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14 BLOGGING FOR CANCER
In his writing, Ben Nathanson tries to put the ease in disease.
Ben Nathanson found his voice and a softer side of himself when metastatic prostate cancer entered his life. BY JENNIFER COOK
18 NAVIGATING CANCER
Oncology navigators improve patient satisfaction, speed effective care, reduce health disparities and save money. BY BOB BARNETT
may help older cancer patients avoid falls | managing nausea during chemotherapy | immunotherapy improves longterm survival | FDA approves new cancer treatments
Ben Nathanson, who has metastatic SURVWDWHFDQFHUƓQGVDQXQH[SHFWHG VHQVHRISXUSRVHDQGWKHUDSHXWLF UHOLHIWKURXJKEORJJLQJDERXWKLV H[SHULHQFHVDQGVKDULQJKLVNQRZOHGJHDQGKHIRVWHUVFRPPXQLW\DQG IULHQGVKLSVWKURXJKDGYRFDF\+HōV SURƓOHGLQRXUFRYHUVWRU\RQSDJH ZKLFKDOVRLQFOXGHVLQVLJKWVRQ KRZLQWLPDWHUHODWLRQVKLSVFDQWKULYH DPLGFDQFHU
Doriot Kim $57352'8&7,210$1$*(5 Michael Halliday $'9,625<%2$5' Dena Battle; Jamie Ennis Boyd; Catherine Guthrie; Timothy Henrich, MD; Carl June, MD; Leigh Leibel, MSc; Yung Lie, PhD; Gilberto Lopes, MD; Jennifer L. McQuade, MD; Amelie Ramirez, DPH; Hope Rugo, MD; Kelly Shanahan, MD; Carla Tardif
)(('%$&. Email: info@cancerhealth.com
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Highlighting alcohol use and preventable infections
The latest annual Cancer Progress Report by the American Association of Cancer Research (AACR) offers statistics and research trends. Even as overall survivorship and treatment have improved, rates of several cancers—notably breast and colorectal cancers—are rising among people younger than 50.
The 2024 report underscores the role that alcohol use and infections, such as human papillomavirus (HPV), play in cancer incidence. In fact, 40% of cancer cases in the United States are linked to preventable factors, such as smoking, excess body weight, drinking alcohol, poor diet (such as eating red meat), exposure to ultraviolet radiation and infection with HPV or hepatitis B or C.
The AACR notes that many people are not aware that alcohol is a carcinogen. In fact, alcohol is associated with six cancer types: esophageal, breast, colorectal, liver, stomach and some head and neck cancers. What’s more, drinking at an early age can increase your cancer risk later in life.
Similarly, despite robust evidence that the HPV vaccine lowers cervical cancer rates, only about 40% of youth ages 9 to 17 had at least one dose of the vaccine in 2022 (see Basics, page 12). Meanwhile, cervical cancer increased 2.5% a year between 2012 and 2019 among women ages 30 to 34.
The research outlook was more hopeful. “The future of cancer science and medicine is very promising,” said AACR president Patricia M. LoRusso, DO, PhD. “Cancer diagnostics are becoming more sophisticated. New technologies are helping us study tumors
DWDFHOOXODUOHYHO$UWLƓFLDOLQWHOOLJHQFHŊEDVHG approaches are beginning to transform cancer detection, diagnosis, clinical decision-making and treatment response monitoring. These advances will result in improved patient care.”
Missing: 130K Diagnoses
As the COVID-19 pandemic unfolded in 2020, many people skipped their routine health screenings, resulting in a predictable drop in new cancer cases. Health experts assumed these missed diagnoses would show up once life returned to normal the next year. An analysis published in JAMA found that as of December 31, 2021, cancer rates did recover “meaningfully” but that a number of patients expected to be diagnosed remain unaccounted for. In fact, about 130,000 diagnoses were still missing. Future data may help solve the mystery.
Weighted Blankets: A Big Hug
Feeling anxious while receiving an infusion? Try relaxing under a weighted blanket. Cheri Hermann, RN, a staff nurse with the Dana-Farber Cancer Institute, began offering them to people getting infusions during COVID-19, when her patients felt especially alone and scared. “When we put a weighted blanket around a patient, their whole expression changes,” Hermann says in a DanaFarber press release. “It’s like giving them a big hug and letting them know, ‘We’ve got you. Things are going to be OK.’” She also helped design research that showed the weighted blankets were in fact helpful, and now they’re offered throughout Dana-Farber, with other health centers across the globe interested in doing the same. “When they put it on me, my anxiety instantly drained away,” an 82-year-old Dana-Farber patient recalled. “I felt a sense of calm, peace, security and deep relaxation.”
Breast Cancer Roundup
IUDs and risk, screenings and breast density, rates among Asian Americans and Pacific Islanders
Recent headlines build on our growing and nuanced knowledge about breast cancer, which remains the most common cancer diagnosed among U.S. women after skin cancer. Here’s a look:
• While overall rates of breast cancer inched up 1% a year during 2012 to 2021, survivorship also improved thanks to early detection and treatment advances, found an American Cancer Society (ACS) report. Yet alarming disparities persist, especially for Asian-American DQG3DFLƓF,VODQGHU $$3, women as well as for Black and
Native American women. Of note: Diagnoses in AAPI women younger than 50 jumped by 50% since 2000.
• Women who use certain hormone-releasing intrauterine devices (IUDs) may have an increased risk for breast cancer, according to a study involving Danish women published in -$0$6SHFLƓFDOO\ZRPHQLQ the study used levonorgestrel IUDs, but researchers noted that the overall risk remains low and is not a cause for alarm.
• U.S. women have, on average, a 13% chance of developing breast cancer, but, according
to ACS, those with dense breast tissue have a 15% to 20% higher risk of the cancer and of receiving a false-negative mammogram, though the screening is still recommended. (About 40% of women have dense breasts.) A new federal rule calls for health care providers to inform women of their breast density and of their potential supplemental screening options.
Black Patients & Clinical Trials
African-American cancer patients are underrepresented in clinical trials. Why don’t more Black people enroll if offered the chance? A distrust in medical research—which is rooted in historically unethical research—and spiritual beliefs may play important roles, according to surveys from two Baltimore medical centers. Findings were presented at the American Society for Radiation Oncology (ASTRO) annual meeting.
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likely to agree with statements that death or illnesses were determined by God’s will, and 20% of Black people said they agreed that research harmed minority populations, compared with zero
non-Black patients, according to an ASTRO news release. What’s more, 33% of Black patients said they felt research would yield details about their health they would rather not know about, and Black people were 10 times more likely than their non-Black peers to say they felt they and their community had nothing to gain from participating in the research. The good news is that 90% of Black and non-Black participants said they trusted their current cancer care team.
“If we want to improve recruitment of underrepresented people in clinical research, we cannot just talk about trial goals,” said Charlyn Gomez, lead author of the study and a medical student at the University of Maryland School of Medicine. “We have to look beyond that to understand where the patient is coming from and what their priorities are.”
EXERCISE MAY HELP OLDER CANCER PATIENTS AVOID FALLS
Conversations between older people with cancer and their health care providers may lead to increased physical activity that reduces the risk of falling. Falls can lead to serious problems, such as head injury or bone fractures, and are a leading cause of death for the elderly population. Physical activity strengthens muscles, improves balance and can help prevent falling.
Researchers at the Dana- Farber Cancer Institute analyzed data from more than 100,000 Medicare recipients over age 65 undergoing cancer treatment. They asked participants whether they had discussed physical activity with health care providers and whether they had experienced a fall.
More than half (57%) recalled starting a conversation about physical activity, and 51% said their doctors had advised them that increased physical
activity could help reduce their risk of falling. Overall, the incidence of falls remained stable, at about 30%. However, people who had discussed physical activity and those who had received advice to increase their activity were 21% less likely to have experienced a fall. This study did not analyze actual changes in exercise, but people who started conversations and received advice may have been more motivated to increase their physical activity.
“This study highlights that counseling about physical activity may reduce fall risk,” says Eleonora Teplinsky, MD, of Valley Health System. “Physical DFWLYLW\KDVPDQ\RWKHUEHQHƓWVDVZHOODQGVKRXOG be considered as part of routine oncologic care.”
