Cancer Health Summer 2025

LAUGHING OUT LOUD

Cheeky humor lifts spirits and eases outreach

Financial Aid When Insurance Isn’t Enough

E xclusively on Can cer Health.com

Cancer Health Stories

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person stories of people who are living with cancer, including personal diaries and honest, moving essays. cancerhealth.com/stories

Basics

Whether you’re newly diagnosed or a long-term survivor, check out our Basics section on cancer treatment, how to manage side effects and more. cancerhealth.com/basics

Science News

Learn about the latest treatment and prevention advances, cure research and conference news. cancerhealth.com/science-news

Cancer Health Digital

Scan the QR code (left) with your smartphone to check out the digital issue of Cancer Health online, or go to cancerhealth.com/digital to read past issues and the entire Smart + Strong digital library.

CH25: They’re fighting for you!

12 JOKING THROUGH THE TOUGH PARTS

Advocate Daniel Garza has faced anal cancer, HIV and addiction. His (slightly sick!) humor certainly helps. BY TIM MURPHY

16 THE 2025 CANCER HEALTH 25

For our sixth annual list, we spotlight—and salute!—the many types of patient advocates. BY THE CANCER HEALTH STAFF

2 From the Editor Patients & Protesters

4 News

Federal health care roundup | stars share cancer stories | HPV vax: one and done? | new trends in cancer rates | preserving future fatherhood

6 Care & Treatment

Vaccines for pancreatic and kidney cancer | immunotherapy lets some skip surgery | nerve-sparing prostate cancer surgery | healthy lifestyle lowers cancer mortality risk | preventing peripheral neuropathy

8 Voices

Jackie Lantry discloses her breast cancer diagnosis to the mermaids.

9 Basics

Regular cancer screenings

10 A Melanoma Diary

Susan Pack’s Stage IV skin cancer

27 Can Heal

Living with leukemia, Barb Skurdahl

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30 Your Team

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31 Solutions

Self-care tips for cancer advocates

32 Good Stuff Beach reads, sun safety and more

33 Reader Survey

Tell us more about your advocacy.

Patients & Protesters

SENATOR TAMMY BALDWIN

'Ŋ:LVFƓJKWVWRVHFXUHIXQGLQJ for Medicaid and raises awareness for cancer patients who rely on the SURJUDP%DOGZLQDOVRYLJRURXVO\ champions cancer research and the National Institutes of Health.

6XFKDGYRFDF\LVFUXFLDOWRGD\ as the Trump administration defunds and dismantles the federal health GHSDUWPHQWDQG&RQJUHVVVHHNV PRUHDJJUHVVLYHFXWVLQWKH EXGJHW$VRXU1HZVURXQGXSRQ SDJHUHFRXQWV$PHULFDQVDUH WDNLQJWRWKHVWUHHWVLQSURWHVW$W $&783ōV'HDWKE\0XVN&XWV PDUFKDQGGLHLQRQHDFWLYLVWFDUULHG a cardboard tombstone inscribed with the phrase “Died of Untreated Breast Cancer.”

3URWHVWHUVDQGOHJLVODWRUVPD\UHSresent the more in-your-face variety RISDWLHQWDGYRFDWHVEXWFRXQWOHVV RWKHUVDUHDVVLVWLQJSHRSOHOLYLQJ ZLWKFDQFHUGRFWRUVDQGRQFRORJ\ QXUVHVIXQGUDLVHUVVRFLDOZRUNHUV VXSSRUWJURXSOHDGHUVDQGPRUH,Q RXUVL[WKDQQXDO&DQFHU+HDOWK we salute patient advocates. Turn to SDJHWRJHWLQVSLUHG 3DWLHQWDGYRFDWHVDERXQGWKURXJKRXWRXUSDJHV7KHFRYHUVWRU\RQ SDJHSURƓOHV'DQLHO*DU]DZKR KDVVXUYLYHGDQDOFDQFHU+,9DQG DGGLFWLRQWKDQNVLQSDUWWRKLVVOLJKWO\ VLFNVHQVHRIKXPRUZKLFKKHDOVR HPSOR\VWRHGXFDWHUDLVHDZDUHQHVV and advocate for others. Former nurse and hospital volunteer Susan Pack shares her Melanoma Diary on SDJH2XU<RXU7HDPFROXPQRQ SDJHLQWHUYLHZVWKH+HDOWK:HOO

)RXQGDWLRQōV)UHG/DUELDERXWƓQDQcial help for cancer patients. And for RXU&DQ+HDOSURƓOHRQSDJH%DUE 6NXUGDKOVKDUHVDGYLFHRQWKULYLQJ with chronic lymphocytic leukemia.

$VDOZD\VZHURXQGXSWKHODWHVW FDUHDQGWUHDWPHQWKHDGOLQHV%HJLQQLQJRQSDJH\RXōOOOHDUQDERXW QHUYHVSDULQJSURVWDWHFDQFHUVXUJHU\ vaccines to lower the recurrence of pancreatic and kidney cancers and FKLOOHGJORYHVWKDWPD\KHOSSUHYHQW peripheral neuropathy. And we seek \RXULQSXWLQRXU6XUYH\RQSDJH 7KLVLVVXHōVWRSLFDV\RXPLJKWKDYH JXHVVHGLVDGYRFDF\

)LQDOO\6ROXWLRQVRQSDJHRIIHUV self-care tips for cancer advocates.

TRENT STRAUBE Editor-in-Chief trents@cancerhealth.com TrentStraube.com

EDITOR-IN-CHIEF

Trent Straube

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Jennifer Morton

SCIENCE EDITOR

Liz Highleyman (',725$7/$5*( Bob Barnett

NEWS WRITERS

Sukanya Charuchandra; Laura Schmidt &23<&+,()

Joe Mejía

ART DIRECTOR

Doriot Kim

$57352'8&7,210$1$*(5 Michael Halliday $'9,625<%2$5' Dena Battle; Jamie Ennis Boyd; Catherine Guthrie; Timothy Henrich, MD; Carl June, MD; Leigh Leibel, MSc; Yung Lie, PhD; Gilberto Lopes, MD; Jennifer L. McQuade, MD; Amelie Ramirez, DPH; Hope Rugo, MD; Kelly Shanahan, MD; Carla Tardif

FEEDBACK

Email: info@cancerhealth.com

SMART + STRONG

PRESIDENT AND COO

Ian E. Anderson

EDITORIAL DIRECTOR

Oriol R. Gutierrez Jr. &+,()7(&+12/2*<2)),&(5 Christian Evans 9,&(35(6,'(17 ,17(*5$7('6$/(6

Diane Anderson

,17(*5$7('$'9(57,6,1* 0$1$*(5 Jonathan Gaskell ,17(*5$7('$'9(57,6,1* COORDINATOR

Sarah Pursell

SALES OFFICE 212-938-2051 sales@cancerhealth.com BULK SUBSCRIPTIONS order.cancerhealth.com or subs@cancerhealth.com

CDM PUBLISHING, LLC &+,()(;(&87,9(2)),&(5 Jeremy Grayzel CONTROLLER

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Chaos and Budget Cuts

A roundup of federal health headlines

Somebody dial 911! Since President Donald Trump WRRNRIƓFHIRUKLVVHFRQGWHUPKLVDGPLQLVWUDWLRQ KDVGHIXQGHGJUDQWVLPSOHPHQWHGPDVVLYHƓULQJV of federal employees and restructured or eliminated programs throughout the nation’s umbrella KHDOWKDJHQF\WKH'HSDUWPHQWRI+HDOWKDQG +XPDQ6HUYLFHV++6ZKLFKLQFOXGHVWKH1DWLRQDO ,QVWLWXWHVRI+HDOWK1,+WKH1DWLRQDO&DQFHU,QVWLWXWHWKH&HQWHUVIRU'LVHDVH&RQWURODQG3UHYHQWLRQ DQGWKH&HQWHUVIRU0HGLFDUH 0HGLFDLG6HUYLFHV &RXQWOHVVFOLQLFDOWULDOVKDYHEHHQKDOWHGSXEOLF VHUYLFHVGLVUXSWHGDQGWKHFROOHFWLRQRIKHDOWK GDWDVXFKDVQHZFDQFHUGLDJQRVHVLPSHULOHG :KDWōVPRUH(ORQ0XVNDQGKLV VRFDOOHG'HSDUWPHQWRI*RYHUQPHQW(IƓFLHQF\'2*(JDLQHG access to the databases of federal DJHQFLHVZKLFKLQFOXGHLQIRUPDWLRQ RQSULYDWHFLWL]HQVDVWKH\GLVPDQWOHYLWDOKHDOWKSURJUDPVXQGHUWKH JXLVHRIHIƓFLHQF\DQGVDYLQJV 2YHUVHHLQJWKHFKDRVDUHWKHQHZ

STAR POWER

Tina KnowlesŋPRPWR%H\RQF« and Solange—shares motherly ZLVGRP$IWHUVKHPLVVHGD scheduled mammogram during WKH&29,'VKXWGRZQDODWHU WHVWIRXQG6WDJH,EUHDVWFDQFHU ZKLFKKDVEHHQWUHDWHG.QRZOHV UHYHDOVLQKHUPHPRLUMatriarch 6KHōVQRZFDQFHUIUHH.QRZOHV WHOOV3HRSOHPDJD]LQHDGGLQJ ŏ,WōVLPSRUWDQWQRWWRVODFNRQ your mammograms.” • Real Housewives of Beverly Hills star Teddi MellencampGDXJKWHU RIURFNHU-RKQKDVEHHQVKDULQJ her cancer journey since a 2022

+HDOWK6HFUHWDU\5REHUW).HQQHG\ -UDQDQWLYDFFLQHDFWLYLVWZLWKQR IRUPDOPHGLFDOH[SHULHQFHDQG 1,+GLUHFWRU-D\%KDWWDFKDU\D 0'3K'7UXPSKDV\HWWRQDPH DQHZOHDGHUIRUWKH1DWLRQDO &DQFHU,QVWLWXWH

Kennedy and Bhattacharya; inset: a protest against Musk

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Celebrities shine a spotlight on health issues.

PHODQRPDGLDJQRVLV5HFHQWO\ the skin cancer spread to her EUDLQDQGOXQJVŏ7KHGRFWRUVDUH KRSHIXOWKDWLPPXQRWKHUDS\ZLOO HIIHFWLYHO\WUHDW>WKHWXPRUV@ŐVKH ZURWHRQ,QVWDJUDPŏ,DPIHHOLQJ SRVLWLYHŐŘ$IWHUDGLDJQRVLVRI LQYDVLYHGXFWDOFDUFLQRPDDW\SH RIEUHDVWFDQFHUBachelorette star Katie Thurston shared her questions about fertility and pregnancy and reminded social PHGLDIROORZHUVWKDW\RXFDQōW EHŏWRR\RXQJŐIRUFDQFHUŘ)LYH months after learning he had 6WDJH,,,QRQ+RGJNLQO\PSKRPD

The American public does not seem to be signing off on Trump’s YLVLRQ3URWHVWVKDYHVSUXQJXS DFURVVWKHQDWLRQVXFKDVWKH'HDWK E\0XVN&XWVPDUFKRUJDQL]HGE\WKH$,'6DFWLYLVWJURXS $&783ZKRVHSURWHVWVLQWKHV DQGōVOHGWROLIHVDYLQJWUHDWPHQW and expanded access to health care.

