Cancer Health Spring 2024

A voice for young women with lung cancer

Oncology

8

Leukemia Diary: 24 Years With CLL

Physical Therapy Managing Neuropathy

Biomarker Testing

Sydney Barned, MD

CancerCare® is the leading national organization dedicated to providing free, professional support services including resource navigation, counseling, support groups, educational workshops, publications and financial assistance. All CancerCare services are provided by master’s-prepared oncology social workers and world-leading cancer experts.

For more information call 800-813-HOPE (4673) or visit www.cancercare.org.

E xclusively on Can cer Health.com

Cancer Health Stories

5HDGWKHƓUVW 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 RUDORQJWHUP 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.

16 THE YOUNG AMBASSADOR

Diagnosed with Stage IV lung cancer at age 33, Sydney Barned, MD, raises awareness for the disease. BY

JENNIFER COOK

20 MIND-BODY PATHS TO MANAGING CANCER PAIN

Solid evidence supports integrative care, such as acupuncture, yoga and cryotherapy, to ease cancer pain. BY

2 From the Editor

Just Breathe

4 News

Cancer statistics 2024 | New NCI and SU2C leadership | celebrity diagnoses | prostate cancer news

6 Care & Treatment

Updates on treatments for blood and breast cancers | even brief exercise lowers cancer risk | acupuncture and massage for cancer pain

8 Basics

Neuropathy pain

10 Voices

5LFKDUG:DVVHUVXJLVVWLOOŴRVVLQJŋ and thriving with prostate cancer.

BOB BARNETT

12 A Leukemia Diary

Terry Evans has had CLL since 2000.

26 Can Heal

Meditation helps prepare Kristin Smith Westbrook for life with MBC.

28 Your Team

What is oncology physical therapy?

29 Resources

Information about kidney cancer

30 Solutions

Cultivate a “luckiest” outlook.

32 Good Stuff

Alternative products for comfort

33 Reader Survey

Share your thoughts on treatment.

Sydney Barned, a nonsmoker, has lung cancer.

Just Breathe

YOUNG WOMEN WITH LUNG

cancer made national headlines recently after researchers with the American Cancer Society showed that lung cancer incidence among younger and middle-aged people is now higher among women than men. Not only GRHVWKLVƓQGLQJUHYHUVHKLVWRULFDO WUHQGVEXWLWDOVREDIŴHVVFLHQWLVWV because cigarette smoking—the major risk factor for lung cancer—is not more common among younger women.

Cancer Health

EDITOR-IN-CHIEF

Trent Straube

MANAGING EDITOR

Jennifer Morton

SCIENCE EDITOR

Liz Highleyman

EDITOR-AT-LARGE

Bob Barnett

NEWS WRITERS

Sukanya Charuchandra; Laura Schmidt

COPY CHIEF

Joe Mejía

ART DIRECTOR

Doriot Kim

ART PRODUCTION MANAGER

Michael Halliday

ADVISORY BOARD

Diagnosed with Stage IV lung cancer at age 33, Sydney Barned, MD, is on a mission to get this disease the attenWLRQLWGHVHUYHV$SK\VLFDOO\ƓWQRQsmoker, she shares her story in our VSULQJFRYHUSURƓOHRQSDJH

Regardless of their gender or age, people with cancer often deal with chronic pain. For relief, more folks are turning to nonpharmacological integrative care, such as acupuncture, music therapy, meditation, yoga and cryotherapy. A growing body of evidence supports these therapies as part of oncology treatment. Turn to page 20 for our feature on mindbody paths to managing cancer pain.

A meditation expert living with metastatic breast cancer, Kristin Smith Westbrook recounts her experiences in the memoir The Luckiest Unlucky Person I Know and in our Can Heal Q & A on page 26. For our Solutions column on page 30, she shares ways to cultivate gratitude and good feelLQJVŋDQGZK\GRLQJVRLVEHQHƓFLDO

Oncology physical therapy is another tool to complement treatment. What is

it, and how does it help? Physical and rehabilitation therapist Jeff Eagan spells it out in Your Team on page 28. Support groups can also offer healing. Just ask Terry Evans, who has led VHYHUDOIRUWKH&//6RFLHW\DQRQSURƓW for people with chronic lymphocytic leukemia. Discover more about his CLL journey in this issue’s Diary on page 12. Finally, learn about new treatments for breast and blood cancers, including CLL, in our Care & Treatment section on page 6. And read about 2024 cancer statistics in our News roundup on page 4. Data show that cancer deaths continue to decline. With that, we can end on a note of gratitude.

TRENT STRAUBE

Editor-in-Chief trents@cancerhealth.com

X: @trentonstraube

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.

CHIEF TECHNOLOGY OFFICER

Christian Evans

VICE PRESIDENT, INTEGRATED SALES

Diane Anderson

INTEGRATED ADVERTISING MANAGER

Jonathan Gaskell

INTEGRATED ADVERTISING COORDINATOR

Sarah Pursell

SALES OFFICE

212-938-2051

sales@cancerhealth.com

BULK SUBSCRIPTIONS order.cancerhealth.com or subs@cancerhealth.com

CDM PUBLISHING, LLC

CHIEF EXECUTIVE OFFICER

Jeremy Grayzel

CONTROLLER

Joel Kaplan Cancer Health

Matthew McConaughey Stand Up To Cancer Ambassador

Photo by John Russo Background Photo by Bobby Altman

2 MILLION CANCER CASES IN 2024

An annual report also finds a steady drop in cancer deaths.

“Cancer Mortality Still Declining, but Progress Threatened by Increasing Incidence as Projected New Cancer Cases Top Two Million for 2024.” Thus read a headline from the American Cancer Society (ACS) promoting its “Cancer Statistics, 2024.” Of note, the report found that colorectal cancer is now the leading cause of cancer death in men under 50 and the second in women under 50, following breast cancer.

What’s more, cancer disparities remain a challenge. For example, compared with white people, mortality rates for Black individuals are twofold higher for prostate, stomach and uterine corpus (endometrial) cancers.

“We’re encouraged by the steady drop in cancer mortality as a result of less smoking, earlier detection for some cancers and improved treatment,” said surveillance researcher Rebecca Siegel, MPH, the report’s lead author, in an ACS press statement. “But as a nation, we’ve dropped the ball on cancer prevention, as incidence continues to increase for many common cancers—like breast, prostate and endometrial as well as colorectal and cervical cancers in some young adults.”

$&6KLJKOLJKWHGDGGLWLRQDOƓQGLQJV

• Cervical cancer incidence rates are decreasing VWHHSO\LQZRPHQLQWKHLUVZKRZHUHWKHƓUVW

to receive the HPV vaccine.

• After decades of increase, cancer LQFLGHQFHLQFKLOGUHQKDVƓQDOO\ leveled off, although rates continue to increase among adolescents ages 15 to 19 years.

• Mortality rates continue to increase by 2% per year for uterine corpus cancer, one of the few cancers with increasing mortality. Steeper increases in women of color are widening racial disparities.

• Cancer patients are getting \RXQJHU'XULQJWRWKH proportion of cancer diagnoses in people who are middle-aged (50 to 64 years) increased from 25% in 1995 to 30%, whereas the proportion of cancer diagnoses among people 65 years and older decreased from 61% to 58%, despite both age groups growing in the general population.

7KLVVKLIWUHŴHFWVVWHHSGHFUHDVHVLQWKHLQFLdence of prostate cancer and smoking-related cancers in older adults as well as increased cancer incidence in people born after the 1950s and related to higher obesity rates and other yet unknown factors.

New Leaders at NCI and SU2C

Vanderbilt University Medical Center in Nashville.

W. Kimryn Rathmell, MD, PhD, is the new director of the National Cancer Institute (NCI), which is part of the National Institutes of Health (NIH), the federal agency responsible for medical and public health research. A renowned kidney cancer expert and a leader in cancer research and patient care, Rathmell was selected by President Biden to succeed Monica M. Bertagnolli, MD, who left NCI to become the NIH director. Previously, Rathmell was physician-in-chief at

In related news, Stand Up To &DQFHU68&DQRQSURƓWWKDW raises funds for research and promotes awareness, named Julian Adams, PhD, as its president and CEO. An oncology researcher and executive in the pharmaceutical industry, Adams is expected to strengthen the charity’s focus on cutting-edge cancer research.

W. Kimryn Rathmell, MD, PhD

CELEBRITY DIAGNOSES

)DPRXVIRONVFDQXVHWKHLUVWDU ZDWWDJHWRUDLVHFDQFHUDZDUHQHVV ,QUHFHQWFHOHEULW\QHZV0LFKDHO 6WUDKDQōVWHHQGDXJKWHU,VDEHOOD GLVFXVVHGKHUEUDLQWXPRURQGood Morning AmericaDQGRQDVHULHVRI <RX7XEHYORJV6RIWURFNFURRQHU 0LFKDHO%ROWRQWRRNDEUHDNIURP WRXULQJWRUHFRYHUIURPHPHUJHQF\ EUDLQVXUJHU\WRWUHDWDWXPRU General HospitalVWDU-RKQ-<RUN XQGHUZHQWDVWHPFHOOWUDQVSODQW WRWUHDWEORRGDQGERQHPDUURZ FDQFHUV6LPLODUO\+RXVH0DMRULW\ /HDGHU6WHYH6FDOLVH5Ŋ/DKDGD VWHPFHOOWUDQVSODQWWRWUHDWPXOWLSOH P\HORPD$FWRU.HQ+XGVRQ &DPSEHOOŋNQRZQDV6DQWDLQHome Alone ŋVKDUHGWKDWDIWHUORVLQJKLV LQVXUDQFHGXULQJWKH6$*$)75$ VWULNHKHZDVDEOHWRJHWPRXWK FDQFHUVXUJHU\WKDQNVWR*R)XQG0H$QGBig Bang TheoryDFWUHVV .DWH0LFXFFLSRVWHGWKDWVKHKDG VXUJHU\IRUOXQJFDQFHUDGLDJQRVLV WKDWVXUSULVHGKHUVKHVDLG ŏEHFDXVH,ōYHQHYHU VPRNHGDFLJDUHWWH LQP\OLIHř%XW DOVR,JXHVVLW KDSSHQVDQGWKH JUHDWHVWQHZVLV WKH\FDXJKWLWHDUO\ WKH\JRWLWRXW ,ōPDOOJRRGŐ

Secrets and Grand Slams

Prostate cancer cases make national news and highlight a “broader silence around the disease.”

