conquercancer

A new house in the suburbs. A thriving business. A growing family. It was a charmed life for college sweethearts Robin and Dave Dubin until Dave was diagnosed with colon cancer at age 29.

Cancer is part of Dave’s family history. Will it be part of his family’s future?

The Dubins talk candidly about the decision to explore genetic testing for their sons and the anxiety that comes with having answers.

A new house in the suburbs, a thriving business, a growing family, it was a charmed life for college sweethearts Robin and Dave Dubin until Dave was diagnosed with colon cancer at age 29. Cancer is part of Dave's family history. Will it be part of his family's future? The Dubin's talk candidly about the decision to explore genetic testing for their sons and the anxiety that comes with having answers.

So you tell me a little bit about what it was like when we met.

So we met as college sweethearts at Tulane University. We were 18.

19, I think.

19? All right.

Just somewhere around there.

We'll go with 19. We were studying and I saw you. And I'm, like, that's the girl I'm going to marry. And I, of course, didn't tell you this until what, how many years later?

Until we were about to get married, you told that story to the cantor that was going to marry us. And that's how I found out about it, seven years later.

Sorry. So we got married. And we were running a business together.

Mhm.

We did the traditional move to the suburbs, buy a house, have a first child. And we sold the business. It was a lot of stress.

So when I started having symptoms at age 29 of colon cancer, it was passed off as stress related because of everything that was happening, even though the whole family history of colon cancer was very well-documented.

Your father and your grandfather were a bit older than you were when they had cancer. So we didn't think too much of it. You had to have surgery--

I did.

--and chemo.

So what was it like watching me go from being a strapping 29-year-old still playing soccer to becoming a patient who can't lift his own son?

You do what needs to get done to get through it.

So you became the proverbial mama grizzly?

Mhm. You were a survivor. You did well. You recovered.

And you know, life kind of got back to normal at that point. And we, over the next seven years, had two more kids. And as a cancer survivor, you actually were five years cancer free.

It was roughly 10 years after the first surgery. I go to donate blood. And essentially, my iron count had dropped like a stone.

And they found a bleeding tumor. And surgery was able to remove it. That's when you went for genetic testing and found out that you carry a mutation and they caused increased risks of different types of cancers.

So what did mama grizzly do this time?

Well, first, you started seeing a high risk oncologist.

I did.

So you now get not just annual colonoscopies, but all kinds of other screenings and scans for other body parts. And a year later, they found a tumor in your kidney.

I was certified defective by that point.

So we really were very fortunate that you were being screened. Because it was a very small tumor.

The surgeon was able to go in the same way they went in previously. And a couple hours later, I come out smelling like roses.

Right. Then our kids get to the ages where they need to have genetic testing. I think that was tougher on me than everything we had to deal with with you.

So our oldest son Zach is now 22. When he was 18, he got genetic testing. And he tested positive. So he had to go for his first colonoscopy at 18. And he's been seeing an oncologist and getting MRIs ever since. He has decided to apply to graduate school to get a master's in genetic counseling.

So he took this setback, if you will, and just turned it into something positive.

We have three boys. And Corey, our middle son, who is 18 now, just had his genetic testing done a couple months ago. And he was negative. It was kind of a surreal experience. I was pretty much preparing myself for another positive result. Zach, who is down at school, he called me the second he was done with class. And he was so relieved that his brother tested negative.

So what does the third one think? Well, he knows, obviously, a lot for a 14-year-old, considering he's been with us for this whole thing. So he's grown up with it. And he sometimes will ask us questions out of the blue about this and what it might mean for him. It's a little sobering to have your 14-year-old ask about cancer.

I think in our case, we would rather he actually did ask the question than not.

Yeah. And we're hearing that there may be vaccines. And it hopefully will change our children's future to the point where they don't have those risks anymore, despite having the genetic mutation.

If there was a crystal ball that said this was going to be the journey 30 years ago, I still wouldn't trade.

Me neither. There's no one else I'd rather go through this life journey with than you.

Families like the Dubins put their hope in the future of science. Conquer Cancer donors have funded nearly 1500 research projects to provide new treatments to patients with every type of cancer. Make a gift at Conquer.org/donate to support the next generation of conquerors.

Will I lose my hair? It's a question most people ask when they begin treatment for cancer. When Sue Paxman, a young mother of four, was in treatment decades ago, she was especially bothered when her hair fell out. Claire Paxman tells her brother

Rich about the moment she stood in the bathroom with their late mother, holding the scissors to help her cut her long, curly hair.

Their mother's experience inspired the family's work in scalp cooling technology, a therapy that helps minimize hair loss for patients. They explain how scalp cooling works and recall their beloved mom in this episode of Your Stories.

She was a fun-loving, beautiful, stunning lady. She just carried everything so well, full of life.

Yeah. Always smiling, that's what I remember. Nothing ever got her down, which was pretty amazing to say what the lady went through. Always positive and sort of go-getter attitude. Nothing got in her way.

That's what inspires me every day because with what she did go through, she never, ever showed that. She had different names for all the appliances and different things in the house. A washing machine was a [? waselcrat. ?] The bath was a [? basilcrat. ?] So she'd go and say, go and run to the [? basilcrat, ?] or go and take the clothes out the [? waselcrat. ?]

A crazy lady, really. I think that might be a good description of her. What was the most standout piece of her appearance wise?

Definitely her beautiful, curly hair, which she loved and was a big, big part of her.

And it meant so much for her to try and keep it.

It did. It was terrifying for her, wasn't it, to lose her hair when she was diagnosed with breast cancer.

Do you remember it being diagnosed?

It's one of the things that stands out in my mind a lot.

How old were you?

14.

I was 10.

Yeah, you were 10. It was frightening, wasn't it?

It was frightening because we were very open in terms of potentially knowing she might only have a couple of years to live.

Make no plans-- that's what she was told.

Can you imagine being told that?

Not at 36. Well, any time.

At 36 with an 18-year-old, 14-year-old, and two 10-year-old kids.

It doesn't even bear thinking about. She was diagnosed twice, wasn't she?

Yeah, a recurrence five years later. We thought we were in the clear.

