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Kathy Smith: Welcome, Susan. How are you doing?

Susan Love: Well, I’m very good, and it’s great to talk to you.

Kathy Smith: And the family? You gave me a couple of updates, but the family’s doing well?

Susan Love: The family is well. My daughter’s now living out in Boston and thriving. My wife is sure she’ll never move back to California again. I said, “Just wait a little bit. Give her a little time.” I think sometimes when you have strong parents, you need to get away from them to grow up.

Kathy Smith: Yeah, I noticed with both of my girls. That’s the case. But, again, proud of their journeys. But, you know, here’s the thing.

Susan Love: Absolutely.

Kathy Smith: We have been together, you know, as parents which is a remarkable job description and I just love that part that we got to share part of that together. But I followed your career over the last 25 years and watched how you’ve help educate women on the topic of breast cancer. But what was interesting to me is that you had this dramatic moment in your life where the roles got reversed. Instead of being the doctor, you became the patient. It’s been interesting reading articles about that journey for you, but can you tell us a little bit about that journey and what you learned from it?

Susan Love: Yeah, it certainly came as a shock and it taught me that the difference between a doctor and patient is just a diagnosis. One day, I went for a routine physical with a doctor who was about to retire, so I wanted to get it in at the last minute. She drew a lot of blood as she always does and I went back to the office. The next thing I knew, I got a call saying, “Come right back. You have 30% blasts in your blood.” Well, I’m a surgeon and I never really paid that much attention to blood things. So, all the way driving back, I was thinking to myself, “Thirty percent blasts. What the hell are they anyway.

I got there and, indeed, I needed a bone marrow biopsy because I had leukemia. It was acute myelogenous leukemia. They said, “You’ve got about a week. You’ve got to come into the hospital.” I ended up getting high doses of chemotherapy. I was in the hospital about seven weeks and, then, I got a week off, then came back for another five weeks when I underwent a bone marrow stem cell transplant from my baby sister.

It was quite an experience. I’m five years out now, and I try to put it in the rearview mirror. But what it taught me was that it’s not just the having cancer and getting the treatments that are the problem, but also the long-term collateral damage from the treatments. And I think we, as a profession, are focused so much on curing people, we haven’t paid much attention to what their lives are going to be like afterwards and what the consequences are. Doctors sometimes euphemistically call it side effects, but it’s really collateral damage. It’s really long-term problems. It’s the fact that you can’t feel your toes ever again, because the chemotherapy killed the nerves in your feet or the fact that I still don’t have taste or smell, because that was killed by the chemotherapy.

Now, I’m happy to be here, but I miss it. I think what we need to do in medicine is along with figuring out how to cure cancers, we have to also pay attention to what the consequences of the cures are, because they really do impact people’s lives.

So, one of the things we’ve done at the Dr. Susan Love Research Foundation is we decided to ask people what their collateral damage was. And I was a little frustrated that a lot of what’s in medicine right now is what they call patient reported outcomes. But patient reported outcomes are really doctors making questionnaires for patients to fill out. And, so, it’s only the things that the doctors think of to ask. And in actual fact, what we really should do is just ask the patient. So, we just put it out there and asked people in free text to tell us all their collateral damage. We’re now working on a collateral damage project of really defining both what it is and what, maybe, we can do to make it better or at least improve things for people who have gotten through the treatment but now are dealing with all the consequences.

Kathy Smith: So, just initially, what do you see as some of the collateral damage that maybe you didn’t suspect before?

Susan Love: Well, we certainly knew about things like chemo brain. But there’s a lot of other ones. One thing that really surprised me–we did a project particularly in women who had metastatic breast cancer. So, now, their cancer has already spread, and it means that they’re going to ultimately die of breast cancer. We can keep them alive for a period of time with different treatments, but we can’t cure them.

