At just 19, Angela Bristow's life took an unimaginable turn. A college student with her future ahead of her, she was thrust into a world of MRIs, surgeries and grueling treatments when diagnosed with ependymoma, a cancer that typically affects the brain and spine. In her case, however, the tumor was located near her coccyx — an exceptionally rare location for this type of cancer.

"I'll never forget how difficult the recovery was after that first surgery to remove the tumor," Angela recalls. "I ended up with an infection while still recovering at home with my parents. I tried to go back to college afterward, but being away from my support system made everything so much harder."

Looking back on those early days, she shares, "Doctors didn't know what we were dealing with. I wasn't angry — I just kept going because that's all I could do."

Life regained some normalcy after her initial recovery. She met Chris — her future husband — and started planning a future. But less than a year into their marriage, the cancer returned, this time requiring surgery and 30 days of radiation. Two years later, the disease spread to her pelvic lymph nodes.

This marked a turning point. Angela sought a second opinion at Mayo Clinic, where her care team removed 13 lymph nodes, sparing her from further therapies. "Mayo became my anchor," she says. "For the first time, I felt like I wasn't fighting this alone."

Over the next two decades, Angela’s life became a cycle of surgeries, treatments and recoveries, as tumors returned every two years. Yet, she found strength in her "dream team" at Mayo Clinic, including her palliative care team, who are dedicated to easing suffering by managing symptoms associated with serious illness. Beyond medical care, they provide compassionate support to patients and their loved ones during life's most trying moments.

"I have the distinct privilege of supporting Angela as she navigates the challenges of living with cancer," Dr. Liz Sokolowski, Angela’s palliative care physician, says. "From our first meeting, I was deeply moved by her resilience and strength, and how she continues to maintain hope and her sense of humor. Patients like Angela are true heroes. They teach us daily about courage, and they remind us why we do this work."

Advances in treatment provided new hope. What began with surgeries and radiation evolved into cryoablation, thermal ablation and, more recently, oral chemotherapy. Even when the cancer metastasized to her lungs a decade ago, Angela faced each recurrence with determination, balancing the fear of the unknown with acceptance. "Cancer doesn't own me," she affirms. "It's part of my story but not the whole story. I'm still learning, still growing and still fighting. There's a reason I'm here."

Angela's journey is one of resilience, self-advocacy and profound partnership — with her care team and her family. Chris has been her unwavering support, whether staying overnight in hospital chairs or managing wound care. Their daughter, now a teenager, has grown up witnessing her mother's courage. "She was just 3 months old when she stayed in my hospital room. She's my light, and Chris is my rock."

Now, at 48, Angela speaks with heartfelt wisdom.

"I wish I could tell my 19-year-old self it will be OK. Cancer doesn't define life; it's just a part of it," Angela says. For those walking a similar path, she offers this advice: "Advocate for yourself, build a trusted care team, and don’t let cancer take more than it has to. You are stronger than you think."

Tips for navigating long-term cancer care

Managing cancer can feel overwhelming, but with the right tools and mindset, balance and strength are possible. Whether you're newly diagnosed, in treatment or in remission, here are Angela's practical tips:

1. Stay proactive with checkups.
   Maintain regular checkups with your healthcare team, even in remission. Work with your healthcare professional to set a personalized schedule for follow-ups and tests. Many hospitals offer apps or portals to help manage appointments and stay on top of your care.
2. Explore integrative therapies.
   Cancer care extends beyond medical treatment. Services like acupuncture, meditation or aromatherapy can help manage side effects and improve well-being. Ask your care team about available options.
3. Build a support network.
   A strong support system can make all the difference. Lean on family, friends or support groups to stay connected. If in-person groups feel daunting, consider online options or platforms like CaringBridge for sharing updates and receiving support.
4. Consider clinical trials.
   Clinical trials can offer access to innovative treatments and contribute to advancing cancer care. For patients with rare cancers like ependymoma, organizations like Collaborative Ependymoma Research Network (CERN) provide valuable resources and information about ongoing trials. Speak with your oncologist to explore research organizations that may help guide your treatment options.
5. Tap into health resources.
   Cancer education centers often provide free workshops, nutrition guidance and creative outlets like art therapy. These resources can keep you informed and engaged in your care.
6. Care for your emotional health.
   Therapy offers a safe space to process emotions and build coping strategies. If traditional therapy isn't for you, mindfulness practices like deep breathing or meditation can reduce stress. Activities like a walk in the park, a lunch outing or a favorite hobby also can lift your spirits.
7. Personalize your journey.
   Cancer is deeply personal, affecting everyone differently. Begin with one or two strategies that feel right for you, and gradually explore more as you're ready. Small, intentional steps can help you build a meaningful and well-supported life.

