How things get distorted
How things get distorted I’ve found a classic example of how the findings of studies can be used to distort the truth. The piece has been floating around on the internet for a few days.
It suggests that women get back to normal psychologically two weeks after finishing breast cancer treatment. Any family, friend, colleague or boss of a breast cancer patient reading this stuff is liable to think that if the person they know is having depression or psychological problems more than two weeks after treatment, there’s something wrong with them.
What’s wrong with the study? Well 94 women isn’t enough for a proper study, they were only drawn from two hospitals and the average of 55 years old is meaningless. You could get the same average by including many women in their 30s and many in their 70s and 80s or just restricting it to women aged between 50 and 60, yet the psychological problems faced by women are going to be different depending on age as well as finances, family circumstances and whether the patient has any other health problems.
It may be that many breast cancer patients do “bounce back quickly” two weeks after treatment, but I suggest they are a minority. And just because you aren’t clinically depressed doesn’t mean that you aren’t dealing with the normal emotional and psychological difficulties that are a normal part of life long after breast cancer treatment has finished. Interesting to compare the tone of this twaddle (see below) with the Dr Peter Harvey article which hasn’t had media spin and tells it like it is.
"Breast Cancer Survivors Bounce Back Quickly
THURSDAY, Dec. 29 (HealthDay News) – Despite the psychological and physical trauma of having breast cancer, most survivors recover their emotional stability quickly once treatment ends, a new study finds.
In fact, most women have adjusted well just two weeks after their last round of therapy, said Teresa L. Deshields, a psychologist and lead author of the study, published in the December issue of Supportive Care in Cancer.
“Most of the [medical] literature hasn’t looked at people as quickly after treatment as we did,” said Deshields, an assistant professor of medicine at Washington University School of Medicine, in St. Louis. “People tend to bounce back quickly.”
While most everyone hit a rough spot, things got better, and they improved quickly, she said: “Most people are pretty resilient. They can deal with traumatic experiences, and come out OK. They can figure out a way to cope with it.”
For the study, Deshields and her team surveyed 94 women drawn from patients of the radiation oncology practice at the Siteman Cancer Center at Washington University and the Barnes-Jewish Hospital. The women were, on average, 55 years old and had stage 0, I, II or III breast cancer at the start of the study. All were finishing the last of a six- to seven-week course of daily radiation treatment. Their other cancer treatments varied, including surgery, chemotherapy and hormonal therapy.
The team surveyed them five times: the first interviews were on the last day of radiation treatment, then two weeks later, then four to six weeks later and then at three and six months after treatment ended. The survey asked about their depressive symptoms and their quality of life, as well as their mood and level of anxiety.
Right after the end of the treatment, the women did report elevated levels of depression and a lower quality of life, although anxiety levels were low, the team found. But by two weeks after the end of the radiation treatment, depression decreased significantly and overall quality of life improved greatly.
“The bottom line is, the majority of patients are doing OK,” said Deshields. “Most of the time [study] results are presented as who is not doing well.”
Her research, for a change of pace, is more good news than bad, she said. Only 6 percent of all the women in the study scored above the clinical cut-off for depression at every time point, she said. And at each survey point, 75 percent of the patients were not clinically depressed.
Deshields said she has never seen the two-week timeframe in other studies measuring emotional recovery. And when the team was designing the study, she had to be talked into measuring mood and depression as early as two weeks after treatment, she said.
“I thought, why are we doing two weeks? One of my co-authors, Tiffany Tibbs, really pushed for two weeks,” she added, noting now she is glad she did.
The study did not ask the women how they coped or what they did to feel better emotionally and reclaim their previous quality of life, said Deshields. She suspects, from her clinical experience, that the coping mechanisms involved an array of measures. “Some may have embraced their religion, some joined support groups, saw a counselor,” she said.
When she counsels those with cancer, she asks them to recall how they dealt with other life difficulties and employ the same strategies.
The findings come as no surprise to Salvatore Maddi, a professor in the School of Social Ecology at the University of California, Irvine. “Radiation treatment itself is so undermining that once it’s over, you are happy,” he said.
Maddi said, however, that another of the findings was interesting: that some of the women were not depressed. “That finding needs to be followed up on,” he said. By looking more closely at these people, he said, researchers might be able to predict who will and won’t have trouble with depression after cancer treatment.
“There might be some way of training people [to be more resilient after cancer treatment],” he said. Maddi’s area of research interest is “hardiness,” which he defines as “existential courage.” He looks at what makes some people more resilient, and he is certain that people can learn hardiness.
I wish I hadn’t read this! I am feeling so angry having read this twaddle !
I can’t help thinking the most significant (and true) part of this article is the quotation: “Radiation treatment itself is so undermining that once it’s over, you are happy”. I think this reflects the situation one sometimes reads about of women who are so relieved and elated at emerging from treatment, and feeling a little “normal” and seeing life with fresh eyes, etc., that they declare “Breast cancer is the best thing that has ever happened to me!”
GRR-RR !!!
— JP — Can I add my GRRRRR to yours please?
