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 or a long-term survivor, check out our Basics section on cancer treatment, how to manage side effects and more. cancerhealth.com/basics
Science News
Learn about the latest treatment and prevention advances, cure research and conference news. cancerhealth.com/science-news
Cancer Health Digital
Scan the QR code (left) with your smartphone to check out the digital issue of Cancer Health online, or go to cancerhealth.com/digital to read past issues and the entire Smart + Strong digital library.
16 MISSION ACCOMPLISHED
Albie Suozzi shares her knowledge about CLL.
Albie Suozzi was determined to learn about her CLL, a blood cancer. A health care specialist helped her do just that.BY JENNIFER COOK
20 THE POWER OF PARTICIPATION
Clinical trials offer access to cutting-edge treatments and the chance to help others while helping yourself.BY LIZ HIGHLEYMAN
4 From the Editor Special Treatment
6 News Federal funding cuts | cellphone radiation | pediatric progress | the new food pyramid | MyGeneRisk
8 Care & Treatment
Cancer survival rates | promising cancer vaccines | EHQHƓWVRI walking and gardening | “time toxicity” of cancer care
10 Voices
Meet Osler, an AI chatbot that can translate medical jargon, interpret pathology reports and more.
13 Basics
Vaccines that reduce cancer risk
14 A Prostate Cancer Diary Bishop Stacey Latimer enrolled in a clinical trial for his Stage IV cancer.
24 Can Heal
Sound therapy with Sandy Duarte
28 Solutions A swell plan to reduce edema
30 Your Team Oncology nurse Jessica MacIntyre
31 Resources Brain cancer info and websites
32 Good Stuff
Indulge in these treatment balms.
33 Reader Survey Complementary therapies
Special Treatment
YOU WANT THE BEST OUTCOME
after your diagnosis—that much is obvious. But what isn’t so clear is the active role you can play in your care. Our spring 2026 issue of Cancer Health highlights ways to get on a treatment path that’s right for you.
When Albie Suozzi, who’s featured on our cover, was diagnosed with chronic lymphocytic leukemia (CLL) in 2008, she had never heard of the blood cancer. Online resources were scarce, and her community-based hematologist couldn’t perform certain critical tests. So she sought out a specialist who conducted the tests and explained the results. She also connected with the CLL Society, a support group. Turn WRSDJHWRƓQGRXWKRZWKLVLQIRUmation gathering enhanced her care.
Many people with cancer enroll in clinical trials to access cutting-edge treatments. Bishop Stacey Latimer did just that after he was diagnosed with metastatic prostate cancer in 2019. For our Cancer Diary on page 14, Latimer shares his experiences. Are clinical trials right for you? In our feature on page 20, science editor Liz Highleyman lays out the types of trials, their different stages and the pros and cons of participating.
Oncology nurses can provide untapped reinforcements. “We’re very UHVRXUFHIXO ZHōUHDEOHWRƓQGZD\VRI supporting our patients,” says Jessica MacIntyre, DNP, MBA, in our Your Team interview. Turn to page 30 to learn what makes these nurses unique.
Nowadays, health specialists aren’t
always human beings. On page 10, medical journalist Howard Wolinsky introduces you to Osler, an AI chatbot on MyPathologyReport.com. Osler can translate medical jargon, interpret pathology reports, suggest follow-up questions for your doctor and more. Many patients complement their treatment with nonmedical therapies. For example, Sandy Duarte, who had Stage IV non-Hodgkin lymphoma, found strength and healing in yoga, journaling and sound bowls. She shares more about aural therapy on page 24. Finally, turn to page 33 for our latest Survey and tell us about your own experiences with complementary and alternative medicine.
Federal funding cuts at NIH impact over 74,000 clinical
trial participants.
In less than six months last year, the Trump administration terminated billions of dollars in grants to the National Institutes of Health (NIH), impacting 1 in 30 clinical trials and over 74,000 people enrolled in the medical studies, including cancer research, according to a report published in JAMA Internal Medicine.
A similar study, also in JAMA, found that 181
individual research grants funded by the National Cancer Institute, part of the NIH, were terminated in early 2025. (The NIH is one of several agencies within the Department of Health and Human Services, which is overseen by Health Secretary Robert F. Kennedy Jr.)
Between the end of February and mid-August WKLVƓUVWURXQGRIFXWVWRWKH1,+GLVUXSWHG 383 studies testing treatments for cancer, heart disease, brain disease and more. In addition, of 11,008 ongoing trials, 3.5% lost funding during this time. Some of these studies had already completed collecting their data. Some have been GHOD\HGLQKRSHVRIƓQGLQJDOWHUQDWHVXSSRUW And yet others were still treating participants when funding ended. Trials that were active when the cuts hit had a total of 74,311 enrolled patients.
“Clinical trials aren’t light switches,” said Céline Gounder, MD, an editor-at-large for public health at KFF Health News and a CBS News medical FRQWULEXWRUŏ<RXFDQōWMXVWŴLSWKHPRIIZLWKRXW consequences. Cutting off funding mid-trial wastes research dollars and puts patients at risk. This is a breach of trust with every person who volunteers for research.”
Is Cellphone Radiation a Danger?
Hold the line: Despite countless published studies and decades of ubiquitous cellphone use, no data currently link cellphone radiation with cancer or other illnesses. In fact, the National Cancer Institute (NCI) states, “The evidence to date suggests that cellphone use does not cause brain or other kinds of cancer in humans.”
Nonetheless, the Department of Health and Human Services (HHS) is launching a study to investigate the potential harm of cellphone radiation at the direction of Health Secretary
Robert F. Kennedy Jr., who, according to NBC, claims there is a link between cellphone use and neurological damage and cancer. At the same time, the Food and Drug Administration, an agency within HHS, has taken down web pages stating that cellphone radiation is not dangerous, according to the Wall Street Journal.
As the NCI points out, confusion and concern probably linger in the public’s imagination because cellphones do in fact emit radiation (in the form of radiofrequency radiation,
or radio waves). But this type of radiation is low energy and low frequency—too low to damage DNA and result in cancer. This contrasts with the high-energy, high-frequency ionizing radiation found in X-rays and radon, which indeed can cause cancer.
PEDIATRIC PROGRESS
“Enormous progress has been made in the treatment of pediatric cancers over the past several decades,” noted the American Association of Cancer Research in its inaugural AACR Pediatric Cancer Progress Report 2025. The most common cancers among children and adolescents are leukemias, brain and central nervous system tumors, lymphomas, thyroid cancer and germ cell tumors. Pediatric cancers are rare, with about 15,000 diagnoses in 2025. Of note, more than 30 new drugs have been approved for pediatric cancer in the past 10 years. The ƓYH\HDUVXUYLYDOUDWHIRUDOOSHGLDWULFFDQFHUV combined has increased from 63% in the mid1970s to 87% during 2015–2021. And pediatric cancer mortality in the United States declined by 57% between 1970 and 2000 and by a further 19% from 2001 to 2023. Challenges include persistent disparities and gaps in knowledge about rare malignancies.
CHEW ON THIS
Assessing the new food pyramid and dietary guidelines
The Trump administration released Dietary Guidelines for Americans, 2025–2030, which the White House bills as a reset that puts real food back at the center of health. The American Institute of Cancer Research assessed the new guidance and found:
• The Guidelines’ emphasis on eating fruits, vegetables, whole grains and plant-based proteins while limiting ultra-processed foods and added sugars closely supports evidence-based cancer prevention strategies.
• The Guidelines’ increased emphasis on red meat consumption and its advice to merely “limit” alcohol consumpWLRQFRQŴLFWZLWK VFLHQWLƓFHYLGHQFH linking red and processed meat and alcohol intake to higher cancer risk. For meaningful cancer prevention, the Guidelines ZRXOGEHQHƓWIURPFOHDUHU prioritization of plant proteins, explicit avoidance of processed meat, recognition that no level of alcohol is safe and policies that improve access, affordability and implementation of healthy dietary patterns.
Learn Your Risk for Colorectal Cancer
Colorectal cancer is on the rise, especially among young adults. Excluding skin cancer, it’s the third most common cancer diagnosis in the states, after prostate (for men), breast (for women) and lung cancers. Thanks to free and anonymous online calculator MyGeneRisk Colon from Fred Hutch Cancer Center, you can estimate your risk. Users upload genetic data from direct-to-consumer DNA testing services and answer questions about lifestyle—such as diet, habits and exercise—and the tool generates a report. Don’t have DNA data? The tool can also calculate your risk using lifestyle factors alone.