Managing Nausea During Chemotherapy
Nausea and vomiting are common symptoms of cancer medications and radiation therapy that can lead to inadequate nutrition, interfere with daily activities and cause patients to stop treatment prematurely.
Researchers evaluated 1,300 women undergoing chemotherapy for breast cancer. They received standard anti -nausea PHGLFDWLRQVGXULQJWKHLUƓUVW chemo cycle, but 310 nonetheless experienced at least moderate
nausea and were randomly assigned to add olanzapine (Zyprexa) or prochlorperazine (Compazine)—two drugs used to treat schizophrenia—or a placebo during their next chemo cycle.
%RWKGUXJVVLJQLƓFDQWO\UHduced nausea compared with the placebo, but olanzapine was more effective for people with severe nausea. Women who received olanzapine also reportHGDVLJQLƓFDQWLPSURYHPHQW in their overall quality of life.
“[Olanzapine] could ultimately make the chemotherapy experience more tolerable and manageable,” says lead study author Luke Peppone, PhD, of the University of Rochester Medical Center.
In another study, researchers evaluated an oral cannabis extract for people who experienced nausea or vomiting during chemo despite standard anti-nausea meds. Eligible participants were randomized to add capsules containing tetrahydrocannabinol (THC) and cannabidiol (CBD) or placebo capsules.
Patients who received the THC/CBD capsules were three times more likely to experience a complete response, meaning no vomiting or retching and no use of rescue medications (24% versus 8%, respectively). Those who received the cannabis extract also reported fewer daily vomiting episodes and had higher quality - of- life scores.
Immunotherapy Improves Long-Term Survival
Long-term data show that about half of metastatic melanoma patients treated with two immune checkpoint inhibitors survived cancer-free for at least a decade. In 2011, the median survival time for people with advanced melanoma was just over six months, but the emergence of immunotherapy has gradually increased survival.
The Phase III CheckMate 067 trial followed 945 patients in 21 countries. The researchers previously reported that a combination of Opdivo (nivolumab) and Yervoy (ipilimumab) dramatically improved outcomes, with LQFUHDVHGVXUYLYDODWWKUHHƓYH
and 6.5 years. Now, they have shown that patients without cancer progression at three years have a high likelihood of remaining alive and diseasefree at 10 years. What’s more, the 10-year analysis found no concerning signals of longterm toxicity.
Other studies presented at this year’s European Society for Medical Oncology Congress add to the good news. Researchers reported improved long-term survival for women with early stage triple-negative breast cancer treated with Keytruda (pembrolizumab) before and after surgery and for patients
with muscle-invasive bladder FDQFHUZKRUHFHLYHG,PƓQ]L (durvalumab).
“The main message from all of these studies is that immunotherapy continues to keep its promise and hope of longterm survival for many patients with different types of cancer,” says Alessandra CurioniFontecedro, MD, of Hospital of Fribourg in Switzerland.
FDA APPROVES NEW CANCER TREATMENTS
In August, the Food and Drug Administration (FDA) granted accelerated approval of Tecelra (afamitresJHQHDXWROHXFHO ŋWKHƓUVW7FHOOUHFHSWRUWKHUDS\ for solid tumors—for people with inoperable or metastatic synovial sarcoma. Tecelra is a gene therapy created from a patient’s own T cells. A VDPSOHRIFHOOVLVUHPRYHGDQGJHQHWLFDOO\PRGLƓHG to express a natural T-cell receptor that targets MAGE-A4, an antigen expressed on cancer cells. In the Phase II SPEARHEAD-1 trial, the overall response rate was 43%, and 39% of responders were still doing well a year later.
The FDA also gave the green light to Lymphir (denileukin diftitox), a new type of immunotherapy for relapsed or refractory cutaneous T-cell lymphoma, a rare type of non-Hodgkin lymphoma. Lymphir is a recombinant protein that targets the IL-2
receptor on malignant T cells and carries a diphtheria toxin to kill the cells. In a Phase III study, the overall response rate was 36%, and about half of these responders had a durable response lasting at least six months.
,Q6HSWHPEHUWKH)'$DSSURYHGWKHƓUVWLQMHFWable immune checkpoint inhibitor, giving patients an alternative to IV infusions. The new formulation of Tecentriq (atezolizumab), administered via subcutaneous injections in the thigh, reduces treatment time to about seven minutes compared with up to an hour for infusions. The injectable and IV formulations had similar overall response rates, overall survival, progression-free survival and safety in a study of people with lung cancer. What’s more, about 70% preferred the injectable version, citing increased comfort and reduced emotional distress.
A Kidney Cancer Diary
Born on the bayou, Brandy Verdin, 49, a retired personal trainer and fitness nutrition specialist and mother of two adult children, lives with her husband in Gray, Louisiana. She was diagnosed with Stage IV renal cell carcinoma in May 2023.
April 2023
I was at the gym and went to the restroom to urinate and felt something like a pressure. When I looked in the toilet, I saw what looked like a bloody worm and took a picture of it. I thought it was a parasite. I was in the best shape of my entire life and didn’t feel sick. Increasingly, after going to the bathroom, I’d notice little blood clots in the toilet. I started to feel weak. I thought I was anemic, so I went to my general practitioner and showed her the picture. She said, “I think you have either kidney or bladder cancer.” I told her cancer doesn’t run in my family. She referred me to a urologist. My labs showed that my hemoglobin was 7.5 grams/deciliter at the time. [The normal range for women is 12 to 16 g/dL.]
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was born. It was a joyous time in our family. The next day, the urologist told me at my appointment, “I believe you have kidney or bladder cancer, but it’s treatable so don’t freak out.”
May 2023
On May 1, the urologist sent me for a CT scan and full blood panel. I wasn’t worried at all. I had the CT scan at 8 a.m. I kept my appointment for a facial. ,JRWKRPHDOLWWOHDIWHUƓYHDQGSXOOHGXSWKH portal for the hospital and read my CT scan. I had a 14-by-13-by-11-centimeter tumor [5.5-by-5-by-4 inches; about the size of a large grapefruit] on my left kidney that had metastasized to both lungs. I let my children know and called my husband. I told him to come home from work. I thought no matter what I was facing, I was going to trust God. The next day I met with the urologist. He said there was nothing he could do and sent me to his surgeon friend at Ochsner Medical Center in New Orleans. After that, everything happened quickly.
Brandy Verdin receiving treatment
By May 5, I had an appointment with the surgeon. He and a medical oncologist there tried to get me approved for surgery. But the tumor board declined my case, saying I would never survive surgery, so the medical oncologist developed a treatment plan to start me on immunotherapy and targeted therapy. [Editor’s note: Sometimes drugs can shrink tumors enough to make surgery possible.]
Before we could start, my hemoglobin count plummeted. I was hospitalized for two days and given two pints of blood. They didn’t think I was going to make it, but I did. My son had a wedding shower, and I pleaded with my doctors to let me go. They said it might be one of the last events I would have with my family, so I was allowed to go. I was determined to see my son get married in November.
June 2023
When all this started, I was in the middle of seeing a holistic doctor. On June 1, some of the tests she did came back, and I did indeed have a parasite. On June 15, I was treated for that with oral medications, and I also started the immunotherapy and targeted therapy regimen. Fortunately, the terrible side effects they predicted didn’t happen. I did really well on the therapy.
July–August 2023
Everything went well. I went back to the gym and started weight lifting and sprinting again. In August, a CT scan showed that the cancer was stable.
September–October 2023
In late September, I again noticed bleeding. I didn’t know if it was coming from the urethra or vagina. In
October, I developed a tumor near my urethra, so I had to have surgery. The doctors believed it was because the treatment was no longer working. I had surgery on October 17. The surgeon told me she wasn’t sure she would be able to remove it, so I prayed. They told my husband I would be in surgery for two hours, but the procedure lasted 11 minutes. When the surgeon went to remove the tumor, it just fell off, so they sutured the site. In late October, I began oral treatment with a new targeted therapy drug at a dosage of 60 milligrams. I was on that for 10 days, but it was too strong. They lowered the dose to 40 mg, and that worked well.
