Joelle Kaufman: Breast Cancer Champion and author of Crushing the Cancer Curveball: A Playbook for the Newly Diagnosed and their Family and Friends.

Episode Transcript
Available transcripts are automatically generated. Complete accuracy is not guaranteed.
(00:00):
Hello and welcome to Healthy Longevity.
I'm Florence Comete, founder of the Comete Center for Precision Medicine and HealthyLongevity.
I'm really super excited about today's podcast because my guest is a woman that I havemuch respect and admiration for, a woman who has played all nine innings of a contest
against breast cancer and then some.
Joelle Kaufman's mom had breast cancer.

(00:22):
Her sister had breast cancer.
So Joelle was a caregiver, cancer caregiver before she actually became.
breast cancer patient herself.
She endured the fear, the uncertainty, the decisions, the procedures, the setbacks anddisappointments that most cancer patients face and experience.
So who better to write a book that not only chronicles her journey as a cancer patient,but as an incredibly useful guide to navigating the challenges of a cancer diagnosis.

(00:49):
The book is really filled with tools, advice and compassion that can really help bothpatients and their loved ones.
It's called Crushing the Cancer Curveball, a playbook for the newly diagnosed and theirfamily and friends.
Welcome, Joelle.
Thank you.
It's great to be here.
And I'm also delighted that we have a special guest that's joining us, Dr.
Laura Esserman, a nationally renowned breast surgeon and director of the University ofCalifornia San Francisco Breast Care Center, who actually performed Joelle's surgery.

(01:18):
Welcome, Dr.
Esserman.
Glad to have you.
Should we drop the formal names and just go by Florence, Laura, and Joelle?
Okay.
Great.
Anything you want to add, Laura?
No, I think the only thing that I would say that's like I've devoted my life to try andfigure out how to improve the way we treat and reduce the risk of occurrence of cancer,

(01:42):
progression of cancer.
And, you know, I think I'm working on advancing that knowledge through large nationaltrials where people can get better care and where we can also be learning so that we're
helping.
the next person who comes along.
That's a fantastic goal.
I admire it deeply.
It's hard to accomplish, but you're part of the way there just in the work that you'redoing, which is fantastic.

(02:07):
I'll go back to Joelle for a minute here too, because besides being an author, she's CEOand founder of GTM Flow, which coaches and consults CEOs and other leaders of companies,
mostly in the high tech world.
Did I get that right, Joelle?
You did great.
Excellent.
So what I said at the start, your book is not only incredibly informative for peoplefacing cancer and their loved ones, but I found it both comforting and compassionate.

(02:32):
And I can only imagine that you could have benefited from such a book during your journey.
Well, that's exactly right.
Like the first time, and hopefully for most people, the only time you face cancer, it'sdisorienting.
There's a bunch of doctors and language and terms that as a lay person, you're notfamiliar with.
And even though it's not an urgent crisis most of the time, it feels very urgent.

(02:57):
It feels like now that I know, I have to do something right now.
And while I don't think any of you would say we should delay
for a long period of time, one of the things that I realized was the second time we sawcancer, and to be clear, Florence, I think I was number 12.
So like I've really seen this disease.
I don't know anything about any other disease, but I know something about what it's liketo be a caregiver or a patient of this one.

(03:22):
And it is so much easier the second time because all of those things that were unfamiliarhave become
predictable.
You know you're going to need more tests.
You know you're going to need more scans.
You know you're going to see multiple doctors and that those doctors are not going to giveyou a definitive plan until they have gotten a bunch of data and probably conferred with

(03:45):
each other.
And so you don't feel anxious that they're not giving you a precise plan because you knowyou're not getting one until there's good data.
And one of the things I wanted to do with the book
is give people, you will, a life ring, or I called it a playbook, for those moments whenyou've just heard news you never want to hear.
It's the hardest news I actually called the surgeon who told me and thanked her for thekindness with which she told me, because it's got to be awful to have to tell somebody,

(04:12):
I'm sorry, it's malignant.
You know you're rocking their world.
And you don't have answers about everything that's going to happen.
or the really pressing question, am I gonna be okay?
Right?
So without being able to answer that question, because I can't, I wanted to give people aplaybook so that they could unpack, this is a set of things that will likely happen.

(04:33):
And then it really became a mission.
Because the narrative, when you hear it's cancer, the first thought is, for most people,is I'm gonna die.
It wasn't my first thought.
That doesn't make me special.
it makes me the daughter of a 43 year survivor.
The sister of a 20 plus year survivor.
And that's a perspective shift most people don't have the blessing of having.

(04:54):
So my first reaction was actually, you have to be effing kidding me.
Because it was the day before I was supposed to have a prophylactic mastectomy and deepdeep flap.
And then I said, okay, so we'll do the surgery tomorrow and then we'll deal with it.
And the surgeon said, that's not how we deal with your type of cancer.
And so another thing I wanted to do in the book was change the narrative so that peopleknew this is something you can get through.

(05:19):
And I can't promise outcomes, but you can get through it in ways that are more or lessbad.
And I was able to transform it into one of the happiest years of my life.
And I mean, I remember a lot of times laughing with Dr.
Esserman, or I'll tell the story and she'll add to it.
But Dr.
Esserman, when she takes her patients into surgery, she offers to sing for them.

(05:43):
And it's a wonderful thing and it's very calming and it humanizes the whole thing.
Turns out I'm a singer too.
And so when she told me that, I said, what do you think about a duet?
And so we duetted me into surgery and into anesthesia.
and it just put a smile on my face.
And I hope it put a smile on your face.
I think that's a good way to go into a big circle.

(06:04):
Absolutely.
I think you were in a unique position though, and we can start back when your mother wasdiagnosed, but the fact that you can say it was the happiest year of your life when you
got a diagnosis that you know could be devastating, even though you lived through otherpeople's experiences, your closest family, is almost an oxymoron that you can feel that
way.
It is very, it's not common.

(06:26):
So the fact that you can give people some both perspective and insight is great, and thatyou yourself can say,
by becoming familiar with what this could mean.
My world was rocked, but I managed to own it.
I owned the process.
Even though it sounds like you also, it was changed for you.
The night before you were expected to get the care you were going to get, you had tocompletely revise everything in your life to be able to cope with it.

(06:50):
So that's pretty admirable.
Well, whether or not it was admirable, mean, my memories of chemotherapy from my sisterand my mother were awful.
And thanks to work like what Dr.
Esserman does and the teams at Yale, UCSF, and here at There's so many more options.
And there's palliative care to deal with some of the options.

(07:10):
And a lot of people are so paralyzed by the diagnosis that they don't know that there area bunch of questions they can ask.
You know, at no time, I had a great team.
Dr.
Essamon and her team are extraordinary doctors and I feel very lucky.
And I wanted to be their partner, but that didn't mean I came in bringing Google readouts.
I never did that.

(07:31):
Frankly, I'm confident, I felt very confident that Dr.
Essamon, Dr.
Chen had the state of the art and that they were offering me the best possible
for the longest, best impact.
And that confidence was really reassuring.
And it allowed me to ask questions like, can I take this supplement?
Yes, no.

(07:51):
What does this mean when you said I shouldn't have sex?
Like, let's talk about that.
That was Dr.
Chan, that wasn't you.
We fixed that.
We fixed that problem.
It wasn't that.
I had misheard.
And you do.
You mishear all the time in this conversation as the patient.
Even when you record it, because you're adding a narrative in your head.
Well, what did that mean?

(08:12):
Or did I hear that right?
Or am I going to be able to work?
What's it to do to my kids?
If you don't have kids, what's it going to do if I want to have kids?
My sister was diagnosed at 29 three months before she got married.
diagnosis of your mother and your sister, you were 13 when your mother was diagnosed andthen your sister later.
How did it impact your family?

(08:32):
You're talking about your impact and actually a lot of what you just said should help thelisteners because if this is something they're facing or they faced it through best
friends, close friends or family, it sounds like it might be helpful to have somebody withyou to translate, to be there and support.
or even look for support from people who've survived it, who may not have your familyhistory and are alone with the diagnosis for the very first time.

(09:00):
Yeah, one of the things I suggest, and it's probably different for everybody, but becauseof the timing, and I'll answer your question about my mother and sister, but because of
the timing when I found out I was having, I had cancer and I wasn't having surgery, I hada unusually large group of people that thought I was having surgery the next day because I
knew I was gonna be not working and I might need help and my family might need help.

(09:24):
And so there were a bunch of people who knew I was having this big surgery that I wasn'thaving.
And so I tend to encourage people to tell people, probably not the day you were diagnosed,that's probably not the best day that you're telling people.
I ended up telling a couple hundred people the night I was diagnosed.
And so what I did though, and this is important for your listeners, when I told people, Isaid, it's a curve ball.