Angela's story is a reminder that while cancer may shape your path, it doesn't define your destination.

"No matter what, there is always more life to live, more love to give and more reasons to keep fighting," Angela says.

The post Living beyond diagnosis: Angela’s 30-year journey with ependymoma cancer appeared first on Mayo Clinic News Network.

There is new hope in the fight against glioblastoma, the deadliest and most aggressive form of primary brain cancer.

Currently there is no cure, but results of a new study conducted at Mayo Clinic show patients experienced improved overall survival while maintaining quality of life after undergoing a novel approach to treatment.

Watch: Breakthrough in the fight against glioblastoma

Journalists: Broadcast-quality video (2:45) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Richard Casper was one of the study participants. The Arizona man enrolled in the clinical trial at Mayo Clinic in Phoenix after his diagnosis of glioblastoma in 2019. Richard was given only months to live, but his family says thanks to his strength, perseverance, and innovative medical care, he survived nearly double the amount of time.

"To be almost two and a half, three years in after being told you only have a few months, it's quite remarkable," says Susan Casper, Richard's daughter.

Richard succumbed to the disease in 2023. During the treatment, his family says he had little to no side effects. In the months before his passing, Richard stated, "I feel great. If someone didn't tell me I have the glioblastoma, I wouldn't even know it."

The clinical trial was led by Dr. Sujay Vora, a radiation oncologist at Mayo Clinic in Arizona. The small, single-arm study incorporated the use of advanced imaging technology combined with cutting-edge radiation therapy in patients over the age of 65 with newly diagnosed World Health Organization (WHO) grade 4 malignant glioblastoma.

"The patients lived longer than we expected. This patient population is expected to live six to nine months. Our average survival was 13.1 months. There were some patients that were out closer to two years. The results exceeded our expectations. We are very pleased," says Dr. Vora.

The study is published in The Lancet Oncology.

Why is glioblastoma so deadly?

Glioblastoma is among the most challenging cancers to treat. The disease is aggressive and invades healthy brain tissue with hairlike tentacles. "That is why doing a complete surgery is very difficult, as compared to say breast cancer, where a lumpectomy can be performed to remove not only the tumor, but a healthy rim of tissue around it," explains Dr. Vora.

Surgery for glioblastoma presents a different set of obstacles. "When it comes to glioblastoma, it is challenging to do that level of surgery. You try to surgically remove whatever you can safely without leaving the patient worse off after surgery."

Another factor that makes glioblastoma so lethal is that it can be fast- growing and unresponsive to treatment.

"These cancer cells are quite challenging to overcome," says Dr. Vora. "There are some patients we see after their surgery, and by the time we are ready to start their treatment, they've already had a recurrence of the disease."

An estimated 14,500 people will be diagnosed with glioblastoma in the U.S this year. "In the best of circumstances the average survival rates are in the 14-15 month range. But for patients 65 and older, the group that was the focus of our study, patients do even worse. The prognosis for this population is between six and nine months," says Dr. Vora.

Symptoms of glioblastoma

• Headache
• Nausea and vomiting
• Confusion or decline in brain function
• Memory loss
• Personality changes
• Vision changes
• Speech difficulties
• Trouble with balance
• Muscle weakness
• Seizures

Attacking glioblastoma with a triad

For the clinical trial, Dr. Vora and his team mapped out a plan that would allow them to be more intentional and precise with treating the location of the glioblastoma.

The imaging incorporated the use of ¹⁸F-DOPA PET and contrast-enhanced MRI. "¹⁸F-DOPA PET is an amino acid tracer that can cross the blood brain barrier, and it can accumulate within the glioblastoma cells itself," says Dr. Vora.

Researchers combined these images to determine the location of the most metabolically active "hot spots" of the cancer in the brain.

Taking aim with proton beam therapy

Study investigators used one of the most advanced forms of radiation treatment, called proton beam therapy.

"With standard radiation, the beams go through the brain tissue, so there's an entrance dose and the exit dose. But with proton beam therapy, we dial up how deeply we want the radiation to go," explains Dr. Vora. "It drops off its energy in the tumor, and then there's basically no radiation after that. It allows us to be more preferential into the delivery of radiation and protect more of the healthy surrounding tissue."

During proton beam therapy, a patient lies on a table while the machine rotates around the patient's head targeting the tumor with an invisible beam. The patient is awake for the procedure. It is painless with many patients reporting fewer to no side effects.

Unlike traditional radiation for glioblastoma, which is typically delivered over the course of three to six weeks, treatment with proton beam therapy for the study was conducted in one to two weeks.

"I am hopeful that this is the first step of many where we can continue to move the needle and allow patients to live longer and live well," says Dr. Vora. "The goal is to improve the outcomes for our patients allowing them to spend more time with their families."

