patients Stories

Robert's Story

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

The first inkling we got that something may be seriously wrong was when my wife, Jane, got an urgent call back to the hospital following a CT scan to check for gall stones after experiencing periodic pains. We went to the hospital, waited nervously through the inevitable hour-plus delay and then got called in to see the haematologist. My stomach muscles were like knots.

“You’ve got several lesions on your liver and secondary deposits in your lungs”. Wham! No “hello”, no “how are you feeling?”  We asked what that meant.  “We don’t know” said the doctor. Great, just what you want to hear! “We are not sure what this is but I want to do a biopsy”. We sat holding hands, too numb to know what to do or ask.  We didn’t ask if it was cancer, too frightened of the answer. We left and drove home. Jane sat down on the sofa and burst into tears. I sat next to her and did the same. It was a grim time.

The biopsy results however were fantastic. The lesions were haemangiomas, benign clusters of blood vessels, and no evidence of malignancy. The haematologist was surprised, but said it was not his domain. He did want Jane to see his colleague however who was an oncologist. I’ve always thought it was odd that he would not mention the word cancer, but suggested we see an oncologist, immediately confirming the possible link. Our joy of the biopsy result was immediately crushed.

We saw the oncologist who was stunned to see Jane appearing totally healthy. “We thought you had very advanced breast cancer” she told us, “but you obviously don’t”. She admitted to being somewhat flummoxed. We asked her what the definitive test for cancer was. She told us it was something called a PET scan and so we agreed to do that as matter of urgency as the uncertainty was becoming unbearable.

Jane had the PET scan on a Thursday and on the Friday she rang me to say the hospital had rung to say it was not cancer. I was weak with relief; overjoyed; all our fears were ungrounded! God we were going to have a good weekend, which we did, free of the immediate fear of having cancer. It was the last weekend where that would be the case.

On the Monday Jane’s oncologist rang me at work to say that they might have been slightly premature in their ‘all clear’.  I sat at my desk trying to think what to say, and how I was going to break the news to Jane. How could they tell us we had the all clear on Friday and then ring up three days later to say it might not be the case. The answer was ‘sugar take-up’. A PET scan shows sugar take up from a die injected before the scan. At first inspection it was zero, so no tumours, but on very close analysis the radiographer had noted very very slight take up in the liver lesions.

At this point I asked the doctor if she could talk to a liver specialist as she still had no idea what she was dealing with. She thought this was a good idea and a week later came back to say that the Liver Unit at Leeds had suggested that Jane had a very rare condition. To check this Jane went through another biopsy and was referred to the Royal Marsden Hospital. There we met Professor Judson at the Sarcoma Unit and he confirmed Jane had Epithelioid Haemangioendothelioma, or EHE. For the first time, six months after starting the diagnosis process, we knew what Jane had, and it is cancer.

We were stunned. Jane went into depression. For Jane, several of the symptoms we were told to watch for were also symptoms of her depression: weight loss, tiredness etc. It became a vicious cycle. Yet somehow she kept an outwardly normal appearance, largely to protect our kids. I was amazed how she kept that up.

For the first two weeks after the diagnosis I just kept bursting into tears. A colleague had described exactly the same response when his wife was diagnosed. It’s caused by the shock of course, and sudden need to face the possible loss of somebody you love. The strange thing is you don’t really ever understand how much you love somebody until you come face-to-face with losing them. God I love my wife. I tell her every day but still worry she does not understand how much.

Since then we have been through endless scans and appointments. Jane got back to some normality, and slowly we got our lives back on track. Laughter returned. Jane has dealt with the fear she feels every day with courage and strength and dignity. We push EHE to the back of our minds – never out, but at least to the back. It comes crashing forward every time she feels a pain or twinge, but we manage it better now.

EHE has an indolent (passive) form which Jane has at the moment. All the tumours are still there, in locations that are inoperable. We pray they stay indolent, but EHE also can turn aggressive, and in some cases very aggressive, without warning. Nobody knows why. Nobody can predict it, so patients wait and watch, and pray every day that it does not change. Jane calls it her ‘ticking time bomb’, where every pain or twinge in her body creates silent but intense fear. The relentless pressure periodically takes its toll, but most of the time we keep going and try not to let EHE rule our lives.

Today we are approaching Jane’s next scan, which are now annual. The stress and anxiety starts growing about a month or two out. We try and laugh and joke about it, trying to be light-hearted as we troop to the Royal Marsden for her results. But when we get called in to that room it’s like that first consultation, gut-wrenching anxiety. We sit and hold hands and listen to the doctor’s report. So far we have been lucky, others have not.

Jane will face annual scans for the rest of her life. We don’t talk about the future much. We don’t talk about what we will do in retirement. It’s not deliberate, just a subconscious recognition of the situation. So how does this story end? We don’t know. So little is known about EHE that doctors cannot give you any form of prognosis. Treatments are entirely hit and miss, and currently there is no sure drug regimen to manage this rare cancer. That is why the research being supported by the EHE Rare Cancer Charity is so critical.

We will continue to fight EHE. Jane will continue to handle her feelings and emotions and fears with the same courage and dignity she has shown throughout. And every day we will pray that her condition does not change so we can continue to enjoy our lives together.