Joy x
Grr (2) Can’t believe the rubbish that some comics - opps I meant journals actually publish. Being a “sad” soul I’ve been looking for the original article this afternoon - couldn’t get it (unless I paid) but I did manage to find an email address for Teresa Desheilds so I’ve told her politely what I think of her rubbish.
Stunned I am so taken aback, outraged - whatever that I simply cannot think of a single thing to write about. What a ridiculous article!
bjj
I agree… this actually brings me to recall the words of a doctor who i was “assessed” by with regard to my incapacity benefit claim, they were… " so it’s ONLY the CANCER that bothers you then’'…
needless to say my benefit was stopped, and i was forced to return to work sooner than maybe i was ready both physically and mentally.
i wrote and complained about his attitude and asked how someone with breast cancer can be assessed mentally on the same basis as someone with a bad back, and that only someone with the misfortune to be diagnosed with this disease could possibly know the impact it has and what its like to live with, i am not one of those women who can say " this has opened my eyes, or is the best thing that has happened to me" and i seriously do not believe those who do,
TWO WEEKS!
somebody please wake this person up and give them a shot of reality!
GRRRRRRR definetly is right, short of something very rude…
karen
slp12 Oooh, pleez do tell us exactly what you said to her! Were you really polite??!!
Distortions I’d like to read the questions in the study to see how they were phrased to come with such 'Wonderful positive results".
Two weeks out of radiation, was I relieved that it was over? You bet I was. Was I still down at having no hair and a poor prognosis and feeling tired and worn out from having put a positive slant on everything for six months? You bet I was. I was probably more ‘up’ during treatment as I decided to grin and bear it and make the most of it. After treatment was finished I experienced a feeling of being let down that after going through all of that…there is no real feeling of relief of security that you have completed everything and the disease is over and done with.
With breast cancer I was cut, poisoned, burned and at the end of it was told that there is no way of telling if it worked - I was told only the absence of recurrence will tell if the treatments worked.
Most diseases, you feel worse before treatment and hopefully experience relief and feel better after treatment is over - with breast cancer, I felt great, fit, healthy, just fine going into treatment and now several weeks after completing treatment, I still feel washed out and worried. Am I depressed? Not clinically, but neither am I feeling particularly overjoyed at my situation and I suspect most women feel the same and are worried about their future.
Prof Deshields needs to shake her head.
Grrrr!
Joan
— …I do understand but should we take anything too seriously when it is suggested and co-authored by someone called Tiffany Tibbs! As for Deshields - well she may well come to need them…!
Do not despair at least in the UK we’ve got Professor Lesley Fallowfield (and I hope more like her) who’s an expert on the psychosocial effects of cancer treatment on patients and their treatment by health professionals.
lifesci.susx.ac.uk/pog/fallowfield.htm
She was one of the Professors at Breakthrough’s Research workshop that JaneRA and I attended on 5th December and is very determined that the quality of life of people living after a diagnosis should be properly researched and managed.
I remember seeing her speaking on a programme shown in October 2004. Some of you who’d been diagnosed with breast cancer then may remember. It was shown on BBC3 very late and featured a 50ish woman having a bilateral mastectomy and immediate LD reconstruction as well as interviews with people who’d had breast cancer and medical experts.
Prof. Fallowfield struck me as an impressive professional during her TV interview and that’s how she came across on 5th December as well.
Garbage! I don’t think this woman would recognise depression if it smacked her in the face - which is what I’d like to do right now! Most of us know all too well that the period immediately after treatment ends is often a real ‘downer’ - you feel abandoned by the medical profession and all your family and friends think you’re cured. Yes, there is a sense of relief at finishing the gruelling round of treatment, but it fairly soon dawns on most people that the hardest part - living with the threat of recurrence (and hence having to do it all again) - is yet to come. This is an American study - maybe we Brits are more realistic!
recovery after cancer Hi All
I have to agree with you all here. What a waste of space for an article like this to be published.
My experience has been totally different - being a man - BUT I have to tell you that I was warned about the emotional trauma kicking in after the chemotherapy had finished and - like the stereotypical man - I did not believe it would ever happen to me. I won’t bore you tih the details but it’s been a long struggle for me to come to terms with being “not the same person” as before.
I took part in the BBC film “Breast Cancer - The operation”. They were at my house for two days filming and it was certainly interesting and amzing to watch the skill of the surgeon involved in the operation. It was also interesting to hear that the road to recovery is not an immdeiate thing. Two weeks after treatment ended for men I was still weary from lack of sleep, hyper on dexamethasone, sore form oral thrush, and just then thinking about the long term implications of the diagnosis. Work was the last thing on my mind. That said, I work in education and my job and pay wre protected for most of the time I was off. I cannot imagine how I would have coped if I had to worry about finances as well!!
I suspect the people involved in the study had never, ever, been exposed to the disaese personally or to anyone close to them who had it.
