How dare researchers say cancer patients worry too much

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Medical arrogance

makes this cancer

patient fume

 

Recently, medical publishers Wiley produced an article that made me furious.

If you are happy with your medical team, are being well treated, and don’t worry about the future – please don’t read on.

But if you are worried – the article stated:

Certain Breast Cancer Patients Worry Excessively About Recurrence.

Published in the online medical journal CANCER, the report was written by medical people – of course.   

And went on to say that “worrying about cancer recurrence can compromise patients’ medical care and quality of life”.

I don’t know about you, but this made me fume.  We have every right to worry.  Admittedly, most of us are strong enough to try and put these worries at the back of our mind – but they are always there:  a small black cloud hovering.

Any tiny chance of us having to go through the same horrible treatment again, wrapped in an impenetrable fog of medical arrogance that tells us nothing when we try to find answers, is enough to worry anyone.

Many doctors don’t seem to realise most of us are realists;  we try to face what happens to us with fortitude.  But if we might have to have surgery, chemo and radiotherapy again, carried out with the same level of unfeeling arrogance with which we had to go through the production line experience the first time – WE HAVE EVERY RIGHT TO BE ANXIOUS.

Why we worry

As patients, we struggle to get on with life.  We do what we are told, but often we are given sparse or no information, particularly about possible side effects from the drugs we are prescribed. 

When I went blind in one eye from ‘my’ drugs, my unfeeling Oncologist dismissed my concern with, “I’ve never seen this before”, couldn’t suggest what I could do, and left me crying in the Ladies, trying to think where I could find out what I could do to find the cause, and if I were ever to get my sight back again in that eye.  (I did, but it took French medical care to sort it out).

Shortly after, painful, bloody skin lesions all over my body were dismissed by one of his colleagues with a shrug, and “it’s your age”, as he swept out of the room, leaving me to deal with the blood and pain on my own.

We can be treated as though we have no brain, that we should ‘put up with embarrassing incidences of hot flushes, incontinence, vomitting, etc. without a murmur, and when we get tired and anxious, no-one has any time for our concerns, or even any help to offer.

However much we try to remain positive, the sheer impossibility of getting information and helpful answers out of the ‘Team’ who are supposed to be looking after us, but are always in ‘meetings’ when we want to talk, can be frightening.

When it happens to them

Surprise, surprise – doctors and nurses who experience breast cancer themselves are often the most vehement in condemning the appallingly arrogance with which medics treat us.  One doctor I know wrote me a very accurate and feeling diatribe against the medical establishment;  every word she wrote found an echo in experiences recounted to me by non-medical patients.  If it could happen to her, we are not alone.

Those lucky enough to be treated by caring, feeling professionals, can feel smug.  There are some wonderful, professional medics out there who really reassure and comfort patients.  But so many hide behind the pompous attitude that says we are lucky to have been treated, and we really shouldn’t worry our little heads about a small chance of recurrence.

What the report said

According to the article, “most women who are diagnosed with early stage breast cancer have a low risk for cancer recurrence. Despite an optimistic future, many of these women report that they worry that their cancer will come back. While some worry about cancer recurrence is understandable, for some women these worries can be so strong that they have an impact on what treatments women choose, how often they seek care, and their quality of life as cancer survivors.

All of us know of fellow patients who didn’t come under the ‘most’ category – but their cancer returned.  And when you know what has happened to a friend, it can’t help but cast doubts in your mind.

To a pompous medic, ‘low risk’ can be 5% chance of return.  To a cancer patient that can mean “one in 20 of us will have cancer come back”, and for many that is TOO BIG a chance.  If cancer is going to return for some – what are the professionals doing to reassure us that it won’t be us?  Apparently my blindness only happens to one in 500.  Well, it happened to me – ,statistics didn’t help.

Why isn’t there a trained doctor or nurse to whom we can go when we get worrying symptoms?  All we can do is look these symptoms up on the Internet.  Often the best websites will note that symptoms we are  experiencing should be “checked out by your Doctor”.  And how many doctors then dismiss our concerns?

We never expected to get cancer in the first place.  Many of us had to fight to get doctors to take our symptoms seriously, so we would expect that they would listen to us more sympathetically next time, but ’tain’t so.

Who wrote the report?

Nancy Janz, PhD, of the University of Michigan School of Public Health in Ann Arbor, and her team, found that women who had greater ease in understanding clinical information that was presented to them, who experienced fewer symptoms, and who received more co-ordinated care, reported less worry about recurrence.  Er – yes.  So why don’t we all get the same level of care?

We would all love to have medics who gave us more information, answered our questions promptly and informatively, and helped with strange and uncomfortable side effects.  Give us the time and answer our fears, and we will be happy. But apparently cancer patients were vulnerable to high levels of worry…… when we were “younger, being employed, experiencing more pain and fatigue, and undergoing radiation treatment”.

“How much women worry about recurrence is often not aligned with their actual risk for cancer recurrence,” says Dr. Janz. “We need to better understand the factors that increase the likelihood that women will worry, and develop strategies and appropriate referrals to help women with excessive worry”.  Dr. Janz noted that programs to assist women must be culturally sensitive and tailored to patients’ differences in communication style, social support, and coping strategies. She also stressed the importance of appropriately presenting risk information to women with breast cancer so that they can understand their risk and effectively participate in treatment decisions.

