Cancer of Unknown Primary (CUP) Awareness Week

Cancer of Unknown Primary – Megan’s Story

Megan  and her 17-month-old-son at the wedding of her sister in June 2009, three months before she was diagnosed with a form of cancer that could not be identified, known as cancer of unknown primary (CUP)

Megan and her 17-month-old son at the wedding of her sister in June 2009, three months before she was diagnosed with a form of cancer that could not be identified, known as cancer of unknown primary (CUP)

The Nightmare of the Hidden Cancer

My energetic, fit and healthy daughter Megan was diagnosed with abdominal cancer almost exactly five years ago. She died four months later, aged 32. We have never known what type of cancer she suffered from. Was it ovarian, pancreatic, stomach, liver …. no-one could say. Numerous tests were conducted, scans carried out, consultations held. But the site of the primary tumour which had caused my daughter to become ill so quickly and so devastatingly was never found. The cancer cells riddling her abdomen were secondary. During those terrible four months as we fought for Megan’s life, we never heard the words Cancer of Unknown Primary.

We did not know that a person could be struck down by a form of cancer which medical science is unable to identify. Cancer treatment is targeted at the type of cancer a patient is suffering from. If you do not know what type that is, all doctors can do is guess and hope. And so the desperate search to find that illusive tumour continued.

The Agony of Not Knowing

Megan underwent chemotherapy targeted at different organs in her body which doctors thought most likely to be the site of the primary tumour. The treatment caused her immense physical suffering. And all that while the tests and the waiting continued, as did the hope, every day, that the site of the tumour would be found and properly targeted treatment could begin.

The mental and emotional suffering of all this was a form of torture. On more than one occasion we were told that the result of a scan or investigative procedure was negative. Megan did not have stomach cancer, for example. No tumour had been found. We rejoiced in our ignorance when these negative results came through. Perhaps she was in the clear. But time and again our hopes were dashed as Megan’s condition deteriorated and she fought to stay alive.

About a month after she became ill, Megan wrote this poem about her cancer. She was a medical scientist herself, an equine veterinary surgeon, and could look at her illness with an unusual objectivity. In this poem she addresses her hidden tumour.

Live and Let Live

As I am one of God’s children, you must also be.
You find your niche according to His law, somewhere in me.
And, as Darwin predicted, you will struggle and strive
And I shall endeavour to keep us both alive.

I don’t suggest it’s your fault, though neither is it mine
That some mutation of your code made you thus malign.
But, given that you are my flesh, my blood, my own,
Not so very different from my precious baby son,

Supposing that you crept, spider-like, back into your hole.
I should not wish you harm for harm’s sake,
I’d let you live, I’d coexist with you, each in our quiet way.
No need for enmity or spite. It’s not a war.
©Megan Young

Searching for Help

As time went by and our self-taught knowledge of cancer increased, we began to realise that the standard tests and treatment available to cancer patients in this country were not adequate for someone in Megan’s condition. I discovered there was a diagnostic tissue test that was not available in the UK but could be carried out in the USA and I paid for it to be done. It measures the gene expression levels of 2,000 genes, in order to help doctors determine the type of cancer a patient has in difficult to treat cases. It took some time for this to be organised and the results came through after Megan died. They were inconclusive. A post-mortem was carried out after Megan’s death but this also failed to conclusively identify the site of Megan’s cancer.

Making the unknown known – The Cancer of Unknown Primary Foundation

About two weeks after Megan died, a friend contacted me. She had heard a programme about Cancer of Unknown Primary (CUP) on the BBC. This was the first time that I or any of Megan’s family had heard these words. I listened to the programme and contacted John Symons at the Cancer of Unknown Primary Foundation. He and the charity have been a great source of support.

Does it help to know?

Would it have changed anything if we had known that sometimes it is just not possible to find the site of a primary tumour? My answer is yes. I do not think that that knowledge would have saved Megan’s life but nevertheless I would like to have known. It is impossible to say with certainty what difference it would have made. It is a hypothetical situation. But, looking back on those frantic four months as we battled against time to find the site of Megan’s primary tumour, I feel that the weeks we had left together would have been better, calmer, gentler. So I do wish that Megan’s doctors had told us about Cancer of Unknown Primary – although it may be that they did not know either.

John Symons sums up this nightmare situation so well: ‘A cancer diagnosis is frightening for patient, family and friends. Not to know where this strange, invasive, disease has originated in the body is a double blow. CUP patients face unique psychological and social concerns.’

He and the charity, The Cancer of Unknown Primary Foundation, work to ‘make the unknown, known’ by stimulating research and providing information and support to those affected by this frightening condition. Advances in medical science and our understanding of cancer are needed in order to help CUP patients and their families. This knowledge will help all cancer patients everywhere. So please take a look at the charity’s website to read more about the work that it does.


Comments

Cancer of Unknown Primary (CUP) Awareness Week — 1 Comment

  1. Reading Megan’s story is like reading our own as we near the first anniversary of my husband’s passing. At 32, he was diagnosed with secondary cancer of the Omentum, primary unknown. He was given a 2-3 year prognosis but succumbed to his illness 10months later.
    Finding the primary cancer was SO important to us. I, too, cannot say if this would have extended his life but it would have certainly given him/us hope to participate in any future trials. Optimistically, I believed we could have tried to manage his Cancer in the hope that a trial or new treatment would pop up to keep him with us for as long as possible. Not having a definite diagnosis reduces all chances of providing optimal treatment because one doesn’t know what they are treating. It is heartbreaking. I hope there will be a day when all Cancers can be diagnosed and successfully treated.

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