Treating and Surviving Cancer in San Diego

MAUREEN CAVANAUGH (host): They are cancer survivors, and their numbers are growing. On the eve of National Cancer Survivors Day, which is this Sunday, we thought it a good time to hear about the struggles and the triumphs of battling cancer. There are many exciting areas being explored by cancer researchers from stem cells to cancer vaccines to immune-based therapies. But no matter what breakthroughs may be on the horizon, it still takes courage to accept a cancer diagnosis, it takes courage to go through the treatments, and it is a badge of courage to get back into the swing of life after winning a battle against cancer. We have some guests in studio with their personal stories to tell but we'd also like to open up the phones to our listeners to share their cancer survival stories with us. What would you like to tell other people struggling with cancer? Do you have a cancer survivor in your family? Give us a call at 1-888-895-5727, that's 1-888-895-KPBS. To give us some background on the prevalence of cancer in our community, I'd like to welcome my first guest, Dr. Michael Kosty. He's Medical Director of Scripps Cancer Center at Scripps Green Hospital. And welcome, Dr. Kosty.

DR. MICHAEL KOSTY (Medical Director, Scripps Cancer Center): Good morning. Thank you for having me.

CAVANAUGH: Well, what does it mean medically to be a cancer survivor? Are you cured of cancer?

KOSTY: Well, in the strict sense cure means that you go on to lead whatever life you were destined to lead without having the cancer return. And these days we're curing about two-thirds to 70% of all people who are diagnosed with cancer and that's up from about 50% ten years ago. And when I started in this field in the early 1980s, the cure rate was only about 33%, so we really have made tremendous strides.

CAVANAUGH: Give us a little background so we know what we're talking about. How many different types of cancer are there?

KOSTY: Well, theoretically, any organ in the body can be impacted and so cancer, unlike the conception that many folks have, is not really a single disease, it's really a hundred different diseases with probably as many different types of treatment and as many different outcomes. And so some cancers like breast cancer and lymphoma and testicular cancer are highly curable, other cancers like pancreas cancer are more difficult and more challenging. And so it's a trap that many people fall into to try to lump all cancers in one basket.

CAVANAUGH: And is cancer still a leading cause of death in the United States?

KOSTY: Cancer is actually now 'the…'

CAVANAUGH: The leading…

KOSTY: …leading cause of death. It's surpassed heart disease and that's actually a tribute to my colleagues in cardiovascular disease who have made great strides in the treatment and, as importantly, the prevention of coronary artery disease. And it's not a defeat for cancer; I think there have been great strides in cancer treatment but as people are living longer and not having problems from other causes like diabetes or lung disease, the chance of contracting cancer increases. And, of course, there are lifestyle issues that we still haven't conquered.

CAVANAUGH: Exactly. And does that hold true in San Diego County, is cancer the leading cause of death here?

KOSTY: It is, and about 5,000 people will get cancer in San Diego County and about 1,000 of those individuals will, unfortunately, die of their disease.

CAVANAUGH: What is the connection between people living longer and there being a higher incidence of cancer?

KOSTY: Well, the body continually repairs itself whether you spend time on one of our fantastic beaches exposing yourself to the sun or whether in the past you've been a smoker or other, quite candidly, unknown causes. The body is exposed to these potential cancer causing agents and continually repairs itself and as we age, to some degree, all of us, the repair mechanisms become a little bit less efficient. And then for some of us, lifestyle issues, either poor diet or, again, history of smoking, as two common examples, overwhelm or tax those repair mechanisms and once cancer gains a foothold, it needs some intervention, outside intervention, to help eradicate it.

CAVANAUGH: I've heard it said that people used to die of other diseases before they got cancer, before their bodies started to go erratic as they got older and develop tumors and so forth. Is that holding in the research? Are we getting better at curing other diseases, so we're getting old enough to get cancer?

KOSTY: That's part of the problem and I think the other issue that's come up is that we are actually making strides in improving the body's immune response as we age which, again, in many folks becomes a little bit less efficient than it was when we were in our prime. And the other issue that's come to fore is that as people live longer, the latent period for exposure – for example, if you were a smoker in the past and quit 30 years ago, you're still at risk over somebody who's never smoked. One of the issues that is poorly defined at this moment but which is a problem is in urban environments there are risk factors which are not completely identified which put individuals at risk for certain types of cancer like lung cancer, for example. One of our tragic and great mysteries at the moment is the number of individuals who have never smoked who are contracting lung cancer, a problem particularly with younger women.

CAVANAUGH: Now are there particular types of cancer that are on the rise?

KOSTY: Lung cancer is on the rise, prostate cancer is on the rise. Other types of cancer like breast cancer and colorectal cancer, for example, are on the decline, and then there are a number of other conditions like lymphoma, stomach cancer, for example, which are relatively flat in incidence.

