Intended for healthcare professionals

Practice A Patient’s Journey

The invisible worm: ovarian cancer

BMJ 2009; 338 doi: https://doi.org/10.1136/bmj.b2072 (Published 04 June 2009) Cite this as: BMJ 2009;338:b2072
  1. Gill Reeve, patient1,
  2. Stuart Mackay-Thomas, GP associate2
  1. 1London
  2. 2Hampstead Group Practice, London NW3 2QU
  1. Correspondence to: G Reeve gereeve2002{at}yahoo.co.uk
  • Accepted 29 April 2009

It took nine months for her GP practice to diagnose Gill Reeve’s symptoms as ovarian cancer. She wants to know why it took so long.

O Rose, thou art sick!

The invisible worm,

That flies in the night,

In the howling storm,

Hath found out thy bed

Of crimson joy;

And his dark secret love

Doth thy life destroy.

I was a fit, healthy, active 66 year old writer and peace campaigner, but some indefinable part of me knew that somewhere, somehow, something was seriously wrong. This poem by William Blake came out of the blue in February 2008 when I was asked to write anything I wanted during a neurology test. I had been referred to University College Hospital Neurology Clinic because of the worry that my worsening memory problems might reflect my mother’s history of dementia. Nothing of concern was found apart from hypertension. A reading of the loss of a stone in weight never reached my GP practice.

Maze of symptoms

In September 2007 I had felt intermittent twinges of pain in my right side under my ribs. I had no idea which, if any, organ might be involved. I had a steep and protracted learning curve. My GP suspected gallstones and referred me for ultrasound. No gallstones were found, but a benign kidney cyst was suspected of causing my symptoms. In mid-November, when the pains seemed to be spreading, I went back to my GP, who suggested a referral to the urologist if things got worse.

I was busy, tried a wheat free diet, and when in early 2008 I saw my girth was extending I just thought it was middle age spread. But after a visit to Zambia I could ignore the pain no longer, and in early April the GP sent me to the urologist, who offered a procedure to double check the gallbladder. I declined, since I feared needles and being injected with a purple dye. In mid-May I was diagnosed with irritable bowel syndrome and given medication. Soon after there was a bad attack of diarrhoea, which turned out to be caused by campylobacter, and the pains got worse.

Diagnosis—at last

On 20 June 2008 a different GP examined me and noted fluid in my abdomen, enlargement, bloating, and weight loss, and took blood to be checked immediately. Three days later, when I was on holiday in Suffolk, I had a phone call to say there were high levels of non-specific markers for ovarian problems. I would be referred for a consultant appointment and an ultrasound and scan within two weeks. Shocked, I asked if this result could mean cancer. He said it could.

Ten days later, bewildered and unwell, I went through a barrage of tests at the Royal Free Hospital, not helped by the chaotic new CRS computer system, which forced many of the results to be retrieved in person. The consultant told me she strongly suspected ovarian cancer and would refer me for confirmation and treatment to University College Hospital, which had the lead gynaecology/oncology department in the North London Cancer Network.

Because the Royal Free Hospital’s results failed to reach University College Hospital and tests had to be repeated, it was not until 22 July that I got confirmation of my diagnosis: stage IVa adenocarcinoma of the ovary. I have since learnt that doctors miss ovarian cancer so frequently that it is usually found only at a late stage, and is known as “the silent killer.”

I was admitted the next day to have the toxic fluid removed from my abdomen—reassured that it was my future surgeon on her ward round who elegantly slipped in the drain. As I watched with fascination nine litres of ascites flowing from my grateful body over two days, I realised I had crossed the border from the real world to an alien one of obsession with bodily functions—I had become a Patient.

Thank God for the iPod

The oncology team decided that because of the metastases I should first have three chemotherapy sessions at monthly intervals starting on 5 August to try to shrink the tumour. Because of my funk about needles my niece Charlotte, who was my invaluable escort throughout my medical forays, got me an iPod, stored my favourite music on it, and made sure I got a bed rather than a chair so I could relax during treatment. The nurses were mostly fine at administering the chemo, giving information and calming fears. By my second visit the chemo room almost felt like a home from home.

The prevailing metaphor for cancer, as for most disease, as Susan Sontag has pointed out, is “warfare.” The body is a battlefield, and the invading organisms and proliferating cells are an enemy to be destroyed. Even the chemo destroys healthy cells. This imagery must contribute greatly to the climate of fear that surrounds cancer, and is a “particularly inapt metaphor for the peace-loving,” such as myself. I felt I must approach my chemo in a cooperative way. Discovering the taxol agent was made from yew needles, I accepted it gratefully as a plant cure—and thus began to feel more in control.

Home help

Each chemo session lasted several hours, and I returned home to a range of side effects that continued for up to three weeks. It was thanks to my family and friends that I got through this period. One provided daily fresh fruit and vegetable juice and offered nightly meals on wheels; others brought soup and helped me out for walks. A brilliant Macmillan nurse visited me regularly to help with pain and other problems. My yoga teacher supplied a simple daily routine, and a weekly session of Jin Shin Jyutsu (a traditional Japanese healing technique) helped me cope with the effects of chemo and extreme surgery.

