patients Stories

Jane's Story

(We have used an alternative name in this story for reasons of patient confidentiality)

My cancer journey began in December 2002, when I experienced a bout of sharp pain on my right side. It lasted about a week, with the pain weakening towards the end. I assumed it was gall stones, but went to my GP who referred me for an ultrasound scan. I had this in January 2003, by which time the pain had gone, and they could see nothing unusual. Later that year I had the same pains again, so had another ultrasound, which again showed nothing unusual, except that compared to the previous scan, my spleen was enlarged.

The significance of this meant nothing to me, but clearly it set off alarm bells for the doctors. I was sent for blood tests, which were normal, except that my paraproteins were high. This got me referred to a haematologist, who sent me for a CT scan and a full skeletal survey. This was when things started to get scary. I had a follow-up appointment arranged for a few weeks time, but I received a letter calling me back early. We knew something was not right. Luckily we were concerned enough that my husband came with me to the appointment. That was the day where our world changed. We were told that they had found multiple lesions on my liver and lungs, and asked if I had found any lumps anywhere else? I said no, but they had a check of my breasts. Clearly they thought that these lesions were secondary cancers. I was completely shell shocked. I was feeling perfectly well, had no symptoms, and was being sent for a liver biopsy! All I could think of was my two children who were 5 and 7 at the time. Were they going to lose their mum?

I had the liver biopsy, along with a bone scan (negative), and blood tests including tumour markers (all normal), and got the results two weeks later. That was the longest, most emotional 2 weeks of my life. When we got the results, we couldn’t believe it. A haemangioma, but with no evidence of malignancy. We were so happy, and somewhat confused that I was also being referred to an oncologist.

My CT scan was reviewed, and a possible lesion in my breast was spotted, and so the emotional rollercoaster continued. I had a mammogram. All clear. I had an MRI of the liver. The multiple lesions showed up and were thought not to be typical haemangiomas. The doctors were clearly baffled. And I was just about keeping my head above water emotionally.

We asked if there was any scan that would categorically tell me if I had cancer. A PET scan was arranged, which we organised privately to speed things up. My oncologist was at the hospital when I had it done, and rang me to say there had been no uptake of the sugar, so no evidence of malignancy. Phew! I could breathe again. Until after the weekend, when she rang my husband to say that after closer inspection, of the scans, there was low-grade uptake in the liver, but they weren’t sure what that meant, so still inconclusive.

These mixed messages were doing my head in. We asked if there was a liver specialist who might be able to help. So all the information was sent to a liver radiologist in Leeds. He came back with a possible diagnosis of haemangioendothelioma. This was confirmed after another biopsy, and I was referred to the Royal Marsden, under Professor Judson, a sarcoma specialist, who is familiar with this very rare cancer. I was told that this cancer is extremely rare, and as a result, little is known about how it behaves, or how to treat it. But it can be very malignant or benign. I was hoping for the benign end of the spectrum.

It had taken 6 months to come to this diagnosis, and once I had that information, I went into depression. I had no symptoms of the cancer, but I was a wreck emotionally, due to the yoyo-ing of emotions as the doctors tried to diagnose something they had never seen before. I ended up on anti-depressants, sleeping pills, having counselling, and losing a lot of weight.

I had another CT scan, and this showed no progression of the disease. These scans were repeated every 3 months for about 2 years, each time showing no progression. I still dreaded the appointments, and quickly learnt to request particular doctors who knew about this cancer, as being told by one doctor that he had just done a google search to look it up didn’t fill me with confidence! It took me about 2 years to wean myself off the anti-depressants, and to get back on an even keel.

It is now 10 years since I was diagnosed, and I have gradually extended the time between scans, to 6 monthly, and now to annually. I have switched to mostly MRI scans plus chest X-ray, to reduce the radiation I’m exposed to. I still get incredibly nervous before the scan results day, because I know that this cancer is unpredictable, and can become more aggressive. I still worry about twinges and any aches and pains I have, but I try to live my life normally, and treasure my family and friends, who all helped to get me through those dark days.

I discovered the EHE Facebook group a couple of years ago, and it is reassuring to communicate with people who know what you are experiencing, and its great to share information about this rare cancer, and to support each other. It can also be scary, hearing other people’s stories, but I feel that I can’t bury my head in the sand. I need to know about this thing I have in my body. I guess though that that is the hardest part for me, knowing that this cancer is in me, living, and may become aggressive at any time. I call it my ‘ticking time bomb’. I can only pray it goes on ticking, very slowly.