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16 AFTER 15 YEARS, BREAST CANCER STRIKES AGAIN!
An author shares her shock and resolve regarding a second breast cancer diagnosis after many years in remission. BY EMILY RUBIN
22 DO YOU HAVE SCANXIETY?
Anxiety about scans is common for many people with and beyond FDQFHUEXWWKH\ōUHƓQGLQJZD\VWRFRSH BY JENNIFER COOK
4 From the Editor Reigning Champs
6 News
Prognosis of America’s public health care system | troubling trends in cancer | at-home cervical screening | the 7,000-mile surgery | Blood Cancer United | NCCN’s trusted guidelines get a makeover
8 Care & Treatment
Antibody-drug conjugates shine for breast cancer | psilocybin relieves depression | movement is medicine | weight-loss meds lower cancer risk
10 Voices
A husband being treated for lung cancer develops type 1 diabetes.
12 A Leukemia Diary
Peter Titlebaum thrives with CLL.
26 Can Heal
Prostate cancer survivor and advocate Charlie Hill
28 Resources
/LIHOLQHVIRUƓQDQFLDODVVLVWDQFH
30 Your Team
What is integrative oncology?
31 Solutions
Easy exercises to breathe better
32 Good Stuff Ease anxiety and give back.
33 Reader Survey
Tell us about your scanxiety.
Author Emily Rubin and Lucinda
Reigning Champs
BREAST CANCER SURVIVOR AND visual artist Pauline Decarmo was scheduled to present a solo show of paintings made after her treatment, but then lymphedema—swelling caused by the buildup of lymph ŴXLGŋVWUXFNKHUGRPLQDQWULJKWDUP
Undeterred, Demarco learned to paint with her left arm and met the gallery’s deadline. Emily Rubin, an author and writing coach in upstate 1HZ<RUNKDSSHQHGWRFDWFKWKHVKRZ
As a fellow breast cancer survivor— 15 years cancer-free at the time—she was drawn to Champion, a painting that depicts a victorious female boxer with a prominent mastectomy scar (view the painting on pages 3 and 21).
Soon after, Rubin received unexpected news: Breast cancer had returned. ChampionWRRNRQGHHSHU meaning, and she ended up procuring WKHDUWZRUNDQGKDQJLQJLWLQKHU writing studio for inspiration. She also befriended Decarmo and shared her cancer experiences with two other QHZO\GLDJQRVHGZRPHQVKHNQHZ
Rubin recounted these stories when I interviewed her about her :ULWH7UHDWPHQW:RUNVKRSVIRUWKH
Can Heal column in a previous issue. ,ZDVVWUXFNE\WKHRUJDQLFFRQQHFtions and community these artists IRUPHG/XFN\IRUXVWKH\ZHUHZLOOing to share their experiences in this issue. Turn to page 16 to read more. <RXQHYHUNQRZZKHUHLQVSLUDWLRQ will arise. Personally, I adhere to a magpie philosophy—collect those shiny objects wherever they appear, whether biblical scripture or South Park, though as a journalist, I’m partial
to the wit and wisdom of wordsmiths OLNH(SLFWHWXV0DUN7ZDLQ-DPHV %DOGZLQ'RURWK\3DUNHUDQG'RHFKLL <RXōOOƓQGLQVSLUDWLRQDQGKHOSIXO information throughout this issue, including the latest treatment news (page 8), exercises to help you breathe EHWWHU ZD\VWRJHWPRUH%ODFN men screened for prostate cancer (26) DQGƓUVWSHUVRQDGYLFHRQRYHUFRPing scanxiety (22). You’ll also meet an athlete with chronic lymphocytic OHXNHPLD DQGDOXQJFDQFHUVXUYLvor whose condition led to type 1 diabetes (10). Sharing our experiences remains a potent form of advocacy and community building. Everyone who does so is a world-class champion!
Assessing the future of care, research and cost-free screenings
America’s public health care system is not well, and the prognosis doesn’t look good. Brutal federal budget cuts, layoffs, the restructuring of agencies
DQGWKHYLOLƓFDWLRQRIKHDOWKH[SHUWVDUHPDNLQJXV sick. This roundup takes our proverbial temperature: All the vaccine experts on the Advisory Committee on Immunization Practices (ACIP) were removed by Robert F. Kennedy Jr., who leads the nation’s Department of Health and Human Services and is known as an anti-vaccine activist. ACIP sets U.S. vaccine policies, such as recommending vaccination against human papillomavirus (HPV), which causes cervical cancer. RFK Jr. UHSODFHGWKHH[SHUWVZLWKPHPEHUVZKRPDQ\ fear, could steer policy away from evidence-based science and toward ideology and misinformation. Cost-free preventive care is under attack, including certain cancer and diabetes
VFUHHQLQJVVWDWLQVDQG3U(3 SUHH[SRVXUH SURSK\OD[LV WRSUHYHQW+,97KH$IIRUGDEOH&DUH Act (ACA, or Obamacare) legally requires health insurers to cover, at no cost to enrollees, preventive services that receive an A or B grade from
Troubling Trends
Although the overall rate of new cancer cases has remained steady in recent years, a closer look at the data reveals areas of concern. Cancer diagnosesamong people younger than 50 (referred to as earlyonset cancers) are increasing. Fourteen types of cancer are on the rise among young adults when compared with 2010 rates, according to an analysis from WKH1DWLRQDO,QVWLWXWHVRI+HDOWK that looked at 33 different cancers. The researchers write that nine of these cancer types
the U.S. Preventive Services Task Force. In June, the Supreme Court upheld this requirement, stressing that the task force is overseen by the nation’s health secretary. That person is RFK Jr. As we go to press, the Wall Street Journal reports KHLVDERXWWRƓUHWKHHQWLUHSDQHORIH[SHUWV
12 million people will lose health insurance because of a $1 trillion cut from Medicaid in the reconciliation bill—aka the One Big Beautiful Bill—that Republicans passed in July, according to the nonpartisan Congressional Budget 2IƓFH$QDGGLWLRQDOPLOOLRQLQGLYLGXDOVDUH projected to lose ACA coverage because Congress IDLOHGWRH[WHQGFUHGLWVWRKHOSSD\IRUWKHSODQV Trump’s proposed 2026 budget aims to cut $33.3 billion (26%) from the health department, including $3.6 billion (almost 50%) from the Centers for Disease Control and Prevention DQGELOOLRQ IURPWKH1DWLRQDO,QVWLWXWHVRI Health. This would mean far less research for cures and treatments, fewer clinical trials and a lack of KHDOWKGDWD6RPH&RQJUHVVPHPEHUVDUHƓJKWLQJ to save and even boost funding. Stay tuned.
also increased in at least one older age group. These included breast cancer in females and colorectal, kidney, testicular, uterine, pancreatic and three types of blood cancer (lymphomas). Cancer types that increased only in younger age groups were melanoma, cervical cancer, stomach cancer, cancer of bones and joints, and plasma cell neoplasms. Similarly, a Dana-Farber Cancer ,QVWLWXWHUHSRUWQRWHGD spike in early-onset gastrointestinal cancers, which include
colorectal, stomach, pancreatic and other cancers.
People with obesity are at higher risk of developing 13 types of cancer.
$QHZVWXG\SUHVHQWHGDW(1'2 2025, the Endocrine Society’s annual meeting, showed that over the past two decades, obesityrelated cancer deaths tripled. Mortality rates climbed from 3.7 deaths per million to 13.5 deaths
SHUPLOOLRQZLWKVLJQLƓFDQW increases among women, older DGXOWV1DWLYH$PHULFDQV%ODFN Americans and rural residents.
