This project was completed to fulfil a part of the
requirements of a Masters degree at Middlesex University
by
Suzannah Olivier
May 2001
(No part of this report may be reproduced without the express permission of the author)
CONTENTS
• Introduction
• Nutrition as chemoprevention for breast cancer
• Nutritional intervention studies
• Supplement use and chemotherapy
• Use of supplements by breast cancer patients
• Provision of nutrition information by medical practitioners
• Conclusion
• Introduction
• Results of the survey
• Interviews with sub-sample of women
• Interviews with breast care nurses
• Discussion
This project sought to find out if women with breast cancer who participated in the study were seeking nutrition information in relation to breast cancer. It also sought to find out if they were implementing nutritional measures (altering their diets or taking nutritional supplements) with the expectation of improving their health outcomes in relation to breast cancer. The other important theme was to find out if the participants had reported any nutritional changes they made to their medical advisors and whether they perceived that those they spoke with were receptive to discussing the patients’ nutritional findings.
A survey questionnaire was sent to 124 women volunteers, 105 of whom responded. Interviews took place with approximately 10% (n=12) of the respondents to question them about the specifics of nutritional changes they made and the specifics of their discussions with their medical advisors. Interviews also took place with six breast care nurses from six different medical centres with the aim of understanding their perspectives on the issues being investigated.
The survey concluded that a high proportion of women are seeking nutritional information and are implementing nutritional measures. The women who participated in the study were, in the main, unsatisfied or fairly unsatisfied with the responses they received from their medical advisors to their questions regarding nutrition. There appeared to be a disparity between the needs of the survey participants for such information and the ability of the medical centres to provide information. Several recommendations are made to integrate the provision of nutritional information into routine cancer care on a local and national basis.
Further research is needed to replicate the study within the context of a hospital setting with a wider cohort of project participants.
Introduction
The possible impact of nutritional factors on the causation of breast cancer has been widely researched in the last thirty years and was recently summarised by the World Cancer Research Fund (1997). Only recently, however, has emphasis been put on research that pursues the question of using nutritional intervention as a potential means of reducing recurrence in breast cancer patients. Yet many popular books are available which explore this theme (Plant 2000, Olivier 1999, Quillin 1994), and the subject of nutrition is regularly reviewed in the popular press and women’s interest magazines (Marino et al1999), though there is a strong possibility that women remain confused about the relationship of diet to breast cancer risk (Spittle 1999). The general trend in medical treatment has moved towards an atmosphere of ‘informed choice’, specially trained breast care nurses have become available to patients at most cancer treatment centres in the last ten years, and a number of breast cancer support groups have been established in most geographical locations in the UK. The changes have both resulted from and contributed to breast cancer patients actively seeking further information and self-determination regarding breast cancer. Alongside this there has been a burgeoning interest in nutrition in relation to breast cancer evidenced by the large volume of sales of popular books on the subject (source: Booktrack).
Nutrition as chemoprevention for breast cancer
Reddy (1996) and Taylor et al (1997) discuss how the basis for chemoprevention studies with regard to cancer have followed-on from results from epidemiological studies and experimental studies on animals. There has been criticism regarding he effectiveness of studying nutrition by these means in terms of understanding if dietary changes can make a difference to morbidity and mortality of breast cancer patients and Riboli et al (1996), Taylor et al (1997) and Prasad et al (1998) have expressed the view that rethinking of study methods are needed. Pierce et al (1997), Schatzkin (1997) and Stoll (1996) note that results from epidemiological studies point to the possibility that nutrition might be successfully used as an intervention with breast cancer patients.
Other intervention studies have shown physical changes in breast cancer patients making dietary changes. These physical changes include changes in factors which suggest improvements in breast cancer risk. They include serum oestrogen concentration level changes (Rose et al 1991, Woods et al 1996), increased excretion of oestrogens in stools (Woods et al 1989), changes in radiological features of the breast (Boyd et al 1997) and altered DNA patterns (Fürst et al 1993).
Nutritional intervention studies
Mertz (1994) observed that reliance on foods as the primary approach to promoting health and disease prevention is the most sound nutritional strategy, and Maxwell (1999) concluded that nutritional supplements are unlikely to be a convenient short cut in the absence of a healthy lifestyle. However, while it is likely that people who take nutritional supplements are those who are most likely to reach the official RNIs (reference nutrient intakes), Stampfer et al (1993) suggested that the amounts of nutrients needed to prevent disease may exceed that which can be provided by diet alone, and Reynolds (1994) comments that currently recommended levels may be set too low on the basis of new knowledge of micronutrients and disease prevention. As Prasad et al (1998) suggest, future studies of antioxidants must use multiple antioxidant vitamins at moderately high, but not toxic, doses to assure maximal effect on reduction of cancer incidence.
