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Article type: Editorial
Keywords: male breast cancer, Breast International Group, Fatima Cardoso, .
This article has 9 comments
Stop excluding male patients
Male breast cancer is a rare disease, accounting for less than 1% of all breast cancers worldwide but how does their disease differ from breast cancers in women? Fatima Cardoso explains why men should be included in breast cancer trials.
» Fatima Cardoso
Male breast cancer is a rare disease, accounting for less than 1% of all breast cancers worldwide. According to the American Cancer Society, last year it was expected that around 1910 men would be diagnosed with breast cancer in the US with around 440 deaths, compared with around 192,370 expected new cases and 40,170 deaths among women.
Male breast cancer patients go through their difficult fight with very little support, while having to cope with the additional stigma of having a ‘female disease’. They also suffer from a lack of evidence on how best to manage their disease. Not a single randomised phase III trial has ever been concluded on male breast cancer. As a consequence, management of male breast cancer is mainly done by extrapolation from its female counterpart.
The Breast International Group and the North American Breast Cancer Groups have now joined forces to launch a three-part international research programme for male breast cancer, coordinated by the EORTC. It has kicked off with a meta-analysis of clinical data and a central pathology review of tumour specimens from about 1700 male breast cancer cases diagnosed in participating institutions over the last 20 years. Part 2 of the programme will involve building a prospective international registry of all male breast cancer cases diagnosed at participating institutions over a two-year period, to collect data on demographics, risk factors, treatment and outcomes. Funding is being sought to finance a central analysis of the biological material collected, with a virtual tumour bank being used in the meantime.
The intention is to proceed to a randomised clinical trial of endocrine therapy, which could be launched as part 3 of this programme. In view of the failure of all previous attempts to run a clinical trial in this setting, a fully committed international effort will be indispensable.
Securing funding for such a non-drug related, purely academic effort has been a daunting process, demonstrating once again the need for a central funding body in Europe. While continuing to look for additional sources of funding, work on the retrospective analysis has already begun thanks to support from the US Breast Cancer Research Foundation which is also funding the BIG--NABCG collaboration that is running the three-part programme [added 02/03/2010].
This research programme could greatly enhance our knowledge of the biology of male breast cancer – an essential first step to guide the development of future therapies. While waiting for the results, a plea is made to all those involved in the design and implementation of breast cancer trials to stop excluding male patients without a good reason. If excluding male patients from endocrine therapy trials may be understandable, excluding them from trials of cytotoxic and biological agents is not. Cancer societies and organisations also need to play their part, by increasing efforts to raise awareness and establish support groups for these patients.
Fatima Cardoso is a medical oncologist from the Jules Bordet Institute in Brussels, Belgium, and is the principal investigator of the International Male Breast Cancer Programme. e-mail: Fatima.cardoso@bordet.be
COMMENTS (9)
| Professor Dr. med. Hans-Joerg Senn, St.Gallen (Male breast cancer) says: | 27 February 2010 10:23:58 |
| Please write your comment here Dear Fatima, Thank you for this impoortant initiative! We were recently thinking also aling these lines as we constantly treat several male breast cancer patients in our center - and nobody knows exactly, if we really should treat them (especially in the adjuvant setting)like the female patients, regarding their different hormonal background! We are interested in the program and I would nominate Professor Dr. med. Florian Otto (Otto = family name!) from our Center to be your contact partner. He would be also interested in co-chairing such a European program. Thank you and best regards from St.Gallen to Brussels! Hans-Joerg Senn Professor Dr. med. Hans-Joerg Senn Tumor- and Breast Center ZeTuP Rorschacherstrasse 150, CH-9006 St.Gallen, Switzerland Tel: +41-71-243-0043 Fax: ...0044 E-Mail: hansjoerg.senn@zetup.ch florian.otto@zetup.ch Web1: www.zetup.ch Web2: www.oncoconferences.ch | |
| Woet L. Gianotten (Male breast cancer) says: | 27 February 2010 22:53:09 |