GOOD NEWS—MOSTLY— ABOUT CANCER SURVIVAL
More Americans than ever are surviving cancer for ƓYH\HDUVRUPRUHDFFRUGLQJWRDQHZUHSRUWIURP WKH$PHULFDQ&DQFHU6RFLHW\ $&6 7KHƓYH\HDU VXUYLYDOUDWHIRUDOOFDQFHUVFRPELQHGUHDFKHG IRUSHRSOHGLDJQRVHGEHWZHHQDQG &DQFHUPRUWDOLW\KDVIDOOHQE\RYHUDOOVLQFH LWVSHDNLQWKH VŋPHDQLQJPLOOLRQIHZHU GHDWKVŋPDLQO\GXHWRUHGXFHGVPRNLQJHDUOLHU GHWHFWLRQDQGLPSURYHGWUHDWPHQW(YHQIRUPHWD VWDWLFFDQFHUƓYH\HDUVXUYLYDOKDVGRXEOHGIURP WR6XUYLYDOJDLQVDUHHVSHFLDOO\QRWDEOH IRUPRUHIDWDOFDQFHUVVXFKDVOLYHUFDQFHU IURP WR DQGOXQJFDQFHU IURPWR WKRXJK OXQJFDQFHULVVWLOOWKHWRSFDXVHRIFDQFHUGHDWK ŏ7KLVVWXQQLQJYLFWRU\LVODUJHO\WKHUHVXOWRIGH FDGHVRIFDQFHUUHVHDUFKWKDWSURYLGHGFOLQLFLDQVZLWK WKHWRROVWRWUHDWWKHGLVHDVHPRUHHIIHFWLYHO\WXUQLQJ PDQ\FDQFHUVIURPDGHDWKVHQWHQFHLQWRDFKURQLF
LQWLVPHUDQDXWRJHQHDUHSUR GXFHGXVLQJQHRDQWLJHQVRU PXWDWHGSURWHLQVRQFDQFHUFHOOV GHULYHGIURPDSDWLHQWōVWXPRU ELRSV\VDPSOH%XWWKLVSURFHVV LVH[SHQVLYHDQGWLPHFRQVXPLQJ so researchers are also testing RIIWKHVKHOIYDFFLQHVWKDWGRQōW UHTXLUHFXVWRPL]DWLRQ
2QHDSSURDFKWDUJHWV3'/ DQG,'2WZRSURWHLQVWKDWKHOS WXPRUVHYDGHWKHLPPXQHV\V tem. Results from a Phase III trial SUHVHQWHGDWWKH(XURSHDQ6RFLHW\ IRU0HGLFDO2QFRORJ\&RQJUHVV VKRZHGWKDWSDWLHQWVZLWKDG YDQFHGPHODQRPDZKRUHFHLYHG ,2%LRWHFKōV&\OHPELRYDFFLQH
SOXV.H\WUXGDVKRZHGD LPSURYHPHQWLQSURJUHVVLRQIUHH VXUYLYDOFRPSDUHGZLWK.H\WUXGD alone. The combination also VKRZHGSURPLVHIRUQRQVPDOO FHOOOXQJDQGKHDGDQGQHFN cancers in Phase II.
Need help translating medical jargon into plain English? AI chatbot Osler is your guy. And he can do much more— for free!—on MyPathologyReport.com.
WHEN MARTIN UTHE, 67, A REAL ESTATE AGENT FROM CHICAGO, opened his pathology report in a hospital online portal, he was stunned. The report, prepared by a pathologist—a specialist who analyzes blood and tissue samples to determine diagnoses and possible treatments—announced he had “prostatic adenocarcinoma.”
Uthe knew that meant he had the big C, but he couldn’t interpret the rest. He faced an onslaught of other terms that are familiar to doctors but not patients. And he’s not alone. A University of Michigan study showed that only 39% of patients with prostate cancer understood the basics of their pathology reports.
Uthe had undergone a needle biopsy because RIDULVLQJ36$ SURVWDWHVSHFLƓFDQWLJHQ OHYHOD marker for prostate cancer. His report said he had a tumor stage of “at least pT1cNxMx,” a Gleason score of 4+3 and a Grade Group of 3. It added that the cores—slices of prostate tissue examined by the pathologist—showed no signs of perineural, lymphovascular or extraprostatic invasion.
The pathologist chatbot is named for Canadian internist Sir William Osler, known for his patient-friendly approach.
Say what? It was gobbledygook to Uthe. The report might as well have been in Sanskrit or Klingon.
Was this good news, or did he have to get his affairs in order?
Uthe brought his story to a virtual support group I cofounded seven years ago through AnCan, a peer-to-peer support organization formerly known as Answer Cancer. This particular group focuses on active
surveillance, an approach to managing low-risk prostate cancer with close monitoring as a way to avoid surgery or radiation and their side effects, such as erectile dysfunction and incontinence.
I sat up straight when I heard Uthe had Gleason 4+3, a form of prostate cancer that typically is treated aggressively (Gleason scores range from 2 to 10; numbers adding to 6 and above LQGLFDWHFDQFHU 8WKHGLGQōWJHW into the weeds of his pathology report. Most men who attend the support group have lowrisk cancers.
I met with him one-on-one via Zoom a few days later. I told him he was unlikely to go on active surveillance—but it was possible— and that, above all, he needed a second opinion. Jonathan Epstein, MD, the dean of second opinions for prostate cancer and a uropathology specialist, has told me he ends up changing the Gleason score and related Grade Group (measures of how DJJUHVVLYHWKHFDQFHULV LQDERXW 20% of cases he reviews.
In this case, Uthe allowed me to try something new. I shared his pathology report—not his name— with MyPathologyReport.com, a website that offers a dictionary, searchable resources and a Pathology 101 step-by-step guide to help patients understand their reports. The site also has expert pathologists who translate pathology reports into plain English. 7KHVLWHLVDUHJLVWHUHGQRQSURƓW and its services are free.
Since November, the site has featured an AI chatbot pathologist named Osler after the Canadian
internist Sir William Osler, known for his patient-friendly approach.
Trained on the site’s archives, Osler has been so accurate that Jason Wasserman, MD, a pathologist based in Ottawa who founded the site in 2018 after his father-in-law couldn’t decipher a pathology report, now urges SDWLHQWVWRƓUVWWU\2VOHUEHIRUH following up with a live pathologist. Wasserman specializes in head and neck cancer at The Ottawa Hospital and has a team of expert pathologists in other areas to back him up.
MyPathologyReport covers a wide range of diseases, with an emphasis on cancers and precancers, including breast, gastrointestinal, gynecologic, skin, blood and lymphoid diseases.
DECODING A PATHOLOGY REPORT, LINE BY LINE
When I pasted Uthe’s report into Osler, it responded like a thoughtful support-group moderator.
The AI report delivered some good news about the biopsy sample: There were no signs of the cancer growing into nearby nerves or blood/lymph vessels, and no cancer was seen extending outside the prostate. He would need further tests to FRQƓUPWKDW2VOHUDOVRGHOLYered the bad news: His cancer was a potentially more aggressive Gleason 4, Grade Group 3. What’s more, Osler explained that the pT1cNxMx shorthand meant Uthe’s tumor was not felt on a physical exam and was found through a needle biopsy, and there was no information yet on lymph node involvement
or distant metastases.
Osler put the results in context. It explained that 4+3 cancers are considered intermediate risk and routinely lead to treatment discussions, noting that decisions depend on more than the Gleason score alone. PSA level and density, 05,ƓQGLQJVFOLQLFDOVWDJHDJH and overall health all matter. It said that active surveillance might still be possible but that he needed to consult with a urologist.
Osler offered a list of questions for Uthe’s urologist:
• Is active surveillance still possible?
• Should he repeat the MRI or the biopsy?
• Are there genomic tests WKDWFRXOGUHƓQHKLVULVN"
Osler also echoed my message: Get a second opinion on the pathology from a highly experienced uropathologist. There was a chance Uthe’s Gleason score could be downgraded; I’ve seen that regularly.
Gleason grading, it noted, can be subjective—especially in the 3+4 versus 4+3 range. Rather than burying him in statistics, Osler suggested that Uthe ask his XURORJLVWKRZRIWHQUHFODVVLƓFDtion changes outcomes in cases OLNHKLVDQGZKDWDUHFODVVLƓFDWLRQ might mean for treatment choice.
I shared the report with a consulting pathologist from MyPathologyReport’s Ask a Pathologist service—usually, it’s Wasserman. This person conƓUPHG2VOHUōV ƓQGLQJVDQG shared a glossary of terms related to Uthe’s diagnosis.
Martin Uthe sought AI and human experts to navigate his cancer.
The pathologist also answered a question that was weighing on Uthe’s mind: Can someone with Gleason 4+3 go on active surveillance?
