The Dr. Sam and Dr. Sam Siegel Method: Married Cancer Survivors Balancing Family, Medicine, Living Fully, and Innovation with an Onco-Generalist Practice

They keep it real, relatable, and full of passion: True Grit

 In this heartfelt and candid episode of Everything Cancer, we sit down with Dr. Sam Siegel, a pediatrician, and Dr. Sam Siegel, an onco-generalist doing the heavy lift of starting a survivorship practice. Both doctors are not only healthcare providers but also cancer survivors who each experienced tough treatments and parents to three busy kids. 

Sam and Sam candidly discuss their personal cancer journeys and the complexities of balancing family life with their professional and personal health challenges. Mortality is a topic that is not off the table in their household out of hard-earned necessity.

They discuss the importance of self-advocacy—a topic they frequently address in public speaking, emphasizing the crucial nature of asking questions and not being afraid to seek second opinions.

Dr. Sam Siegel talks about her pioneering onco-generalist survivorship program at Kaiser, which aims to integrate supportive care from the time of diagnosis, focusing on the quality of life, especially for those living with metastatic cancer. They both stress the need for comprehensive, multidisciplinary approaches that go beyond merely extending life to truly enhancing it. 

We discuss the importance of being vital at all stages of one’s journey.

Their beloved dog, Darla, occasionally weighs in on the conversation.

Tune in to hear how the Siegels navigate the ups and downs of cancer, parenting, and building a better future for survivors. Their story is a powerful testament to resilience and the relentless pursuit of living fully, no matter the circumstances.

 Dr. Samantha Siegel's LinkedIn linkedin.com/in/samantha-siegel-md-240341291

What About Primary Care by Dr. Samantha Siegel and Dr. Rebecca Eary in the September issue of Elephants and Tea

Transcript

Everything Cancer (00:00)
Hello everybody and welcome to the Everything Cancer podcast. We have double trouble here today with Dr. and Dr. Sam Siegel and Sam Siegel. Dr. Sam Siegel on the left of your screen is a pediatrician and Dr. Sam Siegel with the pink headband is an onco-generallist and she is running a survivorship clinic with Kaiser Permanente.

and they are both also survivors. So they bring both experiences of being a provider and a survivor to the table. They both have supported each other through their diagnosis, very tough treatments and survivorship, and they have a busy family of children and they have that experience as well of dealing with a family with they both work and they both have

bit on the survivorship continuum with dealing with their three girls. So they have a lot to talk about with all of you in our audience that you can relate to. And they talk extensively in public speaking about self advocacy because they have a lot of lessons learned through their experiences that I think a lot of you will be able to relate to and our providers who listen as well. So Sam and Sam, thank you for being here.

Sams (01:26)
Thanks for having us. Yes, thank you. I have to correct you though, because I feel like if our kids listen to this podcast, they'll be they'll be bummed if we didn't. We have two boys and a girl. No, it's OK.

Everything Cancer (01:35)
I'm so sorry. Okay, two boys and a girl. Well, there, now it's corrected. So what are their names? If you don't mind sharing their first names, and if you don't want to, I get

Sams (01:44)
No, that's fine. We have Murray is our oldest and then Gilad is our middle and he goes by Goose actually. I think there are many people who don't know his real name. It's been his baseball name forever. And then Lily is our youngest. And our house is very quiet right now because they're actually at Camp Kesem, which is for people who don't know, it's an amazing.

Everything Cancer (01:59)
Aww, okay.

Wow.

Sams (02:10)
a five day sleep away camp for kids whose kind of parents or caregivers have been impacted by cancer. So this is our third year that our boys are going and it's our first year for Lily to go and she's so little, she just bit. Yeah, she turned six, but she's going with her big brothers and she's a pretty strong kid. I think she'll have a good time. Yeah.

Everything Cancer (02:33)
she's gotta be strong with having two older brothers.

Sams (02:36)
yeah, exactly. Exactly. But yes, the Camp Kessim is really great for people out there. It's totally free for any kids that basically had really close, a close person in their life that had had cancer. It's a wonderful camp. It's I think it has chapters all over the country. Yeah, it's run by college volunteers, college students volunteering. And our two boys, they've been there. This is going to be the third year and the

Everything Cancer (03:01)
Wow.

Sams (03:04)
The two previous summers, they just had wonderful experiences. I can't wait to go back the next summer.

Everything Cancer (03:09)
That says something when they tell you they can't wait to go back and I'm sure for them it takes a mantle of weight off their shoulders when they can be around other kids and just talk about their experiences and how they feel.

Sams (03:25)
Yeah, I think it's, hope that what we're modeling for them is that there's community in this, you know, even though it can be very hard and sad sometimes, and we wouldn't have wished this experience on them for anything, that there's also a lot of beauty and resilience and community in this experience. And I think they see that and they feel that now. In fact, my daughter, we were in the car the other day and my daughter heard

I was listening to a lecture from my integrative medicine fellowship and they said the word cancer and she went cancer. Like she cheered because in our house, it's something that we've both dealt with and do a lot of advocacy and like it all fired up about cancer. And so that was really interesting even to just hear her response to the word cancer. It wasn't like, cancer and that's really sad and scary. It was like cancer, yeah. Right?

Everything Cancer (03:59)
Hahaha

That is an interesting response, but she sees the way you are carrying forth advocacy in cancer. So she sees the cheer part of it, of you're uplifting others. And yeah.

Sams (04:36)
I think she has. And we, and we, mean, I guess, fortunately or unfortunately had the experience of because of my illness, having to learn kind of the hard way how to, how to properly bring along a child through the cancer or the chronic illness experience. And we didn't do it as well as we could have for particularly our oldest son who's now 12.

And so by the time Samantha got sick, which was unbelievable, we had already had that experience. We'd already made mistakes. had already learned kind of how to do it better. then by the time she, when Samantha first got sick, she was what? was three? She was three. So we had a better, we were just much better equipped at that point, because it is tough. is certainly, there are definitely like, you know, there are books about

How to get through cancer yourself there are you know that you get a lot of advice about how to you Keep your wellness and so on so forth, but I don't there's no there's like there's no literature out there for how to shepherd your child through cancer You know, there's a lot of in the pediatric world. There is a ton of Child life specialists. There's a ton of experts for how to shepherd a child through cancer But how to shepherd a child of somebody of one of parents that has cancer that's something that really I think is an area that we could definitely all approve on and that hopefully

That's one of the things that we try to speak on a lot because there's nothing, there's not a lot out there. Yeah. think, I think there's more and more. And we were talking about some amazing advocates earlier who have kids like Amanda Frarro and she's her son has written a book. so there's, yeah, I think there's more and more people that are coming forward about this experience. But yeah, when it came to our older kids, I mean, we, botched that pretty hard. Like we,

We thought we were protecting them. In fact, we tell this story sometimes about our oldest son who actually one time when Sam was in the hospital leading up to his liver transplant, he was very sick in the hospital. we just, thought we were protecting the kids by saying like, daddy's away on a trip. You know, we just said that he's away. And they were pretty young. They were about three and four or maybe four and five.