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Dave Coulier

Uncle Joey on Full House —is cancer-free.

From left: Teddi Mellencamp, Katie Thurston, Dave Coulier and Tina Knowles

1RZDFDQFHUUHVHDUFKDPEDVVDGRUDW9)RXQGDWLRQKHōVUDLVLQJ IXQGVDQGSURPRWLQJVFUHHQLQJV VXFKDVFRORQRVFRSLHVŏ,WōVD UHDOO\VLPSOHWKLQJWRGRŐKHWROG 7RGD\FRPŏDQGLWFDQDGG\HDUV to your life.”

Ups and Downs HPV VAX: ONE

AND DONE?

A single jab of the human papillomavirus (HPV) vaccine seems to work as well as the currently recommended two doses for adolescents, according WRƓQGLQJVIURPD1DWLRQDO Institutes of Health study in Costa Rica. HPV, a common sexually transmitted infection, triggers abnormal cell growth that can lead to cervical, genital, anal and oral cancer. The Gardasil 9 vaccine protects against nine highrisk HPV types. Ideally, young people should be vaccinated before they become sexually active. If recommended by U.S. KHDOWKRIƓFLDOVODWHUWKLV year, a single shot, which is cheaper and less burdensome than a two-dose series, could boost uptake—and help eradicate cervical cancer.

Overall cancer death rates declined from 2001 through 2022 for women, men and children, despite COVID-19 interruptions,

ƓQGVWKH$QQXDO Report to the Nation on the Status of Cancer, jointly issued by federal health agencies and the American Cancer Society (ACS). The decrease was driven by lower death rates for smoking-related cancers. For men, the rates of new diagnoses, or cancer incidence, dropped from 2001 to 2013, then stabilized through 2021. For women, new cases rose slightly each year from 2003 to 2021 (2020 was the exception). A separate ACS report shows mixed trends in cancer prevention and screenings post-COVID. Breast and colorectal screenings rebounded after a drop during

FUTURE FATHERHOOD

the pandemic; cervical cancer screenings remain lower than before COVID, and human papillomavirus (HPV) vaccinations DUHŴDW$OWKRXJKVPRNLQJUDWHV continue a long-term decline, 27 million adults smoked in 2023. ,WōVHVWLPDWHGWKDWRIFDQFHUV DUHUHODWHGWRPRGLƓDEOHULVN factors, such as tobacco use, alcohol consumption, excess body weight and lack of exercise.

A 26-year-old man who had childhood FDQFHUKDVUHFHLYHGWKHƓUVWNQRZQ transplant of sperm-producing stem cells. When Jaiwen Hsu was diagnosed with bone cancer and underwent chemotherapy at age 11, doctors froze some of his testicular cells to improve his chances of becoming a dad in the future. The effort is part of a study at the University of Pittsburgh Medical Center that so far has included about 1,000 boys. “The science behind it is so incredibly new,” Hsu told 7KH$VVRFLDWHG3UHVVŏ,WōVNLQGRIHDJHUO\FURVVLQJRXUƓQJHUVDQG hoping for the best.”

VACCINES FOR PANCREATIC AND KIDNEY CANCER

Growing evidence suggests that personalized vaccines may help prevent cancer recurrence.

To create a customized cancer vaccine, scientists genetically sequence a patient’s tumor and identify neoantigens—abnormal proteins unique to cancer cells—that are most likely to trigger a robust immune response. Compared with some other malignancies, such as melanoma, however, pancreatic and kidney cancers have few targetable mutations to work with.

The Phase I pancreatic cancer study is evaluating a vaccine called autogene cevumeran %17RU526L[WHHQSHRSOHXQGHUwent surgery, and a customized messenger RNA (mRNA) vaccine was made for each of them. They received several primer and booster doses along with the checkpoint inhibitor Tecentriq (atezolizumab) and a four-drug chemotherapy regimen.

The researchers previously reported that half of the patients had strong T-cell responses against at least one neoantigen in the vaccine. Now, they have found that activated T cells lasted more than WKUHH\HDUVLQWKHUHVSRQGHUV:KDWōVPRUHVL[RI

the eight responders remained cancer-free, while most nonresponders relapsed. The vaccine, which was safe and well tolerated, has advanced to a larger randomized Phase II trial.

The Phase I kidney cancer study included nine people with advanced renal cell carcinoma who underwent surgery but were considered to be at high risk for recurrence. A custom vaccine containing neoantigen peptides, or chains of amino acids, was produced for each patient. They received a series of primer doses and two boosters; some also used the checkpoint inhibitor Yervoy (ipilimumab).

After about three years of follow-up, all had T-cell immune responses against tumor neoantigens and none relapsed. This vaccine was also safe and well tolerated. An mRNA kidney cancer vaccine, dubbed V940 or mRNA-4157, is now being tested in a larger Phase II trial. “These results support the feasibility of creating a highly immunogenic personalized neoantigen vaccine in a lower mutation burden tumor,” says study coauthor Patrick Ott, MD, PhD, of Dana-Farber Cancer Institute.

Immunotherapy Lets Patients Skip Surgery

Treatment with the checkpoint inhibitor Jemperli (dostarlimab), which unleashes T-cell activity, allows many people with misPDWFKUHSDLUGHƓFLHQWG005 cancer to forgo surgery and maintain their quality of life, according to a study presented at the American Association for Cancer Research annual meeting. Jemperli made headlines in 2022 when Andrea Cercek, MD, of Memorial Sloan Kettering Cancer Center, reported that all 12 patients with advanced rectal FDQFHUZKRƓQLVKHGVL[PRQWKV

of treatment achieved complete remission. The Phase II trial was

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The latest analysis included 117 previously untreated patients with Stage I, II or III dMMR solid tumors. People in Cohort 1 had rectal cancer, while those in Cohort 2 had various malignancies, including bladder, endometrial and prostate cancers.

All 49 rectal cancer patients WUHDWHGZLWK-HPSHUOLIRUVL[ months had a clinical complete response and avoided surgery. In the second cohort, 35 of the

54 (65%) had a complete response, and 33 opted to forgo surgery. Some who did not achieve a complete response VWLOOH[SHULHQFHGVXEVWDQWLDO tumor shrinkage.

“This study shows that immunotherapy can replace surgery, radiation and chemotherapy for PLVPDWFKUHSDLUGHƓFLHQWVROLG tumors, which could help patients preserve their organs and avoid the harsh side effects of chemo and radiation,” Cercek says.

Nerve-Sparing Prostate Cancer Surgery

Robot-assisted surgery can spare nerves and help avoid sexual dysfunction and urinary incontinence in men with prostate cancer. Greg Shaw, MD, of University College London, and colleagues evaluated a robotic surgery technique known as NeuroSAFE that spares nerves that run through the prostate’s outer layers. The method includes testing during surgery to see whether more cancerous tissue needs to be removed.

The Phase III study enrolled men of all ages with nonmetastatic prostate cancer. The analysis included 173 patients randomly assigned to undergo NeuroSAFE surgery and 171 who underwent standard robot-assisted radical prostatectomy. After a year of follow-up, 39% of men in the NeuroSAFE group had no or mild erectile dysfunction compared with 23% in the standard surgery group. What’s more, NeuroSAFE recipients were more likely to report good erectile function (20% versus 14%) and less likely to have severe dysfunction (38% versus 56%). A similar proportion of men in both groups regained full continence by 12 months, but NeuroSAFE recipients recovered urinary control faster. “Our results show that by using NeuroSAFE, nearly twice as many men don’t have to face potentially life-changing loss of erectile function after prostate surgery,” says Shaw.

Healthy Lifestyle Lowers Cancer Mortality Risk

A new study from American Cancer Society scientists shows that following KHDOWK\OLIHVW\OHJXLGHOLQHVEHQHƓWV cancer survivors. In an analysis of nearly 4,000 nonsmoking participants in the Cancer Prevention Study-II Nutrition Cohort who were diagnosed with obesity-related cancers, those who stayed physically active, ate a healthy diet, limited alcohol consumption and maintained a healthy weight both before and after their diagnosis—as well as those who improved their habits after diagnosis—had a lower risk of death. Survivors who followed the guidelines had a 24% lower risk of all-cause mortality and a 21% lower risk of cancer-related death.

ŏ7KHVHƓQGLQJVXQGHUVFRUHKRZ making the right lifestyle choices truly affects cancer survival,” says lead study author Yin Wang, PhD.

PREVENTING PERIPHERAL NEUROPATHY

:HDULQJIUR]HQRUWLJKWƓWWLQJJORYHVGXULQJFKHPRtherapy may help prevent painful peripheral neuropathy. Chemotherapy is effective for many types of cancer, but the medications can harm normal cells, leading to side effects. Taxane drugs are especially likely to cause peripheral neuropathy, or damage to nerves in the extremities, leading to symptoms such as pain or numbness. One way to prevent neuropathy is to limit blood circulation to the hands and feet during chemo.

The German POLAR study included 122 women undergoing treatment for breast cancer using

paclitaxel (Taxol) or nab-paclitaxel (Abraxane). One group wore a frozen gel glove and the other wore WZRWLJKWƓWWLQJVXUJLFDOJORYHVRQRQHKDQGEHIRUH during and for a half hour after chemotherapy. In the cooling group, 29% experienced high-grade neuropathy in the treated hand compared with 50% in the untreated hand at one month. In the compression group, the corresponding rates were 24% versus 38%. While both methods worked, women found it harder to tolerate hand cooling. What’s more, surgical gloves are cheap and readily available.

Testing the Waters

After learning she has triple-negative breast cancer in 2022, Jackie Lantry ponders which friends to tell—and how to do it. She decides to start with the mermaids.

I’M AWKWARDLY MAKING

my way through the “How do I tell people? Who do I tell? What do I say?” phase of a cancer diagnosis. I swim and attend a water aerobics class four days a week, so, of course, the mermaids, as I dubbed the ladies in my class, are on the “tell” list. It’s all so weird—like a big reveal gone wrong. The very worst thing is getting all emotional. I am not a cry-in-public kind of gal. That said, I am very tenderhearted, so I’ve spent a lifetime trying to master how not to get overemotional in sensitive situations. When I was preparing to deliver the eulogy for my dear Aunt Charlotte, I researched strategies to get through it sans tears. One bit of advice was this: If you start to get emotional, stop, take a breath and do a quick math calculation in your head. It will literally shift your mind from the emotional to the practical (and dry up your tear ducts in the process). I tried it. It was very effective. There were tears, but I was not a blubbering, leaky mess.