Nadya's story

2022 was a tough year for Nadya El-Afandi. She was on the verge of celebrating a long but successful battle with breast cancer.

"Out of the blue, I had a seizure. I went to the hospital, they did an MRI. After additional tests they told me the news: 'You have a glioblastoma,'" recalls Nadya. She asked her doctor if she should continue her breast cancer treatment. "He said, 'No'-meaning the glioblastoma would kill me before the breast cancer."

Nadya was not about to give up.

Nadya is a wife and mother of four children. She lives just outside of Rochester, Minnesota. "My children said to me, 'Mom, you're a unicorn. Of course you'll live.' My mother has had a number of medical conditions and we never expected her to live this long. And she's still alive and with us," says Nadya. "My children have also said, 'You've got grandma's blood in you. You will live.'"

Nadya is receiving care at Mayo Clinic in Rochester. That's where she learned about a new clinical trial called SAGA, or stereotactic ablative radiation treatment for glioblastoma. The phase 2 clinical trial is building upon Dr. Vora's research and studying a larger group of patients. The study is being led by Dr. William Breen, radiation oncologist at Mayo Clinic in Rochester.

It has been 15 months since Nadya began treatment for glioblastoma. So far, there is no sign the glioblastoma has returned. "Nadya has already exceeded the time that's expected time to have a tumor recurrence, and she continues to do well," says Dr. Breen. "Nadya is beyond some measures of what the average, overall survival time would be."

While Nadya's progress in encouraging, Dr. Breen says it is important to note that it is too early to draw any conclusions about safety or efficacy of this approach to treatment until the study is completed.

Meanwhile, Nadya is focused on living her life to the fullest. Fifteen months after undergoing treatment, Nadya embarked on an adventure to Hawaii, where she spent time taking helicopter tours, snorkeling and hiking.

Related articles

• Breakthrough in treatment approach showing promise in the fight against glioblastoma, the deadliest and most aggressive type of brain cancer
• (VIDEO) Focus on hope: Brescia’s Story
• All-Star pitcher Liam Hendriks shares how he closed out cancer at Mayo Clinic in Arizona
• Cancer is tough. Evelyn Owens is tougher
• https://cancerblog.mayoclinic.org/2021/12/21/glioblastoma-in-older-adults-improving-survival-and-quality-of-life/
• https://cancerblog.mayoclinic.org/2024/05/15/technology-clinical-trials-offer-hope-after-glioma-diagnosis/

The post (VIDEO) Breakthrough in the fight against glioblastoma appeared first on Mayo Clinic News Network.

At 20 years old, Brescia Dover was ready to take on the world.

She was on her way to achieving her dream of being a professional photographer.

Everything was going according to plan when her dream came to a halt. Brescia was diagnosed with cancer. With her plans for her future pushed aside, Brescia's focus was now on her health and hope.

It's an unexpected chapter facing an increasing number of adolescents and young adults diagnosed with cancer.

Watch: Focus on hope: Brescia's Story

Journalists: Broadcast-quality video (2:31) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Brescia's dream

At 4 years old, it was clear Brescia Dover had a flare for creativity. She readily admits she was never one to miss an opportunity to play dress-up, draw pictures, or tell a story.

"Being creative has always been at the core of what I do," she says. Early on she developed a love for photography and videography. Brescia's dream was to pursue a career that allowed her to put her creative energy to work.

After high school Brescia's passion led her to college to study film and media production. She even traveled to Italy to study abroad. After her Italian adventure, Brescia returned to the U.S. to finish college. First, she went to her doctor for her annual checkup.

"I lived a really healthy, balanced lifestyle," says Brescia. "My doctor found swelling on the side of my neck. I hadn't noticed the swelling and didn't have any symptoms." Brescia was sent for an ultrasound followed by a surgical biopsy.

The diagnosis - cancer

The surgical biopsy revealed Brescia had Hodgkin lymphoma, a rare type of blood cancer. "Being diagnosed with cancer at 20 years old was so scary and I wouldn't wish that on any 20-year-old," says Brescia. "I think about the young version of me who just found out she had cancer, and I just wish I could give her a hug."

Hodgkin lymphoma is a type of cancer that begins in the lymphatic system, which is part of the immune system. Brescia says the news came as a shock because she felt healthy and had no family history of cancer. "It felt like there was something I could have done to prevent it, but I learned that there's nothing I could have done," says Brescia.

Being a young adult with cancer

"When I was going through college and diagnosed with cancer it was not what I was expecting," says Brescia. "Being a young adult with cancer was very hard and challenging. It is scary and can be very frightening."

At 20 years old, Brescia falls into a group of patients referred to as adolescents and young adults with cancer. AYA patients are between the ages of 15 and 39. Experts says AYA patients face a distinct set of challenges.

