>> good morning. welcome to mosaic. i am honored to be your host this morning. we are about to begin a really interesting conversation about breast cancer but in a different way than we are usually used to in our community and culture. i would like to introduce you to woody winegarden who has written an interesting book called roller coaster, how a man can survive his partner's breast cancer and introduce you to the executive director of an organization called zero breast cancer based out of marin

county. welcome. >> thank you. >> what is your organization? >> we are community based and have been dedicated to finding the causes of breast cancer particularly those in the physical and socioeconomic environment and to find ways that we can educate the community about risk reduction so they can help lower their risk or avoid breast cancer all together. >> your clientele so to speak is both women, men, families, medical community, legal community. >> correct. >> a broadly based consumer target base. >> exactly. it is for communities and societies. there isn't one unfortunately untouched by breast cancer. what we are sharing comes out of the research that scientists are doing and we are translating it into the community so they can do something practical with the information. >> lovely. woody, you have a different perspective. your wife nancy had breast cancer. why don't you jump in and tell

us how you came to write your book. >> i started by doing a journal when she was in the throws of the treatment. then i realized shortly there after what i had experienced and what i had to say could help other men in similar positions. >> so people journal for different reasons and that's a very personal kind of experience. for you, were you someone who kept a journal normally? was it something you started to do because of wife's breast cancer? how did you come to actually write about your experience? >> i am a life long professional journalist but private journals were done erratically throughout my life, sporadically. this one was done out of necessity. it is therapy for me. it got very personal and very honest.

that's what the book ended up being. >> when did you actually begin to journal? >> just when she was diagnosed, the day she was diagnosed. >> now the book is published. >> yes. >> when in your experience does the book itself end? >> it doesn't end because cancer is chronic and it's always there. what the book does is have hope. there have been 15 books in 15 years written by men about their partners' breast cancer. 14 of them are out of date, i believe. mine is current. the fact is that men are the forgotten part of the equation. the wife is threatened. her life is threatened, so the focus is on her. men's universe is threatened and turned upside down. most people ignore the men despite the fact that that the man has to be there for his

wife all the time, 24/7 in effect, and be passionate and compassionate at the same time. >> breast cancer is one of the illnesses in culture that's really rapidly changing in terms of the insights of the experience itself, the medical aspect of it in terms of research and treatment and i am sort of wondering then from each of your perspectives what is current? what is current from the perspective of zero breast cancer and then we can ask from his perspective. he said there are satisfy books and -- 15 books and 14 are not current. >> yesterday we launched a group of people involved with breast cancer survivors. we learned that 23% of all cancer survivors in the country are breast cancer survivors which is good news, bad news. it means there has been progress in helping people not to have literally a death

sentence when they hear they have breast cancer. it leaves people who live with greater levels of risk and greater levels of fear about breast cancer recurrence. one of the things zero breast cancer is starting to do is look at prevention of a second or recurrence of breast cancer, not just prevention of the sort of primary disease. that really is probably the most up to date development i can share with you. >> woody, from your perspective, what makes your book or your experience current? >> i have done extensive research with medications and drugs and with research itself. it constantly changes. for example, when my wife was treated, she lost her hair almost instantly during the chemo. that has been alleviated to some degree now by a cocktail,

chemo cocktail being changed. the one componentent that caused that is no longer there or it is lesser dosage. also, there are all sorts of new drugs that didn't exist 20 years ago that will extend life, not necessarily cure things, but are better. the technology has been proved and the doctors are more aware. they're also more aware that they need to incorporate nonwestern medicine techniques sometimes. >> we are off to a wonderful start. we will take a quick break. please join us in just a moment as we return to this important conversation on mosaic about breast cancer.

