Advanced Breast Cancer
This website is under construction. Look for more Summer, 2006.

Musa Mayer

Online Articles, Book Chapters, Webchats and Interviews

Books

>ADVANCED BREAST CANCER: A Guide to Living with Metastatic Disease, 2nd Edition

Patient-Centered Guides, O'Reilly & Associates, 1998 ISBN 156592522X

"For years there have been so many requests for a resource book on metastatic breast cancer. Advanced Breast Cancer fills that void and does a wonderful service to thousands of women by giving them the resources they have been seeking, the support they need and the hope that research offers possibilities for a longer life.... The information on handling emotional issues, treatment options, side effects from treatment, and managing pain will be used as a resource bible on how to cope with metastatic breast disease for years to come."
Jane Rodney, Director, Breast Cancer Resource Center, Princeton, NJ
"Real stories, well-researched advice and practical references that will be a lifeline for a growing group of patients, too often overlooked. Advanced breast cancer can and should be treated like a chronic disease--when one approach fails, turn to others. This book should be part of every woman's treatment plan."
Amy S. Langer, Executive Director, National Alliance of Breast Cancer Organizations (NABCO)
"Musa Mayer has given us a gift that we have needed for a long, long time: an in-depth, truthful, personal, and informative resource about metastatic breast cancer. Advanced Breast Cancer is a major work that I believe will be as important to women with metastatic breast cancer as Dr. Susan Love's Breast Book is to newly diagnosed breast cancer warriors."
Susan Claymon, Breast Cancer Action Newsletter
"Advanced Breast Cancer is an excellent book...If knowledge is power, this book will be good medicine."
David Spiegel, M.D., Author of Living Beyond Limits: New Hope and Help for Facing Life-Threatening Illness

>AFTER BREAST CANCER: Answers to the Questions You're Afraid to Ask

Patient-Centered Guides, O'Reilly & Associates, 2003 ISBN 0596507836

"Accurate and helpful information for people who are worried."
Clifford Hudis,MD Chief, Breast Cancer Medical Service, Memorial Sloan-Kettering Cancer Center
"This long-overdue book helps women acknowledge what has happened to them, their uncertainty about what might happen in the future, and their great need to 'live life well.' Musa is the quintessential advocate; we are indebted to her for her courage, honesty and guidance."
Alice Yaker, Executive Director, SHARE: Self-Help for Women with Breast or Ovarian Cancer
"I would suggest that all survivors read it, especially when they reach that point where they are worried about not having a way to fight the cancer after treatment is over. After reading the book, I feel like Musa Mayer wrote about me and everything that I went through and continue to revisit as a survivor."
Joy Simha, Co-Founder, The Young Survival Coalition
"In this long-needed book, Ms. Mayer gives voice and answers to those questions about possible recurrence that haunt women in the months and years after breast cancer treatment. Her honest but hopeful view will enable her readers to move beyond anxiety and statistics towards understanding and optimism. This book should be part of every breast cancer survivor's post-treatment education."
Hester Hill Schnipper, LICSW Chief, Oncology Social Work Beth Israel Deaconess Medical Center

>EXAMINING MYSELF: One Woman's Story of Breast Cancer Treatment and Recovery

Faber & Faber, 1994 ISBN 0571198457

"The very best book anybody has ever written about what it is like to have breast cancer."
Linda Ellerbee
"In my clinical practice I have worked with hundreds of women with breast cancer. In Examining Myself I heard echoes of their thoughts and feelings on every page, expressed in Musa Mayer's concise and elegant words."
Page Tolbert, CSW, Cancer Care, Inc.
"Examining Myself is required reading for the woman who has taken the bold step of confronting her breast cancer head on and permitting it to reach her heart and soul."
Amy Langer, Executive Director, NABCO National Alliance of Breast Cancer Organizations
"A deeply personal account, but written with such skill and power that it grabs you from the first few pages and holds you in its grasp…Many of us have read a number of accounts of women and their experiences with breast cancer; this one is truly different and very much worth reading."
Breast Cancer Action Newsletter
"Besides offering unobtrusive practical information, the story and the language—the entire style of the narrative—has enormous grace and power as well as compelling insight."
Joann Schellenbach, Director, Media Relations, American Cancer Society

>NIGHT STUDIO: A Memoir of Philip Guston

DaCapo, 1997, Knopf, 1988 ISBN 030680767X

"Artists' biographies tend to be reverential shrines or peeks through the keyhole. This compelling memoir of Guston by his daughter is both… She gives and inside tour that reeks of booze and turpentine—the all-night painting binges, the raucous dinners, the rages against the art world…Frank and touching."
-Newsweek
"As much an autobiography as a memoir of her father, Night Studio is a rich study in father-daughter relations and in the changing consciousness of women…A memoir of depth and clarity."
The New York Times Book Review
"An intricate, gentle memoir."
-The New Yorker
"Night Studio is a remarkable book: it humanizes a great artist without in any way diminishing his stature…It's a moving, intelligent, scrupulously honest memoir about a woman's passage through childhood and adolescence into adulthood as the daughter of a powerful, difficult, utterly loveable father. This book will last."
-Russell Banks, author of Continental Drift, Affliction, The Sweet Hereafter
"The most intimate and detailed biography of the artist that anyone has written…The author evokes well the bigger-than-life quality that made Guston unforgettable…Beyond the quality of the writing, it is the 'human content' of her book that makes it valuable. If this book were the last word on Guston's life, he and we would be perfectly well served. Anyone who starts Night Studio, whether they know Guston's art or not, will be unable to put it down."
-The San Francisco Chronicle