"One of the reasons this age group is so important is based on their life stage; the things they uniquely face, like body image, disruption in school and work, financial challenges, feeling isolation," says Dr. Allison Rosenthal, with the Mayo Clinic Comprehensive Cancer Center.

Doctor and cancer survivor

Dr. Rosenthal knows firsthand the challenges AYA patients face. She was diagnosed with leukemia during medical school. "I had leukemia in medical school. There were a lot of missed opportunities in my care to recognize the issues that I might face as a 24-year-old woman," explains Dr. Rosenthal.

Putting her experience into action, Dr. Rosenthal championed Mayo Clinic's Adolescent and Young Adults with Cancer program. The program is tailored to meet the unique needs of AYA patients to include medical care, fertility concerns, social and relationship issues, school and work concerns, and the personal and emotional impact of cancer in this age group.

Brescia underwent about four months of chemotherapy treatment under the care of Dr. Rosenthal. "She did a beautiful job of explaining to me what the process was going to look like and what my treatment plan was going to look like. Because I'm so young, she walked me through the whole process," says Brescia.

Cancer-free and focused on the future

After her cancer treatments, Brescia returned to college and got her degree. She the started her own marketing agency providing social media management, videography, photography, and brand development with her personal creative touch. She also celebrated her five-year anniversary of being cancer-free.

"I also have a podcast called the Checkered Jaguar where I get to have incredible conversations with people, share their stories and connect people who may be going through similar challenges that I went through," says Brescia. "We're all in this journey together and just being open and vulnerable with my journey, as challenging as it may be, I feel like it connects me to people all around the world."

If you are someone you know would like to learn more about the Mayo Clinic Adolescent and Young Adults with Cancer Program please click this link or email us at arzayacancerprg@mayo.edu. You can also reach us at 480-574-1341.

Related articles:

• Mayo Clinic Cancer Center launches program for adolescents and young adults
• Meeting the unique needs of adolescents and young adults with cancer
• Adolescent & Young Adult (AYA) Cancer Support Group
• All-Star pitcher Liam Hendriks shares how he closed out cancer at Mayo Clinic in Arizona
• Cancer is tough. Evelyn Owens is tougher
• (VIDEO) Harnessing the power of innovation and a patient’s will to survive
• Jessie’s Journey

The post (VIDEO) Focus on hope: Brescia’s Story appeared first on Mayo Clinic News Network.

Blink and you'll miss Cheryl Robinson going in and out of rooms and preparing each for patients. Her speed is matched by her dedication as a volunteer and the compassion shown toward those seeking care on the Hematology/Oncology floor in Florida.

A former commercial insurance professional, Cheryl’s journey took a heartfelt turn when she became a caregiver to her husband, Jim Robinson. Their love story, rooted in shared struggles and triumphs, inspired Cheryl’s commitment to volunteerism at Mayo Clinic, where Jim once received his care.

"I just remember walking into the clinic the first time and thinking, 'Wow, when I retire, I want to volunteer at Mayo and wear that smock,'" says Cheryl.

Cheryl and Jim’s bond was fortified through adversity. Jim, who bravely navigated the challenges of global aphasia and leukemia, found solace and expression in drawing. His artwork became a symbol of hope for Cheryl, who supported him unwaveringly. The couple’s daily routine, punctuated by Jim’s 7 a.m. drawing sessions, was a testament to their resilience.

Volunteering at Mayo Clinic

The loss of Jim in the fall of 2023 left a void in Cheryl’s life, but it also planted the seeds of a new purpose. After retiring in January 2024, she followed her dream and became a Mayo Clinic volunteer.

"Going to work was an outlet for me, and being a caretaker gave me a feeling of being appreciated,” says Cheryl. "I knew I needed those things in my life, so to find that volunteering at Mayo Clinic has been fulfilling."

Cheryl’s presence on Mangurian 3, where she volunteers four hours weekly, is more than just a helping hand; it’s a legacy in the making. Her tasks are straightforward yet vital: prepping rooms, stocking supplies and cleaning. These actions are reminiscent of the care she saw while taking Jim to appointments.

"Over the years, I would see Cheryl with her husband while he went through treatment for leukemia, then follow-ups when he went into remission," says Sikander Ailawadhi, M.D., Hematology/Oncology. "I've seen Cheryl transform from her husband's caretaker to really providing care and service to our patients and staff. It's a remarkable and selfless gift."

Staff recognize her dedication, and she finds joy in the difference she makes, honoring Jim’s memory and serving others. As she moves through Mayo Clinic, memories of Jim, especially her interactions with his former care team members, stir deep emotions and strengthen her resolve to serve.

About Mayo Clinic volunteers

Mayo Clinic Volunteer Services is a group of talented, giving and compassionate people who offer comfort and support to Mayo Clinic's patients and visitors.

