One patient recounts how his oncology nurse's love for healing helped him on his treatment journey.

Oncology Nurses Have A Love for Healing

There is no approved treatment that targets the KRAS p.G12C mutation that drives some cancers like non-small cell lung cancer. But a recent study shows how the experimental drug sotorasib sparked responses in some patients.

Experimental Treatment Shows Promise for Certain Cases of Advanced NSCLC

In this special hematology focused issue of CURE® we look at all the promising treatments and research for both adults and children with blood cancers.

New Therapies for Adults and Children With Blood Cancers Hold Promise

Forward Momentum, a coalition launched by a biopharmaceutical company and three partners, focuses on the health disparities faced by Black men with prostate cancer.

Coalition to Focus on Health Disparities Black Men with Prostate Cancer Face

Articles

A growing number of treatments are available to men whose prostate cancer has spread and become resistant to hormonal therapy.

Treatments for Men Whose Prostate Cancer Has Spread and Become Resistant to Hormonal Therapy are Growing

New guidance from the Food and Drug Administration recommends that the makers of breast implants include a black-box warning, a patient decision checklist and other information on product labels that will help protect them against a cancer and an autoimmune condition that can arise from use of the devices.

FDA Updates Breast Implant Labeling Recommendations to Help Inform Patients About Dangerous Potential Side Effects

From a new study showing that the iCanQuit smoking cessation app is more likely to work than typical guidelines, to the House unanimously passing the Veteran’s Prostate Cancer Treatment and Research Act, here’s what’s happening in the cancer landscape this week. 

Friday Frontline: Smartphone app encourages smoking cessation, House passes Veteran’s Prostate Cancer Treatment and Research Act, and More

Finding the best care team can make all the difference for patients with diseases like multiple myeloma.

Program Leads Patients With Cancer on ‘The Right Track’

Martha lives in Illinois and was diagnosed with metastatic breast cancer in January 2015. She has a husband and three children, ranging in age from 12 to 18, a dog and a lizard.

I smile when asked about “returning to normal.” So often, we want to return to the status quo — the state that existed before where we are now, even when that “before” may not have been the best place to be.

This is how I think about cancer — the before was good but I was blind to my risk and to what was happening inside my body. So how good was it, really? I get asked, a lot, about how to return to normal while living with cancer. My first thought is that this is not the goal in my life; I don’t want to be returning to the past since I’d rather be looking toward the future.

I’ve found it better to acknowledge what I am now and to add those pieces of my former life that resonate today. I want to be better than I was, in so many ways.

As a person living with cancer and ongoing treatments, I’ve learned how to live with uncertainty in ways that many people don’t experience. My uncertainty centers around how long a drug will keep working and how long I will live once it stops working. It’s about life and death. Making room for this uncertainty, psychologically and emotionally, has been difficult and essential.

Living with years of active cancer treatment, I’ve spent a lot of time drawing upon memories of times when I needed resilience and focus to get (or stay) where I wanted to be. That’s because, for me, living as normal a life as I can has meant being knocked down. A lot. It’s meant fighting my way up a steep learning curve about cancer and my care, putting myself out there to advocate for more research and better patient experiences, shoving down feelings of discomfort in order to be the person I know I can be.

Before cancer, I lost moments of profound joy by not being centered and present in my daily life. My husband would sometimes ask me “If not now, when?” whenever I chose to keep to myself rather than reach out to the people I loved and who also loved me. I keep his question close to my heart these days and remind myself that the joy I want is right here, maybe a little changed — just like my life — but not gone.

Long ago, hope was a vague expression of distant dreams. I still have that kind of hope but my new expressions of hope center around action. I hope for better treatments and I take action to help make that happen. I hope for stronger relationships between doctors and the patients they care for, and I take action to try to improve communication and knowledge. For me, today, hope is a word of action.

I’ve tried to live my life in gratitude, always, though sometimes less well than others. Living with cancer has reinforced the core of my absolute belief in gratitude. The heartbreaking toll of metastatic cancer can hide gratitude momentarily, but it always reappears. I’m not sure my before-cancer self had the capacity for gratitude that I now have for kind people, resourceful doctors, scientific dreamers, and our beautiful world.

So, how do you get back to normal? For me, much of it came from acknowledging the power of gratitude, strength, growth, joy, and hope. These threads are knit tightly together, flexible, frequently changing in importance, able to absorb the hard times and weave those in too, forming an ever-evolving, ever-better normal.

I get asked, a lot, about how to return to normal while living with cancer. I don’t want to be returning to the past since I’d rather be looking toward the future.

How I Learned to Embrace the 'New Me' After Cancer

 Chris Ehring died 11 weeks after learning he had penile cancer. He had been receiving treatment for only five weeks.

His wife, Kinnet Ehring, is left to face the emotional aftermath, and she has responded by reaching out to others to raise awareness about the condition.