And then we just kind of left it at that. But I'm sure that he heard like my quiet sobbing at night or the hushed conversations or other family members like, is everything okay? I'm sure he felt it and we didn't address it because what had been modeled for us in our earlier lives was just that the parents would take care of it or the care group would take care of it. And...

the kids could just be kids. And so we thought we were doing right by them by doing that. And... particularly, I mean, particularly was, I think it was probably me because it was, think she deferred to how I wanted to deal with the kids because it was my illness at that point. And my model was my father. When I was, I think about nine or 10 years old, my mother had breast cancer. And this was back in, you know, 1989.

or something like that. And the breast cancer treatment at that point was 1989. She had aggressive treatment and we have all the BRCA stuff. And so she had no mastectomy. She had really heavy chemo, really heavy radiation. And my dad's approach at that point, which I can't fault him on, he was just like, let's try to just get through this with the kids being exposed a little bit to mom's illness, which I think is how a lot of people feel about it. And also it was, he was also

very confident, know, he was, he's he's a doctor. He's a very smart guy. He's very like, what I was like a crisis. He's the guy you want in there. And so, we, there was like a blind trust. remember I had as a nine or 10 year old that my dad would just take care of it. I didn't have to know any details. So I thought that maybe that was the right approach for our own kids. And it wasn't anyway, that's kind of where that's my back. So this was breast cancer in 1989.

And then fast forward to the 2000, kind of 2010s, then I got sick and then you can go ahead and continue with Murray. Yeah. we thought we were... Do you want to get the dog? So yeah, we thought we were protecting Murray. And so we didn't mention anything. And then about five or six months later, after one of these big hospitalizations, Murray started losing his hair.

and like a lot, I mean, he was like coming out in clumps and we took him to the doctor and we were terrified that something was wrong medically. I mean, I say that if I was like waiting for the next medical lightning bolt to strike, you know? And so we did all this blood work and all this testing and it turned out that there wasn't anything medical that she could find. then she said, our pediatrician said, is there any like major stressors going on in your house? And we said,

Well, yeah, you know, he's leading up to transplant. And we told her everything that was going on that he had been, you know, on the ventilator and GI bleed and that there was really serious things happening. And she said, my gosh, you know, that's it right there. And, and that it was, it fit about the timeframe of this really stressful event. then however many months later that that's what was happening. He was having a stress reaction. And then she said, there's no way

protect your kids from this, you have to talk to them. And she connected us with child life specialists who then taught us how to talk to them. And they had special little kind of toys to teach the kids about IV tubing and taught us about having conversations with kids. Like you let them guide the conversation, like you give them a little piece of information, and then they might ask follow up questions, or they might not, and they might run away and play because that's as much as they can take at that point.

And so then we sort of learned the art of shepherding a family through serious illness and And we got better at it so that when the time came when I got sick It was still extremely hard and we there were bumps along the way But we were much better at it then then through his illness and I think our kids were just you had a really honest understanding and it was still a little bit isolating like compared to

friends and other houses with kids our age, like death is a word in our house. You know, we talk about death and we talk about just mortality. We talk about, yeah, just a lot of conversations that maybe families haven't had to deal with till their kids are a little bit older. especially once I got sick and then when I went in for my bone marrow transplant, I think we just felt that it was really important to be as honest as possible with the kids.

And so, yeah. we just, I mean, basically we learned that, I mean, you have to say something and you have to, and it's hard to, I had a little bit extra as a pediatrician, you know, a little bit extra insight into developmentally the different stages that they were at when we were talking with them. So you try to basically, you know, you meet a kid where they're at developmentally and you basically, you have to expose that something's going on. You have to bring them up to the open.

and then once you do that, like Samantha said, you basically introduced the subject and then you kind of, then things will happen. Like you may think that they don't have any idea what's going on. Can you get the dog? You may think that you may think that, you know, that, that, that, that they're not kind of aware what's going on. And then all of sudden, after a month of not talking about the last, the last question, you know, like there's something that they're, there's something that they've been thinking about. and so, but anyway, yeah.

Everything Cancer (12:27)
Yes.

Is your dog okay? Okay. She sounded like she was, she wants to be part of the interview.

Sams (12:46)
She's fine. She just barks at anybody.

She does. She wants to be part of the whole, she wants to be part of everything.

Everything Cancer (12:56)
If she wants to jump up and be part of the conversation, that's okay.

Sams (12:58)
She She should be part, I gotta tell you because I think she spent, when Samantha was sick, she was with her every day. She didn't leave her side for, I don't know, for like two and a half years. mean, Samantha would go upstairs, lie in bed, she'd lie with her. She'd come downstairs, she'd come with her. mean, she was like trailing her about the house through the entire illness. In fact, she's Darla is her name and she's very sweet.

Everything Cancer (13:21)
What was, what is your dog's name?

Aww.

Sams (13:26)
She smelled my relapse too. So yeah, when I first started realizing that I was relapsing, her behavior toward me had changed. And I told my dog, I think she thought I was, this is a crazy dog lady. But no, could set, because we spent so much time together, I could clearly tell her change in behavior towards me.

that she was started smelling my mouth a lot and was almost like had gone from being with me to then she was guarding me. So, I mean, when you spend all day, every day with an animal, they don't have to be using words for you to pick up on the subtleties of their behavior and how they're treating you. And so, yeah, it was really, it's pretty crazy.

Everything Cancer (14:15)
There's a lot of studies about that now, using dogs to sense that. So how's Murray doing now?

Sams (14:17)
Yeah, yeah, yeah, yeah.

Murray's great. mean, Murray is like, he's a special kid. I mean, obviously I think parents think that about their kids all the time, but he's really sensitive. He's really insightful. And he's also been kind of been part of the you know, the survivorship, you know, cancer, know, uncle PCP, uncle generalist discussion. Like he's been hearing us talking about it for years now.

And so he knows exactly what survivorship is. He knows what mom is doing. He recognizes the importance of her work and he's, yeah, he's totally out with it. Yeah, I mean, they all are. And I think that's where Lily's cancer came from because they all witnessed, you know, getting diagnosed, me feeling rocked by this experience. And then especially the relapse kind

letting go of all my former ideas about myself, what my career would be, my identity, and then like reinventing all that and then deciding, hey, I think I want to do survivorship. But the time from having that realization of I want to do survivorship, what does that mean? What do I think survivorship is? And then how I'm trying to deliver it now and like grow a program within Kaiser that hopefully will scale up and become like a large scale thing. That process

you know, years, a couple years, lot of emails, a lot of ups and downs, as I was kind of navigating the business case and how do you get buy in organizationally from people about the work and, and growing a pilot and things like that. And so, yeah, they saw, and I even had to move kind of service areas within my organization to get the pilot going. So they saw all of that. And I think that that again, was

teaching them about resilience without having to say, is resilience that we're practicing, you know? They learned about overcoming hard things and being really persistent and not giving up even when the answer is no, no, no, no, that eventually down the road it might become a yes. So, yeah.