Top: Lloyd

Austin. Below: Ryne Sandberg

$UHSXEOLFƓJXUHVREOLJDWHGWRVKDUHGHWDLOV DERXWWKHLUSHUVRQDOKHDOWK"(DUOLHUWKLV\HDU 6HFUHWDU\RI'HIHQVH/OR\G$XVWLQKHOGD SUHVVFRQIHUHQFHWRDSRORJL]HIRUEHLQJVHFUHWLYHDERXWKLV SURVWDWHFDQFHUGLDJQRVLVDQGWKHKRVSLWDOL]DWLRQWKDWUHVXOWHG IURPFRPSOLFDWLRQVZKLOHWUHDWLQJWKHGLVHDVH/XFNLO\ŋJLYHQ WKHZDUVLQ8NUDLQHDQGWKH0LGGOH(DVWŋWKHUHZHUHQRJDSV LQWKHFKDLQRIFRPPDQGDWWKH'HIHQVH'HSDUWPHQWDQG $XVWLQVRRQUHWXUQHGWRKLVSRVW

ŏ,GLGQRWKDQGOHWKLVULJKW,VKRXOGKDYHWROGWKHSUHVLGHQW DERXWP\FDQFHUGLDJQRVLV,VKRXOGKDYHDOVRWROGP\WHDP DQGWKH$PHULFDQSXEOLFDQG,WDNHIXOOUHVSRQVLELOLW\Ő$XVWLQ VDLGDGGLQJŏ,ōPKHUHZLWKDFOHDUPHVVDJHWRRWKHUPHQ HVSHFLDOO\ROGHUPHQ*HWVFUHHQHG*HW\RXUUHJXODUFKHFNXSVŐ $VWKH:DVKLQJWRQ3RVWQRWHG$XVWLQōVLQFLGHQWŏVSRWOLJKWV DEURDGHUVLOHQFHDURXQGWKHGLVHDVHŐDQGZDVDŏPLVVHGRSSRUWXQLW\IRUWKH3HQWDJRQFKLHIWROHDGDQGVSUHDGDZDUHQHVVŐ $ERXWRQHLQHLJKWPHQZLOOEHGLDJQRVHGZLWKSURVWDWH FDQFHULQWKHLUOLIHWLPHDQGLWōVWKHVHFRQGOHDGLQJFDXVHRI FDQFHUGHDWKDPRQJ86PHQDIWHUOXQJFDQFHUDFFRUGLQJ WRWKH$PHULFDQ&DQFHU6RFLHW\7KHULVNLVKLJKHUIRU%ODFN PHQDIDFWXQGHUVFRUHGLQ-DQXDU\ZKHQ0DUWLQ/XWKHU.LQJ -UōV\RXQJHVWVRQ'H[WHUGLHGRISURVWDWHFDQFHUDWDJH (DUO\VFUHHQLQJDQGGHWHFWLRQFDQPHDQPRUHWUHDWPHQW RSWLRQVDQGEHWWHURXWFRPHV3XEOLFDZDUHQHVVFDQDOVRƓJKW VWLJPDVRLWōVZHOFRPHQHZVZKHQPHQJRSXEOLFZLWKWKHLU GLDJQRVHVVXFKDV5HSUHVHQWDWLYH*OHQQ7KRPSVRQ5Ŋ3D ZKRVHFDQFHUZDVIRXQGGXULQJWHVWVIROORZLQJD URXWLQHSK\VLFDOH[DP$QG\RXFRXOGVD\%DVHEDOO+DOORI)DPHU5\QH6DQGEHUJIRUPHUO\D &KLFDJR&XEVVHFRQGEDVHPDQKLWDJUDQG VODPZKHQKHVKDUHGQHZVRIKLVPHWDVWDWLF SURVWDWHFDQFHURQ,QVWDJUDPLQFOXGLQJSLFV GXULQJWUHDWPHQW

Clockwise from left: Strahan, Bolton and Micucci

What’s New in Blood Cancer Treatment?

The annual meeting of the American Society of Hematology featured advances in the treatment of blood cancers, with a focus on targeted therapies.

In the Phase III PERSEUS trial, 709 participants with newly diagnosed multiple myeloma were randomly assigned to standard therapy consisting of Velcade (bortezomib), Revlimid (lenalidomide) and dexamethasone or the same regimen plus Darzalex Faspro (daratumumab). After four years, the progressionfree survival rate was 84% with the four-drug combination versus 68% with standard therapy, or a 58% reduction in the risk of disease progression or death. People in the four-drug combo group were also more likely to be negative for minimal residual disease (MRD), meaning they had undetectable malignant cells using highly sensitive tests.

ZLWKVSHFLƓFPXWDWLRQV,QDQDQDO\VLV of 57 previously treated adults and children with acute myeloid leukemia or acute lymphocytic leukemia with a KMT2A gene rearrangement, 63% achieved remission, including 23% with complete remission. Ten of the 13 complete responders assessed for MRD status had no evidence of residual cancer. In many cases, the treatment enabled participants to receive a curative stem cell transplant.

The Phase I/II AUGMENT-101 trial is testing revumenib, an oral menin inhibitor, for acute leukemias

Two studies showed that combining Imbruvica (ibrutinib) and Venclexta (venetoclax)—two drugs that target different pathways involved in blood cancer proliferation—led to better outcomes for people with chronic lymphocytic leukemia or mantle cell lymphoma. “This combination allowed us to attack the cancer cells in two ways, which made LWKDUGHUIRUWKHWXPRUWRƓQGUHVLVWDQFHŐVD\V Michael Wang, MD, of the University of Texas MD Anderson Cancer Center.

Gentler Treatment for Early Breast Cancer

Some people with early breast cancer can skip radiation or removal of armpit lymph nodes without increased risk for recurrence, researchers reported at the San Antonio Breast Cancer Symposium.

In two trials, researchers used Oncotype gene H[SUHVVLRQSURƓOHVWRFODVVLI\EUHDVWFDQFHUSDWLHQWV as having a low or high risk for recurrence after surgery. A study of 171 people with ductal carcinoma in situ (noninvasive malignant cells) found that 95% of those with low risk scores who skipped radiation GLGQRWH[SHULHQFHUHFXUUHQFHRYHUƓYH\HDUV

In the second study, which enrolled people with Stage I breast cancer, all but two of the 186 low-risk patients who omitted radiation had no recurrence. A third study included 1,556 people whose breast cancer had spread to regional lymph nodes, but nodes became negative after presurgery chemotherapy. Five years later, patients randomly

assigned to skip regional node irradiation and those who received radiation were about equally likely to remain free of recurrence (92% versus 93%), and overall survival was the same.

Finally, the SENOMAC trial included more than 2,500 early breast cancer patients with one or two positive sentinel lymph nodes. They underwent surgery, and most also received nodal radiation and hormone therapy. They were randomly assigned to undergo extensive lymph node removal, known as completion axillary lymph node dissection, or not. After four years, recurrence-free survival rates were similar in both groups (89% and 90%), but those who did not undergo lymph node removal were less likely to develop lymphedema.

Even Brief Exercise Lowers Cancer Risk

Brief bouts of vigorous physical activity in the course of daily life—for example, running to catch a bus—can help reduce cancer risk.

An analysis of more than 22,000 non-exercising adults ZKRZRUHƓWQHVVWUDFNHUVIRXQGWKDWWKHPLQLPXPŏGRVHŐ RIYLJRURXVDFWLYLW\QHHGHGWRVHHDQ\EHQHƓWZDV minutes a day. People who engaged in vigorous activity for PLQXWHVDGD\KDGDORZHUFDQFHUULVN$UHODWHG study showed that short periods of moderate to vigorous activity were associated with a reduced risk of cardiovascular events and death.

ŏ7KHLGHDRIDFFUXLQJVKRUWERXWVRIPRGHUDWHWRYLJRURXV activity through daily living activities makes physical activity much more accessible to people who are unwilling or unable to WDNHSDUWLQVWUXFWXUHGH[HUFLVHŐVD\V0DWWKHZ$KPDGL3K' of the University of Sydney.

Tukysa Plus Kadcyla for HER2+ Breast Cancer

Adding Tukysa (tucatinib), a tyrosine kinase inhibitor, to Kadcyla (ado-trastuzumab emtansine), an antibody-drug conjugate, improved progression-free survival (PFS) for patients with advanced HER2-positive breast cancer, includLQJWKRVHZLWKEUDLQPHWDVWDVLVDFFRUGLQJWRVWXG\ƓQGLQJV presented at the San Antonio Breast Cancer Symposium. The Phase III HER2CLIMB-02 trial enrolled 463 people with inoperable locally advanced or metastatic breast cancer. They were randomly assigned to receive Tukysa or a placebo along with Kadcyla. The median PFS time was 9.5 months in the Tukysa group versus 7.4 months in the placebo group— a 24% reduction in the risk of disease progression or death. Among patients with brain metastasis, the median PFS time was 7.8 months versus 5.7 months. Median overall survival was 53 months in the placebo group and not yet reached in the Tukysa group. Sara Hurvitz, MD, of Fred Hutchinson Cancer Center, suggested that monitoring for brain metastasis may EHZDUUDQWHGWRLGHQWLI\SDWLHQWVZKRPLJKWEHQHƓWIURP this treatment.

For more care and treatment news: cancerhealth.com/science-news

ACUPUNCTURE AND MASSAGE FOR PAIN

Both acupuncture and massage therapy show promise as nonpharmacologic pain relief options for people with advanced cancer. The Integrative Medicine for Pain in Patients with Advanced Cancer Trial (IMPACT) enrolled 298 adults with cancer who experienced moderate to severe pain. They were randomly assigned to weekly 30-minute acupuncture or massage therapy sessions for 10 weeks with monthly “booster” sessions through 26 weeks.

At that point, worst pain scores fell by 2.53 points in the acupuncture group and 3.01 points in the massage group on a scale of 0 to 10. What’s more, 28% and 36% of patients in the respective groups were able to reduce their use of opioid pain relievers. Participants in both groups reported improvements in fatigue, insomnia and quality of life. Andrew Epstein, MD, of Memorial Sloan Kettering Cancer Center, and colleagues cautioned that acupuncture and massage don’t replace pain drugs, but they can improve symptoms while potentially reducing medication use. They added that Medicare coverage of acupuncture and massage “is needed to promote equitable and effective pain management for patients with cancer.”