Diagnosed in just over 2,000 men in the United States each year, penile cancer is curable in early stages with appropriate treatment, but it’s exceedingly rare, which is why men often don’t recognize it or seek immediate medical care. Many also don’t know that it almost exclusively affects uncircumcised men or that a major risk factor is HPV infection, which can sometimes be prevented with a vaccine. Other known risk factors include chronic inflammation, obesity, HIV/AIDS, tobacco use, UV light treatment for psoriasis and age.

Aside from his age, 73, Chris didn’t have any of those risk factors.

Initially, multiple physicians treated Chris with antibiotics for what they assumed to be an infection, and Kinnet remains upset about how long it took for him to receive an accurate diagnosis: stage 4 penile cancer that had spread to the inguinal lymph nodes in his groin and to his thorax. She also believes that treatment should have been started sooner once the condition was determined to be advanced, late-stage cancer.

Kinnet, of West Barnstable, Massachusetts, sat down with CURE® to discuss her late husband’s experience with penile cancer and the need for greater awareness about the disease. Her goal: for other men to learn from Chris’ experience so they can receive prompt diagnosis and treatment.

CURE®: What led up to your husband receiving his diagnosis?

: Chris had had a lot of pain and a burning sensation in his penis, starting around late

December or early January. On Jan. 17, he went to see his primary care physician, and I have some issues with this particular doctor. He did not even examine Chris’ penis. He said he thought it sounded like a urinary tract infection and put him on antibiotics.

Four days later, the doctor called Chris to say, “Good news. It’s not a urinary tract infection.” Chris said, “That’s not good news. Good news would be that it was a urinary tract infection and that this antibiotic would clear it up. Because if it’s not a UTI, then what the heck is it?”

The primary care physician suggested that he call a urologist, but he couldn’t get an appointment until three weeks later. The doctor didn’t call the urologist himself and make an emergency appointment — even though Chris had a history of bladder cancer back in 2004, which he beat. I think every medical care professional should always think to him or herself: “This could be cancer.” That should be the default position.

Part of the problem is that penile cancer is an orphan malignancy because it affects fewer than 200,000 people in the United States, so many people have never even heard of it.

Chris saw the urologist for the first time on Feb. 12, and by then his penis had gotten more ulcerated. And so what did the urologist do? Put him on a higher and stronger dose of antibiotics and told him to come back the following Tuesday. When there was no improvement, he admitted Chris to St. Elizabeth’s Medical Center in Boston.

Over the next couple of days, their focus remained on some type of infection. Finally, on Friday, Feb. 21, they did a biopsy on him, and it came back positive for squamous cell carcinoma in both his penis and his lymph nodes. A CT scan showed that the cancer had also spread to his chest. He was discharged on Feb. 27 with a plan to go back on March 10 for a PET (positron emission tomography) scan and to meet with a medical oncologist from Dana-Farber Cancer Institute through St. Elizabeth’s satellite location.

The PET scan pretty much confirmed what the CT scan had shown a couple of weeks prior to that.

During the appointments with the medical oncologist and urologist, they said basically the same thing they said before he was discharged from the hospital. The plan was that he was going to start treatment there on March 25, so now we had to wait again. And I was getting really anxious because nothing was being done and the cancer could have been growing.

Because the disease was so advanced, potentially curative surgery to remove part or all of the penis was not an option. Chris’ treatment with radiation five days a week and chemotherapy weekly started on March 25 at Cape Cod Healthcare’s Davenport Mugar Cancer Center and was supposed to end around May 7. Then he was going to take a two-week break before he started his second round of a double dose of chemo with no radiation treatment. We never got to that point. As a matter of fact, he died the day after he was supposed to have received his last radiation treatment.

You’ve said that you don’t feel your husband’s care team gave him the information he needed to choose the best treatment plan. What went wrong?

There was never really any discussion of Chris’ prognosis or objectives. I think, had he known he was going to die so quickly, that he might not have opted for the radiation treatment because it was so incredibly excruciating for him.

Every time I drove him to treatment, which was every morning, I had to make sure I avoided every crack in the road. The railroad tracks were a big challenge. I used to take them very, very slowly, and one time a guy behind me in a pickup truck honked his horn and passed me and flipped me the bird because I was taking too long to go over the railroad tracks. But I had to do that because Chris was in so much pain. It was just a horrible experience for him. I feel so bad that he had to go through that only to be gone.

I’m still at a loss as to why he went so quickly. I’ve asked his oncologist to set up an appointment to meet with me to give me a postmortem as to what happened and why he died so quickly.

What is your advice to others who might have unexplained penile symptoms?

If there’s anything you see on your penis that looks as if its characteristics have changed, such as swelling, changes in color or lesions, go see a doctor, preferably a urologist, immediately. And if the doctor’s opinion is that it’s a UTI, insist that he examine it even if he doesn’t want to. If he doesn’t want to, then he’s in the wrong line of work.