Everything Cancer (16:42)
Wow, I wonder if they're gonna practice that with you as teenagers.

Sams (16:48)
Probably. Very persistent. man. Well, I always, I would say, especially for Lily, she is so fierce. Like it is, wow. I mean, ever since she's been really little and I just, I just know that my job as a parent is to keep the guardrails up and like prevent bodily harm. And she just kind of knows what she wants. And I'm, my job is to keep her safe and like guide her in the right direction. But she's just already from teeny tiny thing.

just this big person.

Everything Cancer (17:18)
Wow. So tell us about this program, Sam, if you can, that you're, if it's top secret, I get it, but that you're growing, that you're growing at Kaiser. It sounds amazing.

Sams (17:28)
yes.

Yeah, no, it's not top secret. In fact, I love engaging. I still do a ton of blood cancer support groups, just cancer support in general, advocacy, organization things and outreach, because I think that that really informs the model that we're building. Like, I think that I have to do those things. I consider that almost like market research, you know? Yeah, totally. Every conversation that I have, whether it's with a patient, their care partner,

Everything Cancer (17:53)
I get that. Trust me, I get that.

Sams (18:00)
other providers, about how they're running their clinics in other parts of the country or the world. It's like, just, have this notebook that's this ongoing list of things that we're trying to incorporate. And, and it's just always going to be dynamic because the field of oncology is growing at warp speed. so, yeah, so the program, it's interesting how it started.

Everything Cancer (18:21)
It is.

Sams (18:27)
I was a hospitalist initially after residency. That's a hospital -based physician. And then I became a primary care doctor and then I got cancer. And I got, I was diagnosed with relapsed refractory Hodgkin lymphoma. So I took six months of the treatment, which has a pretty high cure rate, but I relapsed within a month of finishing six months of multi -drug chemotherapy. And

even before I relapsed, one of the first conversations, and I didn't hear anything about the word survivorship there, but one of the first conversations at my first follow -up visit where my scan was clean, no evidence of disease, and I finished that for six months of chemo, my doctor, who was very well -meaning and sweet, was like, congratulations, are you guys going to Hawaii? And I just kind of looked at her like, my God, read the room, I

miserable. Like, I am a shadow of my former self. I can't think I've gained 40 pounds on steroids. My sugar is high. I'm, you know, I don't, I don't, I don't even know if I'll ever get back to medicine, let alone go into Hawaii. Like, and I, I'm not even sure I want to be alive this way. Like these were the thoughts going through my head. And there at that time, there wasn't any

kind of mention of the word survivorship or what that could mean. And my first foray through cancer, I did kind of a very conventional path. took all the treatments that were recommended to me, but I didn't really add in a lot of complimentary therapies. I didn't know a lot about that or integrative oncology. I just sort of thought, okay, I got to check all these boxes, check, check, check. It's going to be a speed bump and then we'll get through it. Then I'll just like hit unpause and move forward with my life.

And then I got diagnosed with the relapse about a month later. boy, did that like, you know, it was just a surprise, a shock. And that's when I began seeing my cancer, like as a teacher and thinking, gosh, I think this is trying to show me something. And suddenly the, the cure rates, remission rates, survival rates are much different than the first diagnosis.

And then I kind of realized, my gosh, tomorrow is not promised. And I really felt that viscerally. And I think that I'm going to not just only do what my Western allopathic conventional medicine doctors talk to me about. I'm also going to start trying to understand, is this about something deeper in my life? And for me, I believe that it was. think

Stress was a really huge part of my illness experience and my illness story. I was a marathon runner and I was like a vegetarian and consider myself pretty healthy before I got sick, but I was also a stress case and I am a workaholic and I didn't sleep that much. And I kind of equated being very successful with being okay emotionally

after all the things that we had gone through with Sam's illness, I wasn't okay. had a lot of, and even before his stuff, I had a lot of earlier life trauma. lost a parent in childhood. And so there was all this kind of unprocessed grief and trauma. And I began thinking like, maybe that's all part of this. Like maybe that was my underlying belief

that there's something about that that's all intertwined with this. And that in addition to my chemo and my transplant and all that, maybe I better start looking into those things and find a way to release from fear and process some of these things and all that. And I also just started feeling the cumulative effects of being on chemotherapy for years. Neuropathy, just chemo -related cognitive impairment, the most severe form of chemo brain.

And so I started learning about that there's this thing out there called survivorship. I don't remember the first time somebody mentioned it, but when I started learning kind of what it was and how it was delivered in all these different places that some people kind of thought it meant supportive care. Some people kind of thought that it meant surveillance and they use those things interchangeably.

Some people thought it meant screening for late effects and second cancers later on. And then I started understanding, I think it's all those things, you know? And so I started seeking out survivorship care on my own in terms of integrative modalities like massage and cupping and acupuncture and juicing and fasting

And then learning like, wow, there's actually evidence for some of these things. I remember when I first learned about fast, like strategic fasting and appropriately selected individuals. So for me, I didn't have cocaxia or cancer wasting. So it was like safe for me to do. But strategic fasting around the days of chemotherapy, like going on a water or juice only fast the day before, the day of, and the day after, that it substantially can reduce nausea and improve energy and reduce the use

Everything Cancer (23:35)
Mm -hmm.

Sams (24:02)
the need for anti -nausea drugs. And I was like, my gosh, why didn't I, I wish I had heard about this. And it makes perfect sense because you decimate the gut microbiome with chemo, and then you give all these anti -nausea drugs that stop the motility. Like, of course it's asking a lot of your gut if you eat steak and ice cream, you know, and, I had received all this different advice about. Just eat whatever you want. Yeah. Cause that's the, that's the kind of the going great. I think when people are chronically ill

I had my own, and we had also had that advice, come closer. I'd also have that advice too, because one of my chronic illness was inflammatory bowel disease, which is a chronic condition of your gut basically. And when you're sick, you can't eat anything because just, you just don't eat anyway. It just makes you feel terrible anytime you eat. And so, but they're like, well, when you're feeling healthy, just eat whatever you want. And we had already been through that before. And with her it was like, there was just basically, well, if you have cancer.

and you're nausea and vomiting most of the time. And well, I guess when you feel like eating, then you can just go to McDonald's and have a Big Mac. And that's just like crazy advice, right? But I think, you know, I think one of the, we had a lot of time, we took a, we took a lot of walk because she, you know, she, she, you know, she usually is a, now she jogs all the time and I can't keep up with her. And also I don't like jogging. But we took a lot of walks and a lot of the walks we would talk about this. So one of the things we realized,

Everything Cancer (25:07)
Yeah.