Neuropathy Pain

Painful neuropathy is common among cancer patients, but it can be managed.

PAIN IS A COMMON SYMPTOM of cancer and a frequent treatment side effect. In many cases, pain is acute, or temporary, but some people experience chronic pain that can continue even after treatment is completed. Pain can negatively affect quality of life, so pain management is an important part of any cancer treatment plan. (See “Mind-Body Paths to Managing Cancer Pain,” page 20.)

Pain may be caused by cancer itself, or it may stem from surgery, radiation or medications. Some chemotherapy drugs can cause peripheral neuropathy, or damage to nerves that communicate with the brain and spinal cord. These include taxanes (such as paclitaxel), vinca alkaloids (such as vincristine) and platinumbased drugs (such as cisplatin). It can take months or years for neuropathy pain to improve after stopping treatment, and in some cases, nerve damage may be permanent.

Chemotherapy-induced peripheral neuropathy (CIPN) can lead to symptoms such as pain, burning, tingling (“pins and needles”), weakness or numbness in the hands or feet. Some people experience impaired strength, coordination and balance. People with sensory neuropathy may have reduced sensitivity to hot and cold temperatures. In some cases,

pain can interfere with walking, holding objects and other activities of daily living. Unrelenting pain may also affect mood, leading to depression, anxiety or anger.

With few proven prevention strategies and limited treatment RSWLRQV&,31FDQEHGLIƓFXOWWR manage. In some cases, chemotherapy doses can be reduced or spaced further apart, or a drug may be stopped altogether to prevent further nerve damage, but this could compromise treatment effectiveness.

For some people, over-thecounter pain relievers may be VXIƓFLHQWZKLOHRWKHUVQHHG stronger medications prescribed by a doctor. Certain antidepressants and antiseizure medications (such as gabapentin and pregabalin) may help improve neuropathy pain. The antidepressant duloxetine (Cymbalta) is the only drug with adequate supportive evidence, according to the American Society of Clinical Oncology. Topical treatments such as lidocaine or capsaicin, derived from chili peppers, may also be an option. Opioids are generally not recommended for neuropathy pain, but they may be used in severe cases.

Other approaches include application of heat or cold, electrical stimulation, acupuncWXUHDFXSUHVVXUHUHŴH[RORJ\

and massage. Medical cannabis may also relieve neuropathy pain (see page 24).

Physical or occupational therapy and appropriate exercise can help improve strength and balance. Practical measures— such as wearing supportive shoes, installing handrails, removing loose rugs and using a cane— can prevent falls and injuries. Psychological counseling, meditation and relaxation techniques can help people cope with pain. It often takes time and trial and error to get pain under control.

Before starting cancer treatment, ask your care team what kinds of adverse effects you can expect. But remember, drugs affect people differently, and not everyone experiences the same side effects. It may be helpful to keep a pain diary, noting what the pain feels like (for example, burning or throbbing), how severe it is, when it occurs, how long it lasts and what brings relief. Tell your doctor or nurse as soon as you start to experience neuropathy pain—adjusting your treatment promptly may prevent permanent nerve damage. Q

•

Still Flossing

When your cancer is incurable, how do you respond to folks constantly asking, “How are you?” Richard Wassersug, PhD, who has lived with prostate cancer for over 25 years, crafted an apt answer— and a call to action.

THERE ARE A MULTITUDE OF folks diagnosed and treated for incurable diseases who write about how the experience sensitized them to their inevitable death yet increased their appreciation for life.

This isn’t one of those essays.

,WLVPRUHVSHFLƓF

I was diagnosed with prostate cancer some 25 years ago, and within three years, I failed a couple of potentially curative treatments. Since then, I’ve been on drugs that, although not curative, have held my cancer at bay.

When I was diagnosed, I was a research scientist in my early 50s studying lots of things, but none had anything to do with health. Over the years, though, my research has increasingly shifted toward the psychological impact of cancer and its treatments. I am fascinated by how folks adapt to living when they not only know that they won’t live forever but are also well informed about how they are most likely to die.

I’ve learned that the simple words we use in everyday conversation can reveal to others as well as ourselves the limitations that we see on our lives—and how we subsequently elect to live.

7KHƓUVWWKLQJ,ZURWHDERXW

this was an essay published back in 2000. The essay was built upon the challenge I was KDYLQJDIWHUƓQG ing out that my cancer was incurable, in responding to the common salutation “How are you?” Just saying, “Fine, thank you” was uninformative and, frankly, dishonest. Alternatively, to say, “Well, I’m a bit down right now, having found out that my cancer’s not curable” wasn’t going to improve the day for the person asking nor, for that matter, make my own day any more manageable.

So I came up with the following cornball answer:

ŏ:HOOř,ōPVWLOOŴRVVLQJŐVDLG with a big toothy smile.

That wording conveyed the message that I was taking care of myself and not expecting to die immediately, nor even in the near future. It also implied a commitment to life without being oblivious to my inescapable death. It didn’t deny the inevitable, but my response was TXLUN\HQRXJKWRGHŴHFWWKH conversation away from diagnostic details.

I thought there was enough insight there for an essay, so I drafted it up, titled it “Still Flossing” and submitted it to a national newspaper, which bought it but retitled it “Flossing for the Future.”

That essay affected my life LQWZRVXUSULVLQJZD\V,WLQŴXenced my own health, and it was the beginning of my research into the deeper meaning RIWKHVHHPLQJO\VXSHUƓFLDO language commonly used in the world of cancer.

7KHƓUVWVXUSULVHLVDERXWKRZ my own words affected me. The other is a more academic exploration of what others say when dealing with progressive and incurable diseases. For that research, I examine both the explicit and implicit messages in the common words we use when trying to stay conversational

and in control while knowing that a fully informative discourse about our health could devolve into a dirge.

I liked my own one-liner enough that it has been my standard answer to the “How are you?” question for over 20 years. From the get-go, though, I realized that I’d be a hypocrite if I GLGQōWŴRVV\HWSURFODLPHGWR RWKHUVWKDW,ZDVŏVWLOOŴRVVLQJŐ

6R,ŴRVVHG

Only recently did I realize that I have had remarkably good oral health and have needed very little dental work over these 20-plus years. Surely, ŴRVVLQJKHOSHGDQGSURFODLPLQJ WKDW,ZDVŴRVVLQJWUDSSHGPH

LQWRŴRVVLQJ

In retrospect, the editor who retitled my essay 23 years ago nailed it by publishing that I ŴRVVHGŏIRUWKHIXWXUHŐ$QGP\ saying the statement out loud almost daily moved it from a quip to a mantra to a creed that gave me a healthy future.

,QRZVHHWKDWŏŴRVVLQJIRUWKH

Richard Wassersug, PhD

Read more from survivors at: cancerhealth.com/stories

future” was emblematic of what has been a general commitment to my health. I knew, for example, that men who are diagnosed with prostate cancer more often die of cardiovascular disease than prostate cancer. I also knew that physical exercise reduces that risk. So over these same two decades, I have been more committed to getting exercise than I had at any earlier time in my life.

Flossing, of course, reduces the risk of gum disease. Coincidentally, gum disease has been linked to a greater risk of heart disease.

Thus, announcing that I’m still ŴRVVLQJŋZKLFKEHJDQDVDZD\ WRGHDOZLWKDGLIƓFXOWTXHVWLRQ DWDGLIƓFXOWWLPHŋEHFDPHD directive to myself. It was a prescient prophecy from an editor who had a better vision of my future than I had when I submitted my essay to his newspaper.

There is, though, an irony in all WKDW$VQRWHGDERYHPRVWPHQ diagnosed with prostate cancer don’t die of it. Rather, they are more likely to die of other causes, with cardiovascular disease at the top of the list. If I hold to my commitment to maintain good oral and cardiovascular health, I am likely to live longer. The

longer I live, though, the more likely my prostate cancer, which is currently controlled but not FXUHGZLOOUHHPHUJHŋZLWKLQcreasing odds that I will indeed die of that disease.

Right now, there are no signs that this is likely to occur in the near future. In the meantime, the commitment to life that started with a corny one-liner at the turn of the century has helped me remain healthy ever since.

I now encourage others dealing with progressive diseases to say, ŏ:HOO,ōPVWLOOŴRVVLQJōŐZKHQ responding to the simple question “How are you?” or, for that matter, other challenging questions about their health.

Try it out and see if I’m right. I suspect not only that you’ll get a smile back from others but also that it may kick-start a commitment for you, as it did for me, to a healthy life. Q

Richard Wassersug, PhD, is an honorary professor in the Department of Cellular and Physiological Science at the University of British Columbia in Vancouver. He is the lead author of the book $QGURJHQ'HSULYDWLRQ7KHUDS\ $Q(VVHQWLDO*XLGHIRU3URVWDWH Cancer Patients and Their Loved Ones

A Leukemia Diary

Terry Evans, 76, a father of four, lives with his wife in Huntington, California. He has had chronic lymphocytic leukemia since 2000.

April–June 2000

My job as IT manager for Long Beach, California, allowed me a physical every year. My doctor asked me if I had been sick, because my white blood cell count had gone up the last three years. It was still in the normal range, but he sent me to a hematologist. The hematologist ran blood tests and, in a follow-up in June, told me I had chronic lymphocytic leukemia (CLL) [a cancer that affects white blood FHOOV@,ZDVVKRFNHG,IHOWƓQH+HWHOOVPH,KDYH cancer, and it’s incurable, but we’re not going to do anything about it right now. I was confused. I went home and told my wife, then my four kids. The youngest was 18. The internet told me I have DƓYHWR\HDUOLIHVSDQ,ZDV

July 2000–April 2007

For seven years, I almost ignored it. I retired in DIWHU\HDUVDWP\MRESDUWO\EHFDXVH

I wasn’t sure if my disease would progress. My white cell count was going up, but slowly. I had no symptoms. My wife wanted me to see a CLL specialist, but I kind of ignored the disease.

May–September 2007

I felt fatigued, was losing weight. We were helping our daughter move out of her house in Florida and back to California, and I was stressed. There’s a link between stress and disease progression.