As I drove to the pool, I thought about how I’d tell them. They were in the shallow end when I arrived: a line of mermaids, foam barbells in hand. I stood at the edge of the deep end and dipped my toe in to test the water. I dived in. I have a love-hate

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I hate the bracing shock of cold, but I love the feeling of the water rushing along my body.

Swimming toward the group, I thought about what to say.

“I have cancer.” Nope, not a good opening line.

“I have an announcement.”

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“There’s no easy way to say this.” Ick, sense of impending doom.

“I’m not sure how to do this, and there’s no instruction book, so I’ll just say it.” Yeah, that feels right. I’ll just stick to the facts.

,ZDVƓOOHGZLWKGUHDG7KH very last thing I wanted to do was cry in public. The horrible scrunched-up face. Not for me.

While we aqua punched, I practiced the opening line in my head.

“There’s no rule book.” Wait, no, that’s not it. “There’s no instruction book.”

We did jumping jacks. (I practiced my lines.) We cross-country skied and ran in place (more practice).

By the time we got to aqua yoga, I was settled. It would go like this: Deep breath. Stick to the facts. If things get emotional, rustle up a little trigonometry.

Sandy, the instructor, said, “Jackie has an announcement.” Deep breath. Stick to the facts.

“There’s no instruction book for this, so I’m just going to say it.”

“I have…” Bit of panic.

Math. Math!

There’s no rule book on how to disclose.

8 times 8, 8 times freakin’ 8, what the hell? I felt tears well up. I felt my face scrunching up. I choked out, “I have breast cancer.” I tried to follow up with, “I’m not going to be around for DZKLOHŐEXW,ZDVŴDLOLQJ,WKLQN I said, “Everything is going to be OK,” but my mind went blank.

Then I was lost.

I saw someone moving toward me, raising their hand.

“Survivor,” Mary said, in a strong, steady voice, as she put her hand in the air.

“Survivor,” Sandy said, raising her hand.

“Survivor,” another Mary said, raising her hand.

They moved in, hugging me in turn, surrounding me with… survival. Q

Jackie Lantry is retired and lives in Southern New England. After 14 months of treatment, she has no signs of breast cancer and is QRZRQDƓYH\HDUKRUPRQH therapy regimen.

Cancer Screening

Regular screening can detect several types of cancer at a more treatable stage.

CANCER IS OFTEN DIFFICULT

to treat at advanced stages, but some malignancies can be detected early with regular screening. The U.S. Preventive Services Task Force (USPSTF), the American Cancer Society (ACS) and professional organizations update screening guidelines based on the latest research.

Breast cancer: A mammogram (low-dose X-ray) is the primary method of breast cancer screening. The USPSTF recommends screening mammograms every two years for women ages 40 to 74 at average risk. Those at higher ULVNPD\EHQHƓWIURPPRUH frequent screening.

Cervical, anal and oral cancer: These cancers are caused by human papillomavirus (HPV), a common sexually transmitted infection. Screenings for cervical and anal cancer include Pap tests and testing for high-risk HPV types. The USPSTF recommends cervical cancer screening starting at age 20. Routine anal cancer screening is not recommended for the general population, but gay men and people living with HIV are at higher risk. Dentists look for signs of oral cancer during routine dental care.

Colon and rectal cancer: The USPSTF recommends colorectal cancer screening for adults ages 45 to 75 at average risk. People at LQFUHDVHGULVNPD\EHQHƓWIURP

earlier screening. Options include a colonoscopy every 10 years, ŴH[LEOHVLJPRLGRVFRS\HYHU\ƓYH years or stool tests every year. A FRORQRVFRS\XVHVDŴH[LEOHOLJKWed tube to view the entire colon, while a sigmoidoscopy views the lower section. Stool tests look for blood or abnormal DNA in a sample collected at home.

Liver cancer: Chronic hepatitis B or C, heavy alcohol use and fatty liver disease can lead to cirrhosis and liver cancer. While screening is not recommended for the general population, the American Association for the Study of Liver Diseases recommends semiannual monitoring using ultrasound scans and alfa-fetoprotein blood tests for people with cirrhosis.

Lung cancer: Screening for lung cancer involves low-dose CT imaging of the chest. Screening is not recommended for the general population at average risk. The USPSTF recommends annual scans for people ages 50 to 80 with a 20-pack-year smoking history who either currently smoke or have quit within the past 15 years. The ACS calls for screening people in this age group regardless of how long ago they quit.

Prostate cancer: ScreenLQJZLWKSURVWDWHVSHFLƓF antigen (PSA) blood tests can detect aggressive prostate cancer early, but routine WHVWLQJFDQDOVRƓQGVORZ

growing malignancies that would never become life-threatening. According to the USPSTF, men ages 55 to 69 should make an individual decision about PSA testing with their health care provider. The ACS recommends that men at average risk should discuss PSA screening starting at age 50, or as soon as age 40 for those at higher risk.

Skin cancer: Visual examination of the skin can detect abnormal growths that might be cancerous. Look for moles that are large, have an irregular shape or unusual colors or have changed in size or appearance. These recommendations are for preventive screening for people at average risk who currently have no signs or symptoms of cancer. Contact your doctor if you notice an unusual lump, abnormal appearance or change in function anywhere in the body or have symptoms such as prolonged fatigue, unexplained weight loss or pain without a known cause. Q

Mammogram

A Melanoma Diary

Susan Pack, 68, of Scottsdale, Arizona, is living with a rare type of skin cancer that metastasized.

I’M A REGISTERED NURSE. I WORKED FOR many years in labor and delivery, then in IVF clinics and later for insurance companies. I obtained training as an end-of-life doula, which came in handy when we cared for my dad, a Holocaust survivor who lived to 99. I retired in 2021. I volunteer in hospitals with my therapy dog and co-facilitate groups for children who’ve lost loved ones. My husband and I have been married for 48 years. We have three sons and three grandchildren.

April 2020

I noticed a reddened area on my left cheek. It was increasing in size. I saw a plastic surgeon, who advised me to see my dermatologist.

May 2020

The physician’s assistant at my dermatologist didn’t think it was anything but did a biopsy to reassure me. Six days later, she called to tell me I had tested positive for melanoma. It’s a rare type that’s pale or pink, rather than the typical brownish spot with darker speckles, which made it harder to detect. I was blown away. I knew of people with melanoma who had died. I was fearful. But genetic testing came back with a metastasis-free rate of 97% RYHUƓYH\HDUV,IRXQGWKDWH[WUHPHO\UHDVVXULQJ

June–August 2020

I was referred to a second dermatologist. She felt the lesion was too large for a slow Mohs surgery [in which minuscule layers of skin are meticulously removed and examined over a period of days until all the cancer is excised], so she referred me to an ENT [ear, nose and throat specialist] who had experience doing a wide local excision. He removed 9 square centimeters, about 1½ square inches. The pathology report revealed potential residual melanoma, so additional treatment was

advised. [Several weeks later] my dermatologist completed a slow Mohs procedure. I had a really huge scar on my face. Both providers monitored my healing and made recommendations for scar revision.

Susan Pack with Coby and Lexi shortly after starting treatment

October–December 2020

A laser resurfacing treatment in October and a second one in December. They were very helpful in reducing the appearance of the scar. I saw my dermatologist for skin checks every three months. I was diligent about those.

June 2021

I had squamous cell carcinoma on my right lower leg. It was removed via Mohs.

February 2023

I had basal cell carcinoma in the same area, also removed via Mohs. I didn’t think too much about it. I’m fair-skinned. When I was a child, my father would say, “Go get a good sunburn.”

September 2024

I was seeing my dermatologist twice a year and doing well. But I was plagued by digestive symptoms that summer, so in September, I had a CT VFDQZKLFKFRQƓUPHGGLYHUWLFXORVLV>WLQ\LQŴDPHG pockets inside the large intestine wall], which was treated with antibiotics. But a very diligent radioloJLVWQRWLFHGDQŏLQFLGHQWDOƓQGLQJŐŋDQRGXOHRQ WKHORZHUOREHRIP\OXQJŋZKLFKKDGQōWEHHQ

there a year earlier. I made an appointment with a pulmonologist at the Mayo Clinic in Phoenix.

October 2024

At Mayo, they seemed fairly convinced that I’d been exposed to Valley fever [also known as coccidioidomycosis]—a lung infection caused by spores in the soil. Some people don’t have any symptoms. But I had a suspicion it was something more. I told them I had been treated for melanoma. They did a biopsy. Two days later, I was out walking my dog, and my phone went off with test results: metastatic melanoma. It felt like a death sentence. I just turned to my husband, thinking we were going to have our 50th anniversary in two years, and all I could say was, “I’m sorry. I’m so sorry.” Somehow, I got grounded, with a lot of support from my husband. I got familiar with good resources. The Google maze was frightening and outdated, but the Melanoma Resource Alliance and the Mayo Clinic were invaluable. Over the next few weeks, I underwent MRI and PET scans, ZKLFKIRUWXQDWHO\FRQƓUPHGWKDWWKHPHWDVWDVLV was only in the lungs, not the brain.

November 2024

I saw an oncologist at the Mayo Clinic who specializes in melanoma. Dr. Mahesh Seetharam was so kindhearted and knowledgeable. I started on a checkpoint inhibitor immunotherapy drug. I started with a low dose every three weeks before going to a higher dose every six weeks, which is more convenient and just as effective. The protocol is for two years. I tolerated it fairly well, with one small very itchy rash. I would also get low-grade fevers and was fatigued.

The good news was, after three infusions, there was complete resolution of the nodule. It was too early to be considered remission, but the immunotherapy was clearly working well.

January 2025

I joined a melanoma support group through Mayo. It’s led by a licensed social worker. We meet once a month in person or on Zoom. I felt supported and comforted. Reddit has a good group too. It’s called Melahomies.

March 2025

As I started on the higher dose, I started to experiHQFHV\PSWRPVFRQVLVWHQWZLWKWK\URLGLWLVLQŴDPmation of the thyroid gland. It’s a known possible side effect. I went into the clinic the next day for CT testing. But I had an adverse reaction to the dye: anaphylactic shock. I had trouble swallowing, my tongue itched, my heart beat fast. They called the ER nurse. I passed out. They gave me epinephrine and VWHURLGVDQGŴXLGV1RZ,NQRZ,ōPDOOHUJLFWRLRGLQH My takeaway from initial diagnosis to the current day: Be your own advocate. If you feel something, say something. Report all your symptoms.

April 2025

We’re planning a trip to see our son’s family in Crete, so I went to an allergist, who gave me epinephrine in case of an allergic reaction; I ordered an allergy bracelet that lists iodine. I had more symptoms, including neck pain, that sent me to the ER, where I was diagnosed with De Quervain thyroiditis, which can be managed with medications.