Patient Advocacy

  • 2005 Forum on Drug Discovery, Development and Translation, Institute of Medicine, the National Academies.
    Requested by the US Food and Drug Administration, the Drug Forum brings together leaders from private sector sponsors of biomedical and clinical research; federal agencies sponsoring and regulating biomedical and clinical research; foundations; the academic community; consumers; and federal and private health plans. The mission of the Forum is to improve the system of drug discovery, development, and the translation of research findings to healthcare delivery.
  • 2005 Advocate Peer Reviewer, California Breast Cancer Research Program
  • 2001-2005 Patient Consultant with the FDA Cancer Drug Development Program
    Patient Representative with the FDA Oncologic Drugs Advisory Committee (ODAC)
    Patient Consultant responsibilities involve representing patient interests, experiences and needs in working along with FDA staff in the planning and conduct of clinical trials with pharmaceutical companies. Patient Representatives sit as voting members on FDA Advisory Committees.
  • 2004 Committee on Alternative Funding Strategies for the Department of Defense Peer Reviewed Medical Research Programs, Institute of Medicine, the National Academies. IOM report Published September, 2004.
  • 2004-2005 Advisory Board, RegistHER Trial, Genentech.
    RegistHER is a prospective observational cohort study that follows metastatic breast cancer patients with HER2+ breast cancer from the time of their metastatic diagnosis for the rest of their lives, tracking patterns of clinical practice and response to treatments.
  • 2003-2004 Development committee for the LEADGradsOnline.org website a web-based resource for the 1,100 graduates of NBCC's science training course for advocates, Project LEAD, as well as LEADers, a mailing list.
  • 2003-2004 Consumer Peer Reviewer, The Cochrane Collaboration
    Participation as a Peer Consumer Reviewer for the Cochrane Breast Cancer Group in the review of protocols and preparation of new Cochrane Reviews.
  • 2003 Commentator, California Breast Cancer Research Program
    After meeting with Advisory Board and reviewing data from the California Cancer Registry and related literature on disparities in breast cancer care, wrote a detailed 'White Paper,' entitled Treatment and Outcomes For High-risk and Metastatic Breast Cancer in California: An Inquiry into Disparities and Research Needs.
  • 1994-2005 Breast-Cancer Mailing List
    Ten years of ongoing daily participation in an online mailing list for a general discussion of breast cancer related issues with several hundred members from the United States, Canada, the U.K. and other countries around the world. E-mail sharing of evidence-based information and emotional support to newly diagnosed patients, and to women and their families who are dealing with advanced breast cancer, as well as searchable archives.
  • 2000-2005 BCMETS Mailing List
    Daily participation in this mailing list dedicated specifically to the discussion of advanced (metastatic) breast cancer, consisting of about five hundred patients and family members dealing with metastatic disease and related treatment and support issues. Searchable archives and information on metastatic breast cancer.
  • 1999-2004 PAIR (Patient Advocates in Research) mailing list
    This invited mailing list is comprised of patient advocates who have a specific interest in cancer research and related issues.
  • 1992-2005 Advocacy efforts on behalf of cancer organizations
    National Breast Cancer Coalition, Y-ME, NABCO, SHARE, American Cancer Society, Living Beyond Breast Cancer, Young Survival Coalition, Breast Cancer Action and numerous other regional and local support organizations. Consultation and presentations at many breast cancer support groups and organizations on the topic of breast cancer survivorship, advanced breast cancer, support groups, researching breast cancer on the Internet, writing as a way of healing, updates on current breast cancer research, and medical conference reports, etc. (See Speaking Engagements)
  • 2000 Recipient of Advocacy Award, National Breast Cancer Coalition
    This recognition is presented to three women each year for their work as breast cancer advocates.
  • 1997-2002 MAMM Magazine: Women, Cancer and Community Contributing Editor, Essays and Features:
    • Holding Tight, Letting Go, book excerpt, October 1997
    • Lost and found, review of the first World Conference on Breast Cancer, Dec/Jan 1998
    • Delayed diagnosis: Rage against the machine, Oct/Nov 1998
    • Getting the bad news, Feb/March 1999
    • Mind games: Weighing conflicting medical opinions, April 1999
    • You're not alone: Finding the right support group, May 1999 (reprinted in MAMM's Guide for the Newly Diagnosed, 2000)
    • Finally finding release: Confessions of a New Age seeker, June 1999
    • Advocacy without borders, World Conference on Breast Cancer Advocacy, July/August 1999
    • Writing your way to health, April 2000
    • Breast cancer during pregnancy, May 2000
    • Pregnancy after breast cancer, June 2000
    • A survivor's circular journey, September 2000
    • Tales of life and living: Three videotapes dealing with advanced cancer, February, 2001
    • The shock of recurrence, Special issue on Advanced Breast Cancer, May 2001
    • Rethinking 'Cure,' March 2001
    • On the Death of Friends, January 2002