At-Home
Cervical Screening
“The Pap got an upgrade,” boasts an ad for the Teal :DQGWKHƓUVWDWKRPH VHOIFROOHFWLQJFHUYLFDO FDQFHUVFUHHQLQJGHYLFH DSSURYHGE\WKH)RRGDQG 'UXJ$GPLQLVWUDWLRQ0RVW FHUYLFDOFDQFHUVDUHFDXVHG E\KXPDQSDSLOORPDYLUXV +39 &HUYLFDOPDOLJQDQF\ LVOHVVFRPPRQWRGD\ WKDQNVWRHIIHFWLYH+39 YDFFLQHVEXWVFUHHQLQJ FDQGHWHFWSUHFDQFHURXV FHOOVHDUO\ZKHQWKH\ōUH HDVLHUWRWUHDWDQGQRW\HW OLIHWKUHDWHQLQJ7KH7HDO :DQGōVVSRQJHOLNHWLS FROOHFWVFHOOVWREHWHVWHG IRUFDQFHUFDXVLQJ+39 :RPHQPDLOVDPSOHVWR DODEDQGIROORZXSZLWK WKHLUGRFWRUVLIQHHGHG $WKRPHWHVWVDUHPRUH SULYDWHDQGFRQYHQLHQW HVSHFLDOO\IRUIRONVZKR FDQōWDFFHVVLQSHUVRQ SUHYHQWLYHFDUH
Enhertu (trastuzumab deruxtecan) and Trodelvy (sacituzumab govitecan), two antibody-drug conjugates (ADCs) currently approved for treatmentexperienced patients, also delay disease progression for women receiving initial treatment for advanced breast cancer. ADCs use monoclonal antibodies to deliver strong chemotherapy directly to tumors, helping to minimize side effects.
The DESTINY-Breast09 trial, which included 770 people with HER2-positive locally advanced or metDVWDWLFEUHDVWFDQFHUVKRZHGWKDWƓUVWOLQHWUHDWPHQW with Enhertu plus Perjeta (pertuzumab) reduced the risk of disease progression or death by 44% over standard therapy. At two years, 70% of patients on Enhertu plus Perjeta were still alive without further disease progression, compared with 52% in the standard-therapy group.
The ASCENT-04/KEYNOTE-D19 trial enrolled 443 patients with previously untreated inoperable locally advanced or metastatic triple-negative
breast cancer who were eligible for immunotherapy. Trodelvy plus the immune checkpoint inhibitor Keytruda (pembrolizumab) lowered the risk of progression or death by 35% compared with Keytruda plus chemotherapy. At the one-year mark, 48% of Trodelvy plus Keytruda recipients and 33% in the Keytruda plus chemotherapy group were still alive without disease progression.
In both Phase III trials, treatment was generally safe, but severe adverse effects were common. Some experts have suggested it may be feasible to use ADCs as part of an induction regimen followed by less intensive maintenance therapy.
Sara Tolaney, MD, MPH, of Dana-Farber Cancer Institute, who led both studies, said Enhertu and Trodelvy could become new frontline standards of care. “It is important that we work toward shifting WKHVHYHU\HIIHFWLYHQRYHOGUXJVWRWKHƓUVWOLQHRI therapy to move the needle and improve outcomes for these patients,” she says.
Psilocybin Relieves Depression
A single dose of psilocybin—the psychoactive compound in “magic mushrooms”—administered with psychological support continued to relieve depression and anxiety for two years in a small study of cancer patients with major depressive disorder.
A cancer diagnosis often gives rise to feelings of sadness or distress, but about 25% of patients GHYHORSFOLQLFDOO\VLJQLƓFDQWGHSUHVVLRQZKLFKFDQ lead to worse outcomes and reduced quality of life. Psilocybin is a serotonergic agonist that alters perception, mood and ego function. Its potential for improving well-being in people with life-threatening illness was recognized decades ago.
Manish Agrawal, MD, of Sunstone Therapies and Aquilino Cancer Center, and colleagues enrolled 30 people at a community cancer center who had curable or incurable cancer and major depressive disorder. This open-label Phase II trial was not
randomized, and all participants received a single 25 milligram dose of psilocybin in oral capsules.
In addition, they participated in one-on-one therapy sessions with trained clinicians and group therapy before and after psilocybin administration.
In 2023, the researchers reported initial results showing that 80% of psilocybin recipients saw an improvement in depression severity at eight weeks, and half experienced full remission. In a new analysis at two years, 50% experienced a sustained improvement in depression, and 43% had a sustained reduction in anxiety.
Psilocybin combined with psychotherapy could offer “a potentially paradigm-changing alternative to traditional antidepressants requiring further VWXG\Ő$JUDZDOVD\V%XLOGLQJRQWKHVHƓQGLQJV a randomized double-blind trial is now underway.
MOVEMENT IS MEDICINE
A structured exercise program after surgery for colon cancer was associated with a reduced risk of disease recurrence and improved survival, according to study results presented at the American Society of Clinical Oncology annual meeting. Prior research has linked greater physical activity to lower cancer risk and better outcomes among patients and survivors, but these were mostly observational studies without a control group.
The Phase III CHALLENGE trial enrolled 889 colon cancer patients who had undergone surgery and completed adjuvant chemotherapy; they reported that they did not get the recommended 150 minutes of moderate physical activity per week. They were randomly assigned to either participate in the exercise program—including a tailored “exercise prescription,” coaching from a physical activity consultant and supervised exercise sessions—or receive health education
materials.
At six months, people in both groups saw an improvement in SK\VLFDOIXQFWLRQEXWWKLVZDVVLJQLƓFDQWO\JUHDWHU LQWKHH[HUFLVHJURXS$WƓYH\HDUVSHRSOHDVsigned to the exercise program had a 28% lower risk of cancer recurrence, new malignancies or death and a 37% improvement in overall survival.
Lead researcher Christopher Booth, MD, of Queen’s University, noted that the magnitude of EHQHƓWRIWKHH[HUFLVHSURJUDPZDVFRPSDUDEOH to—or exceeded—that of many standard medical therapies. “As oncologists, one of the most common questions we get asked by patients is ‘What else can I do to improve my outcome?,’” he says. “These results now provide us with a clear answer: An exercise program that includes a personal trainer will reduce the risk of recurrent or new cancer, make you feel better and help you live longer.”
Weight-Loss Meds Lower Cancer Risk
Use of weight-loss medications was associated with a moderately lower risk for obesity-related cancers and a decrease in overall mortality compared with other diabetes drugs, according to data presented at the American Society of Clinical Oncology (ASCO) annual meeting.
GLP-1 receptor agonists, such as semaglutide (Ozempic or Wegovy) and tirzepatide (Mounjaro or Zepbound), mimic natural hormones that suppress appetite, regulate insulin and slow stomach emptying. These drugs have already been shown to lower the risk of heart and kidney disease, and they may also play a role in preventing cancer and improving outcomes
For more care and treatment news: cancerhealth.com/science-news
for patients. One recent study, for example, found that tirzepatide slowed breast cancer growth in mice.
Lucas Mavromatis, ScB, of the New York University Grossman School of Medicine, and colleagues looked at medical records from more than 170,000 U.S. adults with diabetes and obesity. Between 2013 and 2023, half started GLP-1 agonists (mostly older drugs like liraglutide), and half started DPP-4 inhibitors. Overall, people who used GLP-1 drugs had a 7% lower risk of developing obesity-related cancers. The effect was more pronounced for women
EXWQRWVWDWLVWLFDOO\VLJQLƓFDQW for men. Risk reduction was greatest for colon cancer (16%) and rectal cancer (28%), but rates were similar or lower for all 14 obesity-related malignancies, including breast, esophageal, kidney, liver, pancreatic, ovarian, stomach and thyroid cancers. What’s more, GLP-1 agonist users had an 8% lower risk of death from any cause.
“Though this trial does not establish causation, it hints that these drugs might have a preventative effect,” says outgoing ASCO president Robin Zon, MD. The researchers now plan to look at the link in people without diabetes.
Cancer Can Cause Diabetes?
When her husband was being treated for lung cancer, Cyndi MacKenzie was shocked by an unexpected second diagnosis: type 1 diabetes.