It’s not rocket science

A few weeks ago I had been sent a report on research undertaken at one of the top American cancer research  centres.  It seemed to highlight the concerns I was having about symptoms that were occuring in my body – so I email it to my Oncologist and asked if we could discuss this at my next appointment.

I wasn’t too happy when I turned up and mentioned my email, to have this dismissed with “I have about a 100 emails I haven’t replied to”.  He was busy,  wanted to get the next patient in, so I try not to worry.

For the future

The charity Breast Cancer Care realises that secondary, returning cancers are a big worry, and last Autumn saw the birth of a very effective campaign on this issue.  See more info on http://after-cancer.com/researchsurveyspetitions/breast-cancer-care-prove-lobbying-and-campaigns-work/

They understand how we feel.  They offer practical solutions and support, especially on their helpline – so I have ditched the report in CANCER – and thank heavens for Helplines run by BCC, Breakthrough Breast Cancer, Cancer Research UK, etc.

And perhaps, if Conferences, reports, meetings etc. involved genuine patients, rather than just professional medics, we might get some more helpful and useful information out of these reports.  We are the patients – we know what is happening – we need to be told accurately what medics find out about our bodies.

Further reading:

Another Wiley report might give readers more hope that there are medics that understand our fears:

http://onlinelibrary.wiley.com/doi/10.1002/pon.614/abstract

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6 thoughts on “How dare researchers say cancer patients worry too much

  1. Michael Cure March 29, 2011 at 8:50 pm Reply

    Yes, I couldn’t agree more with your comments regarding the dismissal of patients worries concerning cancer reoccurrence.
    It is too easy for the powers that be to have no concern about cancer reoccurrence when THEY are not the ones who are likely to suffer or have the illness reoccur. It is exactly the same as passengers on an aeroplane which is about to crash – 100% of those on board suddenly become devout christians and start praying for all they’re worth !
    Great care needs to be given to those at cancer at all stages of their treatment – diagnosis, operative procedures, restorative cures and so on. Each stage is equally important and has to be treated with equal importance, the reason for this being obvious.
    The only way I feel for those in charge of medical procedures to become aware of what is involved, and give worthwhile advice, is to be given a good dose of cancer themselves . They would then be in a position to give compassionate, proper advice. I rest my case………….

  2. Jacqui Burke March 30, 2011 at 7:44 am Reply

    Another excellent article Verite. When I completed my treatment for breast cancer (surgery, chemo & rads) I was confidently told by my oncologist “Go away and put it all behind you”. Imagine my shock when a year later when I went for my next mammogram, the consultant indicated that the small bumpy part of my lumpectomy scar that I’d been told was “just scar tissue” was in fact another tumour. So now I have learnt my lesson – and I worry! And if that makes me a pain in the arse for the medical professionals that I deal with – TOUGH!

    • Verite Reily Collins March 30, 2011 at 9:13 am Reply

      Jacqui
      Thanks for lovely compliment – but isn’t it sad we have to learn lessons ourselves. I had been told I was ‘free’ etc. etc. And lived in blissful ignorance until I started research for my book in Inflammatory Breast Cancer. Then I learnt that one is not stupid when one worries. Wonder how long before medics realise that we do have a brain and can put two and two together – then as you say, we become pains in the axxse! I think we should have a club!
      Verite

  3. Irene April 6, 2011 at 9:13 pm Reply

    Hear, hear. I’ve lived with the fear of recurrence for 10 years and yes it has come back. Those that tell us to move on, pat the experience behind us etc. have no idea what it is like to be faced with a life threatening disease and to face years of treatment to keep recurrence at bay. Psychological support in this country is appalling – but thanks to the dedication of people like you awareness is growing. With gratitude.

    • Verite Reily Collins April 7, 2011 at 1:45 am Reply

      Irene
      It’s not just me – but everyone who reads this site and actually goes to an authority and puts over their suggestions, that is going to drive improvemment and awareness. I find that arrogance seems to reign in so many medics’ minds. We need to tell them that, massive salaries notwithstanding, they are there to serve US – and to remember why they went in to medicine.
      Verite

  4. Nirupama April 9, 2011 at 1:35 am Reply

    What an incredibly unfeeling attitude. You are absolutely justified in ‘fuming’. It seems to be in the same league as blaming the victim for the ill that happened to them – as if it’s all their own fault worrying so much that they cannot make rational choices with regards to “what treatments women choose, how often they seek care, and their quality of life as cancer survivors.” Try and find one woman in the world who would not worry about recurrence. Try and find one man in the same situation who would not worry about it. And to cap it all – try and find one doctor who has had cancer and ask them hand on heart to declare they do not worry about it enough to ‘impact’ their own choices about their treatment. If anything, received wisdom says that doctors make the worst patients. Actually if I were a doctor, I would worry about the mental health of a cancer patient who is not worried about recurrence.
    Verite, your work is becoming more and more essential with what is happening to the NHS. Doctors have become so ‘systemised’ its almost as if they have forgotten the ideals why they went into medicine in the first place. It might be good to remind them of the Hippocratic Oath – a modern version by Dr. Louis Lasagna, former Principal of the Sackler School of Graduate Biomedical Sciences and Academic Dean of the School of Medicine at Tufts University states “I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug.” It also states “I will remember that I do not treat a fever chart, a cancerous growth, but a sick human being, whose illness may affect the person’s family and economic stability. My responsibility includes these related problems, if I am to care adequately for the sick.”

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