Yeah.

I used to go and sit with her for chemo.

The second time around.

The second time because it was only up the road from college.

Yeah.

Not that I think she enjoyed me being there because it was probably a private moment, and she didn't want to know she was ill.

Yeah. One of the worst things I've ever had to do, but gives me the passion and drive for what we do now when that was stood in the bathroom with orange-handed scissors from the kitchen, cutting that beautiful, beautiful, curly hair off. 14 years old. Yeah, you shouldn't be stood in the bathroom, cutting your mom's hair off because she's having chemotherapy for cancer. I should have been shopping with her or teenage arguing with her.

Or going to the hairdressers with her, definitely not cutting it off.

Go to the hairdressers, yeah. Not cutting it off. But it was the first time she cried, wasn't it, Rich, when she started to lose her hair.

Well, she could hide it before that. Not hide it, but keep that positive attitude. And people didn't have to know she was sick. So that visible sign, isn't it? As soon as you cut it off, it was that clear sign she was going through chemotherapy treatment and, ultimately, that she was dying. Because she didn't like wigs, did she? She'd wear a baseball cap most of the time.

She did. She really suited a baseball cap. As you'd get older, it becomes more real, doesn't it?

It certainly does. Actually talking about it now is making it feel very real to me. But what we do every day makes it a little bit easier I think, knowing that we're helping people.

Absolutely.

We've been now scalp cooling for the last 20 years, which is quite a historic moment, really, so.

20 years, Rich.

A long time has gone by.

Should we talk about scalp cooling, what it is.

Scalp cooling is a treatment that's been around probably since the 1980s. Older forms of scalp cooling included sort of gel caps and ice packs.

Bags of peas. Bags of peas, even.

Bags of peas.

But our device, very simple refrigeration device. It pumps a liquid coolant around a soft silicone cap, which can be single patient use. And what happens is we cool the scalp of the patient for about 30 minutes before the chemotherapy infusion, during the chemotherapy infusion, and, on average, 90 minutes after, depending on the type of chemotherapy that we're using.

So we restrict the amount of blood flow in chemotherapy that gets to the hair follicle, therefore protecting those high follicles from that toxic chemotherapy. What we also see is the drop in metabolic rate. So that metabolic rate means reduced cell division, so ultimately, less targeted effect of the chemotherapy.

And we do know that our hair cells are very similar to cancer cells in terms of rapidly dividing. So that slowdown really aids the protection. So we're seeing less and less hair loss. And it works in about 60% of patients. How many people do you think we've helped, though?

It's definitely in the hundreds of thousands.

Our overall goal is to make sure every single patient around the world, no matter where they are, has access to scalp cooling, whether they've got the income or not. And that's sort of key to everything that we do. And we'll continue to drive that forward.

All because of one incredible, special lady.

She was a special lady, very much so.

Who we miss dearly, don't we, darling?

We do.

Don't you feel proud?

Massively proud.

The fact that we're this family from a town in Yorkshire, it's wonderful. And that experience of cutting my mum's hair off at 14, if I can help any 14-year-old not to have to go through that, I'm sure it's the same for you.

It's far more than just a medical device business. It's because of mum, and it's, you know, that drive and passion to know that it might not be saving lives, but it's making a lot of people's lives a hell of a lot easier.

Yeah, helping them to live with cancer. And that's huge.

Hair loss, although it might not be a number one priority for a physician or a nurse, actually for a patient, it is one of those highest priorities. And we see that all the time. Even some patients will reject chemotherapy because hair loss. That shows how important it is for patients.

Yeah.

Everyone has their own motivations. That recent lady who didn't want to lose her hair because her daughter used to fall asleep twiddling it in her fingers.

We know about people who've got parents with Alzheimer's, dementia, and they don't want them to not recognize them.

There's tens and tens of thousands of individual reasons why people want to keep their hair. And the last one is vanity, so nothing to do with vanity.

People being able to go about their normal lives, have privacy.
Scalp cooling is now becoming an accepted treatment. So it's 3,500 scalp coolers installed around, what, 52 countries, treating new people every single day, which is phenomenal.

And that is Mum that's doing that. Mum's legacy.

Definitely.

The Paxmans also honor their mother's legacy by supporting cancer research. You can donate in honor of someone you have lost to ensure continued improvements for patients everywhere. Learn more at conquer.org.

Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast. And subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories, Conquering Cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

To help manage the stress of treating people with life-threatening diseases, doctors are trained to limit the emotions they invest in patients.

As young oncologists, Dr. Rachna Shroff and Dr. Nina Shah followed professional protocol by the book. They kept patients at an arm’s length, in fear of blurring what they felt was an important line between doctor and friend. That all changed when each of their roles were reversed; the doctors became daughters to a parent with cancer.

In this episode of Your Stories, the friends and colleagues discuss how their experiences on the other side of the bench inspired changes in the relationships they allow themselves to develop with patients.

To help people manage the stress of treating people with life-threatening diseases, doctors are trained to limit the emotions they invest in patients. As young oncologists, Dr. Rachna Shroff and Dr. Nina Shah followed professional protocol by the book. They kept patients at an arm's length in fear of blurring what they felt was an important line between doctor and friend. That all changed when each of their roles were reversed.

 

The doctors became daughters to a patient with cancer. In this episode of Your Stories, the friends and colleagues discuss how their experiences on the other side of the bench inspired changes in the relationships they allow themselves to develop with patients.

 

What were you like as a fresh, young oncologist?

 

I definitely remember being energized and ready to take on the oncology world taking care of pancreatic cancer patients and seeing the human side of oncology and seeing the incredible need to help these patients and try to feel like I was making a lasting impact in the field. What about you?

 

One of the things I think that drew me the most to oncology was that I felt like I could have an impact on someone. When you start out as a young attending-- I call it being youngry-- you're young and hungry-- and you do so many things, but there are only 24 hours in a day.

 

So sometimes when you take care of patients, you're thinking, OK, I have to take care of this patient and then the next patient. And then, I started to really think about getting to the end of everything I was doing-- the next patient visit, the next paper, the end of writing that. I was starting to become a little bit more distant from the patients. Did you ever feel that way?