My white blood count doubled and then doubled again. By September, it was 600,000—normal is below 11,000. My hematologist said it was time to treat. He gave me a monoclonal antibody and then a combination of an antimetabolite and a chemotherapy drug.

[I was pretty sure I had] developed autoimmune hemolytic anemia (AIHA). Your body attacks your

red blood cells, so your hemoglobin drops. I was so tired I couldn’t stand up in the shower. But my hematologist refused to acknowledge what I had. My wife, who is a nurse, said, “This is ridiculous.”

November 2007–May 2008

My wife contacted a CLL specialist in England, ZKRUHVSRQGHGWKDWWKHUHZDVDFKDQFH, had AIHA so I made an appointment with a CLL specialist in San Diego. He saw us quickly, conƓUPHGWKHGLDJQRVLVDQGWROGPHP\KHPRJORELQ was so low that I would probably have gone into cardiac arrest within 48 hours. I was admitted to the UC San Diego Medical Center and transfused. It was my 60th birthday. They started treating me with high-dose steroids. That got the autoimmune condition under control, but then it came back.

June 2008–April 2010

It was determined that the CLL was causing the AIHA, so they started treating me with the monoclonal antibody along with the high-dose steroid, which drives the cancer cells out of lymph nodes and into the bloodstream, where they can be killed. You feel great, like you could run a marathon, but two days later, you don’t want to be near me. It puts you into a real funk. I started to realize how foolish I had been by not seeing a specialist earlier.

Around this time, I saw a post on an internet forum about a CLL support group meeting in Newport Beach, 10 miles from my home. I had never met anyone with CLL. There were seven or eight people, including the leader, Brian Koffman, a family doctor with CLL. He went on to found the QRQSURƓW&//6RFLHW\,ōYHEHHQLQYROYHGHYHUVLQFH Treatment brought down my numbers. I thought

Terry Evans is active in the CLL Society.

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.

• 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 may cause serious side effects, including:

• Serious infections can happen during treatment 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) can happen during treatment 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 (atrial fibrillation and atrial flutter) have happened in people treated with CALQUENCE. 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.

The most common side effects of CALQUENCE include headache, diarrhea, muscle and joint pain, upper respiratory tract infection, and bruising.

These are not all 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.

Please see full Prescribing Information, including Patient Information.

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.

For more information, go to www.CALQUENCE.com or call 1-800-236-9933.

Distributed by: AstraZeneca Pharmaceuticals LP, Wilmington, DE 19850 CALQUENCE is a registered trademark of the AstraZeneca group of companies.

©AstraZeneca 2023. All rights reserved. US-83082 11/23

we had a winner. I had a 13-month remission. Then we had to repeat the treatPHQW7KLVWLPHDƓYH month remission. Time to try something new.

May 2010–September

2012

I opted for a clinical trial that included a BCL-2 inhibitor >ZKLFKEORFNVDSURWHLQWKDWSUHYHQWVFDQFHUFHOOV from dying]. I was on the trial for nine months, and my numbers looked good for another 18 months. Our CLL group grew to 35 or 40 people. It’s UXQE\SDWLHQWVDQGFDUHJLYHUVQRWGRFWRUVZKLFK lets people speak freely. It was the greatest thing in the world to be able to share and get information directly from patients. When Brian asked me to lead the group, I said yes. We started meetings in RWKHUFLWLHV:HōGŴ\SHRSOHLQIURP1HZ<RUNRU Orlando or Houston, and I’d train them in our model. I still manage all these groups—there are now 45—and lead the Orange County [California] one. Since COVID, our monthly meetings are all on Zoom.

October 2012

I was beginning to relapse quickly, so I entered another clinical trial, which compared two drugs: DFRYDOHQW%7.LQKLELWRU>ZKLFKEORFNVDSURWHLQ called Bruton tyrosine kinase that can promote cancer growth] and a monoclonal antibody. I got the latter. My CLL numbers went back to normal, but in two months, after stopping the monoclonal antibody, they started to climb again.

August 2013

7KHUHZDVQRFURVVRYHUVR,FRXOGQōWWDNHWKH%7. inhibitor, which had an amazing 85% response rate. The CLL community thought this was unethical— WKDWE\QRWDOORZLQJFURVVRYHUWKH\ZHUHDOORZLQJ patients to die—and petitioned the FDA [Food and Drug Administration] to change the rules. That happened, but it took months.

I was out of options. On a Tuesday, my doctors told me to come in on Friday for stop-gap treatPHQWV%XWRQ7KXUVGD\WKH)'$DSSURYHGWKH

)RUPRUHƓUVWSHUVRQHVVD\VJRWR cancerhealth.com/stories

FURVVRYHU,I,KDGVWDUWHG the [stop-gap] treatment, I SUREDEO\ZRXOGKDYHEHHQ kicked out of the trial.

October 2013–2017

,VWDUWHGWKH%7.LQKLELWRU and immediately saw a reduction of my spleen and lymph node swelling. Two years later, my white blood cell numbers were normal.

2018

My CLL numbers started rising, so I entered another clinical trial, testing a combination of a BCL2 inhibitor DORQJZLWKWKH%7.LQKLELWRU,KDGWRSD\ a year for a co-pay, but it seemed to be a winner. Within 16 months, I had “unmeasurable minimal UHVLGXDOGLVHDVHŐŋWKH\FRXOGQōWƓQGDQ\&//

2021–2022

After 29 months, we stopped one of these drugs. We thought the remission was deep, but [the deciVLRQWRVWRS@ZDVSDUWO\ƓQDQFLDO7KH&//FDPH back, so we tried the other drug by itself. That didn’t work. We went back to the combination, which kept it under control, but my CLL numbers were rising.

In August 2021, I was diagnosed with prostate cancer. People with CLL often get a secondary cancer because our immune system is screwed XS,ōPRQDFWLYHVXUYHLOODQFHEXWLWōVWUHDWDEOH

January 2023–Present

Because I get frequent blood tests, we saw signs of relapse in January of 2023. I was refractory >UHVLVWDQW@WRERWKWKH%7.LQKLELWRUDQGWKH%&/ LQKLELWRUEXW,KHDUGDERXWDQRQFRYDOHQW%7. inhibitor, which works by a different mechanism. I started this new drug in June, and it appears to EHZRUNLQJ,KDYHYHU\IHZLIDQ\VLGHHIIHFWV I don’t expect a cure. Nor do I expect this to be my last treatment. I hope it will last a long time. I SUHWW\PXFKMXVWOLYHP\OLIHHYHQZKHQUHODSVLQJ :HōYHEHHQWR+DZDLLIRXUWLPHV7KLV\HDUZHōOOJR WR,UHODQG6HYHUDOWLPHVD\HDUZHYLVLWRXUIRXU wonderful children and 12 grandchildren. I play golf RQFHRUWZLFHDZHHN,ōPOLYLQJDSUHWW\JRRGOLIH

Terry and his wife play golf in Utah.

Sydney Barned started targeted treatment for lung cancer while completing her residency.

Diagnosed with Stage IV lung cancer at age 33, Sydney Barned, MD, is on a mission to get this disease the attention it deserves, including among young women.

BY JENNIFER COOK • PHOTOGRAPHY BY MATTHEW RAKOLA

WHEN YOU PICTURE SOMEONE WITH STAGE IV lung cancer, what comes to mind? For most people, it’s likely to be a frail-looking older man or woman with thinning hair tethered to an oxygen tank and moving slowly. Not a vibrant younger woman, like 40-year-old Jamaican-American Sydney Barned, MD, who has abundant long hair and energy to spare. She was diagnosed with Stage IV non-small-cell lung cancer (NSCLC) in 2017 at age 33. And she is all for busting stereotypes about lung cancer and who gets it.

Barned had a full plate in February 2016—a medical residency on the horizon, work, a serious boyfriend and regular 5K runs—when she rst felt the left side of her chest “wasn’t really working properly. It just felt very tight,” she says. Accustomed to years of ballet, dancing and running almost daily, she realized that her exercise tolerance had slipped. At the time, she was in Jamaica, where she had attended medical school and was working in a hospital emergency department while awaiting acceptance into a medical residency program. An X-ray showed that the bottom half of her left lung was “ lled with gunk.” She was diagnosed with walking pneumonia and prescribed antibiotics.

A chronic cough followed the tightness, so in April, Barned had another X-ray. Still present, the abnormality was less opaque, and the pulmonologist appeared unconcerned. He prescribed a steroid and recommended a follow-up X-ray in a month. Life intervened with her acceptance into a Washington, DC, residency program and a move to the United States. But over the summer, Barned, who has a strong family history of asthma, started wheezing and saw another pulmonologist. Testing late in the year ruled out asthma, and she had a third X-ray, the results of which were ominous.

“ is eagle-eyed radiologist saw a small left lower lobe consolidation, which is what I had the year before,” Barned says. “And I immediately started crying because if I still have this abnormality, it means there is something in my lung.” A CT scan con rmed that a mass was compressing the airways in her left lung, causing the wheezing. e pulmonologist moved quickly to schedule a bronchoscopy,

which revealed that the tissue was friable.

“Friable in medical jargon is cancer,” Barned says. “Always, invariably cancer.” And on February 7, 2017, the pathology results con rmed that she had NSCLC.

HEARTBREAK AND HOPE

Barned was referred to a tertiary care center, where she would get specialized treatment. Soon, another bronchoscopy found a positive lymph node, pushing the diagnosis to “at least Stage III.” Barned’s doctors also arranged for a video-assisted thoracoscopy to get a better look inside her lung and take additional biopsies.

“I went to the oncologist thinking I was Stage III, that I would do chemo to shrink the mass and then get a lobectomy,” Barned says. But in that meeting, also attended by her Jamaican boyfriend, David, and surgeon father, she learned that she already had Stage IV cancer.

Unbeknownst to Barned, her doctors had sent out her biopsy sample for biomarker testing, which identi ed a mutation in the ALK gene, one of the biomarkers examined in NSCLC. Fortunately, targeted medications are available for that mutation, and Barned would have to be on one of them for the rest of her life, her oncologist explained. She added that the treatment was palliative, not a cure, and teratogenic, meaning it could cause birth defects, so she wouldn’t be able to have children.

