Those who are newly diagnosed are regularly joining the Facebook group, looking for support and information. Recently, both in the UK and the USA, some fantastic members have determined to set up EHE Charities and work towards fundraising, to enable more research into the disease. There is a very real possibility that it could be managed as a chronic condition and that we could live with it rather than die from it. Without research that will never happen.