“It depends on several factors. Active surveillance is most clearly used for very low-risk FDQFHU *OHDVRQRU DQG for some very favorable, lowvolume cases of Gleason 7,” the pathologist wrote.
“A 4+3 pattern is considered more aggressive than 3+4,” the pathologist continued, “so many clinicians would not offer active surveillance as the default option for a Gleason 4+3. However, if the disease is truly ORZYROXPH DVLQWKLVFDVH DQG other factors are very favorable, some doctors may consider close monitoring with frequent PSA tests, examinations and periodic reevaluation with imaging or repeat biopsy. The decision depends on your age, overall health, PSA level and 36$GHQVLW\05,ƓQGLQJVWKH
number of positive cores, how much of each core is involved and whether there are features like perineural invasion.”
Later, Dr. Epstein reviewed Uthe’s case. He found Uthe had low-volume Gleason 4+3, that the original pathology report had missed a second low-volume Gleason 4+3 cancer and that Uthe was not a candidate for active surveillance. He recommended that Uthe consult a radiation oncologist. Uthe’s urologic oncologist, Abhinav Sidana, MD, MPH, of the University of Chicago, suggests that Uthe go slow and undergo follow-up testing before plunging into treatment. Emergencies are rare in prostate cancer.
Uthe said he had already experimented with using popular general-purpose AI to better understand his pathology reports. Osler, he said, “felt more tailored to the questions asked than regular AI, though general AI was good for comparing treatments and side effects.”
BRIDGING THE GAP BETWEEN ACCESS AND UNDERSTANDING
Behind Osler lies a distinctly Oslerian ecosystem focused on patient education, says Wasserman. MyPathologyReport hosts about 500 diagnostic articles and 400 glossary entries explaining pathology terms in plain language. Pathologists write the content, and patient advocates review it for clarity. Its Ask a Pathologist service lets patients pose questions—like
OSLER CAN SUGGEST FOLLOW-UP QUESTIONS.
“My bladder cytology shows cytologic atypia; what does that mean?”—and receive detailed expert answers with links to relevant articles. Many questions involve breast, colon and prostate disease; others concern EHQLJQƓQGLQJVZLWKDODUPLQJ names. “Normal antral and body-type gastric mucosa with mild regenerative changes” sounds dire until explained as, essentially: “Your stomach looks normal.”
The website also patches a gap that contemporary law has inadvertently created. U.S. regulations now give patients immediate electronic access to test results—often before their clinician contacts them. Many patients appreciate transparency, but in practice, as my support-group experience suggests, dense language about glands, margins and mitoses can provoke fear.
The MyPathologyReport site offers a reference library to decode terminology and provide expert interpretation. Osler goes further by analyzing whole reports and explaining their meaning. It decodes what a pathology report means, FODULƓHVJHQHUDOTXHULHVDQG helps patients prepare focused questions for their care team.
REVIVING OSLER’S WISDOM FOR THE DIGITAL AGE
Sir William Osler worked in an era of bedside rounds and handwritten notes. His enduring advice—to treat the patient, not the disease— has become medical lore. Witnessing a chatbot bearing his name translate a dense prostate pathology report for a frightened patient puts a new spin on the Oslerian ideal of being informative and patient-friendly.
To paraphrase the master: “A good website explains disease. A great one helps the person living with it.” Increasingly, technology like Osler does both, helping patients walk into the clinic informed, calmer and ready to ask the right questions.
As for Uthe, he was impressed with Osler and the discussion it sparked. But he still plans to rely on the sharpest diagnostician in his house, his wife, who accompanies him to all his visits. “Karen’s questions are better,” he said. “She really zeroes in on things.” Q
Howard Wolinsky is a Chicagobased medical journalist and has been on active surveillance for prostate cancer for 15 years. He founded several support groups on active surveillance for men, including groups via AnCan.com and Active Surveillance Patients International (AsPatients.org). He ghostwrote a book on the future of pathology for the College of American Pathologists. In 2025, the Cancer Health 25 honored him as a top patient advocate.
Vaccines Can Prevent Cancer
Getting vaccinated against HPV and hepatitis B is an easy way to reduce cancer risk.
RESEARCHERS ARE WORKING
to develop therapeutic vaccines to treat cancer, but preventive vaccines can already lower the risk of some malignancies.
HUMAN PAPILLOMAVIRUS
Human papillomavirus (HPV) causes abnormal cell changes that can progress to cervical, anal, genital and oral cancers. HPV is the most common sexually transmitted infection, and most people acquire one or more of the 200-plus types soon after they become sexually active.
The Gardasil 9 vaccine protects against nine types of HPV that cause cancer or anal-genital warts. HPV vaccines are safe and effective, reducing infection and preventing precancerous cell changes. Widespread vaccination is already on track to eliminate cervical cancer in some countries.
The Centers for Disease Control and Prevention (CDC) recommends HPV vaccination for boys and girls at ages 11 or 12, with catch-up vaccines for those up to age 26. The CDC previously recommended two doses for those younger than 15 and three doses for older people. This year, however, the agency changed its recommendation to a single dose for adolescents, after studies showed that one dose works as well as two.
Although Gardasil 9 is approved for people up to age 45, it does not work as well for older
individuals who have already been exposed to HPV. People ages 27 to 45 can talk with their health care provider about whether vaccination still makes sense for them.
HEPATITIS B
Chronic hepatitis B can lead to complications, including cirrhosis and liver cancer. Hepatitis B virus (HBV) spreads via objects that come in contact with blood— such as needles for injecting drugs or shared household items—and it can be transmitted during sex and from a pregnant woman to her baby.
Hepatitis B vaccines are safe and effective. Since 2022, the CDC has recommended routine vaccination for all children, adolescents and adults up to age 59. Vaccinating infants immediately after birth prevents chronic HBV infection, and giving a birth dose to all babies has decreased hepatitis B among children and adolescents in the United States by around 95%. However, the CDC recently stopped recommending the birth dose for all infants, leaving it optional for those born to women who test negative for HBV. This change is controversial, and many doctors still advise it for all babies.
OTHER PATHOGENS
Like HBV, hepatitis C virus (HCV) causes cirrhosis and liver cancer.
There is no vaccine for HCV, but a two- to three-month course of direct-acting antiviral therapy can cure more than 90% of chronic hepatitis C cases. Epstein-Barr virus (EBV), a member of the herpesvirus family, increases the risk for stomach cancer, nasopharyngeal cancer and some types of lymphoma. Kaposi sarcoma–associated herpesvirus (also known as HHV-8) causes a malignancy that mainly affects people with compromised immunity, such as those with untreated HIV. Helicobacter pylori is a type of bacteria that causes stomach cancer. There are no approved vaccines for these pathogens, but research is underway.
Along with smoking cessation, eating a balanced diet, getting enough exercise and maintaining an overall healthy lifestyle, vaccination is one of the best ways to protect yourself and your children against cancer. Q
A Prostate Cancer Diary
Bishop Stacey Latimer, 63, was diagnosed with metastatic prostate cancer in 2019. He enrolled in a clinical trial and is still going strong.
GROWING UP IN RURAL LAURENS, SOUTH
Carolina, I loved church. But I knew I was different, attracted to boys. In college, I tried to commit suicide. In 1985, I joined the Army and tried not to be gay. But I also felt liberated when I met other men trying to understand their sexuality. In 1987, I tested positive for HIV. I’ve been on antiretroviral treatment since the mid-’90s and never developed AIDS.
$WƓUVW,WKRXJKW,ZDVJRLQJWRGLH,KDGRQHRI my talks with God and said, “If You get me through this, I want to be part of helping.” I worked on HIV outreach. I moved to Brooklyn and in 2005 became DPLQLVWHUZLWKWKHJD\DIƓUPLQJ8QLW\)HOORZVKLS Church. In 2009, I founded the Love Alive International Sanctuary of Praise in Manhattan, a ministry that welcomes everyone. I became an auxiliary bishop in 2019 and will be an ordinary bishop in 2026. I continue to share my HIV story, including in POZ magazine [Cancer Health’s sister publication].
2015–2016
I started having urinary problems. My doctor thought it was an enlarged prostate and put me on medicine. But I think the cancer may have been happening.
Summer 2017
I started having this feeling like someone was runQLQJƓQJHUVDORQJVLGHP\EDFN,ZHQWWRWKHGRFWRU DERXWLW7KH\WRRN;UD\VFRXOGQōWƓQGDQ\WKLQJ
February 2019
Every now and then, I had this feeling like something was pulling, expanding and contracting in my back. My doctor said we needed to do an MRI. Well, I had had a bad experience with an MRI in the past. I had convulsions due to an allergy to the dye. I went in for the MRI, but there was a delay, and the fear kicked in. I told them to reschedule. In the meantime, they sent me to a urologist.