Speaking Engagements

  • After Breast Cancer: Answers to the Questions You're Afraid to Ask 2002-2004 presentations
    • Plenary Address to the World Conference on Breast Cancer, Victoria, BC 2002
    • Keynote at Madison Breast Cancer Recovery Foundation, Madison, WI 2003
    • Keynote at Hamilton Breast Cancer Program Conference, Hamilton, Ontario, 2003
    Presentations at Mid-Hudson Breast Cancer Options; Cumberland Valley Breast Cancer Awareness; Breast Cancer Coalition of Rochester; Ithaca Breast Cancer Alliance; Breast Cancer Action, San Francisco; Austin Breast Cancer Coalition; Rhode Island Breast Cancer Coalition, Providence; Living Beyond Breast Cancer, Young Survivors Group, Philadelphia; Young Survival Coalition Annual Conference, Philadelphia; Willow Breast Cancer Support & Resource Services, Windsor, Ontario.
  • Living with Advanced Breast Cancer 1998-2004 presentations. Wellness Community, Philadelphia; Mautner Conference on Lesbians and Cancer; Austin Breast Cancer Resource Center; Rochester Breast Cancer Coalition; ACS Nurses Training Day, Utica; SHARE; two World Conferences on Breast Cancer; MAMM Magazine WebCasts 2000, 2001; WebMD WebCasts 2000-2004; Many radio interview/call-ins
  • Report back from the San Antonio Breast Cancer Symposium
    SHARE: Self-Help for Women with Breast and Ovarian Cancer, New York, 2000, 2001, 2002, 2003
  • Challenges and Choices: A Survivor Talks about Life After Breast Cancer
    North Carolina Breast Cancer Coalition, Southwest Oklahoma Breast Cancer Alliance, Tulsa, 2001
  • Presenter and Consumer/Advocate Panelist, with Eric Winer (Dana Farber),
    Metastatic Breast Cancer Symposium, Boston, April 2002
    Massachusetts Breast Cancer Research Program Annual Meeting
  • Co-Presenter, Proteomics, A New Approach to Understanding Breast Cancer, NBCC Annual Advocacy Training Conference, May 2003
  • Panelist, Plenary Session, The Role of the FDA in the 21st Century: Safety, Science and Speed, NBCC Annual Advocacy Training Conference, May 2003
  • Panelist, UCSF Symposium on Ethical Considerations in Genetics, San Francisco, April, 2003
  • Chaired, Institute of Medicine Panel on Mammography and Beyond, SHARE: Self-Help for Women with Breast and Ovarian Cancer, NYC, 2002
  • Reach to Recovery: Advanced Breast Cancer, development and taping of training modules, American Cancer Society, Atlanta 2001
  • Presentation, Breast Cancer Drug Development workshop
    NBCC Annual Advocacy Training Conference, 2002
  • Can we individualize the treatment of patients with breast cancer based on genomic profiling? New Approaches to Breast Cancer Metastasis Panelist representing advocacy perspective, Era of Hope, The Department of Defense Breast Cancer Research Program Conference, Orlando, 2002
  • Consumer panelist, Case Presentation on Advanced Breast Cancer
    San Antonio Breast Cancer Symposium, San Antonio, December, 2002
  • "Phase III Clinical Trials: Are we answering the important questions?"
    "Phase II Clinical Trials: When do we know enough about safety and efficacy?"
    "Navigating to Knowledge: Keeping Current with Breast Cancer Research"
    Faculty presentations for Clinical Trials Project LEAD training, December 2003
  • Industry Roundtable Respondent, Early Access to Investigational Treatments, National Coalition for Cancer Survivorship, March 2004
  • Presentation and Discussion, Living with Metastatic Breast Cancer, with David Mintzer, MD at the Wellness Community, Philadelphia, March 2004
  • Keynote Speaker, Advanced Breast Cancer: Tools for the Journey, Rochester Breast Cancer Coalition, March 2004
  • Panelist, Plenary Session, Latest Controversies and Complexities and the Role of the Breast Cancer Advocate, NBCC Annual Advocacy Training Conference, May 2004
  • Workshop Presenter, Clinical Trials: Are We Asking the Right Questions? NBCC Annual Advocacy Training Conference, May 2004
  • Keynote speaker, "Searching in the Dark," Emerging Topics in Breast Cancer and the Environment Research, Conference organized by the National Institute for Environmental Health Sciences (NIEHS), Princeton, NJ, November, 2004.
  • Speaker, Clinical Trials 101, presentation to SHARE and JALBCA (Judges and Lawyers Breast Cancer Alert), March, 2005

Profiles

Patient Advocate: Musa Mayer, Association of Community Cancer Centers

Meet Activist Musa Mayer, at Onconurse.com

© 2005 Musa Mayer. All rights reserved.