So, in that population, the collateral damage is even more important. If you’re only going to have four or five more years, you would really like them to be the optimal quality you could get. So, we did this project where we asked people what their collateral damage was, and we analyzed it with some researchers at UCLA and the City of Hope. Then, we presented it in a conference where we had both people who were living with metastatic breast cancer and, then, we also had provider survivors – doctors or nurses, people in the health care system who also had had at least a cancer experience. Because I was afraid if we just had doctors, they would just dismiss everything and not pay attention. But if we had people who had been on both sides, we might be able to come up with some recommendations. And the big surprise to me was that the people who had the most difficulties were the women who had metastasis to their bone.

The reason that surprised me is because as physicians we usually dismiss that, because it doesn’t kill you, whereas metastasis to your brain or your liver or to more important organs may well lead to killing you – to your death. But in the bones, it doesn’t because they’re not critical for living.

However, they cause pain. And that pain really does interfere with people’s lives. One young woman who had young kids said, “We have to eat on paper plates in my house, because I can’t empty the dishwasher because of the pain in my back from the metastatic breast cancer.” That really woke me up to the fact that even I think I’m so highly conscious and, yet, I had missed that completely.

So, it shows how important it is to have people who are living with the disease or have experienced it at the table to tell their experiences, because they’re not necessarily what the researchers or the physicians would think of.

Kathy Smith: Yeah, it’s interesting. It’s a brilliant solution and, yet, such a simple process – like go and ask the people that are going through that stuff.

Susan Love: Yes, indeed. As opposed to making a questionnaire that they can fill out, but if you didn’t think of it, you wouldn’t have asked the right question.

Kathy Smith: Yeah. So, let’s switch over into screening because we’re talking about cancer right now. But let’s talk about breast cancer and let’s get into the checklist of different things you’ve talked about in your books. But let’s just start with the screening, because it’s the one that almost every woman over the age of 40 is going through and you kind of have a little bit of this trepidation that you’re going to go to this exam room and your boob is going to be squished into a machine and, then, you have to wait to find out the results. And I always find my armpits are sweating a little bit more when I go for that exam.

But they’ve shifted the recommendations one way and the other. Right now, according to the American Cancer Society, it’s women over 40, they have an option to start. But definitely by the time their 45, you should be getting a mammogram every year. And women 55 and older can switch to every two years. Tell me how you are feeling about those recommendations. Is that in line with your thought process?

Susan Love: Yeah. I think they’re generally in line. I think the problem is we have oversold mammography as if it can find every cancer at an early stage and you’ll be cured. Really, it depends on a number of factors not the least of which is that mammography is looking at shadows, and if you have dense breasts, if you have a lot of tissue in your breasts, it can easily hide a cancer. So, mammography will become less accurate. In the women with dense breasts, it may make more sense to do something different like whole breast ultrasounds for example, which would be better able to pick something up until you go through menopause and your breasts get less dense and, then, maybe mammography will be more useful.

MRI is sometimes used particularly in women who have the gene, carry the mutation for breast cancer or have very strong family history. It’s very sensitive and sometimes too sensitive. It finds a lot of things that aren’t really cancer in you. But in the people with dense breasts or who have a strong family history, that is often the way to go. So, I think the idea that mammography’s going to do it for everybody is not exactly right.

The other part is that the whole notion of early detection is really not exactly right. We initially thought that cancer started in your breast, got slowly bigger, went one by one up the lymph nodes and then got out. So, if we could rush in there, do a big operation, slam the door by taking off the breast and the lymph nodes, we could prevent you from dying of breast cancer. It now looks like it doesn’t work that way and that even sometimes before you have anything that you can see on a mammogram, sometimes some cells have gotten out.

Now, those cells are like immigrating out of the breast to other organs. Some of them may die in the traveling for them to get there. Some of them may not be able to set up shop in another organ. But it certainly is possible and probable that most people who are diagnosed, a few cells have gotten out before we got there. So, the idea that mammography is going to help you–will absolutely ensure that you find it early or even that breast self-exam, which we did even before that will do that is not exactly right. What we really need is to figure out how to prevent it from happening in the first place.

