Why living with a mystery cancer can be so demanding to deal with

Karen Fitzgerald, 47, who has CUP cancer and is currently in remission.
Karen Fitzgerald, 47, who has CUP cancer and is currently in remission.
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Coping with any kind of cancer is traumatic but for those affected by cancer where the primary origin of the disease is unknown, it can be even harder to take.

Like a hidden enemy within, Karen Fitzgerald feels like cancer is lurking in her body waiting to strike at any time.

Mum-of-three Karen, 47, who is married to Chris and lives in Chorley, is one of thousands of people in the country diagnosed with a cancer that remains a mystery.

Karen, who was a tax officer but retired through ill health earlier this year, was diagnosed with Cancer of Unknown Primary (CUP) in March last year and was given a prognosis of less than a year. And to add to her anguish, Karen’s sister-in-law died of the same condition in January this year.

Karen explains: “I found a lump in my neck in February last year and I went to the doctors with it.

“I was initially given antibiotics but they did not shrink the lump at all, so when I went back to the doctor a couple of weeks later, just as a precaution, I was refererred to hospital.

“I had a biopsy on the morning and in the afternoon, I was told I had cancer.

“The consultant told me that they had found cancer in my neck but they knew it had not orginated there. I felt like I was in a daze.

“Cancer whatever kind is horrendous, but at first, I didn’t realise the implications of them not knowing where the primary cancer was.”

Karen underwent a CT scan and a full body MRI scan to try to find the primary cancer. But although doctors found secondary tumours in Karen’s neck, stomach and the left hand side of her body, they could not identify the primary cancer.

Karen had surgery to remove the lump and underwent chemotherapy. She is now in remission from the cancer and not classed as terminal. However, she feels she is living with a ticking timebomb as she knows the cancer will re-surface at some point.

Karen explains: “Doctors tell me because it is Cancer of Unknown Primary, they know it is there and because it has not appeared, I have to be scanned every few months.

“So even though I know I am in remission at the moment, I feel like I am waiting for it to come back because the doctors have told me it will come back. It is as if it is there lurking in my body, even though it is not detectable by scan.

“The hardest part is the not knowing where the primary cancer is. It is like a mystery.

“Doctors can treat can treat cancer better when they know where it started.

“However, I am lucky as at least the CUP cancer was diagnosed fairly early for me. My sister-in-law’s cancer had spread even further and was in her liver and lungs by the time she was diagnosed and that is why it was too late for her. Doctors did not know where her primary cancer was but suspect it may have started in her bile duct.

“I have now been cancer free since October. As well as trying to live my life to the full, I want to do all I can to raise awareness of CUP.”