CAVANAUGH: We are talking about National Cancer Survivors Day and we're about to speak with two survivors in the studio here at KPBS. My guests are – I've just been speaking with Dr. Michael Kosty. He's Medical Director of Scripps Cancer Center at Scripps Green Hospital. We are taking your calls. If you'd like to share your story about battling cancer, call us with your questions or comments. The number is 1-888-895-5727. And I'd like to introduce my two other guests now, two women who are cancer survivors. Judy Turner, real estate agent, whose non-Hodgkins lymphoma has been in remission since 2008. And welcome, Judy.

JUDY TURNER (Cancer Survivor): Thank you.

CAVANAUGH: And Lydia Morales Hoffman, educator and former professional ballet dancer, who is in remission from breast cancer, and welcome, Lydia.

LYDIA MORALES HOFFMAN (Cancer Survivor): Thank you so much.

CAVANAUGH: Judy, you've survived two bouts of non-Hodgkins lymphoma. When were you first diagnosed?

TURNER: The first one was in, I believe it was in March of 2000, and the second one was in July of 2007.

CAVANAUGH: And what cancer treatments have you had?

TURNER: It was the same both times. I had chemo and I was in a study for what I call a miracle drug, Rituxan, the first time and the first treatment – I had a very swollen leg as a result of a tumor, and the first treatment my leg had reduced by half, I think. So they – the study was so successful they stopped it and just started using it, so that…

CAVANAUGH: Oh, that's interesting.

TURNER: Yeah, and then in the second time, that was an automatic part of the treatment.

CAVANAUGH: Now what was your reaction when you were first told you had cancer?

TURNER: Well, I'm kind of strange. I kind of set things aside until I'm ready to deal with them. And I got it over the phone and I was going out in the car on what we call a caravan for real estate. And I think I told the other gals that I was riding with and was kind of numb. I didn't even know what lymphoma was at the time. So when he told me I said, what's that, you know. And so I kind of let it seep in as I was ready to absorb it.

CAVANAUGH: I wonder, Dr. Kosty, is that typical? Do people get diagnosis like this over the phone?

KOSTY: Usually not, although sometimes patients are very anxious. I always try to put myself in the position of – and I'm one of the – I'm type A-plus, I think, and I would want to know immediately what goes on, so sometimes people will call. But usually we like to get together because, invariably, with the diagnosis comes a large number of questions and concerns and an understandable anxiety.

CAVANAUGH: Well, Judy, as you say, you sort of like didn't know how to deal with this news. I wonder, when did you resolve, okay, and how did you resolve, okay, I am going to get these treatments and I'm going to go through it and I have the strength to do this?

TURNER: Oh, well, I think as Dr. Kosty said, we always have questions, so that came up. I would recommend actually to the doctors that they ask the patient when they're getting their tests how they'd like to hear it. You know, because I was okay with getting it over the phone but then when I had time to absorb it, I wanted to go in and find out everything I could find out. And so it – I kind of always know that I'm strong and I can go through it. And that sounds kind of cocky but I don't fold easily so I just saw it as kind of a bump in the road that I had to go through to get to the end. I never saw it as terminal for some strange reason.

CAVANAUGH: You just always thought that this is something that I'm going to beat.

TURNER: This is a pain in the neck, yeah. It's interfering with my life so…

KOSTY: That's actually an important point, I think. For most cancer patients, it really does turn into a bump in the road.

CAVANAUGH: Yeah.

KOSTY: I think it does force you to look at your mortality and it forces you to make certain lifestyle changes but a cancer diagnosis is not—I repeat is not—a death sentence, and I think it's important for our listeners to really understand that.

CAVANAUGH: Before we meet Lydia, let's take a phone call. Donna is in Carlsbad, and good morning, Donna. Welcome to These Days.

DONNA (Caller, Carlsbad): Yeah, good morning. Can you hear me okay?

CAVANAUGH: Yes, we can.

DONNA: I just wanted to ask the physician, my husband, nineteen years ago, was diagnosed with a soft tissue sarcoma and I remember asking his oncology surgeon what he thought may have caused it because he was in his low-thirties. And he thought it might be exposure to pesticides and he didn't know that my husband, as a young adult, worked in a greenhouse. And I'm wanting to know if, number one, the physician knows anything about an increase in sarcomas and if there's been a link through empirical evidence of sarcomas and pesticide exposure.

CAVANAUGH: Well, thank you for your call, Donna. And, Dr. Kosty?

KOSTY: Well, the honest answer is that for most tumors, sarcomas included, there's not really one etiology. I know the experience of our troops in Vietnam, being exposed to Agent Orange and other pesticides there resulted in an increase to a slight degree in sarcomas, a large number of individuals with lymphomas. And so I think that that's fostered an increased awareness of occupational and environmental hazards and all the regulation that's come about, which those of us that have to deal with it perceive as onerous but I think, in the long run, is actually good for our public health.