March 2019
I was with my urologist for less than 10 minutes when he said, “I think this is cancer.” He referred me to an oncologist at the Brookly VA Medical &HQWHU)LUVWWKRXJK I went to Walter Reed [National Military Medical Center] for a second opinion. They thought it was cancer too.
So I went to the VA in Brooklyn. They did the MRI. They told me, “Mr. Latimer, it’s everywhere—in your bones. You have 11 tumors. Stage IV.” But they also said, “It’s not in any of your organs, and we’re going to try to keep it that way.”
,ZHQWKRPHORRNLQJRQWKHLQWHUQHWWRƓQG KRSHEXW,FRXOGQōWƓQGDQ\ERG\ZLWK6WDJH,9 OLYLQJSDVWƓYH\HDUV,WZDVWKHVHFRQGWLPH, was facing death. In 1987, I was told I’d have six months to live with HIV. But God has been gracious. I had just put a down payment on a dog: a cane corso, an Italian mastiff. I told my doctor I didn’t want to get the dog and have him end up an orphan. He said, “Get your dog—my patients do better when they have pets.” It’s been the best thing.
Even though my cancer was progressive, my doctor wanted to take it a day at a time. I trusted my doctor. He was a man of faith as well. We didn’t start treatment for more than a year.
May 2019
They radiated my chest. It wasn’t about the cancer. They told me that I would start on hormone therapy, and I could develop breasts, and this makes sure Latimer at a clinical trial and in POZ magazine
WKDWGRHVQōWKDSSHQ7KHƓUVWGD\ZDV2.EXWE\ the third, I couldn’t even swallow my own spit. I can’t even imagine how people do radiation and chemo at the same time.
June 2019
There was one area on my spine they were concerned about, so they did some radiation on it too.
August 2019
My oncologist told me I should be in pain and that they have lots of ways to help. I said I wasn’t in pain, just very uncomfortable, sometimes trouble bending down and then getting back up. But I know I have God living in me. I can do this.
July 2020
They were doing regular blood monitoring, including 36$>SURVWDWHVSHFLƓFDQWLJHQ@OHYHOVDQGƓQDOO\ my oncologist said, “It’s time that we begin treatPHQWŐ,VWDUWHGRQKRUPRQHWKHUDS\ƓUVW
August 2020
We started chemotherapy—intravenously every three weeks. I had nausea, throwing up, fatigue. It messed with my hearing—I wear hearing aids now. Thank goodness for my dog. Without him, I wouldn’t have done the walking that I did—and do. I did this for nearly two years, plus I stayed on hormone therapy and had intravenous medicine to strengthen my bones. It was a struggle. But it brought an awareness to me: I ain’t ready to die.
February 2022
The chemo stopped working. My PSA numbers went up. They started me on a different chemo, a pill, but I just didn’t feel like myself. I told them, “I’m not going to take it anymore.” My doctor said, “We have nothing else for you, but I’ll start looking.” Seeing this as a possible end, I decided to marry my best friend, who had moved in with me when I started chemo. He’s been wonderful, along with my bishop, who encouraged me not to give up.
January 2024
We got married down at City Hall. My doctor told PHDERXWDWULDODW0HPRULDO6ORDQ.HWWHULQJ&DQFHU
Center. It was for a targeted radiopharmaceutical treatment—a drug and radiation—which has since been approved. But then another trial combined it with an investigational drug, ONC-392, a checkpoint inhibitor that binds to a protein on immune cells inside the tumor. I said, “I want to try that trial.”
February 2024
We started the combo. By then, my PSA was 95. Two weeks later, my numbers started going down. I was supposed to do 13 of these combination sessions over the course of a year. Sometimes, I would take them together, then at different times, then together again.
November 2024
$IWHUWKHƓUVWVL[VHVVLRQVP\KHPRJORELQOHYHOV started to go down. We stopped after the 11th session. My doctor told me that we needed to preserve my bone marrow, so we skipped the last two doses of the radiation drug but kept on with the experimental drug. It’s been pretty easy. I had VLGHHIIHFWVWKHPRUQLQJDIWHU,ƓUVWWRRNERWK drugs together but very little after that.
March 2025
,ƓQLVKHGWUHDWPHQW0\GRFWRUVVDLGŏ0U/DWLPHU it’s just amazing. Even though you stopped [one of the meds], your numbers are still going down.” I started going in every 12 weeks for blood work and bone scans for research purposes.
January 2026
My PSA numbers keep going down. It’s now 0.24. They were amazed that the treatment didn’t destroy my T cells. That clinical trial was my miracle that I prayed for.
I believe that my life is unfolding as it’s supposed to. My mission is not done. Part of that mission is to inform people about cancer. You know, cancer is prevalent in the HIV community.
Do I have issues? Let me tell you: Today, at some point, there’s going to be a twitch, an ache or a shooting pain to remind me where I am with this GLVHDVH%XW,ōP2.*RGKDVJLYHQPHHQRXJK time. Life ain’t gonna last forever. So you might as well get ready. Stop procrastinating. Enjoy life. )RUPRUHƓUVWSHUVRQHVVD\VJRWR
Albie Suozzi was determined to learn about her CLL, a blood cancer, so she found a health care specialist to help her do just that.
BY JENNIFER COOK • PHOTOGRAPHY BY LUKE COPPING
2008 IS A YEAR ALBIE SUOZZI, 66, WILL NEVER FORGET. IT WAS the year her only son died in a motorcycle accident. Two weeks after that tragedy, she was diagnosed with chronic lymphocytic leukemia (CLL), the most common type of adult leukemia—accounting for 22% to 30% of cases—though it’s still considered a rare disease.
e diagnosis seemed almost incidental, Suozzi says. “I had no symptoms, nothing. It was just out of the blue.” Her job required employees to get a physical exam along with blood tests every year. In 2006, the testing revealed a too-high white blood cell count. When that test was repeated in 2007, with the same results, Suozzi was advised to see a hematologist, but she put it off until 2008. Once diagnosed, she knew she had leukemia, but she had never heard of the specific type. She made it her mission to find out what she had and how to deal with it. As an educator—at one point, she was superintendent of a school district—she felt the more she could learn, the more she could be in control and better understand her disease. For her, that meant having a partnership with a doctor and conversations that made sense to both of them. But at the time, nearly 20 years ago, “there was nothing, I mean
nothing, for support,” Suozzi says. “ ere were no support groups and very few reliable resources. So I did as much research as I possibly could with what good resources were out there to teach myself about the disease.”
WATCH AND WAIT
Suozzi was placed on an active surveillance—also referred to as “watch and wait”—protocol involving blood tests every three or four months to monitor factors like her white blood cells and her absolute lymphocyte count, which gives a more precise picture of immune system status. e intervals between tests were increased when her lymphocyte count didn’t double.
It was a very stressful period, “because you always feel like you’re waiting for that
Albie Suozzi started a support group for the CLL Society.
shoe to drop—you know, as to what’s going to happen,” Suozzi says. e lack of treatments was also scary. BTK inhibitors, which have since transformed treatment, didn’t yet exist. “ ere was only chemoimmunotherapy, and not everybody responded to that,” she says. And there were gaps in the information she could piece together because her community-based hematologist couldn’t do certain critical tests that would reveal Suozzi’s degree of risk—low, medium or high—for aggressive disease.
ings changed in 2016 when her hematologist left to take another job. Suozzi had learned about FISH (fluorescence in situ hybridization) testing, a form of genetic testing to diagnose diseases caused by chromosomal differences. It was key to the information that was missing in her understanding of CLL. But the new hematologist she met with told Suozzi that they didn’t do FISH testing. So she investigated specialists in the BuffaloRochester, New York, area, where she lives, and subsequently switched to one at the Wilmot Cancer Institute at the University of Rochester. “I had all the tests done, and when they came back, he spent over an hour and a half with me explaining them,” she says. It turns out she has only one genomic marker and no aggressive ones, which means she has a low-risk, slow-growing form of the disease. “I felt so much better,” she says, both because of her lowrisk status and also for finally having the information she’d been seeking.
more careful about the amount of red meat she consumes. Instead of snacking on a candy bar, she enjoys an apple or other piece of fruit. As an educational administrator, she found she was sitting more than she had when teaching. So she upped her exercise too, walking three or four miles a day. “It gave me more energy, and it still does,” she says. She found it helped with her fatigue, steadied her heartbeat, made her stronger and increased her ability to move faster and farther. Her husband or sometimes their dog accompanies her on these walks.
“ ey were simple changes,” she says of her efforts. “ ey weren’t anything drastic. But it made a difference in how I felt about myself and raised my self-esteem.”