Barned was devastated. She and her dad both cried— “the rst time I ever saw my dad cry in my entire life”— while David sat in shock.

“To hear, ‘Oh, it’s Stage IV,’ which means it’s terminal, which means that my life expectancy is just—what is my life expectancy?” Barned says. “I have my person I want to spend the rest of my life with. We’ve already spoken about marriage and kids, and now everything is coming to a screeching halt.

AS A YOUNG PERSON, I DIDN’T GET MY CAREER SET UP.

“On top of that, I had just started residency. And now cancer? How am I going to do all of this? And the other thing: If you stop working, you don’t have insurance.

And if you don’t have insurance, you can’t do treatments.”

After the onslaught of di cult news, Barned and David decided not to wait, and her sister and residency friends threw together a wedding for them two weeks later—“sweet and small, like pandemic-sized before the pandemic.”

FINDING A STAGE IV FUTURE

e targeted treatment Barned’s oncologist wanted to start her on had not yet been designated as a rst-line treatment, and Barned’s insurance refused to pay for it. at meant starting on an older ALK inhibitor—one pill twice a day. Barned’s rst dose caused “horrible, horrible, horrible” diarrhea. But this common side e ect wore o , and Barned was able to complete her residency, even achieving the accolade of chief resident.

Barned was on the rst med for ve years—several years longer than most patients, she says—before the cancer spread to her brain in 2022. She switched to the treatment originally suggested, by then a rst-line option, which she remains on today.

roughout it all, David has been her rock, making sure Barned takes her meds and accompanying her to every appointment, including sitting in the car and FaceTimeing when the pandemic prevented him from joining her indoors. “When my fatigue was ridiculous, he researched and made di erent juices to give me pick-me-ups,” Barned says. “He cooked di erent meals. He put turmeric in everything because he read that turmeric has anticancer properties—I’ve gotten used to everything being yellow.”

But the years since have not been easy. e calculus of cancer is di erent for a thirtysomething than it is for a sixtysomething. “As a young person, I didn’t really get my whole career set up. I didn’t have private insurance or disability insurance,” she says. “And now I am ineligible. So if something were to happen to me now, how would I be able to pay for my living expenses?”

And then there’s the general life stu . “It makes planning for the future fuzzy. I struggled with ‘Do I buy a house, knowing that I de nitely won’t be around for 30 years to pay o the mortgage?’” At 33, she wouldn’t let herself think about reaching 40 because it was seven years away. So when she turned 40 last fall, she celebrated with a trip to Bali with friends “because this was a milestone I didn’t think I was gonna reach.”

As for her career, Barned loved cardiology going into residency, but “afterward, it was like, It doesn’t make sense for me to do any sort of specialty because that is going to

be at minimum three additional years, much less to be in a program that’s going to require 80-hour weeks,” Barned says. Instead, she settled on being a generalist and now works as a hospitalist at Anne Arundel Medical Center in Annapolis, Maryland, caring for hospitalized patients.

“Not enough thought [is given to] young cancer patients, what recourse they have,” she adds, noting that older patients have lots of resources, including Medicare, because cancer is traditionally a disease of the old.

A WIN ON BIOMARKER TESTING

Precision medicine is critical to improving cancer outcomes, according to the American Cancer Society Cancer Advocacy Network (ASC CAN). One way they can be improved is by expanding biomarker testing, which is what allowed Sydney Barned, MD, to get the targeted treatment that has extended her life. ASC CAN is working state by state to help pass legislation that expands coverage of and DFFHVVWRELRPDUNHUWHVWLQJ%DUQHGWHVWLƓHG before the Maryland legislature about the positive impact the testing had on her life, helping to get a bill passed and signed into law by Governor Wes Moore in 2023. “That’s one of my proudest moments in advocacy,” she says. In total, 14 states have now passed such laws, and in 2023, legislation was introduced in eight more.

ADVOCATING FOR LUNG CANCER KNOWLEDGE

Barned is active in the GO2 Foundation for Lung Cancer and the Lung Cancer Research Foundation, among other advocacy organizations. And she has been busy promoting the GO2 Lung Cancer Voices Summit in Washington, DC, held March 3 to 5, where lung cancer advocates share their stories with their congressional representatives, who make federal funding decisions.

She also advocates for more widespread knowledge about lung cancer. For example, most people who hear that she has cancer assume it’s breast cancer because of her age. She is quick to point out that lung cancer kills more women than breast cancer and nearly as many people as breast, colon and prostate cancer combined. Yet annual lung cancer research funding through the Department of Defense Congressionally Directed Medical Research Programs is a mere $25 million, while breast cancer receives $150 million, prostate cancer receives $110 million and ovarian cancer, which is far rarer, receives $45 million. Lung cancer needs to “catch up with the other cancers that are more well-known but kill less people,” she says.

Part of the problem, Barned notes, is that lung cancer has had such a deadly prognosis that there haven’t been enough survivors to tell their stories. In addition, the stigma of smoking and its link to lung cancer have made family members of those who died reluctant to take up the cause. Lack of education has led to the underutilization of available

therapies, and only 6% of people eligible for lung cancer screening with annual lowdose CT scans are getting them. Plus, screening is limited to smokers and former smokers “even though this is a disease that can a ect anyone,” she says.

Among newly diagnosed lung cancer patients, roughly 20%, like Barned, have never smoked, and that proportion is growing. “Alarmingly, lung cancer is being diagnosed in young women a lot more than in young men and in a lot of young women who never smoked,” she says. And many people with Barned’s mutation are former runners, like her. at raises a question about what environmental factors might be linked with this cancer.

A REPRESENTATIVE FOR OTHERS

Other reasons compel Barned to do advocacy work. Her aunt, another nonsmoker, was diagnosed with lung cancer three years after Barned was and died in July 2023. What’s more, “I realize that I had privileges that someone who looks like me would probably not have had,” she says. Among these advantages are having highly trained, caring doctors who listen to her, being treated at a top medical institution and, as a medical doctor, being health literate.

“As much as I am not technically African American, I am Black, and I can be a good representative for them,” she says. Currently, she is learning more about the history of health disparities “so that I can be a better advocate and everyone can have the opportunities that I did.”

Barned particularly wants younger people to know that cancer “can happen to anyone, and they shouldn’t let a doctor discount them because of their age.” She encourages them to speak up for themselves, especially if a doctor discounts their symptoms. “What you should say is, ‘If another patient presented with these symptoms, what would your di erential diagnosis be? And how have you ruled it out in me?’ And if the only quanti er is age, you can say ‘Take age out of it.’ Because age doesn’t discriminate.” Q

MIND-BODY PATHS TO MANAGING CANCER PAIN

Solid evidence supports integrative care, such as acupuncture, yoga and cryotherapy, to ease chronic pain for cancer survivors.

BY BOB BARNETT

CANCER OFTEN ANNOUNCES ITS PRESENCE WITH PAIN.

ERIC TANDBERG,

59, who lives near Seattle, had eight compression fractures when his smoldering multiple myeloma became active in 2010. “A fentanyl patch was the only thing that could address the pain,” he remembers. But in 2020, after the cancer returned, the treatment left him with chemotherapy-induced peripheral neuropathy (CIPN), a type of nerve damage (see Basics: Neuropathy Pain, page 8). “My feet had a little tingling but later started to hurt real bad,” he says. “Even soft slippers were painful.” Tandberg took medication to help with the pain, but he also tried acupuncture twice a week for three weeks and then weekly as maintenance. “Over six weeks, my pain went away, though I still have some numbness and tingling,” he says. “My wife and I can now take two-and-a-half-mile walks.”

“For neuropathy, pharmacological approaches have shown limited success to date,” says Yale School of Medicine oncologist Maryam Lustberg, MD, MPH, president of the Multinational Association of Supportive Care in Cancer. “Integrative modalities, such as acupuncture and massage, are very much needed.”

Nearly a third of all cancer patients experience CIPN that lasts at least six months after treatment ends. Most breast cancer patients receive aromatase inhibitors to protect against recurrence, and about half of them experience joint pain a year later and beyond. Even immunotherapy, which can replace more toxic chemotherapy, can lead to arthritis-like pain.

“ ere is evidence, now for decades, that non-pharmacological approaches to cancer pain are helpful, and now we have multiple guidelines,” says Lorenzo Cohen, PhD, director of the Integrative

Common non-pharmacological approaches to soothe cancer pain include, clockwise from top left: acupuncture, exercise, music therapy and acupressure.

Medicine Program at the MD Anderson Cancer Center in Houston. Even if these therapies don’t work on their own, he says, painkiller dosages may still be reduced—“the true concept of integrative care.” Cohen practices what he preaches: About ve years ago, when he had lymph nodes surgically removed to treat melanoma, he scheduled acupuncture for the next day and ramped up his yoga practice.

In 2022, the Society for Integrative Oncology (SIO) and the American Society for Clinical Oncology (ASCO) collaborated on the guide “Integrative Medicine for Pain Management in Oncology.” (Education modules are available at IntegrativeOnc.org.) It concluded that the following therapies are evidence-based when used for these indications:

• Aromatase inhibitor–related joint pain: acupuncture, yoga

• General cancer pain or musculoskeletal pain: acupuncture, acupressure, re exology, massage, Hatha yoga, guided imagery

• CIPN: acupuncture, re exology, acupressure

• Procedural or surgical pain: acupuncture, hypnosis, music therapy

• Pain during palliative care: massage.

ACUPUNCTURE & CRYOTHERAPY

“ ere is robust evidence of acupuncture for chronic noncancer pain and, in the last 15 years, for cancer survivorship,” says Jun Mao, MD, chief of the Integrative Medicine Service at Memorial Sloan Kettering Cancer Center in New York City and lead author of the SIO/ASCO guide. By stimulating the brain to release neurotransmitters, including endorphins and dopamine, acupuncture can provide immediate pain relief, he explains. But by sending signals to the limbic system, which is involved in cognition, it can help rewire the brain. “Chronic pain can be a learned phenomenon,” he says. “Acupuncture helps you unlearn pain.” is therapy works for about 60% to 70% of people who try it. Often, six to 12 sessions are required, but acupuncture can have long-lasting e ects. A related therapy, acupressure, involves applying pressure to speci c points on the body.