CAVANAUGH: Let's take another call. Nancy is in Carlsbad. Good morning, Nancy, and welcome to These Days.

NANCY (Caller, Carlsbad): Good morning. Yes, Dr. Kosty, my son was diagnosed with testicular cancer at sixteen and he's four years out of that and he's had his yearly CAT scans and a couple of surgeries. And I've read a lot on the internet about the high occurrence of – the reoccurrence of cancer with the CAT scans and the high dose of radiation and I'm just real paranoid about having – he's up for another CAT scan and I feel real nervous about that.

KOSTY: Well, I think that's actually an excellent question and a very common question. First of all, the fact that your son is four years out almost certainly means that he's cured at this point. Most people with testicular cancer that relapse are going to relapse within the first two years. That said, the reason we do any test, whether it's a blood test or a chest x-ray or a CAT scan, is to gain information. And his situation is different from what your situation might be as someone who's healthy and doesn't really have particular risk factors so we don't want to go around doing CAT scans on everybody just because we can but in situations like his where you have, really, the possibility of detecting a recurrence that might, again, be treatable and curable, that benefit outweighs the risk of radiation, which by the way is getting less and less with each generation of CAT scan machine.

CAVANAUGH: Sunday is National Cancer Survivors Day and we are honoring it a few days early with a talk about cancer survivors. We will continue with that. We have to take a short break. We're taking your calls if you'd like to share your stories with us, 1-888-895-5727. We'll be back in just a few moments.

[ break ]

CAVANAUGH: I'm Maureen Cavanaugh. Welcome back. You're listening to These Days on KPBS. And statistics tell us there are now ten million cancer survivors in the United States of America. We are on the eve of National Cancer Survivors Day and that's what we're talking about this hour on These Days. My guests are Dr. Michael Kosty. He's Medical Director of Scripps Cancer Center at Scripps Green Hospital. And we are listening to the stories of cancer survivors if you'd like to share your story or if you have a question or comment, give us a call. The number is 1-888-895-5727. Before we took the break, we met Judy Turner, she's one of the people here in studio talking, sharing her story with us. And Lydia Morales Hoffman is also here. She's educator and former professional ballet dancer who is in remission from breast cancer. And welcome again, Lydia.

HOFFMAN: Thank you so much.

CAVANAUGH: Now I asked Judy this same question and I'd like to hear from you. How did you react when you were given your diagnosis?

HOFFMAN: Well, I always got my annual mammogram. In October 2007, there was an irregularity so they had me come back and have a biopsy done. At that time, the doctor who did the biopsy basically looked at what she saw and said it looks suspicious. And of course then I had a few days to prepare myself for the news that it was cancer. I then met with my primary physician, it was an appointment, I made sure my husband was there, and he walked in the room and he said, it's cancer. My reaction, actually I have to confess I listened to a "Bridge Over Troubled Water" on my way in to the doctor's appointment—I love Simon and Garfunkel—and it was kind of an unevent – it's a non-event, I guess, because I – it wasn't a big drama, it wasn't a big emotion. My main feeling was I want to find out what I need to do next. And Scripps was wonderful in that they lined up all of the appointments that day. They said, this is who you're going to see, this is what you need to do, this is who you need to talk to, and that all got done. And I have to say that my gut feeling, like Judy's, was I think I'm going to be fine. I felt like 98% of the chance is that I'm going to be just fine.

CAVANAUGH: What kind of treatments did you go through?

HOFFMAN: Well, I had two surgeries and those were in the fall. And then following that, I underwent chemo. Now I was a stage 2 breast cancer so there was choice there. My oncologist said we don't know what – if chemo is going to help or not in the mid-risk area, and it was just right over the line. I had to make a choice and that was kind of painful. But I chose to do the chemo, three months of that and four sessions, and then after that I underwent radiation, that was about 36 sessions of radiation treatment, every day going to Torrey Pines, and finished about this time last year.

CAVANAUGH: And you're a former ballet dancer so you have perhaps a more intimate connection with your body than a lot of…

HOFFMAN: I do.

CAVANAUGH: …a lot of us, we kind of lose…

HOFFMAN: Yes.

CAVANAUGH: …touch maybe, as time goes on. How did you connect with your body to fight cancer?

