"8% of female patients said they would forgo chemotherapy due to fear of hair loss. We actually had one of those patients that we worked with that became not a statistic anymore."

Bethany Hornthal, co-founder and executive director of Hair to Stay — the only national nonprofit exclusively funding scalp cooling access for low-income chemo patients — built the infrastructure behind scalp cooling's FDA clearance and then stayed to solve the access problem nobody else was addressing. In this conversation, she breaks down the science, the insurance battle strategy, and the personal history that drove her to turn a napkin idea into an organization that has awarded over 8,000 subsidies and $5 million to patients across the country.

They dive deep into:

• The clinical trial that forced FDA clearance: how a 2010–2015 study proved 69% of breast cancer patients could maintain at least 50% of their hair — and why there was no control group needed, because without scalp cooling, all patients would have been bald

• The two-mechanism science behind why scalp cooling works: vasoconstriction limits how much chemo reaches the follicle, while cellular chilling slows metabolism so fast-replicating cells become less vulnerable to chemo's targeting

• Why filing your insurance claim anyway — even expecting a denial — is the actual lever moving the industry: every appeal and state-level escalation is what's building the case for coverage, with 14 states now carrying pending legislation

• How Hair to Stay's targeted donor funds work in practice: segments by age, geography, and profession mean patients who don't qualify under standard income criteria may still have a path to a subsidy — with eligibility decisions returned within 24 hours

• The honest answer on AC/doxorubicin protocols: harder, not disqualifying — and why younger patients with unprocessed hair have shown better outcomes even on the most toxic regimens

• The privacy and control case that goes beyond vanity: a therapist in the episode describes how visibly losing hair changed how her patients treated her in session — affecting the quality of care she could deliver

• Save It Forward, the peer fundraising model where past patients run golf tournaments, gym classes, and cold plunges to fund the next person — every $1,000 raised covers one additional subsidy

• What to do if your care team never mentions scalp cooling: ask directly whether the facility bills insurance on your behalf, because facility-based billing is increasingly common and materially improves reimbursement odds compared to filing solo

  
  

Learn more about scalp cooling from episode sponsor - www.coldcap.com
Learn more about UCSF RiseUp at https://riseup.ucsf.edu/

"The leading cause of non-cancer death in cancer survivors is heart disease. The treatments for cancer may be increasing your probability of getting heart disease.."

Dr. Anju Nohria runs the Cardio-Oncology Program at Dana-Farber and Brigham and Women's Hospital. She's one of the few doctors whose entire job is protecting cancer patients' hearts while they fight for their lives. 

In this episode, she tells Joelle exactly what questions to ask your oncologist, what to watch for, and what you can actually do to protect your heart during and after treatment.

They dive deep into:

• Why heart damage from chemo is almost always silent, no symptoms, no warning, and why by the time you feel something, you've already missed the best window to act

• How to know whether your specific treatment is even risky for your heart, and what monitoring to ask for if it is, because one test does not fit all drugs

• A major study showed that colon cancer survivors who did structured exercise after finishing treatment, not gym workouts, just regular walking, had lower rates of cancer coming back and lived longer at eight years of follow-up

• What happens to your heart when cancer treatment forces you into early menopause overnight, and why your regular OB or endocrinologist may not be the right person to manage it

• Why stopping your blood pressure or cholesterol medication during chemo is one of the most common and most harmful things patients do without realizing it

• The one number Dr. Nohria says every cancer patient should track at home, and exactly what to do if it's too high

• How newer immunotherapy treatments may be creating a long-term heart risk that nobody fully understands yet, and what researchers are trying to figure out right now

You fought hard to get through treatment. This episode is about making sure your heart is there for everything that comes next.

Listen to more episodes: 

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"The majority of cancer drugs are registered at the dose which is intolerable for the majority of women. It causes a lot of clinical and financial toxicity."

Dr. Andrea De Censi has spent his career asking one question: what's the lowest dose that still works? His answer to that question changed how tamoxifen is prescribed—and now he's testing whether a common diabetes drug combined with skipping breakfast could make cancer treatment more effective. He joins Joelle to share what decades of prevention research has taught him, and why so much of it never reaches patients.