 

Absolutely. As young attendings, we felt that we needed to keep patients that a little bit of an arm's length and either to just maintain that sanctity of that work-life balance that everybody's trying to find as well as trying to prevent burnout. People talk about how, especially in oncology, the more you let somebody in, the harder and more profound you feel losses, the more prone you are to getting burnt out.

 

I remember thinking, I've got to pace myself here. This is a marathon, this journey of being an oncologist. I wanted to make sure that I was able to have the resilience to take care of all the patients over the course of my career.

 

You and I used to say this to each other. We've got to protect our spaces. If we get too involved in one thing, we won't have enough energy to get involved with the next patient or be a parent at home or take care of our spouses or our families. And I think we did start to put up a little barrier. We were just trying to be efficient. We were just trying to get everything done. It was hard. When do you think this changed for you?

 

When it started on the other side. My mother became the stereotypical, statistic, Asian, non-smoking female who got lung cancer. At that moment, I flipped from being the oncologist to being a daughter and a caregiver. I remember feeling so scared and vulnerable. It was a glimpse, at that moment, when I heard her diagnosis, into what patients hear when that diagnosis comes through.

 

I remember the agony of waiting in a waiting room to see the physician. I remember sitting in the radiology suite with my laptop, refreshing the cat scan images as she was in the scanner, so that I could look at the images and make sure that, after that surgery, that cancer was gone. I remember calling a radiologist on his cell phone to make sure that I got the read of that cat scan. What about you?

 

I think that it all started to change for me when my dad was diagnosed with cancer. I went through these three stages. The first was the, OK, I'm not going to deal with the emotions right now. I'm going to be functional, get him an appointment. And then the second part was the sadness. I saw my mom start to crumble knowing that he had a very bad diagnosis. And all of us started to be confronted with that reality. It's so different, right, when you're the patient's family member versus the physician.

 

The third part of it is, I really started to change as a physician. I appreciated the care. But I started to appreciate what it means to have to go through this, all the steps-- waiting in the waiting room, waiting for a doctor's decision, waiting for a result, waiting to see if the medicine works. Then the appreciation of caregiving-- this was something so new to me. I can't believe I didn't realize it until I saw my mom taking care of my dad for a very extended, intense period of time.

 

They were both around 70. And it's hard to do that. We take care of our kids, but we're much younger. I saw my mom taking him to appointments, rolling him into the car, and waiting to see the doctor. And sometimes I couldn't be with her, and she was just by herself. And she'd have to pack a lunch because, who knew how long the chemo and the blood draw was going to take?

 

I began to appreciate that I see my patients for 15 minutes in that office, and we talk about what's going to happen. And I walk out the door, and they walk out the door. And after that, the real work begins for the caregiver in an intense way that I didn't appreciate before. We see them every couple of weeks, right?

 

But we don't see that endless, infinite time in between. That was so impactful to me. I really began to not only speak to the patient, but the caregiver, and it really started to see it from both of their perspectives. And there's so many people who aren't even lucky enough to have a caregiver. And that, I even felt, even more, as an emptiness.

 

Having gone through this with your mom, how did you start to change, as a doctor?

 

Well, I think, like you said, I became more keenly aware of what that journey really is like for, not just the patient, but for that patient's entire circle. There were small things that-- even just the ways in which I would talk to patients that I changed. My mother got chemotherapy that I give all the time to my patients. And there's a hearing loss risk associated with it.

 

And I used to just kind of downplay it, and I'd say, it's incredibly rare; don't worry about it. And with one dose of that chemotherapy, my mom lost her hearing and got hearing aids. And immediately, from that day forward, there was a different way that I presented that chemotherapy to patients and wanted them to understand, it's a small risk, but it's a real risk. Losing your hearing is a big deal.

 

It's a quality-of-life issue. And when you're dealing with survivorship, the long-term impacts of these toxicities, we literally just fly through on a patient education handout. We have to think of the downstream effects. So I feel like I changed the way I present to those toxicities to patients. I just became more cognizant of the amount of agony that goes into these patients as they're waiting.

 

I used to walk into the patient's room and try to do my full history and physical before I would give them cat scan results. And I would see them looking at me going please, please, just tell me. Is this working, or is this not? And now I have a recognition of what those additional 5 to 10 minutes is to the patients.

 

I try my best to make sure that I give them the results-- the good, the bad, and the ugly-- in as timely of a fashion as I can, even if that means making sure that I'm calling them or following up with them. And I do. I'm willing to let them in a little bit. They have access to me, not just my clinical team. Because sometimes, when it was my mother, I needed to hear it from the doctor. There was something about the comfort of hearing it from that physician's mouth directly.

 

Yeah, after this experience with my dad, I've really begun to open up in a couple of ways. I feel more accessible. I give patients my cell phone number. I used to worry about that because, I would think, they are going to call me, and I'm going to be at my kid's birthday or something. They're so respectful. And I realized that it's a comfort. They know that I'm there for them. And I know that, if something happens, they're going to let me know, and I won't find out two weeks later.

 

I've also begun to understand that people wait for results, and it's agonizing. So I send a message to the patients, and they have it on their phone. And I can say, hey, I saw your bone marrow. It looks good. I'm happy, smiley face. And I sign it with my first name. I used to get so crazy about people calling me by my first name. I was insecure as a young woman physician.

 

And I thought, it just meant they didn't respect me. Now I just-- it means that they like me. It means they feel familiar with me. And I don't mind that anymore. I kind of take pride in it a little bit. I feel more connected to them. And it really does make it an experience for all of us. And it's really more rich.

 

What do you think has changed about how you approach clinical research?

 

Having had a loved one have cancer and have them receive the benefit of progress that has been made through clinical research, it is always at the forefront of my mind in the diseases that I treat. We need to be doing better. And I know that the only way we can be doing better is clinical research. Clinical trials are so incredibly labor-intensive from a patient perspective.

 

When there's a study that involves multiple blood draws, and you have to be at a infusion center for 10 hours, and then come back the next day and be there for six hours, that is a lot for a patient. And traveling, and you're paying for parking, and you have young kids, and you're trying to find childcare for your family so you can be there all day.