Studies have been published which examine the feasibility of introducing nutritional intervention studies with breast cancer patients (Pierce et al 1997).
The use of dietary supplements (vitamins, minerals, herbs and ancillary supplements) is an area which is currently fairly controversial and researchers are cautious about recommending particular micronutrients for the prevention of cancer (Schorah 1999). The assumption that supplementation will be efficacious cannot necessarily be drawn from the results of epidemiological studies which suggest benefit from particular nutrients. This was highlighted by The Alpha-Tocopherol, Beta Carotene Cancer Prevention Study Group (1994) which looked at supplementing smokers with beta-carotene. The study was stopped at an early stage due to an increase in lung cancer incidence amongst participants.
Where supplement information is available, the studies are based on US brands (Newman et al 1998) and no equivalent UK studies have been found by this researcher. This has implications for accuracy of UK epidemiological studies if a significant proportion of the breast cancer population are taking supplements, and Rock et al (1997) and Patterson et al (1998) have observed that supplement use can contribute substantially to nutrient intakes in the population under study. According to Patterson et al (1997 and 1998) a principle source of error is inaccurate assumptions about the micronutrient composition of multiple vitamins and minerals.
The view has been expressed by Prasad et al (1998) and Maxwell (1999) that trials to date have not demonstrated benefit. Yet others, Taylor (1997) and Patterson et al (1997), conclude that the first generation trials for chemoprevention of cancer using supplements has yielded a number of promising leads.
Supplement use and chemotherapy
Concerns have been raised about antioxidant supplements interfering with chemotherapy and radiotherapy efficacy. Labriola (1999) concluded that there is sufficient understanding of the mechanisms of action of both chemotherapeutic agents and antioxidants to predict where caution should be exercised. Lamson & Brignall (2000) undertook a meta-analysis of 93 papers and concluded that the majority of in vivo and in vitro studies showed a beneficial or neutral effect of antioxidants on oncology intervention, and only three studies demonstrated a negative effect in vivo. Yet another review by Conklin (2000) found that the majority of nutrients supplemented either had an enhancement of chemotherapy action or that, with a small number of documented possible exceptions, no difference was made, or that there was no effect or interaction. Lamson & Brignall (2001) in an overview of dietary intervention and supplemented nutrients as chemoprevention, concluded that nutritional intervention represented a viable intervention on a par with the anti-oestrogen drug Tamoxifen.
Use of supplements by breast cancer patients
The extent to which breast cancer patients make dietary changes when compared to controls who have not had breast cancer has been examined by Jaiswal et al (2000) who found that women who have breast cancer avoid specific foods in order to improve prognosis and prevent recurrence.
Rock et al (1997) found that 80.9 per cent of breast cancer patients took dietary supplements from a multi-centre study, but as the majority of participants (84 per cent) were from California this may have had a bearing on the results. While it is quite likely that the figures are much lower for breast cancer patients in the UK, these figures compare to around 33 per cent of the general population taking supplements on a regular basis in the UK (HSIS 2001). Concerns have been raised about the possibility of excessive intakes by patients self-prescribing nutritional supplements, but an analysis by Rock et al (1997) of supplement use by 352 breast cancer patients found that frequency of excess intake did not exceed five per cent and duration might have been short as supplementation was significantly less likely at 36 to 48 months following diagnosis than at <12 months (Newman 1998). It is likely therefore that any excess intake might be for a short duration.
Stewart et al (2001) examined the belief systems of 378 long-term survivors (mean 8.6+/-11.8 years) of breast cancer regarding the reasons for their survival and found that a positive attitude (60.0%), healthy lifestyle (40.3%), exercise (39.4%), stress reduction (27.9%) and other attributions, were believed to have contributed to their survival. It is likely that these belief systems are strong motivators for a significant minority of breast cancer patients to seek out nutritional information and make nutritional changes after diagnosis of breast cancer. The Million Women Study, now being surveyed in 2001 (Beral), which asks women if they have used a special diet’ or ‘diet supplements (eg vitamins etc)’, is the first indication of an attempt to collate information on a national level in the UK regarding nutritional changes that women make in relation to breast cancer.