And just be aggressive about self-care. Women give themselves monthly breast examinations; maybe men should 

do the same with their penises. I’ve done a lot of reading on this, and I learned that a lot of men have unnecessarily died from penile cancer because they were too embarrassed to show their penis to a doctor. And that’s just silly.

Again, I also think that every doctor should take this default position with patients who come in complaining of pain: They should all say to themselves, “This could be cancer. Other things cause pain too, but let’s rule out the cancer first.”

Besides speaking with CURE®, what are you doing to help raise awareness about penile cancer?

If you ask the average person if they’ve ever heard of penile cancer, they’ll say, “No, I never even knew you could get cancer there.”


Even some doctors may not know about this condition, so this should be part of continuing medical education. Because the disease doesn’t get enough attention, I started a giving page, and we’ve raised over $5,300 for the 

. My goal is to get to $10,000, and I hope I reach that goal within the year.

I’ve also talked to Dana-Farber’s philanthropic division about organizing an event to raise money and awareness, like maybe a regatta, because my husband was a big racing sailor who was very active in all sorts of regattas throughout his life.

The proceeds will go to Dr. Guru P. Sonpavde, a genitourinary oncologist who directs the bladder cancer program at Dana-Farber, and whom really Chris liked during the one telehealth visit they had. The funds will be used for a two-prong purpose: One is to raise awareness among doctors that penile cancer exists. The other is to investigate the best ways to treat it.

A woman shares her late husband’s journey with advanced penile cancer to help others receive a diagnosis early, when the disease is still highly treatable and even curable. 

While Penile Cancer is Rare, Men Should Be Aware

® asks its readers to share their thoughts with the #CureConnect discussion question. 

This past week, we asked: “How has an oncology nurse helped you on your cancer journey?”

“I had chemo in two different areas for two different cancers. Both teams of nurses were awesome. They were always upbeat and positive — which I am sure was hard at times. They were quick to listen, I mean really listen to me with any concerns, fears or just talk. I could not have made it without them.” – S.M.

“(My nurse) was kind, positive and always asked me if I ran two miles before my weekly chemo drip. I loved telling her, ‘Of course.’ She pushed me to never stop exercising. I’m still exercising and enjoying life.” – J.D.

“I had quite a few, but one named Sami is the (best). I can direct message (DM) her anytime and she responds no matter what. I love her and her personality is so amazing. She is a true hero to see people like me every day and still have a smile on her face and laugh amid craziness. She and my other nurses at Georgia Cancer Specialists in Canton, Georgia deserve medals.” – A.G.

“There are too many to name. They are caring, compassionate and kind. University of Michigan oncology and infusion nurses rock. It takes a special person to be one as each patient’s journey is different. I call them earthly angels.” – D.H.

"All at my center were wonderful. But one was usually my ‘regular.’ She knew and understood my style/personality, and we had a blast. Yes, a blast. I looked forward to chemo day. They are a special breed. I will be forever grateful.” – T-E.A.

“I’m a metastatic breast cancer patient. My oncology nurses have become friends. They are always ready and willing to answer my questions and help with problems. They are the most caring and patient people I’ve ever met.” – Y.S.

“She knew something wasn't right with me even though my cardiology tests (were) normal. She convinced the oncologist to send me to a cardiologist and we found my heart function was extremely low. We stopped chemo and the cardiologist nursed me back to near normal. That was 14 years ago.” – G.A.

“The oncology nurses are what holds everything together. They are the ones who answer your phone call, clear the way to get in for fluids and give the best hugs … back when hugs were allowed.” – M.M-M.

“My nurse has become a friend and we meet up for a catch-up chat and coffee; she held my hand during my biopsies, as well. She is a true angel.” – A.T.

“Oncology nurses are one of the most important parts of your team when you have cancer. The nurses I have had are immeasurable in their care, compassion and focus to getting you feeling comfortable in a time when things are not right.” – V.M.

To read a former patient’s perspective on how oncology nurses have a love for healing, click 

To read how a child’s experience with her oncology nurse has influenced her to want to become a nurse and help other children like her, 

On social media, CURE® recently asked its readers to share how an oncology nurse has helped them on their cancer journey.

How Has an Oncology Nurse Helped You on Your Cancer Journey?

When Brandon Stevenslooks back at his treatment for testicular cancer, he remembers the bright spots in that dark time. With support from his family, friends and hospital volunteers, he was able to stay positive — especially when he was visited by the four-legged members of his care team.

“They had a lot of therapy dogs, mostly labs and golden retrievers. Just seeing a dog in the hospital when you’re going through these treatments cheers you up a lot,” recalls Stevens, who, after receiving his diagnosis shortly after graduating high school, underwent surgery and then chemotherapy in the fall of 2015. He was treated at the UCHealth Cancer Care and Hematology Clinic in Greeley, Colorado.