 

Yeah, I've appreciated that patients are not just patients. They're humans and that they are intellectual and have curiosity. And more now than ever, they've done their research, and they've looked up things. And they follow people on Twitter and look at your YouTube videos. And this has changed the discussion about clinical trials in my practice because they come to me, and they know what trial they want.

 

When I was a junior attending, I would have been put off by that because I would have felt that they might know something more than I do. We have now, I think, way better discussions than I was capable of having before because I let them into my mind too, not just my heart. I think these are things that we've been able to grow with as we've become more mature and maybe more open. What do you think you would tell a junior attending who's starting as an oncologist?

 

I would emphasize that it is not only OK, but it is important to let your patients in and to share the journey with them. Because what I've come to realize is, what seem like very small things for us to do are so incredibly meaningful to our patients. At the end of the day, these patients know that their lives are in your hands.

 

And it gives them faith and trust on a totally different level. You are initially thinking that letting your patients in makes it harder, it's more emotionally draining, and leads to burnout. I actually think it's the exact opposite. Developing those human interactions and relationships with these people and knowing who matters to them, what they love, what they're living for is actually invigorating.

 

It is exactly what is going to prevent burnout. You should not hold patients at an arm's distance, because there's so much that we can learn from them just as much as they can learn from us.

 

Yeah, if I had to tell myself 10 years ago, some advice, it would be, open your heart. Let people in. Let patients in. It's going to make you see all 360 degrees of this job. It's going to make you a better person, not just a better physician. I would say, with every patient encounter, to look at it through the patient eyes.

 

Imagine what it's like to sit in that chair across from you. Imagine what it's like to leave that clinic area, to check out, and get in a car and drive home. Imagine what it's like to care for someone. And if you'd put yourself in that position, it's going to open your entire career to be something more meaningful than you ever thought possible.

 

[MUSIC PLAYING]

 

Personal experiences shaped Dr. Shroff and Dr. Shah's approach to patients. But they remain engrossed in the science of clinical research to make important treatment decisions. Both doctors advocate for cancer research funding, particularly, for women oncologists. You can learn more about the research Conquer Cancer supports at conquer.org.

 

Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast. And subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories-- Conquering Cancer.

 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

It’s January. Are you among the many people resolved to change your diet in the new year?

Dr. Neil Iyengar and Dr. Nadja Pinnavaia commit to promoting healthy lifestyles every day in their work to prevent cancer and keep it from returning in patients who have already conquered it.

In this episode of Your Stories, they prescribe lifestyle changes influenced by their expertise in disease intervention and share details about their partnership to simplify healthy living for breast cancer survivors.

It's January. Are you among the many people resolve to change your diet in the new year? Dr. Neil Iyengar and Dr. Nadja Pinnavaia commit to promoting healthy lifestyles every day in their work to prevent cancer and keep it from returning in patients who have already conquered it. Dr. Iyengar is a leading oncology researcher studying the links between obesity and breast cancer.

Dr. Pinnavaia left a career in finance to launch a meal and coaching service to transition people into a healthy way of life. In this episode of Your Stories, they prescribe lifestyle changes influenced by their expertise in disease intervention and share details about their partnership to simplify healthy living for breast cancer survivors.

Nadja, could you tell me a little bit about your history with cancer-- I know it's been present in your family-- and how that has colored your upbringing and your current philosophy?

Cancer touches so many of us these days and often creates a new path for us. My mother was diagnosed with breast cancer 30 years ago. And she was triple negative. And she died 20 years ago. And then four years ago, my sister was diagnosed with breast cancer. And she was operated. And I, at that point, went to be tested genetically. And I'm BRCA2, and I had a prophylactic double mastectomy.

Then more recently, my mother-in-law, whom I'm very close to because both my parents have passed away, was diagnosed with stage 3b kidney cancer. And that actually opened up a new world for me of research and learning about what is it that we can do on top of the great clinical strides that we're making with chemotherapy in order to help our chances of surviving cancer.

I'm curious to understand your decision making around the genetic testing and what really prompted you. I understand the family history. But what really made you decide now's the time for me to go get tested?

Cancer today is a makeup of genes and our environment. I didn't realize how much environment impacted our cancer journey. But if I have cancer coming my way, I'd rather know about it and be on the lookout for it and encompass some changes in my life.

I've been impressed with the way that you have taken your experience and really forged a way forward to take control of some of our environmental factors like diet, for example.

Well, when my mother-in-law was diagnosed with kidney cancer, it was really a stimulus to try and do something to be helpful, not just stand around and keep my fingers crossed for the chemotherapy. Up until that point, I didn't have an awareness of how much lifestyle and environment impacts our ability to stave off cancer cell growth when we have cancer and also increase our odds of survivorship.

It was a learning experience for me to understand how much nutrition, exercise, mental health, and sleep are factors that can strengthen our immune system, keep inflammation low, which are two of the major foundations behind our body that's always staving off rogue cancer cell growth until it can't. So when I learned that, it became my mission to try and help people transition their lifestyle where we can increase odds of survivorship.

I'm curious how you really got to the execution phase. You have this wonderful plant-based approach. But you also take a deeper dive into how people view their lifestyle and how you might be able to change behaviors.

First was the awareness of how much lifestyle impacts us. I was learning that sugar is not empty calories. So I now understand that what we eat is really important to our immune system, inflammation, and not just for cancer, but for the whole host of other chronic diseases.

Today's modern diet that's filled with sugar and refined grains and doesn't have a lot of natural fiber in it means that we're generating insulin very quickly because it's quickly broken down to our bloodstream. We're storing it as fat. And the brain is actually telling us to eat more. The conventional advice of eat less, move more when the brain's saying eat more, move less doesn't work.

So we give people nutrient-dense food, the stuff that's going to make them feel great, going to satisfy the brain, going to make them feel full and satiated without the brain saying eat more, eat more. Well, we've done that through education and coaching.

People come out where they feel good. They've lost weight. They're now used to eating in a different way. They're changing those habits, grabbing the bag of nuts as opposed to the cookie in the afternoon. So we're trying to get people to go back to basics.