HOFFMAN: Well, I have to say I came from a point of strength. At the point that I was diagnosed, I had been physically active and exercising. And, you know, as you get older and as a dancer, it's kind of a double-edged sword because you do need to keep on exercising. At that point, I just basically decided that I really needed to keep – do more exercise than I was doing. I kind of turned to Pilates and to yoga and to the elliptical and walking around like Ben Murray, eating good things. All of those things seemed to help, and the main thing, I think, was really talking to myself and thinking as positively and focusing on wellbeing as best as I could. I had that right on the forefront of my energy. And I was actually able to continue my working with student teachers in the field, in the South Bay, and I also did teach a ballet class every week as I was going through chemo.

CAVANAUGH: You actually joined a creative writing class of people who are, or were, battling cancer, and I'm wondering why you did that.

HOFFMAN: Curiosity, I guess.

CAVANAUGH: Umm-hmm.

HOFFMAN: It was on the flier in my oncologist's exam room and I looked at it and I'm an educator so I thought, oh, this is interesting. I've written in journals before but I might learn something. So I signed up, I thought – and it's free…

CAVANAUGH: Umm-hmm.

HOFFMAN: …and Scripps offers it. And Sharon Brae, who facilitates this session, eight week session, and, you know, there's about four throughout the year, is wonderful. So in some ways I was thinking a support group but this is not a support group, it was wonderful because it was a nurturing environment, a safe environment, non-judgmental, where we basically wrote whatever came up and shared if we wished to, or not. We didn't pat each other on the back or give hugs or whatever, but we commented on the writing, and it was just a really wonderful way to connect to yourself in a deep way and bring up something that was authentic in terms of writing. It was terrific.

CAVANAUGH: Now you're going to read something for us…

HOFFMAN: Yeah.

CAVANAUGH: …that you wrote…

HOFFMAN: Sure.

CAVANAUGH: …during – in that course. And could you please set up the piece before you read it?

HOFFMAN: Sure. What happens is that Sharon, when she facilitates this class, she often has us close our eyes and go through a visualization. And a lot of the people in the class are coming from different points in their cancer, cancer therapy, some are very ill, some are – well maybe – I mean, I wasn't feeling really, really ill. I mean, I was going through my thing but – So she does a visualization and then she gives us a prompt and this prompt had to do with the journey. You know what, it was early on so I can't remember exactly what it was but it was just something that came out, and her point, the way she addresses it is, honor whatever bubbles up. And so this is what came out.

CAVANAUGH: Okay.

HOFFMAN: The voice was always inside of you, sometimes you paid attention, sometimes you didn't. Just like the cancer, it's always there. It is just a matter of whether it chooses to show itself or not. The journey, so much fullness sometimes, so many distractions, like a train ride with its twists and turns, ups and downs. Looking out the window during a quieter moment, thinking about what might be, thinking about what has come to pass. What about feeling? What did my heart say during those times? All those times, even as an adolescent when the tears came out relentlessly, trying to make sense of my path, trying to see how life could be tweaked a bit to make it better, forgetting that the inner voice was still there gently guiding you along, ever present, ever loving, knowing, trusting a little more with these days, being what is important and finding happiness in the present.

CAVANAUGH: That is Lydia Morales Hoffman. She read to us an excerpt from the journal that she kept during a creative writing course while she was battling cancer. We are talking about people who have survived cancer in honor of National Cancer Survivors Day. It's coming up this Sunday. I want to reintroduce my guests if I can. Dr. Michael Kosty is here. We have Judy Turner, who has been in remission since 2008 and, of course, we just heard from Lydia Morales Hoffman. We're taking your calls at 1-888-895-5727 and there are a lot of people who want to get involved in the conversation right now so let's take a call. Susan in Carlsbad is on the line. And good morning, Susan, welcome to These Days.

SAJE (sp): (Caller): Hello?

CAVANAUGH: Hello, Susan.

SAJE: Hi, this is Saje, actually.

CAVANAUGH: Oh, okay. Yes.

SAJE: My name is Saje. I lost my parents from lung cancer. My father was 47, and I lost my mother when she was 60. My father was smoker but my mother wasn't smoker, she was non-smoker, and she was walking and eating and having good diet. The reason I called is, since I assume I'm at high risk and what would be the preventive way for me? I workout and I eat very healthy but I believe I'm still at high risk because of my parents' history.

CAVANAUGH: Well, thank you for that very much. That brings up a very important point, doesn't it Dr. Kosty? Is there – Does cancer run in families?

KOSTY: Certain cancers do. Lung cancer is not one that's typically considered to be a genetic disease but there's a lot, admittedly, that we don't know and that's actually a perfect segue into some of the research that's being done on genomics both at Scripps and other places around the country. And perhaps the caller would want to look into participating in the genomics project that we have where individuals can give a sample of their DNA, which is basically a blood sample, and have it analyzed and find out whether they are at risk for particular types of tumors. In her particular case, I think her biggest risk factor is being around people in the past who were smokers, her father, as an example. And I always encourage patients, if they are concerned, to contact their physician, express those concerns to he or she, and there are some exams and test that can be done to confirm or refute their concerns.