YOU CAN LIVE WITH CLL A LONG TIME. YOU CAN SEE YOUR GRANDKIDS GROW
UP.
Suozzi’s diet tweaks are also fueled by her home’s location in Medina, New York, near Lake Ontario, in what’s known as the Fruit Belt. “You name a fruit, we’ve got it,” she says. “Peaches, pears, cherries, berries. And it all grows beautifully.” In their 22 raised beds, she and her husband can grow a lot of produce, including tomatoes, peppers, sweet corn and squash. When they harvest everything, she freezes, dehydrates or cans it all, and they use it up over the following winter and spring each year. Now retired, she also volunteers to teach canning and preserving at the local cooperative extension, having earned her master food preserver certificate.
STARTING ON MEDS
DIET AND EXERCISE MAKEOVERS
Even before she knew her degree of risk, Suozzi decided she needed to alter her diet. “What made me look at it and decide to make some changes was the fact that all of a sudden, I was a cancer patient, I had CLL and I had no idea how I got it,” she says. “My diet was never horrible, but did I like fried Buffalo chicken salads and fried this or that? Sure, I did!”
Suozzi cut out fast food, added a greater variety of vegetables and more fruits, opted for olive oil and vinegar salad dressings instead of creamy ones and started to be
In 2023, after 15 years of active surveillance, Suozzi’s CLL started causing symptoms. Her spleen, usually the size of a fist, had extended all the way down her side to her navel, and she could feel it extending when she stretched in the morning. ere were other signs too, including declining red blood cell, hemoglobin and platelet counts.
“Usually, there’s no discussion of options, but there should be some kind of shared decision-making between a doctor and a patient,” she says. She was pleased that her hematologist said, “Well, what do you want to do?” She had researched available medicines and decided that she wanted to try a specific second-generation BTK inhibitor. She chose not to participate in a trial, saying, “I want to
do [the targeted BTK inhibitor] because I want to be able to go home and pop a pill twice a day until it stops working.”
Not unexpectedly, Suozzi experienced side effects within two to three days of starting the drug. She had migraine-like headaches, which she countered with caffeinated coffee. Her platelets kept dropping, and she became more anemic, which made her blood pressure drop. Her liver enzymes spiked, and her neutrophils plummeted to near zero. But there were positive signs too: Her spleen and lymph nodes were shrinking. Her doctor took her off the drug for a week and then put her back on a once-a-day dose, which reversed some of the side effects. After two weeks, he put her back on the two-dose regimen, and she’s been fine ever since.
“Everything I experienced is pretty much a normal reaction to the drug,” Suozzi says. “Some people don’t get side effects at all. Others get the side effects I had. So it’s just a matter of managing the medication so your body will get used to it.”
WORKING FOR THE CLL SOCIETY
In 2018, Suozzi started a support group in Rochester for the CLL Society. She and a co-facilitator trained for a couple of days, located a building where they could gather and signed up a group of about 50 people for monthly meetings. COVID-19 forced the meetings to become virtual, which has allowed people from farther afield to attend; in-person meetings have yet to resume. Suozzi also created a one-to-one peer support program for the CLL Society, which she found especially rewarding. “Every time I got off the phone, I would feel good about being able to give back to somebody else,” she says. “I could give back that confidence that you can live with CLL a long time, you can see your grandkids grow up or whatever the case may be…. It was those one-on-one exchanges that I had with people that made a huge difference in my life.
ey’d always thank me, ‘Oh, it’s so great to have this conversation.’ But they didn’t realize what they did for me.”
Suozzi has also been a patient advocate for pharmaceutical companies and educational organizations, helping address how they might make a drug trial better for patients, improve drugs and discuss that with patients, find out what patients think about CAR-T therapy or help doctors understand the patient’s real-life experience when they’re on a medication.
THE ROLE OF HOPE
“Science and research have come a long way,” Suozzi says. “ ere’s a lot going on now even with different cancers, things like cancer vaccines, things that are starting to go to trial.” She encourages people to sign up for a trial that’s available and looks good. “You’re not a guinea pig by any means. A lot of times these trials are to your benefit.
“You gotta have hope; you gotta have faith. As I said, science has come so far since 2008, when I was diagnosed—it’s amazing. ere is hope out there.” Q
THE IMPORTANCE OF A SPECIALIST
Depending on where you live, you may only have access to a communitybased hematologist who deals with many different types of cancer. But a specialist may be able to offer you better care. Here’s what to know when making a decision about your medical team.
• You may live longer. A 2025 study published in the journal Hematology found that among 6,372 CLL patients, those who saw a specialist in an academic setting tended to live longer than those who saw communitybased hematologists, even though those patients had factors that could have led to a less favorable prognosis.
• You’ll have greater access to clinical trials. The same study also found that CLL patients who saw specialists in academic settings had higher participation in clinical trials. Trials can provide access to cutting-edge treatments.
• You may need to travel to see a specialist. If there is no academic medical center near your home, you may be able to travel to one, see a specialist and have your community-based hematologist coordinate with that specialist on your care.
• CLLSociety.org features a list of specialists. Under the “Info & Mgmt” drop-down menu, select “Newly Diagnosed” and then “CLL Doctor List.” There, you’ll ƓQGWKH&//+HDOWKFDUH3URYLGHUV Directory organized by state, with links to each doctor’s instiWXWLRQDOSURƓOH
Clinical trials offer access to cutting-edge treatment and the opportunity to help others while helping yourself.
BY LIZ HIGHLEYMAN
THE REMARKABLE ADVANCES IN CANCER CARE AND TREATMENT
are largely attributable to the countless patients who have chosen to take part in clinical trials over the years. Participating in studies can be a good way to gain early access to the newest therapies, contribute to science and help other people living with cancer. But it’s important to weigh the pros and cons.
Despite the bene ts, less than 10% of adult cancer patients in the United States participate in treatment trials, and groups such as Black and Latino people, those with lower incomes and rural residents are underrepresented.
“How precise can medicine be when the data showing whether a drug works or not excludes entire populations?” asked Yehoda Martei, MD, a medical oncologist at the University of Pennsylvania, in a recent STAT opinion piece. “Our failure to enroll truly representative populations in clinical trials not only harms patients, it threatens the foundations of innovation and undermines the promise of personalized medicine.”
e most familiar clinical trials assess the safety and e ectiveness of new therapies in a formalized, stepwise manner (see “Clinical Trial Stages,” page 22). e process of developing new medications is lengthy and expensive,
and only a small fraction ever make it from the laboratory to pharmacy shelves. Many drug candidates that show promising activity in a test tube or a mouse don’t end up working in humans—but the only way to know is to try.
e gold standard for testing new therapies is the doubleblind randomized controlled trial. Randomization means participants could be randomly assigned to any of the study groups, or arms. A controlled trial means patients receive either the experimental therapy or a comparison intervention—for example, an existing standard-of-care treatment or an inactive placebo. Double-blind means neither the researchers nor the participants know who is in which group.
is is all done to reduce bias. Randomization aims to make sure the study groups are as similar as possible—for example, including people of the same ages and disease
severity. Using a control intervention gives a better idea of the real effect of an experimental therapy, since some people will naturally improve, worsen or stay the same even without treatment. Blinding minimizes the influence of expectations on the part of researchers and patients—including the wellknown placebo effect.
Trial endpoints are prespecified, measurable outcomes used to determine whether a new therapy is effective. anks to the efforts of advocates in the early years of the AIDS epidemic, the Food and Drug Administration (FDA) introduced new pathways to speed up access to promising treatments. e FDA can grant accelerated approval based on surrogate markers deemed likely to predict clinical outcomes, such as overall response rate (tumor regression) or progression-free survival (time to disease worsening), rather than waiting for patients to die. But such therapies are expected to undergo further testing to confirm their clinical benefit—most important, overall survival—and the agency can rescind approval if they fail to measure up.
Other types of trials evaluate new diagnostic methods and treatment strategies for different patient populations. Prevention trials look at screening methods or biomedical interventions to halt the development of cancer or reduce the risk of disease progression or recurrence. Sometimes—as with therapeutic cancer vaccines—the distinction between prevention and treatment can be blurry. Some trials aim to help patients manage symptoms or side effects, improve
their quality of life or optimize their health, such as studies of exercise regimens, nutrition and complementary therapies.
For ethical or practical reasons, some studies can’t use randomization, controls or blinding. Observational studies, which don’t randomly assign interventions but instead follow patients to see what happens over time, can also yield valuable information.
TRIAL BARRIERS
A good study design is essential to ensure that research yields reliable and relevant data. In particular, trials should enroll enough people and last long enough to produce statistically significant results, meaning the findings are unlikely to be due to chance alone.