The next year, grateful to be in remission and studying to become a pilot, Stevens felt inspired to help others in need, just as his supporters had helped him. Remembering the therapy dogs, he started volunteering for Pilots N Paws, a nonprofit organization that transports pets to facilitate their rescue, shelter or adoption. Stevens has earned his private pilot’s license at Kansas State University Polytechnic Campus in Salina, where he is a senior expecting to graduate in the spring with a Bachelor of Science in aeronautical technology and a minor in aviation safety; he participates in the volunteer program on weekends. In fact, he uses his own money to rent planes and fuel them up for the trips, the school has reported.

“Everyone has done so much for me, and I had a lot of exposure to good people who were going out of their way and not being paid to help me, so it’s natural to want to do that. I can’t think of a better way to do it than to give back to the community,” he said. “I can’t imagine living and not (making) some type of contribution to something larger than myself.”

It only took one mission to get Stevens hooked on delivering dogs. “It was through a Husky rescue mission that was sending the dog to a new owner,” he said. “We delivered it to a family, and to see the kids’ eyes light up as they saw the dog — that’s what really sealed the deal for me.”

Stevens feels connected to the organization not only because he has owned dogs, but because he hasn’t forgotten how much the hospital’s therapy dogs helped him through his treatments, especially chemotherapy, which he found both terrifying and draining. “The sheer amount of chemicals that were being put in was overwhelming and scary,” Stevens said. “There’s a lot of uncertainty because you don’t know how you’re going to react or exactly how it’s going to feel.” With chemotherapy scheduled every other week, it turned out that he alternately felt fine — and then terrible.

What most surprised Stevens was the mental fog, or “chemo brain,” that he experienced during treatment.


“I would be out with my family and I couldn’t really comprehend what was going on around me,” he said.


“I just wasn’t there mentally. ... I thought something was wrong with me for a while, because I couldn’t remember some things, and my brain was just a little slower than I remembered it being.”

Although the problem has lingered, he said it has “gotten better over the years with practice and constantly challenging with puzzles. One of my biggest regrets was not going through more academic exercises while I was going through chemotherapy.”

As a college student in the professional pilot program who studies every day and is striving to earn his aviation ratings, “I have to work longer, because it takes longer for the information to stick,” he said. “I require a little more studying than had I not had cancer. It’s really just persistence and constantly sticking through it.”

Still, it’s important to him to find the time to volunteer. In addition to his work for Pilots N Paws, Stevens and some friends are working to create an aviation-related organization to help children who have cancer.


“The big thing for me when I was going through treatment was having something afterwards to look forward to, seeing the light at the end of the tunnel,” he said.


“One way we could help do that is by introducing kids to aviation and visiting kids who are going through really similar situations and talking with them. We really want to start scheduling visits and then eventually working up to introductory flights to get kids’ minds off what’s going on and open up a little bit of happiness there.”

For Stevens, connecting aviation and volunteerism gives meaning to both.

“A lot of times you work so hard on getting a rating (a certification allowing a student to fly a certain type of aircraft) and you start to feel a little selfish,” he said. “You think ‘Why am I doing this?’ I don’t know if I would have had that mindset before I had cancer, but I think a lot of cancer survivors are the same way and want to give back.”

After enjoying visits from therapy dogs during treatment for testicular cancer, a student pilot decides to volunteer to transport pets needing rescue, shelter or adoption. 

After A Positive Experience While Receiving Treatment for Prostate Cancer, Student Pilot Volunteers to Transport Pets in Need

Getting a weekly high dose of chemotherapy for epithelial ovarian cancer did not improve survival outcomes over standard of care for patients with epithelial ovarian cancer, but it was a safe and effective treatment regimen, according to research recently presented at the ESMO Virtual Congress 2020.

“There’s a strong rationale for the evaluation of weekly-dose paclitaxel after settling into the first line of treatment,” Dr. Andrew Clamp, senior lecturer and honorary consultant in medical oncology at the Christie NHS Foundation Trust, said while presenting findings from the ICON8 study.

Study Outcomes For Patients With Epithelial Ovarian Cancer

There were more than 1,500 eligible patients with epithelial ovarian cancer enrolled in the study. They were randomly assigned to one of three treatment arms:

Arm 1: standard chemotherapy consisting of carboplatin AUC5/6 plus paclitaxel 175 mg/m2, both given every three weeks(522 patients)

Arm 2: carboplatin AUC5/6 every three weeks plus paclitaxel 80mg/m2 once a week (523 patients)

Arm 3: carboplatin AUC2 plus paclitaxel 80 mg/m2, both given once a week (521 patients)

Patient characteristics were well balanced among the arms at the start of treatment. The average age of study participants was 62, and 72% had serous disease. Regarding disease stage, 10.5% had stage 1c-2a cancer, 18% had stage 2a-3b and 71% had stage 3c-4. Half (50%) of patients planned delayed primary surgery, while slightly less (48%) underwent immediate primary surgery. Two percent of patients had inoperable disease.

