I was not familiar with how many types of cancer there were until becoming diagnosed with chronic lymphocytic leukemia in January 2019. 

I felt like something was off with my body that I did not understand so I booked an appointment with my nurse practitioner. They called after the labs came back to let me know what the diagnosis was and I made an appointment to see an oncologist. 

I went to two doctors before finding a specialist who understood my case. Of course, not everything has to do with the cancer, but I feel like sometimes I am not heard when sent to other doctors and must explain my story.

I was on a-wait-and-watch approach for about a year and half and nowam on treatment. I have good and bad days but knowthat I am fortunate that there is treatment available, and I can function.

The treatment also causes other side effects I must manage, such as fatigue, the rollercoaster of emotions, feeling like you will never be the same as you were before diagnosis, wondering if family and friends will understand and be able to help and so many more.

I now understand that all cancers are alike in the fact that you must be your own voice as you go through the many appointments and treatments. Please never stop being your own advocate. Do your research, talk with others who have the same diagnosis and read articles about different cases. Get a second opinion.

Each person who goes through a cancer diagnosis has a different path to take but we can learn from each other. No story or treatment is the same for any of us, but we all have a story.

I want other patients to know that they are not alone,they have joined a club no one wants to join but are now a part of. I have found that if you ask a cancer survivor or caregiver a question, they are more than willing to share their experience with you. I feel comfort in asking questions to help validate how I am thinking or feeling and know that I am not alone.

I use my cancer journey to help others. I speak at events, volunteer, drive for the American Cancer Road to Recovery and help host a Nutrition for Wellness for Cancer Support Community in my area. Sharing my experience and thoughts is hard but I know that I have helped someone in their journey tomake it better or easier.That is a “club” I want to be a part of.


This post was written and submitted by Hope Kasr. The article reflects the views of Hope Kasr and not of CURE®. This is also not supposed to be intended as medical advice.

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

When I share my story and use my cancer diagnosis to help others, cancer becomes a “club” that’s a little more inviting.  

I Use My Cancer Diagnosis to Help Others

Hope Kasr 

A shared decision-making tool is an approach that allows the clinician to collaborate with the patient in reaching evidence-informed decision making. This tool permits the patient and the physician to work together in order to make health care decisions based on the patient’s 

 and can ultimately strengthen the patient-clinician relationship. It plays a vital role in patient-centered health care, granting the physician and the patient an opportunity to come up with treatment plans together.

, shared decision-making tools have the ability to increase adherence to medical treatment, enhance decision making, which in turn will improve patient satisfaction. The significance of shared decision-making tools is reinforced by the chair of Population Health Sciences at University of Utah Health, 

., who says, “If people don’t feel engaged in the decision-making process they are less likely to see the benefits of treatments. Instead, they may see them as a hassle and not fill their prescriptions or take the medications.”

The importance of a patient’s voice with respect to shared decision-making will help the physician gain a better understanding of their patient’s needs and preferences. The patient’s voice can be either 

The active voice is associated with the patient’s worries and what he/she requires in order to combat their disease

The passive voice is that of health-related information which is collected from the patient

The patient’s voice is essential in terms of what he/she expects from their treatment plan.

A couple of shared decision-making tools developed for metastatic breast cancer have enabled active patient participation in health care decisions. An example of such a tool is 

, which is primarily used during a consultation between a physician and a patient. CONNECT is a computer-based communication tool 

covered during a consultation and treatment outcome expectations. A clinical trial evaluating the tool found that CONNECT made it easier for patients to participate in their respective treatment plans and therefore left them feeling more satisfied with the care they received.

Patient Preferences for Prostate Care (PreProCare)

 is another tool that helps patient-centered treatment among prostate cancer patients. It allows patients to choose the treatment that they deem fit and that aligns with their values. This tool narrows down treatments for prostate cancer while giving patients the autonomy to choose based on their preferences. The tool works to identify the preferred features of prostate cancer treatments that will help in designing ways to help patients. The PreProCare tool improved patients’ 24-month satisfaction rate with care and decision and reduced regrets.

Madiha Zaidi is an intern with the Colon Cancer Foundation.