So with that kind of background, I became very interested in the work that you're doing nutritionally. I'm very excited about the opportunity for us to collaborate and start thinking about how we can incorporate the dietary philosophy that you have operationalized so well with the exercise prescriptions after a cancer diagnosis.

I have the ultimate respect for the work that you've done as a scientist, as an oncologist, very focused on clinical studies, yet with the open mind to understand how we can build in lifestyle factors to complement the clinical work.

Well, thank you. As you point out, lifestyle is such an incredibly important part of prevention and also improving responses to therapy and prevention of resistance and recurrence. The problem is we have a lot of work to do scientifically. We don't have specific personalized recommendations yet to advise people what they should be doing specifically with their diet, what they should be specifically doing with their physical activity patterns and other lifestyle factors.

And I think a lot of that stems from the fact that we're just starting to learn more about the biology behind our metabolisms and the promotion of cancer growth. We're starting now in the oncology world to look at the human as a whole rather than zeroed in on the tumor.

And part of that is really looking at lifestyle and environmental factors and the interplay with prevention and standardized care after a cancer diagnosis. We've been able to take these fields of tumor and host biology as well as nutrition, physical activity, and lifestyle and start to offer interventions to hopefully improve cancer prevention and cancer outcomes.

And so we're taking people who've been diagnosed with breast cancer after their surgery and chemotherapy who are struggling with their weight. We will randomize them to two different types of intervention. One is a intervention where you and I are collaborating to provide the food for the participants. We will also provide the supervised exercise prescription that's individualized for each patient.

And the control will still be an intervention, counseling patients via telephone and some personal visits to help advise them in what we think they should be doing in terms of their diet and their physical activity pattern. I think that our collaboration on this is incredibly important because what you provide is a mechanism for people to operationalize recommendations that are given to them and also even a referral source for caregivers and physicians. So ultimately, I hope that we generate real-world data.

Yeah, absolutely. When you think about this trial, what are the markers that you are most interested in observing?

We've talked a bit about how fat levels tell us more than a person's weight. So we'll be looking at changes in body composition. But we're particularly interested in the biology of the breast. We know that obesity is associated with not only a metabolically-unhealthy breast, but an inflamed and proestrogenic microenvironment that is ripe for the growth of tumors. And so we're very interested in determining whether or not the intervention that we're testing can reverse that process in the breast.

We have adequate data to suggest that healthier eating patterns and exercise can bring down circulating levels of insulin and proinflammatory molecules. If we can show that such an intervention does improve the landscape of the organ and thereby reduce the likelihood of developing cancer, I think we'll be standing in a place where we can make significant clinical impact.

I'm very excited. I've got two little kids. And probably if I dig deep, the reason I started is because I want to do everything I possibly can so that I'm around as long as I can be for my children. I don't want them to experience what I experienced as a child. And so if you can start with the food component, you feel better. And everything else comes beautifully into place.

I think that's so important. One of the great things about this type of intervention is the impact that it has on a person's life as a whole.

There's no downside.

That's right.

As Dr. Pinnavaia reminds us, how we fuel our body matters. Choose the bag of nuts over the bag of cookies today. Dr. Iyengar is proof that fueling the progress of cancer research matters too. His studies to better understand metabolic health in cancer were funded by Conquer Cancer donors. And there's still so much to understand about how to treat cancer but, most importantly, how to stave it off from the start. You can learn more about Dr. Iyengar's research at conquer.org.

Hearing the experiences of others can help people cope with the challenges cancer brings. Help others find these inspiring stories by leaving a review of the podcast. And subscribe today on iTunes or Google Play to hear every new episode. Thanks for listening to Your Stories-- Conquering Cancer.

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. Guests on this podcast express their own opinions, experience, and conclusions. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

When given a 50-50 chance of surviving blood cancer as a teen in the 1970s, Sophia believed she was going to survive. And Sophia was right.

Fast forward to an eerie dream that nudges the then-30 something mom to seek a second opinion after a doctor dismisses her worries when she finds a lump in her breast. She was right again.

Sophia candidly shares her experiences with her daughter, Kalli, who listens to the details of her mother’s diagnoses for the first time.

Do you believe in a woman's intuition? When given a 50/50 chance of surviving blood cancer as a teen in the 1970s, Sophia believed she was going to survive, even when many around her began preparing for the worst. And Sophia was right.

Fast-forward to an eerie dream that nudges the then-30-something mom to seek a second opinion after a doctor dismisses her worries when she finds a lump in her breast. She was right again. Sophia candidly shares her experiences with her daughter Kalli, who listens to the details of her mother's diagnosis for the first time. Kalli speaks first.

We're here to talk about your experience with cancer. I'm really interested in what life was like before your diagnosis, and what made you go to the doctor and see what was going on.

That's a really interesting question. I was in the 10th grade, and I was playing on the softball team. I played center field, and I noticed I was starting to get a little bit more winded than usual. And I started running this low-grade fever and getting chills and night sweats.

Your grandfather, my dad, brought me into the doctor's office, and they did a chest X-ray. And it was the first time I ever saw my dad cry, because I had a huge grapefruit-sized tumor pressing against my heart. They admitted me into the hospital right away. My white blood count apparently was through the roof. And then they confirmed that it was Hodgkin's lymphoma. And I remember my parents celebrating that, because with Hodgkin's lymphoma, I had a 50/50 chance of surviving.

I don't think I've ever heard that part of the story before.

We would go to New York twice a month. I'd get my chemo, and then I'd be sick all weekend. And I basically puked my brains out all weekend. But youth is wonderful. On Monday, I'd be fine and went back to school.

How long were you in chemo? And how long until your doctor finally told you you were cancer free?

I was in a clinical trial at Sloan Kettering. It went on for two years. They didn't paint a rosy picture at first. But they were so impressed by that tumor's reaction, that they upped my odds of survival. It went from 50% to 80% or 90%. So that gave me a lot of confidence.

My last treatment was a week before I graduated high school.

Aw.

So as you can imagine, it was a huge celebration. Oh, my goodness. We went down to the river, and we just partied--

--and then not just once.

Not just once-- I love it.