(09:45):
I actually said the universe flipped me the bird.
I was diagnosed, it is this, it is triple negative.
I know what that means.
Please don't send me links or stories.
Here's what I do need though.
I need an oncologist.
I don't have an oncologist like most people who don't have cancer.
Why would I have an oncologist?
I really want to work with people at a national comprehensive cancer center.

(10:06):
Did I use the right word?
Mm-hmm.
Right?
And I live between two of them.
So, you I need an oncologist.
I'd prefer they be at one of those two places.
And I do not know the plan.
So please don't ask me or my husband or anyone else.
We don't know the plan.
I'm starting a caring bridge, which is a website that you can privately blog and shareinformation.

(10:26):
I will update there and we will let you know if you want to help what help we need.
Because what I remembered when my mother went through it, I the day I was told my motherhad cancer, I was 13.
was like, this isn't possible.
It's a 36 year old.
athletic, fit, strong, incredible woman.
What are you talking about?
Cancer happens to old people or sick people.

(10:48):
No, it didn't.
Cancer happened to a healthy, vibrant person who is now a 77-year-old healthy, vibrantperson.
I think that's also great.
But I went to the library and I researched and decided she's going to live and being 13,was very black and white, it was fine.
Little stupid, but it worked for me at 13.
But when she got a local recurrence, and Dr.

(11:09):
Essam and I don't know if I'm using the word right, it was in the same location, like onthe scar line of where her mastectomy had been.
So they didn't believe it was a new primary or a recurrence.
They believe it was kind of left over.
It's a local recurrent.
Okay, so a local recurrence.
That rocked our world.
That wasn't supposed to happen.
And when we went through, she went through chemo and radiation, it was very isolating inthe 80s.

(11:31):
People referred to cancer by going...
But you know, right, some contagious disease, which it's not.
And so my parents were very lonely and very scared and very isolated.
And my sister and I were very lonely, scared and isolated.
But let's, she got through it, we got through it, our family's tight, they supported eachother.
20 years later when my sister was diagnosed, also two months post doing an Ironman.

(11:55):
So again, at the height of fitness.
we knew like this, isn't happening again.
We didn't know about the gene yet.
And, she chose to allow people to help and people wanted to.
And so there were people bringing meals or people driving or visiting.
And I wouldn't say it was a happy experience because she had a very aggressive, toxicchemo that I am glad I was able to avoid.

(12:18):
But.
I saw the power of having a community supporting you.
And so when cancer came for me and I told people, I did know some of the things that wouldhelp.
And I joke, there's a chapter in the book, it's either chapter 15 or 16.
It's all the things that someone who doesn't have cancer can do to help someone who hascancer without having to ask the person who has cancer, because that's just more work,

(12:39):
right?
So I was really lucky.
My best friend is a phenomenal organizer.
So Jessica took on.
I'll do the meal plan, I'll do the driving to and from UCSF, and just took that off myshoulder.
She also handled telling people, no, we're not having a party because she's not havingsurgery.
I was gonna do a whole bye-bye boobies party, which I did May 3rd, but I could not do inJanuary.

(13:02):
So anyhow, I welcomed people.
And the reason it became one of the happiest years of my life is because I never felt soloved and supported and cared for in such a...
meaningful way with very small steps by lots and lots of people.
But your point, if you are diagnosed and you feel alone, ask your team, ask your surgeon,your oncologist, whoever's telling you, is there a social worker?

(13:26):
Is there a support group?
What is in the community?
This is unfortunately, and may it not be in the future, a relatively common occurrence.
And there are probably people who can tell you, I've walked this path and I don't knowthat it'll be the same for you, but I'm here.
And I think it's important to know, though, that everybody's experience is not the same.

(13:48):
Everybody's path isn't the same, because as you yourself say, all these cancers can bereally quite different, and the kinds of treatments are different.
And you want to be careful.
You want the support, but you want to be careful about having lots of advice from peoplewho really don't know the nuances or the differences and the types of cancer.
well, my Aunt Sally had this, so why?
That's not necessarily helpful.

(14:10):
And a lot of people do go to the internet and look at things and some of the things theylook at are good and some of things are not.
But I think key messages are cancer is not an emergency, it's an emergency because youknow about it.
You have the time and it takes time to get to understand what the biology is so that youcan really have a program of care that's tailored to the type of tumor that you have.

(14:31):
The old standby is you do surgery first, then you figure it out and then you give thingsand
hope for the best.
But we are trying to do things differently now so that we can figure out what kind ofcancer it is.
And if it's a small kind of indolent or what I call a shoplifter cancer, then maybe allyou need is surgery.

(14:52):
And maybe you don't need radiation.
It really depends on the type of tumor, what it is.
Or maybe you can have, if it's precancerous, there are options for active surveillance andthere are trials for that.
trial called RECA-SDCIS.
So there isn't one size fits all.
So no one size fits all.
Wait and get the data.
Make sure you ask questions.
Make sure you say, well, is there a clinical trial that could be right for me?

(15:14):
Because that could be part of care.
If you have a larger tumor or a tumor that's growing faster, in particular, those are thecancers where you want to do the systemic therapy of the whole body therapy first.
Because in the course of care, you learn whether or not that therapy is working.
And if it's not, you can change courses.
We have a big trial called the iSPY trial, which allows us to start with novel therapies.

(15:38):
And if that doesn't work, we go on to the standard of care that's best for your particularsubtype.
And if that doesn't work, then we have something else.
But it gives us an option to start to drive some of these new therapies into the treatmentearlier.
And if you get to a complete response, we know you're going to be okay.
And then you don't have to worry about it.
Or if you do have a lot of disease left, then we can change course and do something else.

(15:59):
So knowledge is power.
And I was just gonna say, when you go to an appointment, it's good to record thatappointment.
At UCSF, we have a program where we provide decision support and our patient support corewill come organize your questions, come in and take notes for you and record the

(16:20):
conversation.
So sometimes when you get nervous,
You forget what questions you were going to ask.
So if you've prepared those questions ahead of time, and you can do this yourself too, youknow, if the service like that isn't available, but to have someone help you ask questions
and have someone take notes for you and always say, can I record this?
And everybody should say yes, right?

(16:40):
It's, know, because then you could go back and listen to it.
That sometimes doctors are not that comfortable having their words recorded, but most ofthe time nowadays, and in fact, there are services in New York where they actually buddy
you up with somebody who's had, who's been a survivor or lived through the cancer.
So you have an experience, not unlike you, Joel, who lived it because of your mother thanyour sister, but where you can get some insider information and

(17:07):
To me, it goes beyond knowledge, it's wisdom.
So a lot of times when I diagnose cancers in my patient, including breast cancer, I willfind somebody, if they don't have anyone, I will find someone that I know, either through
my personal relationships or professional, to say, would you mind talking to thisparticular person, because I think she's similar to where you are and has a diagnosis

(17:30):
that's similar.
Even clinical trials are not necessarily understood.
in less sophisticated areas.
New York and California are exceptions, but there are plenty of folks in between New Yorkand California who have trouble sometimes finding sources of information that both comfort
them, but also give them a helping hand.
And I think that's what I hear you saying that you try to do, set up.

(17:54):
That's right.
That's right.
great.
And really to make sure if someone is young, were you thinking of having children?
Is this something that you want that you can freeze your eggs and prepare for that if youneed chemotherapy?
That you can preserve that option if you want.
Even if you're having just hormone therapy, you may need to do that for two or threeyears.
And if you're 35, that may not be, you may not still be fertile at 38.

(18:16):
So these are questions.
that you have to ask.
There's certain things you want to ask if you're young.
There's certain other things you want to ask when you're older.
Who's your support?
Who can help you?
These are the kinds of things that Joelle is trying to make clear.
And not everybody has that experience of knowing it so well.
The other thing is that, you know, everyone wants to know what caused the cancer and whatdid they do wrong and are they being punished?

(18:38):
You know, that's not how cancer works, right?
And it's, you like to say that, you know,
forget who Arthur Anderson turned into, you know there's a eccentric.
That's right.
So like the thing is if you, you know, what do they say?
You can have a 2 % accounting error.
You know, if your body had a 2 % accounting error, no one would live past a year of age.
So, you know, if you've got billions of cells dividing all the time in those particulartypes of tissues where there's cell division all the time, which happens, you know, every

(19:03):
menstrual cycle, you know, things grow and various things like the breast, prostate, allthese things go on.
That's why cancers are more common.
and these kinds of organs.
And it's not because of X, Y, There are things that people can do to reduce their risk.
But sometimes if you have an underlying risk or something goes wrong, you can't alwaysavoid it.
So there's nobody to blame.

