Over the years since our group was formed (back in 2001), we’ve had many people commenting on the perennial problem of tiredness after breast cancer treatment – and not only in the immediate aftermath, but many months and sometimes years after.
I recently retrieved the excellent article printed below, which appeared originally in the Leben Wie Zuvor quarterly Bulletin. It was written by a wonderful woman named Professor Christa Cerni, a research scientist in the field of oncology, for many years a regular contributor to the Bulletin and an inspiring speaker at Leben Wie Zuvor conferences and seminars.
Here’s what she wrote – and if you’re one of those people still suffering from fatigue, months or years on, I hope it will offer some comfort:
“Sorting through my papers recently, I came across an article which deals simply with tiredness after a breast cancer operation. I find it commendable that a number of doctors and scientists not only deal with the medical problems but also increasingly with the general condition of people. It is very positive that such articles are published in the medical literature.
This may not seem like ideal material for an article on New Year’s resolutions. However, it does show that tiredness is simply “normal” even years after an operation for breast cancer and the subsequent treatment. For this reason I think it’s important to tell you this so that you will not be tempted to put on your list of New Year’s resolutions things like: “I must do more”, “I must invite the neighbours for a meal again”, “I must sort through my wardrobe”, “I must….” “I must….” No, you don’t have to do anything! If you feel tired, then you are tired and you have a right to feel tired.
To be tired, even years after a breast cancer illness, is normal for many women, or so the publications say – even when you have long since recovered from the shock of the diagnosis, and the operation and after-care are already things of the past. Dear readers, I thought that if you realise that tiredness and breast cancer go together, then the New Year will not be burdened with ideas for more activity, more energy. Simply allow yourself to be tired and “lazy”.
The publication I am referring to can be found in the American Journal of Clinical Oncology, vol. 18, number 4, pages 743-753. The journal is published by the Society for Clinical Oncology. The title of the article is Fatigue in breast cancer survivors: occurrence, correlation and impact on quality of life. The authors are Julienne Bower, plus five more American women and one man.
Increased tiredness is one of the most common side effects in general cancer treatment. More than 70% of cancer patients who had had chemotherapy or radiation treatment complained about tiredness. Women who were operated on for breast cancer and who had the necessary after-treatment are mentioned with 99 %! The tiredness was especially troublesome if chemotherapy followed directly on from the operation. However, there are different degrees of tiredness, varying from “a little” to “extreme”.
About two-thirds of women operated on for breast cancer graded their tiredness during therapy as “medium” to “serious”. One might assume that some time after all treatment their condition would go back to normal, i.e. “not tired”. Then everything should run as smoothly as before diagnosis. Surprisingly, this is not the case. About one-third of all women remain tired and cannot cope with too much stress. Not just a few months after treatment, no, even years later there is still no “life like before”. The tiredness is deep-rooted in your bones and you cannot shake it off. If you, dear reader, belong to this latter group, don’t despair, you are not alone!
Women who had had breast operations from two big American cities, Washington and LA, were invited for the study I want to report on. Women whose operation and after-treatment happened 1-5 years ago, and who were clinically fully recovered, received detailed questionnaires about the cause of tiredness. Nothing was omitted: physical complaints (i.e. hot flushes, lack of concentration, complaints about scars), additional illnesses (i.e. rheumatism, diabetes), hormonal treatment (e.g. Tamoxifen), financial and family-related situations, physical restrictions because of the breast cancer operation, job and ability to work, sleeping habits, tendency to depression etc. etc. In total, 2000 women took part in this study, which was closed and evaluated in June of 1997. The average age of the women was 55 and most of them had undergone an operation and radiation. Half of them had taken Tamoxifen.
Initially the “no go” and/or loss of energy after breast cancer operations was attributed to the after-effect of therapy. Alternatively it was put down to insecurity, or the anxiety about a recurrence. That has been proven wrong. With regard to physical exhaustion and tiredness, there was only proof in the first post-operative year. From the second year onwards there was an improvement. Therefore it followed that there were different causes.
The evaluated questionnaires were divided into 3 sections: bodily feelings, psychological feelings and social surroundings. Each group of questions comprised many individual questions. The answers to the questions were rated on a scale of 0-100: 100 points for “totally good” and 0 points for “totally bad”. So, everything which was evaluated by the women with an average of more than 50 points was relatively good. If the average was below 50 points, it was relatively bad.
For comparison, data from a similar study in healthy women, but who had an increased risk of breast cancer, was taken. One important statement from this comparison was that women who felt tired, ‘down’ and listless saw this as a considerable restriction to their quality of life. These tended to be younger women with lower income, compared to the “bundles of energy” in the group of fellow sufferers. In this group there was also an increase of complaints about headaches, heart complaints and rheumatoid pain in the joints.
Those women who took Tamoxifen felt on average slightly more tired than those who were not undergoing hormonal therapy. It was surprising that hot flushes and night sweats in particular were found mainly in tired women, whereas these complaints were seldom found in the “not tired” group. These complaints tended to be attributed not to taking Tamoxifen but to the disturbing symptoms of the menopause. In particular, sweating at night tended to impact on the quality of the whole day. Women who suffered from night sweats complained bitterly about not sleeping well. And it is obvious that this leads to tiredness during the day.
In a fairly significant group, tiredness was connected with depression. Feelings such as “everything I do is too much effort for me” and “I just can’t get going” were commented on regularly. As far as I know, this study is the first which concerns itself in great detail with these every-day problems and has shown that there are different causes why women, even a long time after their breast cancer operation, still feel tired. May I suggest that you make it your top priority for the New Year to try and find out with the help of your GP which of these causes can be eliminated?
If you belong to the group of women who suffer from physical complaints, bad sleeping and perhaps even general depression, then you have every right to feel tired. Don’t fight it. Just rest more, relax, and take more breaks. Enjoy not doing anything and, most important, don’t feel guilty. Should anyone around you find it wrong that you are reading a book whilst the sun is trying to shine through the dirty window, that the store room is still chaotic, then point them to this article. And whatever happens, keep on reading that book!”