I’m active. I like to volunteer, travel, take care of my grandchildren. But I am more tired now. I nap. I don’t like that. You know, this is my retirement.

People tell me to think positive. But I have to be prepared that my melanoma can reemerge. I follow the middle path—a phrase borrowed from %XGGKLVPŋDYRLGLQJH[WUHPHVDQGƓQGLQJEDODQFH being neither overly optimistic nor catastrophizing. I worked with a rabbi, who came to our house and offered a really beautiful, centering song. And there’s the Hawaiian ho’oponopono prayer: “I’m sorry. Please forgive me. Thank you. I love you.” It’s just a few words, but it’s beautiful. And I walk the labyrinth, a meditation maze, at the Franciscan center: You go in circles, and at the end, you come to the center. It’s a very peaceful grounding.

I’m learning grace, as opposed to resentment. That’s a big step in my healing process. You know, ZKHQ,ZDVƓUVWGLDJQRVHG,KDGDORRSJRLQJ around in my head, waking me up at night: I have metastatic melanoma. It didn’t serve me well. But after I attended a Zoom conference hosted by the Melanoma Research Alliance, I changed my RXWORRN1RZ,WKLQN,ōPliving with metastatic melanoma.

Garza shares his own experiences with cancer, HIV and addiction.

Daniel

Anal cancer was the latest in a long string of challenges that speaker and activist Daniel Garza has faced since his youth. Thankfully, his (slightly sick!) sense of humor has gotten him through it all.

BY TIM MURPHY PHOTOGRAPHY BY ARI MICHELSON

HE VERY, VERY FUNNY, LOS ANGELES–BASED comedian and health activist Daniel Garza had already gone through so much—always with a dose of humor— when anal cancer came into his life in 2015.

Garza, 54, was born in Mexico to a Mexican mom and a Texas dad of Mexican descent, but they all moved to Dallas when he was 3. Growing up there, he was the target of extreme bullying because of his gay mannerisms (before he even fully knew he was gay), and he was sexually molested before he was 13. When he came out to his family at age 17, his parents took it OK, but his sisters didn’t speak 0+7$%)7"+.703+75!./:7Ľ!703!*05/+)!0$%*#7 .670! 7 out his trauma with alcohol, drugs and tons of sex, some of it without condoms, which led to his getting HIV. He nearly died of AIDS in 2000, but even after stabilizing himself with HIV meds, his substance use was so out of control that he ended up in rehab in 2007.

“It was the best summer vacation I’d ever had,” he says of the experience, “where I learned to be a man and hold myself accountable for what I’d done.” Finally, after that, life proceeded happily, including meeting his current partner, Christian, in 2012. “Life was good,” he says.

But what he didn’t know—what, in fact, many folks living with HIV, as well as their health providers, still don’t know—was that as both a gay man (this goes for transgender women too) and a person with HIV, he was at higher risk for anal cancer than people in the general population. Anal cancer, like cervical cancer, is caused by human papillomavirus (HPV), a common sexually transmitted infection. Garza also didn’t realize that if he wasn’t regularly and properly screened and treated for anal precancer (see sidebar page 14), it could progress to actual invasive cancer, which is often extremely painful to treat.

Unfortunately, that’s exactly what happened. In 2014,,

Garza started having trouble pooping and felt constantly bloated. “It was like everything I ate hit me wrong,” he recalls. (Even tacos! Ask him what brings him joy in life and he swiftly replies, “Carne asada with onions, cilantro and a very hot red sauce!”) A hernia was diagnosed and treated, 1070$!701))57* 71007,.+(!)/7,!./%/0! :7Ľ0_/73$!*7 his doctor gave him a digital rectal exam—and said, “Uh+$:a7`Ľ%/7%/*_07/+)!0$%*#75+17!2!.73*070+7$!.7".+)7*57 )*73$!*7$%/7ł*#!.7%/71,75+1.71008a7 .67&+'!/:

It was no laughing matter, however. Even though an anoscopy rather than a colonoscopy is the proper screening tool for anal cancer, it was the latter, after the digital exam, that subsequently found a tumor in his sphincter. Recalling !2!.50$%*#7$!_ 7(.! 57!!*70$.+1#$87$!70$+1#$087`Of course77$2!7*!.>7_)7*%!(7 :7 .6>a7

His second thought was to announce the news in a video to his online followers, not only to garner support for himself

Anal cancer is rare compared with many other cancers, but factors that raise one’s risk include:

• Having human papillomavirus, or HPV (most sexually active people have some of the more than 200 strains);

• Being the receptive partner in anal sex (which is why rates are higher among gay men and transgender women);

• Having HIV;

• Having a weakened immune system;

• Smoking;

• Having a history of other cancers (especially of the cervix, vagina and vulva, also caused by HPV).

One way to reduce the risk of anal cancer down the road is by getting the HPV vaccine. The Gardasil 9 vaccine protects against nine HPV types that cause cancer or genital and anal warts. The vaccine is recommended at age 11 or 12, with catch-up vaccination through age

but also to educate gay men—particularly Latinos—about anal cancer. “I knew that somebody out there would be like, ^Ľ0_/7)!:7_)7#+%*#70$.+1#$70$08_a7$!7/5/:

*%!(_/7,.0*!.87$.%/0%*87/5/87`*%!(7* 77) !77 commitment to remain lighthearted, to embrace humor and not to sink into negativity and depression.”

Ľ!*7!#*70$!70.!0)!*0873$%$7%*(1 ! 703+73!!'(+*#7 rounds of chemo and a whopping 38 rounds of radiation. It was supposed to be 40, but after 38, Garza was wiped out. “I was dehydrated, I could barely eat and I had radiation burns on my buttocks,” he recalls, pausing slightly before delivering the rim shot: “Talk about a hot ass!”

Ľ%/70.!0)!*073!*07+*7"+.7)+*0$/:7Ľ!7. %0%+*7%*jured his muscles in the treated area so badly that he ended 1,73%0$77ł/01(7D*7*+.)(7,//#!357!03!!*703+7 body parts) that landed him in the hospital with blood loss so severe that he says he died and was brought back to life

26. But some older people can VWLOOEHQHƓWVRDVN\RXUGRFWRU

People with these risk factors should talk to their primary care providers about being screened for dysplasia (precancerous growth) as often as yearly for those living with HIV or every two to three years for those without. You may have to show your provider the American Cancer Society guidelines or federal HIV guidelines explaining that you’re at higher risk—many providers don’t know, and some may even (wrongly) think that a colonoscopy screens for anal cancer.

Screenings include digital exams, anal Pap tests and tests for cancer-causing HPV strains. If the tests come back positive, follow up with a high-resolution anoscopy (during which a small lighted bulb is inserted into the rectum to allow a clear view).

If dysplasia is found, it can usually be easily and mostly

painlessly treated. (It’s a piece of cake compared with actual anal cancer treatment!)

Treatment for more advanced precancer, known as neoplasia, is more complicated.

If invasive anal cancer is diagnosed, treatment may include surgery, radiation, chemotherapy or immunotherapy. Often some combination (such as chemo and radiation) is the best option. Treatment FDQEHGLIƓFXOWDQGSDLQIXO and some people may need a permanent ostomy bag. Recurrence stats are inconclusive; one large analysis found a 27% overall recurrence rate within ƓYH\HDUV

As with many cancers, anal cancer can profoundly affect one’s mental health, quality of life and sense of self. The Anal Cancer Foundation is just one group that offers support and resources to those on treatment, their caregivers and survivors.

three times before spending eight days as an inpatient. “I had anesthesia for the procedure but was still awake,” he recalls, “so I kept making butt jokes, and the doctor was like, ‘Stop, this is serious!’ But the nurse was laughing.”

Ľ!7. %0%+*7 )#!70+7$%/7.!0(7 area was irreversible, so Garza had to be persuaded to have surgery to create a permanent ostomy, an opening, usually on the abdomen, through which waste passes into an attached plastic bag that has to be regularly emptied and changed. “At ł./08773/7(%'!87+,!87*+7358a7$!7

DANIEL’S TIPS FOR COPING WITH (ANY FORM OF!) CANCER

• Have a sense of humor. “My partner Christian and I made butt jokes all the way through my anal cancer treatment, and a nurse told us, Ō.HHSODXJKLQJDQG\RXōOOPDNHLWWKURXJKWKHGLIƓFXOWWLPHVōŐ

• What if you don’t have Daniel’s sense of humor? “You’ve JRWWRVHDUFKIRUWKHVLOYHUOLQLQJV0LQHZHUHWKDW,KDG friends who all knew what I was going through—so I could talk about it with them—my relationship with Christian, the fact that I was going to get better and that it gave me more VWRULHVWRVKDUHLQP\VSHDNLQJDQGVWDQGXSZRUNŐ

• Remember that no matter how awful, treatment will usually give you more life. “Just being able to wake up and take a breath LQWKHPRUQLQJFDQEH\RXUVLOYHUOLQLQJ<HDK\RXPD\EHJRLQJ WKURXJKKHOOŋEXWMXVWNHHSZDONLQJWKURXJKLWŐ

recalls, “but eventually I just couldn’t do diapers anymore.”

A decade on, Garza has had no more major health complications, but he’s still learning how to live with an ostomy bag. “I’ve named him Tommy,” he says, noting that he was inspired by others who urge that one “make friends” with one’s ostomy rather than live in opposition to it. “So we’re buddies, even though we have a very twisted relationship.”

On a more serious note, Garza shares that having a permanently compromised butt and an ostomy bag has cut deeply into his sense of himself as a desirable, sexual being. “It’s caused me a lot of body dysmorphia and a discomfort with being intimate,” he says.

And, of course, that ties into his relationship with Christian, which, he notes, has also been challenged by the two of them winding up in the respective roles of ,0%!*07* 7.!#%2!.:7`Ľ!.!_/772!.57ł*!7(%*!7!03!!*7 bonding over something that nobody else can really understand and codependency.”

Says Christian: “We have been together for 12 years and .!7+0$7%*7+1.7)% 9ł"0%!/87/+7/!47%/7*+7(+*#!.7.%0%(7%*7+1.7 relationship. We have found that a high level of intimacy is ".7)+.!7!*!ł%(70+7+1.7.!(0%+*/$%,:7!7(/+7+0$7)%*tain our own sanctuaries we can retreat to when necessary.”

Amid these complicated feelings, Garza notes a silver lining: “We still like each other’s company and make each +0$!.7(1#$:a7DĽ*'"1((587$!7/5/87$.%/0%*7/$.!/7$%/7 %(%0570+7&+'!7+107!2!*7,%*"1(7* 7 %Ņ1(070$%*#/:E

And Christian has some advice for his fellow caregivers out there: “Give yourselves time for self-care each week. Seek outside help to manage your psychological well-being.