When we were young, cancer of the cervix was a big problem. I know a lot of my friends or people I knew had an abnormal pap smear and ended up with a hysterectomy and losing their fertility because of cancer of the cervix. Now, we know it’s caused by a virus and you can get a vaccine and you will never get cancer of the cervix. That’s really phenomenal and that’s what we need for cancer of the breast. It’s not to find it early, but it’s to not get it in the first place.

Kathy Smith: Yeah, which I want to switch over to because I completely understand. I’ve kind of worked my entire career of trying to help people live certain lifestyles to prevent all sorts of diseases including cancer. And we’ll get into it how exercise and eating certain foods and environmental exposures contributes to different types of cancers.

Before we switch, I just want to make sure I don’t lose this train of thought which you mentioned early detection. I’ve been reading and hearing on the news about new tests – these blood tests – that I think came out of the U.K. where you might find cancer cells in the blood to be able to detect a little early. Is there any promise for that?

Susan Love: It’s hard to know. It’s getting a lot of hype, but it’s technology that we haven’t really yet proven. We’re able to find these cells by looking for abnormal DNA, but we don’t know what they mean. Could it be that these are the cells that–just because you find them in the blood doesn’t mean that they can get into another organ and spread. Or it doesn’t mean that it’s going to kill you.

So, I think that what often happens in this country, technology gets ahead of the clinical utility. We know how to do it so we make up all these uses for it, and we’re not quite sure what it’s going to mean. Will finding those cells mean that you have cancer somewhere else or does it mean that the immune system’s getting a chance to see the cells and, therefore, will be able to knock it out? We don’t know.

Kathy Smith: This is a different blood test or this is a different screening than the one that my friend, Sarah Gottfried, had recently where she discovered the CHEK2 gene.

Susan Love: Right. That’s something different. Yes.

Kathy Smith: That they’ve popularized with genetic testing. This is actually what they’re trying to do is get a blood test going. I see. So, it’s two different tests.

Susan Love: It’s a blood test looking for the abnormal DNA that could come from a cancer.

Kathy Smith: Ok.

Susan Love:  Do you know what it’s like? It’s like the TSA. It’s looking at all these cells and it’s trying to pick out the person that might possibly – because they have too big a bottle of shampoo – they’re going to take down the plane.

Kathy Smith: Ok.

Susan Love: Ok, it may be true, but it might not be true. So, I think we just need more on that. Now, the other what you’re talking about is some people have inherited a mutation from their mother or their father that is in every cell in their body, but which makes them more likely to get breast cancer. There are a couple of mutations that are more common in people of Ashkenazi Jewish decent. That’s the BRCA1 or BRCA2. As we’re finding out, we’re all sort of mixed. It’s interesting, some recent studies have shown a mutation in the Latino women in L.A. that traces back to an Aztec mutation in Mexico. There’s another. The African American women tend to have a mutation that traces back to western Africa where the slave trade started.

So, we’re finding that some of these genetic mutations if you have a strong family history where you have people who have had breast cancer, particularly pre-menopausal, your mother or your father’s sisters, you might want to be tested. That’s a blood test. That will tell you whether you’re at higher risk for breast and ovarian cancer. Then, that’s when people, depending on their risk, start to think about whether they want to do something as drastic as preventative surgery.

Kathy Smith: Right. And you cross that road when you get the results back. For everybody, whether you have genetic predisposition or not, lifestyle’s an important factor and it something that we’ve discussed. I remember at one point–I don’t remember what year it was but, actually, you came up to me and you said you started running. I think you were going to run the Boston–did you run the Boston Marathon?

Susan Love:I did. Yeah, I did.

Kathy Smith: I was so proud of you. Go! Let’s just break it down to what are some of the major lifestyle factors that can help reduce anybody’s chance of getting breast cancer?