A shared decision-making tool is an approach that allows the clinician to collaborate with the patient in reaching evidence-informed decision making. 

Benefits of a Shared Decision-Making Tool for Colorectal Cancer Patients

Madiha Zaidi

I was at the gym doing my usual “I’m just going to get undressed and into the shower as unobtrusively as possible” thing when a woman I have never seen before said in a loud and cheery voice, “I like your hair!”

For a moment, I was startled and tried to make sense of what she meant. Did she think I was intentionally choosing to wear my hair in this version of an extreme buzz cut? But then our interaction became clear. She showed me her port, which she said was going to be removed next week. She went on to explain that she had been fighting stage 4 uterine cancer for over two years.

This woman’s tone and invitation were incredibly kind and gentle. And so, I found myself talking to a stranger in a place where conversations usually do not get more intimate beyond, “Oh, there’s no hot water today. Go figure!” She explained that she had lost her husband a year before her own diagnosis and endured all sorts of treatment, but that she had a 15-year-old son and there was no question that she would do what it took to be there for him.

She noticed that I was looking a bit haggard, and I admitted as much, voicing my unhappiness that this chemo meant I couldn’t work out at nearly the intensity I had been accustomed to. Her suggestion was to back off, let my body heal itself and reminded me that I could always work my way back to the fitness level I desired. Then she gave me a salmon-colored plastic bracelet that her son was selling to raise funds for Relay for Life. Then, she looked me straight in the eye and said, “Girl, you’ve got to learn to love on yourself!”

These were words — and wishes — I find myself hoping to be worthy of, advice I might just try to build the rest of my life around.

My friend Patty had been talking for some time about this woman she wanted me to meet. Polly works for a resource that supports women with breast cancer. She described Polly as a nurse who was extremely knowledgeable and caring and assured me that I would get a lot out of talking to her.

I now have a policy of saying yes to invitations like this. I especially appreciated Patty’s kindness and her desire to offer a helping hand attached to a warm hug. We discussed “going to see Polly” not long after my surgery. I thought it might be useful to talk to an expert in the field because I had made decisions that, in retrospect, seemed hasty.

But what I did not know, until we actually walked into Polly’s “office,” is that she works as a prosthesis-fitting specialist. Polly and I chatted for a few minutes about my mastectomy and decision not to pursue reconstruction

“Yes,” she reassured me, “many women just know they are 

She then invited me into her private dressing room. Before I had any opportunity to think about what was happening or even to assess how I felt, she had produced several different kinds of bras (sports bra, lacy black bra) and then, 

, a slightly squishy, fairly realistic looking boob created from the wonders of silicone. She took the squishy thing and expertly stuffed it into the side pocket stitched into the bra cup and 

! I had a new look! Two boobs! One hour ago, I wasn’t even entertaining the idea that I would pursue a prosthesis, and now here I am, walking out with three new bras, a swimsuit and a fake boob in a box.

Polly told me that when I went out to model my new figure, she noticed that Patty had tears in her eyes. I am truly touched by my friend’s support at this new stage of my cancer journey. I do feel more whole. Today, I can say that it feels as if cancer has subtracted less from me, and that love and caring, along with the marvels of modern technology, have been added to my chest and to my heart.

This post was written and submitted by Claire Chow. The article reflects the views of Chow 

and not of CURE®. This is also not supposed to be intended as medical advice.

From an unexpected encounter in the gym to finding her first prosthesis, a breast cancer survivor recounts two impactful stories in her cancer experience. 

Unexpected Angel and Boob in a Box: Two Stories from a Cancer Survivor

Claire Chow

Speaking of advocacy, Mr. Lewis, you run KidneyCAN. You have been instrumental in getting all of this funding for kidney cancer research. Talk a little about resources and the challenges that are coming up for the field.

 First of all, thank you, Dr. Lee. Meryl, your story is so inspirational and moving. We need to cut that section out and make it a motivational speech to send around. It was awesome to hear that. I have a couple of other thoughts on that before we talk about advocacy a little.