| Dear Dr Cardoso, Recently, in their Committee Report from the International Consultation for Sexual Medicine, Sadovsky et al (2010) showed the wide range of sexual concerns, sexual dysfunctions, lost sexual self-image, and relationship distress in women with breast cancer and in survivors. However, it is common to pay little or no attention to these sexual and intimacy aspects of breast cancer and its treatment. This to the detriment of the women’s quality of life. Here we talk male breast cancer. You need very little imagination to understand that in those males with breast cancer sexuality, sexual identity and sexual relationship easily will be corrupted. You apparently have influence in the development of the new male breast cancer program. Could I advice you not to copy the average routine of female breast cancer, where sexuality is not addressed. But consider from the very start to include the areas of sexual function, sexual identity, and sexual relationship in your research. Ref: Sadovsky R, Basson R, Krychman M, Morales AM, Schover L, Wang R, Incrocci L. Cancer and sexual problems. J Sex Med 2010;7:349-373. Woet L. Gianotten, MD-psychotherapist Consultant in oncosexology The Netherlands | |
| Fatima Cardoso (Male breast cancer) says: | 28 February 2010 14:21:15 |
| IMPORTANT ADDITIONAL INFORMATION The Breast Cancer Research Foundation (BCRF) has been the major funding source for the International Male Breast Cancer Program through direct funding for the retrospective part and indirectly through the funding of the BIG-NABCG collaboration. We would like to publicly express our deepest appreciation for the Foundation's invaluable support without which this project could not be done. | |
| Fatima Cardoso (Male breast cancer) says: | 28 February 2010 14:34:31 |
| Dear Prof Senn and Dr Otto, I have replied to you by email. Dear Dr Gianotten, if you would like to contact me by email we can discuss how best to accommodate your important comment. Best wishes Fatima Cardoso | |
| Bill Steele (Male breast cancer) says: | 01 March 2010 15:59:59 |
| I'm writing to let you know that I am very interested in what you are trying to do with regard to men with breast cancer. However, I disagree with the gender tag applied to men with breast cancer. I do have breast cancer but I do not have MALE breast cancer. brest ancer is not a gender specific disease. I agree, the support system for men with breast cancer are abysmal and peiople are generally ighnorant of the fact that men can get breast cancer. Please read the short article below which outlines my position on this. I have, for many years, been active in trying to educate people with regard to this. Top of my list is to convince people that women and men can get almost every single type of breast cancer tumour. I would much rather the "MALE" tag was removed when describing men with breast cancer. It is not often that women with breast cancer are described as having "FEMALE" breast cancer. Most men and most women think women are the only ones with breasts. That is, of course, not true. Both men and women have breast tissue and both men and women can get breast cancer. It is unusual in men though. Only up to 300 men a year are diagnosed with breast cancer in the UK each year. The average age of men with breast cancer in the UK is 69 – older than women and age is one of the factors of risk for men to get breast cancer. Another is if the man has close female relatives who have had breast or ovarian cancer; another is obesity; another high level of the female hormone oestrogen and, finally, the last risk factor is associated to men who had large does of radiation as children, perhaps to treat another cancer. In my case, and in the case of many women, I did not have any of the risk factors described above – or outlined for women -and the reason for me getting breast cancer remains a mystery. Even at the point of diagnosis I was concerned that all the information I was given and directed to was written for women and inappropriate to be given to men. I made a decision quite early on in the treatment process that I wanted to be treated like women with the disease. Because men have little breast tissue the only surgical treatment is mastectomy and then the combination, if needed, of chemotherapy, radiotherapy and hormone therapy. The only one I escaped was radiotherapy. And then, because there was a danger of the disease returning to the other side of my chest, I had a second mastectomy. So, here was I, a man in my mid 40s, with four sisters and my mother still living – who have never had a problem with their breasts - undergoing treatment for breast cancer. A cancer diagnosis is a dreadful thing and I have great empathy for all who are given one. Breast cancer is a terrible scourge for the tens of thousands of women who are diagnosed in the UK each year but it is no less of a