It’s also important to enroll participants who reflect the population that will use a new intervention in the real world, including people of both sexes, a range of ages, all racial and ethnic groups and those with coexisting health problems. But the status quo is falling short.
An analysis by the Commission on Cancer and the American Cancer Society Cancer Action Network found that only 7% of patients participated in cancer treatment trials. e enrollment rate rose to 22% at National Cancer Institute–designated comprehensive cancer centers but fell to just 4% at community cancer centers. is is a concern, as around 80% of cancer patients in the United States are diagnosed and treated in community settings.
Lack of awareness is one challenge. Some people don’t under-
stand the clinical trial process or may not know how to find relevant studies—and all too often, care providers fail to inform them. One small study that asked women with breast cancer why they declined to participate in trials found that the three main reasons were fear of clinical trials, mistrust of the medical establishment and logistical barriers.
ose barriers include financial considerations. While the experimental therapies tested in clinical trials are free, associated costs can add up.
research could make matters worse (see News, page 6). Federally funded research fills essential gaps not covered by pharmaceutical companies, including basic science, earlyphase trials and studies of rare and childhood cancers.
JOINING A TRIAL
Weichuan Dong, PhD, of Houston Methodist, and colleagues reviewed electronic medical records from more than 12,000 adult cancer patients in Ohio; only about 5% enrolled in treatment clinical trials. Using a machine learning algorithm to analyze over 400 variables, they found that financial factors, such as income and homeownership—rather than demographics—were the strongest predictors of trial participation.
“Clinical trials save lives, but financial barriers prevent too many patients from participating,” Dong says. “Addressing the real-world costs patients face, like transportation, child care and lost wages, can make trials more equitable and ensure advances in cancer care benefit everyone.”
TRIAL PROS AND CONS
PROS
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Whether to take part in a clinical trial is an important decision in your cancer journey. Trial participation can offer many benefits, including early access to promising new therapies and care provided by leading experts (see “Trial Pros and Cons,” below). But there are also potential drawbacks. ese include timeconsuming study visits, frequent blood draws and scans, the risk of side effects and the need to forgo other therapies. And remember, in a randomized trial, you might not be assigned to the experimental treatment.
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Many other studies, however, have found that race and ethnicity matter, with Black people being especially underrepresented. In one recent Phase III trial that led to the approval of a new drug for breast cancer, only 0.6% of participants were Black, even though Black women are 40% more likely than white women to die of breast cancer.
“When the trial participants do not reflect the diverse populations in the real world, the evidence that informs universally adopted cancer treatment guidelines is incomplete,” Martei wrote. “ is exclusion is not just a moral failure—it is a scientific one.”
But expanding trial access and representation requires resources, and recent federal funding cuts for cancer
If you’re thinking about joining a trial, your cancer care team, support groups and advocacy organizations can be good sources of information about available studies. e National Institutes of Health’s ClinicalTrials.gov website lists open studies for all conditions, including cancer.
When considering a trial, learn all you can about the treatment or other intervention being tested, what other options are available and the potential risks and benefits. Find out the frequency of study visits, the types of testing and monitoring that will be done and whether the trial provides reimbursement for travel and other expenses. Don’t be afraid to ask questions! Before agreeing to join a trial, participants must sign an informed consent document, but this is not a contract—you have the right to withdraw at any time for any reason.
Clinical trials of new cancer therapies can’t offer guarantees. Researchers don’t yet know how effective an experimental intervention will be, and they can’t rule out unforeseen adverse events. But despite this uncertainty, trials can be a gateway to better treatment for yourself and other people facing cancer now and in the future. Q
Sound, Body and Mind
Creative and healing artist Sandy Duarte shares how sound bowls, yoga, journaling and meditation complement her medical treatment for Stage IV non-Hodgkin lymphoma.
IT STARTED WITH A BAD COLD and a cough that wouldn’t go away. At first, Sandy Duarte, an actress, author and yoga instructor in Los Angeles, didn’t think much of it. After all, the Canadian transplant had been traveling back and forth beWZHHQKRPHEDVHVDQGƓJXUHG the change in climate was partially to blame. But the usual balms and antibiotics didn’t help. By February 2024, she was so weak she couldn’t practice yoga. “I thought, Something’s wrong with my lungs, something really bad.” She decided to pay out of pocket for MRI scans. “When I got the call, I knew it wasn’t good. She said, ‘You have to go to the hospital right now. We’re seeing a big mass.’” Naive,
or in denial about the prognosis, VKHGHFLGHGWRƓUVWWHDFKD scheduled yoga class. “I was being very ignorant,” she reŴHFWVŏ,QKLQGVLJKW,ōYHOHDUQHG to be a better friend to my body. We must listen to what our bodies tell us!” She then asked a bestie to meet her at Olive View–UCLA Medical Center. “I thought I was going in and out,” Duarte recalls. Instead, a series of tests revealed Stage IV nonHodgkin lymphoma; she had a tumor so large it had collapsed her left lung. That was in March. “They said, ‘You need aggresVLYHFKHPR ƓYHGD\VDQGƓYH nights in the hospital, then home two days to recover, then EDFNIRUƓYHGD\Vō,WZDVOLNHWKDW till August.” Since completing
her treatment, Duarte undergoes regular scans and remains in remission.
Duarte at Auratherapy in Miami
A self-described “creative and healing artist,” Duarte was already informed about complementary therapies before her diagnosis. During treatment, she leaned on those modalities and learned new ones. “Cancer is like the ultimate vacation and school— if you choose to look at it that way. You get a lot of time off. You get to face some of the darkest, scariest stuff. But out of cancer, I was birthed two things: my book and my sound.”
To learn more, we spoke with Duarte for the latest installment of our Can Heal column—that
empowering phrase is right there in our title, Cancer Health. These interviews offer a chance to learn about the nonmedical practices that folks with cancer sometimes lean on. Our discussion has been edited for length and clarity.
Do you get scanxiety?
No. I know it’s a real thing, because you do wonder [about the results], but I go in with excitement because the scan shows everything. It’s an opportunity WRƓQGDQ\WKLQJ
Did your previous experience in the health space—yoga and meditation, for example—help prepare you for cancer?
I always cared for my body. I was teaching yoga, and I had been going to one of my favorite places to meditate for years. I’m very grateful I had that because this cancer journey tested every inch of me. There was the physical challenge, but the mental part was the scariest.
When they gave me the diagnosis, I allowed myself about a day or two to live in and truly wonder about the whys. My mom and the nurses would say, “But you teach yoga!” As if yoga teachers don’t get sick. Finally, I told everybody, “Don’t ever ask my why again. I’m not even
going to ask why anymore.” There’s no progress in “why.” You get stuck. Instead, ask yourself, “How?” How am I going to jump forward? How do I become a champion in this? How do I support my body through this with my mind and heart and faith? That mindset was key. That, for me, was a turning point.
You journaled during your treatment and published the bite-size entries as Cancer Ramblings. Did you always write?
I love journaling but never practiced it professionally. Writing is a great support system and way to get out of the mental fog and noise and get closer to the light. It started with a title, Cancer Ramblings. It was the divine saying, “Here’s your permission to be a mess.” The writing helped me, but I knew it could help others. I thought, If I’m a pretty strong and positive person, and I’m getting kicked in the ass, then what about the others? I wanted them to have a raft. My oncology team would see me writing in the middle of the night. I’d say to them, “If I can’t make sense of the nonsense that is cancer, then why this experience?” We have to ƓQGVRPHZD\WRPDNHEHDXWLIXO
things in this world. That way, the ugly stuff that appears is not really ugly. There is beauty trying to meet you that is greater than you know. I say this not as toxic positivity.
Tell us about sound bowls and aural therapy. With cancer, you get a lot of time off. In my hospital room, I was online learning more about yoga and detachment. The divine told me to order crystal singing bowls. I start arguing but then say, “Fine. I’ll buy the bowls as a gift for myself for those times I’m home between treatment.” And oh my gosh, what the bowls do!
Sound vibration is ancient, but it’s making its way into the modern landscape. Vibration and sound keep the health of your body in an optimal state for receiving chemotherapy and healing. It helps people with PTSD. When you allow yourself to be bathed in sound, it’s like sitting by the beach. The sound of the waves feels good. Same thing with the bowls. They’re at various frequencies and put your body’s parasympathetic nervous system in a calming zone. If you’re stressed, how are you going to receive anything— knowledge, words, healing, medication? You can’t.