CAVANAUGH: And I just wanted to make the point, Saje said that she is trying to lead a healthy lifestyle. I suppose that would be one really strong way to try to defend against whatever – whatever is in the past.

KOSTY: Well, it's important for all of us, isn't it, to…

CAVANAUGH: All of us, yeah.

KOSTY: …lead a healthy lifestyle. I think the diet that most of us would assume is a good one, low fat, a high anti-oxidant diet, is good. Exercise, as Lydia pointed out earlier, is very, very important. And I think whether you're coming at it from a perspective of cancer or diabetes or just overall good health, I think it's important to lead an active lifestyle and avoid those things that we know puts you at risk.

CAVANAUGH: And, Judy, I'm wondering, do you live a healthier lifestyle now?

TURNER: I have to admit I don't.

CAVANAUGH: Oh, that's interesting.

TURNER: I was working out a lot. I just…

CAVANAUGH: Uh-huh.

TURNER: …and I've got to join a new gym. I just cancelled my gym.

CAVANAUGH: I see.

TURNER: In fact, I was just thinking that while Dr. Kosty was talking. I have got to get back to working out a lot.

CAVANAUGH: Don't we all?

TURNER: Yeah.

CAVANAUGH: Let's take another call. Steve is in Solana Beach. Hi, Steve.

STEVE (Caller, Solana Beach): Yeah, good morning. Question with regard to cancer prevention or protection. I'm a chiropractor and I do a lot of functional medicine work and I've seen some good science supporting adequate vitamin D levels and reduced risk of particularly breast and colorectal cancer. I just wondered if the doctor could speak to that, please.

CAVANAUGH: Thank you, Steve.

KOSTY: That's absolutely correct. There are increasing amounts of evidence that certain vitamins and supplements may reduce the risk of particular types of cancer and, again, we get back to what we talked about early in the program, that cancer's not one disease, it's a multitude of diseases. So as the caller pointed out, that vitamin D has been correlated with breast cancer and colorectal cancer and may, in fact, be important in other tumor types, too. So these are an area of investigation that's really in evolution and I am struck in listening to the two patients here who have overcome their battles with cancer that technology is important but there are a lot of mind and mind/body interactions that are equally or perhaps more important and I think the goal of us who deal with cancer patients is really to combine high tech with high touch, if I can…

CAVANAUGH: Right.

KOSTY: …and really find the combination that works well for an individual. And, again, just like cancer is a bunch of different diseases, each patient is different and so we have to really individualize care.

CAVANAUGH: I wonder, Dr. Kosty, it occurred to me while you were talking, when somebody gets a cancer diagnosis and is in the process of treatment and, with good luck, gets into remission, do some people become sort of obsessed with cancer and constantly looking on the internet and constantly trying to find new things. Does that sort of take over some people's lives after a diagnosis?

KOSTY: The short answer is yes. Fortunately, that's not the majority of individuals. Again, we talked about the bump in the road, and I really think for many patients it's a good opportunity for introspection, for examination of all aspects of their life. And those of us that haven't been impacted with cancer, perhaps have had family members that have, and I think it's really an opportunity that all of us should take advantage of to really look at what we do and how we interact, not only with our environment but with other people. Life is too short to go through a lot of the hassles that we all go through, I think.

CAVANAUGH: Let's take another call. And Richard is calling from Escondido. Good morning, Richard, welcome to These Days.

RICHARD (Caller, Escondido): Good morning. Thanks for taking my call. My question is where does the U.S. cancer survival rate rank with other countries? Are we at the front of the pack? Are we in the top five? Is anyone ahead of us? I'm just curious.

CAVANAUGH: Thank you.

KOSTY: The U.S. cancer survival rate is in the top third. I don't know the precise rank. We're certainly not at the top. Some of that has to do with lifestyle, some of it has to do with the heterogeneity of our population. We're not a homogenous group of individuals as in some countries and that can be good and bad. But there are a number of factors, so it's a really great question, one, the answer to which I think is very, very complex.

CAVANAUGH: Is access to healthcare one of those spokes in the wheel?

KOSTY: It is a contributing factor although I think it's difficult to know where it ranks. Certainly in terms of preventive medicine, we could do a lot better than we do.

CAVANAUGH: I want to take another call. Nico is calling from the SDSU area. And good morning, Nico, you're on These Days.

NICO (Caller, College Area): Hi, how are you?

CAVANAUGH: Just fine.

