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Dr. Douglas B. Johnson is a physician-scientist and professor of medicine in the Division of Hematology/Oncology at Vanderbilt University Medical Center, where he leads the melanoma clinical research program, located in Nashville, Tennessee.

Immune therapy is generally safer than chemotherapy, allowing more patients with melanoma and other conditions like heart or lung issues receive treatment.

Immune Therapy Expands Melanoma Treatment to More Patients 

A message I recently received from my personal health portal rubbed me the wrong way. I do not know whether it came from a robot with a name or a human with a robot-like personality, but I wrote back that I, a breast cancer survivor, was never delinquent in scheduling annual mammograms.

The message began, “Hi Felicia, Breast cancer screenings save lives! If you're due for a mammogram, you can schedule it quickly and easily right through MyChart. If you've already had your mammogram this year, please let us know or upload a copy to MyChart so we can keep your record up to date.”

It continued: “This message was sent as part of a routine outreach to help keep you on track with preventive care. If you have any questions or concerns, feel free to reply to this message — we’re here to help! Thank you for taking care of your health.”

“Thank you for taking care of your health” can be a good reminder. It can also sound passive aggressive, as in, “You are not taking care of your health and need to try harder.” How much harder can I try? My annual mammogram is scheduled (the order transparent in MyChart). I received a mammogram (MyChart showing results) in December.

Feedback can educate bots and/or humans, so write back when inspired. I wrote, “You can see in [health provider] and MyChart that I had a mammogram. I am a cancer survivor and would not miss one. Please fix your system. Thanks!” The response was short but sweet: “This has been fixed.” Good!

If I were sending an automated message regarding the value of mammograms, though, this is what I would say: “Breast cancer screenings can save lives! We hope you have scheduled or completed your annual mammogram. This message is being shared as part of a routine outreach. If you have any questions or concerns, feel free to reply to this message — we’re here to help! Thank you for taking care of your health.”

Notice how I delete “to help keep you on track with preventive care.” Imagine somebody just diagnosed with breast cancer receiving the breezy message from a bot/human that does not know the recipient’s current situation. Plus, a mammogram can be preventive but can also be diagnostic, initiating an arduous cancer journey. Additionally, “save” and “can save” have two very different meanings. Mammograms do save lives, but not always.

Despite that clumsy message, MyChart is a handy resource. I also recommend following advice from Breastcancer.org: “Keep copies of all your test results. As you receive each new test result, it’s a good idea to get into the habit of saving your own copy. Develop a system that works for you for saving a complete set of all your test results and medical records in one place, whether that’s a digital folder or a file on a shelf. Having your own complete set of records can make managing your care easier, including getting second opinions and applying for a clinical trial.”

A personal medical portal, or patient portal, can be a useful tool. Remember, though, that you, the consumer, can always provide feedback if it needs some tweaking. What would you like a mammogram reminder to look like?

For more news on cancer updates, research and education, don’t forget to 

subscribe to CURE®’s newsletters here.

The message from a personal health portal about mammogram scheduling was perceived as passive-aggressive by a breast cancer survivor. The recipient, who had already scheduled and completed her mammogram, responded to correct the system. The article emphasizes the importance of feedback to improve automated messages and suggests a more sensitive approach to communication. It highlights the dual role of mammograms in both prevention and diagnosis. Additionally, it underscores the value of maintaining personal medical records and encourages feedback to enhance patient portals.

I reflect on how a generic mammogram reminder overlooked my experience as a breast cancer survivor and how thoughtful messaging could make a difference.

Tumor

How Mammogram Reminders Can Be More Thoughtful Following Breast Cancer

I’m a former hospital chaplain, having worked at Good Samaritan Hospital in Phoenix, Arizona, and Hartford Hospital in Hartford, Connecticut.

As I was making my rounds at Hartford Hospital one afternoon, I stopped at the nursing station to ask whether there were any patients I should make a special effort to see. All the nurses said there was one patient with whom they were all having problems. I asked for her room number and immediately went to see her.