Brandy Verdin, second from right, at her son’s November 2023 wedding
November–December 2023
On November 7, I met with the surgeon who was supposed to do the kidney surgery. He said, “The cancer that you have is really bad. I’m sorry to tell you this, but you’ll never have surgery.” I told him I saw myself walking down that hallway after surgery. I believed it was going to happen. I continued the targeted therapy through November and December.
January 2024
In January, a CT scan showed that not only was the tumor stable but it had shrunk. There was no new metastasis. I was going to the gym and just living my best life, taking my medicine and standing in faith.
April 2024
My physique had returned, and I was modeling for DƓWQHVVDSSDUHOOLQH$IWHUDQRWKHUVFDQVKRZHG
I was still stable, the medical oncologist said we would talk with the surgeon. She told me, “You are in a different place right now. I believe you’re a candidate for surgery.” The surgeon ordered an
MRI and said, “I can’t believe this. Let’s do surgery.” Since I was already in chemopause [chemo-induced menopause], I asked if I could have a hysterectomy because of the possible threat to more parts from metastasis.
May 2024
On May 15, my surgery lasted about nine hours. I didn’t wake up in recovery until seven that night. My family was a nervous wreck.
One of the hardest things I faced about possibly losing my life was thinking of my husband and the mourning that he and my children would go WKURXJK,GLGQōWZDQWWRLQŴLFWSDLQRQWKHP
The great thing was I woke up breathing on my own, not on a ventilator. My kidney [and tumor] was removed. Eight lymph nodes were removed, four of which had cancer in them. The other four were close to other sites in my body, and my left adrenal gland was removed. Doctors had also repaired my inferior vena cava [the large vein that carries oxygen-depleted blood from the lower body up to the heart] because the cancer had intruded there, and they performed a total hysterectomy.
The one complication that occurred healed on its own. But I was put on a no-fat diet for two weeks.
During recovery, I walked for two minutes ƓYHWLPHVDGD\$WZHHNVL[,ZDVZDONLQJIRU minutes. By week 10, I was back in the gym and had begun lifting weights again. I felt like I had a brand-new body and felt on top of the world.
August 2024
$WWKHHQGRI$XJXVWZHHNVSRVWRS,VDZ the surgeon and learned that I had a 6 cm tumor [2.4 inches, the size of an egg] on my bladder.
September–October 2024
When September began, I started two new targeted therapy drugs. I continued training in the gym, praying through some excruciating pains. When I have pain-free days and nights, I thank God. I’m standing in faith that I will be healed, so I’m going to trust God.
HPV-Related Cancer
Vaccination can greatly reduce the risk of cervical, anal, oral and other types of cancer.
HUMAN PAPILLOMAVIRUS
(HPV), the most common viral sexually transmitted infection, can cause several types of cancer. Most people acquire one or more HPV variants soon after they become sexually active, but an effective vaccine can prevent HPV infection and its complications.
There are more than 200 types of HPV, most of which do not cause symptoms. But high-risk, or oncogenic, types, including 16 and 18, can cause cervical, anal, vaginal, penile and some mouth and throat (oropharyngeal) cancers.
HPV lives in epithelial cells on the surface of the skin and mucous membranes. The virus can trigger abnormal cell growth, progressing from dysplasia to precancerous cell changes (squamous intraepithelial lesions or intraepithelial neoplasia) to invasive cancer.
Cervical cancer is a leading cause of cancer death for women worldwide, but incidence has fallen dramatically in the United States and other countries that have introduced routine screening (see page 29 for cervical cancer resources).
The U.S. Preventive Services Task Force recommends cervical cancer screening starting at age 21. There are no anal cancer screening guidelines for the general population, but it is recommended for those at higher risk, including gay men and
people living with HIV. Oral cancer screening involves a visual examination of the mouth, usually done by a dentist.
Cytology tests—better known as Pap smears— are the traditional method of cervical cancer screening. A doctor or nurse uses a small brush to collect a sample of cells from the cervix (the opening of the uterus) to examine under a microscope. A similar test can be done for anal cancer. Tests for high-risk HPV may be done along with or instead of Pap screening.
7KHUHLVFXUUHQWO\QRVSHFLƓF antiviral therapy for HPV infection, so treatment focuses on managing abnormal cell growth.
Using condoms can reduce HPV transmission, but they provide only limited protection, and HPV can also spread via nonsexual skin-to-skin contact, so vaccination is the best prevention. The Gardasil 9 vaccine protects against seven types of cancer-causing HPV (16, 18, 31, 33, 45, 52, 58) and two types that cause genital warts (6 and 11).
The Centers for Disease Control and Prevention recommends Gardasil 9 for girls and boys ages 9 to 12, with catch-up vaccination through age 26. However, the Food and Drug Administration has approved the vaccine for people up to age 45, and some older individuals PD\VWLOOEHQHƓWŋIRUH[DPSOH someone who resumes dating after a long-term relationship.
If dysplasia is found, the next steps may include colposcopy or anoscopy (examination of the cervix or anus using a lighted magnifying instrument), imaging scans or biopsies. In some cases, areas of abnormal cells can be removed to prevent progression to invasive cancer.
If neoplasia has progressed, treatment for cervical, anal, genital and oral cancers may involve radiation, chemotherapy, targeted therapy medications or immunotherapy. Ask your doctor whether you might be eligible for clinical trials of new treatments.
People with sexually transmitted infections often experience shame or stigma, which can discourage seeking care. But regular HPV screening and prompt treatment of dysplasia can prevent progression to cancer that is harder to treat. Q
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Blogging Cancer
Ben Nathanson, a retired engineer, found his voice and a softer side of himself when metastatic prostate cancer entered his life.
BY JENNIFER COOK
IT ALL STARTED WITH A MISUNDERSTANDING.
More than a decade ago, Ben Nathanson, now 69, an electrical engineer with a wife, son and daughter, was working at IBM in Westchester County, New York. A urologist would visit annually to do digital rectal exams and PSA tests for the male sta . (See the PSA sidebar on page 16.) One year, Nathanson’s PSA was a little elevated, so he had a biopsy, which was negative.
Because his PSA tended to run a bit high, the urologist said, “Don’t be alarmed if it’s a little high in future tests. You can safely ignore it.” However, “a little high” meant one thing to the urologist and something else to Nathanson, who had a series of PSA test results over 4.0. “I should have taken action,” Nathanson says. “I realized this horrible mistake I’d made. He did not mean numbers this high should be ignored,” especially given that Nathanson’s father had prostate cancer.
Ben Nathanson shares prostate cancer data and experiences via Substack blogs.
Meanwhile, Nathanson was hav-
ing increasing trouble urinating. “I gured, Well, I’m an old man, that happens,” he says. When it became intolerable, in 2018, he saw another urologist, who told him his prostate was nodular. “I’d heard ‘Your prostate is small,’ ‘Your prostate is big,’ but ‘nodular’ I had not heard—and he did not look happy about it,” he says. e doctor scheduled an MRI-guided biopsy that revealed prostate cancer.
Do-Si-Do With Cancer
Surgery to remove Nathanson’s prostate was scheduled for February 2019. “ e prostate was a monster,” he says, and the urologist “struggled to get it out.” His cancer was categorized as Stage pT2, meaning there was no evidence that the cancer had spread. “In this sort of pseudo-equilibrium of good news and bad news, the bad news was that it was ductal type, which is aggressive but so rare that they can’t
really generalize about it and they don’t really have a targeted treatment for it,” he says. “ e good news was that it had not escaped the capsule, so things looked good.”
In a revealing Substack blog titled “ e patient is responding,” which Nathanson started in 2022, he wrote that one of prostate cancer’s “rites of passage is post-prostatectomy exultation over an undetectably low PSA,” adding, “I frolicked with this for nearly two years.” When his PSA rose to 0.22 in December 2020, he had a specialized and, at the time, unapproved PSMA PET scan to look for metastases, or mets, that could be targeted with salvage radiation. e PET scan showed nothing, but the CT part of the scan revealed nodules in Nathanson’s lungs—a not uncommon nding—but they were too small to biopsy. He and the radiation oncologist agreed to do an experiment: He would go on hormone therapy, or androgen deprivation therapy (ADT)—which aims to starve prostate cancer cells of hormones that help them grow—for three months. Afterward, the nodules would be rechecked. If they shrank, it would be evidence of prostate cancer and there would be no point in doing salvage radiation to eliminate any errant cancer cells remaining in the prostate bed.