Provision of nutrition information by medical practitioners
Moore et al (2000) expresses the opinion that there is now an international consensus regarding diet for prevention of cancer, but that there is currently a mismatch between the attitude of the public who appear willing to accept dietary advice from medical practitioners and a reluctance on behalf of these professionals to fulfil this role. According to Halstead (1999) and Moore et al (2000) a major reason for this reluctance is the lack of nutrition education received by these professionals. Suggested approaches to rectify this situation is for the role of nutrition to be put on the health care agenda, for cost-effective integration of nutritional concepts into medical practice and the provision of clinical nutrition educators.
Conclusion
Following the literature overview the indications are that a proportion of breast cancer patients are making nutritional changes, including supplement use, and that medical services might not be fully aware of these. The literature review has highlighted several reasons why it might be appropriate for researchers and physicians to be aware of dietary and supplement changes by patients. These reasons include ensuring the accuracy of studies, monitoring patient nutrient intakes and the question of use of supplements during hospital treatments. It seems likely that the increased availability of nutritional information relation to breast cancer, available to the public both via databases and summarised in popular books, has led to a need for unbiased nutritional advice from the medical profession by a proportion of breast cancer patients. This project is seeking to substantiate if these themes are a common experience.
INTRODUCTION
Many women who are diagnosed with breast cancer are aware that nutritional factors may be associated with breast cancer risk and significant proportion of women also choose to modify their diets (Jaiswal et al 2000, Rock et al 1997). Monitoring food choice patterns, and nutritional supplement use by women with breast cancer will provide health professionals and researchers with information about nutrient intake in women with breast cancer. Dietary advice gleaned from the popular media with regard to breast cancer affects food choices, and can influence adherence to, or detraction from, health department dietary guidelines. Information in the literature suggests that monitoring dietary changes and supplement use is of importance for clinical trials that focus on preventing breast cancer recurrence (Rock et al 1997).
The main theme of this project is to find out if women who participate in the study are seeking nutrition information of their own accord and implementing nutritional measures with the expectation of improving their health in relation to breast cancer.
The other important theme of this project is to find out if the participants reported the nutritional changes they make to their medical team and also to look at whether they perceived that their medical teams (surgeons, oncologists, nurses, hospital dieticians) were receptive to discussing the patients’ nutritional findings.
RESULTS OF THE SURVEY
One hundred and twenty four forms were sent to project volunteers, and 105 were received back completed. The range of years since diagnosis was 1-20 with a mean of 3.86 years. Fifteen women (14.3%) had been diagnosed with recurrence.
Ninety-seven of the 105 respondents (92%) had made efforts to find out information about nutrition in relation to breast cancer from a variety of sources. Table 1 shows the sources that women used to educate themselves about nutrition.
| SOURCES OF NUTRITIONAL INFORMATION | No OF
WOMEN USING SOURCE (Total n=97) |
% (rounded) OF USED USING SOURCE WOMEN |
| Books | 86 | 88.5 |
| Magazine & Newspapers | 54 | 56 |
| Talks, Lectures, etc* | 50 | 51.5 |
| Support Charities | 46 | 47.5 |
| Natural Health Therapist (ie herbalist, naturopath) | 37 | 38 |
| Marketing Literature | 33 | 34 |
| Nutrition Consultant | 32 | 33 |
| Internet | 25 | 26 |
| Health Food Shops | 22 | 22 |
| Friends | 9 | 9 |
| Other | 2 | 2 |
Table 1
* This figure may not be representative as a large proportion of the women were recruited via talks
The total number of sources for nutritional information was also logged. Table 2 shows the number of sources in total that women used to find information.
| TOTAL NUMBER OF SOURCES | NUMBER
OF WOMEN (Total n=104) |
% (rounded) OF WOMEN USING No. OFSOURCES |
| 10 | 1 | 1 |
| 9 | 1 | 1 |
| 8 | 2 | 2 |
| 7 | 3 | 3 |
| 6 | 14 | 13.5 |
| 5 | 22 | 21 |
| 4 | 16 | 15.5 |
| 3 | 17 | 16 |
| 2 | 18 | 17 |
| 1 | 10 | 9.5 |
| 0 | 1 | 1 |
Table 2
Of the total survey participants (n=105), 39 (37%) also asked their hospital medical team for dietary/ nutritional information and Graph 1 describes the broad categories of advice they were given, split by women who eventually changed their diet and started taking supplements (n=32) and those who only changed diet (n=7) (no women took supplements only).
The advice given by their medical teams was: Diet is not related to breast cancer at all (n=5) 13%; Just eat a balance diet (n=11) 28.5%; Given some more detailed information such as a diet booklet (n=13) 33%; No advice given at all (n=10) 25.5%. An additional 8 women, who did not request dietary/nutritional information, were given information by their hospitals (Eat a balanced diet n=4; Some more detailed information such as diet booklet n=4).