I introduced myself as the Protestant hospital chaplain and told her I was there to serve as her advocate. I noticed that her hands were gripping her sheets very tightly around her neck, so I asked whether she was OK. The longer we talked, the more comfortable she began to feel with me. Then she gradually lowered her hands and revealed a teddy bear under the covers. Tears rolled down her cheeks, and she said, “I’m 60 years old, and I thought the doctors and nurses would make fun of me for using a teddy bear for support.”

On that day, I didn’t have a teddy bear with me. Instead, I reached out to hold her hand. I assured her that no one on the hospital staff would belittle her for having a teddy bear. She was so relieved, and I could see the change in her face. The tension left her forehead, and a smile appeared on her face. Then I told her I normally carried a teddy bear with me, and she seemed even more content because she realized that I also valued teddy bears.

I told her it was okay to be an adult who carried a teddy bear and that there was no need for her to feel any shame. Then we had a heart-to-heart discussion, and that conversation changed her whole demeanor.

Afterward, when I went to talk with the staff at the nursing station, they were so pleased I could get through to her because none of them were able to do so. From that time on, she was one of the best patients on the floor. Everyone adored her teddy bear, and some even talked to him. After befriending this patient, the nursing staff nicknamed me “the teddy bear man.”

This is just one example of my many experiences with adults and teddy bears. There are many more stories to tell.

In my work as a chaplain, I was the person who comforted the cancer patients. I often sat in the waiting room with someone who was waiting for their radiation treatments to begin. I held a hand when someone was preparing to receive their chemotherapy treatment. When fear consumed an individual about their diagnosis, I offered a listening ear so they could express their fears. I would often lend my shoulder for a patient to cry on when things fell apart. I was there for the cancer patients and served as an advocate, working with the staff social workers of the hospitals. I also carried a tool, which was quite unusual at this time in the 1980s.

 on July 26, 1984, written by Rosemary Keogh, titled “Just the Bear Facts: A Cuddly Kid’s Toy Tames Adult Tension.” The author interviewed me for this article, and I gave her examples of when I used teddy bears to counsel adults and children. I described that when I counseled patients, a teddy bear could reduce anxiety, especially for patients going through traumatic hospital experiences.

A few years later, I published an article called “The Power of the Teddy Bear,” in the January/February 2000 issue of the leading teddy bear collectible magazine of the 1980s,  

. In the article, I asked the question: Why is the teddy bear so special? What is the power of this stuffed animal? My answer was very simple: The teddy bear is not just a toy. It’s an instrument of love. Its function is to comfort. Its strength is in the power of touch. Its power is truly mystical.

There’s no question that the teddy bear is a spiritual symbol as well. Through its universal appeal, it breaks through language barriers and cultural differences to bring people together. The teddy bear’s influence spans all ages, sexes and races. Everyone can benefit from owning one. In my work as a chaplain, I’ve seen the incredible power of the teddy bear to help both adults and children.

A former hospital chaplain shares experiences of using teddy bears as therapeutic tools to comfort and support patients, particularly those with cancer. The chaplain recounts a memorable encounter with a patient who found solace in a teddy bear, highlighting the bear's role in reducing anxiety and fostering emotional healing. The chaplain emphasizes the teddy bear's universal appeal and its ability to transcend cultural and language barriers, serving as a symbol of love and comfort. The teddy bear's mystical power lies in its capacity to provide emotional support across diverse demographics.

Teddy bears offer emotional comfort and connection for adults with cancer, easing anxiety and fostering trust during treatment.

Teddy Bears Are a Good Therapy for Adults With Cancer 

Those who have close family and friends, we maintain contact as much as possible, meeting for coffee and periodically going out to dinner. Our time together is highly valued. When we can't be together, we talk or message one another.

However, a cancer diagnosis changes things, many things. Doctor's appointments, body scans and blood tests result in more time spent in hospitals and cancer centers and less time at the gym, even for those of us who felt perfectly healthy when diagnosed. We soon experience fatigue, nausea and some pain due to a variety of side effects from the treatment we receive. The changes in day-to-day lives for some, myself included, were massive. And to some degree, our lives would never be the same.