Have a dear friend or family member relieve you for a day or two each week so you can recover and express the emotions you hold back when you are with the one you are caring for. Write Post-it notes and put them in strategic places with reminders of how amazing you are, how you are being of service and that their recovery is not dependent on you.”

Another coping tool in Garza’s arsenal is his seemingly endless ability to turn lemons into lemonade. “All the things I’ve been through, from the addiction to the HIV to the cancer, have given me material to travel the world, perform, tell my story and help other people,” he says. “Yes, I’m vain and I love attention!” he laughs. “But I want to show others that you can walk through this valley with dignity.”

One way he accomplishes that is through his position 3%0$7$!!'57$.%05877*+*,.+ł07"+1* ! 7%*7jhji70$07 aims to spread awareness about anal and colorectal cancer risk, screening, prevention, treatment and peer support, largely within the LGBTQ community. Garza is Cheeky’s director of anal cancer, HIV and HPV advocacy.

“My main job is to go to [LGBTQ] Pride events, health fairs and conferences to share my story and convince people to get screened, teach them about prevention and help both them and their caregivers cope with their treatment and remission,” he explains.

Cheeky Charity is, in fact, just one way Garza has been able to leverage his health journey to earn a living. “Most of these speaking gigs I get paid for,” he says. “You don’t get all this for free!”

But as he pauses after that crack, you can almost hear the beat before his punch line. “Well,” he adds, “you could if you brought me some tacos.” Rim shot! Q

BY THE CANCER HEALTH STAFF

NO ONE SHOULD FACE CANCER ALONE.

Obviously, researchers and physicians are necessary to diagnose and treat the illness, and oncology nurses and navigators can guide people through the continuum of care. But that’s just one element of need.

Luckily, a vast range of skilled and dedicated patient advocates can provide support to people with cancer and their loved ones. ey raise funds and awareness, build programs and communities, share information, schedule appointments, host Zoom calls, ght legal battles, o er grants, locate clinical trials, drive folks to appointments, cook meals and much, much more.

education, prevention, treatment, care and myriad other needs, especially for the poor, marginalized and underinsured.

“Cancer is indiscriminate,” says Angelique Caba, MSW, LCSW-R, vice president of programs and health equity at CancerCare. “Many communities that we serve, who are already vulnerable, no longer feel safe. If there was ever a time to double-down on our health equity work—it is now.” She and others are doing that work.

For our sixth annual Cancer Health 25, we salute patient advocates for their unwavering e orts to support the cancer community. To be clear, our Cancer Health 25 is not a “best of” list or a “most important” ranking. In fact, 25 spots aren’t enough to enumerate the di erent ways people advocate for those a ected by cancer. What we aim to do, however, is highlight—and thank!—a sampling of outstanding patient advocates.

Harold P. Freeman, MD, a former associate director of the National Cancer Institute regarded as the father of patient navigation, described the landscape of cancer care thus: “ e nation has a superb cancer discovery enterprise. However, there is a disconnect between what we discover and what we deliver.”

Patient advocates ll this gap by providing support,

It’s an honor to amplify the work of these 25 patient advocates. To them and all the others out there: We salute you!

SENATOR TAMMY BALDWIN Madison, Wisconsin

Legislators wield the unique power to pass laws and set budgets that directly a ect cancer care. ey also make headlines. When Senator Tammy Baldwin (D–Wisc.) attended this year’s State of the Union, she invited a woman with metastatic breast cancer who relies on Medicaid for treatment—a public gesture to highlight how proposed health care cuts could harm everyday Americans. e senator is a longtime supporter of bills to provide breast and cervical cancer screenings, reduce health disparities and fund national health programs. “Baldwin continues to be one of the most consistent and impactful champions of [the National Institutes of Health] and the cancer research community on Capitol Hill,” writes the American Association of Cancer Research, which this spring honored the lawmaker with a Distinguished Public Service Award. “Cancer doesn’t see party lines, and neither should our support for helping more Americans get access to the care and treatment they need,” Baldwin tells Cancer Health. “I’m proud to be their partner in this ght.”

LAURA BEILKE Glendale, Wisconsin

As a youngster, Laura Beilke lost her mother to cancer. is experience fueled her decision to become a patient advocate. Today, she’s a sta attorney at Triage Cancer, a national nonpro t that helps people with the legal and practical issues that arise throughout the cancer experience. Beilke uses her extensive legal background and expertise to ensure that individuals diagnosed with cancer as well as their caregivers have the information they need to make the best decisions for themselves. “When someone is diagnosed with cancer, they are faced with so many di erent things: decisions to make and information to learn,” she says. “Trying to juggle it all can be incredibly overwhelming.”

LINDA BURHANSSTIPANOV Pine, Colorado

When Linda Burhansstipanov, DrPH, a Cherokee woman who’d been working in public health and teaching at universities since 1971, started researching cancer at the National Institutes of Health in 1989, the Indian Health Service’s lone oncologist was based in Alaska. Burhansstipanov’s research demonstrated that her Native brothers and sisters were being diagnosed late, getting inadequate care and dying young of cancer. But medical resources were scarce. So she founded Native American Cancer Initiatives. e national grassroots model trains nonmedical and medical oncology patient navigators to build trust and help American Indians and Alaskan Natives overcome the obstacles that interfere with prevention, early screening and treatment.

ANGELIQUE CABA New York City

Based in New York City, CancerCare provides vital programs nationwide, including individual counseling, support groups, resource navigation services, education and nancial assistance. As the vice president of programs and health equity, Angelique Caba, MSW, LCSW-R, oversees CancerCare ’s social services department and extensive portfolio of programs while expanding access to quality care for underserved communities. Caba has decades of experience in social work—notably helping children and those with special needs—but when her husband was diagnosed with cancer, Caba began to focus more on cancer issues. She’s a member of the Association of Oncology Social Work and the American Society of Clinical Oncology. At CancerCare, she has helped build programs for people who speak Spanish, and she promotes diversity, equity and inclusion.

“I show up so that every person who looks like me, loves like me and lives like me is seen, heard and counted.”

Paula Chambers Raney, colorectal cancer survivor and advocate

PAULA CHAMBERS RANEY Houston

“As a Black queer woman, I know rsthand how the system can fail people who look like me,” says cancer survivor Paula Chambers Raney. Indeed, despite experiencing severe colorectal cancer (CRC) symptoms for two years, she was misdiagnosed and mistreated before ending up in the ER; eventually, surgeons removed a baseball-sized tumor. She was 44. Now, she’s an outspoken activist. As a hope coordinator for Fight CRC and a patient advocate with the National LGBTQIA+ Cancer Network, among other roles, Raney educates minority populations nationwide and ghts for equitable treatment. “I carry both the burden and the honor of advocacy,” she says. “I show up so that every person who looks like me, loves like me and lives like me is seen, heard and counted in conversations that have ignored us for too long.”

KYLE DELEON Austin

ERNIE DAVIS

Pittsburgh

Nearly half of cancer patients face medical debt due to their diagnosis and treatment—even those with insurance. As the Leukemia & Lymphoma Society’s senior director of government a airs for the Northeast, Ernie Davis built strong, trusted relationships with lawmakers that gave rise to an invaluable network that helped him navigate the complex legislative process. His hard work alongside that of his advocacy partner, Jen McGarry, and many other state coalition partners resulted in current work on the passage of laws in seven states that protect patients from harmful medical debt. “I feel incredibly fortunate to be a part of the team in the Leukemia & Lymphoma’s O ce of Public Policy that works with federal and state lawmakers to pass policies that improve the lives of our patients and their families,” Davis says.

“Cancer is what brought me here,” says Kyle DeLeon about his work as a grassroots manager for the American Cancer Society Cancer Action Network, where he’s the senior manager of state and local advocacy operations. In 2018, two days before his 29th birthday, DeLeon discovered a lump that turned out to be testicular cancer. Undergoing treatment sparked in him an empowering new sense of awareness and purpose. In his work, he began drawing on his background as a queer Latino testicular cancer survivor to make elected o cials aware of those who have historically not had a seat at the table in cancer advocacy. “ e overarching context of our ongoing mission is to ensure equitable access to care for all,” he says.

TALAYA DENDY

Minneapolis

As a cancer doula, Talaya Dendy bridges the gap between the medical and emotional sides of cancer. When diagnosed with Hodgkin lymphoma in 2011, she noticed that emotional support was absent from her treatment plan. Today, a cancer thriver and board-certi ed patient advocate, Dendy supports people with cancer via compassionate, personalized care. She guides individuals to work through their emotions and fears, improve communication with loved ones and care teams, integrate holistic wellness and con dently navigate the health care system. Her podcast, Navigating Cancer TOGETHER , o ers a sense of community and inspiration for anyone a ected by cancer.

ANDREA DWYER Denver

As chair of the American Cancer Society’s Patient Navigation Roundtable and a trustee of the Academy of Oncology Nurse and Patient Navigators, Andrea Dwyer, MPH, is a driving force in the movement to make navigation available to every person with cancer who needs it. Her research demonstrates that navigation improves patient outcomes. While pilot navigation programs often rely on grants and volunteers and may be vulnerable to budget cuts, Dwyer’s research supports sustainable reimbursement systems, including fair wages for full-time navigators. As director of the Colorado Cancer Screening Program at the University of Colorado Cancer Center and adviser to Fight Colorectal Cancer, she is also a leader in cancer screening and prevention.

HAROLD P. FREEMAN Atlanta

Known as the father of patient navigation, Harold P. Freeman, MD, pioneered that concept in 1990 while at Harlem Hospital, where he observed that poor and uninsured people and minorities were more likely to present with late-stage cancer and require guidance along the entire continuum of care. “If people meet barriers in getting through the health care system,” he recalled to e Cancer Letter, “then maybe we should navigate them.” He’s a professor of surgery emeritus at Columbia University, the founder of the Breast Examination Center of Harlem and the Ralph Lauren Center (both programs of Memorial Sloan Kettering Cancer Center) and a past chairman of the President’s Cancer Panel, among many titles and accolades. He currently serves as editor emeritus of the Journal of Oncology Navigation & Survivorship. No wonder OncLive named Freeman a “Giant of Cancer Care.”

“If people meet barriers in getting through the health care system, then maybe we should navigate them.”

Harold P. Freeman, MD, professor of surgery emeritus

BETH GARCIA Houston

At MD Anderson Cancer Center, vice president of patient experience Beth Garcia, RN, MPA, develops programs and initiatives implementing human-centered design principles to address the needs of patients and their families. Garcia carries out impactful improvements in patient experience through advocacy, education and emotional intelligence. For example, Garcia and colleagues spearheaded MD Anderson’s Oncology Nurse Navigator program, which connects people with cancer and their families with passionate caregivers who can answer questions, o er resources and provide emotional support. Garcia also helped develop the askMDAnderson Call Center, which helps people make informed decisions about their cancer care experience.