The average overall survival (OS), meaning the total percentage of patients alive on Oct. 1, 2019, was 47.4, 54.1 and 53.4 months in arms 1, 2 and 3, respectively. There were 319 deaths in arm 1 (61%), 300 deaths in arm 2 (57%) and 304 deaths in arm 3 (58%). The difference in survival was not statistically significant between the dose-dense arm and the other two.

Average time to disease progression was 25, 25.5 and 25.9 months in arms 1, 2 and 3, respectively, again showing no statistically significant difference between the arms.

However, the high-dose regimen did have an acceptable side-effect profile, Clamp explained. The side effects associated with the regimens have not changed since researchers analyzed them in 2017.

“The two weekly treatment arms were associated with an increased incidence of any grade 3 or 4 events during treatment,” predominantly driven by neutropenia, a blood count deficiency, Clamp said. “Reassuringly, incidence of febrile neutropenia was low in all three treatment arms, and we did not see any increase of grade 2 or more sensory neuropathy (tingling or numbness in the extremities) in the two weekly dose-dense paclitaxel-containing regimens.”

While there was no major difference in patient characteristics between the treatment groups, Clamp explained that further research will look into more distinct subgroups of patients with ovarian cancer to see if the dose-dense regimen has different survival rates.

“Other further hypothesis-generating analyses are underway in our delayed primary surgery cohort to determine if there is a subgroup of patients who may benefit with the more dense approach,” Clamp said.

A weekly high dose of chemotherapy did not improve survival for patients with epithelial ovarian cancer, though the treatment regimen was effective and well-tolerated. 

Dose-Dense Chemo Regimen No Better Than Standard of Care for Epithelial Ovarian Cancer

As well as being a cancer blogger, Laura Yeager is a religious essayist and a mental health blogger. A graduate of The Writers’ Workshop at The University of Iowa, she teaches writing at Kent State University and Gotham Writers’ Workshop. Laura survived cancer twice.

I was attempting not to think about the possibility of more cancer, but a cleaning spree during the pandemic made it hard to ignore.

For two months, I went about my life without my breast prosthesis. I had lost it, and my insurance paid for only one a year. It really didn’t matter, because my special cancer bras had firm cups, and when I wore them, I hardly needed the little prosthesis that fit on the one side of my bra. I looked fine. Plus, this was during the pandemic, and everyone had a pass in the “looks” department. My prosthesis was simply gone, and I thought I’d never find it again.

A key aspect about blogging about your cancer life is that you “sign” an unwritten contract to be honest. For this reason, I am going to admit that I am a cancer survivor slob. I’m messy. So, it will come as no surprise to you that I hadn’t decluttered our bedroom since the pandemic hit. That was in March, in case you forgot. Our bedroom, the one that I share with my dear husband who has suffered through two bouts of my cancer with me, was a bit nest-like. In fact, I liked to call it “the rat’s nest.” Piles of clothes sat on the floor. My sock basket was overflowing with unmatched socks. Good dresses and suits had slipped off the hangers in the closet and were lying on the ground. A pile of magazines lay next to my bed, where I’d tossed each one after I’d finished reading it.

But then, something changed. Recently, I went back to teaching writing at the local university, albeit remotely, and something about that activity interrupted the malaise I’d felt since COVID-19 began. Suddenly, I felt like cleaning. I couldn’t possibly do it in the daytime, so at about 8:30 on a Friday night, I tackled my mess.

In my cleaning that night, I found so many things that I hadn’t seen in six months. I found my burgundy, long-sleeved blouse with the bell sleeves; I found my nightgown that said, “Due to unfortunate circumstances, I am awake.” And, wait for it: I found my breast prosthesis. It was under a pile of clothing next to my dresser.

I was glad to have it back. I wore it then. It made me feel more put together and respectable.

However, it was hard to ignore the fact that, underneath it, was a bright purple lesion that my oncologist was following. I’d had the ugly spot for two weeks. She wanted me to inform her on Tuesday if it was gone. If it hadn’t disappeared, she was going to biopsy it.

It was probably nothing. I’d had so many false alarms that I was not worried about this one. I felt a bit like a cat with nine lives — a cat in a prosthesis who was hoping she had one or two of those lives left.

One week later, the saga continued: they wanted to biopsy the lesion.

I asked my oncologist’s assistant what the lesion looked like, and she said, “It looks like a pimple, but it’s purple.”

“No, we investigate unusual lesions on folks who’ve had cancer issues before. It’s better to be safe than sorry.”

So, the punch biopsy was Thursday, and there were more days of uncertainty ahead.

The biopsy went swimmingly. It didn’t even hurt. My mother had been watching Mass on television and praying for me, and we were convinced this was why I had no pain.