The discrepancy between our former friends’ ongoing lives and the uncertainty we face sometimes makes it hard for a relationship to survive. Many individuals become connected because of what they have in common, but those commonalities no longer exist. A woman may send her co-worker, a new cancer patient, a nice “Thinking of You” card soon after the diagnosis and then begin wondering whether she did the right thing. The “bestie” can’t wait to be back to work but struggles with the side effects of her chemotherapy. She also feels reluctant to text her close friend, wondering whether the folks back at the office want to hear her story, which by then has become a significant part of her life.

Hopefully, the patient/co-worker will soon reach remission, the two friends will be able to share their unique experiences, and the friendship will be saved — but maybe not.

I’ve thought long and hard about the affect of relationships on the cancer journey and vice versa. My three adult daughters were loving and supportive to me, yet, as a mom, I was too upset to share with them the challenging details of my experience. My husband is a kind man, but he went through his own coping issues. I struggled with losing some casual friendships yet felt an increased affinity in others.

Issues in my childhood family resulted in a lack of quality bonds between myself and my siblings; however, I was still disappointed when my sister and brother seemed to have no concept that I was suffering from more than a bad cold. How I wished we were close, especially at that challenging time in my life!

A close friend of mine, from our church support group, who seemed to have a wonderful supportive family of origin, made a comment about her experience during her husband’s challenging pancreatic cancer journey. She said, “My family wanted to help me, my husband and son, but they just didn’t get it.” Apparently, it takes more than a supportive family in normal times to “be there” when a family member is diagnosed with cancer, especially a life-threatening one.

My lung cancer was life-threatening, and surprisingly, a casual friend reached out to me. She wanted to take me to the nearby Starbucks and treat me to anything there that tasted good to me at the time. Likely, making the call had not been easy for her; she clearly wanted to let me know how much she cared, but I felt uncomfortable, as well as fatigued, and I said, “No.”

As I healed, I thought back to the compassionate call that I had received almost a year earlier. That’s when I heard that my younger cousin had received an esophageal cancer diagnosis. I remembered my cousin only as a little girl but decided to contact her. After all, I had always wanted a larger, closer family! I sent her several short texts, then we started sharing longer texts and emails. We now talk weekly and hope to meet soon.

I am blessed to have a primary care physician who is truly a friend to me. I have the utmost respect for him medically and as a good man. He’s there for me both as a person and as a patient.

But it may not be possible for oncologists to have true empathy for their patients. It’s certainly not easy. I have had two oncologists, my first was an amazing inspiration to his patients, but empathy came harder for him. My current oncologist has respect and sympathy but can’t quite get into the patient experience. I realize, now, that’s not surprising. He hasn’t been one.

Then within the past month, I read essays by two oncologists, each who had received a cancer diagnosis. One was in his 20s when he was diagnosed. Now a medical oncologist, he was hired into his first position soon after becoming a colon cancer survivor. The other doctor has fortunately survived multiple cancer diagnoses during his long career as a radiation oncologist. Now in his 70s, he, as well as his younger peer, expressed their thankfulness for being able to connect with their patients on all levels: medically, physically and emotionally.

This morning, I got good news from another of my cousins, this one on the other side of my family. Almost three years ago, he and I got to know each other after not having contact for a long time. His message to me this morning was, “My CA 19-9 [pancreatic cancer blood test] as of last Thursday’s blood draw, says I am back in remission.”

Cancer diagnosis significantly alters personal relationships and daily life, often leading to fatigue, nausea, and pain from treatment. The disparity between patients' experiences and their friends' ongoing lives can strain relationships. Support from family and friends is crucial, yet not always sufficient, as they may not fully understand the patient's journey. Oncologists with personal cancer experiences can empathize more deeply with patients. Reconnecting with family members and forming new bonds can provide emotional support. Positive news, such as remission, brings hope and reinforces the importance of maintaining connections.

The strongest connections I’ve made are with others who have also been through their own cancer journeys.