scourge for the almost 300 men who are diagnosed. In the midst of all the “pink” frenzy of fundraising and awareness raising, it remains a disappointment to me that men still seem to be peripheralised and remain outside the “mainstream” of breast cancer awareness and treatment. This overwhelming woman oriented effort leaves men with the disease isolated from the impressive support systems in place for women with breast cancer. It reaffirms the notion that women are the only ones with breasts and “breasts” are presented and described as attributes of sexuality rather than attributes of functionality. Only 3% of babies were being breastfed at four months old in the UK in 2000. This mixture of societal ownership or presentation of breasts as attributes of sexuality for women places men with breast cancer in a difficult position. It is embarrassing for some men to be diagnosed with breast cancer because men too are socialised into thinking that breasts are only for women. Some would even like the disease in men to be called something else. I would not. I want all men to be treated for breast cancer by the specialists in place to treat the disease. I want men to be given the chance of reconstructive surgery at the point of initial surgery as women are. I want much more inclusive media and charitable effort to be in place to reflect the fact the breast cancer is not a gender specific disease. I want men to be tagged, as women are, with losing something of their sexuality because of breast cancer and being affected by body mage matters after breast surgery and being emotionally affected and physically and mentally debilitated by the treatment and the continuing effects of the treatment. And, after all that ranting, I want just one other thing; for men to be able to access support, help and friendship through a terrible time, to be accepted as a person in need. The KIAMA trust did that for me. I am forever grateful for that act of kindness. | |
| Kathy Redmond (Male breast cancer) says: | 01 March 2010 21:33:48 |
| Dear Bill, Thank you for you comments - at Cancer World we have tried to highlight the fact that men do get breast cancer but often their needs for information and support are overlooked. You amy be interested to read an article on this that we published last year. See: http://www.cancerworld.org/Articles/Issues_32/Patient_Voice/A_man_with_a_woman%27s_cancer%0D%0AHow_can_we_do_better_for_male_breast_cancer_patients%3F.html Thank you for taking the time to write to Cancer World to highlight the fact that the needs of men with breast cancer are often overlooked. Kathy Redmond Editor | |
| Fatima Cardoso (Male breast cancer) says: | 02 March 2010 01:18:08 |
| Dear Bill Thank you very much for your passionate and very important comment. Please understand that the name “Male BC” has nothing pejorative. Men have been excluded from breast cancer trials based solely on gender and that is not correct and must stop. That is why it is important to call the attention to the gender issue. Perhaps once we finalise the project we will find out that the biology of breast cancer in men is the same as breast cancer in women and that we should just give the same names as we give now to the different subtypes of breast cancer in women. However, at this point we believe that the biology is different and we might find out a more suitable name based on biology. We will do our best. We can continue discussing through email, if you wish to do so. Kind regards. Fatima | |
| Phil Stewart (Male breast cancer) says: | 04 March 2010 02:12:06 |
| As a recently diagnosed male breast cancer patinet,it is encouraging to see these groups are promoting this research. Their plans to include a randomized clinical trial into what works in endocrine therapy for males will be the first, if it happens. This sort of information is greatly needed by males dealing with breast cancer. I have been struggling for months trying to get a handle on this question but have found there is no consensus on what is best. Perhaps this trial will answer that for us. I for one would participate---Phil | |
| Baffour Awuah (Male breast cancer) says: | 04 March 2010 07:34:47 |
| This is a wonderful and provocative subject.Male breast cancers are real issues that has been swept under the carpet in the past. 3 percent of breast cancers we see in our centre are male patients.We all borrow the ideas from trials using only females to treat these patients. The dawn is here with us all. Is it time to have a multi institutional data and really look at the best way to describe the patients demographics because the one percent reported in the past should be reviewed to reflect the changing global dynamics of cancers in general especially in developing countries like ours | |
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