SHARON GENTRY Lewisville, North Carolina

Sharon Gentry, MSN, RN, editor-in-chief of the Journal of Oncology Navigation & Survivorship, was an experienced oncology nurse when in 1999 she was tapped to create a breast cancer patient navigation program in the Winston-Salem area. e Novant Health program, which she ran for 20 years, became a national model. Within three days of a biopsy, each breast cancer patient is o ered a navigator to coordinate and streamline care, which improves outcomes, increases patient satisfaction and reduces costs. A national voice for the power of patient navigation, Gentry has been active in leadership at the Academy of Oncology Nurse and Patient Navigators since its inception in 2009 and was awarded its lifetime achievement award in 2019.

MICHAEL S. HEIMALL Germantown, Maryland

As president and CEO of HealthWell Foundation, Michael S. Heimall leads the nonpro t’s e orts to provide a nancial lifeline to our nation’s underinsured (to learn more, see our Your Team pro le on page 30). He previously served as executive director of the Washington, DC, Veterans A airs Medical Center and brings his budgetary and advocacy knowledge to serve patients in nancial need. Since its founding in 2003, HealthWell has assisted over 1 million patients, including nearly 400,000 people with cancer. e charity organization o ers more than 40 oncology funds, such as a newly launched grant for individuals with neuroendocrine tumors, that provide help with medication co-payments and insurance premiums, out-ofpocket expenses and other costs. Under Heimall’s leadership, HealthWell provides a lifesaving safety net for when health insurance is not enough.

RITCHIE JOHNSON Sugar Land, Texas

Ritchie Johnson, MBA, RN, launched the Chris “CJ” Johnson Foundation in memory of her son, who died of renal medullary cancer (RMC), a rare and aggressive type of kidney cancer that primarily a ects young African Americans with sickle cell trait. A relentless advocate, Johnson pushed for increased RMC awareness, funds and scienti c attention, which led to the formation of multiple clinical trials to study the disease. A member of the Kidney Cancer Association advisory board, she also advocates at the federal level. is year, the foundation plans to nalize and distribute a patient education booklet about RMC. Johnson exempli es how one advocate can make a positive impact on the lives of many.

JENNIFER M. KALISH Philadelphia

Beckwith-Wiedemann syndrome (BWS) is a genetic disorder that causes overgrowth, either in parts of the body or the whole body, and increases cancer risk, notably kidney and liver cancers during childhood. To better understand this anomaly and support those a ected by BWS, in 2014, pediatric geneticist Jennifer M. Kalish, MD, PhD, founded the BWS Registry at the Children’s Hospital of Philadelphia. e registry collects clinical data and samples from patients, aiding in the development of clinical management approaches, including tumor screening guidelines. Kalish also launched BWS conferences for families, physicians and researchers, fostering community, sharing knowledge and building support; the fth such conference takes place in July. e recipient of a clinical investigator grant from the Damon Runyon Cancer Research Foundation and several grants from Alex’s Lemonade Stand Foundation, among others, Kalish illustrates the power of a physician who advocates for her patients.

JULIE MANSFIELD

San Mateo, California

After being treated for breast cancer a few years ago, Julie Mans eld realized how overwhelming it was to try to heal while self-managing her care, navigating day-by-day needs and communicating with concerned loved ones. e experience led the passionate advocate for breast cancer awareness and prevention to launch Wellnest, a free digital platform at InspireWellnest.com that allows users to share all their needs and updates in one spot. “Wellnest is a unique online community built to simplify the chaos of crisis,” Mans eld says. “By combining health updates, crowdfunding, registries and coordinated care in one place, it empowers loved ones to show up in the ways that matter most.”

ANA MELENDEZ

Lorain, Ohio

Serving a mostly Latino community at El Centro de Servicios Sociales Inc. (in English, “the center for social services”) in Lorain, Ohio, patient navigator Ana Melendez guides her Spanish-speaking clients, many of whom are migrants or lack insurance, through a system that primarily provides services in English. Melendez explains health information, makes appointments, arranges transportation, helps manage nancial issues and provides information about treatment, including access to clinical trials at the nearby Cleveland Clinic, University Hospitals and Mercy Health Hospitals. She often accompanies her clients to their appointments and serves as an interpreter. No matter the need, she is there to help.

AMANDA MONTEIRO

New York City

In 2018, Amanda Monteiro, LMSW, lost her 20-month-old baby girl, Edie, to pediatric acute myeloid leukemia. Today, she’s a childhood cancer and palliative care advocate and a volunteer ambassador for the Leukemia & Lymphoma Society’s Dare to Dream Project and the Pediatric Acute Leukemia Master Clinical Trial. Monteiro has spent countless hours sharing her family’s story with lawmakers, supporting proposed legislation to help children with cancer overcome barriers and delays to treatment and fundraising on behalf of children and families a ected by the disease. “I promised to do everything in my power to prevent another parent from experiencing this devastating tragedy,” says Monteiro.

“I make sure that people have the education they need as well as the resources to understand what treatments are available to them.”

Matthew Reiss, GO2 for Lung Cancer

BONNY MORRIS Advance, North Carolina

“Rural areas have higher cancer death rates, and we’ve seen over and over how access makes a di erence,” says Bonny Morris, PhD, RN, who was born and raised in rural North Carolina. By seventh grade, she knew she wanted to become an agent of change. “Having someone who can break down those barriers, like a patient navigator, can be a great equalizer.” Now the vice president of navigation at the American Cancer Society, Morris is part behavioral scientist and part clinical team member as well as a patient advocate. She develops programs and research focused on strategies that integrate digital health and patient navigation to optimize cancer care delivery. “I’m always looking for opportunities to innovate, so that we don’t continue to see disparities in cancer mortality based on where we live, the color of our skin or the language we speak,” she says.

“I feel incredibly fortunate to work with lawmakers to pass policies that improve the lives of our patients and their families.”

Ernie Davis, The Leukemia & Lymphoma Society

MATTHEW REISS Cohoes, New York

Comprehensive biomarker testing is an increasingly important element in deciding the best cancer treatment options. But how can typical patients make sense of this complicated science? At GO2 for Lung Cancer, they speak one-on-one with specialists, like Matthew Reiss, MSE, PhD, the manager of precision medicine and navigation. He helps clients access biomarker testing and then explains the resulting analysis of their tumor’s genetic makeup and whether they’re candidates for drugs that target those genes, known as precision medicine. rough GO2’s LungMATCH program, Reiss also connects clients with clinical trials. “It’s really di cult to navigate all the information out there,” Reiss acknowledges. “I make sure that people have the education they need as well as the resources to understand what treatments are available to them.”

SARAH SCHILTZ San Francisco Bay Area

A dedicated advocate for patients, families and care teams dealing with liver cancer, Sarah Schiltz drives positive change and strives for a cure. As board director for Blue Faery: e Adrienne Wilson Liver Cancer Association, Schiltz provides support, guidance and information for those with liver cancer, their advocates and caregivers. Her passion stems from personal experiences and the loss of her husband, Greg, to liver cancer in 2020. Schiltz further extends her impact as board chair of the nonpro t Cancer CAREpoint, o ering personalized cancer support, education and resources to those in the Bay Area.

KAREN SHAFFER

Manalapan, New Jersey

In the world of prostate cancer— the second most common cancer among men, after skin cancer—you could say women are the unsung heroes. “ is journey is a tough one for all of us, not just for the patients but also for the spouses and partners,” says Karen Sha er, who lost her husband to the disease. “Sometimes we as women need a place to share our experiences, ask questions and get information in a comfortable and understanding atmosphere.” Sha er helped create that space and now moderates it twice monthly: the Online Women’s Support Group at the prostate cancer nonpro t Fans for the Cure. A former middle school teacher and public relations professional, Sha er also serves as the organization’s community and communications contact, connecting the charity to communities, especially in areas that lack access to quality health care, and raising awareness of prostate cancer and the importance of early detection.

GARRETT WHITLOCK Boston

Celebrities and sports heroes can parlay their fame to raise funds, educate and advocate for those with cancer. ink of Katie Couric televising her colonoscopy and cofounding Stand Up To Cancer or Olivia Munn recently sharing her breast cancer journey. For the third year, Boston Red Sox pitcher Garrett Whitlock is serving as the Jimmy Fund Captain to support the DanaFarber Cancer Institute. Launched in 1948 and named after a pediatric patient treated by pioneering cancer doc Sidney Farber, the fund partnered with the Red Sox in 1953 and continues its winning streak. Whitlock visits patients, participates in fundraising events, raises awareness and helps strike out cancer.

“This journey is a tough one for all of us, not just for the patients but also for the spouses and partners.”

Karen Shaffer, Fans for the Cure

HOWARD WOLINSKY Chicago

When Howard Wolinsky learned he had prostate cancer 15 years ago at age 63, his doctor wanted to cure him by removing the gland. But Wolinsky, a Pulitzer Prize–nominated medical journalist for the Chicago Sun-Times, did his research. Learning he had a low-risk cancer, he chose not to have surgery or radiation and instead opted for a thenuncommon modality called active surveillance, a type of monitoring. He has yet to need treatment. But he is a vocal advocate for others like him as they navigate uncertainty and anxiety. Working with physicianscientists, he has coauthored dozens of articles in medical journals. Wolinsky is the editor of the Substack newsletter eActiveSurveillor.com. He also cofounded the support group Active Surveillance Patients International and a virtual support group for the AnCan Foundation.

BRUCE WRIGHT Ladera Ranch, California

e Veterans Administration recognizes Agent Orange as the “presumptive cause” of the two cancers, chronic lymphocytic leukemia (CLL) and prostate cancer, that Bruce Wright, 80, has survived. He was deployed three times to Vietnam, twice as a naval ight o cer. Yet it took him three years to get approved for VA disability bene ts. Determined that no fellow vet should face those obstacles, Wright has helped over 115 of them secure disability bene ts. He chairs the patient advisory board at the CLL Society, runs 10 support groups and, of course, works with veterans with CLL. But he’ll help any vet with any cancer—indeed, anyone with cancer—any time. Q

IF YOU HAVE CLL, LET CALQUENCE

fighting.

AND YOU CAN FOCUS ON THE THINGS YOU’RE LOVING.

Important Product Information

CALQUENCE is a prescription oral treatment for adults with chronic lymphocytic leukemia or small lymphocytic lymphoma. Can cause serious side effects including: serious infections, bleeding problems, decrease in blood cell count, new cancers, heart rhythm problems, and liver problems. Some may lead to GHDWK7HOO\RXUGRFWRULI\RXH[SHULHQFHLQIHFWLRQVVXFKDVŴXOLNHV\PSWRPVXQH[SHFWHGEOHHGLQJVXFK DVEORRGLQ\RXUVWRRORUXULQHKHDUWUK\WKPSUREOHPVVXFKDVIDVWRULUUHJXODUKHDUWEHDWRUOLYHUSUREOHPV such as stomach pain, dark urine or yellowing of your skin. Use sun protection when outside.