But the nodules did not shrink, and Nathanson had 40 rounds of radiation between March and May, along with hormone therapy, which he continued until the end of 2021 “because there was some equivocal indication that maybe more is better in these cases,” he says. Just as the last ADT shot wore o in March 2022, his PSA started rising, and in
PSA SCREENING
May, the lung nodules were biopsied and found to be prostate cancer. at July, a second PSMA scan showed that the mets were con ned to his lungs.
Blogging as Therapy
A paper about the hallmarks of cancer that Nathanson read in Scienti c American proved to be a revelation. “It made me realize that cancer is not just some back-alley tough; it’s an extremely sophisticated disease, extremely wily. It is, in some sense, a criminal mastermind. at really changed my outlook toward cancer—that it is something worthy of my respect,” he says.
“I was awed by how much the body does to prevent this kind of maloccurrence,” he continues. “I had not cared about biology throughout my engineering career. is really turned me around. I had to learn more.”
Nathanson launched “Progressions: a deep look at prostate cancer” on Substack on April 12, 2022, with a post titled “Meet your body’s worst tenant.” Subsequent posts have explained the role of the prostate (“ e gland you left behind”) and provided a deep dive on prostate cancer (“Your tumor’s mug shot”), among other topics.
He aims to translate medical terms into ordinary English for readers. “I thought I could tell people just the stu that’s pertinent, give them enough background to absorb it.”
ere have been bene ts for Nathanson too. He nds grati cation in crafting the blogs—which involves rewriting to discover just the right turns of phrase—“coming up with the sentences that sound the way I want, the act of expressing myself in writing.”
According to the American Urological Association and Society of Urologic Oncology 2023 guidelines, prostate cancer screening should be based on shared decisionmaking with a doctor and, if done, should start with a EORRGWHVWWKDWPHDVXUHVSURVWDWHVSHFLƓFDQWLJHQ (PSA), a protein produced by the prostate gland. It is normal to have some PSA in the blood. What’s considered an elevated PSA is now thought to increase with age. Most studies have found that for people in their 40s, the threshold is 2.5; for those in their 50s, it’s 3.5; for those in their 60s, 4.5; and for those in their 70s, 6.5. (Levels higher than 10 are considered above normal range.) For people at average risk for the disease, testing may begin between ages 45 and 50; for those at higher risk (Black ancestry, germline mutations or a strong family history of prostate cancer), testing should begin at age 40 to 45.
Another perk is that “it’s a kind of distraction… and kind of therapeutic,” he says. “In a sense, I am dealing with my illness but in a way that doesn’t cause me needless worry. Instead of worrying what it’s like to have lung mets, I can relish the sophistication of cancer and the ingenuity of researchers and the interesting stories that are hidden behind the jargon of journals.”
Nathanson launched his second blog, “ e patient is responding,” in order to share news about his health. “For someone who spends so much time thinking about cancer, I actually don’t like to think about my situation, and I don’t like to talk about it,” he says. Blog posts such as “Let’s put the ease in disease,” “Real men don’t need
testosterone” and “Party like it’s 1880” reveal his sense of humor and joie de vivre.
“Cancer people can go through terrible things, but when you share them, it’s hard not to think, I feel terrible for you, but why are you sharing this—because I can’t help you,” he says. “So that has been the goal—to share the news in a non-whiny way. When people talk to me about the blog, in some weird way, they nd it uplifting. And it’s intended to be.”
Community Comforts
Nathanson is active with AnCan, the peer-topeer support organization formerly known as Answer Cancer that provides virtual online support groups. Among the participants, there’s a diversity of cancer subtypes, so you can learn about symptoms and treatments for rarer ones, and there’s geographical diversity, which means if you live in Tulsa, for example, you can nd the best oncologists there.
“As a practical matter, it’s good to tell people what to expect,” he says. “ e illness is very isolating, and it’s vital to know that other people are experiencing the same horrible symptoms— it’s not just you. at’s salutary in its own right.” anks to AnCan, he has formed deep and consequential friendships with people who are also sick—as well as with those who are not.
WHAT ABOUT SEX?
Men often fear the consequences of prostate cancer and its treatment, especially the loss of their sex drive and function. The prostate, about the size of a walnut and located below the bladder, SURGXFHVŴXLGVWKDWPL[ZLWKVSHUPWRFUHDWHVHPHQ WKHJODQGDOVRKHOSVSURSHOWKHŴXLGGXULQJHMDFXODWLRQ What’s more, hormone therapy that suppresses androgens can lead to loss of libido. Ben Nathanson offers insights on how an intimate relationship can thrive despite these changes.
• Examine what makes sex pleasurable. So much of what we experience as pleasure is unexamined, including VH[,I\RXVWRSWRDQDO\]HLWVFRPSRQHQWSDUWVWRƓQG out what makes sex meaningful to you, you’ll see that a lot of what you need is still there—“a lot of what you’re WU\LQJWRJUDWLI\ZLWKVH[FDQVWLOOEHJUDWLƓHGŐ
• You likely won’t miss your sex drive. “It’s not like your face is pressed against the shop window and you ZLVK\RXFRXOGSDUWDNHLQWKLVDQG\RXFDQōWŐKHVD\V Instead, your sexual desire may become something that is less interesting, in large part. You may feel the feelings but no longer feel wildly driven to act on them.
• Look beyond the sex act. A lot of what you want may be different from the act itself—closeness with your partner, for example.
• Enjoy the feeling of freedom. “Part of what makes VH[IXQIRUSHRSOHZKRƓQGLWIXQLVWKHIUHHGRPWRVHW aside their rational self and be a little more animal-like. 7KHUHōVQRUHDVRQ\RXFDQōWFRQWLQXHWRGRWKDWŐ
Once a month, Nathanson moderates his AnCan group’s weekly video calls, and he has served as a patient advocate on a guidelines panel for the American Urological Association, which published new guidelines for prostate cancer salvage therapy this year. He also has been a reviewer for PCRP, the Prostate Cancer Research Program, which is a part of the Congressionally Directed Medical Research Program (CDMRP) within the Department of Defense. e CDMRP is a major source of research funding, second only to the National Institutes of Health, and a main source of prostate cancer research funding. “Part of what I love about the work,” he says, “is that it’s a chance to learn more.”
Choose the Life You Are Given
Although his own mistake might have led to Nathanson’s delayed prostate cancer diagnosis, he long ago forgave himself. “I actually believe mistakes are, in a way, my
religion,” he says. “My entire career was about mistakes. I was a copy editor. And then, at IBM, I would go over logic designs for computer chips and my only purpose was to nd the mistakes. My father, personality-wise, was a fault nder, so I know where I get it from.”
Nathanson has been transformed by his illness in a way he likens to annealing a metal, where you heat and disorder the molecules and then cool them so they can realign, forming a more manageable, less brittle structure in the end. With cancer, “so many things are taken away. You have to reassess. You have to reinvent,” he says. “I’ve had a chance to regroup, to think things over and make a fresh start. So cancer has been, in that sense, a fresh start.
“If I had just retired, who knows what loose ends I’d be at. is has given me direction, focus, new friends, a new attitude. It’s not hyperbole to say it’s been a rebirth.” Q
Patient navigators improve patient satisfaction, speed effective care, reduce health disparities and save money. Why aren’t there more of them?
BY BOB BARNETT
ONE SEPTEMBER MORNING IN 2010, BRENDA
Guthrie, an accountant in central North Carolina, stopped to have breakfast at her favorite café, Liberty Family Restaurant in Lewisville, before work. It may have saved her life.
She recognized oncology nurse Sharon Gentry, RN, from a newspaper article. Gentry, who has served on the leadership council of the Academy of Oncology Nurse & Patient Navigators (AONN+) and currently is editor-in-chief of the Journal of Oncology Navigation and Survivorship, had started the area’s rst breast cancer patient navigation programs in nearby Winston-Salem in 2000.