So I came out of this with the feeling that I'm going to be one of those people who's going to survive this. Did I think about dying? Heck, yeah. Frankly, I think I thought more about losing my hair, but I was a teenager. [CHUCKLES] I don't know.

Were you ever concerned that you would get cancer again?

The short answer is no. Sloan Kettering released me from their care after five years. At the time, because I was one of the first cohort to be cured, they didn't really know about long-term effects. It was only later that they'd started discovering the radiation we got can lead to a second cancer.

So you met my dad. You dated. How did he react to finding out that you were a cancer survivor?

He had one of the best reactions, and that's probably when I knew I was going to marry him.

He was like, oh, OK, so you had cancer. Well, let me tell you about me. It never was an issue. And I think, if anything, for him it was, wow, she's a really strong person. So for him, I think it ended up being a point of attraction.

That's wonderful. So you guys got married, you had us, and my sister and I, Kathleen, were about a year and a half when you got your breast cancer diagnosis. What led to you going to the doctor?

I remember feeling a lump in my breast. Being proactive, I said, let me call my gynecologist. Her response was, oh, you're not old enough. Just let me know if it's still there in six months. And I remember going to sleep that night, and I had a dream, Kal.

And in the dream, I was in this room, and I was looking down at you and your sister and your father. I could see you all, I could hear you all, but you couldn't see me. And it was the worst feeling in my life. And I realized that I had died.

And I woke up from that dream, and I said to your dad, I'm going to the doctor. So I did. And the radiologist puts the film up, and he says, this does not look good. You've got to get this taken care of. And long story short, they took the tumor out. And I'll never forget the oncologist. I was sitting down with him, and I said, I don't know if I can go through two years of chemo. Do I really need the chemo? And he looked at me. He says, two years? Sophia, we only have to do about six months. And then I burst out laughing. I was so happy.

How different was it compared to your first time going through cancer treatment?

So now I'm a 30-something. I have these twin daughters, a year and a half old, and my husband, and a full-time job. I'm like, holy cow, can I do this again? Of course I have to. I have to be there for my family.

The whole landscape had changed in terms of support. People were bringing us meals. And I remember walking into Duke and seeing this sign, "Duke Cancer Patient Support Program," and saying, what is that? And then figuring out those were social workers and counselors that were there to help cancer patients. I mean, we didn't have any of that back in the '70s.

How did your second cancer really morph your life?

I started volunteering through the Cancer Patient Support Program. And the director said to me, have you ever thought of going into social work? So I applied and was accepted at UNC Chapel Hill. I assumed I was going to leave it at that, and then become a social work clinician.

And something happened. I fell in love with research and decided, you know what, I'm going to do this for a living, because I can help people. And I had that one degree of separation, so I wasn't in the cancer world every day. And for me, that was a good fit. I really enjoy my research.

How do you think your life would have been if you hadn't been diagnosed with cancer?

What I describe sounds like I had a lot of challenges, and it was really tough to go through. But I wouldn't trade where I am right now with anybody else for anything. I'm completely happy. And whether it was a cancer diagnosis or an accident or whatever put me here, I'm just really grateful. I recognize the gift that cancer brought me and made me who I am.

As a daughter of a two-time cancer survivor, it's certainly been so inspiring. That's the major reason why I myself am in the research field now. I'm in awe of you and just so proud. Thank you for sharing this with me.

Thank you for that. You're beautiful.

You're beautiful too.

Conquer Cancer donors have supported nearly 1,500 research projects like the clinical trial that saved Sophia's life. Now in her 50s, Sophia dedicates her career to helping patients. You can help patients by donating to Conquer Cancer. Make a gift today at conquer.org/donate.

Stuart Spigel wanted to be a forest ranger. His mother…well, she had other plans.

Dr. Stuart Spigel would become Nashville’s first oncologist. Though not the rustic wilderness he’d dreamed of exploring, cancer in the 1970’s was an uncharted field.

In a conversation with son and fellow oncologist, David Spigel, you’ll hear candid insight into the ever-changing landscape of cancer care and how becoming a patient himself forever changed Stuart’s relationship with those he treated.

Stuart Spigel wanted to be a forest ranger. His mother, well, she had other plans. Dr. Stuart Spigel would become Nashville's first oncologist. Though not the rustic wilderness he'd dreamed of exploring, cancer in the 1970s was an uncharted field.

In a conversation with son and fellow oncologist David Spigel, you'll hear candid insight into the ever-changing landscape of cancer care, and how becoming a patient himself forever changed Stuart's relationship with those he treated.

In my senior year of high school, my mother had me tested in New York City, and I did three days of testing.

To see what you would be in life?

Yes. I wanted to be a forest ranger, the only Jewish forest ranger.

But at the end of the three days, there was a counseling session. And the counselor said, ma'am, your son is cut out to be a social worker or a forest ranger. And my mother grabbed my wrist and said, my son is going to be a doctor. And that's why I became a doctor, to be honest with you.

I knew I wanted internal medicine. And with each of the rotations, I was disappointed. Then I rotated in oncology. Wow, oncology. I had two exciting teachers, and they were doing exciting things. It had just been shown that Hodgkin's disease could be treated successfully and perhaps cured with chemotherapy. And that was really exciting for me.

It's interesting, because I'm an oncologist, and to me, right now feels like the most exciting time in the history of medicine, not just oncology, with the things we can do, the discoveries being made, the pace of development. And I look back to even just 20 years ago, and I think, boy, there really wasn't a lot to do there. And so you're talking about 1969, 1970, you felt like then you were doing a lot of great things or things were happening, and it was exciting as well.

In 1969, we began to treat women with widespread breast cancer, and we sought to publish our experience with 25 such patients. And we submitted that article to the Journal of the American Medical Association, the New England Journal of Medicine, the Annals of Internal Medicine.

Did you author that? You were the first author?

Yes, I was the lead author, and it was rejected by everyone. The editorial comment from the Journal of the American Medical Association was, our readership is not interested in cancer. We don't believe cancer is a treatable disease. Now you pick up any medical journal, and at least 50% is devoted to oncology. It's incredible.