(19:25):
There's, okay, what can I do about it?
How do I protect myself best about it not progressing?
how can I also make sure that I don't let the fear of this crush me?
That's right.
I think that's right.
I remember asking you in my first appointment with you, we had a moment, there were twomoments I remember besides when Dr.
Essman walked in.
One was she was looking at my MRI from six months earlier and my MRI from when I wasdiagnosed.

(19:50):
And she looked at it and she turned to my oncologist, Dr.
Chen and said, this is so cool.
And I said, cool?
What's cool?
What was cool is it totally wasn't there in June.
There wasn't a glimmer.
and it was there in January.
And I actually do think that's cool because it was found, right?
So I always said like, I'm in the 10 % that our cancers are known genetic.

(20:13):
Okay.
And that meant, and I had a very, very high lifetime probability.
So none of this was shocking, but it was great that because of my risk,
And because it would not, right.
you know, that's what I'm saying.
You gotta know, you what's the underlying risks.
So you didn't, what you don't wanna do is find a surprise.
It would have been very different if on the pathology, I said, oh my gosh, you have acancer.

(20:37):
And I wouldn't have been able to have given you a treatment ahead of time that made it goaway so I could tell you, okay, don't worry about it.
We've cured that cancer and now we've taken away your risk of getting a second cancer.
Those are things that bring people comfort.
That's why.
That's why we've changed the way we do therapy.
don't, you know, I've been working for decades to try and change the frame of people sothat we can have maximum information to help people get the best outcome.

(21:03):
And also, you know, if the, that first four cycles of therapy worked, you didn't have tohave anything more.
You didn't have to have anything more toxic.
So you can, that's what individualization of care is.
And the kinds of trials that I try and develop,
are ones that allow us to individualize care at the same time that we are testing newthings.
And also, I think it's illustrative.

(21:24):
know, Joelle knew that she carried a mutation that brought her risk.
Most people don't have any idea what their genetics are.
And what we usually do is say, if you have a family history, then let's test you.
But in fact, that's not a great test.
We run a study called the Wisdom Study where we are trying to start the whole process ofscreening by understanding what the individual's risk is.

(21:48):
If we don't treat all cancers the same and people don't and have different risk factors,why in the world will we screen everyone the same?
So what you want to do is start with risk and then based on that risk, you figure out whento start, how often to screen and with what modality and then figure out if you're at high
risk, what can you do to lower that risk?
That's called the wisdom study, but everybody gets genetic testing.

(22:10):
And what we found in wisdom 1.0, we're now in 2.0, what we found in 1.0 was that 60 % ofthe people with mutations did not have a family history.
And there's lots of reasons for that.
People don't always know their family history.
People can come from small families.
Some people are adopted.
Maybe people don't talk about things.
even for someone with a BRCA1 tumor, 40 % didn't have a family history.

(22:33):
Now part of it was that we were starting to screen at 40.
And that's one of the reasons why we started at 30.
So in the iSPY trial, which is for people who have stage two and three aggressive breastcancers, 85 % of the people in it who show up in that type of tumor were not screen
detected.
Their cancers weren't discovered on screening.

(22:54):
So what that tells you is that's a different kind of cancer.
Probably not doing a particularly good job of finding those cancers.
with the wings uncovers Laura because I know that
find their own cancer with hands.
So like I put my hand on my breast or I fell and all of a sudden I fell at this or youhave a symptom, my breasts look funny, you know, all of a sudden.

(23:17):
And these are in women who had had prior mammograms within the year.
Right.
Often, or the average age is 46.
So that means a lot of people are young.
For the people who get cancers in their 30s, I mean, it's not as common, but it happens.
Right?
And there's more of it.
And in fact, you know, it is, and when you are young, you tend to get more of theaggressive, the more aggressive cancers are more frequent.

(23:41):
They're more like, you know, 70 % of
So now the wisdom study, which is open to anyone in the country, regardless of insurance,regardless of where they get their care, it's all an online study, starting at 30.
Because what we want to do is find the people with the highest risk.
Find the people who either have an inherited change in one of these mutations or genes, orthey have something called high polygenic, with poly, meaning money, genic genes risk.

(24:09):
turns out you inherit lots of other genes.
That's what makes your hair blonde or dark, your eyes blue, green, or brown.
Your genes direct everything.
there are thousands of genes with slight variation, this, that, or the other, but they'recombinations, and we're increasingly learning more, that can predispose you.
Yes, I can actually talk about myself and my family in that way.

(24:32):
But before we leave this topic of the genetic variants, one of the comments that Joellewrote in the book was the BRCA1 gene was woven into our DNA fabric like an unwanted
heirloom.
But then you go on to admit that you did next to nothing about it.
Was there a reason that you did next to nothing about it?
Okay, let's talk about the continuum of next to nothing.

(24:55):
And so first off.
So when my sister was diagnosed, I was 40 weeks pregnant.
And I did what every daughter of a cancer patient or sister does.
I called my doctor and said, this just happened.
And my doctor said, go to the breast center and get a mammogram right now.
I was like, I'm 40 weeks pregnant.
She's like, go.
So off I meet, and I meet another doctor that's in the book, Dr.

(25:16):
Harriet Barofsky.
By the way, I'm a really small person, Florence.
Like, I'm 5'2", so when I was 40 weeks pregnant, I was massive, like, very odd-looking.
And so I show up, Harriet greets me, brings me back, I said, how are you gonna seeanything?
And she's like, well, I'm gonna see a lot more than I'll see in two weeks when you deliverthat baby, so let's go.

(25:37):
And Harriet became, for 20 years, my breast.
breast imaging doctor.
So I was doing, and she set me up, her, at this point, we were talking about 2003.
So she started me with mammogram ultrasound and MRIs.
And then later she said, I want the MRI to move six months out so that we're looking atyou every six months.

(26:00):
So that was her strategy for someone with my profile.
And I decided after my daughter,
I decided after a biopsy to get the blood test.
Turned out I did have the gene.
And I said, okay, after I had my third child, I said they recommended asalpingo-uforectomy, which for people who aren't medical who might be listening is the

(26:21):
removal of your ovaries and fallopian tubes.
And they said, not only will that reduce the risk of ovarian cancer, which comes withBRCA1, but it should half your risk of breast cancer.
And my sister-in-law,
Dr.
Heatherstein, also in the book, she basically got on the phone with me and said, Joelle,from a, he's, yes, that is a huge improvement and you should do that.

(26:43):
You just should do that.
So yes, it means you're gonna be in menopause and there are hormones and there are doctorswho can help you through that.
And interestingly, I had read the study that you talked about in last week's episode andyou know, that.
said, but hormone replacement therapy is dangerous.
And the surgeon who did the salpingo-uforectomy, he said to me, yep, that doesn't apply to38-year-old women.

(27:03):
That's not you.
You would have these hormones, so let's keep you on hormones, at least for a while, andsee how you do, because of bone density and cardiac, and I don't need to tell you, you're
the expert.
So I did that.
I did the salpingo-uforectomy, and I did aggressive screening with the theory
up until I was about 52, that if we found it, was going to be early because we werewatching.

(27:27):
I I couldn't see a physician on my team for anything without getting a breast exam.
And I was doing breast exams.
one of the things I want to say about your ice, what you talked about with Ice Spy andwith younger women is too many of the women I talked to were told it's nothing.
They said, I feel something.
And a doctor says it's nothing.
My sister was like, I feel something.

(27:47):
The doctor said it's nothing.
It'll go away.
A month later, it was still there.
She's like, you know what?
I want nothing out.
And I don't know.
Maybe you two can explain why I was like a pin cushion with biopsies.
People thought they saw anything they were going to biopsy.
they knew you were a bracket carrier.
You came later into the diagnosis and did your family know at some point?

(28:08):
Your sister was early, your mother was even earlier.
And doctors tend to want to make light of things unless it grows into something serious.
Most of conventional medicine, which is not the medicine standard of care I practice, Iactually practice a form of precision medicine and of one because just like your belief,
Laura and Joelle now, each one of us is unique.
Even my twin sister and I, and I'm an identical twin, we have a different history, we havedifferent conditions, and we live a different life.

(28:35):
My whole family gets breast cancer.
All my female cousins and I have 27 of them and my mother was one of eight.
And it turns out that genetic variants go beyond BRCA and there's a lot we don't know.
For example, I don't detoxify well.
And so that is probably one of the reasons that it's an interaction that I have been madeaware of by genetic experts, Dr.