My Lung Cancer Journey: With Family, Friends and Medical Professionals

Kaifan Zhao, AGACNP-BC, came to the United States as a high school exchange student from China. When he was 17 years old, he found himself unexpectedly in the hospital. He had a sore throat but no knowledge of the health care system. Kaifan’s understanding was that in China you could get antibiotics anywhere. He did not know what primary care or urgent care medicine was, and he had no resources to turn to. This early experience for Kaifan made him realize that many immigrants have no clue how to navigate the U.S. health care system.

After the hospital visit for his sore throat, Kaifan received multiple bills that were almost impossible for his family to pay. He received separate bills for the emergency room, emergency room doctor and the hospital. This was eye-opening for Kaifan. After experiencing life through the lens of an immigrant, Kaifan decided to dedicate himself to providing holistic and inclusive care for patients. 

Kaifan has worked at City of Hope for seven years as a clinical supportive care nurse practitioner. Throughout his time in supportive medicine, Kaifan has seen the significant need to serve the immigrant population, especially in supportive and palliative medicine. Kaifan recruited another Mandarin/Cantonese nurse practitioner to serve as the exclusive palliative pain management provider for this population.

Kaifan recalled that although he had many Chinese-speaking colleagues, no one was taking a stand to advocate and serve this population. Having had such a tumultuous experience navigating the health care system as a teenager, Kaifan felt called to make a difference for Mandarin- and Cantonese-speaking patients. He was uniquely positioned with the skills and knowledge to make a difference.

According to Kaifan, most Asian patients are stoic and will endure pain silently during their cancer treatments, but they do not know how to utilize proper resources. Despite use of translators, many patients still do not have a full understanding of their diagnoses or treatment plans. Kaifan explains that there is no exclusive word-for-word translation for “supportive medicine” in the Chinese language. The word “palliative” can connote conniving toward or promoting death. He feels that translators are not equipped with the medical understanding to provide context around the translation. In essence they can translate word for word; but according to Kaifan, the message has to be trans-created. If patients do not comprehend the message, what is the point?

“Don’t aspire to make a living. Let’s aspire to make a difference in the Mandarin/Cantonese-speaking community.” —Kaifan Zhao, AGACNP-BC, palliative care nurse practitioner at City of Hope

Kaifan got right to work in 2017 when he joined City of Hope. At that time, the supportive medicine program consisted of five doctors and three nurse practitioners. The program has grown to more than 20 clinicians. Kaifan recognizes that greater cognizance of supportive medicine, quality of life and pain management are necessary not just for patients, but also for clinicians. Educating and promoting supportive medicine to other providers is a win-win for providers and patients. 

Kaifan conducted a spot check survey at local Chinese grocery stores. He wanted to know what the average understanding of supportive and palliative care was in the Mandarin and Cantonese populations. The survey confirmed his suspicion that most of the individuals had little to no understanding of what supportive medicine was and associated it only with end-of-life care. Kaifan did all of this on his own time because he felt motivated to help this population that was so near and dear to his heart.

Subsequently, Kaifan created a nurse-led supportive/palliative care clinic at City of Hope for the marginalized Mandarin- and Cantonese-speaking community. The clinic has two primary objectives: Develop and provide community education and resources for Mandarin and Cantonese speakers about integrating supportive and palliative care into their cancer care, and launch and pilot test a supportive care clinic for Mandarin and Cantonese speakers that could be scaled up and disseminated to other areas. Kaifan recognized the urgent need to support this vulnerable population. He recalled a Mandarin-speaking patient from Taiwan who was very adherent to his care and never had issues with following instructions. One day the patient did not show up for an appointment, which made Kaifan curious, so he looked through his chart. He saw that the patient had missed all of his recent appointments. Kaifan called one of the patient’s relatives and found out that the patient had passed away the week prior. The patient was socioeconomically disadvantaged and lived alone. It was determined that he had a fall in his home and was discovered a week later.

Many immigrants live alone. Kaifan initiated referrals to a vetted home-based palliative program as a way to monitor patients he considers high risk. This provides wellness checks for these patients and Kaifan can monitor their safety. He knows that a lot can happen between appointments and wants to be sure his patients are safe.

