Report on Young Womens working group

EUROPA DONNA Working Group for Young Women with Breast Cancer

18 June 2005, Milan

Breast Cancer in Young Women Workshop at the EUROPA DONNA

7th Pan-European Conference
5 November 2005, Rome

EUROPA DONNA – The European Breast Cancer Coalition has held two special gatherings to air the concerns of women who were diagnosed with breast cancer under the age of 40. The EUROPA DONNA Working Group for Young Women with Breast Cancer, held on 18 June 2005 in Milan, and a Breast Cancer in Young Women workshop at its 7th Pan-European Conference in Rome on 5 November 2005 brought young women together to discuss their experiences and exchange ideas to advocate for young women’s issues in their countries.

Working Group for Young Women with Breast Cancer, Milan, 18 June 2005

The Working Group brought together six women from France, Greece, Israel, Slovakia, Switzerland and Turkey who had been diagnosed with breast cancer before the age of 40. As it was the first meeting of its kind, and support groups for young women tend to be lacking in most countries, the women took advantage of the opportunity to share their experiences, frustrations and concerns, common ones being dating, fertility and pregnancy. The six young women were joined by EUROPA DONNA President, Stella Kyriakides, board members and head office staff. Representatives of the Young Survival Coalition in the USA also provided background information and some pertinent advocacy tips for young women.
To open the meeting, Stella Kyriakides welcomed the participants and set the relaxed and friendly tone of the gathering. She explained how the many younger faces at the ED Advocacy Training course held in November 2004 led her to consider that women diagnosed with breast cancer under the age of 40 may require a different approach. While the experience of younger women is also relevant to that of older women, she said that ED would like to examine the subtle differences in the young woman’s experience and determine whether ED should address them separately.

The situation for young women: a country comparison

The six participants and all present then shared their personal stories and summed up the situation for young women with breast cancer in their countries.
Israel was the only country that appeared to have a support base for young women, while Greece, France, Slovakia, Switzerland and Turkey had few services for this age group.
ED board members and staff then presented statistics and information on support systems for young women in Canada, France, Ireland, The Netherlands, Sweden, Ukraine, the UK, and in Europe in general.
In the European Union (EU-25) there are approximately 269,500 new cases of breast cancer per year, and in the World Health Organisation (WHO) European region there are more than 360,000 new cases. While Europe-wide statistics for young women are hard to come by, international statistics from the International Breast Cancer Study Group reveal that one in 40 women with breast cancer is younger than 35. However, data from the Netherlands Cancer Institute indicate that 10% of women with breast cancer are under age 40. Moreover a study by Botha et al. published in the European Journal of Cancer examining breast cancer trends in 16 European countries reported an average incidence of approximately one in 1500 35-39-year olds. It also found a trend toward increase in incidence for all ages and a decrease in mortality.
Similar trends have been reported in Sweden, where a special working group for young women was established by a breast cancer nurse who recognised the needs of young women and steered them to the Breast Cancer Coalition. ED Sweden is currently lobbying to extend the age for screening to include women age 40 and above.
Information presented to the group about Ukraine indicated that there is an effective cancer registry in the country. There are approximately 16,000 cases of breast cancer reported per year, 8.5% of which are in women under age 40. There is a high mortality rate for all patients, at 22%. Activities for young women were initiated by women involved in ED Ukraine and a group for young survivors was begun in the last year. Media attention through a talk show involving young women helped to promote activities for young women, and a documentary on physical activity following surgery has been produced.
In France, 5.5% of women diagnosed with breast cancer are under the age of 40. Information and support lags behind for all women in France and no groups for young women seem to exist. While some social services for young women are available, such as childminding while women undergo treatment, information about them is difficult to find.
In Canada, 23% of all women diagnosed with breast cancer are under age 50. A research survey conducted by the Canadian Breast Cancer Network and the Ontario Breast Cancer Community Research Initiative found the overall theme to be “nothing fit me” when young women were asked about information available, support and programmes.
Findings for the UK showed that of the 41,000 women diagnosed with breast cancer each year, about 8,000 are premenopausal, 2,000 of whom are in their 20s and 30s. Although no young women’s group was found, several programmes run through breast cancer units and non-profit organisations were identified. One organisation had recently launched a set of standards of care for young women with breast cancer.
In Ireland, where approximately 245 cases of breast cancer were reported in women under age 45 in 2001, the first conferences dedicated to young women with breast cancer were held in January and June 2005 with the next one due to be held in June 2006. They were hosted by Action Breast Cancer and Reach to Recovery Ireland, and supported by ED Ireland and Fashion Targets Breast Cancer. Support groups for younger women are also available through the Reach to Recovery programme.
In the Netherlands, under the umbrella of the Netherlands Breast Cancer Association, there is a focus group for survivors aged up to 45 called Point of Contact for Young Women. The group provides a help line, an e-buddy service and meetings, and produces a monthly newsletter. Another network for young people with all types of cancer advocates for issues affecting young people, such as insurance and access to jobs.