“You’re that breast cancer lady, right?” asked Guthrie, who proceeded to describe her symptoms. It was a lucky cup of co ee. Gentry made an appointment for her that afternoon with a breast cancer surgeon. A biopsy revealed in ammatory breast cancer, an aggressive variant that can spread rapidly. Guthrie started chemo that month, had surgery in February 2011 and started radiation in May. She’s been cancer-free ever since.
Gentry supported Guthrie through each step. “Sharon was a wealth of information for my every question, guided me to where I needed to go, told me what to expect. When I was terri ed of radiation, she told me I’d spend more time taking my clothes o and putting them back on than during actual radiation. She helped relieve stress and anxiety, gave me calmness. I don’t know how anyone can get through a cancer journey without the blessing of a nurse navigator.”
also o er certi cation. “Studies across the board show that navigators help cancer patients have better outcomes, and they actually save or make money for hospital systems,” says Hoehn, whose review found that 70% of studies noted a signi cant improvement in treatment completion among patients, and 87% of patients reported greater satisfaction. “If you deploy navigators to get patients screened for breast cancer, prostate cancer or colorectal cancer, screening rates go up,” he says. “Having a navigator after diagnosis improves the timeliness of treatment, which improves outcomes and improves well-being, quality of life—the stu that is so important to the patient.”
Given all this evidence, says Hoehn, “I just can’t wrap my head around why we’re not doing this more.”
A POWERFUL EQUALIZER
A cancer diagnosis can be daunting, overwhelming and confusing, and care may be fragmented across many providers. An oncology navigator can help you understand what’s happening and overcome any barriers to getting the best care. “An oncology navigator connects with a patient, establishes a trusting relationship and addresses whatever needs the patient has,” says Richard Hoehn, MD, a surgical oncologist at University Hospitals Cleveland Medical Center, who coauthored a 2024 systematic literature review of oncology navigation.
from top left: Sharon Gentry, Linda Burhansstipanov, Sydney Roberts and Andrea Dwyer
While oncology navigation is an e ective tool for nearly anyone facing cancer’s complexities, it has proved to be particularly powerful for addressing one of the most vexing aspects of cancer care— health disparities among racial, ethnic and Indigenous minorities, rural and inner-city populations and the uninsured. Indeed, that’s its origin story.
Whether they’re a nurse, social worker or a nonclinical community member, a patient navigator gets special training and accreditation. AONN+ provides separate certi cation programs for nurse navigators and for nonclinical patient navigators. Many academic cancer centers
In 1990, frustrated that so many of his patients presented with advanced disease, Harold Freeman, MD, a surgical oncologist in Harlem since the late ’60s, set up the nation’s rst patient navigator system. rough improved screening and timely treatment, ve-year-survival rates for breast cancer increased from 29% to 70%. Later, at the National Cancer Institute, he showed in a 2012 study of people with breast, cervical, prostate and colorectal cancers that navigation “shortens the critical time from abnormal ndings to diagnosis and treatment in poor populations.”
“Harold Freeman really understood that the needs of the community matter, whether that is uninsured
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communities of color or rural and frontier communities,” says Andrea Dwyer, director of the Colorado Cancer Screening Program at the University of Colorado Cancer Center and chair of the National Navigation Roundtable. “Not everything looks the same for all patients.”
In 1994, Linda Burhansstipanov, DrPH, a Cherokee woman who’d been working in public health since 1971, showed how the model could work in a very di erent population—also extremely poor but geographically and culturally isolated: American Indians. She trained American Indian “native sisters” and one “native brother” as navigators to work in Los Angeles and Denver to improve cancer screening and treatment; in later years, non-native navigators were added. “One of our biggest ndings was that you need to have someone from the community, respected by the community, who understands the culture and the challenges. It’s so hard to say, ‘I can’t do this alone—I need help.’ Navigators create a safe place where you can do that, and that is phenomenally powerful.”
Appropriate cancer care is often hundreds of miles away, so she helps with transportation, lodging and access. But there are cultural barriers too. Some native individuals consider cancer to be a death sentence—partly because mortality actually is so much higher in this community. “People say, ‘I thought if you had cancer, it meant you were dying, but now I see people being happy, laughing, living their life—they’ve experienced cancer, and now they’re a thriver,’” says Burhansstipanov. Celebrating survivors, she adds, makes it easier to motivate the newly diagnosed to overcome barriers to care.
Sydney Roberts, community program manager at e Gathering Place in Beachwood, Ohio, a suburb of Cleveland, knows the power of community-based patient navigators. e Gathering Place o ers services to individuals, families and caregivers free of charge. Often, Roberts’s clients have limited access to resources, and many, like Roberts, are Black. She helps them with whatever is standing in the way of getting the best care, whether it’s transportation, childcare, paying for utilities or groceries, life insurance, legal issues (like power of attorney), wigs for hair loss due to chemotherapy, medical library research and referrals to medical or mental health professionals. “We connect people to resources that they may not know exist,” she says. “We stand in the gap.” Roberts recently helped a client in recovery from substance use disorder who was diagnosed with Stage III breast cancer get a $1,000 grant from the Breast Cancer Fund of Ohio, “which was
FINDING YOUR NAVIGATOR
If you have a relatively simple cancer diagnosis, have good insurance, can afford time off, are comfortable researching medical information and have a supportive network of family and friends, you may not need an oncology navigator. But if you are undergoing complicated or challenging treatment, want help understanding what the doctor is sayLQJKDYHƓQDQFLDORUHPSOR\PHQWRULQVXUance issues, are scared or feel isolated or face any other barrier to getting better, then you PD\EHQHƓW+HUHDUHZD\VWRƓQGKHOS
Ask at the beginning of care—and when new needs arise. Ask your care team if you can work with an oncology navigator; one may be available but only upon request. “You can ask anywhere along the continuum of your care, ‘Do you have a navigator who can explain this to me?’” says Sharon Gentry, RN, an oncology nurse and navigator. “If they don’t, then ask, ‘Who is the person who’s going to help me through all this? Who’s going to be my single point of contact?’” Many advocacy organizations in the community may also offer navigators who can connect you to local resources as well as national support, Gentry adds. “Even if there is not a formal navigation program, nearly every cancer center offers an opportunity to meet with a nurse or social worker who may be able to informally help you navigate the system.”
Look for online and telephone support.
0DQ\QRQSURƓWVRIIHUWHOHSKRQHEDVHGVHUvices. Cancer Care, for example, has “resource navigators,” and the American Cancer Society offers cancer information specialists. Many FDQFHUVSHFLƓFQRQSURƓWVRIIHUVLPLODUIUHH services. While not a substitute for a trained oncology navigator, these services can connect you with information and resources to help you overcome barriers.
Be your own advocate. “Ask questions,” VD\V5LFKDUG+RHKQ0'DQH[SHUWLQRQFRORJ\ navigation. “Any cancer program should have some resource to support patients aside from their medical needs. Say, ‘This is what I need—I view it as necessary to completing the treatment you are recommending.’”
enough to get her through the hump of being down from work because of her surgery, and now she’s back to working parttime. She’s had her ups and downs, but she’s doing OK. It’s been a joy to watch.”
In Lorain, Ohio, Ana Melendez, a caseworker at El Centro de Servicios Social (in English, “the center for social services”), supports a predominantly Latino community. Her own parents hail from Puerto Rico. Melendez works with patients facing various cancers, including lung, colon, breast and cervical cancer, as well as leukemia. Many of her clients have limited English pro ciency, and some are undocumented, which makes them anxious about o cial interactions. She meets them at the hospital to guide them through the process, arranges for interpretation services and consistently follows up. “If I see that someone needs additional support, I’ll reach out more,” she says.
NAVIGATORS IMPROVE ALL THE STUFF THAT IS SO IMPORTANT TO THE PATIENT.
says study coauthor Kris Blackley, RN, director of patient navigation at the Atrium Health Levine Cancer Institute in Charlotte, North Carolina, which employs 38 fulltime nurse navigators. “But when we looked at our institution, minorities—85% of whom had navigation—had equal outcomes, even though more white patients had insurance. e study concluded: “Providing equal access to care and availability of an active nurse navigation program may overcome racial health disparities.”