Sams (25:27)
from a big picture standpoint is that kind of the cancer treatment has made unbelievable miraculous life altering, life saving advances in the past really 20 years, 30 years, but a lot in the past 20 with the biologic agents and the genetic, know, genetically targeted stuff. And so we have millions of people that would not be alive 30 years ago with the same diagnosis that they're getting today. And so we've really

we've kind of figured out the initial part, which is, okay, how do we keep people alive? Right? Okay. We got, we're really doing, we've made unbelievable steps on that. And that's obviously hugely important. That's the primary thing, right? But what do you do with all the people that are still alive and now have basically, they're basically, their overall health is totally altered from where they were before. What do you do with those people? And so we were like, this is a whole area of medicine that hasn't been properly, that has not been properly addressed.

that we determined basically really needs its own, you know, board certified subspecialty, because there's so much work for here. And oncologists are totally overwhelmed. As a doctor, you realize that like the pace of medical advancement is going faster than anybody can keep up with. That's why you have so much subspecialization, because there's, you know, what used to be, you know, one subject for one person now is now five different, you know, subspecialties. How do the oncologists keep up with that and all the new treatments and

with the increased patient because more people are having cancer and all people are more and more living with cancer. So these oncologists are totally overworked and they're not able to address all of the other stuff. Basically like the person's kind of overall health, spiritual, physical, diet, nutrition, mental health. Like there's a huge gap in care and something needs to be done about that. And I think the answer to that is basically what Samantha is doing at Kaiser San Francisco. So even just like

the food as medicine kind of conversation movement as medicine. I started learning about all these things and even how to have those conversations. Like I want to be clear. It's how we discuss those things. It's not that anybody caused their cancer because they didn't eat those foods. I don't want anybody to internalize that, that a Big Mac caused their cancer or anything like that. And when you're feeling really

I mean, there's some connections with food and causing cancer, but food can be a tool to reduce the toxicity of the treatment. Eating a certain way to heal, to flood your body with nutrition can help restore your vitality kind of going through treatment. so that's a very, how do you begin to have some of those conversations with people and explore what they might want to do in a way that you're, you know, they're

they're not feeling judged, you know, that they got cancer because they drank diet coke and you can show them like here are all the choices that you can have in order to make yourself feel better during cancer or afterward. So we have these conversations and we started imagining like, wouldn't it be amazing if there was survivorship, if there was like a doctor that started with you from the time of diagnosis because NCI or the National Cancer Institute defines

survivorship as anybody living after a cancer diagnosis through the balance of life. But we kept talking about, okay, so if that's what it is, then why isn't it practiced that way? Why isn't, in most places, why is it not delivered that way? And I started talking to different people like in Kaiser, where I practiced, and there's some really amazing clinicians who do survivorship medicine, but it tends to focus on just a few diagnoses, and it focuses

after active treatment, like, once you're in the clear, then we'll start having these conversations with you about how you can help yourself feel better, about your vitality, about how you reduce your risk of dying from heart disease later on. And I thought that just seemed crazy to me for a couple of different reasons. One is I think that there's so many tools in survivorship. What we think survivorship is, supportive care and cancer.

rehabbing from really hard treatments and then monitoring for second cancers and late effects of treatment and body image and intimacy and sexuality, all these different things that, you know, why are we waiting to have those conversations after the act of end of treatment? And it's so overwhelming, even the people who manage to get survivorship care going to a once or twice a year visit. There is so much housed within the field of survivorship.

It's like drinking from a fire hose. And so it made a lot more sense to me, like, why don't we start delivering these concepts in the very beginning? Somebody gets diagnosed and then we say, look, here's the word survivorship. At the very least from today's visit, you need to know the word survivorship because the word encodes this thing that will eventually become a new field in medicine. And

Everything Cancer (30:13)
Great.

Sams (30:36)
a new field in medicine that houses all these things to improve your quality of life and to help you heal from your treatments. And then the other thought that I had in addition to like delivering it more toward the time of diagnosis with repetition built in the model was what about metavibers, which are people living with active metastatic cancer. The whole field of metastatic survivorship has changed drastically in the last five, 10 years with targeted therapy.

Everything Cancer (30:56)
Mm -hmm.

Yes, it has. Yep.

Sams (31:04)
and the oral EGFR drugs, there are people alive and working and in society with metastatic lung cancer and brain metastasis. And they don't want to be treated like they've got one foot in the grave. Right. think in that, and that was also one of the big picture. think when I harken back to right when my mom was treated with breast cancer in 1989, and also in lot of places now, it's like you get cancer, you hit the pause button on your life.

And then all you're supposed to do is basically suffer through your treatment and get to the other end and then you can resume living. But Samantha's like, well, why do you have to wait until you have a clear scan until a doctor says that you're cancer free to live your life? Like we used to say, basically the job of the survivorship doctor is to make cancer suck less, right? So it's like, you it really sucks, but can we make it suck less? if you're, you know, and also like you said, there's just people who, cause of the advancements.

Everything Cancer (31:40)
Right?

Sams (32:01)
Now cancer is kind like a chronic illness, but it doesn't mean that they don't have side effects that they need help with. So they're never gonna get through the clear scan and they're never gonna be told that they're cancer free. What about those hundreds of thousands of people who need help and don't wanna hit the pause button? They wanna continue to work. They don't wanna just go a whole from work, because maybe work is a source of spiritual renewal for them. They love their job. Like I love my job. I love going to work. Samantha loves her work and you love your work. Why do we do that?

Everything Cancer (32:03)
Right.

Right? Exactly.

Sams (32:29)
What about if somebody is a runner, right? How do we help them with their neuropathy while they're in treatment so they can still maybe have a modified but still continue with the exercise that helps with their mental, physical, and spiritual health? How do we help people while they're being treated with cancer? Because it's no longer, I'm going to have to just grin and bear it, and it's going to be the worst two years of your life, but hopefully you get on the other end. That's two years. And a lot of people, you

Maybe they aren't promised those two years.

Everything Cancer (33:00)
I think if you look at this, from my experience, look at this from the lens of the oncologist's office too, and the patient is working with someone, the survivor is working with someone like Sam, their symptoms are going to be more well managed, their health is going to be better, they're going to tolerate their treatment better, some of the burden is taken off of the oncologist and the advanced practice provider's shoulders as far as managing a lot of

the barriers to treatment, things going off the rails because it doesn't happen as much when someone's health is more well maintained during treatment. Or if it goes off the rails, doesn't hopefully doesn't go off the rails as much. Or Sam, because of her conversations with the patients might actually catch things a little sooner. Anyway,

So I think that actually you would see better results and people would probably have just like when you see palliative care involved in treatment, you have better outcomes. But I think you'll see it's in a bigger, bigger scale, to be honest.

Sams (34:06)
Yeah, and

Right, lot of the things, mean, of course, a lot of the stuff in medicine you have to make, unfortunately, have to make a business case board, Samantha's always thinking of ways, how do we, can we reduce ER visits? That's one of the easiest things to measure is basically, if you have somebody that enrolls from time of diagnosis, over the course of their treatment, do they visit the ER less? Which is obviously better for places like a Kaiser system where all the finances are included.

you if they can save money that way. also, of course, from our perspective as a doctor, you don't have to go to the ER, which is anybody that's had to go to the ER, it sucks, right? Nobody wants to go to the ER. Even when you have to, it's the worst place to be as a patient. And especially when you have cancer, like you don't want to be exposed to everybody's pumping. go in there you're like, my God, like this person looks really sick and they're hacking up, you know, and it's just, it's tough. But I mean, there's just...