(28:58):
Laura Hausman Cohn out of Austin.
who does work in genetics, and we screen all our patients with 1,700 gene variants, and wecan help them sidestep certain choices and ways of living to minimize the risk, to help
them detoxify, if that is the issue.
Because BRCA, Laura, correct me if I'm wrong, is less than 1 % of breast cancer.

(29:19):
It's, I would know actually of the people who get breast cancer, it's about 10%.
Of the people who have locally aggressive or stage two, three breast cancer, it's about20%.
I was always under the impression it's a small diamond.
In the population, if you take the population, it's 1 to 2 % of the population has it.
But it's important to know who that 1 to 2 % of the population is, because there's lots ofthings you should know, lots of choices you can make.

(29:46):
It changes the way you screen.
You might want to think about prophylaxis.
Maybe you don't want to think about, you you can remove your breasts if you want, youdon't have to, but at least then you should be screening very carefully.
And now we have better tools, right?
We, you can alternate, you know,
Contrast screening exam is probably...
You're talking about MRI or magnetic resonance imaging?

(30:07):
MRI and magnetic resonance imaging alternating actually with contrast-enhancedmammography.
Those are different because you can see calcifications, do something else, not everybodyhas that, but increasingly that's going to be around.
And I think, you know, the MRs are going to get faster and easier and, you know, these areall the things that can work, but there's also going to be opportunities for prevention.

(30:27):
One of my colleagues from Austria is working on anti-progesterone therapies that look likethey're going to be risk-reducing.
for women who have these BRCA1 tumors.
that we, know, PARP inhibitors are being used, we in iSPIRE are testing PARP inhibitorsalone or alone with DNA damaging agents to see is that sufficient.
If we actually have a really great treatment that isn't too toxic, it's going to changehow people think about wanting to do prophylactic surgery.

(30:54):
You know, people, right?
So these are all the things that you should know.
That's why the more you know, the better it is.
People used to say, we shouldn't at the beginning.
when
BRCA1 was cloned in 1996, BRCA2 in 1997.
People say, oh, don't find out because then what can you do?
Or you have to have a prophylactic surgery.
You don't.
There are choices.
again, you just have to know what are my options and what are the consequences.

(31:18):
those are the things.
in the wisdom study, we find people who have that, and we counsel them, and we look atthem.
People make all kinds of choices.
But back to the, mean, a very important message for your listeners is if you had amammogram that was normal eight months ago and now you feel a mass, don't assume it's

(31:38):
nothing because I had a normal mammogram.
50 % of women still find their own cancers.
So it's be very aware of your body and you're the, if someone comes in, a physician sendsme someone that they think has a mass, I pay the most attention to the patient who says,
you know,
I've always examined myself, I've noticed something different.
So how, I think we want to tell women, and I know it's rather basic, not for us, but allour listeners may not have experience like you, Joelle, and certainly not all of them are

(32:09):
physicians.
So what's the best time of the month to do a self-exam?
And what's the best way to learn about how to do a self-exam, breast exam?
So I would say that the best time, okay, so I think most people are afraid of doing selfbreast exam because they're like, my gosh, breasts are lumpy bumpy.
Well, actually, yes, that's true.
Most breasts are lumpy bumpy.

(32:29):
That's okay.
The UK actually had a great campaign, Be Breast Aware.
And you don't have to make it some giant thing.
know, if you just to remember it's the first of the month or like a week after yourperiod.
when your breasts are the least tender.
You just raise your arm up, just move your hands up and down over your breast, and justget to know what your breasts feel like, because the most important thing is change.

(32:52):
And you're the best at figuring that out.
yeah, that's always been there.
no, that is different.
That's what you want to bring to somebody's attention.
And that's just, it takes a minute.
You don't have to do some 30 minute exam.
You have to do a one minute.
even a weekend after your menstrual cycle starts, when the follicles start making moreestrogen, is a good time to do a breast exam, I think.

(33:14):
Yeah, I think the best time to do it actually is when you remember.
Okay, that's very practical.
can agree.
I mean, you can do it the first of the month.
You can do it when you're in the shower.
You know, you're already naked.
already putting your arm up.
The water makes you...
Just be aware.
You know, just be aware.
So Joelle, turning back to you, I wondered when you heard that you were BRCA positive anddid you understand the connection between that and your Askenazi Jewish heritage?

(33:42):
Is that something that you were made aware of prior to that?
Yeah, the geneticist, I'm sure she would have a funny story to tell.
So I was in business school in 1996 when the BRCA1 study was announced.
my mother was the first one to ever have breast cancer.
And I looked at it and I said, we're Ashkenazi Jewish, because that was in the study.
My mother was 36.

(34:02):
Well, that must be us.
I mean, again, totally wrong, or turned out to be right, but not.
was not necessarily gonna be right.
I know plenty of Ashkenazi Jewish women who have a lot of breast cancer in the family andare not Brocka 1.
So I just said, that must be it.
I said, that must be it.
And again, I believe you have to advocate for yourself and you have to build arelationship with your healthcare team.

(34:25):
So any new physician or nurse practitioner who saw me was going to hear, my mother hadbreast cancer at 36.
Let's just start my, and she is my genetic mother, like I'm not adopted, 36.
I just want that at the top of the record.
And let's go on to the ear, nose and throat exam.
Like, whatever.
I just wanted them to know because I wanted the best eyes, the best hands on high alert,including my own, right?

(34:51):
Including my own.
And,
But not being obsessive about it.
In your case, it sounds like while you were in the cancer trenches for more than fourdecades, beginning with your mom, you seem to have come through it in a way that gave you
the wisdom to be calm and face your diagnosis, you know, realistically.
Like, what do need to do?
So maybe I'm also a bit naive.

(35:11):
I don't see anywhere near what the two of you see.
I have a very small sample size.
But it's pretty good.
The people I know have done really well.
Well, actually, that's very interesting.
There are people who come from families where everybody survived, and they have a verydifferent attitude from the people who come from families where most people died.
That makes people a lot more anxious.

(35:32):
I agree.
That's why my family seems to be less concerned, even though they worry.
We had one relative, but we related to her paternal side, who died at 36 with widelymetastatic breast cancer.
She was actually seen at NIH and had some chemotherapy and some surgery, and yetsubsequently succumbed with cancer myths around her entire body, leaving young children

(35:53):
behind.
But the rest of my family, on my mother's side, also has very commonly diagnosed, andnobody has
died with breast cancer or because of breast cancer.
Now, I want to reorient people's understanding about the Ashkenazi Jewish thing and BRCA.
The reason why we made that association with Ashkenazi Jewish women is because they werethe first, because some of the first testing of the BRCA gene was done in the Tay-Sachs

(36:20):
gene bank, which was all Jewish women.
So it turns out that 1 to 2 % of Jewish people, because it can come from your mother oryour father, carry that gene.
Well, guess what?
If you are English, there's an English gene.
If you are Nigerian, there's the Nigerian gene.
Black women for a long time thought, well, I can't possibly have a genetic mutation.
That is not correct.

(36:41):
Being Ashkenazi Jewish does not put you at risk for having a BRCA mutation.
That's really important.
And one of the reasons why we are trying to move the idea of population-based testing outis because
The more we test, the more we understand we're going to find in other populations whatthose other genes are.
genetics is really the study of populations and population migration and what happens topeople.

(37:07):
so you go look in the Caribbean, in the Bahamas, for example, it's like a 20 % risk ofhaving a BRCA1 gene where it is an...
Jamaica it's like less than 1%.
So it's, and probably it has to do with families that migrated one place and you know,like people need to be disabused at the fact that, I can't possibly have that or I can't

(37:31):
have breast cancer because I don't have a family history.
Okay, definitely not true.
So this is one of the things that we're trying to understand and say, look, it's just goodhealth hygiene.
Know your risk.
So let me just see, make sure I understand, because this is the first I've heard of itexplained in this fashion, although I see the same through a different lens, for example,

(37:52):
diabetes.
There's tons of variants of diabetes in every population, and it's actually different inevery group, ethnic group.
So with breast cancer, in the fact that it was uncovered in the first group of women thathad Tay-Sachs or Inter-Tay-Sachs Bank or...
were studied, is that why a god associated with Ashkenazi Jews, but yet it's the samegene, the same exact mutation exists in other parts

(38:18):
So there are probably over 500 mutations in the bracket gene.
There are three common mutations in the Jewish population.
Those are the ones that tend.
And so don't be fooled by something like if you get 23andMe and they do those three genes,they say, you have it or you don't.
That's not correct.
They've tested for those three.
Does not mean you don't have anything else, right?