The US experience

As self-described “trailblazers” in advocating for young survivors and providing support, the Young Survival Coalition (YSC) was established in the United States in 1998 and now has over 15,000 members worldwide. One of the coalition’s founders shared her valuable experience at the meeting and lent her support to the young European survivors. In 1998 three young survivors came together to form the Young Survival Coalition with a mission to change the face of breast cancer.
While women 40 and under account for just 5% of all breast cancer cases in the USA, in numbers this converts to 11,500 women diagnosed annually, 1400 of whom will lose their lives. There are now nearly 250,000 young survivors in the United States. The YSC founders began by attending breast cancer meetings wearing T-shirts with their age of diagnosis on the back to help draw attention to the fact that the disease also affects young women. Since then the group has grown exponentially. They set out to educate the breast cancer community about the special requirements of this population. Now nearly all breast cancer organisations in the US are linked with the YSC or provide information about them.
YSC aims to address the unique needs of young survivors, such as dating issues, dealing with newly established relationships, body and sexuality issues, babies and very young children, fertility concerns, career issues, financial concerns, talking with parents and fitting in with healthy peers and colleagues, and finally, providing contact with women with similar concerns and experiences. The Coalition works to enact change for young women by filling the information gap and helping them through their experience by providing tailored, relevant and age-appropriate educational resources. It also seeks to educate the medical community to prevent delayed diagnoses, raise awareness of the unique challenges facing younger women and advocate for standards of care, and has established a medical advisory board. It also aims to increase awareness of breast health among the general public. Through the use of the Internet and local community groups it helps to reduce the sense of isolation.
The YSC also advocates to increase the number of clinical studies involving young women. It is now involved in a number of key research collaborations, such as one with Dana-Farber/Harvard Medical School on how fertility concerns impact on young women’s treatment decisions, and another, ACRIN6666 – Screening Breast Ultrasound in High Risk Women, evaluating the role of ultrasound as a supplemental screening tool for women at high risk of developing breast cancer. A list and summary of key research topics concerning young women and breast cancer can be found on the YSC website (www.youngsurvival.org).
In addition to its extensive website – with news, a bulletin board and an interactive forum – the group also produces a quarterly newsletter, teleconferences involving women around the world, films and documentaries. The material provided on the website can be used by the young European survivors to put their ideas in motion.

Young survivors in Europe: how to proceed

The young survivors then began to brainstorm about the five things they felt were most lacking during their treatment. Many of the women were able to vent their frustrations and share the obstacles they have faced and are facing. Many felt that they were rushed into treatment decisions without having the necessary background information to make these decisions. Ensuring that doctors are better informed, using ultrasound in high risk young women, concerns about body image and reconstruction, dealing with work and childcare were all topics of importance.
Stella Kyriakides then helped facilitate a session in which the young participants summarised their concerns and priorities. Concerns and issues, many of which overlap, included the following (not in order of priority):

  • Obtaining better information about diagnosis, treatment and the breast cancer experience in general
  • Raising awareness of breast cancer in young women amongst gynaecologists and other doctors, through training
  • Being informed about side effects of treatment, such as hormonal therapy and symptoms of early menopause
  • Having access to information about clinical trials, their results and how to participate in them
  • Having access to genetic counselling and screening for women with family history of breast cancer
  • Having access to information about support groups for young women
  • Hearing realistic stories about survival and experiences
  • Helping young survivors talk to their family and friends about cancer
  • Dealing with body change and how this affects sexuality and relationships
  • Understanding the fertility issues, the possibilities of becoming a mother in the future
  • Knowing the prospects for adoption and being eligible as a breast cancer survivor
  • Providing support for children and helping them cope with their mother’s disease
  • Helping with childcare and organising life at home
  • Maintaining a career while stopping work for treatment and the accompanying financial concerns
  • Keeping the right to health insurance
  • Improving social awareness in the community about what breast cancer means to life in general

The young women then briefly discussed ways to combine their efforts to improve the situation for other young women in their countries. Some of the ideas included: having access to accurate information for young women in local languages; creating a concrete action plan; and applying the main points identified to ED statements which in turn could be adapted to each country. ED head office could collect information to send to ED Fora for translation and localisation, such as a list of questions young women should ask their doctors, frequently asked questions (FAQs) with answers (US version approved by advisory board available on www.youngsurvival.org), and a statement of European young patients’ rights. A special section on young women could be added to the ED Passport to Breast Health. Information, such as a list of resources, could also be made available on the ED website for downloading.
It was concluded that the young women would continue their discussion at the Pan-European conference in Rome, and that the EUROPA DONNA Board would discuss future actions on this topic in early 2006.

Breast Cancer in Young Women Workshop, Rome, 5 November 2005

The six participants from the Working Group meeting in Milan formed the main panel at the workshop on Breast Cancer in Young Women at the ED Pan-European Conference in Rome. More than 25 other women of various ages and nationalities joined the workshop, which was moderated by ED Board Member Ingrid Kössler.
The panel members and participants brought up issues of concern to young women, and some to all women, such as telling children about the illness and taking care of them during treatment, telling partners, sexuality, work and financial worries. Cultural influences can be a further burden in some countries where women cannot talk openly about many of these topics.
Some of the participants had first-hand experience with support groups for young women in Ireland, Israel and Sweden, some of which grew from the Reach to Recovery programme. Conferences for young women have been held in Israel. Few programmes or services designed especially for young women are available in other countries.
Groups for partners of women with breast cancer have been created with success in Sweden and with less success in Ireland. In Sweden the programme also educates men to become support givers themselves.
Employment, career and insurance issues are important concerns for young women, and can affect many other women with breast cancer as well. The possibility of advocating for specific labour laws protecting patients was raised. Many women said they felt forced to work while they were undergoing chemotherapy for fear of losing their job. Career moves and job changes can also be difficult if a woman has to disclose her health history. In some countries, complementary health insurance policies are denied to women with breast cancer. Ensuring that health insurance policies include stipulations allowing sick leave for women with breast cancer could be a target for lobbying. Some of the young women also reported difficulty getting a bank loan or mortgage due to their illness. It was agreed that discrimination is in important issue that needs to be addressed.
It was concluded that meetings bringing together young women with breast cancer, or women with experience with this group, from different countries and backgrounds, highlights the importance of establishing support and advocacy groups for young women.

If you would like more info about Europa Donna’s initiatives with young women please contact
Karen Benn in the Head Office in Milan. +39 02 8907 9660.