Everything Cancer (34:47)
Mm -hmm. It's awful.

Mm -hmm.

You

Sams (35:06)
There's so much more to do in all areas of medicine, I think, I mean, I think that the survivorship project is going to be successful because it just is good medicine. It's necessary, right? But also I'd say advice is that people like Samantha, like it's going to work because Samantha's doing it. Well, I mean, I, like I I've been a patient since I was 20 years old. 44 now. I've been a doctor, you know, since, you know, we finished medical school in 2012. but you

Everything Cancer (35:16)
Mm

Mmm.

Sams (35:36)
Her experience is unique and her skills as a doctor are also unique. So you put that together and her program is gonna be successful. And then hopefully, yeah, I mean.

Everything Cancer (35:44)
I have no doubt because you're a very intuitive person to Sam. In addition to being very smart, I can just tell by talking with you and what you're saying, you're intuitive. You listen extremely well. And that's a big part of what you do is being a really good listener. I cannot wait to see what happens with your program. And I think it's going to end up being forging a path for other programs to follow, to be honest. And I can't wait to see what happens.

I really

Sams (36:13)
Thank you. Yeah, I there's so, I just think there's so much work to be done in survivorship and that there's enough room for all of us and all of our ideas. And I don't think like I'm better than anyone. Like I, there's so much work that's been done already that's informing what I'm doing. And I really look to a lot of the experts. People have been doing this a long time to kind of help me. Like there's this organization called

Everything Cancer (36:19)
Mm -hmm. Yes.

Sams (36:42)
Cancer Survivorship Provider Network, which is really amazing. And I've been involved with them and I just put a call out to them like, hey guys, I need help. I need like a committee that can help me prove the return on investment because one, I'm not a researcher. I don't have a research background, but I think it's important that I work with researchers so that I can demonstrate how effective this is.

Everything Cancer (36:44)
Yes.

Sams (37:07)
This can't just be all rooted in passion. Unfortunately, for better or worse, medicine is a business. And even though I'm 100 % passion and altruistic intentions, I need people to help me prove what I know in my core of my being that this is good medicine, that it's going to improve outcomes. But I need people to help me prove

And so like I've got friends in the survivorship space now from all the networking that I did as I was getting into this and healing from my own treatment, you know, that are helping to kind of figure out, what does that look like? What are some of the things that we could measure? And I just love that because this is a team sport. And even with oncology, like I think it's just part of the role of the oncogeneralist or somebody who's doing survivorship from the time of diagnosis.

Everything Cancer (37:51)
Right.

Sams (38:02)
is to break down the silos and to have really good communication with oncology. I talk to oncology all the time and I say, this is what I'm thinking. Do they need this test? And they'll say, no, no, no, they don't need that test or thanks for letting us know we didn't know that they felt that way. And also you could talk about how the patient that had the three different providers and they're all on different pages basically, remember? yeah, I mean, yeah, yeah. had, yeah.

Everything Cancer (38:04)
Mm -hmm.

Sams (38:31)
a where there were just a lot of different subspecialists involved and they were all saying different things to the patient. And so I can be somebody who really quarterbacks for people and says to the provider like, hey, you said this, you said this, you said this, this is what the patient heard, this is what I'm hearing, help me help them. because a of people who are going through cancer, they have a medical oncologist for their

They have a radiation oncologist for the radiation, then they have a surgical oncologist that's going to be part of like a surgery site. And these three people don't talk to each other necessarily. Like maybe they read their notes in the medical record, but you could go, but you you could have an appointment Monday and then Tuesday to Wednesday. And before their documentation in the chart, they're hearing three different things. And without somebody like Samantha in the survivorship work, that person's like, I don't really know where I stand. I don't know what questions to ask. I don't know what I'm doing next week. So it's really important to have somebody that can bring it all

Everything Cancer (39:25)
Right. That is very helpful. Really. One of the things that we were talking about before we started recording that I think is really important and I know you were talking about in Washington, DC with CPAT is self -advocacy and where you found yourselves the hard lessons you learned and what you think

are really effective ways to advocate for yourself.

Sams (39:59)
I've been talking too much. Well, think like one of the things you talk about is there is, and I dealt with this as a patient, right? I've basically been a patient long and I've been a doctor. So I always kind of veer more towards the patient side is that this need that patients have for the doctors to like them. It is really, I think it's understandable.

that you want your doctor to like you. I think people unfortunately feel that, you know, if my doctor doesn't like me, I'm not going to get the same treatment as I would if the doctor liked me. That somehow the care is going to be different if their doctor likes you. And so that I think it inhibits people at times to advocate for themselves, to ask, you know, ask hard questions of the doctor, to maybe push back if they don't understand. You know, we're definitely, not where we were back in the earliest medicine where you

whatever the doctor said and you don't ask because the doctor knows better. think people definitely with the internet, people are definitely a little bit more. But still, think it's when the more serious the medical problem, it almost feels like the less people push their doctors. Like, you know, when it's less serious, they feel more room. But like when your life is on the line, I think people feel really scared to to to to question or to or to, you know, just to really get into a dialogue with the doctor, because that's what it should be. Because there's very rarely one treatment.

that fits everybody. so you have to, patients need to get over this thing about worrying that their doctor likes them and whether it's going to affect their treatment. And that's stopping them from advocating for themselves. Like some people won't talk about side effects. Like we have people that we talked about who people that, know, like for instance, Samantha told me, I didn't even know about this. Like basically like a lot of people after breast cancer are on these, the endocrine or... Yeah, the endocrine therapy. They have endocrine therapy and the endocrine therapy.

makes them feel so terrible that they don't even take it because it makes them feel so miserable and they're basically afraid of their doctor that if they don't do what their doctor has recommended and say, look, I'm not taking this endocrine therapy because basically what's the point of living if I feel this terrible? Why would I want to take this medicine that makes me not want to live? And so they don't tell their doctor. So that can lead to the worst outcomes. But you can speak more to that on that particular front. Yeah. if they feel that they can't advocate for themselves and

how I show up as a provider makes it okay to say, I'm totally miserable on this endocrine therapy, like I need help, it hurts so much. Then I'm like, yeah, of course, a lot of people struggle with that. Let's prescribe you a course of acupuncture. What about movement as medicine and Qigong or all these different things that might not occur to people to try. And then they feel better in their body and they're able to tolerate their endocrine therapy or their adjuvant treatment.