Ms. Virdee, what you pointed out about communication is so important. It’s hard to communicate in the medical environment. Sometimes people are intimidated. But if you create an environment where there’s collaboration, discussion, or shared decision-making, and there’s a sense that people can be comfortable talking with you, with their medical providers, that’s huge. That’s a huge barrier that a lot of people don’t realize. They come into a hospital setting and it’s off-putting at times, or it can be scary. Breaking down that barrier of communication and allowing for communication is so important. Especially because many of us have been on Google looking for information and have misinformation.

Another point I want to touch on is that we talk about side effect management a lot these days because it’s so important. I’m not sure where this goes exactly, but the medical profession talks about grades 1 through 5. We don’t even want to talk about grade 5 most of the time. I’m wondering if we can’t dive down a little further, because it’s hard to distinguish as a patient the differences between grades 1 and 2 and between 2 and 3. We don’t have time to go into that right now, but that’s something we need to work on as a community.

Quality-of-life measurements are gaining importance in clinical trial design and development. We all applaud that. Now it’s up to us to try to figure out how we approach quality-of-life measures as a standard across society. One of the things someone told me recently is, “When you think about measuring quality of life, what you’re not taking into account is that you had a different quality of life prior to having cancer. You now have a new standard of what your quality of life is because you have cancer.” You have to keep that in mind.

Thank you for this opportunity to hear Meryl’s story—that was awesome—and the latest on personalizing medicine. That’s very inspiring for the patient community to hear. Quickly on the front with advocacy, as Meryl pointed out, kidney cancer has been underfunded for many years. As you said, Dr. Lee, we’re sixth or eighth or ninth, depending on the year and gender, but we’re in the top 10 of cancer diagnoses. We need to have more funding to find out what’s going on in this space.

KidneyCAN and eight or nine other organizations partner to do advocacy on Capitol Hill in Washington, D.C. Yesterday, we finished about 180 meetings with 39 states represented. I have to give a shout-out to our wonderful leader, Debra Beyhan, from Atlanta, who’s organizing most of this. We have doctors, researchers, and patients talking to our elected representatives and saying, “Thank you for this investment in kidney cancer research, but we need more.” We need more at the NIH [National Institutes of Health]. We need more through the KCRP [Kidney Cancer Research Program] and others. And I think our voice is being heard.

We’re louder these days than we have been in the past, and we continue to march forward, but we’ve got a lot of ways to go. The reason that came front and center yesterday was because I was on a call with one of the Senate offices, and one of our patient advocates told her story about being diagnosed with kidney cancer, but then during treatment being subsequently diagnosed with breast cancer early on. She compared her treatment for breast cancer early on with her treatment for kidney cancer, and it’s unfortunately night and day. The amount of research and knowledge that they have around breast cancer these days is off the charts compared with the knowledge and information on kidney cancer. We have to change that. That’s what we’re doing. With people like you and others who are doing the research to help advance cures, that’s what we’re all in this together to do.

We’ve been very fortunate to have some champions in Congress. We’re continuing to march forward. We asked yesterday for $60 million for the KCRP. I got cautiously optimistic, but we heard this morning that the omnibus bill that came out for this fiscal year includes our $50 million for kidney cancer research. We locked it in for another year. Now we have to get some more, and efforts like from everybody on this call is making a difference. Thank you for this opportunity.

Yes, the work that you do is fantastic. The ability to have a unified voice from the patient, advocate, researcher, and clinician front is necessary to think about how we can move the field forward. The ability to have all of these scientific advancements unfortunately isn’t free. These types of investments that we’re all making are critical for thinking about how we can advance the field and change outcomes for patients.

First of all, let me thank all of you for joining me today and sharing your valuable perspectives. And to our viewing audience, thank you for joining us. We hope that you found this episode of the 

Bryan Lewis, president of KidneyCAN, and Chung-Han Lee, MD, describe unmet needs and future perspectives in the treatment of renal cell carcinoma.

Unmet Needs and Future Perspectives in the Treatment of RCC

Chung-Han Lee, MD

Treatment with 177Lu-PSMA-I&T in patients with prostate-specific membrane antigen (PSMA)-positive metastatic castration-resistant prostate cancer (CRPC) demonstrated meaningful benefits in radiographic progression-free survival (PFS).