Women were asked to grade their level of satisfaction on a Likert scale of 1 to 4 regarding the support they got from their medical team when asking about nutrition information (1=unsatisfied, 4=very satisfied). Graph 2 describes the results from all 47 women who received information. The mean level of satisfaction was 1.48.
Graph 2
After finding information about nutrition and breast cancer, 75 of the 105 project participants (71.5 %) made both dietary and supplement changes, while 19 women only made dietary changes and 7 women only took nutritional supplements (vitamins, minerals, herbs or ancillary supplements). Four made no changes at all. These figures are summarised in Graph 3.
Forty-six (45.5%) of the 101 women who made changes discussed the changes they made with their medical team. The satisfaction with the response after discussing nutritional changes with the medical teams (using the same 1-4 satisfaction scale as described above for Graph 2) is outlined in Graph 4.
The mean level scored for the general helpfulness of the medical teams when discussing nutritional changes was 1.8 which was slightly greater than the score for satisfaction of 1.48 (summarised in Graph 2). This could possibly reflect later discussions taking place on a more ‘educated’ level.
No differences were noted in satisfaction levels in relation to age, geographical location or professional status, but a difference was noted to the perceived helpfulness by National Health Service (NHS) and Private patients. NHS patients scored a mean of 1.62 while Private patients scored a mean of 2.06. These are summarised in Graph 5.
Graph 5
* The bars relate to the actual number of people, while the lines related to the percentage. Therefore the actual number of NHS/Private patients scoring ‘2’ are the same but a higher proportion of Private patients scored ‘2’.
The survey participants were asked what part they believed nutrition might play in treatment or recovery from breast cancer. The answers are summarised in Table 3.
| THE PART THAT NUTRITION MIGHT PLAY IN TREATMENT/RECOVERY FROM BREAST CANCER | NUMBER OF WOMEN EXPRESSING THIS VIEW (Total n=101) | % (rounded) OF TOTAL WOMEN |
| Help Recovery | 48 | 48 |
| General Health Improvement | 25 | 25 |
| Feel the need to help oneself | 12 | 12 |
| Reduce side effects of treatment | 9 | 9 |
| Unsure | 5 | 5 |
| None | 1 | 1 |
| Can cure cancer | 1 | 1 |
Table 3
One hundred and one women out of the 105 respondents expressed the desire to speak to a health professional regarding nutrition and breast cancer. The preferences noted about which type of health professional they would like to be able to speak to are summarised in Table 4 (the women had the option to select more than one option).
| HEALTH PROFESSIONAL THAT WOMEN WOULD IDEALLY LIKE TO DISCUSS NUTRITIONAL INFO. WITH | NUMBER OF WOMEN WHO CHOSE THIS OPTION | % (rounded) OF WOMEN (Total n=101) |
| Nutritionist working with medical team* | 66 | 66 |
| Breast Care Nurse | 64 | 64 |
| Surgeon or Oncologist | 51 | 51 |
| Dietician | 50 | 50 |
| GP | 35 | 35 |
| Chemotherapy Nurse | 24 | 24 |
Table 4
* The option of ‘Nutritionist working with medical team’ is a hypothetical choice as no such person currently exists. Women scoring the questionnaire may not have had a clear knowledge of the difference between a nutritionist (or nutrition consultant) and a dietician, though as the different scoring suggests there was some difference in perception between the two professions.
INTERVIEWS WITH SUB-SAMPLE OF WOMEN
Interviews were conducted with about 10% of the project participants (n=12). The sub-sample for interview were chosen on the basis that they replied ‘Yes’ to both questions asking if they had changed diet and started supplement use with the expectation of changing their health in relation to breast cancer. From this group of participants the 12 subjects were then chosen at random. They were questioned about the extent of dietary changes they made, the type and dosages of supplements they used, how soon they instigated changes after diagnosis of breast cancer, whether or not they had discussed the changes with their medical advisors and the responses they received. They were also asked about their ages, grade of cancer diagnosed, and the number of years since diagnosis. The numbers of years since diagnosis for this sub-group ranged from 1-15 years, with a mean of 3.83 years. This was very similar to the mean of all the project participants which was 3.86 years.