With little risk of side e ects, acupuncture can be safely combined with other approaches. To prevent CIPN, cryotherapy “is starting to be standard of care at di erent institutions,” says Heather Greenlee, PhD, MPH, founder and medical director of the Integrative Oncology Program at Fred Hutchinson Cancer Center in Seattle. Cryotherapy involves cooling the hands and feet during chemotherapy infusions to restrict small blood vessels so that toxic agents

don’t reach peripheral nerves. It can be as simple as holding an ice bag during infusions, but special cooling gloves and socks are available (See Good Stu , page 32). Greenlee is studying cryotherapy plus acupuncture for colorectal cancer patients.

EXERCISE

Physical activity during and after treatment has many bene ts, including managing pain. “Being more active during treatment reduces the risk of neurotoxicity and helps with a host of other symptoms,” says Lustberg.

Scott Capozza, PT, a physical therapist at Smilow Cancer Center who is board-certi ed in oncology, was a competitive runner when he was diagnosed with testicular cancer 25 years ago at age 22. He ran the Boston Marathon within the year. Today, he helps cancer patients manage all kinds of pain and often starts with belly breathing exercises. “I can get someone from an 8 to a 4 [on a 10-point pain scale] just by focusing on breathing,” he says. en he’ll move to gentle exercises—including cardiovascular and strength training—tailoring them to the patient’s needs and treatment schedule. For people with joint pain, he’ll teach a new wake-up routine, including stretching ankles, feet, knees and hips in bed. “It takes two minutes to ‘lubricate’ your joints to decrease pain with mobility,” he says. For CIPN, he’ll focus on balance and toescrunching exercises to increase circulation in the tiny muscles of the toes. “If you can’t feel your feet, you’re at an increased risk of falls,” he cautions.

If your cancer center doesn’t o er specialists, your regular therapist can easily access shared knowledge on listservs, such as one run by the American Physical erapy Association’s Academy of Oncologic Physical erapy.

MASSAGE

According to Memorial Sloan Kettering Cancer Center, massage can help reduce short-term pain after surgery, chemotherapy or radiation. Massage can also help lower anxiety and depression, improve sleep and help you cope with your situation. Your cancer center may have a list of massage therapists who have experience with cancer patients. For self-care, Greenlee recommends Me Time Acupressure, an app developed at the University of Michigan and tested for cancer patients; it’s free on Apple and Google.

MUSIC THERAPY

If your nurse puts on “ e Blue Danube” waltz before a procedure to help you relax and reduce postoperative pain,

that’s music medicine. Listening to enjoyable music can stimulate pain-relieving brain neurochemicals, says Drexel University music therapy professor Joke Bradt, PhD.

Music therapy goes beyond listening to prerecorded music. Whether used in a oneon-one session or in a group with a boardcerti ed music therapist, music can address factors that exacerbate your pain, such as stress, anxiety, depression and loneliness.

“People with cancer may be invited to engage in active music-making, such as singing with the therapist or playing instruments, to explore stressors and express feelings,” says Bradt. “ ey also learn music-based strategies for self-management of symptoms at home.” In her 2023 study working with people with advanced cancer, six sessions of music therapy helped people feel more in control of their pain, which in turn reduced pain intensity and the degree to which pain interfered with normal activities.

Massage can help relieve cancer pain.

Most of the National Cancer Institute–designated cancer centers o er music therapy, but if yours doesn’t, ask for a referral or search on the American Music erapy website (Music erapy.org). If you can’t access or a ord therapy, you can still use music. “Pay attention to how music makes you feel so you can use it to manage pain,” says Bradt. “Create an inventory so you can call on music when you need it.”

MINDFULNESS MEDITATION

Linda E. Carlson, PhD, a professor of psychosocial oncology at the University of Calgary in Canada, was already practicing Buddhist meditation in graduate school when she learned about Mindfulness-Based Stress Reduction (MBSR), an evidence-based program that improves depression, anxiety and chronic pain. In 1998, she and colleagues adapted the approach for their cancer patients at the Tom Baker Cancer Centre at the University of Calgary, creating Mindfulness-Based Cancer Recovery (MBCR). Relaxation is part of mindfulness training through MBCR, but so is breaking down fear of pain.

“Resistance to pain magni es the su ering,” says Carlson. You may fear that you won’t be able to tolerate the pain, which can actually intensify pain. By paying attention, you may realize that pain shifts, changes, comes and goes. “In a lot of studies, when we ask people with cancer how mindfulness meditation a ects their pain, they say, ‘Well, I still have the pain, but it doesn’t interfere with my life as much.’”

Many cancer centers o er mindfulness meditation; some o er MBCR. One guide is Carlson’s home-study book, Mindfulness-Based Cancer Recovery: A Step-by-Step MBSR Approach to Help You Cope with Treatment and Reclaim Your Life (MindfulCancerRecovery.com). She also recommends the app Insight Timer, which is available for free and has a range of guided meditations. “Yoga and tai chi help with physiological and mental relaxation too, and talking with a counselor or joining a support group can help you understand how stress is a ecting your body,” Carlson says.

YOGA

Leigh Leibel, a certi ed yoga therapist who works with people with cancer at Columbia University’s Irving Medical Center in New York City, was already practicing yoga when she was diagnosed with cancer in 2016. “I got the best medical treatment, but it was grueling,” she says. Yoga helped her manage stress and calm her mind. When she nished chemotherapy, she studied yoga therapy and cancer at S-VYASA, a higher education yoga institution in Bangalore, India, where she is now getting her PhD. “ e beauty of yoga,” says Leibel, coauthor of Yoga erapy Across the Cancer Care Continuum, “is that it can help teach you the tools to manage your stress at any stage of cancer.”

For cancer pain, the 2022 SIO guide recommends Hatha yoga, a gentle form that combines breathing, movement and meditation. “You can learn the tools of yoga and do them at home,” says Leibel. She has taught people how to use them during MRI scans and chemotherapy infusions.

Most yoga teachers have 200 hours of training, and yoga therapists, who have at least 1,000 hours, can complete additional cancer education. To nd a yoga teacher, check Yoga Alliance (YogaAlliance.org). To nd a yoga therapist,

search the International Association of Yoga erapists website (IAYT.org). Each type of yoga has a role, says Leibel. If you have, say, CIPN, aromatase inhibitor joint pain or bone metastasis, an oncology-trained yoga therapist is appropriate, “whereas a yoga teacher with cancer training would be beautiful to work with in a community yoga studio or a YMCA if you’re a cancer survivor who doesn’t have complex conditions or risk factors.”

AN INCLUSIVE MODEL

Integrative cancer care is becoming more available, especially at major cancer centers, but there is a long way to go. In 2006, Julie Deleemans, then a high school senior in Ontario, Canada, was diagnosed with Stage IV laryngeal cancer and had surgery (removal of her larynx, thyroid and several lymph nodes), chemotherapy and radiation. She had severe head and neck pain but wasn’t referred to any supportive care. “After four years of depression, anxiety, PTSD and bouts of suicidality, I decided no one was going to save me, so I had to save myself,” she says. She learned MBCR, improved her nutrition by eating more high- ber plant-based foods and started receiving massage therapy and acupuncture treatments. She exercises and practices yoga daily. Deleemans’s pain is now under control—“a 1 or a 2,” she says. In 2022, Deleemans completed her PhD in psychosocial oncology, with a focus on integrative oncology, but she says, “I wish I’d had the supportive care I needed right after treatment—it would have prevented a lot of su ering.”

Although half of all people with cancer use integrative care, there are signi cant health disparities. Even proven approaches may not be covered by insurance. Surveys reveal that people who seek integrative care are more likely to be well-educated, employed, insured, white and female; practitioners, too, are more likely to be white, heterosexual, woman-identi ed and nondisabled, according to an SIO survey.

Cancer survivor Marsha Banks-Harold, an engineer and certi ed yoga therapist and trainer specializing in trauma care, is the owner of PIES Fitness Yoga Studio. One reason she opened the studio is her experience as a large African-American woman whose greatgrandmother was enslaved. “I didn’t experience feeling welcome going into yoga studios,” she says. “PIES studio is a great place if you’re dealing with cancer, dealing with pain, large-bodied, LGBTQ+, a child, older, Black, Indigenous or any person of color,” she says. “Because I am the face of the studio, people feel safe.”

“Every patient should be treated based on evidence-based guidelines for integrative care,” sums up Cohen, the integrative medicine specialist at MD Anderson Cancer Center. “It should be part of the standard of care wherever you are treated. As a society, we need to do more. With integrative care, patients will go through the process better and, in the end, may come out even healthier than they were before they were diagnosed.” Q

CAN CANNABIS EASE PAIN?

In 1993, explorers unearthed the 2,500-year-old body of a woman near Russia’s border with China. Preserved in permafrost, the remains showed evidence of metastatic breast cancer. She had been buried with cannabis.

In the United States today, between 25% and 40% of people with cancer use cannabis, most often to manage pain, anxiety or both. Yet you won’t ƓQGFDQQDELVUHFRPPHQGHGLQRIƓFLDO guidelines for pain. “The problem is, we don’t have a lot of data to base our recommendations on,” says Heather Greenlee, PhD, MPH, founder and medical director of the Integrative Oncology Program at Fred Hutchinson Cancer Center in Seattle. One reason LVWKDWUHVHDUFKLQWRSRWHQWLDOEHQHƓWV is still largely illegal due to federal law. Integrative oncologist Donald Abrams, MD, a professor emeritus of medicine at the University of California San Francisco who practices at the Osher Center for Integrative Health, is more positive. “All animals have an endogenous cannabinoid system, and there’s good evidence that its purpose is to help us forget pain,” he says. “Cannabis is very useful in the treatment of pain.” Abrams has been an oncologist for 40 years; in the 1990s, he helped people with AIDS manage neuropathy pain, which convinced him of the botanical’s analgesic effects. For cancer-induced peripheral neuropathy, he says, using cannabis before chemotherapy may reduce neuropathy risk based on data from an Israeli observational study. He generally recommends whole cannabis—as a tincture or inhaled through a bong or vaporizer—rather than vaping an oil.

While randomized controlled studies may be lacking, many oncologists already recommend cannabis. In one survey of 400 oncologists, 67% reported that cannabis is “useful as an adjunct for pain management.”

If you smoked, you may still be at risk, but early detection could save your life.