Please read Brief Summary of Prescribing Information on adjacent page. You are encouraged to report the negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088

To learn more, visit CALQUENCE.com or scan the QR code with your phone’s camera. ,I\RXFDQQRWDIIRUG\RXUPHGLFDWLRQ$VWUD=HQHFDPD\EHDEOHWRKHOS9LVLW$VWUD=HQHFDXVFRPWRƓQGRXWKRZ

Not an actual patient. CALQUENCE is

PATIENT INFORMATION

CALQUENCE ® (KAL-kwens) (acalabrutinib) tablets

What is CALQUENCE?

• CALQUENCE is a prescription medicine used to treat adults with: chronic lymphocytic leukemia (CLL) or small lymphocytic lymphoma (SLL). It is not known if CALQUENCE is safe and effective in children.

Before taking CALQUENCE, tell your healthcare provider about all of your medical conditions, including if you:

• have had recent surgery or plan to have surgery. Your healthcare provider may stop CALQUENCE for any planned medical, surgical, or dental procedure.

• have bleeding problems.

• have or had heart rhythm problems.

• have an infection.

• have or had liver problems, including hepatitis B virus (HBV) infection.

• are pregnant or plan to become pregnant. CALQUENCE may harm your unborn baby and cause problems during childbirth (dystocia).

° If you are able to become pregnant, your healthcare provider may do a pregnancy test before you start treatment with CALQUENCE.

° Females who are able to become pregnant should use effective birth control (contraception) during treatment with CALQUENCE and for 1 week after the last dose of CALQUENCE.

• are breastfeeding or plan to breastfeed. It is not known if CALQUENCE passes into your breast milk. Do not breastfeed during treatment with CALQUENCE and for 2 weeks after your last dose of CALQUENCE.

Tell your healthcare provider about all the medicines you take, including prescription and over-the-counter medicines, vitamins, and herbal supplements. Taking CALQUENCE with certain other medications may affect how CALQUENCE works and can cause side effects. Especially tell your healthcare provider if you take a blood thinner medicine.

How should I take CALQUENCE?

• Take CALQUENCE exactly as your healthcare provider tells you to take it.

• Do not change your dose or stop taking CALQUENCE unless your healthcare provider tells you to.

• Your healthcare provider may tell you to decrease your dose, temporarily stop, or completely stop taking CALQUENCE if you develop certain side effects.

• Do not switch (interchange) your CALQUENCE tablets with CALQUENCE capsules.

• Take CALQUENCE 2 times a day (about 12 hours apart).

• Take CALQUENCE with or without food.

• Swallow CALQUENCE tablets whole with a glass of water. Do not chew, crush, dissolve, or cut tablets.

• If you miss a dose of CALQUENCE, take it as soon as you remember. If it is more than 3 hours past your usual dosing time, skip the missed dose and take your next dose of CALQUENCE at your regularly scheduled time. Do not take an extra dose to make up for a missed dose.

What are the possible side effects of CALQUENCE?

CALQUENCE can cause serious side effects, including:

• Serious infections have happened in people treated with CALQUENCE and may lead to death. Your healthcare provider may prescribe certain medicines if you have an increased risk of getting infections. Tell your healthcare provider right away if you have any signs or symptoms of an infection, including fever, chills, or flu-like symptoms.

• Bleeding problems (hemorrhage) have happened in people treated with CALQUENCE and can be serious and may lead to death. Your risk of bleeding may increase if you are also taking a blood thinner medicine. Tell your healthcare provider if you have any signs or symptoms of bleeding, including: blood in your stools or black stools (looks like tar), pink or brown urine, unexpected bleeding, or bleeding that is severe or you cannot control, vomit blood or vomit that looks like coffee grounds, cough up blood or blood clots, dizziness, weakness, confusion, changes in your speech, headache that lasts a long time, or bruising or red or purple skin marks.

• Decrease in blood cell counts. Decreased blood counts (white blood cells, platelets, and red blood cells) are common with CALQUENCE, but can also be severe. Your healthcare provider should do blood tests to check your blood counts regularly during treatment with CALQUENCE.

• Second primary cancers. New cancers have happened in people during treatment with CALQUENCE, including cancers of the skin or other organs. Your healthcare provider will check you for skin cancers during treatment with CALQUENCE. Use sun protection when you are outside in sunlight.

• Heart rhythm problems (cardiac arrhythmias) have happened in people treated with CALQUENCE, and can be serious or lead to death. Tell your healthcare provider if you have any of the following signs or symptoms: fast or irregular heartbeat, dizziness,

feeling faint, chest discomfort, or shortness of breath.

• Liver problems. Liver problems have happened in people treated with CALQUENCE, and can be severe or life-threatening, or lead to death. Contact your healthcare provider if you experience stomach pain or discomfort, urine of dark color or yellowing of your skin. Your healthcare provider will request tests to monitor your liver function during treatment with CALQUENCE.

The most common side effects of CALQUENCE include: diarrhea, upper respiratory infection, headache, muscle and joint pain, lower respiratory infection, and tiredness.

These are not all of the possible side effects of CALQUENCE. Call your doctor for medical advice about side effects. You may report side effects to FDA at 1-800-FDA-1088.

How should I store CALQUENCE?

• Store CALQUENCE at room temperature between 68°F to 77°F (20°C to 25°C).

Keep CALQUENCE and all medicines out of the reach of children.

General information about the safe and effective use of CALQUENCE.

Medicines are sometimes prescribed for purposes other than those listed in a Patient Information leaflet. Do not use CALQUENCE for a condition for which it was not prescribed. Do not give CALQUENCE to other people, even if they have the same symptoms you have. It may harm them. You can ask your healthcare provider or pharmacist for more information about CALQUENCE that is written for health professionals.

What are the ingredients in CALQUENCE?

Active ingredient: acalabrutinib

Inactive ingredients:

Tablet core: low-substituted hydroxypropyl cellulose, mannitol, microcrystalline cellulose, and sodium stearyl fumarate.

Tablet coating: copovidone, ferric oxide yellow, ferric oxide red, hypromellose, medium-chain triglycerides, polyethylene glycol 3350, purified water, and titanium dioxide.

Please see full Prescribing Information, including Patient Information.

Sustained by Strong Faith, Family and Medical Advances

Minnesotan Barb Skurdahl was on vacation to see a life-size Noah’s Ark when she unexpectedly learned that she was living with chronic lymphocytic leukemia.

A TRIP TO THE ER IS NOT ON anyone’s vacation itinerary. But Barb Skurdahl, 75, of north central Minnesota, was forced to take such a detour during a trip to Kentucky, where she and her husband wanted to explore Ark Encounter, the Bible history theme park featuring a life-size Noah’s Ark. Unexplained pains in Barb’s arm led to a stop at urgent care. The cause turned out to EHSOHXULV\DQLQŴDPPDWLRQRI the lung. But during the exam a “very astute ER doctor ordered several vials of blood be taken,” Barb recalls. “The tests revealed that my white blood count was at 282,000, and a normal range is between 4,000 and 11,000. Yikes! He announced that I had chronic lymphocytic leukemia [CLL].”

That was in 2021. Today, Barb LVDUHWLUHGŴLJKWDWWHQGDQWDQG executive assistant who works part-time as a bank teller and enjoys life with her husband in Crosslake, a recreational resort community. She keeps her CLL in check with daily pills—a BTK inhibitor, which blocks a protein called Bruton tyrosine kinase that is known to promote cancer growth—and regular checkups with her care team. “Keep those appointments,” Barb advises. “Fortunately, over the course of this strenuous journey, I have

been asymptomatic,” she adds. “I learned that my paternal grandmother also had CLL, living to her late 80s. Even though there is no cure for CLL, the good news is that it can be managed. I won’t die from it— praise God!”

Cancer Health interviewed Barb for the latest installment of our Can Heal column— the empowering phrase “Can Heal” is right there in our title. She shares more of her experiences and insights.

First off, did you and your husband get to visit the Ark replica before your vacation was cut short?

Barb enjoys local nature and lake activities.

Yes, we visited the Ark before I became ill. It’s the story of Noah’s obedience and faith in God’s plan for humanity. Noah did not panic in extreme circumstances and instead focused upon the faithfulness of God’s care, which is similar to what I am doing each day.

How did you initially react to your diagnosis?

It was, of course, shocking and potentially life-shattering. Say it ain’t so, doc! The “C word”! Surely, not me! How can this be true without any symptoms? During the long and somber drive home, believe it or not, my soul had a sense of calm, which surprised me. And yes, I believe the source of it was the Holy Spirit. The more I thought about

this situation, the more determined I became to confront it rationally instead of emotionally. What good would it do WRƓOOP\H\HVZLWKWHDUV and be a drama queen? I knew the Lord would guide me if I was willing to follow His lead. This was surely a sudden turn of events in my life plan. Time to reassess my priorities.

EVEN THOUGH THERE IS NO &85()25&// THE GOOD NEWS IS THAT IT

What was your plan once you returned home? Many people with CLL remain in a “watch and wait” period until they need to start treatment. I consulted with a physician, ZKRFRQƓUPHGWKH&// diagnosis. Knowing that it was treatable helped lessen my anxiety. I was assigned a long-distance oncologist near Buffalo, New York, because our clinic didn’t have one on staff. We had Zoom meetings and phone calls to determine when the medication should begin. His manner of speaking was always reassuring and was grounded in the latest cancer research facts. Looking back, I am so thankful that I did not delay getting to the right doctor. For the past two years, I have seen a local oncologist. I use a cancer medication [two pills daily], and my blood counts have fallen to normal levels. The EHQHƓWVRIFRQWLQXDOFKHFNXSV to my peace of mind and my body have proven to be worth every bit of effort.

Aside from medical treatment, what has helped you heal on this journey?

Barb works as a bank teller.

I have other health issues, such as skin cancer and arthritis, but I feel good enough to work and thrive here in God’s country. On calm, sunny days, my husband and I launch our pontoon boat into a chain of lakes to enjoy nature. I read daily, especially biographies, and at the top of my booklist are best sellers like The Coming Golden Age by Dr. David Jeremiah. My spirit has been empowered with hopeful truths that teach me the best way to live now and in the

life to come. To this day, I still enjoy cooking meals while overlooking a lake with inspiring views, socializing with friendly neighbors, watching gorgeous sunsets and serving customers at a local bank. I’m so blessed to have the emotional support of my family, dear friends, coworkers, experienced medical team and, most of all, Jesus, the great physician. They are all readily accessible if I need their support, comfort, a listening ear and unconditional love. My strong &KULVWLDQIDLWKKDVVXVWDLQHG me through this ordeal.

What advice would you leave for anyone facing a cancer diagnosis?