The dietary strategies reported by the women who were interviewed are summarised in Table 5.
| DIETARY STRATEGIES ADOPTED BY SUB-SAMPLE | No OF WOMEN MAKING CHANGE (Total n=12) | % (rounded) OF WOMEN MAKING CHANGE |
| Avoiding dairy products | 10 | 84 |
| Increasing fruit/vegetable intake and/or fresh juices | 9 | 75 |
| Eating more fish | 9 | 75 |
| Avoiding coffee and drinking herbal/green tea | 9 | 75 |
| Avoiding alcohol | 8 | 67 |
| Incorporating soya products | 5 | 42 |
| Eating mainly organic food | 5 | 42 |
| Avoiding meat | 3 | 25 |
| Cutting out refined foods and sugar | 2 | 17 |
| Adopting a vegan diet (ie: no eggs, dairy, etc) | 1 | 9 |
Table 5
The dietary changes and supplement intake of the sub-sample of women were evaluated and allocated to categories depending on the extent of the measures. Table 6 shows the scale used to categorise the changes in diet and supplement use.
|
SCALE CODE |
DIETARY CHANGES |
SUPPLEMENT INTAKE |
|
1 |
Minimal - eg: eats less meat and more fish |
Minimal - eg: multivitamin or antioxidant and 1 x vitamin C supplement |
|
2 |
Moderate - eg: many changes but within parameters of current dietary recommendations of the British Nutrition Foundation (1998) |
Moderate - eg: list of 4-8 supplements, but within safe limits according to the Council for Responsible Nutrition (CRN 2001) |
|
3 |
Extensive - eg: switched to a vegan or macrobiotic diet |
Extensive - eg: 9+ supplements or specific programme for symptom alleviation during hospital treatment but within recommendations of CRN (2001) |
|
4 |
Radical - eg: Gerson Therapy (1997) or Dries Cancer Diet (1997) |
Radical: (eg: higher doses being used than those recommended by the CRN (2001) |
Table 6
There were no relevant associations between age, years since diagnosis or grade of cancer at diagnosis and the degree of changes made to diet or to nutritional supplement use.
There was, however, a positive association between immediate or delayed implementation of nutritional changes and the degree of changes made to both diet and nutritional supplement use. Six of the 12 interviewees (50%) reported making changes immediately upon diagnosis and during hospital treatment, while six of the 12 interviewees (50%) took at least six months, and up to three years to make changes. The mean grading, using the scale described in Table 6, for those who delayed nutritional changes was 1.5 and 1.6 for diet and supplement use respectively, and the mean grading for those who instigated immediate changes was 2.3 and 2.6 respectively and is described in Table 7.
|
DIETARY CHANGES |
SUPPLEMENT INTAKE |
|
|
Delayed nutritional changes (n=6) |
||
|
Subject 1 |
1 |
1 |
|
Subject 2 |
2 |
1 |
|
Subject 3 |
1 |
1 |
|
Subject 4 |
2 |
2 |
|
Subject 5 |
2 |
3 |
|
Subject 6 |
1 |
2 |
|
TOTAL: 9 (Mean 1.5) |
TOTAL 10 (Mean 1.6) |
|
|
Immediate nutritional changes (n=6) |
||
|
Subject 7 |
2 |
2 |
|
Subject 8 |
3 |
4 |
|
Subject 9 |
2 |
3 |
|
Subject 10 |
3 |
2 |
|
Subject 11 |
2 |
2 |
|
Subject 12 |
2 |
3 |
|
TOTAL: 14 (Mean 2.3) |
TOTAL: 16 (Mean 2.6) |
Table 7
Of the 12 women in the sub-sample, five did not discuss the changes they made to their diets or use of supplements with their medical team. The reasons given are summarised in Table 8 (some women gave more than one reason).
| REASONS FOR NOT TALKING TO MEDICAL TEAM RE CHANGES MADE TO DIET AND TAKING SUPPLEMENTS | No OF WOMEN EXPRESSING THIS VIEW (Total n=5) |
| Medical staff seemed too busy | 3 |
| Not a good dialogue with medical staff | 2 |
| Did not think about doing so | 1 |
| Felt depressed | 1 |
Table 8
Of the seven remaining women who did discuss the changes they made with their medical teams, the responses they reported are summarised in Table 9 (all women gave more than one response).
| RESPONSE RECEIVED FROM MEDICAL TEAM WHEN DISCUSSING CHANGES TO DIET/SUPPLEMENTS | No OF WOMEN DESCRIBING THIS RESPONSE (Total n=7) |
| If it makes you feel better/does no harm/go ahead | 6 |
| Different belief system/not interested In ‘optimal health’ | 3 |
| No evidence for supplements/concern regarding possible side-effects | 2 |
| Non-committal | 2 |
| Felt dismissed/patronising | 2 |
| Medical staff pleased/surprised with medical progress/recovery (ie: recovery from surgery/reduced side effects) | 2 |
| Eat a sensible/healthy diet | 1 |
Table 9
INTERVIEWS WITH BREAST CARE NURSES
Interviews were conducted with 6 breast care nurses (BCN) from 6 different hospitals covering three geographical locations. These interviews highlighted several common themes:
• One BCN estimated that 25 of her patients asked about nutritional information, three thought the figure was about 30% for their hospital, while two BCN estimated that 50% of their patients were asking about nutritional information. The mean of these estimates is 35.8%.
