Getting the message through to DNAs
I brushed off my cancer as asthma
The delay in diagnosis of Dr Elizabeth Howard's rare form of cancer has left her with serious concerns over the two-week referral rule
Dr Elizabeth Howard's rare form of cancer has left her with serious concerns over
the two-week referral rule
Book shop shelves are full of books by 'survivors' climbing Mount Everest or walking to the North Pole to raise money after beating cancer. The compulsion to 'give something back' is so natural it should be more widely recognised as a condition in the adjustment and recovery process.
You can't help it. As you're treated with the latest drugs and scans you fear where you'd be if people hadn't raised the cash to research these things before you became ill.
In my case, I'm walking a modest five kilometres for 'Race for life' on June 26. That's good for me. I couldn't walk more than a few hundred yards at a time after my first admission.
But alongside my clinical fundraising symptoms I harbour an overwhelming sense of embarrassment. How did it take me, a 'good' GP, eight months to get diagnosed?
It started gradually. My established asthma got worse: a hacking cough, breathlessness and chest tightness. I became steroid-dependent and so my GP referred me to a chest consultant.
Over the next few months we both struggled to work out what was driving my worsening symptoms. The specialist kept trying to reassure me.
It's amazing how much can be normalised. The night sweats were because it was summer 2003 (the hottest on record). Being tired all the time was explained by working hard on top of disturbed nights. So I dropped a few sessions.
I was on oral steroids and eating everything I could see, but was happy because I wasn't putting on any weight. My eventual voice loss was most likely the steroids. (But I had nagging thoughts. Should I demand more investigations, would that be a waste of resources? Was I just being a paranoid patient?)
In the end my breathing became so bad that I couldn't finish my sentences. My cough echoed down the corridor to the waiting room. All my patients were saying 'You should see a doctor, Doctor'.
Then I lost my voice a criterion for the two-week referral. I didn't let myself think I had cancer but I had to get it checked out. I had to do something.
Left vocal cord palsy was diagnosed in clinic. The consultant didn't want to say the words. Within 24 hours I was CT-scanned and admitted to the Brompton. My cancer was a rarer presentation, mediastinal lymphoma, my 'asthma' symptoms (no lumps or bumps) were the only unexplained ones I had. I was not a hypochondriac after all.
Suddenly the way I was treated changed. My concerns were all legitimate now I had a cancer. I became the centre of attention. While I had the biopsies, the high-dose chemo and the stem cell transplant, the emotional pain for my husband and parents was several times worse. They were so desperate for me. The NHS offers families support, but mine, like so many, were reluctant to take it for fear of denying another patient the resource.
Chemotherapy had its moments but wasn't as bad as I would have imagined. The relief it gave to my breathlessness and cough was incredible. Palliative chemo does not seem like such a misnomer anymore. Everyone knows about the vomiting, but that didn't get me, the gripey guts did.
Tiredness is profound for most people but the steroids gave me energy. Putting on weight happens during chemo; healthy eating is encouraged with strict food hygiene. Baldness depends on the regime; hats and caps are in. No one stares: it is fashionable to have a shaved head. What looks odd is the lack of brows and lashes!
We started to run out of options when my PET/CT scans still showed tumour activity after the stem cell transplant. My dad scoured the worldwide web for a worldwide answer. I cried it out at home with my husband and worked on accepting it all.
Then, miraculously, five months after my high-dose chemo, I started to feel better. My symptoms were improving and my tumour marker falling. Doctors doused my theories of my body mounting an immune response to my tumour.
After an eight-week chase once round the therapeutic houses of radioimmunotherapy with stem cell rescue, I was back to radiotherapy with its risks to my recovered lung function. I was re-scanned. I was right I had improved spontaneously.
My scans made another trip to the multidisciplinary team. Everything was reviewed, including the original diagnosis. It was definitely still non-Hodgkin's, no metastases. The improvement was attributed to a late response (over six months late) to rituximab, an infusion of monoclonal mouse antibodies. So I was given four more doses. We're into academic papers here.
I had my remission confirmed in March and now look and feel nearly normal. My face is returning to normal now the steroids are gone. My hair is growing back curly! My voice is back and strong. I have no pain. I suppose that makes me a survivor.
Bit I still look at the two-week cancer referral criteria and other guidelines and worry for other unusual patients. It needs addressing. There should be an area where GPs can feel free to write 'I know this does not fit the guidelines but I am worried because....X,Y,Z' without this being classed as an 'inappropriate referral' by the triage nurse.
It's terrifying going back to general practice after being off for 18 months. I am rusty but my deeper understanding of the impact of illness on real life shows in how I approach problems. Having freely discussed the inconvenience of potential death with fellow patients I can discuss almost anything without feeling inadequate.
I'm scared of missing things, not just for fear of being sued but because I know the distress that comes with a serious illness and delayed diagnosis. If I'd been diagnosed earlier I would not have a paralysed vocal cord and would have had a less bulky tumour. I would possibly have got away with the first chemotherapy and radiotherapy.
And I probably wouldn't entertain thoughts about writing a book on how cancer has changed my life.
What my cancer taught me
1 Ideas, concerns and expectations are not just MRCGP niceties. Listen to patients. Don't get stuck on a diagnosis path and be afraid to come off it.
2 Beware the self-conscious. Patients sometimes express then dismiss their own theories before you can get a word in. They are bringing their ideas but are scared you might think they are silly. Encourage them not to feel like this.
3 Medically unexplained symptoms do not automatically qualify as psychological. Treat anxiety and depression, but remember organic disease can be insidious. Atypical presentations of common disorders are left out of textbooks for simplicity, rarities appear in brief and some things are only known to the specialists. Even though common things occur commonly, if the evidence is pointing somewhere rare do not automatically dismiss it as a figment of a fertile imagination. Someone has to have it. Keep an open mind.
4 Look to see the abilities of a person beyond their disabilities. Quality of life is underestimated by an onlooker. The patient's impression is distorted by untreated pain, depression or isolation. Simple advice, often from other patients, and the odd device can make huge differences to independence things like asking people to face you if you have impaired hearing and changing the ring tone on your mobile. Seats in shops can make a huge difference when you are fatigued.
5 Life and research go on. Encourage patients to do things they want to but not to burn all their bridges. You never know, they might receive the next miracle drug and end up in remission!
www.royalmarsden.org.uk (patient information section)
Elizabeth Howard is a non-principal in Romford, Essex, and former member of the GPC's non principal sub-committee
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Dr Howard can do so by visiting
Or ring cancer research on 0207121699 with a credit card ready quoting
Ref: elizabethhoward 'running' no.3407 Chelmsford