THE POWER OF NURSING
While navigation is particularly powerful for underserved populations, it is clearly bene cial to the broader population of people facing cancer, research shows. Some institutions o er it to every patient soon after diagnosis.
Further research has demonstrated the power of navigation to overcome health disparities. One study analyzed minority patients with aggressive non-Hodgkin B-cell lymphoma, who often have poorer outcomes compared with white people. “ ere was thought in the medical community that there might be a genetic rationale,”
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BRIEF HISTORY OF ONCOLOGY PATIENT NAVIGATION
From screening through survivorship, cancer patient navigation removes barriers and boosts care.
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The American Cancer Society (ACS) releases a report on challenges to reducing cancer survival disparities among poor people.
Harold P. Freeman, MD, with ACS support, starts the QDWLRQōVƓUVW patient navigation program at the Harlem Hospital Center. “No person with cancer should have to spend PRUHWLPHƓJKWLQJ their way through the cancer care system than ƓJKWLQJWKH disease,” he writes.
Within medical institutions, the people trained in navigation are often social workers or nurses. Social workers are already trained to provide resources and support, so training them to be navigators makes good sense. Nurse navigators in particular bring more clinical expertise. “Nurse navigators can focus on clinical aspects to make sure the patient’s care is coordinated so that they get
Linda Burhansstipanov, founder of the Native American Cancer Research Corp, launches the Native Sisters Program to support patients across the cancer continuum.
The President’s Cancer Panel recommends funding to support communitybased patient navigator programs. Private foundations contribute.
The ACS ODXQFKHVLWVƓUVW patient navigator program. A national law authorizes federal grants to hire and train navigators, and the National Cancer Institute (NCI) begins a ƓYH\HDUVWXG\ of effectiveness at eight sites.
Freeman launches the Harold P. Freeman Patient Navigation Institute to train patient navigators.
expedited treatment,” Blackley says.
“I call her an angel,” says Mary Rasmussen, 74, a caterer in Charlotte, describing Delois DeShazo, RN, the oncology nurse navigator who helped her through her breast cancer treatment in 2018. She underwent almost a year of treatment—chemotherapy, radiation, then lumpectomy surgery, followed by reconstructive surgery; she is now on adjuvant medication. She met her navigator at her rst meeting with the surgeon. “ at rst day, Delois came over, held my hand, gave me a hug and said, ‘Don’t worry, we are going to get through this.’ She gave me her email, cell phone number, told me to call anytime.”
DeShazo worked with Rasmussen’s occupational therapist to help her overcome insurance issues in order to obtain a “bubble suit” to treat the lymphedema—swelling in the body—caused by lymph node removal. One time, after being hospitalized, Rasmussen experienced problems with her post-surgical draining tube. She called her navigator at two in the morning and left a message. “I said, ‘It’s not an emergency. Call me in the morning.’ I hung up, and 30 seconds later, my phone is ringing. I said, ‘Do you not sleep?’ She said, ‘When my patients need me, I’m there. I have a direct line to the whole cancer sta , so I can get an answer for you immediately.’”
EXPANDING REACH
While recognition of the bene t and e ectiveness of patient navigation is growing among cancer hospitals, insurance companies and government, “only a small minority
of hospitals across the country have navigators dedicated to assisting the cancer patients with the greatest need—it usually just falls to the care team,” says Hoehn, who is helping to set up a Cleveland-wide navigator network and demonstrating its cost-e ectiveness.
ere’s a strong national movement to expand oncology navigation. Beginning in January 2024, Medicare provided speci c codes to allow reimbursement; a few states have extended codes for Medicaid too. In March 2024, the Biden administration’s Cancer Moonshot program announced that seven major health insurance companies will pay for navigation services, and 40 comprehensive cancer centers and community oncology practices have implemented the new codes.
“Once Medicare starts covering a service or bene t, it’s more routine, and Medicaid and commercial insurance start reimbursing more routinely as well,” says Dwyer. Less reliance on grants, which are usually time-limited, means more permanent hires, better wages and more sustainable programs. But Dwyer believes much more work is needed to make navigation universally available, especially for the underserved individuals for whom it offers the most dramatic bene ts, many times outside of clinical settings. She’s concerned that better-funded cancer institutions may bene t most from the new reimbursement opportunities because they already have the sta , while smaller community-based cancer centers with the greatest need may not. “We don’t have enough resources for navigation for everyone,” she says. “While we’re getting there, we can’t lose the focus on equity.” Q
The Academy of Oncology Nurse Navigators (AONN) forms; in 2013, it changes its name to the Academy of Oncology Nurse & Patient Navigators (AONN+) in recognition of the contribution on nonclinical navigators.
The Affordable Care Act establishes a navigator program to help enrollment and extends the national patient navigator program.
The results of the NCI study initiated in 2005 show that patient navigation “shortens the critical time from DEQRUPDOƓQGLQJVWR diagnosis and treatment in poor populations and also increases the number of people coming to a center for screening,” writes Freeman. The Commission on Cancer releases accreditation standards for patient navigation, establishing it as a standard of care.
The Centers for Medicare and Medicaid Innovation releases a cancer care model that includes patient navigation as a required component. AONN+ launches FHUWLƓFDWLRQIRU both oncology nurse navigators and oncology patient navigators.
The National Navigation Roundtable launches to improve access to quality care through patient navigation.
Medicare provides VSHFLƓFFRGHVWRDOORZ reimbursement for oncology navigation. The Biden administration’s Cancer Moonshot initiative announces that seven major health insurance companies will pay for navigation services, and 40 comprehensive cancer cancers and community oncology practices begin using new codes for reimbursement.
George Valentine lives with CLL.
&DQFHUDQG Quality of Life
After living with chronic lymphocytic leukemia for over 22 years, George Valentine shares his experiences and wisdom.
BY ANY MEASURE, GEORGE VALENTINE’S LIFE WAS ”going well,” as he described it, in 2002. Originally from Philadelphia, he was living in Arlington, Texas, working in the information technology sector, overseeing hundreds of people and enjoying family life with a wife and college-age daughter. He turned 50 that year and went to see a doctor for a regular physical. “The doctor called and said, ‘I see something I don’t like,’” Valentine recalls. “So I went in for another lab test, and DGD\RUVRODWHUKHFDOOHGPHLQWRKLVRIƓFHDQGVDLGŌ,KDYH some bad news. You have chronic lymphocytic leukemia [CLL].’ I was like, ‘What does that mean?’ He said, ‘We need to send you to a specialist. I don’t want to spend too much time focused on what it means. But it’s chronic, so it’s better than some of the more severe [acute] versions of leukemia.’”
Valentine saw specialists at MD Anderson Cancer Center LQ+RXVWRQZKRFRQƓUPHGWKHGLDJQRVLVDQGDJUHHGWKDW his slow-progressing leukemia, a cancer of blood cells and
blood-forming stem cells in bone marrow, didn’t need to be treated right away. He began a period of active monitoring, commonly referred to as “watch and wait,” that lasted about two years.
Over nearly two decades, Valentine, who now lives in Irving, underwent several different treatments, including chemotherapy and monoclonal antibodies given as infusions and his current targeted therapy, taken as a pill twice a day.
He has become an advocate, working to improve access to health care through the PAN Foundation [formerly the Patient Access Network Foundation] and educating others about CLL through the Leukemia & Lymphoma Society. Cancer Health spoke with him for the latest installment of our Can Heal column— the empowering phrase “Can Heal” is right there in the title. After more than 22 years with CLL, Valentine, 73, has much insight to offer about treatment plans, advocacy, quality of life and more.
Tell us about your treatment
H[SHULHQFHV:KHQ\RXƓUVWVWDUWHG were you having health issues?
The only reason I knew [it was time to start] was because of the labs. Back in those times—there were things done 20 years ago that you wouldn’t do today—to start treatment, they gave you multiple doses of chemotherapy. It ZDVGHVLJQHGWRFRPSOHWHO\ŴXVK\RXU system of the blood cells in your body, including the bad ones. Then your body starts producing new ones. In that process, they give you antibiotics because \RXKDYHQRLQIHFWLRQƓJKWLQJDELOLW\ at that time. That went on periodically, then they gave me [monoclonal antibody infusions]. Keep in mind that I’m working during this whole process.