Because I wasn't just I didn't just respond like no you just have to take it. That's just what you have to do. know people that have basically You know also people need to feel comfortable with bringing up like that's why it's so important this method also is doing this integrated fellowship Integrated fellowship in every medicine fellowship, right because people are obviously out there. They're on the internet. They're googling things They're like I want to do everything possible stay alive for myself for my children for my family

So what about this herbal supplement that I'm reading about? What about this thing I saw on YouTube? And there may be things that if they go to the doctor with one to take kind of out of the Western medicine box, the doctor's going to look at them like they're a crazy person, right? So we really want to make a safe space for people to understandably do everything they can, but we don't want people to run away from the Western medicine, which we know is also effective, right? Because we have people that basically stop doing their Western medicine and

Everything Cancer (43:38)
And they're not. Yeah.

Sams (43:52)
kind of went off on the kind of alternative treatment. But people need to be able to do both. We want you to say, look, this is what we recommend from the chemo, but if you want to go off and do acupuncture, you want to try some herbal options, like do that too. But we want people to feel safe to do both. And I feel as a survivorship clinician, I need to know, okay, well, what supplements are like, you know, liver enzyme, inducers or inhibitors and will interact and, you know,

either make your therapy more toxic or less effective, and how do you source a good vitamin? Maybe there's parts of your treatment where you shouldn't be on any vitamins or supplements at all based on what we're prescribing, and just how to have more of those nuanced conversations so that patients know, like, okay, like, she's okay with complimentary therapies just at certain parts, and she just wants me to be safe, and she'll let me know when it's okay to try those things.

And the answer is not just like, no, that's quackery. Don't try any of that. Like only do what I say, you know, because I've encountered people who have had that response from their clinicians, you know, at different parts of my career with like catastrophic consequences where they did feel judged that, and they didn't feel like they could disclose some of the things that they were trying and sort of paused the things that we know work.

Everything Cancer (45:02)
Mm -hmm.

Sams (45:20)
because they wanted to try other things first. And it was about the sequencing of things and not being able to safely combine all the appropriate choices at one time and deciding on their own without the medical team, like, I'm gonna try this first before that, and then losing ground with the cancer. So, yeah.

Everything Cancer (45:43)
That's amazing. I actually interviewed a clinical oncology pharmacist who has very in -depth conversations with patients about that. And he said one of the things that's really important to him is to give the patients he works with control. He does not want to take that away from them, but he wants them to understand exactly what you were saying when it's safe to take something and when it's not, there may be times they need to time it with their treatment.

or times they need to avoid taking it altogether because of toxicity or interference issues. And he's actually working with an advanced practice provider in his particular healthcare system to start a survivorship clinic that starts with diagnosis because of his specialty. So I would say suggest to Kaiser Permanente to see if you can have a clinical oncology pharmacist on board four or eight hours a week that you can go to.

to run these things by because that is their wheelhouse, like down to the molecular level. And it sounds like you understand it very

Sams (46:42)
And she is, I mean, this is what, I I won't speak for her, but I mean, we've talked about this stuff. I don't know nearly as much as her, but I know that what she needs, right? What we all need, mean, what I need, my PhD practice is, know, multimodality, basically specialist, right? So survivorship programs need to have, you know, advanced practice providers and MDs and DOs, right? They need to have a social worker.

Everything Cancer (46:59)
Right?

Sams (47:10)
they potentially could have a nutritionist and they definitely need to have a clinical oncologic pharmacist, I think is a term, right? I mean, you need to have all these things. so for a flagship product to be optimal, you need to have everybody together because the healthcare provider, the APP or the MD is not gonna be able to do everything on their own. And not to mention these people, the clinical pharmacists, they know so much more about the

Everything Cancer (47:18)
Yes.

would be amazing. That would be wrap around.

No, it's too much,

Sams (47:39)
I they are a wealth of knowledge. mean, they just know so much of that. And to not take advantage of that would just be terrible.

Everything Cancer (47:45)
But your wealth of knowledge, Sam, is obviously amazing. I'm so impressed. And that you work with your patients down to the nitty gritty. You give them a lot of control, and that's so important. Our audience is that I'm sure they're sitting there nodding their heads saying, yes, yes, that sense of control. And you get that because you've been through this. There are so many things you can't control. So anything you can is.

Sams (47:51)
Yeah.

Everything Cancer (48:10)
so near and dear to you and you want to hold on to it and integrative medicine is so important. But that's the is another definition of integrative oncology is you integrate the the the supportive care the complementary medicine with the Western medicine. And so you practice integrative medicine and integrative oncology and right.

Sams (48:33)
Right? I always say, I'm not telling people to meditate their cancer away. I go over the labs and the scans and I help them follow the treatment plan of the oncologist. And I talk about all this other stuff and I ask them, one of the most important questions I think I ask, because I wish it would have been asked of me is, do you have any underlying beliefs about your

Everything Cancer (48:40)
Right.

Sams (49:01)
And know, just very open -ended and some people say, yeah, I think it's my childhood trauma or I think it's my toxic marriage or I, you know, I've had a really horrible workplace situation for years and I felt like there was never an out and people will tell me all kinds of things. And I try to honor that in their story and in their cancer experience. I don't, I don't.

try to like argue people out of their beliefs. I'm like, yeah, if that is your deeply held belief, that needs to be at the center of this experience. And like, let's do everything we can to help you address that to release it, whatever we can. And that's part of the medical plan. And it's important along with your infusions and your radiation and all that. we need to also be there's a I mean, look, doctors are doctors work hard. And oncologists have huge patient loads.

right, because of where cancer is staying in the numbers. So patients need to not only think about advocating for themselves, but they're also thinking about helping your doctor, right? So one of the things that we kind of talk about is good ideas like bring in a picture of what, basically maybe if the doctor's ever seen you before your treatment, bring a picture of what you look like when you have your hair, when you look healthy, You're bringing a picture of doing something that you love. Maybe you're a violin player,

know, help the doctor understand who you are when you're when you are at your best. Like this is what I love to do. This is what's important in my life. Is there a way that we can somehow during when I have my cancer, can we somehow protect these things? Right. Like if I am a violin player and I'm going to get and I'm going to get chemotherapy, that's going to give me bad neuropathy. Can we really focus on that particular side? I want to do everything I can so that I can continue to play violin through my therapy, because it helps me to maintain my spiritual wellness.

So help your, bring in pictures of yourself, introduce your doctor, like, and by the way, I used to be a gymnast or I used to be a competitive swimmer. These are the things that help me maintain my mental, physical, and spiritual health. Like help your doctor so that they know how to help you better. And that can translate to like practical things. I mean, if neuropathy is a really huge, big ticket item for you, I mean, there are these gloves that people can wear that cause constriction in the vessels during chemotherapy.

almost like cold caps on the head that reduce neuropathy. And not every place covers it, but patients can get them themselves. And it's like, you don't know what you don't know until you have these conversations.