IT’S HARD TO PICK ONE
pivotal moment in the four and a half years since extensive stage small-cell lung cancer (SCLC) became an integral part of our lives. Was it when the emergency room doctor shut the door and sat down to tell my husband, Ray, and me what he suspected?
7KHGD\WKHELRSV\FRQƓUPHG 6&/&ZLWKDWKUHHWRƓYH\HDU survival rate? Or was it the months after full-brain radiation in year 3 that changed my husband’s personality, drive, strength and stamina?
For me, the critical point came in month 4. That’s when Ray’s blood sugar was over 500 and, after a series of endocrinology visits and trial and error with oral medication and insulin pens, he received a new diagnosis: type 1 diabetes, requiring an insulin pump.
None of the research I had done on SCLC ever mentioned the possibility that the chemotherapy, radiation or immunotherapy entering my husband’s body could cause this particular health challenge. No oncologist had shared the chance of this happening until the diagnosis, when we were informed that many cancer patients experience this added complication.
Ray, a 6-foot-1-inch man weighing 215 pounds, had always loved food. He cooked 95% of our meals, and he
Ray MacKenzie grabs a meal after treatment on the day he learned he had diabetes. Inset: Cyndi MacKenzie.
preferred his own cooking to that of any restaurant we ever visited. For many months after the brain tumor treatment, he had no sense of smell or taste, which caused considerable weight loss, lethargy and low energy. The protein drinks and suggested diet changes have not helped, and today, at 81, he is at a consistent weight of 150 pounds. Having diabetes KDVDGGHGWRWKLVGLIƓFXOW\
His late wife had diabetes, so Ray was familiar with the challenges and routine of insulin. I am a caregiver who quickly picked up the operation of the pump and the sensor and who understood the contributing factors that cause his blood
sugar to be out of range. However, I cannot even guess the number of hours we have spent on this secondary diagnosis or the changes in our lifestyle that occur daily because of our exhaustion, the interruptions of sleep and schedules and the fact that my son’s dog shakes and hides whenever she hears the pump alarm. Perhaps I should let go of the shock I still feel that cancer caused diabetes and that no one warned XV$QRIƓFLDOKHDGVXS would not have changed a thing. This I realize, but in preparing myself for all that the life-limiting diagnosis of SCLC would bring to our lives, diabetes has been the snag that has most reduced our daily quality of life.
I’m thankful that Ray is 4.5 years into his life expectancy of 5, and I remain grateful to the many oncologists, nurse practitioners and nurses we have encountered on our journey. Heck, even the endocrinologists have been great. Cancer sucks, but so does diabetes! Q
Cyndi MacKenzie is a grantSURIHVVLRQDOFHUWLƓHGIUHHODQFH writer, a bladder cancer survivor, mother and caretaker to her husband, Ray. They reside in Lewiston, Maine, where Ray receives immunotherapy for small-cell lung cancer every four weeks.
A Leukemia Diary
Peter Titlebaum, 65, doesn’t let chronic lymphocytic leukemia (CLL) interfere with his active life.
SPORTS HAVE ALWAYS BEEN CENTRAL TO MY life. I run, bike and swim, have run marathons and done 100-mile bike rides and teach the business side of sports as a professor at the University of Dayton in Ohio. My wife, Deb, and I live in Mason, Ohio, and between us have four adult children.
December 2018
I was scheduled for an operation on my right hand for Dupuytren’s contracture [a thickening of tissues in the palms which causes the hands to curl]. Routine preoperative blood work [showed that] my white blood cells were high. My GP sent me to a hematologist/oncologist, who diagnosed me with chronic lymphocytic leukemia—CLL.
The doctor told me I had cancer but that it was the “good kind”: slow growing. He thought it was reassuring, but telling someone that they have cancer is never good. The hardest part was telling my wife—we’d been married for 10 years at this point—and my children.
January 2019
I was at zero level [or Stage 0, an elevated white blood cell count but no symptoms]. The advice was not to treat but to test my blood every three months. Watch and wait. It’s counterintuitive. But 30% of people with CLL never need treatment. Plus, there are currently over 1,000 studies and clinical trials going on about CLL, so the longer you can wait, the more options you’ll have.
I started training for my summer bike ride, a charity bike ride I created from downtown Cincinnati to Montgomery, Alabama. I wasn’t going to put my life on hold, right?
February–March 2020
My white blood cell count nearly doubled to 75,000 (normal is below 10,000). My hematologist referred
me to a CLL specialist at Ohio State University. I had written an article for the CLL Society, and Laura Alexoff, the facilitator of the Cincinnati chapter, asked if I would join a patient support group. Perhaps these people had some helpful experiences to share, I thought, and if one person can EHQHƓWIURPP\SDUWLFLSDWLRQWKDWōV gold. When I was a child, my mom and sister Joni shared a secret—asking for help is a strength, not a weakness. By asking for help, you enable someone else to give. Thus, the gift enriches both parties.
April 2020
An avid athlete, Peter Titlebaum is also a CLL advocate and a professor.
Dr. Kerry Rogers at Ohio State University gave me a second opinion. I was still at 75,000—Stage I. I also connected with Dr. Emily Curran at the University of Cincinnati, who sent my test results to MD Anderson Cancer Center in Houston. Everyone recommended to continue watch and wait.
May 2020
Looking for my next adventure before my summer class started, I got a job as an Amazon driver during COVID. I learned, even at 60, that I could still pivot. I’m still watching and waiting, but don’t kid yourself: Every time I get my blood checked, I mentally prepare myself for if and when I need some type of treatment. Exercise helps me maintain equilibrium.
June–September 2021
My white blood cell count jumped from 179,000 to 398,000. My liver was distended. It was time for treatment. My choice was either to take a single
IF YOU HAVE CLL, LET CALQUENCE
Not an actual patient.
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\PSWRPV XQH[SHFWHGEOHHGLQJVXFK DVEORRGLQ\RXUVWRRORUXULQH KHDUWUK\WKPSUREOHPVVXFKDVIDVWRULUUHJXODUKHDUWEHDW RUOLYHUSUREOHPV 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 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.
Please see full Prescribing Information, including Patient Information.
medication for the rest of my life (or until it failed)— or to undergo a year of aggressive therapy that included two drugs: an oral drug [a monoclonal antibody] and an immunotherapy given by IV. The expectation was that I would be in remission within a year. However, we wouldn’t know how long remission would last. I bet on my ability to tolerate a year of treatment. I started on my late father’s birthday, September 23. That must be a good sign, right? Next, I needed to tell my friends and family. I am a private person, but it’s important for me to be honest and vulnerable because people care about me: my family, coworkers, even my students. My wife would need people who could support her. Cancer is never just about the patient.
September 2021
I started treatment. Before the fun, you have blood drawn and an IV inserted. Then you take acetaminophen, and after an hour, they start the infusion. I always brought snacks and water. Plus, something to read or watch and a sweatshirt. (You get cold.) My doctor was concerned that I might develop tumor lysis syndrome, when a large number of cancer cells die within a short period of time, releasing their contents into the blood. Unfortunately, WKLVGLGKDSSHQ,VSHQWWZRIXQƓOOHGQLJKWVLQ the hospital. To pass the time, I walked the halls. Over the course of treatment, I experienced some diarrhea and weight loss. My workout routine adjusted. After three weeks, my white blood cell count dropped to 5,500—within normal range. Every time I went for my infusion, I brought in goodies for the nurses—brownies, cookies, buckeyes, even hot cocoa bombs. The nurses are heroes, and they are overworked or get worn down by people with negative attitudes. My positivity would rub off on the nurses.
January 2022
I hit a speed bump—I contracted COVID-19. Both CLL and its treatments can suppress immunity. My case was bad enough that I had to go to the emergency room. It was scary, as I was really out of it.
February 2022
February 24 was the last day of treatment. After
ƓYHF\FOHVRIFRPELQDWLRQWUHDWPHQW,PRYHGRQ to the maintenance stage.