They dive deep into:

The clinical trial proving that a quarter of the standard tamoxifen dose reduces breast cancer risk by the same 50%—with no extra risk of serious side effects, and barely half an additional hot flash per day

Why 30 to 50% of women stop taking tamoxifen altogether—and why lowering the dose is a real option worth asking your doctor about, even before official guidelines say so

How metformin (a cheap, widely-used diabetes drug) blocks one of the main ways tumor cells get energy—and why pairing it with intermittent fasting cuts off the backup route too

The simple eating window used in the trial: eat only between noon and 8pm, fast the rest of the time—and why women newly diagnosed with breast cancer stuck to it at a 100% adherence rate

How researchers used a glucose monitor to confirm women were actually fasting—no morning sugar spike means no breakfast, full stop

The WHO trial that was designed to prove synthetic hormones protect the heart—but instead showed they raised breast cancer risk and mortality, overturning decades of thinking about progesterone overnight

A drug already used to shrink fibroids—liprystal—now showing early signs it may reduce breast cancer cell growth too

Why once a drug loses its patent, research funding dries up even when there's still important work to do—and who ends up filling that gap

Learn more about scalp cooling from episode sponsor - www.coldcap.com

Learn more about UCSF RiseUp at https://riseup.ucsf.edu/

Get more stories, strategies, and science at www.kcapodcast.com

"I found one anchor. It was unique to me."

Matthew Zachary was 21, a piano prodigy, when a brain tumor diagnosis stripped him of nearly every bodily function and left him completely alone in a system that had no language for what he was. He went on to build the most successful AYA cancer ecosystem on the planet and now he's starting America's first cancer patient voter bloc.

They dive into:

• Getting diagnosed over an answering machine in 1995 and the chance Friday-night meeting with a neurosurgeon who spent three hours with his family when no one else would

• Refusing chemo at 21 after a geneticist uncle discovered two recommended drugs would cause permanent hearing loss and nerve damage in his fingers, information his doctors never volunteered

• Why no cancer voter bloc has ever existed in America, why the organizations that could have built one never did, and what WeThePatients.org is doing about it

• The three protections he's building the movement around: a reimbursable nurse navigator in every cancer center, a state-law-protected cancer steward role, and hard bankruptcy protections before treatment even starts

• Why Hill Day should be killed, why he's going state-by-state before federal, and how 50 million cancer-affected Americans still have zero coordinated political power

• What it meant to be 21 in pediatric oncology in 1996 with no peers, no mental health support, and no survivorship programs, and why geography still decides the quality of care a young adult receives today

• The single anchor that converted his anger into fuel after diagnosis and why it was entirely his own

  
  

  https://www.wethepatients.org/

"I normalize all my traumas according to my therapist. But seriously — how can you not normalize it? Because this is reality now. It's my normal now."

Bill Thach was 33 when he was diagnosed with neuroendocrine carcinoma — a subtype occurring in roughly 1 in 100,000 cancer diagnoses — with a five-month-old daughter at home. He spent over five years managing it alone before finding Man Up to Cancer's Gathering of Wolves retreat when his eighth line of treatment failed. Now, a year later, he serves as Director of Diversity at Man Up to Cancer, reviews neuroendocrine abstracts for the DoD's congressionally directed medical research program, and runs marathons — not despite his diagnosis, but because of what running teaches him about living with the uncontrollable.

They dive into:

• Why Bill avoided cancer support groups for over five years, and what finally changed

• How vulnerability gets weaponized by friends and family, and why an all-male space removed that risk

• Building culturally specific outreach for men of color rather than applying one message across all communities

• Choosing running over cycling as a deliberate mental conditioning strategy

• Why young adult patients need a multidisciplinary mental health team assembled at diagnosis, not after treatment ends

• The social pressure on cancer patients to appear well, and why Bill stopped managing other people's comfort

• Survivor's guilt and the adolescent and young adult (AYA) cliff: what finishing treatment actually looks like when your peers don't make it

• How advocacy work( chapter leadership, DoD research review, and university AYA panels) delivered more mental health improvement than any single treatment

Gathering of Wolves Retreat: https://gow2026.manuptocancer.org/#/

http://www.manuptocancer.org/  

I told my oncologist that treatment's going to have to wait 'cause I'm booked up. And she just looked at me with eight eyes and said, “Valerie, if you don't treat this, this is fatal."