•
The BCN reported that their patients most frequently cited the following reasons, summarised in Table 10, for wanting to know about diet and nutrition:| REASONS CITED BY PATIENTS FOR ASKING BCN ABOUT NUTRITION | No OF BCN MENTIONING THIS REASON |
| Avoiding cancer recurrence (mainly asked by those newly diagnosed and those diagnosed with recurrence) | 4 |
| Quality of life/Taking control | 4* |
| Preventing side-effects of treatment (iesickness/tiredness and chemotherapy orhot flushes and Tamoxifen | 3 |
| Weight reduction | 1 |
Table 10
*6 BCN gave this as a good reason for them to support patients in making changes if they wished to, but only four said that their patients cited this reason themselves.
•
Despite such a high percentage of patients appearing to ask about nutritional issues, none of the BCN reported that their whole medical team had discussed this issue, and none of the BCN reported that a unified approach was taken by the whole medical team on this matter. It was left up to individual discretion about how to deal with the questions from patients.• None of the BCN felt able to adequately respond to the questions being asked, though one BCN did mention that if pressed for information she would make a point of finding out an answer.
• Several constraints were felt by the BCN regarding dealing with questions about diet and nutrition. The main ones were:
•
The main advice given, by all the BCN, when asked about diet, was to ‘eat a balanced and healthy diet’. No description was given about what a balanced and healthy diet constituted.• None of the BCN referred patients to the hospital dieticians other than very occasionally and usually when pressed by patients. Two BCN commented that they had not thought about this possibility and that it might be a useful way forward. Comments by three other BCN on this subject included ‘the dieticians take a rigid, party line which is not useful to the patients and not what they are seeking’, ‘they have no interest in this approach’, and another one very similar comment.
• Two of the hospitals at which the BCN worked had a complementary centre nearby or attached to the hospital to refer patients to and found this extremely useful, a third BCN mentioned that one was going to become available in the near future. One of the BCN had taken the initiative of organising a talk regarding nutrition and breast cancer for their young women breast cancer support group.
• The main reason given/perceived value for supporting patients with their interest in diet and nutrition, cited by all BCN, was to ‘give back some degree of control to the patient’.
5.5 DISCUSSION
The following main categories are worthy of comment and are aimed at exploring the main themes of the project as described in section 5.1:
5.5 (i) Numbers of women seeking nutritional information and discussing their findings with their medical team.
This study found that a high number of the 105 women surveyed sought nutritional information (n=97), and a significant proportion, (37%) of these sought to discuss this information with their medical teams (n=39). 101 made dietary and/or nutritional supplement changes of whom 47% (n=47) discussed these changes with their medical team. An influencing factor on these findings, however, is that the majority, 70% of the 105 participants (n=73) were recruited for the project from self-help groups, talks, or similar, and it is likely that the numbers who seek nutritional information amongst the general population of those with breast cancer is lower. Nevertheless, interviews with six breast cancer care nurses suggested that estimates of 25-50% (mean 35.8%) of their patients were asking about aspects of diet and nutritional intervention, which represents a meaningful number of patients. While the estimates made by the BCN, and the number of women in the survey who said that they discussed nutrition with their medical team, are numerically in the same region, it is not safe to assume that these figures are truly representative.
Results from this study suggest that not all patients necessarily attempt to discuss nutrition with their medical team. Seven of the 12 women (60%) interviewed in the sub-sample, and 53% of the women who filled in questionnaires, did not discuss the nutritional changes they made with their medical team, which might indicate that the actual number of women with breast cancer who seek nutritional information is potentially higher than the mean 35.8% estimate made by the BCN.
Those women who used the greatest number of sources of information with regard to finding out about nutrition as outlined in Table 1, expressed the least degree of satisfaction regarding the response they received from their medical team about discussing their findings and this is summarised in Graph 6 which shows a high degree of positive correlation between the two factors. This is unsurprising but also tallies with the comments made by some BCN regarding some of their patients being very well versed on the subject of nutrition.