177Lu-PSMA-I&T is a type of radioligand therapy that targets PSMA, according to the National Cancer Institute. This helps destroy the prostate cancer cells.

The phase 3 ECLIPSE trial, which included approximately 439 patients, met its primary end point, which was radiographic PFS, according to a news release from Curium, the manufacturer of 177Lu-PSMA-I&T.

The pivotal trial is comparing the safety and efficacy of 177Lu-PSMA-I&T with hormone therapy in patients with mCRPC, the release stated.

“ECLIPSE is the first Phase 3 trial investigating a 200 mCi [7.4 GBq] dose of 177Lu-PSMA-I&T administered every six weeks for up to six doses, demonstrating clinical benefit, in mCRPC patients before receiving taxane-based chemotherapy.” Dr. Sakir Mutevelic, chief medical officer of Curium, said in the news release. “Curium will continue to work with the FDA as the clinical trial data matures, on a regulatory submission plan for this potentially important product for patients, their caregivers and the health care providers treating prostate cancer.”

PSMA-Targeted Therapy May Decrease PSA Levels in Metastatic Prostate Cancer Subset

Previously, Curium announced ECLIPSE had enrolled more than 400 patients, ahead of schedule, across 51 trial sites in the United States and Europe.

Patients will be randomly assigned to treatment with the investigated agent and will receive up to six treatments every six weeks at a dose of 200 millicurie (mCi), and all enrolled patients will be evaluated for side effects and safety labs throughout the study. Additionally, the progression of disease will be assessed radiographically and through conventional imaging in addition to prostate-specific antigen levels and symptom recording throughout the course of treatment.

Furthermore, at selected participating clinical sites, 30 patients will participate in a pharmacokinetic and radiation dosimetry sub-study. These patients will receive SPECT imaging following each treatment cycle for dosimetry analysis and patients will not be randomly assigned.

“The ECLIPSE achievement of its primary end point represents an important clinical milestone in the development of our prostate theranostic program,” Michael Patterson, chief medical officer of Curium North America, added in the release. “This underscores Curium’s continued commitment and focus on nuclear medicine diagnostics and therapeutics. Curium will continue to work to fulfill its mission of redefining the experience of cancer through our trusted legacy in nuclear medicine by ensuring unrestricted access to this important product, if approved.”

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The phase 3 ECLIPSE trial demonstrated that 177Lu-PSMA-I&T, a radioligand therapy targeting PSMA, significantly improved radiographic progression-free survival in patients with PSMA-positive metastatic castration-resistant prostate cancer. The trial, involving 439 patients, compared the safety and efficacy of 177Lu-PSMA-I&T with hormone therapy. Patients received up to six doses of 200 mCi every six weeks. The trial also included a sub-study for pharmacokinetic and radiation dosimetry analysis. Curium plans to collaborate with the FDA for regulatory submission, emphasizing their commitment to nuclear medicine advancements.

Patients with PSMA-positive metastatic castration-resistant prostate cancer showed benefits after receiving PSMA-targeted treatment. 

PSMA-Targeted Radiation Drug for Prostate Cancer Subset Meets Study Goal 

Ryan Scott

Although my story is still unfolding there is much to share about what has brought me to where I am today. Take a trip down these past nine years with me—starting in 2011. That’s when my journey began, and my life changed forever. That’s when, at the age of 40, it was discovered that I had massive tumors on both my ovaries which was confirmed – through surgery – to be late-stage ovarian cancer.

I would love to tell you that I knew about ovarian cancer, but that’s simply not true. I had no clue about it. In my mind I didn’t know it even existed even though, later, I vaguely recalled that my uncle’s wife had gone through the exact same cancer years before. That said, I didn’t know anything about it. I didn’t know the signs or symptoms. I didn’t know that there was a month dedicated, September, for awareness and that the color for ovarian cancer is the color teal. I don’t remember seeing commercials about it or people talking about it at high school, college or at the workplace. And because of that, I didn’t know what to look for when my body started talking to me.