Kaifan has a profound understanding of immigrant life in the United States. When he was a nursing student, Kaifan’s grandfather had advanced Parkinson’s disease and was in the intensive care unit at a small community hospital. The medical team was deciding whether to do a tracheostomy for him. Kaifan’s family had no guidance on how to make this decision, resulting in his grandfather being in pain from the tracheostomy. There was no palliative care involvement at that time. Kaifan’s family regretted the decision. In the midst of all this, Kaifan had to serve as the counselor, social worker, navigator, translator and everything in between. Kaifan cannot help but think that if they had a supportive medicine program like the clinic he has created, it would have made an enormous difference for his family.

Kaifan Zhao, a palliative care nurse practitioner at City of Hope, has dedicated his career to improving healthcare access for Mandarin- and Cantonese-speaking immigrants. His personal experiences navigating the U.S. healthcare system as an immigrant inspired him to address the unique challenges faced by this population, particularly in supportive and palliative care. Zhao established a nurse-led clinic to educate and provide resources for these communities, emphasizing the importance of culturally sensitive care. His efforts aim to enhance understanding and utilization of supportive medicine, ultimately improving patient outcomes and quality of life.

“Don’t aspire to make a living. Let’s aspire to make a difference in the Mandarin/Cantonese-speaking community.” 

Conference

Aspiring to Make a Difference for Immigrants

Reflecting upon my relationship with Jill over the past 25 years, I am in awe of all she has accomplished. I had moved from being an inpatient clinical nurse specialist to the outpatient world. At about the same time, Jill Reese, M.S., APRN, AGCNS-BC, OCN, had moved from a top-tier outpatient center to our small local oncology office, and I was impressed with her knowledge.

As Jill and I became more involved in our local Oncology Nursing Society (ONS) chapter, we continued to share best practices and worked diligently to make the 40-year-old chapter the excellent source of information and networking it is today. For example, Jill attends the annual ONS Congress and meets with chapter leaders from all over the country. She always brings back fresh ideas on how to make our chapter better.

When Jill decided to return to school to become an advanced practitioner, she sought my counsel. Going back to school after many years is never easy, but Jill did so even though she was raising three young children. Her passion for delivering the highest level of oncology care to patients is top-notch.

Jill works in a rural cancer center where she is the only advanced practitioner and there is only one medical oncologist. The center’s infusion nurses are new to oncology. Jill is sensitive to the nurse’s emotions and steps in whenever needed. Jill is a resource for them and a huge support system. She has walked in their shoes and understands how challenging the role can be. Being a mentor to the infusion nurses and seeing them grow is magical. If Jill is speaking with a patient in the treatment room regarding symptom management, she always asks the patient’s infusion nurse to come along, so not only do they hear the plan but they also observe and hear the interactions with the patient and family. From kind words to holding a patient’s hand to sitting on a stool at the patient’s eye level and listening to their needs and concerns, these small gestures make a difference to patients.

Even though they are at a small rural cancer center, patients deserve the quality cancer care that they would receive in an academic setting. For practitioners, staying up to date on current treatments and how to manage side effects is imperative. Attending education programs and conferences, along with taking time to research on our own, is important. After attending national conferences, Jill always shares what she has learned.

Jill led our local ONS chapter as president for multiple years and has served on the board for over a decade. When the president-elect had family issues that precluded her from filling the role as president, Jill offered to serve another year, despite having a busy personal and professional life. She also created new services for her patients in a small community practice such as smoking cessation and survivorship programs.

Jill shares her expertise through publications, even though she receives no credit. She does it to give back to the profession. When I needed additional symptom management chapters written for a book that I was editing, Jill stepped in. I realize that there are numerous accomplished oncology nurses who have achieved great things. However, the heroes who collaborate with patients and families day in and day out are not always recognized for the difference they make in patients’ lives. Jill has done many of the things that others have done, including seeking advanced degrees and certification, publishing, speaking and serving on boards.

Jill stands out because she does these things outside of her everyday work life and is truly at the chairside every day. Jill has the ability to connect with people from all walks of life. Whether it is one of the many collaborating physicians she works with, patients and family members, fellow ONS chapter members or nurses seeking advice about furthering their education, Jill listens and shares her expertise and experience.