Sound is now a part of my creative and healing arts. I got FHUWLƓHGZKLOHGRLQJFKHPR, bring sound to studios across LA. I just got back from Miami, where we did two 12-hour days and curated all sorts of sound artists with different
WRROVLQFOXGLQJJRQJVDQGŴXWHV,WōVIRUSDWLHQWV students, faculty, everybody. I bring sound to hospitals at UCLA, to Long Beach City College DQGUHFHQWO\WR53$DQDGYHUWLVLQJƓUP7KLVLV making its way to corporate environments. Staff join me in a room; they sit or lie down and receive sound and then walk away with more clarity: “Oh, I’m ready for my work projects now!” Not because I’m some magical person but because of the medium. 7KHVRXQGDOORZHGWKHPWRFUHDWLYHO\ŴRZDQG surrender the locked-up tension. I create a world where people step in, and they feel held and loved. I call my sessions love wrapped in sound.
Finally, what top-line advice would you offer for someone going through cancer?
• Don’t underestimate the power of movement . Move your body no matter the state you’re in.
:KHQ,ZDVLQWKHKRVSLWDOWKRVHƓYHGD\SHULRGV with that machine—“my friend on wheels,” I called her—we’d go for walks. I got 10,000-plus steps some days. Even if I was feeling really crappy or was slow or looked like a zombie. I didn’t care. Yes, your body needs healing and repairing, but it’s imperative you don’t just stay in bed. And it took me a while to get back into yoga. I had neuropathy and couldn’t do certain things. I trusted the process, and I didn’t judge, so if I was in a class as a student and I could only do half of it, then that was OK.
Duarte’s book and sound practice resulted from cancer.
• Feed your mind . My go-to is Paramahansa Yogananda. I love his little book 0HWDSK\VLFDO0HGLWDWLRQV—it contains so much wisdom about living fearlessly and having faith and courage. I go to his temple, the SelfRealization Fellowship, in Mount Washington in Los Angeles.
• Have an open dialogue with your oncology team Assert yourself as if you’re the CEO of your health and life. I’d communicate what I take between treatments, like lion’s mane and turkey
tail (two fungi). The doctors said, “OK, but don’t do it during treatment.” There were no secrets and fears.
• Use visualization Pick one thing, a macro YLVLRQWKDW\RXFDQHQYLVLRQOLNHDŴDVKFDUGWKDW in a moment of fear you can go to and will take you to a better reality. For me, anytime I had a moment RIGDUNVWXIIRQHRIP\ŴDVKFDUGVZDVRIPHUXQning and laughing on the beach: a close-up shot. Later, that came to life. It’s not about overthinking. Just see it. “Ahhh, here it is.” Your body is guided by your mind. They’re not separate.
• Keep leaning on love—love that’s beyond a face or a religion or places or things What helped me was that I repeated “love” as a chant. It’s so simple. “Love, love, love.” Q
A Swell Plan
Edema refers to the swelling of body tissues due to fluid buildup. Six easy steps help alleviate the common condition.
MANY PEOPLE WITH CANCER EXPERIENCE EDEMA, which refers WRWKHVZHOOLQJRIERG\WLVVXHV(GHPDRFFXUVZKHQŴXLGOHDNVRXW of tiny blood vessels called capillaries and builds up. Most commonly IRXQGLQWKHIHHWDQNOHVDQGOHJVHGHPDFDQEHDVLGHHIIHFWRIWUHDWment or caused by cancer itself. (Edema is also seen in pregnancy DQGPHGLFDOFRQGLWLRQVVXFKDVKHDUWDQGNLGQH\GLVHDVHV $QRWKHU type of swelling called lymphedema may occur when lymph nodes are removed or damaged by cancer treatment, affecting the normal ŴRZRUGUDLQDJHRIO\PSKDWLFŴXLGLQWKHERG\,WLVHVSHFLDOO\FRPPRQ among women who undergo surgery for breast cancer. Your care team can help you determine the cause and the appropriate course of treatment.
Swelling can trigger a mixed bag of unpleasant symptoms, includLQJIDWLJXHGLIƓFXOW\EUHDWKLQJOLPLWHGPRELOLW\SDLQXQH[SHFWHG ZHLJKWJDLQDQGSV\FKRORJLFDOGLVWUHVV)RUWXQDWHO\SURYHQŴXLG ƓJKWLQJVWUDWHJLHVVXFKDVWKRVHEHORZFDQUHGXFHWKHVZHOOLQJ
• Cut back on salt. The American Cancer Society and numerous RWKHUPHGLFDOH[SHUWVUHFRPPHQGOLPLWLQJVDOW VRGLXP LQWDNHWR VWRSWKHERG\IURPUHWDLQLQJŴXLG'RQōWZRUU\WKRXJK )RRGFDQ be made tasty without adding salt. TheSpiceHouse.com shows how VSLFHVDQGKHUEVFDQERRVWWKHŴDYRUSURƓOHRIIRRGVŋHYHUKHDUG
RIQRVDOWUHIULJHUDWRUSLFNOHV"ŋ DQG&RRN)RU<RXU/LIHRUJDW Fred Hutch includes hundreds of recipes and nutrition advice for people with cancer.
• Chug more H 20. Did you NQRZWKDWGULQNLQJHQRXJK water signals to the body that \RXōUHQRWLQGDQJHURIGHK\GUDWLRQ"2QFHUHDVVXUHGWKDW WKHUHōVQRFULVLVWKHEUDLQJLYHV WKHNLGQH\VWKH2.WRUHOHDVH H[FHVVŴXLGWKH\PLJKWEH KRDUGLQJ,QWXUQ\RXōOOSHHRXW H[FHVVVRGLXPDQGZDVWHNH\ contributors to water retention and swelling.
• Keep it moving. Physical DFWLYLW\KHOSVPXVFOHVHIƓFLHQWO\ SXPSEORRGDQGŴXLGVWKURXJKout the body. This helps improve FLUFXODWLRQUHGXFHŴXLGEXLOGXS and support lymphatic function. ,I\RXFDQōWH[HUFLVHDWOHDVW try to minimize long periods of time sitting, lying down and standing still.
• Elevate your lower limbs. When lying down or sitting, put DSLOORZXQGHU\RXUOHJV/LIWLQJ the legs above the heart helps GLVFRXUDJHŴXLGIURPSRROLQJ LQWKHERG\ōVORZHUH[WUHPLWLHV which reduces swelling.
• Wear compression socks, sleeves and shoes. These items apply pressure to parts of the body and help minimize ŴXLGEXLOGXS
• Let massage work its magic. *HWWLQJDPDVVDJHŋDQGHYHQ JLYLQJ\RXUVHOIRQHŋFDQUHGXFH swelling and improve circulation. Also helpful are lymphatic drainage massage techniques that include gentle movements DFURVVWKHVNLQ
CANCER RESEARCH SAVES LIVES
“Organizations like Stand Up To Cancer are so important. They accelerate the pace of cancer research, so that new and innovative therapies—like the one I received—can save more lives.”
– DAN, Cancer Survivor
Help push cancer research further at
Meet an Oncology Nurse
Jessica MacIntyre, DNP, MBA, is an advanced practice registered nurse at Sylvester Comprehensive Cancer Center at the University of Miami Health Center.
Walk us through the roles of an oncology nurse.
We’ve expanded nursing into so many different areas of cancer care that we now have many opportunities to be involved. For example, we have nurse navigators, who guide patients through WKDWƓUVWGLIƓFXOWGLDJQRVLVDQG JHWWKHPLQIRUWKHLUƓUVWDSSRLQWment. We have nurses in the ambulatory center, which means outpatient care. Therapies have advanced so much that we can give many of them in the outpatient setting and also in the home. We have infusion nurses who really just focus on administration of treatment, including chemo-
therapy. And then we also have, of course, our hospital nurses at the bedside. In addition, we have nurses who help with discharge planning and making sure we’re coordinating care. We also have research nurses who help patients understand clinical trials and the study medications they’re getting. And then we have nurse practitioners—that’s the advanced practice nurse.
understand the amount of advocacy we can do on their behalf. They should ask us any question they have because we’re able to either answer that question, navigate them to the right person or even advocate for things they didn’t know were accessible to them. We’re very resourceful, and we’re
Jessica MacIntyre also leads the Oncology Nursing Society.
As an advanced practice nurse, what care do you provide? We collaborate with physicians, but we also see patients individually. Many follow-up visits are done by nurse practitioners and also physician associates. It has evolved in recent years. There are so many new cancer patients that we really need people to see our follow-up patients, and nurse practitioners help WRƓOOWKDWJDS,FDQSUHVFULEH medications for supportive care, like anti-nausea or pain medications, order exams or imaging studies and recommend additional non-pharmacologic interventions for supportive care. The scope of the nurse practitioner stops at being able to provide recommendations or prescriptions that are medical interventions.
What should people living with cancer know about oncology nurses?