So I want to fast-forward to Nashville.

Believe it or not, there was no medical oncology at the time in Nashville, and I became the first trained medical oncologist in Nashville, Tennessee.

And I remember as a child, your day didn't stop. You were the only one going to the hospital. I just don't know how you did it.

I don't either. I wasn't getting home until late. And so finally, in 1979, I started my own practice.

So that same practice today is now 89 physicians, one of the largest in the United States. That was the group you started.

Yes.

That feel weird?

Yes.

Did you enjoy it? Or the joy--

No.

Oh, you didn't.

It was joyless. I mean, I worked from dawn to late at night, and my marriage dissolved. And in large part, it was because of my work.

When did things change for you, where being a doctor became gratifying?

When I hired help, and we began to have the time to enjoy life a little bit.

It is gratifying for me now, walking in the same hall as you walked in, doing the same things. And it's rare for me to encounter a patient who doesn't confuse me with you because "You took care of my grandmother," or "You took care of my mailman's mother." And I have to tell them, no, that's the other Dr. Spigel.

Noah, my son, who's 13 right now, I brought him to the hospital, and I had to run back to see a patient. And I left him at the nurses' station on a stool. Then I came back, and the clerk there had been there when you were working. And she said, David, that was you on that stool with me all those years ago. And it's just kind of interesting because I do remember I used to round with you probably at Noah's age. Those were memorable moments for me.

I did want to shift a little bit because something happened in your life when I was an intern at Indiana. You were 53 at the time, and you had been diagnosed with prostate cancer. I thought maybe I'd ask you about that time in your life and how it's been since.

I really have never paid much attention to my own health. But as I reached that age, my primary care doctor began to do the PSA, the Prostate-Specific Antigen. And it came back 7. The norms are 4 or less.

I had a needle biopsy of the prostate, and that came back as malignant. And within, oh, 10 days, I underwent surgery, and my PSA fell to undetectable levels, and all was well for a period of time. And then in 2003, my PSA became detectable and began to climb. And long story short, on the premise that a recurrence could take place in the prostate bed, I had radiation therapy.

That must have been a difficult time to pause and figure out, OK, I've got to worry about me for the moment.

I'd only had one day off because of sickness in my life, up to that point. So yes, that was a big deal.

How was it to walk into a room with a patient, even if they didn't have prostate cancer, but they had any cancer, did anything change for you?

It did. It made me more empathic. And sometimes it would actually help the patient, because I could say, I have cancer too. And I'm not asking for your sympathy. I just wanted you to know that I've walked where you've walked, and I've had the same anxieties you've had and still have. And that, I think, made me a better doctor.

So you are 75, and yet you just retired.

Yeah, I retired.

And so you're in Maine. You live on an island, off an island, where you, I think, have always wanted to be, in a great beautiful place that's outdoors without a lot of heat.

Yeah, I could be a forest ranger at last.

David follows in his dad's footsteps, blazing trails in oncology to discover new treatments. The Spigel family donates to Conquer Cancer to bring those new treatments to patients sooner. Join them and be part of the most exciting time in medicine by making a gift at conquer.org/donate.

“Just let me die.”

That’s what Linda said after receiving her leukemia diagnosis.

Not all patients believe they can conquer cancer. 

Linda and her daughter, Marissa, relive the first day in the hospital and the year of medical house arrest that was part of Linda’s life-saving treatment.

Just let me die. That's what Linda said after receiving her leukemia diagnosis. Not all patients believe they can conquer cancer. Linda and her daughter Marissa relived the first day in the hospital and the year of medical house arrest that was part of Linda's life saving treatment.

 

Let's start back at the beginning. How did you learn that you had leukemia?

 

Well, I had just retired from teaching. And I started feeling really very weak. I also wasn't eating anything, couldn't eat. I went to see my doctor the next day. She did bloodwork. Called later and said, you need to get to the hospital right away. So--

 

Off to the hospital.

 

--off to the hospital. And they did more tests. And I remember the doctor coming in and saying I had acute myeloid leukemia.

 

And I just pulled the sheet over my head. And I didn't want to hear anything else. I didn't want to hear any of it.

 

I don't know if I was in shock. I wasn't in disbelief. Because I all along thought I knew this was going to happen to me.

 

What got you past that initial moment of not wanting to hear anything? I just kind of went with it.

 

Well, there's no time to really think.

 

Right. I think I was thinking whatever happens happens. And I know several times I said I just want to die. I remember looking at you and mouthing, I just want to die. And you just shaking your head, saying no.

 

No.

 

No.

 

No. That was not an option. We knew you. And we know how you deal with medical problems or issues. And for us, it was we're going to fight this and we're going to do everything that we can.

 

So you can sit there and you can feel that way. But we're going to be the people who are pushing this forward and meeting with the doctors and asking the questions and just sort of making sure we're doing as much as we can. But it was important for you to have that moment, though. Because you know, we're not the ones who are being told that we have cancer, you are. And so I think we wanted to give you that space to sort of go through that acceptance.

 

Yeah, I guess at some point, obviously, I did accept it. But I got to the point with just tell me what I have to do and I'll do it.

 

And you fought the whole way. But you did what you needed to do. And really, you were the one who got yourself through the next round of chemo, the next round of radiation. And oh, then, there's this thing that's a bone marrow transplant.

 

Right. And you were my donor. So--

 

I won.

 

You won. Did you have any fears about that whole thing?

 

I didn't really. I guess there was a little apprehension about just sort of being put under. But I think my reaction was just sort of great, when do we do this, how soon do we do this, how fast do we do this. There was never a question that this was the right thing to do.

 

I mean, it just felt like I took a nap for a morning. I go under they take a liter of bone marrow. I just generate it. So there's no real impact to me. I was bruised and sore. And then they just process it, bring it to you.

 

I remember the doctor coming in with your bone marrow. And the chaplain was there and said a prayer over it.

 

And then it just goes in your body. It knows where to go. And then it just starts doing what it needs to do.

 

That was an emotional moment thinking that you were saving my life. So anyway, the day came when I could leave. And when I got home, it was still a year you can't go to a restaurant--

 

Medical house arrest.