Everything Cancer (51:36)
I think open communication with your oncologist is so important and Sam knows this from going through the book I sent her. Keeping track of your symptoms and not waiting till your next appointment, but notifying your oncologist, notifying the Sams of the world if you are fortunate enough to have one of what is happening and what your symptoms are and on a more prompt basis. And then also keeping

writing your questions down ahead of time, like you were saying, Sam, so that you can walk into your appointment prepared, A, with your symptoms already documented and they're like real data. You're not recalling them off the top of your head. And then also your questions written down ahead of time, because that helps that conversation go. And you are helping your oncologist then get through their visit with you and understand what you need. On top of that, what you were just saying,

identifying what is important to you and what is important to you can be very fluid. Just like how you feel during your treatment is fluid or your priorities may change as you shift one from one part of your treatment to another or your outlook shifts, your priorities are going to shift. And so if you sit back and just think about what is important to me right now over the next three months, over the next six months, over the next year,

And writing those down can help you have that conversation with your oncologist and with your oncogenerist or the generalist or the person that you're working with in your survivorship. And they'll help you get there. They will help you identify how to get there. And it may also mean advocating for yourself to be strong in stating that. And I like how you said you

Don't worry about whether or not your oncologist likes you. It's more, this is how I explain it to people is this is your life. This is how you feel. This is your future. That's a lot at stake. So keep that in mind when you're in that room. This is the oncologist's day. This is, they're very passionate about what they do. They have to be in order to spend the kind of time they do, but it's their job.

And so there's different set of stakes there, if that makes sense. Also having another person with you can make a big difference. A, they can add moral support. B, if you can't quite get to asking your questions because your heart is pounding out of your chest, they can ask it for you if they know what your questions

Sams (54:15)
And on that note, one of the things we talked about, like we did a whole topic, we learned the whole topic basically, the role of the, first of all, role of the support, the primary support person. We talked about how to support the support person, but also the role. And one of the roles is the support person doesn't have the burden of wanting to be liked by their doctor. So if the person is like worried that if I push on this particular issue, the doctor is not going to like me because I'm questioning their medical decision -making, let your support person be the better.

It's okay, know, the support person doesn't need to be liked, right? So they can ask a question that maybe the patient themselves is a little bit timid or afraid to ask. Have that difficult question come from the support person.

Everything Cancer (54:57)
and always ask for a second opinion. If you are questioning things, there is no harm in getting a second opinion at all.

Sams (55:04)
Yeah, we hit on that. That was one of our main topics was always ask for a second opinion and also ask from the front. Your treatment does not have to be failing to get a second opinion. It's like, when you get your roof redone, you get multiple bits. So you're not going to get multiple opinions on something that your life depends You're just going to go with the first guess. I guess this sounds good.

Everything Cancer (55:10)
You all right?

Sams (55:31)
Get a second opinion at the very outset. If you're oncologists, which I think most of them are, if they're not okay, or if they seem threatened by a second opinion, then maybe that's a red flag that you need to find a provider if it's available. Because all good doctors, their ego should be small enough to know it's not about you, that your patient needs to feel confident in whatever treatment they're going with. You should be encouraging a second opinion. And I think most oncologists are on that page. They're like, of course,

Everything Cancer (55:41)
Yes.

Exactly. Yes.

Sams (55:59)
We encourage second opinions. Please go to this person. know, that's like, like, should be almost lesson number one. Get a second opinion from the outset.

Everything Cancer (56:06)
Yes. And if there's progression or if you're not feeling right or things are not happening the way you want them to or your symptoms are not being managed and it's really interfering with what's important to you, you can go get a second opinion or you can talk to someone else. You can talk with your navigator. You can talk with Sam. You can talk with your PCP. This is what's happening. And I want to talk with someone else because I can't go on this way.

and my oncologist isn't hearing me or whatever. if your oncologist isn't listening, find someone else who will, who will help you find someone else to talk with about it. That's incredibly important because symptoms can be managed in different ways. Palliative care can help you. They think outside the box. And now we have integrative specialists, integrative medicine specialists who often cross

palliative care and thinking outside the box, but they go, they really go into a lot of complementary medicine too. So there's a lot of, there's a lot more resources out there and gather your people around you to help you find them. In fact, maybe if there isn't a survivor clinic, survivorship clinic around you, find an integrative medicine PCP or functional medicine PCP who also understands oncology and we'll help support you through

Sams (57:32)
Yeah, I didn't come by all this knowledge easily by being a doctor. then this was all really painful lessons, I think. I didn't join groups in the beginning. just thought, like joining groups and nonprofit stuff, I don't know, it's going to make me sad and it's going to be like such a downer. I really kind of thought that and held a lot of those

Everything Cancer (57:38)
Hahaha

Sams (58:01)
kind of preconceived notions. And then when I started joining, when I became a joiner, I was like, my gosh, this is not just amazing emotional support, patients and care partners who've been at this a while, they know a lot of stuff, like a lot of really good information about navigating care,

Everything Cancer (58:17)
They do.

Sams (58:25)
early introduction of clinical trials, you know, don't have to wait till you're on death's door till you filled multiple lines of therapy to look into a clinical trial for something. They know about, you know, just living with cancer. And that was such an eye opener. And so now I encourage people like to become joiners as soon as possible, because I think it helps complement all these other parts of your care where maybe your oncologist can't do everything, but

These are all really important pieces of the cancer experience, the everything cancer, you know? These are all really important parts of it. And I think if all this has failed to address, I don't know, it's just really important. Like I believe that healing and cure are not synonymous. And I mean that somebody can be, their cancer can be cured. They can have no evidence of disease, but still be really in turmoil internally.

And I also believe conversely that somebody could have really advanced metastatic cancer and can be healed. Like I think that healing is possible in all stages of cancer, even up into the end of life. And that is some of this little more kind of nebulous supportive care type of stuff that's really important. Yeah, mean, exactly. Yeah, exactly. think, I think just to emphasize, I've never been a joiner myself of support groups, but I think

You know, I think, but with Samantha's experience with support groups, mean, patients know so much. can't, you just, even if you've been an oncologist for 30 years and you've prescribed and you have that third experience, until you have one day as a patient, don't, can't, it's almost impossible to have that perspective. Even if you're the most, most well -meaning, most empathetic person, it's just different. And so these support groups, I mean, I think it's sometimes it's a little bit scary. I think one of the things that I was scared of was like being in a support group with people that have

Everything Cancer (1:00:00)
They do.

Sams (1:00:23)
a similar diagnosis but are actually worse off. Seeing like what the people that are worse off with cancer, that might be scary. Like I don't want to in this program because there might be somebody in there that's really, really sick and that's scary. And I don't know how to get over that, but there is so much good information from patients, especially if you're just starting out, somebody's been doing this for years, they could hopefully help you to avoid the same mistakes that they went through.

Everything Cancer (1:00:50)
It's not just mistakes, it's how to overcome barriers to the great right.

Sams (1:00:54)
Right, I have a mistake, Shirley, because you don't know you're making a mistake because you don't know, right? Yeah.