Meet the Luckiest Unlucky Person

Kristin Smith Westbrook’s “practical memoir” covers meditation, metastatic breast cancer, grief, Calm City and much more.

TO HELP COPE WITH THE STRESS OF HER DEMANDING JOB AND life as a creative director in New York City, Kristin Smith Westbrook began meditating in 2001. Nine years later, the practice became a lifeline of sorts when she was diagnosed with metastatic breast cancer, resulting in “12 rounds of chemotherapy, a handful of surgeries, 28 radiation treatments and over 250 infusions of chemotherapy and immunotherapy medication,” as she writes in the introduction to her 2023 memoir, The Luckiest Unlucky Person I Know. Throughout her own health challenges, Westbrook also had to navigate the unexpected grief of losing a stepson to mesothelioma, a rare lung cancer. The book offers not just her personal story but also exercises and advice that can help readers deal with their own adversities. (Check out one of the exercises in our Solutions column on page 30.)

In 2017, Westbrook launched Calm City, a mobile meditation studio—not unlike the food trucks in urban centers—that she and her team take to health fairs, Fortune 500 companies, universities and government agencies. They also offer trainings and online classes—Westbrook provided workshops at the recent Young Survival Coalition Summit, teaching self-care techniques to breast cancer survivors.

Cancer Health spoke with Westbrook for our &DQ+HDOFROXPQŋWKDWOLIHDIƓUPLQJGHFODUDWLRQLV right there in our title, Cancer Heal th—and we hope our discussion will help you do just that.

)LUVWRIIKRZGR\RXGHƓQHPHGLWDWLRQDQG what drew you to it?

,XVH-RQ.DEDW=LQQōVGHƓQLWLRQSD\LQJDWWHQWLRQ on purpose. That just means you are observing and watching, and you’re doing it purposefully. A lot of times when we’re walking down the street, we’re thinking about things 10 years from now or 10 years ago. We’re not here. We’re thinking, What am I going to do when I get home?

I started meditation and exploring different ways of thinking because I was pretty miserable. I didn’t know how to operate in the world. I was reactive and depressed and lonely. And then I realized my thoughts were creating my emotions,

not the other way around, and that I could change my thoughts. [Through meditation and yoga] you also get self-awareness and self-discovery.

How did that help you deal with cancer?

Because of the meditation practices, I was able to be more in the moment. I saw myself running down into the [fearful what-ifs of the] future and I thought, I can’t do that. I have to be here. That’s when I learned “Stay on the step you’re on.” So many times in this process, I’ve gone into the future worrying about what will happen, and then that thing never happens, and the thing I’m afraid of and the story I create about that thing never really pan out the way I think—especially when getting a scan [for cancer]. Sometimes I’ll say to myself, “You want to freak out? OK, you’ve got ƓYHPLQXWHV'RLWŐ$QGWKHQ,KDYHWRJHWEDFN to this process of keeping my vibration up. Because once you go under the covers, that’s it. Your thoughts have to go in the direction that you want to be going. If you keep thinking negative things, then you’re going to get in a negative place. I’m not saying I don’t have negative thoughts. I do. I had to work hard to be more SRVLWLYH,DOZD\VVD\ŏ'R\RXZDQWWREX\WKRVH thoughts? No. I’m not buying those.”

Exercises in WKHPHPRLU help build resilience.

Meditation can also be helpful during scans and doctor’s visits, right?

Meditation has helped me immensely in that practical way because you get used to sitting still and being still. A lot RIXVDUHƓGJHW\,WDXJKW myself to not do that. I ƓUVWOHDUQHGWRPHGLWDWH by focusing on counting breaths. It’s a very easy way in. I tell that to folks who don’t know how to meditate because they think they have to clear their minds, and it’s very hard for them. But the counting process helps. It gives you something to latch on to. In the scan and during radiation, it really helps. When I did one of my radiations, it was like a laser beam, and you’re in a mold, and they clamp it down. I had to employ all these practices and stay still in my mind as well as my body. Counting helps.

Was there any advice you received that was particularly helpful?

:KHQ,ZDVƓUVWGLDJQRVHG,FRXOGQōWƓJXUHRXW how this happened to me. I was so confused. I met these girls through the Young Survival Coalition, and one said to me, “You have to listen to Tara Brach” [a psychologist, author and Buddhist meditation teacher] who gives talks, and you can listen to her podcasts for free. She has some incredible wisdom and wrote a book called Radical Acceptance. I started to understand that this is what I am and where I am. She also has a practice called RAIN, which stands for Recognize, Allow, Investigate and Nurture. For example, I would be like, OK, these thoughts and emotions are happening—I’m freaked out or pissed off—so I’m going to recognize them and allow them. Then investigate why this happens and nurture myself.

)RUPRUHLQVSLULQJSURƓOHVJRWR cancerhealth.com/stories

Was meeting other young breast cancer survivors helpful?

It was a game changer.

:KHQ,ƓUVWJRWGLDJnosed, I already had a close group of friends, but I couldn’t relate to them at that time [because they didn’t have cancer]. I also didn’t want to be the friend who was crying all the time with them. I’m still friends with many of the young survivors today.

Why write a memoir?

When you go to the doctor— and I’ve been going to an oncologist every three weeks for the past 13 years—they’re like, “Do you have diarrhea, vomiting, pain, etc.” It’s never, “How are you doing?” I needed practical advice for my mental health. That’s why I wrote the book. There’s a lot of advice on how to live your best life—like, do yoga and meditate—but not a lot of advice on how to live your best life when you’re in the middle of your worst nightmare.

Finally, can you leave us with an inspiring quote or mantra that has stayed with you?

I love Wayne Dyer, who wrote Your Erroneous ZonesWKHVEHVWVHOOHULQWKHVHOIKHOSƓHOG He helped me [via] his quote: “Change the way you look at things, and the things you look at change.”

When my stepson passed away, I was looking for books on grief, and I grabbed You Are Here by Thich Nhat Hanh, who was a Vietnamese Buddhist monk. One lesson from that book is to have compassion for yourself and others. The mantra he had was: “Dear one, I am here for you.” When I wake up in the middle of the night, freaked out in grief and fear, I just repeat that over and over. And for others too. If I notice someone else is in pain or scared, I might not say that out loud, but I might feel that. It’s such a tender way to approach yourself. Q

Westbrook in her mobile studio; on the road

Oncology Physical Therapy

What is it, and how does it help people with cancer? Physical and rehabilitation therapist Jeff Eagan, of the UCHealth Cancer Center in Fort Collins, Colorado, has the answers.

What is oncology physical therapy?

In some ways, it’s very similar to other physical therapy, but there are some unique problems that many cancer patients experience related to the disease, and we help with that. Treatment fatigue is a huge problem for 90% of patients going through chemotherapy and radiation therapy. We run an exercise SURJUDPWRVSHFLƓFDOO\DGGUHVV the fatigue. And there’s a whole host of other side effects we help with that are common for patients being treated for cancer— like lymphedema [the buildup RIŴXLGLQVRIWWLVVXH@SHOYLF ŴRRUG\VIXQFWLRQQHUYHLQMXULHV radiation side effects, like ƓEURVLV>WLVVXH VFDUULQJ@DQG

Eagan

effects of hormonal treatments for different types of cancer.

How does physical therapy help with fatigue?

Lots of good research indicates that the best nondrug intervention for cancer-related fatigue is moderate-intensity exercise. So we teach people how to do moderate-intensity cardiovasFXODUƓWQHVVWUDLQLQJDVZHOODV VWUHQJWKWUDLQLQJDQGŴH[LELOLW\ work. Studies indicate that people doing this tolerate treatment better. Exercise is helpful, but it also needs to be dosed properly, so there’s some instruction for patients. The biggest thing that patients give us feedback on is the personal connection. People really appreciate being in the gym with other cancer patients.

How can people with cancer know whether WKH\FRXOGEHQHƓW from physical therapy?

Close to 70% of people who go through cancer treatment have some type of functional GHƓFLWWKDWZRXOGEH amenable to therapy. If they’re having fatigue, weakness, pain issues— any of these really common side effects of cancer treatment—they can ask their physician

to refer them to a physical therapist, even if they’re not in a region ZLWKDQRQFRORJ\VSHFLƓFSUDFtice like mine. There are lots of therapists out there who treat cancer patients for things like O\PSKHGHPDSHOYLFŴRRUSURElems and general fatigue and deconditioning. Even patients with very advanced cancers can get stronger and improve their quality of life and function. Even though they may have, in some cases, a non-treatable cancer, I can still help them. A huge SDUWRIWKHSURFHVVLVƓJXULQJ out what’s important to them and working toward that.

What inspires you in your work?

My oncology patients are amazing. They’re some of the most motivated people. I can make a UHDOO\VLJQLƓFDQWLPSDFWRQTXDOLW\ of life and function for people whose cancer is treatable. But I also have particular interest in patients with advanced cancers and those receiving end-of-life care because I’ve also been DEOHWRPDNHDVLJQLƓFDQWGLIIHUence for them. I’ve had people in my gym working out two or three weeks before they’ve passed away because they like coming in. I’ve been surprised over and over again by patients who are at the end of life and can come in and work out and feel better. Q

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

Jeff

in the gym at UCHealth Wellness Place

7+(.,'1(<6$5($3$,52)%($16+$3('25*$167+$7 ƓOWHUEORRGWRUHPRYHLPSXULWLHVDQGH[FHVVPLQHUDOVDQGZDWHUWR produce urine. Kidney cancer, also called renal cancer, is among the 10 most common cancers in adults, with nearly 82,000 new cases estimated this year. Diagnosing kidney cancer involves a series of blood and urine tests as well as imaging tests, such as CT or MRI scans, an ultrasound or X-rays. Biopsies may also be done. The following resources offer support, education and more.

$ƦƞƫƢƜƚƧ&ƚƧƜƞƫ6ƨƜƢƞƭƲ cancer.org

The American Cancer Society offers a wealth of information about kidney cancer—from prevention to diagnosis to treatment to survival—via articles, quizzes, videos and diagrams. Its site provides updates on current research and the latest statistics—for example, kidney cancer is twice as common among men than women, and it’s more common among Black Americans, Alaska Natives and American Indians.