It is interesting to note the difference in satisfaction expressed by NHS and Private patients, summarised in Graph 5, and this could be an indicator of the different amounts of time available to spend with patients or, possibly, a greater willingness to discuss peripheral issues to the main question of cancer treatment and rehabilitation in the private sector.
Despite the wide range of years since original diagnosis of breast cancer in this group of women (1-20 years), the mean is a relatively short 3.86 years. Fifteen of the women reported having been diagnosed with recurrence, though it is unknown how many years had elapsed since these recurrences. If they had been asked how recent their recurrence was this may significantly shorten the mean number of years, particularly as nearly 50% of these women (n=7) were originally diagnosed 10 or more years ago, and represent over half of the women from the 105 in the survey who had breast cancer 10 or more years ago. It is possible that most of the participants in this survey might have been particularly interested in nutrition as a result of recent anxiety about their diagnosis and it is not necessarily the case that nutritional issues continue to be a driving force for breast cancer patients several years after diagnosis. Nor, however, can a continued interest in nutrition in later years be dismissed as a possibility.
5.5 (ii) Degree of nutritional changes made by the women in the survey
By far the majority of the 105 women surveyed decided to change both diet and nutritional supplement use after the diagnosis of breast cancer (n=75). A much smaller proportion only chose to change either diet (n=19) or take supplements (n=7) or to make no changes at all (n=4).
Two BCN expressed the concern that some women might take a ‘highly alternative approach by using nutrition’. No-one who applied to participate in the study had taken an alternative approach to treating breast cancer (ie: using diet and supplements instead of medical treatment) and all had been treated at a medical facility. All the women in the survey who used nutrition, did so as an adjunct to conventional hospital treatment.
Specifics of dietary changes and nutritional supplement use were investigated with a sub-sample of 12 women and are summarised in Table 7. There was no evidence amongst these 12 that excess levels of nutrients or herbs were being consumed (with the exception of one woman who was taking high levels (100mg) of zinc, but for three months only).
Of particular note is that the six women in the sub-sample who used nutritional measures immediately after diagnosis of breast cancer did so to a greater degree than those who took longer to introduce nutritional measures. Those who introduced nutrition more urgently scored approximately 50% more on dietary changes and approximately 65% more on supplement use on the scale noted in Table 6 than did those who introduced nutrition at a slower pace. Additionally 50% (n=3) of those who used nutrition immediately after diagnosis used quantities and doses of supplements that could be meaningful in terms of affecting hospital treatment. This is unlikely to present a concern on current evidence as summarised by Lamson & Brignall (2000) and Conklin (2000), but is an issue for medical staff to be aware of, and could be a reason for specially trained nutritionists to work alongside medical staff particularly if this is a factor with a wider cohort of breast cancer patients.
5.5(iii) Comments on interviews with breast care nurses
The first concerns of medical staff must be obviously be medical treatment, and while there was a general lack of satisfaction, and some disappointment expressed, amongst the survey participants for the manner in which nutritional questions were dealt with by their medical teams, many participants commented that they had been very happy with their medical treatment (these were free-form comments as this question was not included in the survey form).
Within the context of an over-stretched profession working with limited resources, peripheral issues (as the interviews suggested nutrition is perceived to be), such as nutrition, were not viewed as being a priority. This was evidenced by the lack of discussion as to where nutritional issues fitted in at regular team meetings and the lack of unified approach to dealing with nutritional questions. As the medical profession are bound to practice evidence based medicine it is not surprising if the lack of consensus amongst researchers on the place that nutrition has to play in prevention of recurrence of breast cancer leads to a lack of confidence in nutritional issues or to a lack of policy. On the other hand non-discussion could be viewed as a form of collusion. If forced to make a policy decision the approach could just as easily err on the side of caution and decide to not encourage it at all. Notwithstanding this there is a move to integrate nutritional issues into main-stream medicine in some quarters and an extensive body of research has built up regarding nutrition and breast cancer prevention. It is also clear that women are seeking nutritional information and making changes which in some cases can be extensive. This is a reason for the medical profession to become more aware of the issues surrounding nutrition as a chemopreventive adjunct to hospital treatment. It did appear, from the interviews with the BCN, that there was some sympathy for the inclusion of nutritional measures amongst their patients’ regimes. All the BCN said that this surge of interest had happened in recent years (from 3-5 years) and it seems that the change in patients’ awareness of nutrition has almost crept up on the BCN who are not prepared for this interest. Integrative medicine has recently been flagged as an important issue for the medical profession to take on board by the House of Lords Select Committee on Complementary and Alternative Medicine (2000).