March 2022
Barely a month after my treatments ended, during my week off for spring break, I spiked a fever of 102 and had chronic neck pain. At the emergency URRPWKH\ƓJXUHG,KDGYLUDOPHQLQJLWLV%\WKH end of the week, I wasn’t running a fever, so I went home. But then I got spikes from 99 to 102 two or three times a day. Weeks went by.
I saw an infectious disease expert. On a PET scan, my lungs lit up. I saw a pulmonologist, who took a biopsy. Ten days later, an answer: cryptogenic organizing pneumonia, a reaction to one of the medications I had taken. I started on corticosteroid WKHUDS\ƓQDOO\UHVROYLQJP\IHYHUDQGSURYLGLQJ some normalcy.
Since then, I’ve continued managing my CLL. While my journey hasn’t been the easiest, I know I was born to face challenges like this. I didn’t ring the bell, but my wife and I celebrated by going out to dinner with friends. We do something special every year on that date now. It’s also, of course, my father’s birthday.
July
2025
There are many people, like Liza Avruch, program director at the CLL Society, who have been a great resource. So has my monthly CLL group. I had the chance to bring a former professor, now 76, who’s still on watch and wait, to my class to give a lesson on mindfulness. A 52-year-old athlete from Scotland reached out—he’s starting the same treatment I did. It’s absolutely invaluable to have somebody who’s going through the same treatment. It’s something we can do for each other.
My advice for someone who’s newly diagnosed? You have every right to be upset. Everyone processes this at their own rate. But then there’s acceptance. You need a plan, a strategy for what you can do and control. Information is power, and community a salvation.
I choose to look at the glass as half full. I’m still biking, swimming and eating a good diet most of the time. I’ve been in full remission for three years now. I’m always going to bet on me.
AFTER 15 YEARS IN THE CLEAR, BREAST CANCER STRIKES AGAIN!
In this first-person essay, author and writing coach Emily Rubin shares her shock and resolve regarding a second breast cancer diagnosis after many years in remission.
BY EMILY RUBIN
EMILY RUBIN WAS DIAGNOSED WITH Stage II breast cancer in 2008. After a lumpectomy and the removal of eight lymph nodes, followed by chemotherapy and radiation, she completed treatment in 2010. Shortly afterward, her debut novel, Stalina —about a Russian immigrant who comes to the United States after the fall of the Soviet Union—was awarded a publishing contract, and she launched the Write Treatment Workshops for cancer patients, survivors and caregivers. Cancer Health interviewed Rubin in January for our Can Heal column, which focused on the curative e ects of art and writing. She had been cancer-free nearly 15 years and was running six Zoom
workshops a month for Mount Sinai’s cancer centers in New York City as well as several other workshops for the New York Oncology Hematology Community Cancer Foundation. Many of the resulting works were published in e Write Treatment Anthology Volume 1: 2011–2016 and Volume 2: e Pandemic Years. Book sales bene t the workshops, which are free to participants.
Emily Rubin with her rescue pup, Lucinda, in New York’s Hudson Valley
While our spring issue was at the printer’s, Rubin was diagnosed with triple-negative breast cancer—technically, not a recurrence but a second cancer—and began treatment. is unfortunate turn also presented a unique opportunity. Would she be interested, we wondered, in penning an essay about her experiences? Of course, like a true artist and champ, she accepted the challenge.
—Trent Straube
IN JANUARY OF THIS YEAR, AFTER 15 YEARS in remission from breast cancer, to my shock and surprise, a breast surgeon discovered a lump during a routine follow-up exam. is anomaly of concern had not shown up on my yearly mammogram and ultrasound just two weeks prior.
“Have you felt this before?” the doctor asked when she examined me.
I was silent with panic as I ngered the lump. My knees cracked, and I answered.
“I don’t think so?”
I’m not shy about doing self-exams, but this lump felt new and di erent from my normal dense breast tissue. Scans and a needle biopsy were scheduled for the targeted area immediately.
eyes. Holding my breath did not block the ow of tears. The technician took my hand and said, “You’re doing great.”
Everything was done e ciently and with the utmost care, but I was shaken by the invasiveness. I tried to regain some of my composure post-procedure as the sta sent me on my way with their blessings. Still shuddering, I slipped into the lavatory to take a moment and stared into the mirror with closed eyes, breathing a halting sigh of relief for getting it over with. In two days, the phone call came.
“Really? Damn!” I said to the surgeon.
“I’m so sorry,” she added, “but very glad we caught it.” e new tumor was diagnosed as triple-negative breast cancer. You’d think negative would be a good thing, but no, it was the same breast as before, but this was a new tumor and not related to the previous malignancy.
A SECOND CANCER?!? NO WAY! YES, WAY!
An author, Emily Rubin runs the Write Treatment Workshops via Zoom.
One, two—the scans were done, and I remained on the ultrasound exam table for the needle biopsy. As I lay waiting, my forehead tensed, and the back of my head felt like large screws were being tightened. Yes, I was nervous, and I tried to keep calm, saying to myself, It’s better to know— it’s probably nothing, like all the other times the last 15 years. But as the instrument tray rattled into position and the doctor assured me it would be a quick procedure, my eyes burned, and fragmented sense memories of nausea, hair loss and feeling and looking like an extraterrestrial ashed into my thoughts like Polaroids developing right before my
Ten years ago, when I reached the ve-year mark with no evidence of disease, the worry of a recurrence receded, except when I would go for my six-month and, eventually, yearly scans. With the new diagnosis, along with the distress of “the tumor is malignant,” I wondered if I had done something to bring this on. At 68, I strive to maintain a healthy lifestyle that includes regular exercise and a balanced diet. Emotionally, I was a careening roller coaster, looping around turns of disappointment, fear and frustration at
the prospect of going through cancer treatment again. Surrendering time to cancer is nothing anyone plans for, and I tried to mitigate my angst by reminding myself, You have been through this before.
When I nished treatment the rst time—after almost two years, including the monthly follow-ups—being given the all clear by the doctors was like being spun around in a pin-the-tail-on-the-donkey game and pushed out into the world to blindly nd my way back to my life. Trying to look positively at the experience, I managed to see the end of this cancer journey as an untethered life-size reset button. I was free and looked at my time on this mortal coil and thought, It’s time to focus on writing and teaching. I knew it would not happen overnight, but the desire to netune and amend my priorities was established. is year, faced with a second time around, I hoped not to let cancer derail my professional and creative life as it had the rst time. I challenged myself by deciding to keep running my Write Treatment Workshops for people affected by cancer for Mount Sinai’s cancer centers and the New York Oncology Hematology (NYOH) centers in upstate New York. I wanted to maintain my daily writing practice, which during the previous cancer had been reduced to fragments in a journal with a photo on the cover of an NYC blue and white co ee cup crushed on cement. e rst time, inspired by a very sensible friend who also had cancer, I kept the journal and organized all my medical records and receipts in a binder that grew to six or seven inches thick over the two years. I still have the binder and laugh at the photo that I placed on the cover of a happy-golucky child wearing a red bandanna and holding a puppy.
Founding the Write Treatment Workshops in 2011 coincided with the publication of my debut novel, Stalina is ful lled my dream of publishing—and my desire to give back to the community that helped cure my cancer. Encouraging others to write while they processed life during times of illness motivated me to write and to become a better writer. Another writerly dream came my way when I was o ered a fellowship for an MFA in creative writing. When I was re-diagnosed, I was working on a third novel started a couple of years earlier. I was still running my Write Treatment Workshops. e workshops and some freelance writing were my sole sources of income. For years, I worked as a freelance television stage manager, which a orded me time to write, but with the industry changing, there was less work. For the most part, I am writing, teaching and submitting work for publication.
But now, the reset button is ashing again, this time in force while I go through treatment.
A TREATMENT PLAN AND SUPPORT NETWORK
Earlier this year, when I was on the phone with the doctor and she told me the bad news, I tried to remain calm, but I was humbled and even slightly embarrassed that I thought a recurrence or a second cancer was not going to happen.
e doctor tried to reassure me. “You took control— you’ve got this,” she said.
