patients Stories

Milly's Story

I am Milly Simmie, a fit and I thought healthy 29 year old. I ran the London Marathon in 2008 and the Great South Run in 2013 and I probably did both of those with cancer. It is an extremely rare type of cancer of the lining of the blood vessels, Epithelioid Hemangioendothelioma, or EHE for short. I do not have any symptoms and the Doctors think that at the moment my cancer is slow growing, but they do not know when this will change.

The summer of 2015 was, up until the middle of June, filled with excitement. I got married on 11 July. However, the lead up to the big day did not quite go to plan… I broke my collar bone three weeks before the wedding. This was an inconvenience but I thought so long as I can get in my dress and go on honeymoon all will be ok. I managed the former but not the latter. However, it was not the collar bone that stopped my new husband and me from going away.

When my collar bone was x-rayed they also took an image of my chest. I had my collar bone pinned and plated and was enjoying recovering from the operation and catching some last minute sun in the garden before the wedding when my mobile rang. It was the radiologist from the hospital where I had had my x-rays, who was also a family friend. After some small talk, he said that something had come up on the x-ray that he was curious about. He said there were some nodules in my lungs. After discussing what these could be it was decided I should come in for a CT scan. I did not think that these were anything to worry about at this stage. The radiologist explained there could be any number of innocent reasons for the nodules.

The CT scan, however, threw up lesions in my liver. This changed the picture. Whilst apparently 1 in 500 people have similar nodules on the lungs, these combined with lesions in the liver is not nearly as common. 1 in a million people have the type of cancer I have, as I would later discover. I was desperate to find out what was wrong with me before I walked down the aisle. I was booked to have an MRI scan of my liver. Again, the poor radiologist family friend was left to call me and give the news that the lesions in the liver did not appear benign. I begged him to tell me what he thought it was, but he just did not know. I had done quite a bit of Googling at this point and came to the conclusion that if it was primary liver cancer that had spread to the lungs, or vice versa, I would be lucky to make Christmas. The radiologist kept telling me it did not look to be the case, but still he could not tell me what it was. The only way to be certain was to have a biopsy of the liver. The trouble was the radiologists did not know whether they could get a result before my wedding.  I had the biopsy but also went on the hunt for more answers.

I had a friend at university whose father was an oncologist at a big London hospital. I thought if my local hospital did not have the answers then maybe they would. I phoned my friend, and told him I thought I had cancer and I needed his help! His father rang me later that evening and on the day I was meant to be having my pre-wedding manicure I was on my way to London to find out what cancer I had. The oncologists in London thought that I might have another form of cancer called Germ Cell cancer. I spent a day in their hospital having various blood tests. They came back negative for Germ Cell cancer. Germ Cell responds well to chemotherapy, even if it has metastasised. This was not the news I had wanted to hear.

I quizzed the young registrar, if it is not Germ Cell what can it be? He was reluctant to tell me, but eventually said that he thought either primary bowel or skin cancer that had spread. A hideous prognosis either way. I was still desperate to find out which it was before the wedding. Establishing if it was primary bowel would be difficult, but I ask him to carry out a check of my body for a primary melanoma. Before he could call for a chaperone or draw the blind I had taken off my clothes. Modesty was no longer a concern, I just wanted to know what was wrong with me. No melanoma could be found and I left London thinking that if I married two days later, I might not have to decide whether I would have Christmas with my family or my husband’s family.

The day before my wedding I went back to my local hospital, they had some preliminary results from the biopsy. I was told that I had Epithelioid Haemangioendothelioma cancer. What on earth is that was my reaction?! The physician told me he had never come across it before but from what he had read he thought I had between 2 and 10 years to live. Result, was my initial reaction, I should make Christmas! I came home to the mania of the day before my wedding and the serial goings on of the past few weeks began to sink in. I had a rehearsal at the church in the afternoon and after an emotional run through, I asked the vicar if I could have a moment with her outside. I sat on a bench in our rural church graveyard and told the vicar I had cancer, I then asked if there was room in the graveyard. At 29 I did not think I would be planning my funeral while practising for my wedding!

We cancelled our honeymoon, at the time we did not want to be so far from home and our families. In the 7 weeks since my wedding I have spent a lot of time researching EHE. I have found the invaluable Facebook group which offers reassurance and practical advice. Whilst the future is far from certain, there are lots of people in the group who have given me hope that I will see many more Christmases.

I am very lucky to be being treated at the Royal Marsden. However, even the doctors there only come across this cancer a couple of times a year. Meetings with my oncologist consist of both of us discussing treatment options. I also do seek the advice from the 700 strong group on Facebook and am currently looking at either two resections of the liver or a pioneering way of killing the tumours from the inside out using high electric currents.

As well as throwing myself into research, I have also started to raise funds for a couple of doctors in the USA who are researching treatments and potential cures for EHE. They are the only ones who are dedicating their efforts to this rare cancer and rely hugely on funding from friends and family of sufferers to enable them to do this. Different people deal with diagnosis in different ways. As you have probably gathered from the above story I deal with things by trying to problem solve. I was never a scientist, so I see that the only way I can assist is by helping fund those who are. I am hugely hopeful that a cure is just round the corner and I am dedicated to help make sure the doctors in question get round that corner and find it! Until that cure is found, I have a terminal illness and day to day it is difficult not to imagine that every ache and pain is not a tumour becoming aggressive.