The kindest cut—debulking

Thanks to the chemo my tumour had shrunk enough for me to have the debulking laparotomy on 8 October. This was bearable only because by now I trusted my surgeon, and managed to remove myself from my body to allow the preliminaries. The relief when I woke up in intensive care after a five and a half hour operation to discover I was alive and without a stoma bag—even though my legs seemed to be dead—was exquisite. Apart from one terrifying episode when my pain relief failed in the early hours, I recovered well on the ward. After three further chemo sessions and a month at home to get over them, the CA125 test on 13 January 2009 showed that I was in remission.

Having it out with the practice

Why had it taken so long to diagnose my disease correctly and get me into treatment? Now I could reflect on what had happened, I felt great anger at the GPs who had failed to make the connections between symptoms until the disease had spread, and at the hospital computer system, which had caused my almost unbearable wait to know the truth. Since I was already in the high risk group for ovarian cancer (over 65, had had hormone replacement therapy, no children) surely I should have had a CA125 test at the outset. The irritable bowel syndrome diagnosis was particularly galling. Supported by a friend I asked to see my records and have it out with those most involved at the practice.

The GPs agreed. At our meeting I expressed my anger and sense of betrayal, and the GPs answered in detail. The discussion was long and heartfelt, with several points of agreement, such as: was there a way to get to patients’ underlying concerns when there were indefinite pains? Could they use the CA125 test earlier? Could they find a mechanism to ensure weight loss was flagged on file? I appreciated their openness, their willingness to consider change, and—perhaps most importantly—the apology from the doctor who diagnosed irritable bowel syndrome. We felt it would be useful to write about the experience from both points of view.

Only time will tell if I can evict the worm.

A doctor’s perspective

A delayed diagnosis of a life threatening illness is one of the most feared events in a doctor’s career, and when it happens to a patient known to the practice for decades, there are inevitable feelings of guilt and contrition. Gill’s initial symptom of vague right upper quadrant pain was typical in its non-specificity of ovarian cancer—not localised to the pelvis and relatively minor in severity. In the earlier stages, the all too brief consultation time was predominantly focused on her concerns over memory loss, and the nagging, mild pain took back seat. Later, Gill’s symptoms of weight loss and increasing abdominal girth were unfortunately more indicative of a later stage of ovarian cancer.

It is one of the side effects of increasing accessibility and perceived decreasing continuity that patients might have to see a different doctor for urgent appointments. This situation allows a fresh clinical acumen to assess the patient. During one such appointment I met Gill for the first time, and the symptoms of weight loss and the signs of ascites alerted me to the likelihood of a more serious problem. Thus this lack of continuity with her usual doctor had an unexpected benefit, one that is not often commented on by those lamenting the changing role of the family doctor.

The problem of how to prevent this personal tragedy repeating itself throughout the world’s consulting rooms is an important one. Ovarian cancer is a great mimicker and the symptoms are insidious and variable—they include abdominal pain and bloating, but also changes in bowel habit, urinary symptoms, or pelvic symptoms (SIGN guideline 75). Diagnosis in the early stages hugely increases survival but is, of course, the most difficult to elucidate clinically. Our large practice held a significant event analysis and reviewed the evidence soon after we met with Gill. Gill’s previous hormone replacement therapy and nulliparity will have increased the risk of ovarian carcinoma, albeit only to a modest degree. We concluded that increased awareness by our clinicians of this relatively common condition (a typical GP will see one new patient with ovarian cancer every five years), coupled with much lower threshold of investigation (pelvic ultrasound and serum CA125), especially in older women, is crucial, even if there is no evidence to support this at present in those with vague abdominal symptoms. More optimistically, preliminary results of a recent large population screening trial show promise for detecting tumours at an early stage, although 10% of cancers were missed and some patients had surgery that turned out to be unnecessary (BMJ 2009;338:b1084).

The feelings of guilt in the doctor will fade slowly—we cannot turn back the clock. For this reason, as a team, we share our knowledge in an attempt to assuage the invisible worm and those others that fly in the night. With extra care and vigilance, and perhaps when the results of the screening study are published in five years, this particular worm may be turned.

Stuart Mackay-Thomas, Hampstead Group Practice, London NW3 2QU sit{at}doctors.org.uk

Useful resources

In UK women ovarian cancer is the fourth most common cancer after breast, bowel, and lung. Each year there are nearly 7000 new cases of ovarian cancer (most in women over 65) and the disease claims more than 4000 lives. If the disease is caught in the early stages, 90% of women will live for more than five years.

www.ovarian.org.uk—Ovarian Cancer Action carries out research and raises awareness of symptoms of ovarian cancer

www.ovacome.org.uk—offers telephone support network for people affected by ovarian cancer

www.cancerbackup.org.uk—information and support offering free services to all affected by cancer

www.cancerresearch.uk—aims to improve quality of life for people with cancer and support them and their families.

www.nhs.uk/Livewell/cancer/Pages/Ovariancancer.aspx—useful information from the NHS

www.macmillan.org.uk—offers free nursing and other support for people with ovarian and other cancers

Notes

Cite this as: BMJ 2009;338:b2072

Footnotes

  • This is one of a series of occasional articles by patients about their experiences that offer lessons to doctors. The BMJ welcomes contributions to the series. Please contact Peter Lapsley (plapsley{at}bmj.com) for guidance.

  • Competing interests: None declared.

  • Provenance and peer review: Not commissioned, not externally peer reviewed.