Susan Love: The way to think about it is you need self and they need to be in the neighborhood that’s egging them on. So, the lifestyles that probably doesn’t affect whether you get a mutation or not, that’s more likely to be either you inherited it or radiation or maybe carcinogens in the environment. What it can do is change the neighborhood around it. So, if you have one mutated cell, but it’s just sitting there dormant and doesn’t do anything, you don’t really care.

That’s where things like exercise, which has been associated with the lower risk of breast cancer, eating a healthy diet high in fruits and vegetables, low in animal fats and different forms of stress reduction from meditation to prayer, whatever works, whatever is a good stress reduction for you.

All of those have been associated with a lower chance of getting breast cancer. Will they guarantee that you don’t get it? No, nothing will. If it’s an aggressive enough tumor, then they won’t. But they do change the neighborhood of your body and your immune system and how it’s responding. All of those things are beneficial in terms of reducing your chances of getting it or if you do get it, of reducing your chances of it taking over and killing you.

Kathy Smith: So, part of it is just pumping up the immune system to handle what your body throws at you. I interviewed Dr. Valter Longo on the show recently and he’s a researcher at USC who’s done a lot of research on intermittent type of fasting. With this idea that if on a regular basis you could maybe cut back calorically to the point where you let your body repair itself. You let it go through and find cells that are a little out of whack or aren’t performing properly and just do a yearly cleansing. Do you have any thoughts on that?

Susan Love: I think it’s an interesting hypothesis. Unfortunately, we don’t really have any hard data on it, so it’s more hypothetical at this point. It would be great to do a big randomized trial and see. Because I think all of these things certainly from traditional medicine, we poo-pooed in the past are sort of coming back around and we’re starting to realize how important they are and that even for people who have cancer, what is it?

Most people who are diagnosed with breast cancer probably have some microscopic cells elsewhere in their body. Some of them live their whole lives and die of something else and some of them all of a sudden, the cells will come back again. What put them to sleep and how can we keep them asleep forever and what wakes them up? That, we don’t know. And I think that’s where a lot of the rest of the body, the neighborhood probably is critical. It would be great if we spent as much money really on doing the scientific research to get the underpinnings of some of these as we do for chemo and how it’s poisoning cells. We might be able to get further along, but since a lot of this stuff doesn’t make a lot of money, it gets less research. The chemo therapy makes a lot of money, so it gets more research.

Kathy Smith: As far as looking at the numbers of women in the United States, it looks like about 40,000 women are still dying every year from breast cancer. I think it’s about a quarter of a million of women are still being diagnosed with breast cancer every year. Those women are having to live with some of the collateral damage that you mentioned in the beginning – besides side effects, collateral damage. Going to back when years and years and years ago when you said, “It’s my goal in my lifetime to eradicate cancer,” are we going in the right direction? Are we getting close? Do we have the research money and are we collaborating? I remember Stand up to Cancer was this effort to get all the different organizations working together for a cure. Can you just tell me the latest in that area? Are we working towards that?

Susan Love: We’re definitely getting better. Some of our targeted treatments – herceptin – we now know there’s different kinds of breast cancer and that if you give the right kind of treatment that matches the right kind of cancer, that does better. So, there’s are kinds of breast cancer that used to kill people when I first came out to L.A. that, now, we do much better with. The people who have what’s called HER2 Neu totally sounded like something that you should put on your hair. It’s really an oncogene–I look better since I have HER2 Neu. But it’s an oncogene that tells the cancer to grow faster and stronger and we now have drugs that specifically block that. So, targeted therapy that makes a big difference.

We have better chemotherapy drugs than we had before. So, we are making progress. But I do think that we don’t pay enough attention – and it’s an area I’m still working on – on how to prevent it in the first place. I go back to the cancer of the cervix that I mentioned earlier that within our adult lifetime, we figured that one out. We know, now, that cancer of the stomach is caused by a bacterial infection. We know a lot more about cancer and how it starts and how to prevent it but not so much in breasts.