Apply to become a Mayo Clinic volunteer.

The post Cheryl Robinson volunteering on the same floor where her husband received cancer care appeared first on Mayo Clinic News Network.

If talking were an Olympic sport, Marty Kedian would be a gold medal winner.

After undergoing a history-making larynx transplant at Mayo Clinic in Arizona, the Boston-area native is back home drawing lots of attention with his gift for gab. Marty was greeted with a spirited welcome home celebration including family, friends and a pack of news reporters, all abuzz with excitement to hear his voice for hope.

Watch: Larynx transplant patient inspires hometown with his voice for hope

Journalists: Broadcast-quality video pkg (1:30) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Silenced by cancer

For the past decade, Marty battled a rare form of laryngeal cancer called chondrosarcoma.

"I had dozens of surgeries and treatments that, over the years, took a toll on my larynx. After the last surgery, I woke up and my voice was gone," says Marty.

The larynx, also known as the voice box, is located in the throat. Its main functions are helping people to speak, swallow and breathe.

"I had to get a tracheostomy tube implanted to help me breathe, and since then, my quality of life went downhill. People would look at me like I was strange," says Marty. "I got to the point I just didn't want to leave the house anymore."

Determined to find a way to get her husband's voice back, Marty's wife Gina scoured the internet for solutions. Her search led her to Dr. David Lott and Mayo Clinic's Larynx and Trachea Transplant Program.

Dr. Lott and his team were conducting the first clinical trial in the U.S. on laryngeal transplantation. "I applied as a candidate for the program and got accepted. They told me it wouldn't be easy, but I was not going to give up," says Marty.

The groundbreaking larynx transplant

A team of multidisciplinary doctors, including six surgeons, performed the 21-hour transplant on Feb. 29. The first step was to remove Marty's larynx.

"Our first priority was to remove the cancer," explains Dr. Lott. "When we were confident the cancer was gone, we then focused on transplanting the donor larynx."

Laryngeal transplantation is a rare procedure that has been performed only a handful of times in the world. Marty's case was the third total larynx transplant in the U.S., and the first known case performed as part of a clinical trial. Dr. Lott hopes the clinical trial will allow his team to scientifically investigate the procedure to prove it is a safe and effective option for patients.

The Mayo transplant is also the first known case in the world of a larynx transplant performed on a patient with an active cancer. Doctors were able to proceed with the transplant because Marty was already on immunosuppressive therapy from a previous kidney transplant.

"Having a patient with an active cancer who already had his own immune suppression allowed us to do the transplant safely without introducing additional risk in a way that has rarely, if ever, been done before," says Girish Mour, M.B.B.S., medical director of the program. 

Currently there are tens of thousands of people worldwide who are living without a voice box, mostly due to trauma or cancer. According to the American Cancer Society, it is estimated there will be 12,650 new cases of laryngeal cancer in 2024. Dr. Lott says many of those patients will be among the highest at risk of losing their larynx.

Breaking the silence

In just over four months after his surgery, Marty had regained full ability to swallow foods, was making progress learning to breathe on his own again and speaking with his voice at 60%.

"I was able to talk to my 82-year-old mother on the phone," says Marty. She could hear me and understood every word I said. It is amazing."

"It is remarkable," says Dr. Lott. "Marty has exceeded all of our expectations. I didn't expect him to be eating a hamburger this soon after a larynx transplant, if ever. It is truly amazing."

Welcome home Marty

Marty and Gina celebrated the successful transplant with an extended road trip on their way home. "We wanted to take a moment and appreciate where this journey has led us and where we are today," says Marty.

The couple had already made a visit to the Grand Canyon. After leaving Phoenix, they stopped in San Diego to see the Pacific Ocean, visited the Golden Gate Bridge, and got a glimpse of Mount Rushmore and Niagara Falls.

"It feels so amazing to be able to talk to anyone I meet on the street," says Marty. I will be forever grateful to Dr. Lott and Mayo for giving me my life back. I am also deeply grateful for the generosity of my organ donor and the donor family. They are the true heroes of this story."

When the couple arrived home in Haverhill, they were greeted by a cheering crowd of family, friends and reporters all eager to hear his voice.

Marty Kedian talks with Boston Media on Aug. 1, 2024

"I will share my story with anyone who wants to hear it," says Marty. "My job right now is to heal up and get my voice back 100%. My next job will be to reach out to as many people as I can and let them know they can do it too."

The post Larynx transplant patient inspires hometown with his voice for hope appeared first on Mayo Clinic News Network.

On Feb. 29, Marty Kedian made history by successfully undergoing a groundbreaking surgery at Mayo Clinic that is providing hope to thousands who have lost their voice and ability to swallow and breathe on their own due to diminished laryngeal function or total loss of their larynx.