To be honest, there have been days when negative self-talk about the future has tried to invade my positive outlook. When it arrives and threatens to take me down, I deliberately redirect it to the trash bin and replace it with researched information that gives me the energy and drive to continue leading a normal life. I am also thankful for the opportunity to share my ex perience with others, and I encourage cancer patients to stay productive and explore all options for treatment. Without a doubt, we live in a time of extraordinary medical advances that are giving fresh hope to many. Q

Meet a Financial Helper

Fred Larbi is the chief operations officer at the HealthWell Foundation, a charitable organization that helps underinsured patients cover their treatment expenses.

What is the HealthWell Foundation?

:HDUHDQDWLRQDOQRQSURƓW RUJDQL]DWLRQWKDWUHGXFHVƓQDQcial barriers to care for America’s underinsured by helping them access critical medications and treatments. We recognize that even though the manufacturers of medications have patient assistance programs, they’re not able to help those who have public insurance. That’s the law. Due to anti-kickback statutes, they are not able to help patients who have Medicare. For these patients, insurance covers their WUHDWPHQWEXWWKH\KDYHVLJQLƓcant out-of-pocket costs that become so cost-prohibitive that they have to decide whether to pay their mortgage, put food on the table or pick up their medications. So a lot of our funds cater to patients who have Medicare

and cannot get assistance from the manufacturer. We can help those patients with their co-pays, premiums, deductibles and out-of-pocket expenses.

How do you connect people

ZLWKƓQDQFLDOKHOS"

We have over 95 disease funds designed to help people who have been diagnosed with those diseases. About 33 of our funds are oncology funds. It’s pretty simple criteria: A patient has to be diagnosed with a disease that we have a fund for, and they have to meet income criteria— which is typically 400% to 500% of the federal poverty level—and they must have some form of insurance, although some funds

VSHFLƓFDOO\UHTXLUH0HGLFDUH Once they meet these criteria, we give them a grant for a full year. We also issue a pharmacy card they can use for co-pays when they go to the pharmacy.

How is HealthWell funded?

How can people who are dealing with cancer learn more and get help?

HealthWellFoundation.org, our website, lists the disease funds that may apply to patients and information about the assistance we provide. I’d also encourage patients to speak ZLWKWKHLUƓQDQFLDOQDYLJDWRUV social workers and providers about how HealthWell can support them. About 60% of our referrals come from physicians and pharmacies who know about HealthWell and refer patients to us.

What inspires you in this work?

Helping patients in need inspires Fred Larbi.

Over 90% of our funding comes from corporations, pharmaceutical manufacturers mostly. But we also have a growing list of individual donors that includes patients, family members and anybody who wants to support HealthWell. That portion of our donor base has grown over the years.

The thing that inspires me the most is my team, the folks who are on the forefront every single day supporting the patients who are in need. The compassion with which they help patients is contagious. I caught that bug a long time ago, when I myself was on the phones as a reimbursement case advocate helping patients at a different organization. My job was to help patients navigate their insurance and also get help with their co-payments. That’s when I realized that I love helping patients. It’s inspirational for me when I see my team doing the same thing that I remember doing: helping patients and reducing barriers to care. Q

Who’s on your team? cancerhealth.com/team

Self-Care Tips for Cancer Advocates

Whether you’re advocating for yourself, a loved one or the cancer community at large, these tips can help you stay motivated and maintain emotional resilience.

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Nourish your body. ([HUFLVHUHJXODUO\HDW ZHOOEDODQFHGPHDOV VWD\K\GUDWHGDQGJHW HQRXJKUHVW7DNLQJ FDUHRI\RXUERG\ZLOO LQFUHDVH\RXUHQHUJ\ LPSURYH\RXUPRRG DQGERRVW\RXULP PXQHIXQFWLRQ

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Practice relaxation. )HHOLQJDQ[LRXVRU WHQVH"7U\PLQGIXOQHVV PHGLWDWLRQGHHS EUHDWKLQJH[HUFLVHVRU \RJDWRUHGXFHVWUHVV DQGFDOPWKHPLQG ZKLFKZLOOKHOSNHHS \RXFHQWHUHGDPLG FKDOOHQJLQJZRUN

Acknowledge your emotions. ,WōV2.WRH[SUHVV ZKDWHYHUHPRWLRQV\RX DUHIHHOLQJLQFOXGLQJ VDGQHVVIUXVWUDWLRQ RUJULHI,JQRULQJ\RXU IHHOLQJVFDQQHJDWLYHO\ DIIHFW\RXUPHQWDODQG SK\VLFDOKHDOWK

Set boundaries. <RXFDQōWEHDQHIIHF WLYHDGYRFDWHLI\RXōUH EXUQHGRXW.QRZ\RXU limits and establish FOHDUERXQGDULHV WRHQVXUH\RXKDYH WLPHIRU\RXUVHOI

Pursue your passions. ,WōVLPSRUWDQWWRWDNH the time to engage in activities or hobbies

WKDWEULQJ\RXMR\DQG KHOS\RXXQZLQGVXFK DVSDLQWLQJJDUGHQLQJ UHDGLQJRUFRRNLQJ

Celebrate progress. $FNQRZOHGJHWKHVPDOO YLFWRULHVDORQJWKHZD\ WRUHDFKLQJ\RXUJRDO &HOHEUDWLQJHYHQPLQRU VXFFHVVHVFDQSURYLGH motivation and a sense RISXUSRVH

Find support. 6HHNVXSSRUWLYHIULHQGV FROOHDJXHVRUDPHQWRU 7DONLQJWRRWKHUVZKR XQGHUVWDQGWKHPDQ\ challenges of cancer DGYRFDF\FDQSURYLGH PXFKQHHGHGVRODFH.

SUMMER LOVIN’

Have yourself a blast with sun-safe clothing, plant-based skin care and fundraising eyewear. Plus: Cancer-themed beach reads!

The women-owned and -operated natural skin care line My Girls offers chemical-free products specially formulated with sustainable plant-based ingredients to alleviate such side effects of cancer treatments as rashes, dryness and burns. The Skin Care Comfort Gift Set ($99.99) features a facial brightening serum, a barrier cream, a scar care spray, an oncologistrecommended radiation burn cream and more. Restore and smooth skin using natural ingredients, like calendula, coconut, rose, jojoba and avocado oil.

“Eve is a successful novelist who wakes up one day in a hospital bed with no memory of how she got there. Her husband, never far from her side, explains that she has had an operation to remove the large, malignant tumor growing in her brain.” This attention-grabbing blurb promotes Sophie Kinsella’s What Does It Feel Like? ($13.99) . Beloved for her bestselling rom-com novels, including Confessions of a Shopaholic, Kinsella disclosed last year that her real-life brain cancer diagnosis had inspired her ƓFWLRQDOQRYHOOD7KHFRPELnation of cancer, resilience and comedy makes this a surprisingly good beach read.

The perfect sunglasses make you look cool, don’t drain your wallet, protect your eyes, can withstand active days outdoors and support cancer research. Thanks to its Breast Cancer Awareness Collection, Tifosi sunglasses check all the boxes. Known for affordable sports eyewear, Tifosi donates RISURƓWVIURPWKHFROOHFtion to the Lynn Sage Breast Cancer Foundation, D&KLFDJREDVHGQRQSURƓW that invests in early-career doctors and innovative UHVHDUFK&KRRVHIURPƓYH prescription-ready styles ($25 to $59.95).

Enjoy nature worry-free with Outdoor Research’s diverse selection of sun protection items, including UPF-rated sun hats, neck gaiters DQGHDUEDQGV(PEUDFHVXQQ\GD\VFRQƓGHQWO\ZLWKActiveIce Sun Sleeves ($35), which provide the highest sun-protective coverage via a moisture-wicking and cooling fabric. Or try ActiveIce Sun Gloves ($30) DƓQJHUOHVVRSWLRQIHDWXULQJDJULSS\SDOPDQGD83)SOXV sun protection rating that’s perfect for driving, walks and more.

32

In 3rd Floor Summer: A Mother’s Memoir of Her Journey Battling Cancer ($19.99), Mara Solomon chronicles her life after receiving a leukemia diagnosis, highlighting the importance of resilience and the power of community through chemotherapy, waiting on a bone marrow transplant and recovery. This memoir celebrates small wins and offers guidance to anyone seeking to understand the cancer journey for themselves or a loved one.

Find more products to make life easier: cancerhealth.com/good-stuff

FIGHTING CANCER

Cancer advocacy is vital for raising awareness, supporting patients and promoting policies that improve access to care, funding and research. It also helps address health disparities and gives survivors a voice to inspire change and hope. Take our survey and let Cancer Health know your thoughts on cancer advocacy.

What type(s) of cancer do you have?

How comfortable are you discussing cancerrelated issues with others?

T Very comfortable T Somewhat comfortable

T Not comfortable

Are you aware of organizations that advocate for cancer awareness or support individuals living with cancer?

T Yes T No

How likely are you to donate to cancer-related causes or advocacy groups?

T Very likely T Somewhat likely

T Not likely

How often do you participate in events related to cancer advocacy or awareness?

T Frequently T Occasionally

T Rarely

Have you received any support from advocacy organizations during your cancer journey?

T Yes T No T I don’t know

How important is it for our federal government to fund cancer research?

T Very important T Somewhat important

T Not important

Do you think regular cancer screenings, such as mammograms, Pap tests and colonoscopies, should be covered by public and private health insurance?

T Yes T No

How much impact do you think advocacy has on shaping policies that affect cancer care and research?

T A lot of impact T No impact

T Some impact

What year were you born?

What is your gender?

T Male T Female

T Transgender T Other

What is your current level of education?

T Some high school T High school graduate

T Some college T Bachelor’s degree or higher

What is your annual income?

T Less than $15,000 T $15,000–$34,999

T $35,000–$49,999 T $50,000–$74,999

T $75,000–$99,999 T $100,000 or more

What is your ethnicity? (Check all that apply.)

T American Indian/Alaska Native

T Arab/Middle Eastern T Asian

T Black/African American T Hispanic/Latino

T 1DWLYH+DZDLLDQ3DFLƓF,VODQGHUT White

T Other ___________________________

What is your ZIP code?

Scan this QR code with your smartphone to take this survey at cancerhealth.com/surveys. Or email a photo of your completed survey to website@cancerhealth.com.

THE PROBLEM WITH CANCER RESEARCH THAT FOLLOWS CONVENTIONAL WISDOM IS THAT THERE’S NOTHING CONVENTIONAL ABOUT CANCER.

At the Damon Runyon Cancer Research Foundation, our research focus is singular: High-risk, high-reward. We believe that only by pursuing and investing in the most audacious and ambitious ideas, and the young scientists who have those ideas, will we achieve real and lasting victory over humankind’s deadliest enemy. To learn more, visit damonrunyon.org

Sakiko Suzuki, MD Physician-Scientist

+PƃCOOCVKQP and Cell Death