(38:40):
They're not testing for all 500.
So that's why we used full sequencing plus looking at
the many genes looking at the whole genome to try and understand and take advantage ofthese other things that we're looking at.
I mean, we hope all of health will be that way.
Everyone gets a deck of cards, right?
And some people get the king and queen and some people don't.

(39:02):
I am so aligned with that and why I practice precision medicine at every level, looking atdata and applying it in a personalized way and recognizing each one of us is unique.
In the diabetes world, there are over 2,000, I think 2,500 gene variants that give youvarious forms of sugar, know, carbohydrate management that leads to some form of diabetes.

(39:24):
So you already told me...
you can't really be helpful.
The cost to getting that information and access to some of that workup, whether it'spossible or not, means it may be a hard reach for most people.
Obviously, we're in the part of the population that seeks medical care and does itappropriately.
So that's a hurdle, another hurdle too, for some of those populations who can't get care.

(39:49):
It's one of the reasons why in the wisdom study everything is free.
The wisdom study is open globally or nationally to anybody in the United States.
don't have to have insurance.
just fill out what would be the site that people would go to to find it.
Wisdomstudy.org.
Women informed to screen depending on measures.
Can men be screened as well?

(40:10):
Because there's a population of men who get breast cancer as well.
There are, but even that risk is lower than the average risk of a woman, even if you had aBRCA gene.
So it's just not reasonable to be screening men because that risk is...
I wasn't aware of it and it's one of the best things I think it sounds like you'veaccomplished so much at UCSF Breast Care Center and I think Joelle you went there as soon

(40:34):
as your diagnosis was made or subsequent to your diagnosis or were you under the watchfuleye of the physicians there?
I was not.
did go, it was two days after diagnosis that I had the opportunity to meet Dr.
Esserman and her team.
By the way, when I did do the genetic test and they said, and I did it mostly so I couldstop having biopsies because if it was negative, I didn't have to be screened like that

(40:59):
because we knew that's what the risk that was, we were correlated.
And so when they told me, well, you came back positive,
I was like, my poor parents.
Like, that's literally what went through my head was like...
people have guilt thinking of I pass that on, right?
my mother did.
And I said to her, I would still rather be your daughter with everything I got.

(41:20):
Like, feel no guilt, no moment.
We have no idea what's in that whole genetic soup or sequence that you both are talkingabout, right?
But I'll take what I got.
And that included Braca and being vigilant.
And in any population, I think it's important, like, yes, not everybody, unfortunately,can be screened, although if you join Wisdom, there's lots of stuff that's great.

(41:41):
But you always have your hands and you must know your body.
Let me ask you, you have three children.
How many daughters?
I do.
But one daughter for sure.
One daughter.
What is your advice to your daughter now in terms of her risk given the notion that it'sobviously in your genetic soup?
So the first is every time you see a medical care provider, you tell them that you have astrong family history of breast cancer and it's here, here, here.

(42:07):
You share information.
Number two, you know your body.
You touch your body.
You get familiar with your body because you will be a phenomenal scout for any issues.
I also tell them this is not a look at our family.
I hope
I hope, I really like the things Dr.
Esserman is doing.
I hope my daughter and my niece are in the group that we come up with a way that justdiverts this and they never have to face it.

(42:34):
From your mouth to God's ears, I'm good with that.
A, every day you take a breath, there is risk in your life.
That is what comes with living.
You get in a car, whether you are driving it or a passenger, there is risk in your life.
So the fact that she may or may not have the BRCA1 gene, it is just one of many risks inyour life.

(42:55):
And the good thing, as ridiculous as that sounds, about the BRCA1 gene is we can identifyit.
And there are protocols.
And there are phenomenal researchers, scientists, doctors who are committing their livesto preventing, detecting
and treating this as early as possible so it has as minimal impact on your life.

(43:17):
Like, I'll take that bet.
And she should too, and she does.
so of all the things she's anxious about, she's a senior in high school, I assure you thatbreast cancer in BRCA1 is down on the bottom of the top 10.
It's not...
has even more experience than you do.
And in the next 10 years, we'll come up with much more precise treatments and things thatare perhaps non-toxic.

(43:38):
But it's also important to know that even today, no matter what has happened, it ispossible for people to understand, I do not have to pass this gene on if I don't.
Thank you.
Reimplantation examination of embryos.
can embryos and you can decide, you know, not to choose an embryo that has the BRCA gene.

(44:00):
you know, as we say, everyone's got their own deck of cards and that's just the way lifeis, right?
But there are things you can do and you don't have to take action on it, but it'simportant to know that you can.
And I also believe that there are going to be, you know, anti-progestins and things, eventhings like methamphetrysone actually look like they're going to...
be effective in reducing the risk of breast cancer.

(44:22):
widely available?
No, no, These are in the testing setting.
we actually must be very vigilant because there is a political agenda in this country thatis against testing things that have to do with reproductive health or birth control
innovations or hormonal interventions.
And this is a problem because we need better tests.

(44:45):
should be, you know, I've started a new movement, a new
organization called Rise Up for Breast Cancer and we had a big for our first meeting lastyear really trying to think about well, okay, what can we start to do about really
seriously reducing the risk of getting breast cancer and every woman, you know has youknow times at which You know, there are hormones might be manipulated from cycle control

(45:06):
birth control IVF, you know in vitro fertilization postpartum weaning and postmenopausalhormone replacement
we can be thinking about how to organize those interventions with an eye towards reductionof breast cancer risk as well as improving people's sense of well-being.
And if you can do two things at once, how great that is.

(45:27):
But we haven't used our imagination or our knowledge and science to really push thatagenda.
And that was actually one of the Spark Awards that we funded was Mephapristown for Breast
for BRCA1 carriers and one of my colleagues from Austria has some really beautiful datashowing that that might be very risk-reducing, but that also makes you think about other

(45:48):
things.
anti-progestins might, for people with very dense breast tissue, know, becauseprogesterone is one of the causes of dense breast tissue, might be really a great way to
reduce risk.
We have to really invest in thinking out of the box and working.
to the chance of getting breast cancer.
I'm tired of hearing, I don't want to see us at 300,000 or more breast cancers diagnosed ayear.

(46:11):
It's not necessary.
We can do better.
And we must.
turning a little bit or pivoting to the fact that Joelle, you said the breast cancerreally didn't keep you awake at night, but the idea of a mastectomy and removing your
breasts did.
And you went to your sister-in-law and got advice from your sister-in-law.
What ultimately made you decide to opt for a double mastectomy?
Yeah, the reason both my mother and my sister had complications post mastectomy.

(46:36):
So I did see some of the implications and I did not view a mastectomy as a trivial.
surgery, which it is not.
Right.
in any case.
I don't think we should minimize that when we say, just have a prophylactic.
Like that's a major surgery.
totally.
And my mental state was I'm well-screened.

(46:58):
I don't worry about this on a regular basis.
And if they find it, they'll find it early.
And then I will do a bilateral mastectomy.
Like I didn't have any, there was no question in my mind to the point where when I starteddating my husband 28 years ago, I told him that.
I said, just make sure you're signing up for this particular journey, because if this forkin the road, has some unusually high probability happens, I'm taking the right.

(47:23):
They're going.
Enjoy them while we have them.
And I did things to reduce my risk.
I don't smoke.
I don't drink.
I exercise.
I nursed my kids for a year each, which I enjoyed.
But all of that also was risk reducing.
And sometimes the cards come up.
So why did I decide to do it?
I had yet another biopsy.
And every time I had a biopsy, did go, that brought me to the dark place of, is this thetime?

(47:46):
Will this be the time my number comes up?
And I was 52, and my sister said, why don't you just explore what your options might befor reconstruction?
Because that was really where the complications were for my sister and my mother.
So I met with a plastic surgeon that's in a group that specialized in the deep.
And he both told me I didn't have cancer because he had the biopsy results and told me acouple of things.

(48:10):
He said I was a good candidate.
He also suggested he was like, look, it's a big surgery and you're very healthy right now.
Why would you want to do this?
As you get older, you are by definition likely to be less healthy than you are right now.
That may not be the case with some of the work you do, Florence, but aging happens andit's harder to recover.
if you're less virile.

(48:31):
And so he said, why would you want to wait?
And then my sister-in-law said, and why would you want to put your family and yourselfthrough chemotherapy?
And so they both made this case.
I said, and then Heather, she said, and by the way, if you do it prophylactically, youcontrol the schedule.
And how great would that be?
You can decide when this is going to interrupt your life.
I said, that suits the little control freak in me.