This is the third known larynx transplant in the U.S. and the first known case performed on a patient with an active cancer as part of a clinical trial. It is also Mayo Clinic's first total larynx transplant. The multidisciplinary team, including six surgeons, was led by Dr. David Lott, chair of the Department of Otolaryngology (ENT) - Head and Neck Surgery/Audiology at Mayo Clinic in Arizona. Dr. Lott also leads Mayo Clinic's Larynx and Trachea Transplant Program.

Experts say the larynx transplant at Mayo is a pivotal milestone in making the rare procedure available as a scientifically proven, safe and effective procedure for a wider population.

For Marty, it marks the beginning of his quest to break the silence on laryngeal transplantation.

A multidisciplinary team, including six surgeons, conducted the 21-hour transplant. Four months after surgery, Marty has regained use of his voice and his ability to swallow and breathe on his own, exceeding the transplant team's expectations.

Watch: Breaking the silence: Man achieves dream of getting his voice back in world's first known total larynx transplant on a patient with an active cancer as part of a landmark clinical trial

Journalists: Broadcast-quality video pkg (5:15) in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Silenced by cancer

"I love to talk to people everywhere I go," says Marty. "I'm that guy at the baseball game who doesn't know anyone sitting around them. And by the end of the game, I'm friends with everyone in my section."

Marty's world changed in 2013 when he went to the doctor after noticing he was having trouble swallowing his food. "Food was getting caught in my throat. I thought I had allergies. I didn't really think anything of it," recalls Marty.

A series of tests revealed Marty had a rare form of laryngeal cancer called chondrosarcoma. Doctors told Marty he needed surgery. "It was a shock," recalls Marty. "It was devastating. I wasn't going to die, but I had a job that required me to talk to people all day long." For 35 years, Marty worked at a local print shop speaking with customers in Haverhill, Massachusetts, where he lives with his wife, Gina, and their family.

Marty underwent his first surgery in 2014. Over the next 10 years, dozens more followed, reducing Marty's voice to a raspy whisper. No longer able to breathe on his own, Marty underwent surgery to have a tracheostomy tube inserted so he could breathe through a hole in the front of his neck.

"Everywhere I went, the first thing people would ask me is, 'How many cigarettes did you smoke a day?' I never smoked a cigarette in my life," says Marty. "People would immediately shut down and back away from me. After a while, I just didn't want to go out anywhere. I was alive, but I wasn't living." Marty was eventually told his last option was a total laryngectomy, or removal of his voice box. He declined. "I didn't want a laryngectomy. I wanted to find a way to get my quality of life back," says Marty.

"I just had my first grandchild. I wanted to be able to talk to her with my own voice, play with her in the yard and take her to baseball games and breathe normally. Gina knew I was already depressed and out of my mind. She kept saying there had to be another way. She went online, and that's when she found Dr. Lott."

Finding hope at Mayo Clinic

Thousands of miles from Marty's home, at Mayo Clinic in Phoenix, Dr. Lott was leading a team of scientists researching laryngeal restoration and transplantation. Dr. Lott is an ear, nose and throat surgeon who specializes in laryngeal surgery. For the past two decades, Dr. Lott and his team have been investigating ways to restore and save a person's voice and laryngeal function.

"I set my path on becoming a laryngeal surgeon and researcher to build a program that is pushing the boundaries of science forward," explains Dr. Lott.

"Nobody really thinks of their larynx until it's gone," says Dr. Lott. "Then your ability to speak, breathe and swallow is gone, and you are left breathing through a hole in your neck. It is very isolating, and many become a shell of who they used to be. I wanted to find a way to help restore a person's quality of life."

In 2016, Dr. Lott's program was granted approval to conduct the first clinical trial in the U.S. on laryngeal transplantation. "Until now, laryngeal transplants have been done as one-offs," says Dr. Lott. "This clinical trial allows us to conduct a true scientific investigation aimed at thoroughly researching the safety and efficacy of laryngeal transplantation as a trusted option for patients."

One of the biggest challenges to advancing laryngeal transplantation as an option for cancer patients like Marty has been the risk associated with the use of immunosuppressive therapy. Transplant patients are given immunosuppressive drugs to lower the body's immune response, which reduces the risk of organ rejection. However, immunosuppression also increases the risk of the cancer spreading. Marty was already on immunosuppressives due to a kidney transplant years ago.

"Having a patient with an active cancer who already has his own immune suppression allowed us to do the transplant safely without introducing additional risk in a way that has rarely, if ever, been done before," says Girish Mour, M.B.B.S., medical director of the program.