>> welcome back to mosaic. we are in the middle of a wonderful very informative conversation with woody weingarten and rose bar low about breast cancer. rose, i know you deal with all classes of people, people from all stations of life as it impacts breast cancer. we certainly know with all illnesses, that it touches every class, race, every station in life. i am wondering if you can talk a little bit about that perspective of the experience. >> we're increasingly bringing focus on the under served communities in this conversation. when we started it was marin breast cancer watch and founders were people affected by breast cancer but also people who for the most part

had significant resources they could call on, not just material but also educational resources, so they could sort of understand and engage in a similar way to the approach that woody has taken, research of their own, asking questions of their doctors, having english as their first language. now we are really starting to pivot our efforts and apply our learning to communicating with those communities that are not as well resourced. for socioeconomic reasons, english is a second language, lower skills. there is a lot of work to be done there. i am happy to talk more about that. >> your book is your particular reflection of your experience as a husband with your wife with breast cancer. we know there are plenty women who are otherwise single, might have a best friend or companion they moved through the illness

with, certainly lgbt folks, etc., i am wondering to what degree though your experience is singularly your own but you have written a book and all books have a universal appeal. to what degree do you view your experience in your book as responding to serve the support system of anybody's experience with breast cancer? >> i would like to say first that my book is a hybrid. the journal parts i refer to are three sections of the book about chemo, the radiation, and the surgery. the rest of the book is expository material. there is a chapter on a support group i have been running for 20 years called marin man to man. it's a group for men whose partners have or had breast cancer. we have expanded it. we have a man there now who had breast cancer himself. there are 2500 men with breast cancer each year. >> can you talk a little bit

then about -- one thing with illness or breast cancer is people don't articulate i think enough about the personal impact of body image, about relationship, issues of sensual, sexuality, issues that people need to adjust to relationally, issues that impact one's ability to work and sort of the emotional roller coaster. can you talk a little bit about some of those things in the context of your experience? >> i could but to answer everything you brought up, you have to read the whole book. >> of course, sure. >> meanwhile, the image that women have can be destroyed during breast cancer because they may need a mastectomy and that will change their physical appearance. some men will react badly to that. some women will react badly to

that. the hair loss that still exists is a big deal. it may mean getting a wig. it may mean watching your hair grow as my wife did in different colors. support is important, critical, coming from wherever it comes from. i recommend that women and men find a group if possible of support. if you believe in therapy in terms of therapists, find that. use friends. women in particular need women friends who can relate to them on a physical basis to give them that support. men need to get out of the way sometimes. my wife, one of the things i learned was sometimes she just wanted me to hold her hand and squeeze it and shut up. that became very important. it became very important that i not play the macho man role. i would have trouble with that

anyway. but that is not what women are looking for. they're not looking for the fixer in these circumstances. they're looking for people who can understand to some degree what they're going through and who will be there doing pretty much what they want them to do. >> thank you. we are going to take a break and come back in a moment as we continue this important conversation with woody and rose. please join us in just a moment on mosaic.

>> welcome back to mosaic. we are in the middle of a good conversation with rose barlow the executive director of zero breast cancer and woody weingarten who has written a wonderful book called roller coaster. welcome back. the world is so layered when it

comes to issues around prevention and genetic profiling and really coming to understand generally speaking but also individually what your own personal profile looks like when it comes to breast cancer. can you talk a little bit about that world, about issues of prevention, about issues of knowledge and what is important to note about yourself? >> right. about 10% of all cancers are genetic. i will talk from a personal standpoint briefly about that and then i will talk about the others where there isn't necessarily the clear cut understanding of what might be risk factors. i lost my mother and her sister to ovarian cancer when they were younger than i am. i was very fortunate to have doctors in africa, london, scotland and now here in the bay area who took the history seriously even though we knew

about the gene who put in touch with counselors to create a course of a action to help me stay away from those familial risks. we determined we did have the breast cancer gene that's very prominent in the community. armed with that knowledge over 25 years, i have been able to do things that have helped to get me to this point disease free at this time and i hope to continue to be disease free and the sort of general counsel i can give to people particularly with the ethnic background is know as much as you can about family history. not only your mother's side but actually your father's side as well. >> i am not sure to what degree the medical community is caught up with this, it used to be that with medical history women were asked exclusively about