To add another life event into the mix, my mother passed away at age 103 just three weeks before my new diagnosis. She was remarkable and lived a very productive life and is greatly missed. Mourning the loss during the dizzying scheduling of consults, tests and scans was only a partial distraction. I missed talking to her every night by phone or in person. She was a role model for many and a big supporter of my writing. No time to wallow in a pity party, though; instead, I donned the proverbial boxing gloves and stepped once again into the cancer ring. I named this new tumor Lefty 2, the successor to the previous tumor, which I called Lefty. My doctors, nurses and hospital sta , along with my stalwart husband and friends, many of whom had been through this with me the rst time, were there for me again. Added to this support was our rescue pup from Puerto Rico, Lucinda—13 pounds of terrier mutt who since day 1 of this diagnosis has been constantly by my side, providing unconditional love, devotion and delight.
I live in New York’s Hudson Valley and have been receiving chemotherapy at the NYOH facility in Hudson. Because of a small-world coincidence, my previous surgeon from 15 years ago is now practicing in Poughkeepsie, having established a comprehensive breast cancer center at Northwell Health/Nuvance Health.
“So good to see you,” Dr. Boolbol, the surgeon, said when my husband and I went for the initial consult.
We all nodded and answered simultaneously with a laugh and the tired cliché, “Wish it were under better circumstances.”
I would be juggling between two hospital systems, but everyone involved assured me that they were 100% behind my choices, and the goal was to cure my body of cancer. My oncologist, Dr. Maria eodoulou at NYOH in Hudson, knew Dr. Boolbol professionally, which was a big help as we made a plan for treatment.
I felt like I scored a win-win, but my head was still
spinning from poring over calendars and multiple locations for tests, scans and consultations. My therapist reminded me to be careful driving and crossing intersections. e anxiety of waiting for test results is real, an unnerving distraction. e new round of tests, which would determine my course of treatment, brought good news. e PET/CT scan showed no sign of cancer anywhere else in my body, the MRI showed no lymph nodes were a ected and the BRCA1 and 2 mutations were negative. e tumor, however, would require chemotherapy to make surgery easier and more e ciently remove the cancer.
I am blessed with a caring and respectful husband, who also makes me laugh at life’s absurdities. He has an outwardly calm, loving, wiseass sense of humor, but he also doesn’t hide his inner worry. We are facing this together, and it has brought us even closer (surprising to us both after 32 years of marriage). I shared my diagnosis with my writing workshop participants and my writing cohort, with whom I meet every day on a website for writers and lovers of literature, e24HourRoom.org. Writing and reading books together started as an antidote to the isolation of the COVID-19 pandemic, and, as I go through the isolation of treatment, the respite continues.
As a writing mentor to many dealing with cancer, I hoped my health would not bring them additional worry. e specter of mortality is very close in my workshops, as over the years we have lost writer friends. When I told them the news, there were some sticky moments, and I did see fear cross faces, which is understandable, but ultimately, the cancer community became a built-in support system. I was glad to have decided to keep the workshops going, and it became more evident than ever that each person’s processing of illness, whether their own or that of others, is solely theirs, but the collective can and does help allay fears.
My chemotherapy regimen began in mid-March and was scheduled through early September. From day 1, I was made aware of the many advances in treatment during the last 15 years. I hoped the clinical trials I participated in
I HAVE BENEFITED FROM IMPROVEMENTS IN TREATMENT.
had helped—thank you, science! e rst time around, immunotherapy was barely in force and genetic testing was still in its edgling stages. I have already bene ted from both improvements in treatment. e chemotherapy with some immunotherapy support was not as debilitating as it was before—a huge relief! Almost ve months into treatment, chemotherapy was stopped earlier than expected because the tumor had shrunk signi cantly. My doctors were thrilled, and, even though it was out of the box, we moved forward with surgery. In mid-July, I had a mastectomy of the left breast at Dyson Breast Center, part of the Vassar Brothers Nuvance Health facilities in Poughkeepsie.
A SMALL GESTURE MAKES A DIFFERENCE
As I was processing all these developments, memories of surgery, chemo and radiation lingered. Amid some of these tough moments, I found comfort remembering an incident on a subway platform when I was going through chemo the rst time:
It was the middle of a heat wave in August 2009. I had already had surgery—a lumpectomy with lymph nodes removed—and was exhausted and nauseous from chemotherapy. I felt dejected and unnerved in the dankness and claustrophobia of the crowded subway while lamenting the fact that my last round of chemo was a couple of months out. I was bald, sweaty and feeling sorry for myself while waiting for the F train, when out of the crowd, a man with a shaved head (maybe it doesn’t matter, but he was very t and quite attractive, probably early 30s—I was 53 at the time) came up to me with a big smile and raised his st for a bump, the whole time acknowledging my bald head. After a highly energized leap and contact of solidarity, he disappeared into the crowd. I stood taken aback but with a smile spreading across my tired face. His playfulness made me feel present, seen, strong and part of humanity, something bigger than my internal sorry self. e unexpected connection rejuvenated my excitement for the pulse of this audacious and resilient city, even in the oily humidity of the underground. I stood taller, my eyes cleared with a joyful release of tears as the train rattled into the station.
I tell this story and have turned it into a writing prompt: “Describe a small gesture that made a di erence in your day.” For me, the moment was poignant, playful, secretive and subversive—a reminder of how connecting with others also brings us back to ourselves, to our goals and to life. Another reset.
THE CANCER CONNECTION
From the rst time I was diagnosed and again now, having cancer has opened the door to friends who nd themselves or a loved one with cancer to connect for support—which goes both ways—to talk, to get and give advice and referrals or simply to vent. Only a week into my new diagnosis, two women I know well—a manager of the local farmers market where I have been a vendor for 10 years and a former participant in my workshops—were in touch to say that they had been diagnosed with breast cancer at the same time. As rsttimers, they were glad to have an experienced old-timer to talk to.
My husband, writing family, local friends and medical professionals have been overly generous in their support, sending food and loads of o beat, thoughtful and amusing cards, texts and emails and giving rides to appointments. A special connection I made this time was with local cancer survivor and artist Pauline Decarmo. With the support of her gallery, LABspace, in Hillsdale, New York, I added her artwork to our art collection and now have a new friend and collaborator. (See sidebar.)
Finally, I would like to share that I wrote a portion of this essay during my chemo/immunotherapy infusions at NYOH. e highly professional, determined and empathetic nurses keep the room quiet like a study hall, and I have come to see these sessions as a curative time for my body as well as my creative and emotional interiority. I feel the energy from all that is going on (maybe that’s partly the steroids), and it helps to feel centered and productive. For those who have the option, I recommend getting a port for the infusions. For me, it leaves my two hands free to gesture while talking with my patient and nurse partners, and I can shift to use all 10 ngers at the keyboard when inspired. Together, our lives coalesce as we assess and reect. In between listening to others’ life stories, I write about this second time around with cancer and my connection to this ever-growing community, trying to understand and cure cancer for every living thing. Q
CHAMPION: PAULINE DECARMO, ARTIST AND CANCER SURVIVOR
PAULINE DECARMO IS A VISUAL artist and breast cancer survivor. I met Pauline at LABspace gallery in Hillsdale, New York, during a solo show of her work in October 2024. The exhibition featured all paintings made after her treatment for breast cancer. She was suffering from lymphedema—swelling due to buildXSRIO\PSKŴXLGŋLQKHUGRPLQDQWULJKW arm and felt that she wouldn’t be able to meet the proposed deadline. After encouragement from gallery owners Julie Torres and Ellen Letcher, Decarmo began using her nondominant left hand and created a series of paintings. When I viewed them, I was struck by the rawness and energy. One painting, titled Champion, depicted the torso of a female boxer, arms raised, wearing red boxing gloves and a crown at a jaunty angle. On the left side of her chest was a mastectomy scar, and from shoulder to shoulder, the word champion was emblazoned like a tattoo.