(48:53):
And so
You know, I scheduled it out and I even did a reduction because they were worried about...
Well, yeah, can if there's, you so one of the things that has really improved breastreconstruction is the ability to save all of the skin envelope, including the nipple skin.
Some people save the nipple, but really it should just be the nipple skin, especially ifyou're a carrier.

(49:16):
But that if you are large breasted, doing you can't both save all of the skin and do it atthe same time.
So you have to reduce the size in the skin envelope, then let it heal.
and then go do that in six months.
I actually did it in three, but I did the, was planning to.
The game plan was to do that in three.
What was the point of the nipple?

(49:38):
Can you state that again in case some of our listeners would like to understand?
it's really important to know.
We used to always take off the nipple.
So first it was, you can't do reconstruction at the same time.
There's a lot of myths in medicine, a lot of people think, this is the way it is.
So we used to do this mastectomy, take off everything and then you'd be flat.
And then we'd go back and do reconstruction.

(49:59):
Quite frankly, they were not very attractive and they never looked natural.
And then we started trying to save most of the skin and...
taking the nipple and I was giving a talk to a group of women and I was explaining why wehad to take the nipple and they said, well, how do you know?
I said, well, it doesn't survive.
They said, well, have you tried it?
How do you know?
And I thought to myself, this is in 1998.
went, oh, actually, you know, I haven't really done that.

(50:23):
We really don't know.
So I was trying to think about it.
I, you know, there's a early on.
So I spent about six years developing and testing all these different techniques.
And in fact,
I started it because there was a woman with a BRCA1 cancer.
Everyone in her family had died.
And she, you know, I was like, okay, why these terrible cancers came up like this?
They were absolutely, you know, rapidly lethal.

(50:45):
And I said, you know, and I said, well, would you be willing to do it if you could saveyour nipple?
And it looked the same.
And like, I looked back at it at the time.
So I was doing a registry and getting consent.
But I really didn't know if that was going to hold.
I was perfectly honest.
And I said, I'll tell you what, I will work to figure out how to save all that if you willconsider getting rid of this tissue that's trying to kill you and everyone in your family.

(51:14):
And it worked.
And the thing that's so amazing is even if you reconstruct the nipples, the shape and sizeof the breast just doesn't look normal.
create that kind of ski slope look that most people have.
And it is one of those things that is over about a five-year period of time, we figuredout how to really do it well and not well.

(51:38):
over a long period of time, we've really worked on trying to do quality improvement tofigure out how to do it better.
mean, there are some risks.
No matter what you do, you can do the same operation 100 times and things go wrong.
That's just the way it is, right?
terrible when it does, but that's the way it is, right?
So, you know, so, but that's what I'm saying.
You can, you can save the nipple skin.

(51:59):
And it absolutely, there's almost nobody that we can't do that on.
And if someone tells you it can't be done, that is incorrect.
Go get a second opinion.
that is a wonderful insight.
And I just want to mention that besides reproduction and being able to do pre-implantationgenetics on the embryos or the eggs, there is also a concern about nursing that has come

(52:19):
up in some of the younger women who talk about wanting to have children.
Maybe they had children already and they nursed and they're thinking about futurechildren.
Maybe they've put away eggs so that they can carry.
excuse me, they can actually conceive post surgery and intervention.
What has been your experience at that end?

(52:41):
so one of the first things that we ask people who are young, whether have children orhaven't had children, is having children important to you.
And anyone who's going to have a type of therapy like chemotherapy or even extendedhormone therapy that would delay their time of conception to a time when they wouldn't be

(53:01):
fertile anymore or where the treatments themselves can increase infertility, then
you know, you have to say, that important to you?
And do you want to say, preserve your eggs?
And the truth is that it is safe to take the time, even if it takes a month to harvestyour eggs, you can do it and that is safe.
It's important for people to understand what your options are and that, you know, as Isaid, breast cancer is an emergency because you know it, you have the time to do the

(53:29):
things that are important.
Nothing is worse than having that door shut for you.
That is very important.
think nursing is a thing.
Like my sister chose to have a lumpectomy and radiation to preserve the possibility thatshe could nurse from the other breast.
And then ultimately, after she'd had her two children, she did do the harvesting and shedid, they were using, is it lupus?

(53:51):
Lupron?
yeah.
January channel.
Right, she was in a early study of that.
So to Dr.
Esserman's point about ask about clinical trials, she was in that.
It preserved her fertility.
She had two children.
And then after her second child met with her oncologist and said, if this comes back, whatare my options?
And the oncologist said, not great.
And again, this was probably 2010.

(54:13):
So not too far away, right?
it's amazing how fast things are changing.
So she chose to do a bilateral prophylactic after she had nursed her children.
So she did the treatment, the chemo, the lumpectomy, the radiation.
She did nurse.
She could only nurse one side, the other side.
She's like, it's trying, but it's just not getting there.
But she was able to have some of that experience.

(54:34):
And then she elected to do the more extensive surgery.
Yeah, so that's wonderful.
I think it's a good point that we make if you have a bilateral mastectomy, even if youconceive subsequently, you're unlikely to be able to nurse a child if...
bilateral mastectomy.

(54:54):
You can't, know, no, no, exactly.
bilateral mastectomy, you have no breast tissue.
Let's hope you can't nurse after that.
There are some hookups even for men that feed the nipple and I don't know if you've everseen this but when I was at NIH there were some gadgets and if you let a baby suck there
were some men who wanted to try to nurse after a while.

(55:15):
Sometimes the breast tissue seems to respond to that because it's my background inreproductive endocrinology.
Let me move on because I'm afraid we're going to run out of time.
Yeah.
I have to let Dr.
Esserman go.
So I can stay a little bit longer, but I think Dr.
I'm happy to come back another time to answer other questions and talk about, and yeah, wecan actually talk about Rise Up and talk about the whole idea of hormone replacement after

(55:38):
breast cancer and what are the pros and what are the cons and what are the things we knowand what are the things we don't know and must continue to study.
fantastic.
Thank you so much for having me on, Joelle, as always.
Great to see everybody.
All right.
I'm Charlie.
So Joelle, I want to wrap up, but there's not too much left.
But because I'm a baseball fan and it was Yankees, now it's Mets because I have a grandsonwho's a crazy Mets fan.

(56:01):
So we actually started a podcast, Good Morning Mets fans.
I encourage you to look for it.
He's a natural.
And I love your baseball analogies in the book and the terms you use like curveball, firstinning, dugout, camaraderie, home run for the chapter headings.
Why baseball?
From your perspective.
So a couple of things.
One, I always thought of cancer as a curve ball.

(56:23):
Just the metaphor made sense.
But when my second boy was two years old, we lost him in a playground.
Terrifying.
And only found him by spinning around and seeing this blonde child crawling up thebackstop.
And he was just called to baseball.
And turned out he was
quite good at it.
He's playing at the collegiate level now.

(56:44):
And he, I have watched more baseball than I ever intended to watch.
And people say like, what's your favorite team?
I'm like the one my boy is playing on.
That is my favorite team.
But he is a hitter, like he's an outfielder, he's a hitter.
And so, so I asked him, you know, what went well with that at bat?
What did you want to do, et cetera?

(57:04):
And he started talking about something called approach.
And I realized I was doing something very similar in the corporate world.
And ultimately, I did that with my cancer, is that I had an approach, a mental game that Iwas playing and preparing for each appointment, for each infusion, for the surgery, for
post-infusion days.

(57:25):
And when you unpack it, approach, it's like preloading the frontal cortex, right?
It actually makes us calmer.
It makes us a better listener.
It makes us more decisive because we've pre-processed some of the questions, some of theconcerns, and we've been able to sort through that surge, hormonal surge of reaction when

(57:47):
we hear something or think something scary.
We've got an approach.
So from that, approach is key in baseball.
And it turns out approach is key in cancer.
And I assume it's probably key in diabetes.
It is.
Approach is used formally in baseball.
That's an approach when your son shared that with you.
Absolutely.
Fabulous.
Yeah, if you ask your grandson, if you say to him, what was your approach for that at bat?

(58:12):
He'll say, wow, you know about that.
But it's everything from what pitch they're looking for, what's going on on the field,what they want to do with the ball.
It's a ton of sense and I remember giving a talk many years ago when my father passed,right after my father passed away and it was very hard for me.
And usually I don't design approaches.

(58:33):
I might design the way I think about an approach, but I don't lock in.
And in this case, it was such a hard talk because he'd always been at my talks that I cameup with an approach that involved using chocolate.
And it was a huge audience of women, which was
Fabulous.
It was the best talk I think I've ever given.
I had a line out the door because everybody loves chocolate.