What I determined over time was that this whole thing comes down to quality of life. I decided this is not the quality of
COURTESY OF GEORGE VALENTINE
IF YOU HAVE CLL, LET CALQUENCE
Not an actual patient.
Important Product Information
AND YOU CAN FOCUS ON THE THINGS YOU’RE LOVING.
CALQUENCE is a prescription oral treatment for adults with chronic lymphocytic leukemia or small lymphocytic lymphoma. May 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
• 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 may cause serious side effects, including:
• Serious infections can happen during treatment with CALQUENCE and may lead to death. Your healthcare provider may prescribe certain medicines if you have an increased risk of getting infections. Tell your healthcare provider right away if you have any signs or symptoms of an infection, including fever, chills, or flu-like symptoms.
• Bleeding problems (hemorrhage) can happen during treatment with CALQUENCE and can be serious and may lead to death. Your risk of bleeding may increase if you are also taking a blood thinner medicine. Tell your healthcare provider if you have any signs or symptoms of bleeding, including: blood in your stools or black stools (looks like tar), pink or brown urine, unexpected bleeding, or bleeding that is severe or you cannot control, vomit blood or vomit that looks like coffee grounds, cough up blood or blood clots, dizziness, weakness, confusion, changes in your speech, headache that lasts a long time, or bruising or red or purple skin marks.
• Decrease in blood cell counts. Decreased blood counts (white blood cells, platelets, and red blood cells) are common with CALQUENCE, but can also be severe. Your healthcare provider should do blood tests to check your blood counts regularly during treatment with CALQUENCE.
• Second primary cancers. New cancers have happened in people during treatment with CALQUENCE, including cancers of the skin or other organs. Your healthcare provider will check you for skin cancers during treatment with CALQUENCE. Use sun protection when you are outside in sunlight.
• Heart rhythm problems (cardiac arrhythmias) have happened in people treated with CALQUENCE, which may 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 can happen during treatment with CALQUENCE, which may 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: headache, diarrhea, muscle and joint pain, upper respiratory tract infection, and bruising.
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.
life I want. Around 2014, I went to my doctor and said, “I can’t come in here every month or every two weeks for four hours of treatment because I’m working and need to work to take care of my family. I need a better option.” I changed doctors, and the new doctors said, “George, there’s a new drug out there—it’s basically a pill you take twice a day.” I said, “Let’s do that.” After a number of years, it failed, then the doctors moved me to the current drug I’m on.
You continued working throughout this process. Does that mean you handled the cancer and various treatments well?
Everybody that gets CLL is unique, and their body’s ability to handle treatment is different. I’ve been on calls with 30 or 50 people with CLL and not one of us has the same version of side effects. I had really bad allergies [before CLL] and had to get shots once a week, but the day they started treating me for leukemia, my allergies went away. I can roll around in the grass and get nothing. The allergist was really shocked. With me, whenever I got infusions [for CLL], I was at high risk for infections—colds DQGŴXVWKLQJVOLNHWKDW7KHUH was a small amount of being tired right after an infusion, but it didn’t affect my ability to go to work and do my job.
say, “I was just diagnosed with leukemia. How do I tell my family? Who do I tell?” I can take them step-by-step through my experience. God has allowed me to live all these years with leukemia. Why am I here? I realized that there is power in sharing my story with other people who are just diagnosed and in helping some of them access treatment, including clinical trials.
What advice would you offer to someone who is newly diagnosed with cancer?
I tell people this is a journey, and you’re going to need a team of people on this journey. My wife, who is my caregiver, is part of that team. When [friends and family] learn you have cancer, they’ll ask what they can do. Tell them, “I need you to go to my doctors with me. I need you to write down these questions and be sure they get asked and then write down what the doctor says.” If you go by yourself, by the time you get out to your car, you won’t remember what the doctor said.
YOU’RE GOING TO NEED A TEAM OF PEOPLE ON THIS JOURNEY.
But that’s a story as well. One of the things that happens at some companies if you get leukemia is they decide, “We need to take care of George. We need to take away some of his responsibilities so he can focus on his leukemia.” Which seems like a positive, but it’s actually a negative. My quality of life is that I want to keep working. Once I told the company I had leukemia, all of my [career] progression forward stopped and actually went in reverse.
You’re now retired but remain active through advocacy work. Do you think that helps in your healing process?
Yes, it does. People will get on [a Zoom call] and
The pharmacist is a key person on the team. My pharmacist is the one person who knows the 20 pills I take and whether they will play nice with one another—for example, will something for my leukemia interact with a diabetes med? Be sure all your doctors are on the same page and communicate. I have 10 doctors. All are at the University of Texas at Dallas. They share test UHVXOWVDQGVXPPDU\QRWHV,WōVDKXJHEHQHƓW, don’t have to bring test results from doctor to doctor. I don’t want to be the middleman.
This all ties in to quality of life. You have to decide what’s important to you and what kind of life you want to live. If a doctor said, “George, I’ve got a cure for leukemia, but with this cure, you can never leave the house and interact with other people.” I’d say, “No, thanks. I’ll keep doing what I’m doing.” I live near a lake. I want to be able to go out to the lake and to visit family and go to a ball game and do things that other people do. Q
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An interview with Lisa Simms Booth, executive director at the Smith Center for Healing and the Arts, a Washington, DC–based nonprofit health, education and arts organization
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if you aren’t really realizing how much the feelings may be buried.
We have innate creativity that is often squashed when we are little kids. Doing creative activities taps into a reservoir of inner peace. We know that it reduces stress. There is something very meditative, very calming about LWVR\RXƓQG\RXUVHOILQDPXFK more relaxed frame of mind. People tell us that when they’ve been in pain or some discomfort, working on a project takes them to a different place and even lessens the pain they’re feeling. And often, it helps you process things—even
We offer a host of creativity programs that people with cancer can participate in, and they range from writing to painting to poetry to making mosaics to doing photography or knitting or sewing. We offer almost 80 different programs a month. They’re not just in the arts—we also offer psychosocial support. Since the pandemic, we offer both in-person and virtual programs. And they are free or low cost. We don’t want money to be a barrier.
We partner with a lot of hospitals, but arts programs are also burgeoning in many hospitals themselves. The National Organization for Arts and Health is a membership organization of practitioners and people from both the medical and arts communities
who are really trying to further WKLVƓHOG$QGLWōVEHFRPLQJD ƓHOGRIVWXG\$WWKH8QLYHUVLW\ of Florida, for example, you can get a degree in arts and health.
Absolutely. That’s the beauty of the arts. If there’s nothing in the hospital near you and coming to a program like ours, even virtually, doesn’t really work for you, just doing something where you bring the arts into your ZRUOG,WKLQNZRXOGEHEHQHƓcial. You don’t have to make a masterpiece. People would be quite surprised at how much better they feel by just partaking in artistic and creative outlets.
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What inspires me is the people who say how much our services have helped them. My own mother had cancer for many years. I think the Smith Center would’ve helped my mother, and it would’ve helped me, because our programs are open to families and caregivers as well. I think a place like the Smith Center would’ve been a godsend, and that’s what keeps me motivated. Q
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Resources for Cervical Cancer
7+(&(59,;,67+(/21*1$552:(1'2)7+(87(586 (womb) that connects the uterus to the vagina. Cervical cancer is one of the most common malignancies in women worldwide; thanks to screening and vaccination, it is also one of the most preventable cancers. In most cases, cervical cancer is caused by human papillomavirus (HPV). HPV vaccinations and early detection and treatment of abnormal cell changes in the cervix can prevent cervical cancer from developing. To reduce cervical cancer risk, doctors recommend vaccination for adolescents and young adults and regular Pap and HPV tests. For more on HPV, see Basics on page 12.
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Combining efforts from the ACS and the American Society of Clinical Psychology, this website offers information about cervical cancer statistics, detection, prevention and treatment. When cervical cancer spreads, it can cause pelvic pain or pain during intercourse. ACS offers pain management resources, including non-opioid treatment plans.
&ƚƧƜƞƫ6ƮƩƩƨƫƭ&ƨƦƦƮƧƢƭƲ cancersupportcommunity.org
CSC is a leader in research on the patient, survivor and caregiver experience, including updated research on cervical cancer, as well as tips on stress, sexual intimacy, pain management and more.