Which is what it surely did in 2011. First there were whispers, then it got louder and then there were screams. By the time I saw a doctor, six months after first getting the whispers, my body was screaming at me. Screaming at me to stop ignoring (and being in denial of) all the symptoms: diarrhea, need to urinate more, lack of appetite, feeling full after eating little, abdomen pain, back pain, night sweats and abdomen bloating that caused weight gain. I had done what no one should do, which is not listen to their body. It was fear and denial. I knew something was wrong, but I didn’t want to admit it. And that was foolish – in a way that could have cost me my life.

However, I suppose God still had plans for me as, obviously, my life didn’t end there. After surgery, I did five months of chemotherapy—the kind that after three cycles had me thinking I was going to die if I did anymore, which led to my decision not to complete the last three cycles. In 2012, I completed a total of five months of treatment and was given the seal of approval that I was in fact, in remission. It was because of that I headed back to Saudi Arabia to return to teaching.

Even though the next almost seven years I had my ups and downs with the aftermath of cancer and chemotherapy I was grateful to have remained in remission. I continued to teach in Saudi Arabia and was blessed to spread a lot of ovarian cancer awareness at the different places I taught at. I also continued my love of traveling and was able to visit ten or eleven countries in the time I was cancer-free. 

I suppose the word grateful doesn’t even come close to capturing how my heartfelt for having so many amazing opportunities post-cancer. Especially considering how many women, who were diagnosed with ovarian cancer, didn’t get all the years that I got and still have. I wanted to show people that there is life after cancer – and I believe I continue to succeed with that. First with my book 

, which was published in 2014. And then through my social media platforms.

And even now, in 2021 as I celebrate my 50th birthday, despite my current circumstances of cancer returning twice within a year and a half. I still very much believe that there is life after, and during, cancer. That, yes, cancer 

 break our bodies, but it cannot break our spirits – if we don’t allow it to. That, yes, cancer 

 make life hard, physically, psychologically, and financially, but it doesn’t have to mean that life is over. At least that is what I’m choosing to believe.

At the moment it may be hard to realize, but your life is not over because of cancer.

Your Life Is Not Over Because of Cancer

Hope Aguilar

Trish Traylor, RN, OCN, always exhibits compassion to me. She causes me to relax when I feel nervous before a treatment session. She explains everything that is happening during any treatment I get. She answers all my questions with clarity and never rushes an answer. She is extremely careful when inserting needles into my arm. Her smile always makes me feel at ease. Trish at Maryland Oncology and Hematology in Bethesda is truly a wonderful human being.

Editor’s Note: This is an essay submitted by Elisabeth Schlegel for the 2021 Extraordinary Healer Award. 

 to read more about CURE®’s Extraordinary Healer® Award for Oncology Nursing event on April 30, 2021.

During anxious times throughout treatment, one patient details how her oncology nurse helped her to relax at visits to her cancer center.

How One Cancer Nurse Exhibits Compassion on a Daily Basis

Elisabeth Schlegel

Twenty-five years ago in March, an ultrasound indicated that what I thought might be a hernia was a mass. The first specialist we visited told me to get my affairs in order — shame on him. We found new specialists with help from friends.

In April, surgeons took a biopsy but didn’t remove the tumor because it was so big (the size of my hand). Toward the end of June, when I looked like I had a soccer ball inside me and still didn’t know the pathology, I panicked and started calling for the report. It came from a specialist in Michigan: a sarcoma growing on my abdominal wall, a stage 4 malignant fibrous histiocytoma. My spouse asked my chances, but I wouldn’t let my doctor answer because it was too scary. We aren’t statistics.

I live in northwest Oregon and received wonderfully holistic care. My oncologist told me it would be hard and started chemotherapy immediately after local specialists decided that the only protocol for my cancer should be reordered to begin with chemotherapy rather than excision. She warned that the therapy was highly toxic and that I’d need to wear a pump to spread the infusion over 36 hours, that I should stop working and remain as active as I could.