Above: Emily and Pauline Below: Champion
I related to the painting and had it in mind while brainstorming ways to raise funds for my Write Treatment Workshops. I thought it could be a perfect image for a campaign or even a logo for an event. I contacted the gallery to inquire about the painting. A week later, in January 2025, I was diagnosed with a second breast cancer.
The painting immediately took on a larger and familial meaning. I have rarely felt so physically connected to a work of art. I wanted to live with Decarmo’s Champion. Today, because of the generosity and support of Pauline and the gallery owners, the painting hangs in my writing studio, a reminder of the importance of art in our lives for joy, solace, inspiration and community.
—Emily Rubin
Anxiety about scans is a common experience for many people living with and beyond cancer, but they are finding creative ways to ease its grip.
BY JENNIFER COOK
“SCANXIETY” MAY NOT BE A FAMILIAR term, but what it sums up—the fear and anxiety that can arise before, during or after imaging scans and other kinds of testing, such as blood work—is far from unfamiliar to many people with cancer. Even cancer-free survivors often continue to undergo follow-up testing to check for recurrence, which can cause a lot of angst, what-if worries and sleepless nights.
With scans and lab testing “we can potentially gain a great deal of information about what’s happening inside our bodies,” says psychologist JB Ward, PhD, a melanoma survivor and assistant professor of physical medicine and rehabilitation at Vanderbilt University Medical Center in Nashville. “We know that the results are then often used to make decisions or predictions about our future and health and well-being. So there’s a lot of emphasis on this one moment in time, this one outcome.” It’s understandable that the anxiety this situation triggers can be “really signi cant for people,” she says.
Ahead is a deeper look at scanxiety, what researchers are learning about it and how people with cancer as well as survivors and their supporters have learned to live with it and soften its impact on their lives—and how you can too.
SCANXIETY’S SCOPE
Although scanxiety research is still in its infancy, scientists are starting to have a sense of who may be a ected by the condition and what their pain points are. A pilot study published in the journal Lung Cancer in 2016, for example, found that 83% of those who had advanced lung cancer experienced some level of scanxiety regarding computerized tomography (CT), positron emission tomography (PET) or magnetic resonance imaging (MRI) scans. And their distress appeared to last beyond the time period around the
scan, suggesting it may have an ongoing e ect on their lives.
“Some people are more anxious about the actual procedure itself—being inside the scanner, for example, or having an uncomfortable procedure, like receiving contrast dye for a particular scan,” says Heather Derry-Vick, PhD, a clinical psychologist in the department of psychiatry and behavioral health at Hackensack Meridian School of Medicine in Nutley, New Jersey, who studies scanxiety. “Others are more nervous about the results and what those might show for their illness and their treatment and prognosis—and the uncertainty that comes along with that.” And some people have anxiety about both, she adds.
Derry-Vick’s views are informed, in part, by a review she led of 36 studies on scanxiety published in the journal Cancers in 2023. It found that the most common purposes of scans were routine posttreatment monitoring to detect disease recurrence and routine monitoring to detect disease progression or treatment response.
Research suggests that the greatest amounts of stress were associated with waiting a long time for test results, having to undergo additional testing due to murky results and being a generally anxious person. Scanxiety may also prevent important information from sinking in. One study found that advanced cancer patients who were particularly anxious before meeting with an oncologist about their scan outcomes were less likely afterward to accurately report the results than those who were less anxious. “We found it concerning because these scans are so important for people to understand their illness,” DerryVick says. “Finding ways to minimize these e ects is really important so that patients can continue to be well informed about their cancer and their treatments.”
SCANXIETY SYMPTOMS
Feeling worried. Disrupted sleeping. A sense of dread. Nausea or trouble eating. Irritability and crankiness. A racing heart. Tightness in the chest. Having trouble concentrating. Feeling restless, agitated or tense. ese are some of the symptoms that people with scanxiety have reported experiencing, according to a 2021 study in the journal Supportive Care in Cancer. “When I have the anticipation of that scan or that result, I have trouble sleeping, my heart rate increases, I have a really hard time concentrating and I get distracted,” says Ward, the psychologist and melanoma survivor. “But it varies for everyone. A lot of people can probably relate to my experience, and others have di erent things that happen for them.”
“Every three or four months when I have my scans, the week before, I start to not feel well,” says Adrienne Goldberg,
COPING STRATEGIES
Learning which strategies may help alleviate your scanxiety involves taking WLPHWRUHŴHFWRQ\RXU personal experience, says Heather Derry-Vick, PhD, a clinical psychologist at Hackensack Meridian School of Medicine in New Jersey. To get a sense of your patterns, ask yourself when your anxiety is more likely WRŴDUHXS7KHIROORZLQJWLSVPD\ help you ratchet down scanxiety’s hold; some of them are drawn from Derry-Vick’s current research.
Address the scan procedure if it makes you anxious.
If you feel (or anticipate feeling) claustrophobic or physically uncomfortable during a scan, try to alert your medical team in advance for support. They might be able to prescribe a medication to manage the short-term anxiety or adapt the procedure somehow, like by using a wider machine, Derry-Vick says.
Determine how you want to get test results. Receiving results through a patient portal can be a double-edged
37, who had a bilateral mastectomy and radiation for breast cancer in 2024, only to have the cancer metastasize to her spine. “I usually have a stomachache or a headache. I like to think I’m probably sick from something else, but I know every time it’s because of the scans. Even before cancer, when I was worried about something or nervous, it went into my body.”
In 2018, Ella Maslin Fink was diagnosed with aggressive papillary thyroid cancer and had her thyroid removed, followed by radiation. Her scanxiety was particularly acute in the critical months after surgery and radiation treatment. “When you don’t know if the surgeon got all the cancer out or whether the treatment actually worked, it’s absolutely terrifying to think about what might happen to you, whether there’s more treatment or they have nothing left to o er you,” she says.
sword, according to Derry-Vick. On the pro side, it can shorten the waiting period between a scan and results, which for many is the most stressful time. “People feel empowered or engaged by accessing their results directly,” she says. It can also give you the space to process the information and develop a list of questions before meeting with your doctor.
On the con side: Confusing or concerning results can be hard to interpret without the help of a medical provider. “For me, reading the result on the portal can cause a lot more anxiety,” says JB Ward, a melanoma survivor who waits to speak with her doctor about results. To resist the temptation to check your portal, she suggests turning off phone alerts or having a trusted person help keep you from logging in.
Write things down.
If you’re concerned about test results and questions swirl around in your mind, write them down. It can help manage your stress in the moment as well as help make sure your questions are answered when you see your health care provider, Derry-Vick says.
Engage in activities that are pleasurable or meaningful to you. Plan pleasurable activities or hobbies around the time of your scan or afterward. It can help pass the time, occupy your mind in a positive way and keep you engaged in what you love to do. “I draw or paint,” says artist Rachel Mindrup, who is working on a bright, colorful series of paintings she’s calling The Eloquent Brain. “It keeps me from sitting around, being idle and worrying.”
As a Taylor Swift fan, breast cancer survivor Adrienne Goldberg has used Swift’s lyrics to document her journey. The day VKHKDGDVSLQHELRSV\WRƓQGRXW whether her cancer had spread, her board at the hospital read, “Are we out of the woods yet?”— words from a Swift song from her album 1989. “It helped me deal with rough times by thinking of her lyrics and how I can use them to calm me down and bring me joy.”
Try relaxation exercises. Exercises like deep breathing, progressive muscle relaxation, guided imagery and meditation can help on a day-to-day basis, Derry-Vick says. She notes that
Rich Sauser, a technology risk manager for a nancial organization who lives in Mount Holly, North Carolina, has been on active surveillance for prostate cancer for about a year. e score on his PSA test, which measures prostate speci c antigen, recently rose, which set o his anxiety. “You’re always wondering because it is living in you, and you’re trying to change supplements and your diet and exercise,” he says. “Will any of these things make a di erence? And when you try, you’re like, My gosh, I failed, because it went up again.”