 

Right. You can't go to the movies you can't go to any public places at all.

 

Can't really see people.

 

And so I said, oh, but I can garden. No. You can't even do that. So I was, OK, now what am I going to do? I got into my photography. I got into art. I did the sketchbook. I finally hung all those family portraits.

 

I was going to say, years of my life I've heard about portraits up the stairwell. And now you finally did it.

 

So it was weekly visits to the hospital. And then every two weeks, and now it's one month. I've done very well so far.

 

So you had said that you always felt that something would happen. You would get leukemia. You would get cancer. Do you still carry that, where you feel like something's going to happen? Or do you feel like you've been able to kind of get past that because you experienced it and you know what it is and you know you can beat it?

 

I don't feel as anxious as I did. Because I know that somehow you get through these things-- somehow. I didn't know that I was as strong as I was. So I don't think about the future. I can't go beyond, let's say, a month.

 

It's this is what I'm going to do today. I'm going to make sure I enjoy this day and take advantage of this day. I can't think about a year or two from now. I can't. People say living in the now. But it's true. It's not a bad way to live--

 

No.

 

--if you can do it.

 

Linda is now in remission. And her family donates to Conquer Cancer to ensure other patients face treatment with the same hope Linda was given. A gift to Conquer Cancer provides patients treatment options and the encouragement needed to embrace their conqueror within. Inspire a conqueror. Make a gift today by visiting Conquer.org/donate.

On a Saturday morning, a wife wakes to telling signs that her husband is not well.

Before Sunday comes, a devastating diagnosis:  A young father has a one percent chance of surviving.

On a Saturday morning, a wife wakes to telling signs that her husband is not well. Before Sunday comes, a devastating diagnosis-- a young father has a 1% chance of surviving. The search is on for a life-extending treatment. Erin, who lost her husband Mike, and Erin's sister, Dana, share the deeply emotional experiences and daunting medical logistics of loving someone through a terminal illness. We hear from Erin first.

Mike was brilliant. Had a PhD in genetics. He was 44 years old at the time he was diagnosed with stage four pancreatic cancer and given three to five months to live. He was a great dad and a great husband. He was quiet, but he was tough and stubborn as heck. And he was a big, strong, and somewhat intimidating guy.

Do you remember the day that you found out that Mike had pancreatic cancer?

That was a day that was a paradigm shift for me and I guess really for us as an entire family. We woke up in the morning. It was a Saturday. I woke up, and I looked over at him. And he was yellow. He was jaundiced. I was startled, and I woke him up. And he looked at me. And he said, what are you doing? And I said, you're jaundiced. Your eyes are yellow. Your skin is yellow.

So literally like overnight.

Overnight. So they did a CT scan, and then they asked us to come in. And they sat us down across the desk from a doctor and said, we hate to tell you this, but you have a mass in your pancreas and lesions on your liver and in your lungs.

Wow.

And Mike right away said, what's it look like for me? Are things any better now for pancreatic cancer than they were years ago? And the doctor said no. He said, you have like a 1/2 to 1% chance of recovering from this disease at stage 4. So basically that was it.

So how did Mike's cancer change your life?

Before Mike was diagnosed, I was a very, very happy stay-at-home mom and wife. And I loved my life. And I got suddenly thrown into the caregiver position for him and for my children. I thought that would be when we got old. I had no idea it would be at 36. So it was very difficult. How did you feel when I told you about Mike's diagnosis?

We were in California. And I was with Dave and Mom and Dad. And you said, Mike has pancreatic cancer. So it was a very surreal moment for me because my first thought was that can't be right. Like someone's made a mistake. I didn't know a lot about cancer. At that point in our lives, we really hadn't been exposed. Nobody in our family had cancer until that point in time. That moment changed my life. I knew that I had to help my family. You're my little sister.

Then you asked me to help, to see what was out there in relation to clinical trials because Mike was not inclined to just do standard of care. That gave me a lot of purpose and a lot of focus because that allowed me to do something. So I spent the next five weeks combing through the internet about clinical trials and whatever opportunities that might be out there for Mike.

I'd read two sentences of a protocol and have to look 16 words up because I had no clue what I was reading. I learned a lot through that process. And I did find three or four trials that Mike could qualify for. And fortunately, he was accepted into a trial.

All the pieces kind of fit into place for us. And we felt very fortunate at the time. And then with Mike's response to the trial, he really regained his quality of life.

He did. He felt great on the clinical trial, didn't make him sick. So we had some really great time. He lived 19 months, which may not sound like a lot or enough. But it made the difference between Caitlin, who was 4, remembering him or not. We were able to go on some vacations. He was able to coach her T-ball team and take the boys camping, which was a really big deal to them. So we had that time. And it was really good time for us.

So Erin, as Mike's caregiver, what advice would you give to other people?

The biggest thing throughout the journey that I learned that I didn't know prior was that hope really is everything. And without it we had nothing. So being able to continue to have hope helped us to continue to fight. That knowledge is power. And patients should have that knowledge to be able to determine their own path. And as a caregiver, I learned that I had to be accepting of Mike's decisions for himself for his own path.

What surprised you about that journey? Mike got cards from not just throughout the country but from people he knew throughout the world. Every night, we'd go to the mailbox together. And we'd get his cards. And he would come back. And he would sit in his rocking chair and read those cards and just cry every night. And that was surprising to me because Mike-- he was a tough guy. He didn't cry. But that became his practice. And it was cathartic for him.

One of the things that stands out that surprised me was that his passing was very peaceful. It was very difficult getting to that point. But I can remember laying my head on his chest and listening to his last heartbeat.

And I whispered to him at that time. I said, it's OK. We're going to be fine. And his heart stopped beating. I think about that moment so often. And it sounds strange. But somewhere in my heart, that has become a beautiful moment for me.

A clinical trial gave Erin's family the gift of time. Turning heartache into hope, Erin and Dana made a gift to support the Conquer Cancer Foundation. Conquer Cancer donors have supported nearly 1,500 research projects to better treat patients like Mike. Join Erin and Dana. Make a gift to Conquer Cancer, and give the gift of time visit. Visit conquer.org/donate.