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