Scanxiety isn’t limited to people who have cancer and survivors; it can also a ect their caregivers and family. Henry, the 21-year-old son of Rachel Mindrup, an artist and associate professor of drawing and painting at Creighton University in Omaha, was diagnosed with neuro bromatosis (which causes tumors to grow along
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“And then I get anxiety again when we’re driving to St. Louis [for another scan]. You kind of get lulled into thinking everything’s ne for two or three months, and then it’s like, ‘Oh, here we go again. What are they gonna nd this time?’ I always say you live life between the scans.” Q
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Prostate cancer survivor Charlie Hill frames his advocacy around issues of intimacy and includes the Black church.
AFTER MORE THAN TWO decades of sharing his experiences as a prostate cancer survivor, Charlie Hill, 81, has learned a thing or two about successful advocacy. He has also earned a nickname: “I talk so much about it, people started calling me the Prostate Man,” Hill says. A retired human resources leader at Landmark Communications, Inc. and a board member on numerous civic, health and business groups, Hill cofounded the Hampton Roads Prostate Health Forum in 2007 and currently helps lead the QRQSURƓWōVRXWUHDFKLQ1RUIRON Virginia Beach, Hampton Roads and neighboring areas in Virginia. (Hill also met his second wife through the group.)
7KLVVXPPHUWKHQRQSURƓW joined the First Baptist Church 'HQELJKLQ1HZSRUW1HZV Virginia, to hold a full-service Prostate Cancer Early Detection event. Hill also led an educational session at the Hampton University Ministers Conference. Currently, he and his team are gearing up for the fourth annual 3URVWDWH&DQFHUDQG0HQōV+HDOWK Fair held Saturday, September 27, at the Hampton University Proton Cancer Institute, where they aim to get 500 men tested on-site for prostate cancer. You
can visit HRProstateHealth.com
WROHDUQPRUHDERXWWKHJURXSōV events—and to access educational materials and videos. Cancer Health spoke with Hill for the latest installment of our Can Heal column—the empowering phrase “Can Heal” is right there in our title. He graciously shares his personal journey with numerous health challenges and offers inspiring insights along the way. Our interview has been edited for clarity and length.
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0\ƓUVWZLIHZDVGLDJQRVHG with lung cancer. We were in shock. She was a nonsmoker and young—in her early 50s—but that was a gift for me because it opened my eyes to what could happen. We shared some doctors, and one said to me, “You should get tested [for various other health issues].” One doctor ŴDJJHGVRPHWKLQJVKHVDZ out of range regarding prostate cancer. That was a shocker to me. I had no symptoms, my PSA was 2.0-something and my dad never had it. So we did a biopsy, and, lo and behold, it came back with evidence of prostate cancer. I ended up at Johns Hopkins, where they called me the “nosymptoms guy,” and I decided
to do surgery in 2002. I asked if they could get rid of the cancer but still allow me to have sexual funcWLRQ,ZDVLQP\VDQGGLGQōW want to shut down totally. They said there was a fairly new nerve-sparing proceGXUHŋ,GRQōWWKLQNLWZDV computerized like today—but I was delighted.
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They removed the entire prostate gland. Things went well, but then I had a recurrence a couple years afterward, in the area where the prostate was. I was treated with radiation, which was effective. ,ōYHKDGQRPRUH>UHFXUUHQFHV@ after all these years.
:KDWPRWLYDWHG\RXWR VSHDNSXEOLFO\DERXWWKLV" Through dealing with this and ZLWKP\ƓUVWZLIHōVFDQFHU, realized how important it was to have someone to talk with ZKRNQRZVZKDWWKH\ōUHWDONLQJ about. People hardly talked about cancer, but when you DGGŏVH[JODQGŐLWōVUHDOO\QRW an easy topic. I concluded that if I survive this, one thing I
would do is help people understand what they need to know—both men and women. Women were easier to convince to talk about it, but they were pushed away by the men.
From your experience, what’s the best way to approach this topic? I talk about intimacy. I used to use the word sex, but it made too many people uncomfortable. Women, for sure, want to talk about intimacy. I have actually experienced what a lot of people are reading about and don’t have anyone to talk with. They ask questions on topics like insurance and functionality, like, “Could you have an erection and control urination?” And I tell them my experiences.
CANCER AND OTHER HEALTH ISSUES HAVE NOT STOPPED ME FROM LIVING A HIGH-QUALITY LIFE.
I say, “Look, as we all get older, we’re going to have health issues, and we need to take care of them in time to make a difference. If you deal with [a health issue] before it’s a known problem, chances are greater that it will be treatable.” I’m public about my situation. When I was DFDUHJLYHUIRUP\ƓUVWZLIH,GLG crazy things, like work all day and stay up with her at night. And you know what happened to me? I had a heart attack in 2001. Since the heart attack, I learned to eat better and exercise. I also have lymphoma [a blood cancer], and I have to check that out on a regular basis. And I have Dupuytren’s contracture [a thickening
of tissues in the palms that causes the hands to curl]. I say, “Look at me, cancer and other health issues have not stopped me from living a high-quality life. You can have medical conditions, and it’s not the end of the world, but you have to do what’s appropriate for your health and wellness.” I talk about these things in the context of a person who is living it. And it becomes inspiring. People think, Maybe I’ll get better too. Maybe it will make a difference if I stop drinking or eating poorly. It becomes real. It’s important to capture these positive stories.
You hold a lot of educational sessions at churches. What’s the connection?
The church is so important, especially in the Black community, where prostate cancer numbers are the worst. I’ve been going to church all my life. Even though the churches have weakened in [attendance] numbers, the Black churches continue to be strong and effective in reaching Black men. When you connect those things— the church, and include both men and women, and then talk about health and wellness, doing better in your life—then it becomes an attractive opportunity. That formula is working. And the church makes people more comfortable. It’s the PRVWHIƓFLHQWZD\WRPDNH a positive difference in the short term. It will become increasingly more helpful as we go forward.
Finally, aside from doctors and treatments, what has helped you heal and cultivate such a positive attitude?
The short answer is I have the satisfaction of knowing that what I do can help other people and other families. When we have open conversations about what can be done before a diagnosis, it makes a huge difference. I want to see more and more Charlie Hills. Q
From left: prostate cancer advocates Golden Bethune-Hill and Charlie Hill with former Hampton Mayor George E. Wallace
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The American Cancer Society website’s “Financial and Insurance Matters” section offers primers on health insurance, how to manage medical bills and more.
2IQRWH <RXōOOƓQGDYDOXDEOH roundup of resources to help with expenses, such as Hope Lodge and Ronald McDonald House, patient aid programs at Blood Cancer United and more.
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&ƚƧƜƞƫ)ƢƧƚƧƜƞƬ FDQFHUƓQDQFHVRUJ &UHDWHGE\WKHQRQSURƓWV7ULDJH Cancer and The SAMFund, this educational tool kit is organized by clinical trials, disability insurance, employment issues, health insurance appeals and more.
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What Is Integrative Oncology?
Heather Greenlee, ND, PhD, MPH, is a naturopathic doctor and the medical director of the Integrative Medicine Program at Fred Hutchinson Cancer Center in Seattle.
You practice integrative and naturopathic medicine. What does that mean?
I joined Fred Hutchinson Cancer Center in 2017 to start our Integrative Medicine Program. Integrative medicine is the evidence-based use of mind and body practices, natural SURGXFWVDQGOLIHVW\OHPRGLƓFDtions from different traditions alongside conventional medicine. Integrative oncology combines integrative therapies with conventional oncology care. It aims to optimize the health, quality of life and clinical outcomes of people across the cancer care continuum and to empower people to prevent cancer.
Is there evidence that these forms of medicine can help to manage cancer?
Yes! The Society for Integrative Oncology (SIO) and the American Society of Clinical Oncology have published clinical practice guidelines on the evidencebased use of integrative therapies for symptom management—
VSHFLƓFDOO\SDLQIDWLJXHDQ[LHW\ and depression. [Those can be found at integrativeonc.org.] SIO also offers online modules for patients to learn more.