At that point, I had a couple of stitches in my breast. Those would come out in about a week, but I would learn my fate in the next few days. I was not too stressed, just extra tired. I’d feel much better when I knew definitively that the cancer hadn’t come back.

There was a lot to do to keep my mind off cancer. We celebrated my son’s 16th birthday. I received a set of 38 papers to grade. I taught remote classes on Mondays and Wednesdays, signing on happily, as if nothing was happening. I wondered if I would need to quit teaching if I got cancer again, cancer for the third time.

Can you say “nightmare?” Did I have cancer? Didn’t I have cancer? I couldn’t get through to the people at the breast cancer center to tell me what was going on. It was 10:00 a.m. on the day I expected results, and they were still not picking up their phone. I kept getting their answering service. Finally, an operator took pity on me and transferred me to a secretary who was privy to my information. She checked my file. “No, still in process,” she said. It looked like I had to wait another day.

The next day, I called again and got the answering service. It was 9:10 a.m. But the operator finally figured out the problem. I was calling the answering service phone number, not the number of the cancer center. She gave me the right number, and I quickly dialed it. I reached Karen, the woman with the info. She checked my file again. “Benign,” she said. “It’s a benign inclusion cyst.”

I went thrift shopping to celebrate, picking up a SpongeBob Christmas ornament for my kid and a pair of shoes for my mom. As I was driving home, my oncologist called, all bubbly and happy. “I’ve got good news,” she said. I hated to tell her she was a little late. “It’s a benign inclusion cyst.”

“I talked to Karen a few minutes ago,” I said. “But this is great news!” I was trying to sound as elated as my doctor, but I’d had too many near-cancer misses, and this was just another one to add to my list. “Thanks for letting me know, Mary.”

“We’ll see you soon to remove the stitches,” she said.

Driving home, the sky did look a bit brighter, and somehow I was not as weary as I had been.

For one survivor, finding a lost breast prosthesis coincided with another cancer scare. 

Clearing Away Clutter — and the Fear of Another Cancer

As CEO of Myovant Sciences, the biopharmaceutical company developing the novel hormonal treatment relugolix for men with advanced prostate cancer, Seely knows that the disease occurs more often in Black men than it does in White men, killing them at a higher rate.

She also knows that the COVID-19 pandemic has created barriers for all men with prostate cancer because social distancing has closed many of the places they go for information and support. Compounding this problem is the fact that COVID-19 and its complications have disproportionately affected the Black community.

For those reasons, Myovant Sciences teamed up with three other organizations to form Forward Momentum, a men’s health coalition with the goal of improving the lives of patients with prostate cancer.

“Our men’s health program is really focused on health disparities and, in particular, African American men,” Seely said. “Oftentimes, they’re not adequately studied, they’re not adequately researched, and they have worse outcomes or more aggressive prostate cancer, but a lot of that is because they don’t have the same access to care and the same awareness, or they come in later for treatment. We’re trying to get them much more involved in research, so we get more information about them — ideally, so they get better health care.”

Myovant’s collaborators are BlackDoctor.org, a consumer website that shares health and wellness news with the Black community and helps readers find doctors who are likely to be culturally sensitive based on interviews or the populations they treat; patient advocacy group Movember, which is dedicated to reducing the rate of premature death among men from prostate cancer, testicular cancer and suicide; and Evidation Health, which conducts research on inventive methods of capturing, quantifying and analyzing health data.

An initial project will study the effects of the COVID-19 pandemic in a group of people representative of the racial makeup of America and the men affected by prostate cancer. The COVID-19 Experience study, conducted in collaboration with Mount Sinai’s Icahn School of Medicine and the New York City Department of Health and Mental Hygiene, will measure the effects of the pandemic on men’s mental health over the course of five months.

BlackDoctor.org and Evidation Health also are including a focus on men with prostate cancer
in the study to measure how these patients are coping with the pandemic’s effects. The study’s results will be shared so that the public understands how the pandemic is affecting diverse people across the United States.

Men can check their eligibility for the study, and sign up, at forwardmomentum.com.

“Representation truly matters in studies of all kinds,” Christine Lemke, president and co-founder of Evidation Health, said. “It’s especially critical for diverse voices to be heard and counted given the disproportionate impact of COVID-19 on communities of color. We’ve designed our study to lower the barriers to participation and capture our collective lived experience of the pandemic.”

Simultaneously, the coalition will work to develop digital tools that empower men to better understand and manage their prostate cancer journeys, including their mental and physical health. This will be accomplished through Movember’s True North website (truenth.org/en-us), which provides information and resources to improve the quality of life and care for men with prostate cancer and their families. Improving access to accurate tools for tracking mental and
physical health, such as wearables, will be part of this effort, as well as learning more about the healthcare-related challenges and opportunities for men during the COVID-19 pandemic.