NICO: So, first off, I just wanted to say to Lydia, I am a creative writer, that's why I'm in school, so I think it's pretty awesome that you ended up taking that class, and it sounds very – a comment for a very good creative writing class so I just think that's pretty awesome. But my story actually is of my father. He was diagnosed with mantle cell lymphoma which basically eats the bone marrow. And he was a very active, healthy, athletic person and he ran every day and all that stuff and the doctor said that that's basically what was going to save him. And because he was so healthy, the cancer virtually disappeared after the first chemo session and hasn't come back since. That was about three years ago, so just a testament to how health can help people through these kinds of things. My father is definitely one of them.

CAVANAUGH: That's an amazing story. Can I ask you, what did you go through when your father got that diagnosis?

NICO: It was very surreal. I'd just started college and I was already, you know, very scattered and the next thing I know, my dad, you know, he had the flu but he didn't have the flu. He went to the hospital and I was the first one to show up to the hospital after he found out. So virtually I just kind of didn't really know what to think but basically we were just hanging off of every word of what the doctor said, and I had faith in his health and my dad's an extremely positive person and I believe that that – that's what helped him through it as well, so virtually I just – basically, I felt very helpless. I just kind of, you know, rolled with the punches as long as everyone else did and that's all I could really do. And I had to keep going to college and keep working but it definitely took a toll on me, I would have to say.

CAVANAUGH: I really appreciate the call. Thank you for sharing your story, Nico. And, yes, go ahead, Lydia.

HOFFMAN: I'd just like to interject, I appreciate the comment about the creative writing and I just want to say that as a person who's been physical most of my life, like your father, ways of healing could be other than writing, too. I mean, for somebody who might just be a writer, they might find that getting up and moving and doing some salsa might do it. Or just playing some music and so – or walking on the beach, whatever it is, all of that is helpful. And I relate to you because my husband and I—and I have a fourteen year old daughter—live with my mother who's in her eighties and diagnosed with ovarian cancer about eleven years ago and that was really a hard time. But we were all together as a family and we worked together, we prayed together, we tried to make it go through well, and she's doing really well. She's been in remission for quite a while. She's outlived the careers of many of her doctors. And I have to tell you, sometimes she's out late at night with the flamencos but she's having a good time, so that's important.

CAVANAUGH: My guests are Lydia Morales Hoffman, Judy Turner and Dr. Michael Kosty. We are talking about cancer survivors in honor of National Cancer Survivors Day coming up on Sunday. We're taking your calls at 1-888-895-5727. We have to take a short break. We will be back in just a few moments. You're listening to These Days on KPBS.

[ break ]

CAVANAUGH: Welcome back. You're listening to These Days on KPBS. I'm Maureen Cavanaugh. My guests are Dr. Michael Kosty and Judy Turner and Lydia Morales Hoffman. We're talking about surviving cancer. National Cancer Survivors Day is this Sunday. Ten million cancer survivors now in the United States, and we're talking about the personal stories and the courage it takes to struggle with and to sometimes defeat cancer. Our number here, if you'd like to share your story, is 1-888-895-5727. On the line right now is Jana in Carmel Valley. I hope I'm pronouncing that correctly. Good morning, Jana, and welcome to These Days.

JANA (Caller, Carmel Valley): Hi. Thank you so much. My husband was diagnosed three years ago with a grade II brain tumor. It came back as an astro – Sorry. It was a grade III and then just recently, two weeks ago, a suspected GVM, which is like the most serious form of brain cancer. And I just have felt that although I've received, you know, excellent and competent care, sometimes I'm forced to be the advocate for my husband because most of the therapies and the techniques they're using are relatively new and almost as if I have had to become an expert on the subject when doctors who've been working in the field fifteen and twenty years can't agree on what the best course of action is. Another thing I've noticed is, at times it can feel like there's a don't ask, don't tell policy when you're speaking with physicians as if, if I don't ask the right question, I'm not really going to get the whole story. And I guess my question is where do you go to find out what the right questions are to ask? You know, for instance, the first surgery, what they said is it was a complete success. We got everything we wanted to and things look really great. And then when the tumor came back, you know, like a year later, they had said, well, I didn't say that I got everything, I said I got everything I wanted to get. There was always a portion of the tumor remaining.

CAVANAUGH: I see.

JANA: So those kinds of, you know, interactions have left me kind of wondering where do I go to find the right questions to ask so that we can make the right decision.

CAVANAUGH: Jana, thank you so much for your call. And Dr. Kosty.

KOSTY: Well, I think, first of all, my comment in general would be when you're dealing with a professional, whether it's a plumber or a physician, you need to have a comfort level with that individual. You don't need to like what you're being told necessarily but you need to feel that you have a relationship, and if you don't have that you really should find somebody else. That said, there are a couple of excellent resources on the internet. One is a website called Web MD, which is a general website that covers a spectrum of diseases and will often give you a little bit of background. And you're right, you do have to educate yourself. When we approach cancer specifically, we try to function as a team and the leader of the team is not the physician, the leader of the team is the patient, and that's an important concept. And there can be a large number of team members, and I think it would be interesting to hear from the people in the studio here about their experience. I think it's always good when you come to a physician's office, particularly for the initial visit or two, to have another set of ears with you, a spouse, a friend, a child, somebody that can hear because you're not hearing, even though you think you are. You're not hearing everything that's being imparted.