(58:53):
But I framed the whole talk using chocolate and chocolate terminology.
You also mentioned the batting helmet, and I think that was about chemotherapy.
You needed a chemo course, which I know Dr.
Essam and Laura went through, that it isn't necessarily surgery first.
And then what's cold capping?
Sure.
Cold capping is a FDA approved innovation where there's a number of different devices.

(59:16):
Mine plugs into a machine that UCSF has that cools your scalp to just above freezing.
And it turns out that by freezing or just above freezing the hair follicles, they absorbless of the chemotherapy.
And the chemotherapy isn't for the hair follicles, but any rapidly dividing cell is a hightarget for

(59:37):
chemotherapy and your hair is one of those things.
So the cold capping reduces its uptake and preserves, can preserve a lot more of yourhair.
So I like to tell people, I don't know if we'll be on video or not, but like I had cancertwo years ago and like this is my hair.
I have a lot.

(59:59):
You didn't lose your hair at all.
I lost about a third, so I have a lot of hair.
I lost some, but I never needed a wig or scarves.
Now, other people do, even when they cold cap, and every protocol is different.
Grow back is the third that you lost.
that come back?
Totally.
Totally.
But people will tell you, it's like chemo hair grows back funny at first.
Like it's kind of saying, what did you do to me?

(01:00:21):
And then over time, it normalizes again.
so, you know, your life comes back to, it can be as similar to your old life, again, maybewith some different body parts.
I wanted to go back to the nipple preservation.
because you can get 3D tattoos, some women do beautiful tattoos over their breasts or whathave you, wasn't my thing.

(01:00:42):
It really was very comforting to know that once my body healed from the surgery, it wasgonna look a lot like my body before.
And like I haven't needed a new...
That's a preassuring, that's fantastic.
I love a part of your book, The Lessons Learned, where you summarize the takeaways fromeach chapter at the end.
Is that something that you also thought about that approach and how that would bemeaningful so people could walk away with what they needed to do next or what to think

(01:01:10):
about how to organize it in for themselves?
So it was deliberate, but it was deliberate from the perspective of if you're actuallynewly diagnosed, you may not want to read the whole book.
You may just want to read one chapter, one segment, because that's what's going on rightnow.
And you don't want to know what the whole story is because that's not where you are.
So I wanted to make each piece complete if that's all you read.

(01:01:35):
And if all you wanted was no stories, no anecdotes.
just give me the facts.
Then you read the conclusion at the end and there's no stories.
It's the summary of all of the summaries, right?
And because sometimes people don't want to hear any stories and that's okay.
And Florence, it's really important that people know like my experience, I was able tomake it a really happy journey, but there were times I was sad and mad and was angry and

(01:02:04):
And sometimes I didn't feel like being strong, and sometimes I didn't feel like beingpositive.
And it's okay for people to feel all of those feelings.
And what's important is if you care about someone going through cancer, you can give thema moment of happiness just by saying, I love you.
Can I take a walk?
Right?
You can't fix the cancer.
We have to leave that to doctors and all of that.

(01:02:25):
But you can send moments of joy.
And those little moments of joy actually release.
You know the forms they release, right?
Right?
And that boosts everything.
In fact, I loved your opening.
was going to ask you a little bit more about singing.
I know that Laura asked you if, you I think you asked Laura, could it be a duet, right?

(01:02:48):
And the song you chose was meaningful to both of you.
Where did the practice come from?
And what was the song that you actually ended up singing together?
So I think her practice, first off, Laura is just a big personality full of life.
And I think that she loves to sing.
And she's actually trained in opera.
So she could sing you an aria, right?

(01:03:10):
And that's fabulous.
And so it's a way of bringing herself as a person into the patient-doctor interaction andmakes it a lot less clinical without violating any ethical boundaries, right?
It just makes you human.
So I think that's where it came from.
For me, I've been singing my whole life as well.
I'm not an opera singer.
I wanted to keep focus on the days to come.

(01:03:33):
I knew that the days following surgery might be painful and uncomfortable and uncertain,but I also knew they were not going to be permanent.
And if I could keep myself focused enough, even having plans and
milestones to aim for that could say, might feel like crap tomorrow because they'veremoved my breasts, they've taken belly fat up, and I've had all kinds of things happen to

(01:03:57):
my body.
But in six weeks, in six weeks, I want to be on a plane going to watch my son playbaseball.
Like, that's what I want to do.
I can see it.
I can manifest and visualize it.
And that is Don't Stop.
So that's why we chose Don't Stop from Fleetwood Mac.
Don't Stop Thinking About Tomorrow.
Not going to sing it because they're very big on rights and I don't want to get you in anytrouble.

(01:04:19):
my husband recorded it.
We have it on video.
He sent it out to all of our family that were concerned as I was going into surgerybasically to say like this is going be a
You know that there's data about that and being optimistic and sharing your story thatshows that
that it's much more likely to survive if you can be optimistic and go to support withfamily, pets, there's data on many diseases in that, but particularly in cancer and breast

(01:04:46):
cancer.
So you had a lot of support, you were an incredible patient, and you were so active inevery step from diagnosis through surgery and follow-up.
Do you think people can take bits and bytes of your story and learn how to navigate, eventhough they're going to have their own experiences and background that they bring to the
table?
when they're diagnosed.
think not only do I think they can, I think they have to.

(01:05:08):
And the interesting thing, Florence, is I interviewed about 25 women for the book, and weincluded about 12 of their stories.
But everyone at the end had realized they started taking control.
They started making more of a plan.
They started owning.
And this is the crazy thing.
None of us want cancer, like nobody.
And all of us felt like our lives were better afterwards.

(01:05:30):
maybe with different body parts, because you know cancer is the great clarifier, right?
When you're facing cancer, a whole lot of other stuff is very clearly small stuff.
I'm sure you have this.
definitely do.
I had a brilliant woman who was a friend and a patient at one point, and she was a COO ofa very well-known company, and her husband, and there was a lot of cancer in their family,

(01:05:52):
a lot of breast cancer.
And every time something came up that was disturbing to them or to me, because I workedwith them, her husband in particular, he's a lawyer, they were both brilliant.
And the line that he always uses, it is in cancer.
And so I think it's also the great unknown.
It does level you because you go through it and once you're through it, you kind of feelthis huge weight off of you.

(01:06:16):
For some people, it's hard to get that weight off though.
They're always afraid.
And that would be, I don't know sometimes how to help those patients, but that might besomething you can help with and your book can help with.
There is this amazing specialty that I didn't know existed until my own cancer journeycalled psycho-oncology.
And these are mental health professionals, psychologists, who are trained specifically inthe experience and the issues of cancer patients and their family members.

(01:06:43):
So what I say to someone who can't get it off their shoulders, who it's weighing themdown, there's help.
I'm happy to...
be a source of ideas through the book and what have you, but there actually areprofessionals who've seen this before.
You're not the first person to have trouble.
And what often people say, Florence, is you finish treatment.

(01:07:04):
And I mean, when you're in treatment, it is the center of your life.
it is the sun and you are rotating around it because you have different appointments andit's just interfering with your life.
And then it ends and they say, see you in six.
Six weeks or see you in three months.
Like, wait, don't you want to see me next week?
Nothing to do with you next week.
And there's a void.

(01:07:25):
So a lot of people actually don't know how to fill the void.
You know, do I just go back to everything the way it was?
Does my cancer not mean anything?
And your cancer doesn't mean anything.
It literally is disease, cells run amok.
It doesn't have meaning or consciousness.
If you want to use it as a
catalyst to make a change that you want to make in your life?

(01:07:46):
Great.
And if you don't, great.
to rejoin the world and you have to adapt a little bit.
I'd love to hear an update on how you've sort of shared where you are and it sounds likeyour journey was particularly actually inspiring.
How about your mom and sister?
So we had a party last week to celebrate the book.
My sister lives about 10 miles away from me.

(01:08:08):
She did have, I think we wrote about this in the book, she did have a second primary 20years after mastectomy.
So a very tiny, it responded fully to chemo.
And to Dr.
Esserman's point, because they didn't take out the little tumor, but they did thetreatment first, they saw how her little tiny tumor responded.

(01:08:28):
And it actually led them to stop, not do the full cycle, which was good because everycycle is more and more toxic.
So I only had to do the cycle of carbotaxel with my drugs.
I didn't have to go do AC.
My sister didn't have to do a whole cycle of her treatment.
She got to do a partial because her tumor responded fully.