Performer and playwright Valerie David has had cancer three times: stage 3 non-Hodgkin's lymphoma, stage 2 breast cancer, and stage 4 metastatic breast cancer. During chemo and radiation, she journaled about her experiences and recorded audio diaries when writing became too exhausting. This became the catalyst for her to write The Pink Hulk: One Woman’s Journey to Find the Superhero Within, Valerie’s award-winning, one-woman show that she has performed for the last decade without interruption, both domestically and globally. She also landed in the 3% of patients who achieve a 100% response to treatment after advocating for a specific drug she learned about while copyediting its ad campaign eight months before her own stage 4 diagnosis.

They dive into:

• Requesting baseline vocal cord imaging before chemo starts

• How her copyediting work on an ad campaign led to advocating for a drug that helped her become a three-time cancer survivor 

• Recording audio diaries when journaling becomes too draining

• The importance of patient advocacy: Calling the specialist yourself when your care team stalls

• Switching hospitals after 20 years mid-treatment

• Performing The Pink Hulk on the very day she found out about her stage 4 diagnosis

• Why life expectancy framing from support counselors causes real harm

• Her HER2-positive, PR-positive, ER-negative diagnosis and why it changed her chemo protocol

  
  

  Valerie socials:

  IG: @ValerieDavid_PinkHulkPlay

  FB: @The Pink Hulk and @ValerieDavid

  https://www.instagram.com/valeriedavid_pinkhulkplay/

  https://www.facebook.com/pinkhulkplay/

  https://www.facebook.com/valerie.david.96558/

  
  

"I felt like I had been derailed. We had built our careers over several decades and we knew what the challenges were in building our careers as well. We had to overcome a lot of bias... and when something like this hits you, there's the fear that… Am I slipping in taking care of business?"

Patricia Muir was at the peak of her consulting career, three decades of building her business, when breast cancer hit in 2013. She caught it early through intuition, went through surgery and radiation, and returned to work physically ready. But she found herself staring in the mirror not recognizing the person looking back. Not physically. Emotionally. As an entrepreneur and executive coach specializing in emotional intelligence, she reveals the hidden professional crisis successful women face post-cancer: being told on day one they're on their way out, boardroom perception shifts that question capability, and the identity reconstruction that medical teams never address.

Joelle and Patricia dive deep into:

• Return to work versus return to performance framework: three paths from diagnosis—reflection to thriving, questioning to passive performance, or disillusionment to disengagement

• Self-trust over self-confidence: making and keeping small promises to yourself builds evidence your body can handle this—escaping the "you just need more confidence" trap

• "Needs to know" disclosure strategy for compliance-driven professionals: protecting privacy while managing unwanted daily wellness checks and colleague fussing

• Empathy as recovery drain: recognizing when supporting others' cancer diagnoses depletes your energy and redirecting effort back to yourself

• Year-long emotional intelligence rebuilding: cancer hits self-perception and self-regard hardest, requiring structured work across specific domains rather than quick fixes

• Watching for emotional triggers in client work: identifying when hearing others' diagnoses creates performance-affecting responses you need to manage

• Wellspring facilitated groups: why sharing with strangers in treatment proves more therapeutic than confiding in close networks who haven't had cancer

• The day-one exit signal: why women executives report knowing immediately post-treatment they're being pushed out despite proven capability

Patricia transformed her business 12 years post-diagnosis, choosing joy and impact over adrenaline and difficult clients by focusing her work exclusively on executive women post cancer.. For executive women wondering if they'll maintain their hard-won authority and position: this episode maps the path from derailment to intentional redesign.

“I talk about my sparkle and I just felt like… hormone blockers took my sparkle. That cognitive side of it, the lack of desire, feeling just fatigued... during cancer treatment, it was like the last thing that I wanted to do."

In this essential conversation, clinical sexologist Richelle Menzies, USA Today bestselling romance author Cara Lockwood, and pharmacologist Dr. Erika Reith (all breast cancer survivors) break the silence on what 87% of cancer patients experience but only 27% are ever asked about: what happens to your sex life during and after treatment. From hormone blockers that erase desire to surgeries that eliminate sensation, they reveal the specific medical interventions and frameworks that restore intimacy when oncologists offer nothing but silence.