Issues such as the ability to work within a positive framework and ‘taking control’ was given highest weighting by all the BCN and it seems that nutritional issues fit in with this paradigm – despite patients in the survey giving more weighting to nutrition being of use for recovery (48%) or general health improvements (25%). The breast cancer nurses did not feel informed enough or able to discuss nutritional issue in any depth. This led to lack of discussion or superficiality, which is what many of the survey participants highlighted as a reason for their dissatisfaction. Four of the 6 BCN agreed that in an ideal world they would like to have the services of a nutritionist trained to deal with issues surrounding cancer available to answer patients’ questions if required, though the logistics and practicality of this were not addressed, nor were issues of viability. Yet very few nurses referred interested patients to the hospital dieticians for a variety of reasons as summarised in section 5.4. While two BCN had complementary centres nearby to refer patients to, none seemed to have available the type of resources information books such as the Royal Marsden publication for patient information (2000) detailing nutritional facilities.
This study suggests that the health professionals associated with the women who participated in this study are unaware of dietary choices and supplement use that may affect nutrient levels in their patients and which might also affect studies being conducted.
There is a groundswell of interest in nutrition by women who are diagnosed with breast cancer. Health professionals may not be fully aware of the desire by patients to discuss nutritional changes with a suitably qualified member of the medical team. It seems likely that the increased availability of nutritional information relating to breast cancer, both available to the public via research databases and summarised in popular books, has led to a demand for unbiased nutritional advice by a proportion of breast cancer patients. This need is outstripping the ability of the health care provider services to satisfy this demand.
While medical teams need to practice evidence-based medicine, the reality is that a proportion of their patients are likely to be making nutritional changes that it may be useful for them to understand. There are likely to be merits for the medical facilities to include the services of nutritionists, as is done with psychological support services at some cancer treatment centres. These merits include understanding what their patients are actually doing which may assist in framing the management of those patients in a meaningful way for the patients, and which may increase positive health behaviour in patients. There is also likely to be a better understanding of how nutritional intervention may influence epidemiological studies, and offer some basis for further nutritional intervention studies. There is a call by the medical profession for more research to be carried out for them to feel confident about making recommendations, and by patients for the availability of integrated medicine. A way for these two aims to be realised is to offer nutritional support within the hospital setting.
Integrating the provision of nutrition information into routine cancer care can be achieved on several levels:
• On an individual level, breast care nurses and other medical staff, who are interested to do so, could read some of the more successful and popular books that their patients are reading, in order to inform themselves of what is motivating their patients. By reading this information it does not pre-suppose that they are condoning or advocating these approaches, but simply improving their understanding of the subject.
• Breast care nurses might also find it useful to contact suitably qualified nutritionists in their area to invite them to give talks to any breast cancer support groups they are involved with, which might go some way to satisfying the demands of patients for more information.
• On a short-term institutional level, preparing suitable information leaflets for patients who enquire about nutrition is a way forward and a way of optimising the time and resources of the breast care nurses. These leaflets could outline ‘balanced eating guidelines’ as well as exploring some of the other nutritional approaches that are taken. These leaflets do not have to take a stance on any one approach, but inform about what the different types of diets principally involve, where local nutritional support can be found and suitable websites to look at.
• Access to a library, or working alongside a local library in a structured way, and an information officer to help patients find the data and resources they are interested in sourcing, might be a sustainable and positive way of meting the needs that breast cancer patients are voicing.
• On a longer-term institutional level, complimentary medicine centres are becoming increasingly available. The medical staff at hospitals can forge links with these centres by taking an interest in what they are doing. If these centres have a nutritionist working with them, it could be appropriate for a dialogue to take place between the nutritionist and the key medical staff at a centre. Finding common ground would be a positive way forward.
• On a national level, the training of breast care nurses, and other medical staff who interface directly with patients, could include an overview of the key nutritional issues that patients are likely to be interested in. Again this does not involve condoning any particular course of action but could be aimed at just being aware of the issues on which a proportion of patients are focussing.
• Ultimately the provision of nutrition education and the provision of clinical nutrition educators as a part of the core curriculum for general practitioners, nurses, breast care nurses and medical specialists probably needs to be considered. The question of specialist nutrition consultants working within the oncology field could also be a serious consideration. Training and operating parameters would first need to be identified.
It is the hope of this author that a drive by the medical profession to address the issues surrounding nutrition for breast cancer patients could lead to improved patient/hospital communication, forward the cause of integrated medicine and, ultimately, improve the health outcomes for patients.
Further research would need to replicate this survey within the context of the hospital setting using wider cohorts of project participants.
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