I couldn’t do much but promised myself one happy thing every day — a promise I kept with help from family, friends and my dog. Surprisingly, there were many reasons to be happy, and I have some awesome memories. I believe we need to forge good support systems and keep close to the people who make us happy, for better outcomes.

The chemotherapy used for me is so toxic that the maximum life dosage is six treatments; that chemo treatment would last only four months was helpful to me. I postponed the last two treatments and we went to the Grand Canyon, that magnificent part of creation that is so much more powerful than cancer. Inspired by a yucca blooming on rock, I came home and finished chemo and then a month of daily radiation. That last month of treatment I lost almost a quarter of my body weight as my digestive system shut down.

I didn’t know if the cancer or the treatment was doing the damage, but my body was about done with all of it. Friends and family looked scared when they saw me. I looked scared when I saw me. A plastic surgeon warned I’d likely never be able to stand or cough or laugh again — how cruel of him to assume he was up to the job.

My oncologist recommended a new surgeon, the only local physician who had seen this type of cancer; he added the area’s plastic surgeon specializing in trauma. It was a very difficult and extensive surgery that would remove all my abdominal flat muscles and whatever else the tumor had impacted.

The friends and family sat vigil. The surgeons gave them reports, with increasing excitement as they found the tumor (about the size of a deflated basketball) necrotic, then found clean margins, then put me back together with all the bad bits excised. I learned then that statistics gave me less than a 5% chance of survival.

So many things went right. Docs and nurses were excellent at their work and committed to the best care possible for me. Friends and family were brave and close, offering amazing support and love. Church friends fed us, drove me around, cleaned house or garden; they stayed.

Then, five years later, one thing went wrong: there were two new tumors at the right margin and no second protocol of treatment. My wonderful surgeon told me not to worry, that he could save me without chemo or radiation. He did. In these years I’ve shared my kids’ graduations, weddings and childbirths. I’ve had a wonderful life and am deeply grateful for it.

A couple years ago I visited that wonderful surgeon before he moved away. We both cried; he still makes me feel safe. I still see my oncologist every year hoping to stay ahead of whatever that treatment may still do to me.

I learned such important things: to find physicians I trust, to let others help me, to make joy however we can, to not waste energy on fear or anger, to be fully alive every day that I am. I hope the same for all of us. Live in hope and look for miracles.


This post was written and submitted by Terri Hoffmann. The article reflects the views of Terri Hoffmann and not of CURE®. This is also not supposed to be intended as medical advice.

Surprisingly, there were many reasons to be happy, even throughout my difficult cancer treatments, and I have some awesome memories. 

I Promised One Happy Thing a Day During Cancer Treatment

Terri Hoffmann

Written by Ginny Kirklin, M.P.H., on behalf of the Advanced Breast Cancer (ABC) Program steering committee, advocates and patients at The University of Texas MD Anderson Cancer Center, Houston, Texas

On behalf of patients with metastatic breast cancer (MBC), advocates and members of the Advanced Breast Cancer (ABC) Program at The University of Texas MD Anderson Cancer Center (MDACC), we are thrilled to nominate the ABC Program’s nurse practitioner navigator, Abbey Kaler, M.S., APRN, FNP-C, CMSRN. 

Abbey is so many things to each of us personally and is a beloved and treasured friend. She has been instrumental in the fight against MBC within MDACC and beyond. Her contributions and impact are far-reaching in helping create and implement many important supportive programs to assist patients with MBC, caregivers and health care providers alike. This is largely because she has an ear attuned to listening that helps her represent the patient’s voice.

Abbey Kaler, M.S., APRN, FNP-C, CMSRN, Wins CURE®’s 2023 Extraordinary Healer® Award

Abbey’s immersion into the medical world began at a very young age. When she was 9 years old, Abbey received a diagnosis of juvenile pilocytic astrocytoma, a rare benign brain tumor. Two brain surgeries later, doctors successfully removed the entire mass and, fortunately, it has not reappeared.

Abbey has shared that she remembers how she and her family felt vulnerable and helpless during this time. Questions of her mortality surfaced during her health scare at that tender age. She recalls how grateful she was for the supportive nurses and doctors during those frightening times.