You all take care and have a nice gentle beginning to the New year.
best wishes
Bill
— I don’t want my post diagnosis life ‘researched and managed’ by pseudoscientists. I would like cancer to be adequately medically and scientifically researched and managed so that I can get on with my life without being labelled as ‘depressed’ because I react in an entirely rational way to the horrors of diagnosis and treatment for breast cancer and the threat of death hanging over me. When I look back on my life pre-diagnosis I don’t think anyone could accuse me of lacking ‘existential courage’ or ‘hardiness’ but my cancer diagnosis floored me. I, like all other human beings and unlike dogs (including the Pavlovian ones that will be located somewhere in the antecedencts of Prof Maddi’s research), cannot be trained. It is unhelpful to be labelled as deficient in some way by people who are presumably paid through the public purse to devise so-called theories which are more adequately described as twaddle. All of the money spent on this kind of research should be ploughed into hard scientific research to establish the causes and a cure for cancer. This and this alone will end the existential misery associated with it.
Best wishes
Roisin
Good and bad research I think its important that as people with cancer we learn to distinguish between good, bad and indifferent research. The breast cancer charities and campaigning groups in the US have led the way in running courses for women on scientific and research methods so that as patients we are more able to differentiate between sound and silly research. I wish the breast cancer charities here would run similar initiatives rather than focusing solely on the ‘soft’ end of support.
The research which Daphne has drawn our attention to is clearly flawed but that is not to say that all psycho social research on cancer is similarly poor. I also met Lesley Fallowfield at the Breakthrough Research Workshop and think she is brilliant…leading the way in arguing for research which is not solely focused on searches for cures. (she’s done a lot of work for example on working with consultants on communications skills.)
The reality is that a cure will not be found for breast cancer to help most of us with it now…but we have to live (and many of us learn to die with) with it. People do all respond differently to living with cancer…some people do appear to live with cancer’s consequences more easily than others…or to live with aspects of it more easily…good researchers can help all of us to learn from others’ experiences. Of course I want a cure for cancer, but the search for a cure is not the only place for research funding to be spent.
Jane
— I made my comments precisely because I can tell the difference between good and bad research and between both and basic communication skills which it seems from a reading of these forums many consultants do need to learn. I must point out however that all of the people who treated me had excellent communication skills but were only too aware of the limitatiions of the medicine they could offer me. The National Health Service and the Scientific Research Councils are desperately short of money and yet millions of pounds are spent funding pseudo-scientific work, much of which should not be dignified with the title of research, which ends up at best patronising breast cancer patients and at worst harming them. ‘Research’ that makes me or anyone else feel that I am somehow inadequate, in this case ‘depressed’ because I have to cope with horrible treatment and the realisation that I may well be dying despite it is harmful. The money would be better spent finding a cure so that future generations will not have to go through the nightmare we are living through. Or, failing that, making sure that everyone who could benefit from existing treatments such as Herceptin are not denied it because of shortage of money.
Best wishes
Roisin
— Agree Roisin — Or at least, if not a cure, then a prevention or a control substance that makes us able to live with the disease - as in diabetes or asthma.
Joy x
— sorry — my last post seemed to have gone off topic of being told we are depressed
Joy
Research Funding It may be that so many consultants and health service professionals are so good at communication because they’ve been trained by specialists who focus on psychosocial skills, but there are still enough reports on this forum about callous and uncaring comments to demonstrate that there is more to be done. I’m not particularly happy that funds have to be diverted from finding a cure or gentler ways of treating the physical effects of cancer, but while large numbers of people are faced with living with the aftermath of cancer, I think good quality research has to be funded into quality of life issues.
There’s loads of money already going into research into treatment and cure so I’m not convinced putting more money into that at the expense of psychosocial research is going to deliver benefits to patients any quicker. I’d also like to see more money going into prevention so far fewer people get the disease.
Also should the NHS stop paying for treatments to improve women’s psychological wellbeing, such as reconstructive surgery and counselling and use it to pay for more people to have Herceptin? I think not as it would have a very damaging effect on many people denied these treatments.
Research funding Hi Daphne - I can well recall some years ago my brother returned from Zambia with his children after the breakup of his marriage, only to discover some time later that he had contracted AIDS.
At that time he was close to death and there was a reluctance to treat him with the new combination therapy until I pushed it. He recovered. There was and is no specific support for him - he is not homosexual - nor an addict and he was and is unwilling to join support groups that are primarily and for obvious reasons targetted towards these high risk groups he was and remains totally isolated.
That is the background and context for the point I am about to make. I became involved to a small extent in raising awareness and supporting research into HIV/AIDS, and I can tell you that never ever did I come across anybody working in this field who for one moment didn’t feel that a cure and a quick one at that was the only acceptable outcome. Their whole attitude, posture and resources were focussed toward that outcome, whilst at the same time providing impressive support and care facilities for those already experiencing the effects of the disease. There was certainly an element of rage and a sense of huge injustice that was in complete contrast to our almost passive accepting response. There was certainly a lot of money and huge kudos for the medics as to who would be the first to come up with a cure. Is this quite so sexy in scientific terms? They raised huge amounts of money - why can’t we? Ultimately they made it happen - and I am sure scientifically it was equally if not more complex. I would suggest the difference is in what we as a body of people think is acceptable - what else can it be?
My brother now has what is tantamount to a cure he also has what he perceives is a stigma. I have the opposite