Patients sometimes don’t
DEOHWRƓQGZD\VRIVXSSRUWLQJ our patients. Sometimes, we hear things from patients that doctors don’t hear but that the patients feel comfortable telling us. Then we can talk to the physician and advocate on the patients’ behalf.
What makes oncology nurses unique?
Oncology nurses are special because they see their cancer patients from the beginning of diagnosis all the way to survivorship and end of life. We build very special relationships with our patients. We know when they’re not feeling well. We become part of their family. I think the compassion and the care that we provide as oncology nurses is really different than many other specialties. And the specialty training and education that’s needed to keep up with the very complex therapies nowadays is really something special that allows us to care for our cancer patients in a very precise and personalized way. Q
Who’s on your team?
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7+(%5$,1,6$&203/(;25*$1 that controls thoughts, memory, emotion, motor skills and much more. Cancers that arise in the brain and the spinal cord are referred to as primary central nervous system (CNS) tumors. Cancer that develops elsewhere in the body can also spread, or metastasize, to the brain; these secondary tumors are often called brain mets but not brain cancer. CNS cancers are uncommon, and survival rates vary. The most common tumors are meningiomas (typically benign) and gliomas (including aggressive glioblastoma). As many types of brain cancer have no known risk factors, early detection and treatment increase the likelihood of long-term survival. Check out these resources for more details.
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The American Brain Tumor Association aims to advance the understanding and treatment of brain tumors. Its website features educational webinars, books and brochures for patients, caregivers and medical professionals. It also offers virtual VXSSRUWJURXSVDQGƓQDQFLDO assistance programs.
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The American Cancer Society raises awareness about brain cancer through a wealth of information about different types of brain cancer, early detection and treatment. Its website offers links to clinical trials and information on risk factors, life after treatment, survival rates and more.
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Brain Tumor Network provides individualized navigation and support to individuals and families. Its free patient navigation service connects cancer patients to oncology social workers, who
Discover more resources:
can provide resources and advoFDF\VSHFLƓFWRRQHōVXQLTXH needs and situation.
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Cancer Care offers specialized resources for brain cancer patients, such as support groups, community programs and virtual educational workshops. Connect with an oncology social worker for support and advice on treatment via the free Hopeline at 800-813-HOPE (4673).
&ƚƧƜƞƫ+ƨƩƞ1ƞƭưƨƫƤ 7KLVQRQSURƓWRIIHUVIUHHFRQƓdential one-on-one support to people with cancer and their families. The organization links cancer patients and their relatives to trained volunteers who have undergone and recovered from a similar cancer experience. Its website includes materials and resources for caregivers and health care professionals in Spanish and English.
(ƧƝ%ƫƚƢƧ&ƚƧƜƞƫ,ƧƢƭƢƚƭƢƯƞ End Brain Cancer Initiative
advocates for access to advanced treatment options and educates the public on brain tumors. Its online shop features a selection of books on navigating brain cancer, grief, spirituality DQGPRUH$OOSURFHHGVEHQHƓW WKHLQLWLDWLYHōVIXQGUDLVLQJHIIRUWV
*ƥƢƨƛƥƚƬƭƨƦƚ)ƨƮƧƝƚƭƢƨƧ Aiming to transform care and treatment for one of the most aggressive brain cancers, the Glioblastoma Foundation supports the development of new drugs and therapies while raising awareness and funds.
1ƚƭƢƨƧƚƥ%ƫƚƢƧ7ƮƦƨƫ6ƨƜƢƞƭƲ The National Brain Tumor Society invests in and unites the brain tumor community. Its website offers downloadable WRRONLWVWKDWDQVZHUNH\TXHVtions about diagnosis, recovery, survivorship and cancer recurrence. The NBTS Personalized Patient Support and Navigation team meets with patients and care partners to empower, educate and share resources.
TREATMENT BALMS
These gifts protect and soothe skin, comfort in challenging times and support small businesses.
Giften Market is a one-stop shop for unique gift baskets designed by small businesses. Give someone you love who is undergoing cancer treatment a Virtual Hug Deluxe Gift Box ($135) featuring lavender shower steamers, warm socks, herbal tea, soothing eye gel masks, nail care products and more. Or choose from hundreds of other specialized gift boxes— they’re sure to deliver practical comfort for any occasion.
Amoena supports women diagnosed with breast cancer and helps them return to their normal lives. Its adhesive CuraScar
Silicone Patches ($35 to $129.95) keeps scars moist and soft, minimizing scar tissue after surgeries like mastectomy or breast reconstruction. Available in four shapes (anchors, strips, squares and mammilla circles), the patches’ high elasticity suits various needs. Amoena’s other products include postsurgical compression bras and garments that promote optimal healing.
Many people with cancer have found clarity and calm by journaling about their experiences. Not sure how to start?
Check out Writing My Way Through Non-Hodgkins
Lymphoma by Terry Romaine. More than a memoir of her blood cancer journey, the book includes prompts to help jump-start your own writing. Find more inspiration in the recent self-published memoirs Life of an Ordinary Man by John Amoscato, which recounts a throat cancer battle against a backdrop of the Jersey Shore, and Grace in the Fire: A Cancer Mom Turned Fighter by Debi Nieto, who is living with multiple myeloma after helping her son survive a rare bone cancer diagnosis.
Cancer treatments can dry out and irritate the skin, and fragrances and additives in some skin care products may cause further problems. BeeCure’s natural skin care products have been clinically proved to strengthen, protect and repair the skin barrier during and after treatment. The Radiation & Laser Skin Care Cream ($29.99) uses the power of buckwheat honey and calendula oil to soothe, revive and hydrate skin damaged by radiation burns and laser therapy.
Radiation can affect a person’s salivary glands, drying and irritating the mouth. Some patients’ saliva may become thick and sticky, like mucus.
+XPLGLƓHUVFDQKHOSE\ moisturizing dry air, making it easier for folks to swallow and breathe. The Vicks :DUP0LVW+XPLGLƓHU ($44.99) soothes the mouth and lining of the throat and helps reduce pain caused by treatment. Set it by your bed to promote easeful breathing all night long!
Find more products to make life easier: cancerhealth.com/good-stuff
TAKE CARE
Complementary and alternative medicine (CAM) refers to a wide range of holistic therapies that cancer patients may use in conjunction with or in place of conventional cancer treatment. Take our survey and let us know how you use CAM.
How long have you been living with cancer?
T Less than a yearT 5–10 years
T 1–5 years T More than 10 years
T I’m cancer-free.
Have you ever discussed using CAM with your cancer care team?
T Yes T No
Does your cancer care center offer CAM?
T Yes T No T Not sure
What type of CAM have you used?
(Check all that apply.)
T Acupuncture
T Ayurvedic system
T Energy healing (Reiki, crystals, sound healing)
T Manipulative and body-based practices
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T Mind-body therapies (meditation, yoga, tai chi, qi gong, biofeedback)
T Natural products (vitamins, supplements, special diet, cannabis)
T Other (Please specify.): __________
T I don’t use CAM.
Has the use of CAM improved your physical or emotional well-being?
T Yes T No T Not applicable
How frequently do you use CAM?
T 3 or more times per week
T 1–2 times per week
T 1–3 times per month
T Less than once a month
What are your reasons for using CAM? (Check all that apply.)
T Improve energy
T Improve mental health
T Improve sleep
T Manage pain
T Reduce side effects
T 5HGXFHVWUHVVRUDQ[LHW\
T Other ___________________________
T I don’t use CAM.
What year were you born?
What is your gender?
T Male T Female
T Transgender T Other
What is your current level of education?
T Some high school T High school graduate
T Some college T Bachelor’s degree or higher
What is your annual income?
T Less than $15,000 T $15,000–$34,999
T $35,000–$49,999 T $50,000–$74,999
T $75,000–$99,999 T $100,000 or more
What is your ethnicity? (Check all that apply.)
T American Indian/Alaska Native
T Arab/Middle Eastern T Asian
T Black/African American T Hispanic/Latino
T 1DWLYH+DZDLLDQ3DFLƓF,VODQGHU T White
T Other ___________________________
What is your ZIP code?
Scan this QR code with your smartphone to take this survey at cancerhealth.com/surveys. Or email a photo of your completed survey to website@cancerhealth.com.
THE PROBLEM WITH CANCER RESEARCH THAT FOLLOWS CONVENTIONAL WISDOM IS THAT THERE’S NOTHING CONVENTIONAL ABOUT CANCER.
At the Damon Runyon Cancer Research Foundation, our research focus is singular: High-risk, high-reward. We believe that only by pursuing and investing in the most audacious and ambitious ideas, and the young scientists who have those ideas, will we achieve real and lasting victory over humankind’s deadliest enemy. To learn more, visit damonrunyon.org