“Our True North platform is designed to help men navigate their prostate cancer journey, beyond the cancer itself,” said Sam Gledhill, global director of digital health at Movember. “We

are committed to creating innovative tools and resources that can help men track their health and talk about their experiences with the disease, which can impact all dimensions of their lives. We are confident that through partnership we can accelerate this mission.”

Those concerns dovetail with Myovant’s motivation for starting the coalition.

“We are a life sciences company, but it’s very important to us to actually engage with the communities that we serve to help elevate health care,” Seely said. “We like to do this
in what we hope are creative and new ways, and to bring together different organizations that approach problems from very different perspectives to make a major impact in health care. It’s so important to us because there are many who are getting left behind and don’t have access to care.”

The ultimate goal is “to educate the patient and get him back in the center of the conversation,” she said, “so that he is comfortable talking about these problems and getting the help from a health care provider that he needs.”

But when dealing with an underserved group of patients, securing participation can be easier said than done, and it will be up to BlackDoctor.org to pave the way. CEO Reggie Ware is thinking about how to meet that challenge as his organization takes on the task of recruiting patients for the COVID-19 Experience study.

“The patient journey is different for our audience,” Ware said. “The biggest difference is the question of: ‘Can we trust the doctor, or not?’ The other piece that’s really big is that we did a study on our site, and it showed that only 10% of our audience feel that they will be treated fairly in the health care system. If a person doesn’t feel that they’re going to get a positive outcome, they’re less likely to go to the doctor.”

Distrust of the health system among Black patients dates in part back to the 1932-1972 study of untreated syphilis in black men, conducted by the U.S. Public Health Service and the Tuskegee Institute, Ware said. Participating men were not given the opportunity to provide informed consent or given adequate treatment to cure their illness, even when penicillin became the standard of care in 1947, according to the Centers for Disease Control and Prevention.

“I’ve never run into a Black person who didn’t know about the Tuskegee experiment,” Ware said.

That has had a chilling effect on Black participation in clinical trials, he said, and is something Forward Momentum is committed to overcoming as it recruits men to be part of its study.

“Oftentimes, when there’s research done across the country, there’s super-low representation of our audience — Black or brown people — and so we’re recruiting minorities for the study,” Ware said. “This is going to be one of the first times in the country’s history that there’s a group of patients in a study who are representative of what this country looks like.”

Seely said she has high hopes that Black patients will participate because the study will seek information rather than offering medical care. She expects the project to be a good way to create comfort with the trial process. Along the way, researchers are likely to learn that members of the Black community have had some concerns in common during the COVID-19 pandemic, Ware said.


Relatively few Black people have jobs that allow them to work from home, he said, “so our message isn’t ‘Work from home,’ but ‘How do you stay safe when you still have to go to work every day?’”

He added that, based on recent research by BlackDoctor. org, 50% of the organization’s audience members expect to refuse a COVID-19 vaccine, while another 20% will have serious reservations about being vaccinated. “We’re brainstorming ways to turn that around,” he said.

Ware praised Myovant and Seely for putting the coalition together.

“They understand that if you bring people to the table and you have meaningful conversations, then it’s going to go well,” he said, “and people are going to look at you differently than the rest of the market, which pretty much just takes your existence for granted. They’re a beacon of light in an industry that I think could use some light.”

He added that, “Once we get everybody to take the vaccine, I think that there are going to be some pretty powerful changes and opportunities for us to come together and really work on health equity and health disparities and really afford some meaningful partnership. I’m hoping that this becomes the first of many partnerships that are going to help people manage their lives.”

Hi, my name is Hallie Bea Barnard. I have been sick with Diamond-Blackfan anemia my whole life, waiting for my bone marrow match, and more recently found out I have cancer in my thighbone.

Last November, I was admitted to the Cook Children’s Health Care System (don’t worry — they don’t really cook children!) for my bone marrow transplant. Before I was admitted, I told my bone marrow transplant doctor, Dr. (Gretchen) Eames, that I wanted to grow up and become a doctor but that I didn’t know if I could do it, because I don’t have a good bedside manner. 

When my brother fell off the stool at our house, there was so much blood, I told him he was going to die. But Dr. Eames said that I would meet so many doctors and nurses, learn from them, and take what I liked the most from each of them. She was right.

I spent 60 days in isolation. I had only my mom, dad, granny, and aunts Micki and Brandi to visit me. The doctors and nurses who worked with me became my friends and family. My most favorite nurse is McKenzie Siegmund, B.S.N., RN. She is nice, beautiful, smart and funny. But what I really like is that she is my friend, and she listens to me and helps me. 

When I got my chemotherapy, I had really bad mucositis and I couldn’t swallow at all. I had an NG (nasogastric) tube placed for 30 days because I couldn’t eat. Nurse McKenzie told me that she believed in me so much and knew that I could do it.