Inside the operating room

Removing the cancer was the surgical team's main priority. "First, we removed Mr. Kedian's cancerous larynx," explains Dr. Lott. "Then, with the confidence of our team that the cancer was gone, we focused on the transplant. The entire procedure went better than we expected."

In addition to the larynx, surgeons transplanted the pharynx, upper trachea, upper esophagus, thyroid and parathyroid glands, blood vessels, and nerves.

Marty's road to recovery

Four months after his transplant, Marty regained 60% of his voice. Doctors say it will continue to improve as he heals over the next year. He has also regained the ability to swallow and breathe on his own. "It is truly amazing," says Marty. "Dr. Lott and the team at Mayo have not only given me my voice back, they've also given me my life back."

Speech and swallow therapy at Mayo has been a significant part of Marty's recovery.

"Marty's progress is remarkable," describes Dr. Lott. "He is eating hamburgers, macaroni and cheese, almost anything with no problem. His breathing also continues to steadily improve." Doctors plan to remove the tracheostomy tube when Marty regains full function of his ability to breathe on his own.

A paper by Dr. Lott on the case was published July 9 in the peer-reviewed medical journal Mayo Clinic Proceedings.

"The holy grail for managing laryngeal cancer"

"The case signifies a monumental breakthrough," says Dr. Marshall Strome, who performed the world's first successful larynx transplant in 1998. "It represents the future of laryngeal transplantation where every patient needing a total laryngectomy will have the option of a reconstruction that allows them to maintain their quality of life."

Dr. Lott did some of his early training under Dr. Strome. Since then, Dr. Strome has remained a trusted mentor to Dr. Lott. In a full circle moment, Dr. Strome was present when Dr. Lott performed the transplant at Mayo in February.

"With the clinical trial underway, Dr. Lott and his team are positioned to advance the field in ways no other program can currently achieve. The Mayo team has discovered the holy grail for managing laryngeal cancer, which I believe will come to fruition by the end of this decade," says Dr. Strome.

Breaking the silence on laryngeal transplantation

Less than five months after surgery, Marty and Gina are excited to return home to Massachusetts. "We couldn't have done this without everyone's love and support," says Gina.

"I will always be grateful to the team at Mayo and especially for the generosity of my organ donor and the donor family," says Marty.

Dr. Lott's clinical trial is approved to perform additional larynx transplants in the coming years.

Marty is looking forward to doing what he loves most — talking to family, friends and everyone else he meets. He is especially looking forward to talking with his granddaughter, Charlotte.

"I will be reading her lots of bedtime stories," says Marty. Meanwhile, Marty also is planning to share his own story to inspire others.

"My first job is to get better," says Marty. "My next job will be to tell everyone they can do it too."

Additional resources:

• Mayo Clinic marks medical milestone with world’s first known successful total larynx transplant performed in a patient with an active cancer as part of a clinical trial 
• Research prepares for Mayo's first larynx transplant

The post Breaking the silence: First known total larynx transplant on a patient with active cancer as part of landmark clinical trial appeared first on Mayo Clinic News Network.

Melissa Neuman dreaded getting mammograms. Her small, dense breasts made the screening exceptionally uncomfortable and painful. So Melissa put off getting an annual mammogram until she felt she couldn't delay any longer.

For about five years, Melissa had been plagued with a nagging pain just under her left breast. In February 2023, a recommendation from a friend led her to seek care from Jessica Johnson, an OB-GYN nurse practitioner with Mayo Clinic Health System in Owatonna, Minnesota.

"She took me seriously, was curious and determined to find out what was causing the pain," says Melissa, who lives in Owatonna and works as an activities assistant at a local assisted living and memory care facility.

During their appointment, Johnson noticed that Melissa hadn't had a mammogram for several years. When Melissa explained why she was reluctant to be screened, Johnson suggested she have a breast MRI.

"I'd still be getting screened, but with less pain," says Melissa. "So I said, 'Let's do it.'"

The MRI revealed an area of concern. Johnson recommended that Melissa have a biopsy, but it would require a mammogram first. That's when Melissa met Amanda Steinberg, a radiology technologist in Owatonna. She was just the person Melissa needed.

Overcoming mammogram fears, pain

"Mammograms aren't a favorite activity for women," says Steinberg. "While it's a preventive screening, we have mammograms to make sure we don't have breast cancer. It's scary."

At 35, Steinberg had her own scare with a mammogram that showed an area of concern, so she understands her patients' fears and reluctance. She strives to set them at ease, explain simply and clearly what she's doing, take their mind off the compression and be as quick and effective as possible.

That understanding and empathy resonated with Melissa. So did Amanda's technique. Steinberg had learned that mammograms can be less painful if the patient doesn't reach forward to grip the handles on the machine.

"When you grip or make a fist, your pectoral muscles tense up. Squeezing a muscle that is already tight makes the pinching feeling of compression feel worse," she says.