They dive deep into:

• Vaginal estrogen protocols reversing severe atrophy when even washing becomes painful—why emerging peer-reviewed research proves safety for hormone-positive cancers

• Testosterone cream restores energy levels within one week and libido within three months when hormone therapy crashes levels to zero

• Traffic light negotiation framework: separating red (absolute no), yellow (nice to have), green (must have) needs before difficult partner conversations

• Six-week progressive touch protocol rewiring neuroplasticity by mapping new erogenous zones on previously non-sexual body areas after mastectomy

• "Use it or lose it" blood flow principle with critical exception: stop immediately if there's pain or risk conditioning vaginismus responses

• Responsive versus spontaneous desire shift affecting 75% of women post-treatment and why Emily Nagoski's "Come As You Are" framework changes everything

• Weekly capacity check-ins replacing one-time conversations to assess what's working and what needs adjustment as recovery progresses

• Five senses somatic grounding and extended exhale breathing techniques bringing you back into your body when fight-or-flight response blocks intimacy

• Why late-stage neurodivergence diagnoses spike during treatment as hormone suppression causes masking behaviors to drop

Cancer doesn't get to decide you're done being a sexual being. These interventions exist right now—you just have to advocate for them yourself.

"Why can't we build a contraceptive that reduces breast cancer risk? That's the way to get rid of breast cancer. I don't want to just keep treating it. I want to prevent it altogether."

In this groundbreaking episode, Dr. Laura Esserman, Director of the UCSF Breast Cancer Center, joins Joelle Kaufman to reveal how her 47,000-patient WISDOM study just proved we can eliminate late-stage breast cancer through risk-based screening—and why the medical establishment resisted her every step of the way.

They dive deep into:

• WISDOM study results: Zero stage 2B+ cancers in highest-risk women screened every 6 months versus annual age-based protocols

• Population genetic testing economics: now cheaper than a single mammogram, done once, reveals 30% of mutation carriers have no family history

• Polygenic risk scores (PRS) changing screening recommendations for 15% of women beyond single-gene BRCA testing

• AI breast density algorithms identifying the actual 10% who need supplemental screening—not the 50-60% currently over-screened

• Anti-progestin medications like mifeprestone already used for fibroids and endometriosis are being repurposed as breast cancer prevention tools

• Intermediate endpoint frameworks for prevention drugs modeled on cardiology's blood pressure and cholesterol standards

• Why 25% of I-SPY trial patients are under 40 and what that reveals about current screening failures

• The $4-5 million funding gap is blocking WISDOM 2.0 enrollment while waiting 1-2 years for insurance guideline changes

From proving precision screening works to building prevention pathways that could cut annual diagnoses from 320,000 to 150,000, this is essential listening for anyone rethinking how we approach women's health.

Don't wait for guidelines to catch up. Understand the science that's already proven.

Support the WISDOM Study—help provide genetic testing and personalized screening to women while we wait for insurance guidelines to catch up: https://giving.ucsf.edu/fund/wisdom 

"Call us. Get into the program and allow us to help you. You need someone there to help you. Cancer is a journey—you've got to have a support system." 

In this eye-opening episode, Steve Cain, CEO of UnitedHealthcare California, joins Joelle Kaufman to reveal how insurance companies are transforming from claims processors into active care partners during the most vulnerable moments of a patient's life.

They dive deep into:

• The Cancer Support Program: 100+ oncology RN navigators who coordinate your entire care journey

• Zero-copay cancer screenings and first diagnostics in California—removing financial barriers that delay treatment

• Cancer Guidance Program: NCCN-pathway platform embedded in provider EMRs approving treatments in hours, not weeks

• How claims data triggers proactive outreach when diagnostic codes and pharmacy fills signal a serious diagnosis

• Why most denials stem from "insufficient information" and how navigators bridge documentation gaps

• The $130 million affordable housing investment driven by data proving stable housing improves cancer outcomes

• Transparency tools showing exact episode-of-care costs and quality metrics at decision time

• Why calling your insurance company the moment you hear "you have cancer" is the most underutilized resource

From eliminating copays to deploying AI for early detection outreach, this is essential listening for anyone navigating cancer—or leading healthcare innovation.

Don't just survive the system. Make it work for you.