In addition, it ignited Abbey’s desire to pursue a medical career in hopes of caring for and supporting patients. In 2011, Abbey received her Bachelor of Science in nursing at Baptist Health Sciences University in Memphis, Tennessee. Thankfully, in a different capacity, she returned to MDACC, not as a patient this time but as a bedside registered nurse working in the targeted therapy clinical center with patients participating in phase 1 clinical trials. With her past experiences, memories and natural empathy, she could share her experiences and educate the patients to empower them.

Moreover, in 2019, MDACC published an article about Abbey. She was quoted as saying, “So if I, as a nurse, could use any of my knowledge to help them have a bit more control over the situation and feel a little less scared, that was the biggest gift I could give.”

Abbey continued her postgraduate education to become a family nurse practitioner in 2017. She daily follows the motto “Love, Listen and Heal.” She was hired as a nurse practitioner navigator for the ABC program in the department of breast medical oncology (BMO) at MDACC in 2018 and has been essential in the initiation and implementation of many patient support programs.

Additionally, she is enrolled as a Ph.D. nursing student at the UTHealth Houston Cizik School of Nursing, where she was awarded a Jane and Robert Cizik Scholarship. Her research focuses on incorporating the patient’s voice in their care planning to improve the overall experience of individuals with metastatic cancer.

Abbey had an article published in the journal Nursing Forum in 2022 as part of her doctoral work: “Patient Voice in Metastatic Cancer: A Conceptual Analysis.” Indeed, this is one of the extraordinary qualities of Abbey that sets her apart: Abbey closely works with each patient and uses the patient’s voice to positively influence their quantity and quality of life. Patient education and empowerment utilizing the patient’s voice are two of Abbey’s true loves and life pursuits.

She is an accomplished researcher and presented several posters at the San Antonio Breast Cancer Symposium in December 2022. All presentations focused on supporting patients with MBC. She also was a finalist for the 2022 Brown Foundation Award for Excellence in Oncology Nursing. This is one of MDACC’s highest nursing honors and recognizes excellence in all aspects of oncology nursing, including patient care and adherence to standards in clinical treatment.

Our ABC Program is unique in that grassroot efforts of a small support group of patients with MBC, caretakers and advocates made its creation a reality. They quickly gained sup- port of faculty and staff at MDACC, and together they collaborated to brainstorm and plan. Meeting once a month on site, this fledgling group formed to expand their idea of building a new program that met the distinctive needs of patients with MBC, to support them and their families through the emotional and physical roller coaster of MBC treatments.

With institutional support and huge fundraising efforts by patients with MBC, caretakers and advocates, the ABC program has quickly grown into a wonderfully diverse and cohesive group of research and practicing physicians and faculty, nurses, patients with MBC and advocates. Its overriding goal is to improve the quality and quantity of life of patients with MBC.

Abbey has been instrumental in the growth of the program and its many initiatives. She has been involved with collaborative grant writing, program implementation and communications among all its working parts.

In addition to her professional contributions, Abbey and her family have participated annually as part of the wildly successful MBC fundraising team, Stomp Out Stage 4 Breast Cancer, at MDACC’s annual institutional Boot Walk to End Cancer fundraiser. The money raised has helped support the ABC program and, ironically, provided the essential “seed money” to hire our dedicated nurse navigator, Abbey Kaler, in 2018.

Abbey’s telehealth appointments with patients with MBC have steadily grown to assist more than 300 patients each year. Abbey also moderates the weekly virtual MBC support group. By its virtual nature, the hourlong meetings have reached patients across the country and average 20 attendees weekly. Abbey skillfully manages the meetings to allow all who are connected to participate; ask questions related to symptoms, treatments and side effects; and communicate with other patients with MBC. Abbey’s medical knowledge and compassion always help make it rewarding, and a close camaraderie has developed among its members.

Abbey also organizes and moderates a popular weekly virtual webinar, “The ABCs of Healthy Living in Challenging Times.” She has invited guest speakers, faculty and staff to educate the broader community. More than 130 webinars have been presented so far, with topics including medicine and research, participatory self-expression (art, dance and writing) and end-of-life discussions. Importantly, these have helped to educate and empower patients with MBC and are an important component of her nurse navigator toolbox.