She taught me how to swallow. She encouraged me to be my best and try my hardest, and she believed in me so much that I started to believe in myself. I don’t want to be a doctor anymore; I want to be a nurse — a nurse just like McKenzie, so I can help children who are sick and I can believe in them the way she believed in me. I also think that nurses should get paid more than doctors, but that is a different essay.

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When we meet someone for the first time, the encounter has the power and visual equivalent of a poem, a painting or a song. Life is full of these events that seem random. Instead, they are highly symbolic and meaningful.

Just as a river’s confluences, life’s confluences happen in everyone’s life traveling from some strange places, moving constantly and bumping into our side. As the years pass, they keep reproducing and taking forms of encounters, coincidences or occurrences. I have been blessed with these wonderful invisible connections; we are all spiritually linked.

I have been snowed under with cancer for many years. Consciously, I avoided talking “about it”. Later, when I intended to convey my feelings, my mind was limited to deep brown somber holes. Despite trying to connect with others, my melancholy prevailed.

The liberation came when I had an enlightened encounter with Pamela Worrell-Black, a superb social worker with Fairfax Inova Hospital, who begged me to attend a free retreat offered by a nonprofit organization for breast cancer survivors called Casting for Recovery. I bluntly rejected the idea because I was determined to leave behind everything that had to do with cancer.

However, Pamela’s persuasion was stronger than my rebuff. She described the positive effects of that retreat. Finally, I accepted that someone from the organization would call me and then my second marvelous encounter emerged … enter Carol Stevenson. She is one of the sweetest and kindest volunteer-leaders of Casting for Recovery. Carol — who is also a survivor — talked to me for an hour and a half on the phone. She was so caring and compassionate, and I treasured the loving things that she confessed to me.

It all started on a glorious weekend in a locality appropriately called "A Place Apart"; Shrine Mont was formerly a hotel that dates to the 19th Century and now is retreat and conference center located in Orkney Springs, Virginia. The mountains were waiting with undisturbed silence.

I visited this idyllic place supposedly to infuse my dreams, heal my soul and learn how to fly fish, a therapeutic exercise that would help to minimize the effects of the radiation and chemotherapy received and to prevent and protect from lymphedema, a side effect of breast cancer surgery.

We were just 14 women with a variety of concerns, feelings, reactions, and resentments. To belong to this group, you don’t need a special education or a doctorate. You did not need to have an extraordinary talent nor speak a second language. You could be fat, tall, have curly hair. You could be tan, yellow, Black or white. It did not matter to have a domineering personality or be timid as a bird abandoned in the snow. Here, money or recommendations did not count. The only creepy common denominator was having suffered from breast cancer.

At the retreat center, the discussions were very informal. We had a ritual space near the chimney where each one of us guided by counselors redefined our illness, shaped our hopes and, most importantly, strengthened our connections and humanness. Gradually and slowly, we gave ourselves permission to glimpse into our inner strata.

The group (my first ever) ignited great personal transformation. I did a great deal of confessions. I was forever talking; I could not stop telling happy stories and cracking jokes. I was singing and dancing. I reverted into the person that I used to be. Finally, I was able to reconcile with my younger self, the one that left Chile — the same soul that escaped to America because she could not handle the pain of losing her mother to cancer at age of 49. Now, I know that geographical therapy never works.

During the healing sessions, my mind was filled with restorative thoughts and my quest was expanded. It was an incredible experience that enhanced my life. It taught me that individuals, no matter where they are coming from, are universally connected by love, strength, empathy and spirituality.

I had the privilege of being assigned the experienced river guide, Phil Gay, a master casting instructor that has lead CEOs on fishing excursions to some of the most enthralling rivers in the world.

During my training, Phil, instructed me to watch a group of fish that gathered around the one I had caught with his aid. Utterly astonished, I discovered an entire underwater world of fish bonding. The dynamic of camaraderie was developing just before my eyes; a group of fish surrounded the “unfortunate captive” rushing to his side like sharing perhaps some sort of pain or conveying messages. But even more remarkable was this kind of interspecies attachment — a sort of tacit comprehension, a demonstration of solidarity proper of human beings. They narrowed the circle around him soundless and paused. They seemed to understand what was happening and their conduct struck a poignant chord with me as I visualized a funeral.

Attending this healing retreat gave me a profound emotional perspective with a chance of rediscovery. I sensed a deep passion for life; I felt liberated and pampered.

However, in communion with the valuable lived experience and seeking a meaning to all of this, I believe the most outstanding lesson of this journey was the parallel of the social and emotional affiliation between our group of courageous women and the amazing collective cohesion detected amidst the school of fish.

Nora Massignotti-Cortese, is a journalist, artist and workshop facilitator. She can be reached at bertognott@aol.com

Talking about cancer can be a great burden but sharing one’s story can be liberating. Even if you share it while fishing. 

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