One of the big things that drives me crazy is all the research goes on in rats and mice. Now, rats and mice don’t get breast cancer. You have to humanize them so that you can study them. So, we don’t study humans. The human breast is the only organ that we don’t know the anatomy of. It’s actually, when you think about it, the only organ we’re not born with. So, we’re born with stem cells behind your nipples, but that’s it. Then, not until puberty, then, all of a sudden do they blossom. I always think of it like those sponge animals in a capsule when you put them in water and they turn into a giraffe. The hormones come and these breasts develop and show up.

So, the stem cells grow back into ducts and, then, every month they’re ready and nothing happens. Then, all of a sudden, you get pregnant and they turn into a milk factory. It turns blood into milk. That’s pretty magical. Not only do we make milk, but the milk changes for the age of the kid. So, the milk for a newborn is different than the milk for a six-month-old. Then, at the end of breast feeding, massive cleanup and, then, you make new ducts for the next kid. Do you make them in the same pattern as the first set or are there extra stem cells behind the nipple and they grow out and make a new pattern? We don’t know. Nobody’s ever looked.

Then, you go through menopause and they go into retirement. So, it’s no wonder we get cancer. They have to go through all these changes and really most of the rest of our body doesn’t do that. The uterus maybe, but the uterus we shed the lining every month so we don’t accumulate bad cells in the same way.

So, one of the things we’re trying to do at the Dr. Susan Love Research Foundation is focus our research on women. We’re trying to match the anatomy of the human breast and, then, we’re looking at the microbiome of the human breast. It’s very interesting. They did the human microbiome project and they looked at all these different organs and mapped all these bacteria and viruses that might be there, but they didn’t do the breast. It just didn’t occur to them.

Now, the breast gets sucked on by lots of people and babies, so it’s probably got bacteria and viruses in it. We did a study that showed that, indeed, they’re there in the ductile fluid and that there may be a protective bacteria. If you were Mother Nature, you would want the people to reproduce to live. So, maybe there is protective bacteria you get from breast feeding and from sexual activities.

We know that nuns have the highest rate of breast cancer and maybe that’s because they don’t have anybody sucking on their nipples. I don’t know. But it’s a hypothesis. That’s the kind of things that we really have to think about, because we don’t know the answers. We don’t know why some people get it and some people don’t. We don’t know where you get. And if we had a map, maybe you could squirt something down the duct and clean it out so you wouldn’t accumulate extra cells that turn into cancer.

So, there’s a lot of research that needs to be done that people have just totally not thought about. And that’s what we’re trying to do at the Dr. Susan Love Research Foundation.

Kathy Smith: It’s interesting how you’ve explained it and how complicated through the different stages between birth, puberty all the way up to pregnancy and menopause. Another aspect of what’s going on during all that time is we have these fluctuating hormones, and with modern society, we’ve also found ways, for good or for bad, to supplement these hormones – as teenagers, with birth control, as you get into menopause with hormone replacement. People have been talking about it, and I know you have had strong opinions about that through the years. But it’s interesting how [inaudible 00:33:09 to 00:33:13]

Susan Love: It’s interesting with–there was just a recent study out and you’re right. I was very much opposed to hormone replacement therapy. It’s one of the few areas in medicine of women’s health that we have randomized controlled data saying that the long-term use of it is dangerous and increases breast cancer and Alzheimer’s and a number of other problems.

However, the study just came out in the last month or two showing that short-term use – three or four years – is actually probably safe. So, it’s good that we have more data and people who are really having a hard time going through menopause, it looks like taking hormones for about four or five years to get you over the hump until everything evens out is probably safe, while long-term use is probably still not a good idea.