Voices of patients with MBC have been able to initiate and shape many new grant initiatives. Abbey was instrumental in starting a medical partnership with general internal medicine at MDACC. This unique partnership is named the LIMBS clinic (Linking Internal Medicine and Metastatic Breast Cancer for Success clinic) and was specifically created for patients with MBC lacking an outside primary care physician who was comfortable treating patients with this disease. This addressed a need vocalized by many patients with MBC who required specialized medical care complicated by their ongoing metastatic cancer.

Abbey has collaborated on grant writing with BMO research faculty on several grant initiatives that greatly benefited the MBC community. Again, this was often driven by listening to patient voices. For instance, an implemented Pfizer grant enables patients on oral oncolytic treatments to have bloodwork done at local laboratories outside of MDACC and follow up with their oncologist via a video visit. The lab results can now be forwarded to the doctor via email rather than by faxing, which further increases efficiency. This has also helped to minimize the number of trips to MDACC by patients who live a distance away.

The post-mortem tissue collection subcommittee was formed to restart the collection and analysis of tissues donated by patients with MBC after their death. The COVID-19 pandemic temporarily suspended this important research work, but with collaboration from Abbey, patient advocates and researchers, it has reopened again for enrollment. This novel approach will enhance ongoing investigations into further characterizing MBC pathology, which may help lead to new therapeutic strategies and therapies. And what a beautiful gift for a patient to give at the end of their life! Again, we have Abbey to thank for helping to connect the ABC program with other MDACC departments to advance research and clinical initiatives.

Abbey has been deeply involved in a multitude of ways in increasing both the quality and length of lives of patients with MBC. She is our ABC program champion. She listens and acts on what she learns from the patient’s voice. On top of all Abbey’s accomplishments within the ABC program at MDACC, she is also a loving wife and mother of two young girls. Abbey has dedicated her life to fighting metastatic breast cancer in countless ways and is truly worthy of the Extraordinary Healer Award for Oncology Nursing.

Oncology nurse, Abbey Kaler, M.S., APRN, FNP-C, CMSRN daily follows the motto “Love, Listen and Heal.”

Champion of the Patient With Cancer's Voice

Ginny Kirklin, M.P.H

On the way home from school, with more time

to wonder than in the morning, kicking stray

stones from puddles of dust, beneath the caws

of unseen crows, my eyes caught on the fence-row

oak that must have chafed and bled for years

before it swallowed the thorned rusting wire

in smoothness of its bark, in wholeness of its soul.

Everything about the poem is literally true, just a boy marveling at something he hardly understood. Nor could he then. The dirt road cut between fields and ended at our house overlooking the St. Joseph River in southwestern Michigan. The dawns dazzled, sunlight skipping off the river, through the woods, up the hill, into our home, reflections of light, water and leaves swimming across the ceiling. At dusk the tasseled corn and solitary trees stood in silhouette against the blushing, flaring, deepening glow with an art all its own. But all was not well.

The fields were sprayed with herbicides that seeped into the groundwater and infiltrated our well on the way to the river. The water tasted clean, with slight traces of earth and iron ― and who knows what else. My father and mother both died of cancers. Two sisters have survived breast cancer. A brother has chafed and bled for years against chronic lymphocytic leukemia. I have had two bouts with non-Hodgkin lymphoma, the same cancer that took my mother. It’s not just a bad day or a bad month. Each was a miserable year that seemed like forty.

And yet the earth abides and nature heals, cancers included. It has been 25 years since my first, 12 since my last. The fields and water are cleaner now. My bark is smooth, my soul is whole, and most days I never think about the rasping wire, rusting barbs, and scars nearly invisible. The dawn still dazzles; the evening still glows, now more richly than ever. The tree of life stands firm, deeply rooted, spreading tall and wide, still leafing in that splendid light.

This post was written and submitted by John Savoie. The article reflects the views of Savoie and not of CURE®. This is also not supposed to be intended as medical advice.

Even though cancer made its rounds through my family and myself, nature has brought a lot of healing.

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