Dr Susan Love - Love and Other Diseases
Yes, it's flippant, but I couldn't resist the title. After all, Dr Susan Love herself doesn't hesitate to joke about her surname. In fact, as a med student she had planned to go into cardiology not breast cancer. She had her marketing slogan all lined up - "Come to Dr Love and let her mend your broken heart." As it was she ended up being "pushed" into breast cancer when "they wouldn't give [her] any male patients". She found herself working with a lot of women with breast disease and discovered that they weren't being treated as well as they should be.
No matter how stunning our line up of other speakers for the conference, Susan Love was always going to be a major drawcard. How could she not be; she's passionate, funny, charismatic, and has an ability to speak about highly medical things in such a way that even the least medically-minded can understand, using amusing, everyday analogies.
Having said that, not everything she had to say pleased everyone. The thing with medicine, as with other science, is that few things are absolute. Yes, we know the Earth travels around the Sun, and that it is a sphere not flat. But a lot of science is about "he said, she said". For every medical paper proclaiming one thing, there is another saying the opposite, and breast cancer is no different. Susan Love made comments in her talks, and to the media before and during the conference, that riled a few people.
For example, she was clear in her belief that mammography has considerable limitations in younger women; that we need a better detection technique for that age group, because mammography has so much potential to miss cancer in those women. Although there were some who felt that negated their efforts to increase participation in screening among women under 50 years, recent medical literature supports her views. Even Dr Madeleine Wall of BreastScreen Aotearoa, admitted that mammography, particularly in younger women is far from perfect, but pointed out that, at the moment it is the best we have.
Susan also dared to suggest that nine weeks of Herceptin might be better than, or at least as good as, 12 months. That didn't get a great reception from some quarters either, but her point is that we just don't know. More is not always better she explained, using earlier "experiments" with very high dose chemotherapy as an example. But you need to try things to find out what works.
Which is exactly what Susan Love is on about, and is part of the reason she founded her own breast cancer research foundation - to find better ways of doing things. And she is not just sitting back and offering criticism. She is out there, actively trying to find those better ways of doing things, actively trying to fulfil her "promise" to "eradicate breast cancer in her lifetime".
You cannot question her commitment, her passion and her energy. At almost 60, she has a punishing speaking schedule as well as running a research foundation and, of course, regularly updating her book, Dr Susan Love's Breast Book.
What We Don't Know
One of the things in Susan Love's first conference session that really struck a chord was her comment that "we haven't studied the anatomy of the breast", that we really don't know that much about the organ we're dealing with.
It seems that a precursor for understanding the disease process, and therefore how to treat it or prevent it, is to have a complete understanding of the organ itself.
"We are really good at curing breast cancer in rats and mice, but not so good at doing it in women," she told us. Perhaps that's because we don't know as much as we should.
Later in our interview she said "Breast development has not had a lot of study... The breast is the only organ that we are not born with, but the stem cells must be there right from the start."
"There is no question that breast cancer is development gone awry," she says, harking back to her earlier comments in the plenary session, that breast cancer is not a foreign invader as we have been inclined to look at it, but part of you that has gone 'haywire'.
Clearly there is so much we don't know...
So, if we understood more about the development of the breast, perhaps we would have a better handle on what happens when it goes wrong. However, there are ethical issues in studying adolescent girls as they go through puberty and develop breasts. I suggested that studying transgender men, who take oestrogen in measured doses in order to grow breasts (among the other female sex characteristics that they wish to develop), might shed some light on breast development.
Susan was generous enough not to dismiss this idea out of hand and agrees that this might provide an opportunity to learn more.
Think Before You Pink
This is a comment Susan Love made in her first presentation when she touched on the breast cancer industry and research. In the last few years there have been a few "lobbyists" who have actively criticised the pink fundraising industry that has grown up around the community's concern about the women we are losing to the disease.
"It's a big problem," she tells me.
"We need to go beyond people being made aware of breast cancer. We are aware - now we need to get rid of it!"
"We have to demand better answers. Where is the money going, what percentage of the money raised is actually going to research and what is that research? There needs to be greater accountability, greater transparency."
She believes those that donate money need to ask the fundraisers what they are doing with it. In the US there is a programme - Project Lead run by the National Breast Cancer Coalition - which trains advocates to sit on the committees that are allocating grant money. It is a science training course designed to help breast cancer activists influence research and public policy processes. A seat at the table.
Advice for Women
In her second session, Dr Love set out to provide practical advice to women. She emphasised that cancer cells live in an environment - your body - that they can be rehabilitated, managed or put to sleep, and that environment is important.
She told the audience that she wanted "send you off with some advice" that could change the outcome for them. As it as for both of her presentations and the interview with her, there was too much to print in full here, but her advice includes the following:
Exercise is important. Yes, we've heard it before but it bears repeating, and, she says, if nothing else it makes you feel morally superior. "You can't get moral superiority out of a pill," she points out. It is also important to maintain a healthy weight.
Stress reduction - important for making you feel better, for improving quality of life if not quantity.
Although diet so far has not been the saviour we thought it would be, it is still important to eat lots of fruit and vegetables. "And chocolate is a vegetable... it comes from a bean!" she grinned, giving us permission to indulge ourselves every once in a while.
"DON'T SMOKE!" she almost shouted. "It is not okay, it is one of the stupidest things you can do. It is also associated with cardiovascular disease, lung cancer, diabetes and..." she paused for emphasis. "It gives you WRINKLES!"
And Susan Love is a "strong believer" in complementary and alternative medicine, qualifying that with the acknowledgement CAM options need to be tested in clinical trials as we test "conventional" treatment.
Much of her advice is not new, but it seemed that hearing it from her gave it more currency. However, it was her last piece of advice that I think I might print out in large letters and hang on my wall:
"The goal is to live as long as you can, with the best quality of life, then drop dead, whether you have breast cancer or not."
Thank you, Susan Love, for being there at our first national conference. Thank you for your expertise, intelligence and wit, your humour, your untiring work on behalf of the world's women, your warmth, your time, and most of all your compassion.
Copyright © 2007 Sue Claridge