There are many reasons why Jill is deserving of this award. She makes a positive impact on so many people’s lives through her dedication to patient care, innovative programs and volunteer activities within ONS on a local, regional, and national level. But most of all, she touches so many lives, one person at a time.

Jill Reese, an accomplished oncology nurse, has significantly contributed to her local Oncology Nursing Society (ONS) chapter and rural cancer center. Her dedication to patient care, mentorship, and professional development is evident through her leadership roles, innovative programs, and educational contributions. Despite personal and professional challenges, Jill consistently shares her expertise and supports her colleagues, enhancing the quality of oncology care in her community. Her ability to connect with patients, families, and healthcare professionals underscores her impact, making her a deserving recipient of recognition for her contributions.

Reflecting upon my relationship with Jill over the past 25 years, I am in awe of all she has accomplished. 

Healer, Mentor and Leader

Kathleen Coughlin, although small in stature, is often referred to as the “Bulldozer.” This appropriate nickname is a direct result of her steadfast determination to break down every barrier that patients and their caregivers encounter throughout their cancer journey. Kathleen believes that patients and their families should be able to place all of their energy into healing. Unfortunately, typically that is not the case for most patients who deal with hardships such as insurance coverage, financial well-being, transportation and child care issues. Kathleen does the extraordinary work of taking the time to truly know and understand her patients and the obstacles they encounter.

Recently, Kathleen had a patient who opted to forgo treatment because of transportation issues. All available resources were depleted, so Kathleen introduced him to another patient who lived in his area and also had received a bone marrow transplant (BMT). These patients and their families were both traveling into the city 2 to 3 times each week. The families were able to support each other and assist with transportation. They have now become extended family and each other’s lifeline. Kathleen realized the profound impact connecting these families had on their well-being. She went on to develop a BMT support group that is regularly attended by patients and their caregivers. This has provided another layer of psychological support, which is so critically needed. This group expressed a desire to continue networking by developing a yearly BMT wellness day. In 2024, Kathleen organized an event in which survivors and their families enjoyed a day making new connections as well as participating in reiki, yoga, massage and art therapy.

In addition to the above, Kathleen has identified gaps in health care systems and is brave enough to institute change. She noted that patients with sickle cell anemia who presented in crisis often encountered disjointed care. Each patient required different levels of narcotics to manage their crisis, and often prescribers who were unfamiliar with the patient had reservations about prescribing high doses of analgesics. This reluctance resulted in patients with sickle cell anemia feeling frustrated and unheard and having to deal with unmanaged pain levels. Some patients expressed mistrust in health care providers as a result of the constant need to negotiate their pain management. Disheartened by this, Kathleen empathized and knew she needed to advocate for this at-risk population of patients. She identified the need to provide education to the emergency room staff so that they felt equipped to treat patients who present in crisis. Providers were shown how to develop a pain crisis management plan that was agreed upon by the patient and was well documented in the health medical records. She also made it her mission to educate providers and nursing staff so they felt better equipped to treat a patient who presents in sickle cell crisis. These interventions led to patients feeling supported, as well as staff feeling safe in their practice.

In addition to all of the above, Kathleen leads a practice of nurse practitioners and a hematology/oncology BMT unit. She understands the importance of ensuring nurses are well supported in their roles so that they can provide optimal care for patients. She, without a doubt, is an Extraordinary Healer, and we are so grateful for the example she is to us.

Kathleen Coughlin, known as the "Bulldozer," is dedicated to dismantling barriers faced by cancer patients and their caregivers. She addresses challenges such as transportation, insurance, and financial issues, ensuring patients focus on healing. Kathleen's initiatives include creating a BMT support group and organizing wellness events to foster community and psychological support. She also advocates for sickle cell anemia patients by educating healthcare providers on effective pain management, improving patient trust and care. As a leader in a hematology/oncology BMT unit, she supports nurses to deliver optimal patient care.

Kathleen Coughlin, although small in stature, is often referred to as the “Bulldozer.” 

Dr. Douglas B. Johnson

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