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cdc.gov
The CDC’s National Breast and Cervical Cancer Early Detection Program provides free or lowcost cervical cancer screenings, including Pap and HPV tests, to people who can’t afford them.
Discover more resources: cancerhealth.com/resources
&ƞƫƯƢƯƨƫ cervivor.org
A global community of advocates raising awareness about cervical cancer, Cervivor supports patients and survivors, hosts community events and offers educational materials. Its Cervivor School connects survivors to essential knowledge about HPV and cervical cancer, empowering them to become patient advocates themselves.
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foundationforwomenscancer.org FWC is dedicated to expanding research, education and awareness about gynecologic cancer risk, prevention, early detection and treatment. Its Cervical Cancer Guide offers an overview on cancer symptoms, staging, coping tips and more.
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An excellent source of data on cervical cancer, including prevention, treatment and research, the NCI website also features in-depth information on HPV vaccines.
1ƚƭƢƨƧƚƥ&ƞƫƯƢƜƚƥ&ƚƧƜƞƫ &ƨƚƥƢƭƢƨƧ nccc-online.org
NCCC is dedicated to serving women with or at risk for cervical cancer and HPV-related disease. With thousands of members worldwide and chapters across the United States, NCCC provides free materials about cervical health, information on screening and support for patients and survivors.
Although Black women are more likely to be screened for cervical cancer, they have higher incidence and mortality rates than their white counterparts, according to RSP. The site offers resources and data about this cancer and other issues involving Black women’s reproductive wellness.
6+$5(&ƚƧƜƞƫ6ƮƩƩƨƫƭ sharecancersupport.org
SHARE offers a wide range of programming, including cervical cancer support groups, educational programs, webinars and blogs by patients and survivors.
Your Wellness Plan
Actively map out ways to nourish your mind, body, spirit and more.
A CANCER DIAGNOSIS CAN BE DESTABILIZING, BUT IT CAN ALSO SERVE AS AN opportunity to take stock of your life and actively plan for a healthy future. Striving for wellness requires creating a custom plan that meets your unique physical, psychological, social, spiritual and economic needs and boosts your quality of life. The following suggestions can help you envision a wellness plan WKDWƓWV\RXUFLUFXPVWDQFHV
Take Care of Your Body
“Being physically active, consuming foods that UHŴHFWDKHDOWK\GLHWDU\ pattern and avoiding obesity after completion of cancer treatment improves long-term survival,” concludes the American Cancer Society’s 2022 Nutrition and Physical Activity Guideline for Cancer Survivors. It recommends a diet “rich in a variety of plant foods, such as vegetables, whole fruits, whole grains and beans/legumes, but limited in or not including red and processed meats, sugarsweetened beverages, highly SURFHVVHGIRRGVDQGUHƓQHG grain products.” Consult with your health care team for advice DERXWƓWQHVVSURJUDPVWKDW address your particular needs.
Assemble a Support System
Medical professionals, fellow cancer survivors, family and friends can all help you meet your emotional, psychological, spiritual and intellectual wellness needs. It’s tough to beat the support of a fellowship of people with shared experiences and common goals—whether online or via local community programs. Such a connected
network can help you cope with stress and build healthy, nurturing relationships.
Assess Your Financial Situation
The hard reality is that cancer care costs money. Nearly three quarters of people with cancer are concerned about the cost of health care; indeed, 70% of cancer patients are worried about incurring medical debt due to their care and treatment. Such stress could negatively affect health outcomes. Start by assessing your health insurance coverage. If you don’t have health insurance or don’t qualify for Medicare or Medicaid, experts suggest you explore state-based health insurance marketplaces
WRƓQGDSODQWKDWƓWV\RXUQHHGV You can also search online for ƓQDQFLDODVVLVWDQFHSURJUDPV that can help with insurance premiums and prescription drug costs. Don’t overlook organizations like the HealthWell Foundation and Triage Cancer, which provide educational resources, tools and even funding. Also, talk with members of your health care team—they often NQRZDERXWKRVSLWDOVSHFLƓF programs or local resources.
Challenge Your Brain
Engaging in new activities can help keep your mind sharp and support intellectual wellness. By continually learning, asking questions and participating in new activities— think knitting, cooking, painting or dancing—you’ll exercise your brain, which may help combat possible brain fog from cancer treatment. Or read a book, watch a documentary, take an online class, play a musical instrument, solve puzzles or more.
Explore Your Spiritual Core
Have you ever asked yourself who you are and what your purpose is in life? Cultivating gratitude for what you have and a connection to something greater than yourself—through volunteering, perhaps— is a way to look out-
ZDUGDQGƓQGEDODQFH DQGIXOƓOOPHQW0DQ\SHRSOH with cancer rely on or turn to prayer or other religious practices. Experts advise trying meditation and deep breathing, especially when you feel stressed or anxious. Step outside and tune in to nature, or visit new places and absorb the energy around you. Q
WINTER COMFORTS
Get cozy in winter apparel, set goals with a self-care app and shop for meaningful gifts that give back to cancer research.
Meet your mindfulness goals, track healthy habits and reduce anxiety while caring for a cute feathered friend. The Finch: Self-Care Pet app supports mental health with personalized journal prompts, guided meditations, breathing exercises, medication reminders and more via a FKDUPLQJJDPLƓHGLQWHUIDFH6HW goals as simple as making your bed or taking a walk around your neighborhood; each completed goal earns you points to help your bird grow. Finch makes meeting targets fun and rewarding. Try a one-week free trial, then pay $39.99 annually
The American Cancer Society’s online store features hundreds of quality items, including totes, shirts, drinkware and accessories. Combining style with function, its Winter Clothing Collection will keep you warm and comfortable all season long with must-haves, like the Bella Canvas Hoodie Sweatshirt ($44), made of soft, EUHDWKDEOHŴHHFH$QGZKHWKHU\RXōUHUHOD[ ing at home or enduring lengthy treatment sessions, sip your favorite beverage in style with the 20 oz. Merry and Bright White Tumbler ($23.50), designed to keep drinks hot or cold for hours. Each purchase supports essential research to advance cancer prevention and treatment.
The Elephant in the Room is a one-stop shop for thoughtful handcrafted gifts for those with cancer, health care workers and more. Send someone you love a Hospital Care Package ($63) including aromatherapy skin oil, a pillow and room mist, a handmade luxury notebook and a natural lip balm, or show your appreciation for a kindhearted essential worker by gifting them the “Legend Nurse” Thank <RX*LIW%R[ ($32)
Things Went T*ts Up! ($15.65) by Dearbhaile O’Hare will inspire and comfort any reader affected by cancer. A colOHFWLRQRIUHŴHFtions, poetry and illustrations, the book speaks to the roller coaster of emotions and inner strength needed to live and thrive with cancer. With humor and honesty, O’Hare discusses her personal journey from breast cancer diagnosis to treatment DQGEH\RQG$OOSURƓWVIURPWKH sale of the book go to the Marie Keating Foundation and Purple House cancer charities.
Show a loved one you care by supporting Choose Hope, which GRQDWHVRILWVQHWSURƓWVWR cancer research and has raised almost $1 million since its inception. Its Cancer Care Gift Tote ($85) contains creature comforts like slipper socks, a soft plush blanket, a journal and a water bottle. Browse the Choose Hope site by cancer type for personalized apparel, jewelry, skincare and more. First-time shoppers
Scan this QR code with your smartphone to take this survey at cancerhealth.com/surveys. Or email a photo of your completed survey to website@cancerhealth.com.
IN THE SEARCH FOR A CURE, THEY KNOW EXACTLY WHERE THEY STAND. ON THE SHOULDERS OF GIANTS.
For 75 years, Damon Runyon has provided funding to scientists who bet their careers on high-risk, high-reward hypotheses, concepts, and strategies. In this time, Damon Runyon scientists have advanced cancer research exponentially – because each one builds upon the achievements of those who came before.
As we celebrate this milestone of scientific achievement, we honor the scientists who have contributed to this legacy and continue to carry it forward. With them, we look to the future.