Everything Cancer (1:00:58)
Right, right. mean, it is a great sharing of information and the peer support is amazing. And to your point, Sam, the support group I facilitate, we had a woman who entered hospice, but she talked about her decision and she said, I'm going to golf as much as I can until I go. And we all laughed about it with her. I mean, it was, it was a tough conversation, but we ended up laughing at the end.

And we talked about, and to this day, we talk about her and her golfing. But I think that conversation was very comforting to the other people in the group because if they ever have to reach that decision, they have her as an example now of how to handle it. But she lived life to the end. Like you're talking about living life is, I think that is so critical to live life.

no matter where you are in your journey.

Sams (1:01:59)
My friend, I would be remiss if I didn't mention my best friend from Blood Cancer Support Group who passed away, Tati, and she completely like reframed cancer for me and vitality and cancer. And she said things like, I just want to be fully alive until I'm not. And she said those things in our support group. And she also would say things like, they're treating me like I'm already gone, but I'm still here, you know?

She was the most alive human that I've ever met. And she was only in remission like five days of the year that I knew her. And she showed me what is possible, like how much vitality is left on the table for people with cancer. they need, people need help accessing that vitality, like making those choices about golfing, about hospice, about even in California, one of the things that has come

recently with some of my patients is end of life option. There's people that have progressed on multiple lines of therapy and another choice that they want to discuss is the end of life option act. And that they want to just like have a party and see everybody that they love and say goodbye and then take the medicine. know, I mean, there's all these different and that's a choice too, you know, and even though it's a very difficult thing to talk about, people want the whole menu of options.

regardless of where they're at. And I think that I just love the movement of advocacy and choices that's happening in cancer. Because I think you think back to the 50s and the 60s and just cancer was such a, it was a bad word, know, it was taboo. It was, you know, shameful. It was very sad and kind of kept in this, in the shadows. And now I think there are people living fierce lives with cancer.

But you still see the concern about like the stigma of cancer, especially with some celebrities like who suddenly pass away and you're like, my God, they had cancer. We didn't even know they had cancer. And I think part of it is because there are people didn't, they don't want that to be their whole identity. know, even though it is a huge part of their life, they don't want that to be their whole identity. And so it's really interesting. I think the conversations that are happening in cancer in society and

Yeah, we just we need a whole new field of medicine to to address it because it's it's just changing so

Everything Cancer (1:04:30)
And you are pioneering it along with many other people, but you are, you're blazing trails along with many other people. Is there something that we haven't covered? Because I'm sure we'll be talking again in six months or eight months to check back and see how things are going. But is there something we haven't covered here yet that you would really like to talk about? And I think another interview sometime would be Body Image. I think that would be a great interview for another time.

Sams (1:04:56)
That's what I was thinking. my gosh, we didn't even talk about like sex, intimacy, work in cancer. Because even romance, mean, yeah, we have had to reinvent our intimacy just many times throughout this. And as with body parts changing and losing hair and, you know, ostomy and just a lot of stuff. And there were some rough patches.

Everything Cancer (1:04:59)
We can.

Romance.

Sams (1:05:26)
that was difficult. And then also even like, I think the work conversation was really an eye -opener for me. There were times when I could not work. I didn't feel well enough. My cognition was not where, you know, where I felt like I wouldn't want a doctor like me right now, you know? And so rehabbing from the treatment and then

more nuanced conversations about like, well, what type of work do you do? And like, is your work able to accommodate you? You know, there are different options for modified work and, and we're not very good at those conversations in medicine. And so I think those are, you know, just another set of choices. But yeah, those are some of the things I think we'd love to, that it really impacted our lives, especially in

the AYA cancer space, so adolescent and young adult, I think that goes all the way up to maybe 45, depending on how it's defined, shepherding a young family, work in cancer, intimacy and body image, those are some really hot ticket items for us. Right. think that's the last thing I would say is I think that you don't necessarily have to reinvent the wheel because I think as a pediatrician,

Everything Cancer (1:06:33)
Well, let's go ahead. What were you going to say, Sam?

Sams (1:06:43)
If you look to how childhood cancers are managed, you can learn a lot about what we need to do with adults. Because they basically been, know, where I trained in my residency for pediatrics, it was like basically the referral center for all of Northern California for pediatric cancers. we had cancer, when we were in the hospital, we had a whole team of, we had 10, 15 kids with cancer.

And when you see all the support, mean, as soon as you, as soon as your diagnosed with childhood cancer, you're meeting with a social worker, you meet with the clinical pharmacist, you meet with the child life specialist, and they are basically doing survivorship already in pediatric cancers. And if we could pull basically some of that or all of that into the adult world, a lot of these shortcomings would already be addressed because they're, because, you know, it's, and then I'll go back to point

You don't have to hit the pause button on your life. It's not like you said, these celebrities, like you get cancer and you just like disappear off the face of the earth and why you're being treated. You don't have to just pause your life and just all you have to do is be a cancer patient. know, bite your, your teeth and get through it. We need a way to help people live while they have cancer. So all they're not, so the only focus shouldn't be just not on dying. It should also be on living with cancer, right? Cause people will live five, 10, 15 years with cancer and that's fantastic. Yeah, you just took the words.

Everything Cancer (1:08:08)
It is fantastic or even longer.

Sams (1:08:10)
Or even longer. They'll live forever. They'll live 30 years. I mean, exactly. They'll live 30 years. But not dying is not the same thing as fully living. And like we need a higher bar than not dying. You know, that's kind of like my thought going through this is we need to aim higher than just not dying. You know, and I think one of the things I say repeatedly in multiple spheres in the cancer space is it's not greedy to want more than not dying. So for me, getting back to jogging,

Everything Cancer (1:08:21)
Yes.

Sams (1:08:39)
feeling good about my body, being able to have sex and enjoy it. Those were all things that were really important to me. Quality of life, having enough energy to run after my kids. I wanted more than not dying. And there were times when, I don't think it was any one provider, it was just the process in general made me feel like that was asking for too much, that I should just be grateful that I'm one of the lucky ones who got a good cancer and got to stay alive.

And I just don't think that that's the lived experience for a lot of people like they and and there's all these reasons why it's very difficult to bring up Just quality of life issues, you know, I think some of it's like they're difficult conversations. They can be embarrassing I do a lot of work with National Coalition of Cancer Survivorship NCCS and they they give this Survey every year State of Survivorship and one of the things that they found out is that some patients

bring these issues up, not because, and the main reason why is because they're not even sure anybody could do anything about it anyway, you know? So there's this hesitancy to bring it up,

Thank you to you and to all the survivors, thrivers, cancer crushers, whatever people want to call themselves. Like, thank you for all the conversations that you've had with me, all the comments, because I try to, I really think about the things that people tell me and the experiences that they share. And I try to include that in some way, shape or form into what we're building

Everything Cancer (1:09:47)
You're welcome.

Sams (1:10:13)
It means a lot. I this is not all like my idea I hope that what we're building is a reflection of all the things that I've seen and have taken in over the last few years from everybody that in the cancer community across diagnoses. So, thank you.


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