(01:08:50):
She is also healthy and look.
It's aggravating.
You don't want to see this thing again and again.
you know, I don't want to ever see it again.
But you got to make each day count, not with pressure.
Like, some days are just, you know, so-so days, but you can still, you know, if you canexpress or feel love for a being, a pet, a person, a memory, like, that's a good day.

(01:09:13):
Yeah, gratitude.
I wake up every day and I promised myself last year and I'm keeping to it to be gratefulfor all that I have and all that I am, no matter how bad the day is.
And you wrote at the end of your book as a quote, every cancer patient that spends timefeeling like a victim because cancer can really suck and completely derail your life.
So what's your advice for someone at that point is to find those moments, is to find, gofor a walk, reach for a friend, do something that can

(01:09:41):
take them away from where they are at that moment.
So I think that's a two-step.
The first is it's okay that you feel that way.
And give yourself permission to feel it, to rage.
You want to go to a rage room and break things?
Break things.
You want to write a letter about how much this sucks?
Write it down.
Actually, writing it down is very therapeutic.
And you can keep it, you can shred it, you can burn it, whatever.

(01:10:05):
But don't resist the feeling, because what you resist persists.
But what you will find is it's like a flame.
It burns out pretty quickly.
And then you're just sitting here saying, like, now what?
So the idea of happiness tripwires, which are in the book, is to have inevitable things onyour path that just make you happy.

(01:10:25):
So I enjoyed washing my hair once a week.
Or I tell the story of my baseball player sending me a letter every infusion.
just telling me about his life.
Digital chocolate, to your chocolate metaphor, digital chocolate, it was so good.
I had people who would send me a joke or a meme or a stupid thing they're saying.
Reach into your community, like make sure wherever your community exists, maybe it's yourchurch or synagogue, maybe it's your friends, maybe it's your next door neighbor, maybe

(01:10:52):
it's your family, whoever it is, be there, be there, reach out and get some support.
And tell them, it's not that the support you probably don't need is, how are you doingtoday?
Like, stop it, right?
Like, stop it.
I don't want to have that conversation over and over again.
So I want to end, because we've gone on longer, and I'm grateful for that, because I thinkour listeners are going to really enjoy hearing and reading your book ultimately, because

(01:11:16):
it's honest advice from you, who have been through it all, and more, really.
So you've brought a lot to the table.
I would recommend it very highly for anyone who faces cancer and their families andfriends and loved ones.
So I'm hoping to get it out there and maybe we'll even keep some copies here for peoplebecause I've been managing people who through my treatments have been picked up to have

(01:11:39):
cancer and I think it will make a difference.
It comes from a very positive place.
I really appreciate you being here.
I do have a, and Dr.
Laura Esserman, so I'm sorry we lost her at the end, but she contributed so much aboutwhat's going on at UCSF and where she played this major role and how she thinks people
should.
deal with facing a diagnosis, not to rush in overnight to surgery, but give it time andfigure out what the best course is, as you mentioned for yourself and your sister.

(01:12:08):
I'd love to ask you a question.
I'd like to include this in the podcast.
If someone just stopped you on the street or you met them at a party or on a plane, andthey ask you, and they may know you because of the book, what's your best piece of advice
for living an optimal life?
What would you say?
Wow.
Love with Abandon.
Wow.
With Abandon.
That's hard sometimes though.

(01:12:29):
That means exposing yourself and letting go.
know.
But you know what?
It's like the world is a mirror.
You love with abandon and love comes back to you.
I, yeah, I mean, when I talk about the number of people who sent me expressions ofaffection, love, I these are people I work with professionally.
These are not people that are just my family.

(01:12:52):
And I send it back out to them.
Because if you're in my life, you matter.
You matter to me.
And I think it's so important to just tell people, you met.
I'm glad I'm in your life now.
I am glad that this came to be.
I know I owe it to Stephanie Talenius.
So thank you so much.
And sharing your insights and inspiration with our listeners, my audience, I know it willhelp everybody who takes the time to listen.

(01:13:19):
hope so.
Yes.
Great.
Do you want to give us where the best place to get the book?
Can you buy it on Amazon?
Is it in bookstores?
Is it on Kindle?
So you can buy it as an e-book, Kindle, Nook, whatever.
You can also buy it as a paperback, but only available through online sources.
It's not in bookstores, but any online store you like to frequent, Amazon, Barnes & Noble,everybody else, you can find it.

(01:13:43):
It's Crushing the Cancer Curveball, a playbook for the newly diagnosed, their family andfriends.
And is there any contact you want to share, people want to reach out to you, or is thatsomething they should do through the book?
So the book has QR codes that will lead you back to the website www.joelkaufman.com.
It will lead you to various tools that I created along my journey, things like trackingside effects.

(01:14:08):
And it sounds silly, but you see your doctor, if you're going through chemo maybe everythree weeks, and they say, how was it?
And you don't remember three weeks ago.
You probably don't remember three days ago.
But if you keep it in a tracker,
you can share it.
I actually ended up sharing the link to my tracker with my care team, because it turns outmy care team, they're great at looking at patterns and saying, you seem to be taking

(01:14:33):
Zofran a lot.
Well, I wanted to avoid nausea.
Yeah, but it's actually making you very constipated.
So let's see what happens if we reduce that, and here's what we could try.
And it was just great.
So information is power.
but you can't keep it all in your head.
So the QR codes in the book will take you to joellecoffman.com or you can go tojoellecoffman.com.

(01:15:01):
There's a way to get in touch with me there, but there's also a bot and you can ask itquestions and it will answer nothing medical because I'm not a doctor.
But if you have questions about how to live through this and ways you can.
.
improve your approach.
The bot is there 24-7 for everyone.
Well, I'll have a new resource now along with the book for people who are feeling thatthey might wake up at three in the morning and need, you know, really want to reach out

(01:15:29):
and find out some question, something that's been bothering them or woke them up at threein the morning.
Well, I'll tell you, this was very rewarding.
I've had my own experiences, both a doctor, a friend, a family member.
And I did learn from two women who are much like you.
and they were very high powered women, each of them.
I diagnosed the cancer in one of them.
She was quite young.

(01:15:49):
She was 48 at the time.
And the other one had been diagnosed, but then came to me for care.
And one thing they shared that I found fascinating because I didn't see it from thatperspective is how these women who live very high powered lives felt during their therapy
that they hit a wall and that it was easier to understand some of the people that workedwith them.

(01:16:10):
because when somebody would say to them, just can't do anymore, my mind is blown, or thechemotherapy and the treatment themselves really wore them out.
They had to take really good care of themselves.
And both of them made went out of their way to find people to say, OK, it's three o'clock.
You really finished for the day.
Let's get you out of here.
Because they would not necessarily be able to have the strength to do that themselves, orthey'd be driving home and have to pull over because they were so fatigued from

(01:16:38):
thinking about it, dealing with it, and living through it.
So they live their life to the fullest, and both of them, I'm thrilled to say, are aliveand well many, many years after the diagnosis.
But it was a lesson I've learned, and I've learned many from my patients.
So thank you for sharing your story.
Yeah, and I think that empathy is wonderful.
The empathy that they felt, that they gave themselves, the listening to your body.

(01:17:01):
But I also want to say, a lot of people sideline people when they say they have cancerbecause they're proactively saying, I don't want it to be too much for you.
So if we can share with your listeners, ask them.
Don't sideline them.
Ask if they're open for you.
do this project?
Do you want to do this trip?
Do you want to do this meeting at seven o'clock at night?

(01:17:23):
And as cancer patients, we have to be able to say, yeah, no, that's not going to work.
That's just not going to work.
I have to take care of myself.
advice at every level of taking care of yourself, advice I can use.
So thank you very much, Joelle.
All right, I think that's a wrap.
It went on longer, but I'm grateful for that.
And I hope we could stay in touch.
I'm out in the Palo Alto area.
And periodically, I'll be there next week for a few days.

(01:17:46):
But I will be sharing your book.
And if anything else comes up, let me know.
And maybe we can do this again and revisit where things are at, like a year down the line,six months down the line.
If it's okay with you, I'll also share the book with people.
If they want to reach out, they can reach out at your website, joelkaufmann.com.
All right.
Enjoy the rest of your night.

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.css-14f5ked{margin:0;word-break:break-word;display:-webkit-box;-webkit-box-orient:vertical;box-orient:vertical;-webkit-line-clamp:2;overflow:hidden;}Joelle Kaufman: Breast Cancer Champion and author of Crushing the Cancer Curveball: A Playbook for the Newly Diagnosed and their Family and Friends.

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Joelle Kaufman: Breast Cancer Champion and author of Crushing the Cancer Curveball: A Playbook for the Newly Diagnosed and their Family and Friends.

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