What are some examples of approaches you use?
at any time after a cancer diagnosis. We help patients manage the symptoms and side effects of cancer and its treatment as well as work toward optimizing health and wellness.
Are integrative medicine practitioners widely available at cancer centers?
I’m trained as a naturopathic doctor, or ND. Naturopathic medicine emphasizes disease prevention and promotes wellness through the use of natural therapies. Naturopathic doctors attend four years of naturopathic medical school.
I spend time talking with my patients about nutrition, physical activity, restful sleep and stress management. I recommend acupuncture for many of my patients as a non-pharmacologic approach to managing pain and other symptoms.
Greenlee sees patients and runs a lab.
I recommend our website CookForYourLife.org for healthy recipe ideas and for dietitianapproved information on cancer and nutrition. We send out a newsletter every two weeks, and people can follow us on our social media too. [Editor’s note: CancerHealth.com highlights one of their recipes each Friday.]
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At Fred Hutch, we provide integrative medical care to patients
Most cancer centers now offer some kind of integrative therapies or services, whether it be mind-body medicine, like meditation or yoga; acupuncture and massage; or integrative medicine consults. At Fred Hutch, we have a group of providers who offer integrative medicine consults, including an MD, NDs, a nurse practitioner and a physician assistant. We also have a team of acupuncturists. We have two pharmacists who focus on integrative medicine and nurses who provide information on symptom management.
What inspires you in this work?
My patients are amazing. I learn from them every time I’m in clinic, and I bring that information and inspiration back to my research lab. Every day I’m in clinic, a patient asks me what they should eat, if they should be taking any supplements and what they can do to help themselves tolerate their treatment better. Our research aims to answer all those questions. Q
Who’s on your team? cancerhealth.com/team
Breathe Better
Sometimes you can manage shortness of breath by simply exercising your options.
THE AVERAGE PERSON TAKES ALMOST 22,000 BREATHS each day, but most of us don’t breathe properly. This can become a serious issue for people living with cancer and other chronic FRQGLWLRQVZKRKDYHGLIƓFXOW\EUHDWKLQJ7KHPHGLFDOQDPHIRU this scary experience is dyspnea. Its causes vary and include the effects of cancer and certain treatments, fatigue, anxiety and other health issues, so it’s important to check with your health care team if you struggle with dyspnea. Fortunately, in many cases, basic breathing exercises can help. They can reduce stress, shift your focus away from pain, boost lung capacity and improve overall wellness. The four techniques below are often UHFRPPHQGHGIRUEUHDWKLQJHDVLHUDQGPRUHHIƓFLHQWO\7KH\FDQEHSHUIRUPHGWKURXJKRXWWKHGD\ and require no special equipment. Give them a try, and soon you’ll say bye-bye to breathlessness.
Diaphragmatic breathing. The diaphragm is a dome-shaped muscle located just below WKHOXQJVDQGKHDUWDQGDERYHWKHDEGRPLQDOFDYLW\,WFRQWUDFWVDQGŴDWWHQVZKHQ\RX inhale and relaxes when you exhale. Using your diaphragm to breathe requires less energy and helps engage your whole lungs, which increases oxygen in your blood and lowers blood pressure and heart rate. Here’s how to practice the technique. While lying RQDŴDWVXUIDFHRUVLWWLQJLQDVXSSRUWLYHFKDLUSODFHRQHKDQGRQ\RXUEHOO\MXVWXQGHU your rib cage, and the other on your chest. Inhale through your nose and note how your breathing moves your hands. If properly done, the hand on your chest (the upper hand) should remain stationary, while the hand on your tummy will rise and then fall when you exhale. Slowly breathe out through pursed lips, while gently pulling your abdomen toward your spine. Repeat several times.
Pursed lips breathing. One of the simplest ways to control shortness of breath, this technique slows your breathing rate and helps open up your airways, allowing more oxygen to enter the lungs. You can do it while relaxed, like while watching TV, or when stressed or moving around. Here’s how: Breathe in slowly and deeply through your nose like you’re smelling a rose and exhale slowly and gently through pursed lips, as if you’re blowing out a candle.
Scapular squeezes. Sit in a chair or lean back in bed with your back supported. Relax your arms at your sides, and turn your palms face up. While inhaling through your nose, squeeze your shoulder blades, or scapulae, back and down so your chest puffs out. Relax as you exhale through pursed lips. This technique expands your chest wall and moves your ribs so you can take deeper breaths. Bonus: These short exercises can reduce tension and improve posture!
4-7-8 breathing. Try this in a relaxed position, even lying in bed. Inhale through your nose for 4 counts, hold your breath for 7 counts, then exhale through pursed lips for a count of 8. Relax for a few seconds, then repeat. This technique has a tranquilizing effect and can be used to reduce anxiety, manage cravings and help you fall asleep.
This fall, relax with soothing weighted blankets, natural skin care and cozy clothes that support cancer research.
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Weighted blankets can help alleviate some of the stress and anxiety associated with cancer and treatment. Mosaic’s Colorful Cotton Weighted Blankets ($149.95) —available in several sizes, weights and designs—offer an extra layer of comfort during treatment or at the end of a long day. Each blanket is handmade in Texas using ethically sourced materials and is sure to improve sleep quality, SURPRWHUHOD[DWLRQDQGUHGXFHVWUHVV 0RUHWKDQƓYHVWDU ratings couldn’t be wrong.) If you experiHQFHKRWŴDVKHVIURPWUHDWPHQWWKH Coolmax Cooling Weighted Blanket ($149.95) is made with breathable fabric designed to keep you cool and calm throughout the night.
One in eight ZRPHQLQ the United 6WDWHVZLOOEHGLDJQRVHG ZLWKEUHDVWFDQFHULQWKHLU OLIHWLPH7KLVDXWXPQVWD\ ZDUPDQGVKRZ\RXUVXSSRUWZLWKWKH1DWLRQDO %UHDVW&DQFHU)RXQGDWLRQōV 1 in 8 Breast Cancer Awareness Sweatshirt ($58)IHDWXULQJHLJKW XQLTXHO\LOOXVWUDWHGŴRZHUV (DFKSXUFKDVHVXSSRUWV WKHIRXQGDWLRQōVPLVVLRQWR XSOLIWDQGLQVSLUHKRSH
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SCANXIETY
Feeling anxious, worried or stressed before, during or after medical tests and scans is known as scanxiety. It’s a common experience—especially for those undergoing cancer treatment and concerned about a recurrence. Take our survey and let Cancer Health know about your experience getting regular cancer scans and related follow-up tests.
Have you ever been diagnosed with cancer?
TYes TNo
Have you ever been treated for cancer?
TYes TNo
What type of cancer tests or scans have you had? (Check all that apply.)
TBiopsy TBlood test (including PSA)
TColonoscopy TCT scan
TEndoscopy TGenetic test
TMRI TPET scan
T Ultrasound TX-ray (including mammogram)
TOther (Please specify.): __________________
How anxious are you before a test or scan?
TVery anxious TSomewhat anxious
TNot anxious
'R\RXƓQGLWGLIƓFXOWWRFRQFHQWUDWH or focus before a test or scan?
TYes TNo
Do you practice any coping strategies to manage scanxiety?
TYes TNo
Have you experienced any of the following physical symptoms before or during a test or scan? (Check all that apply.)
TIrritability TMuscle tension
T Nausea TRapid heartbeat
TSweating TTrouble sleeping
TOther (Please specify.): __________________
How anxious are you while waiting for the results of a test or scan?
TVery anxious TSomewhat anxious
TNot anxious
Have you ever discussed scanxiety with your doctor?
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.
THE PROBLEM WITH CANCER RESEARCH THAT FOLLOWS CONVENTIONAL WISDOM IS THAT THERE’S NOTHING CONVENTIONAL ABOUT CANCER.