maternal generational side of the family but i think it's come to be understood that a woman needs to really understand the paternal side as well because that does have significant influence in terms of the gene and potential development of breast cancer. >> in my case it was my maternal paternal side. it was my mother's father's side where we were able to identify the history of the gene because it's shown in what were nieces of my late grandfather as well. that's how we have been able to verify this. it hasn't shown up on my maternal grandmother's side at all. that's how we have been able to tell. there is a force called facing our risk empowered which is the go to resource for information about the genetic risk and how

to deal with it. turning to the risks of people, women and men who are potentially at risk from breast cancer, it isn't necessarily clear cut. it appears randomly in families. nobody quite knows why. we have been partners with researchers who have been doing longitudinal studies with girls starting with eight year old girls, some of whom are ready to graduate high school. >> i think we will put up a book you brought so we can show folks what it is going to be. what is the new puberty? >> the new puberty is a piece of work that doesn't come directly out of the study but some researchers and doctors associated with that team have done more detailed research

both into the physical development of young women in today's society as well as some of the influences on them. what they have documented is that in many communities puberty is happening at an earlier and earlier age. puberty has been shown to be associated -- early puberty has been shown to be associated with increased lifetime breast cancer risk. the belief is that what's driving this early puberty is it's linked to some of the other observations we hear in the news about epidemic of obesity, lack of physical exercise, poor diet, stress in the lives of young women. those are factors that can contribute to early puberty and early puberty becomes a risk factor over a lifetime for breast cancer. >> a lot of influence on issues like public policy and other issues in society. we will take a break and come back to mosaic in just a

moment.

>> welcome back to mosaic. we are at the tail end of a conversation about breast cancer with rose barlow and woody weingarten who has written a wonder if you will book called rollercoaster about a man that can survive his partner's breast cancer. there is so much on the future of breast cancer and always on the edge of hope. what does the the future look like from your perspective around issues of breast cancer? >> ladies first. >> from a community engagement

to education and outreach point of view, for us the future is those young women current will i in high school. we are very excited to start thinking deeply about how to engage that group, not to drive them crazy with fear, but to encourage them to be educated, to educate their peers, to do things they can to prevent breast cancer and also to consider going into the field. we need a new generation of advocates, communicators, healers, careers, of scientists. that's something in our future that we are very excited about. >> i think there is a proliferation of organizations now about breast cancer. 20 years ago the word breast was a word that people didn't use in public. we have gone way beyond that. an organizations now are all over the country and all over the world in fact that are

helpful, giving money to research, doing enormous amounts of research. it is very positive. my book is what i call the light at the end of the tunnel that shows that people can survive, both the woman, the husband or partner, the relationship itself. nine out of ten relationships end up closer at the end of the treatments because of what they have gone through. it is a -- it can be a positive experience despite the negativity, despite the difficulties. >> you know, from your perspective there is just so many layers of this that are in some cases political and some cases scientific and some cases the practice of medicine, personal educational aspect of it, there is public policy. even now what would you say

would be an under served population or an under served thread to the issue of breast cancer at large? >> i do think economics play a big role. i think most economically disadvantaged in communities are the under served. we need to draw attention to that. part of that links back in a way accessibility to curative medical care in the country and the way costs are allocated to people is a huge challenge. >> so it's a public policy issue as well as a pure scientific access issue. >> i make reference in the book to the lesbian community, to the african-american community, to the hispanic community, all of which do not go to doctors with the same frequency that

the more wealthy white community does. therefore, their survival rate is lower. >> wow, rose and woody, thank you so much for helping us with this really important conversation. certainly there are lots and lots of layers of this conversation we did not get to but have touched on. we hope this will be a comma in the conversation for you to engage the issue on whatever level that you do. thank you so much for being with us here on mosaic.

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