CAVANAUGH: Judy, I want to ask you this, too, yes, how important is that kind of communication? Did you feel you had a really good communication with your doctor while you were going through treatment?

TURNER: I absolutely did but I did what Dr. Kosty said because I knew your mind is going in a million directions and you don't necessarily hear and write down everything, so I took a friend with me the first few times to find out exactly what I had, what was going on and what was to be expected.

CAVANAUGH: Did you find that when you left the office after an appointment that you had your questions answered and that you had enough time with the doctor?

TURNER: Yeah, I did, and there was usually a fellow who worked with the doctor there, also, who came in ahead of time and kind of went over everything with me. I can't say enough good about Scripps. I felt so lucky that I was there, and my daughter said she felt very lucky that I was there. I did, I had enough time, I never felt rushed. And I felt that the questions were answered, I just wasn't always absorbing them…

CAVANAUGH: Right.

TURNER: …so I was glad that I had my friend there, to…

CAVANAUGH: And, Lydia, I want to ask you basically the same thing. How – What's your experience with that kind of communication?

HOFFMAN: Well, I agree with Judy. I was working with the doctors and staff at Scripps. They were wonderful. Most every appointment, my husband came with me. He was a second set of ears. I'd make him – not make him, but he would write down – I had a little book that I would take in every time and I'd write down the questions that I had beforehand. Actually, I would think a lot before I went in, and write down the questions a few days before and then show it to him and say, this is what I want to know, and get the answers. And if there was a question afterwards, I would call back and I would talk to the nurse and say, you know what, I don't quite understand this. I wasn't on the internet a lot. I had a lot of faith in the doctors and people that I worked with, so I felt good in that respect.

KOSTY: Well, and I think the other resource that Lydia just mentioned is the oncology nurses, these are largely women but not exclusively, who really spend a lot of time with the patients while they're receiving chemotherapy, those that do, and they really establish a lot of personal relationships. And oftentimes, surprisingly, to me at least, the patients will ask questions of the nurses that they, for whatever reason, don't feel comfortable asking us. But the nurses will often, say, help patients phrase questions to ask their doctor because they have some additional experience. And the other great resource is somebody that's walked that path before you, other patients. And patients certainly network, whether it's in the waiting area or in the chemotherapy room or while you're getting radiation therapy. Don't be afraid to ask somebody that's been there before.

HOFFMAN: I…

CAVANAUGH: Yes.

HOFFMAN: I would say, yeah, it's true. Don't be afraid but also take it with a grain of salt because sometimes there's people – and I know they want to do the best they can but they might want to offer a lot of advice or say, oh, did you do this and do that? And immediately go (gasps) maybe I didn't do something right. So, you know, I guess the underlying thing is that – I think Dr. Kosty said this, that everybody has their own situation. Everybody has their own cancer and it's in its own time. I mean, ten years ago would have been very different from now. But you have to find a way, and it's in you, to deal with it in the best way you can.

CAVANAUGH: And I think that's great advice: Ask a nurse what questions to ask. Fabulous, yes. Kim in Hillcrest is on the line. Good morning, Kim, and welcome to These Days.

KIM (Caller, Hillcrest): Good morning, and thank you for having me. I actually am calling in on behalf of my friend Jennifer. She was recently diagnosed with triple negative breast cancer. And she asked me to call in and pass on this information: The only reason she is doing so well today is because she caught this early. She's only 36 years old and went in for a regular checkup and her UCSD doctor happened to say, you know, it's optional, you can get tested as early as 35, you don't have to wait until you're 40 for your baseline mammogram. And so she decided what the heck, I might as well get it over with. No history of breast cancer in her family. And in doing this, she discovered that she had a very, very tiny tumor but it's one of the least known cancers out there. In the last few years, we've learned a lot more about it. But anyway, she asked me to call in and share that with perhaps some of your listeners out there who are on that borderline age and they're about it or thinking they don't have to worry about it. Why not go ahead and get the baseline mammogram when you're 35 and learn early, become educated and know and have some safety there. And, also, if you happen to end up in a situation like Jennifer, you can rally your troops. She's doing very well and she's going to be walking in the Breast Cancer Walk in November, Team Brady. So we feel really fortunate and privileged that she caught this early, and just wanted to share that message.

CAVANAUGH: Kim, thank you so much for that. We really do appreciate it. I want to follow up with another caller. Connie is on the line in Escondido. Good morning, Connie.