Kathy Smith: Ok. What about one really random question here? I probably should’ve asked it in the beginning of the episode. It might be one that I go out on. But you have dedicated your life to this mission. What actually got you involved in this? What was the turning point in your life that you said, “I want to make this a mission of mine.” You’ve done such a good job, but I don’t know if I’ve ever heard that story.

Susan Love: It’s interesting, because people always wanted me to say I was at my mother’s death bed or something like that. But in actual fact, when I went to medical school, there were still quotas as to how many women they would take. In fact, in Title IX, a lot of people forget when it came out first, it wasn’t sports. It said, “If you take federal money, you can’t discriminate.” The law schools and the medical schools had to get rid of their quotas. So, when I went to medical school, there were still quotas. When I trained to be a surgeon, there were no women. Needless to say, I had a lot of problems with that. But I was chief resident at one of the Harvard hospitals and, then, nobody offered me a job. I hung up a shingle and the only patients that I was sent were women with breast problems. God forbid, I do a hernia on a man.

So, it was really sexism that led me into breasts. But the nice thing was there was a lot of research going on in breast cancer; whereas in the rest of surgery there really wasn’t. We learning then that a lumpectomy and radiation was equivalent to mastectomy. We had good randomized studies. We had a lot of data on what treatment would be best. So, that attracted me a lot because I felt like, at least, we had science behind our recommendations and behind what we were doing. So, what started out as a career ended up a mission and I’ve been plugging away ever since.

Kathy Smith: Including plugging away with your Act with Love program, which I’m going to tell the listeners about. Susan’s got a program called Act with Love. There’s a website you can go to, which we’ll have in the notes below the podcast. Part of this is raising these critical funds in awareness for her foundation’s research. It’s really simple, because what she is doing is she’s encouraging people to create their own events and campaigns and engage friends and families in ways that are meaningful and motivating. It doesn’t have to be something grand. It can be anything big, middle or small.

Susan Love: In between.

Kathy Smith: In between. An example might be you hold a yoga benefit class or you take a daily step challenge with a friend of yours. What I’ve decided to do as my tribute here is I’m going to make a commitment by next birthday to encourage all my friends and family to donate to Act with Love – instead of buying me a gift or flowers or a candle or something like that – to make this donation. Those are the type of things we all can do to kind of do our part in helping to solve this and perhaps in our lifetime coming up with not just the cure but a way to prevent breast cancer. So, I thank you for that.

Susan Love: You’re welcome. I want to add one other thing you can do if you–and that is great. We can use all the help we can get. But you can also join the Army of Women. I said there’s a lot of problems with not a lot of research on women and that’s scientists say they don’t know how to find them. I said, “Well, I do.” So, you can sign up to be in the Army of Women. What that means is you will get emails from us when there are studies, telling you what the studies are. They could be anything from trying out a new chemotherapy to looking whether exercise or diet has something to do with breast cancer. You look at it and if you fit and you want to be in it, you RSVP, and if you don’t, you don’t. Or you pass it on to somebody you know who might fit. So, through the Army of Women, we’re able to get more research on women and get the research done faster. That’s also a way that you can participate and help to get us there faster.

Kathy Smith: Fantastic – Army of Women. We’re going to have all these websites listed below so you’re going to be able to reach Susan in a lot of different ways. I just want to thank you out there for listening. If you’re interested in any other podcasts, remember there’s a lot of great ones including Diana Nyad talking about how she swam from Cuba to Florida and what that journey was about. Dr. Zach Bush sharing his kind of groundbreaking research on the importance of healing your gut and making sure you have a healthy gut for a healthy body. But the main thing is check out some of the other podcasts. If you love this podcast, pass it along to your friends and let’s tackle this one. I thank you, Susan, from the bottom of my heart. I love the fact–.

Susan Love: Thank you, Kathy. If you send me a link, we’ll put the podcast on our site as well.

Kathy Smith: Ok. Sounds great. Thank you.

Susan Love: Ok. Great. Thank you all.

Kathy Smith: Nice talking to you. Bye-bye now.