Willow: info

'Living' Newsletter - Issue 16, Spring 2006

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Willow Unveils the First Stage of its Brand Revitalization Process
Willow Breast Cancer Support Canada

Willow has changed its name! Now officially known as Willow Breast Cancer Support Canada, this revitalized name will assist in alerting Canadians about this unique, national, free support service.

With more and more people now living with breast cancer, there is a greater need for breast cancer support, resources and information services, especially in remote communities across Canada. Willow understands everyone doesn't have access to the latest information surrounding breast cancer. At Willow, we have the resources and experience to help you learn about your options and how to cope with the challenges you may face.

Willow's revitalized name reaffirms our commitment to all Canadians impacted by breast cancer and our mission to support the thousands affected.

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"Young Women Affected by Breast Cancer. 6th Annual Conference"
by Bonnie Bassett-Spiers

I was honoured and thrilled to have the opportunity this winter to attend the 6th Annual Young Women Affected by Breast Cancer conference in Denver, Colorado on behalf of Willow. The conference was attended by 650 delegates, the majority of which were young women living with breast cancer. The conference is sponsored by "Living Beyond Breast Cancer" and the "Young Survival Coalition" and has traditionally been held in Philadelphia. The delegates were mostly from the United States but there were some of us 'international' delegates from all over the world, including Canada, Australia, Zambia, Nigeria, Iceland and Ireland, to name a few.

'Young women affected by breast cancer', at least at this conference, was considered to include anyone diagnosed with breast cancer at age 40 or younger. I was able to attend as a woman initially diagnosed at age 36 even though, compared to most of the women at the conference, I felt like an old lady. However, I wasn't the only one. Just from my observations, I would say that the mean age of the delegates was approximately 35.

When we arrived at registration we were directed to a large table with a multitude of different coloured lays with a legend to follow as to the meaning of each colour. Green represented anyone diagnosed within the last year and white represented diagnosis two years ago. Purple was a diagnosis 5 years ago, pink was a diagnosis 10 years ago, orange meant living with metastatic disease, yellow represented a caregiver and blue represented someone who is a support care provider. I ended up having to wear three different colours-orange, pink and blue.

This exercise was a wonderful ice breaker and a terrific way to meet people. I tended to track the orange lay women for the most part. And there were many of us — much more than I have ever seen in any one place. It was somewhat overwhelming and I was left with two reactions. One was of comfort knowing that there are so many of us, and by appearances and speaking to these other women, many doing quite well also. Yet, I was also taken aback by the numbers and of course, by the ages of the women with mets. Many were women in their thirties, struggling with issues that they shouldn't have to deal with at a time when their lives are just really beginning. The other observance that had a large impact on me were the number of women wearing both orange and green lays, indicating that they were diagnosed within the last year with Stage IV breast cancer right off the bat. I wouldn't want to start to even speculate as to why a noticeable number of women at the conference fell into this category but it was an unnerving sight.

The conference agenda covered a wide range of topics and issues relevant to young women affected by breast cancer. Included in this were sessions and information focusing specifically on young women with metastatic disease. One such topic which was discussed quite often was that of new treatments and in particular, the drug bevacizumab or Avastin.

Bevacizumab (Avastin) is a monoclonal antibody which can block the ability of cancer cells to grow and spread. It inhibits the formation of new blood vessels, including those which supply the cancer cell. This obviously greatly reduces or shuts down the cancer's blood supply. However, as with most drugs, there are risks including bleeding, risks to the kidneys and possible increase in toxicity to the heart. Only officially available within a clinical trial however, one trial has already shown that Avastin prolongs survival when given in combination with paclitaxel (Taxol). This large, randomised trial showed that the use of bevacizumab (Avastin) in combination with paclitaxel (Taxol) significantly prolongs progression-free survival in patients with metastatic breast cancer who have not yet been treated.

At the conference there seemed to be a lot of hype and excitement about this new treatment for metastatic breast cancer. I got the impression that some oncologists in the U.S. were giving it to their patients off trial. In Canada, Health Canada has approved Avastin as a first-line treatment for advanced colorectal cancer and there is one multicentre trial going on now for Avastin for metastatic breast cancer with two sites in Canada. The Phase III randomized study is "Paclitaxel With or Without Bevacizumab in Treating Patients with Locally Recurrent or Metastatic Breast Cancer (NCT00028990). This study is no longer recruiting patients and the only 2 Canadian sites British Columbia Cancer Agency, Vancouver and Allan Blair Cancer Centre, Regina. On the other hand, there are eleven current clinical trials investigating Avastin for metastatic breast cancer, all recruiting new patients, in the U.S. (ClinicalTrials.gov)

So, whether Avastin's approval for use for patients with advanced colorectal cancer can translate to approved use for metastatic breast cancer patients off trial seems to be unclear. Further investigation is needed into which health care institutions are using Avastin for breast cancer and when is it being used (i.e. is it only being used as first-line metastatic treatment)?

What I did take away from the discussion at the conference about treatment for metastatic breast cancer was a sense of hope and excitement. Much is happening on the research front and that newer and potentially better treatments are just around the corner. That is not only good news for metastatic patients, within whom new therapies are tried first, but also good news for early breast cancer patients, who will eventually benefit from many treatments being researched now in the metastatic setting.

*This article may not be reproduced in any way except by written permission by the author.

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"MBC Thought...."

"Having metastatic breast cancer is like having a radio continuously on in your head. The goal then is to try to always keep it on low."
(Quote courtesy of Roz Kleban, MSW, Supervisor for Psychosocial Programs,
Sloan-Kettering Cancer Center, New York, at the Young Women Affected by Breast Cancer Conference)

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Development of Metastatic Cancer Network in the States
The Metastatic Breast Cancer Network (MBCN) is a national (U.S.) independent advocacy group of and for women with metastatic breast cancer. It is MBCN's intention to give people with metastatic breast cancer a greater voice in the breast cancer community.

MBCN's mission is to change the way metastatic breast cancer is viewed by the breast cancer community and the public at large. MBCN intends to become a proactive voice in the breast cancer community dedicated to easing fear of metastatic disease, ending isolation, exposing misconceptions and developing strategies for living with the disease and coping with treatment. MBCN will fight for the development of treatments that extend lives as we search for a cure.

MBCN was just started in 2005 by a group of women living with metastatic breast cancer in the New York area, with support and guidance from Roz Kleban MSW, Administrative Supervisor of Social Services at Memorial Sloan-Kettering Cancer Center.

MBCN is currently developing speakers bureaus, conferences, workshops and newsletters. MBCN plans to support and help promote programs and resources offered by other organizations to benefit people with metastatic breast cancer, such as "Living" .

For more information about this new non-profit resource, you can email the Metastatic Breast Cancer Network at mbcnet@gmail.com.

"Living" will continue to connect with the Metastatic Breast Cancer Network and will keeps its readers informed about upcoming Network activities and events.

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"Living" Needs Your Words!
Please share your personal story with us for a Summer 2006 issue. Your words can help reduce the isolation that many people living with metastatic breast cancer can experience as well as providing comfort and inspiration.

Please send your submissions

by mail to: "Living",
c/o Bonnie Bassett-Spiers,
Willow Breast Cancer Support Canada,
20 Victoria St., 5th Floor, Toronto, ON M5C 2N8

or by email to: bbassettspiers@willow.org.

HOPE TO HEAR FROM YOU SOON!