CONNIE (Caller, Escondido): Good morning. I just have an observation, actually, as an oncology nurse. I notice that when patients come in for screenings or when they've come in for screenings, if they actually check the box that says they have a family member that has this certain cancer that they're being screened for, whether or not that is actually true that they do have a family member or not, it seems like they get extra – looked at a little more thoroughly, scrutinize them a little closer, those x-rays get looked at sometimes by more than one radiologist instead of the one. Sometimes they'll order another test. So I just wanted your comment off the air. Thank you.

CAVANAUGH: Well, thank you for that so much. See, ask a nurse. She knows.

KOSTY: Well, that's true, and, well, first of all, Jennifer, good luck to you if you're listening, on your journey. It sounds like your tumor was caught early and I suspect you'll join the ranks of the ten million survivors in the country. As far as being an advocate for yourself, I think when it comes down to the bottom line, we're really all responsible for ourselves and I think it never hurts to be an educated consumer whether that's in healthcare or any other area. And, again, I think one of the great mysteries to me is people will come in and really be reticent to ask even the most basic questions and so most of us have a little prepared spiel that we go through, if you will, with the patients to try to answer some of the most common questions. But don't be shy. It's your life and you're really the person who has the most to gain or lose by not asking those questions.

CAVANAUGH: Let's take another call. Dr. King is in Encinitas, and welcome to These Days, Dr. King.

DR. KING (Caller, Encinitas): Hi. Thank you very much. I was a general surgeon and this call is in answer to the woman who called in and asked what she could do to reduce her chance of getting cancer. You know, most of us doctors give very nonspecific answers such as lead a healthy, active lifestyle and eat a healthy diet but it's really not specific enough or evidence based enough. And I just wanted to mention that the National Cancer Centers of both the U.K. and the U.S., for more than a decade have said that the very best way to reduce many types of cancers is to eat a mostly plant and fruit based diet. Now that changes what we say about eating healthy. And it also has said to be active, which means to do intense exercise, where you at least break a sweat, three to five days a week.

CAVANAUGH: Well, thank you for that, Dr. King. So a very specific form of an idea of being a sort of a plant based vegetarian way but, you know, a lot of people, as we've heard in this short discussion, don't necessarily eat that way.

KOSTY: Well, and I certainly, you know, welcome the opinions of the others here in the studio but I think, as with any diet or lifestyle modification, there's the ideal and then there's the practical and I think to the degree that we can strive for the ideal and make those changes that, as human beings, as individuals, we're capable of making, which is not always meeting the ideal, is good. And I think Dr. King's points are spot on the mark. That said, I think if you occasionally like your In-N-Out burger, that's probably okay. You just don't want to have red meat necessarily twice a day every day like many of us did when we were growing up.

CAVANAUGH: Yes, it's very true.

KOSTY: So I think the lifestyles have changed.

CAVANAUGH: I wonder, you know, we're in our closing minutes here and I just wondered if I could ask the two of you, Judy and Lydia, if you have any closing thoughts for people who find themselves battling cancer. What would you tell someone who finds themselves in that situation?

TURNER: Well, you know, I am such a strong believer in mind and body, and it's easy to say, have a positive attitude and don't let it overwhelm you but I think it's so important. And I have a guru who is Dr. Bernie Siegel and – Do you know him? And he wrote a book called "Love, Medicine and Miracles", I think, and I would recommend they read that and any of his others. It's very important to not hear the negative news all the time. You know, keep it positive.

CAVANAUGH: Keep it upbeat.

TURNER: Yeah. Yeah.

CAVANAUGH: And Lydia?

HOFFMAN: Well, I would say, like Dr. Kosty mentioned the bump in the road, it's just a chapter in your life. It's not the whole story. And if there's any way that you can just trust your inner feeling, who you are, listen to yourself, talk to your body, move towards wellness and take care of yourself. Do things that are good for you. If you have to have that In-N-Out burger, fine. But, you know, basically I know I just changed my diet so just do things that'll be life-giving and things will move on.

CAVANAUGH: Are you going to do anything to celebrate National Cancer Survivors Day?

HOFFMAN: I'm going to speak at the Survivors Day on Sunday at Scripps. That's going to be fun…

CAVANAUGH: Oh, yeah.

HOFFMAN: …so that'll be a celebration in itself. I think just being here is a celebration.

CAVANAUGH: Thank you so much. I really appreciate it. Thank you all. Dr. Michael Kosty, Medical Director of Scripps Cancer Center at Scripps Green Hospital, thank you for being here.

KOSTY: My pleasure.

CAVANAUGH: Judy Turner and Lydia Morales Hoffman, it's been a pleasure to meet you both. Thank you for being here.

TURNER: Thank you for having us.

HOFFMAN: Thank you so much.