&ƚƧƜƞƫƧƞƭ cancer.net

Published by the American Society of Clinical Oncology (ASCO), Cancer.net features robust sections on kidney cancer with data on the different stages, treatment options, survivorship, follow-up care and more. Its award-winning free mobile app includes a symptom and side effect tracker, medication reminders and other interactive resources. Of particular use are ASCO’s “Overview of Kidney Cancer,” “Guide to Kidney Cancer” and “ASCO Answers: Kidney Cancer.”

Discover more resources: cancerhealth.com/resources

.ƢƝƧƞƲ&$1 kidneycan.org

Inspired and created by patients, KidneyCAN supports underfunded research to accelerate cures for kidney cancer. Its patient resource center features informative videos and brochures to help patients cope with their diagnosis, get answers to common questions and determine next steps.

.ƢƝƧƞƲ&ƚƧƜƞƫ$ƬƬƨƜƢƚƭƢƨƧ kidneycancer.org

7KHQRQSURƓW.LGQH\&DQFHU Association comprises a global community of patients, caretakers and medical professionals dedicated to serving and empowering those with kidney cancer through education, advocacy and research. Its carefully crafted, trustworthy website features treatment center and FOLQLFDOWULDOƓQGHUV

.ƢƝƧƞƲ&ƚƧƜƞƫ5ƞƬƞƚƫƜơ $ƥƥƢƚƧƜƞ.&&Ʈƫƞ kccure.org

KCCure, an evidence-based, patient-centered advocacy nonSURƓWŏGHGLFDWHGWRLPSURYLQJ outcomes through outreach, education and research,” offers

support groups for patients and caregivers, along with information regarding clinical trials, research grants, educational materials and more.

1ƚƭƢƨƧƚƥ&ƚƧƜƞƫ,ƧƬƭƢƭƮƭƞ cancer.gov

This site offers numerous kidney cancer fact sheets, statistics, treatment options and more, including pages devoted to advances in kidney cancer research and lists of approved drugs.

1ƚƭƢƨƧƚƥ.ƢƝƧƞƲ)ƨƮƧƝƚƭƢƨƧ kidney.org

Beyond diagnosis, staging and treatment, the National Kidney Foundation provides a complete overview on kidney cancer, including information concerning nutrition and physical activity during treatment and alternative or complementary medicine. It also includes questions to ask your doctor, such as “How long will treatment last?” and “Are there any clinical trials I should think about?” Of note is the foundation’s section on kidney transplantation, which features videos and resources about organ donation and how to manage your health after a transplant.

Cultivate a “Luckiest” Outlook

Use these exercises to track thoughts of gratitude and love and to create a library of good feelings.

“THE MORE I REMEMBERED TO feel gratitude, the better I felt,” writes Kristin Smith Westbrook in The Luckiest Unlucky Person I Know, a memoir of metastatic breast cancer and practical advice (read our interview with her on page 26). “If regret and what-ifs started pouring in, I reminded myself to return to the present moment. I knew I could change my thoughts. I decided to choose thoughts that made me feel good.” But it takes effort to rewire your brain’s tendency to dwell on fears and anxiety, and Westbrook developed exercises, including the one reprinted here, to help you see the upside of things. “Choose one to three of the exercises from this list of ‘luckiest’ practices each day for 21 days,” she instructs, adding that “you’re free to modify and ƓQGZKDWHYHUZRUNVIRU\RXŐ

THANKFUL

List three new things you feel gratitude and appreciation for.

Example: “Today, I’m grateful for: hot water, technology and my husband.”

LOVE

Name something that makes you feel good. Example: “I love cats— they are so sweet and friendly! I just really love cats. I think they are beautiful, amazing creatures with unique personalities.”

SWEET MOMENT

Capture something nice that happened today. It could be an image, a phrase or a story. Example: “I saw a woman walk up to the mailbox, hold a letter up to her lips and kiss it before putting it into the slot.”

SMALL CHANGE

Set the intention to make small changes in your life by adding or subtracting one thing. Example: “This week I’m going to get more sleep and watch less TV.”

MOVE

Choose a fun physical activity that you can do anytime today. Do it for at least 10 minutes. Example: Run, skate, bike, ride horseback, dance, jump on a trampoline or swing on the swings at the park. Whatever moves your body and gets your EORRGŴRZLQJ

INSPIRE

Write an inspirational TXRWHRUƓQGDTXRWH by someone who inspires you. Create an image of it. Type it, draw it, record yourself saying it. Save it in three different places, such as DURXQG\RXUKRPHRIƓFHRUFDU Example: “I am enough.”

—Marissa Peer

GIVE

Do one thing that makes someone else feel good. Send a text or an email telling a friend something you love about them. Example: “Dear friend, you are kind, supportive and loving, and I cherish our friendship.”

TURN AROUND

Turn a limiting and negative belief into a positive one simply by reframing it. Train your mind to search for positive thoughts. Example: “I’m not good enough to start my own business. I’ll never be successful,” turns around to: “I am a capable person, and I have excellent problem-solving skills.” Q

Excerpt from The Luckiest Unlucky Person I Know, A Practical Memoir by Kristin Smith Westbrook. Copyright 2023

© New Degree Press.

ALTERNATIVE COMFORT

These complementary approaches can help you cope with cancer-related side effects.

You don’t have to be a licensed masseuse to give someone a massage. With a gift card from 6SDƓQGHU, you can treat a loved one with cancer to a relaxing, reinvigorating massage and other wellness services, such as facials and yoga classes. Available in digital and printed form on 6SDƓQGHUFRP, the gift cards allow recipients to choose from a network of participating spas and salons. The site also offers health and wellness products, including massage and body oils.

People undergoing cancer treatment can EHQHƓWIURP products that soothe and restore dry, irritated skin caused by radiation and chemotherapy. Lindi Skin’s dermatologist-tested )LJKW%DFN Pack ($40) is a starter kit for those with sensitive or compromised skin. The pack contains sample sizes of body lotion, body wash, face moisturizer, two face serums, soothing balm and face wash. Lindi Skin products are clinically tested and made in the United States.

Studies show that exercise can alleviate cancer treatment side effects such as fatigue, depression and brain fog and reduce the risk of cancer recurrence. (See “Mind-Body Paths to Managing Cancer Pain,” page 20.) If you’re living with breast cancer, check out BeACTive, an exercise program on YouTube designed to help people like you improve cardiovascular health and reduce pain. Developed by

collaboration with Living Beyond Breast Cancer, the three-week series requires minimal equipment and covers full body function, core, balance and more.

Peripheral neuropathy, a type of nerve damage, is a common side effect of chemotherapy that usually affects the hands and feet, causing uncomfortable numbness and painful tingling. (See Basics: Neuropathy Pain, page 8.) Cooling gloves and socks worn during chemo may help prevent the onset of peripheral neuropathy. They can also provide cooling relief during and after treatment. The Healthy Hands Hand Ice Pack Wrap ($35) stays cold for up to three hours and comes with IRXUŴH[LEOHUHXVDEOHLFHSDFNV NEWGO Hand Ice Pack Gloves ($24) offer relief with a soft-knit, WHDUUHVLVWDQWH[WHULRUDQGFRROLQJJHOLQWHULRU)RUKDQGDQG foot comfort, the multilayer design of the Warrior Sisters’ Ice Gloves & Socks for Chemo Set ($45) traps cold and prevents direct ice-to-skin contact.

Some people with peripheral neuropathy

ƓQGUHOLHIZLWKOLGRFDLQHDQRYHUWKHFRXQWHU numbing medicine available as patches, creams, gels and sprays that’s found in brands such as Aspercreme and Bengay.

FHUWLƓHGFDQFHUH[HUFLVH WUDLQHU6DPL0DQVƓHOGLQ

TREATING CANCER

Cancer treatment options vary depending on the type of cancer and whether it has spread. If you’ve been on cancer treatment, take our survey to let Cancer Health know about your experience.

What type(s) of cancer do you have? (Check all that apply.)

TBladder TKidney TLymphoma

TBreast TLeukemia TMelanoma

TColorectal TLung TProstate

TOther (Please specify.):

Are you currently receiving cancer treatment?

TYes (Skip next question.) TNo

When was your last cancer treatment?

TLess than 6 months ago T1–2 years ago

T6 months–1 year ago TMore than 2 years ago

Which of the following types of treatment have you had? (Check all that apply.)

TCAR-T therapy TRadiation therapy

TChemotherapy TSurgery

THormone or TTargeted therapy endocrine therapy TNone of the above

TImmunotherapy

+RZVDWLVƓHGDUH\RXZLWKWKHLQIRUPDWLRQ provided about your cancer treatment options?

T9HU\VDWLVƓHG

T6RPHZKDWVDWLVƓHG

T1RWYHU\VDWLVƓHG

Were you adequately informed about potential side effects of the treatment?

TYes TNo

How far do/did you travel to receive your cancer treatment?

TLess than 25 miles

T25–50 miles

T50–100 miles

TMore than 100 miles

Has your quality of life been affected by your cancer treatment?

TYes TNo

Have you used complementary and alternative medicine (e.g., meditation, massage, herbal supplements) in your cancer care?

TYes TNo

Have you ever participated in a clinical trial for cancer treatment?

TYes TNo

What year were you born?

What is your gender?

TMale TFemale TTransgender TOther

What is your current level of education?

TSome high school THigh school graduate

TSome college TBachelor’s degree or higher

What is your annual income?

TLess 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.)

TAmerican Indian/Alaska Native

TArab/Middle Eastern TAsian

TBlack/African American THispanic/Latino

T1DWLYH+DZDLLDQ3DFLƓF,VODQGHUTWhite

TOther ___________________________

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.

IN THE SEARCH FOR A CURE, THEY KNOW EXACTLY WHERE THEY STAND.

ON THE SHOULDERS OF GIANTS.

For 75 years, Damon Runyon has provided funding to scientists who bet their careers on high-risk, high-reward hypotheses, concepts, and strategies. In this time, Damon Runyon scientists have advanced cancer research exponentially – because each one builds upon the achievements of those who came before.

As we celebrate this milestone of scientific achievement, we honor the scientists who have contributed to this legacy and continue to carry it forward. With them, we look to the future.

To learn more, visit damonrunyon.org

Gordon J. Freeman, PhD

Damon Runyon Fellow ’79–’81

Alexandra-Chloé Villani, PhD

Current Damon RunyonRachleff Innovator