That clenching also can create an undesirable "C" shape on the image. So instead, she tells patients not to raise their arms and grip but to let them hang relaxed by their sides.

"Women have told me how much better it is," says Steinberg.

Melissa agrees. "She was amazing, and I will never forget her, and I wish I'd found her sooner," she says.

A closer look reveals a tumor

The mammogram and a subsequent ultrasound were inconclusive, so Johnson ordered a biopsy that was performed on Dec. 6, 2023. Two days later, Melissa learned that the biopsy had confirmed an invasive ductal carcinoma tumor positioned right up against her chest wall.

"Suddenly, everything was insane," says Melissa.

The whirlwind of preoperative tests and appointments began, and she was informed of her options: a lumpectomy, radiation or a single or double mastectomy.

After talking through the options with her husband, Rick, she opted for a double mastectomy.

"I didn't want to undergo MRIs every six months or worry for the rest of my life," says Melissa.

Melissa met with Mayo Clinic Health System surgeons and had a double mastectomy on Jan. 30. After one night in the hospital, she was home and recovering with help from Rick and their children, Sarah and Joshua.

Before starting her on hormone-blocking cancer medication, Melissa's oncologist, Mina Hanna, M.D., ordered a bone density scan. Melissa was delighted to learn that Amanda would conduct it since she had such a positive experience with the mammograms.

"After I've done mammograms for a patient, I usually don't know their results or even see them again," says Steinberg. "Doing Melissa's bone density scan felt like it was meant to be that we'd be on this journey together."

Genetics, recovery and a night at the ballpark

At the start of her breast cancer journey, Melissa was surprised to learn her diagnosis because she didn't know of any women in her family who had breast cancer. Tests revealed the cancer was both estrogen and progesterone-positive but negative for BRCA 1 and 2 markers. Melissa wanted to learn more, so she underwent in-depth genetics testing, none of which indicated a genetic predisposition for breast cancer.

"I wanted to do extra testing so my daughter and son would have that information," says Melissa. She's now taking the hormone-blocking cancer medication and continuing her recovery.

"Everyone on my care team — Jessica, Amanda, Dr. Hanna, my surgeons and everyone else — has been so great," she says.

To celebrate her progress, Melissa threw out the first pitch at Cancer Survivors Night, sponsored by Mayo Clinic Health System, at a recent Mankato MoonDogs baseball game.

"This was my first outing since my surgery, and it was so fun and inspiring. I just hoped I'd throw a good pitch," says Melissa.

Continuing to advance, refine mammograms

Amanda is proud of her role in helping detect Melissa's breast cancer — and that of her other patients.

"I've always wanted to learn and do new things with mammography," she says.

She is particularly excited about new 3T MRI equipment in Owatonna, which will allow for MRI biopsies and more advanced imaging.

"This equipment will provide more support for breast procedures," she says. "And more patients will be able to stay close to home for first-rate care without traveling to Mayo Clinic in Rochester."

Melissa adds that her experience is a good example of why it's important for doctors and others working in healthcare to take women's health concerns seriously and provide them with options for preventive health scans and healthcare.

"If I didn't have a provider who listened and came up with a breast MRI to screen for breast cancer, we wouldn't have found it this early," she says.

This article first published on the Mayo Clinic Health System blog.

The post How a different mammogram experience led to lifesaving cancer diagnosis appeared first on Mayo Clinic News Network.

Watch: Lymphedema: A lesser-known breast cancer side effect with lifelong impacts

Journalists: Broadcast-quality video (2:39) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

"I thought once I rang that bell, it was over. But it wasn't over," says Sonya.

A few months after completing targeted radiation treatment for breast cancer, Sonya noticed swelling in her lower arm.

"I wasn't sure what it was. And they told me, 'Hey, you need to come into the emergency room. It might be an infection.' And (I) went to the emergency room, and they're like, 'No, it's lymphedema,'" says Sonya.

Lymphedema is a chronic and debilitating disease in which tissue swelling is caused by an accumulation of fluid that's usually drained through the lymphatic system.

About 40% of people who undergo breast cancer surgery where their lymph nodes are removed will develop lymphedema.

"It was painful. It was hard to sleep because it just felt like my arm was thumping all the time. I noticed, particularly at the end of the day, like, I typed a lot for my job. And I noticed my arm at the end of the day would swell up," says Sonya.

"To be honest with you, it was a little disheartening because I thought, 'Hey, this is over because, you know, you got the cancer. The cancer is gone, but now you have to live with the aftereffects.'"

But she didn't have to live with it. Sonya did some research and reached out to her Mayo Clinic care team. She found out about a surgery to help patients with lymphedema.

"When I met Sonya, she already had stage 2 disease," says Dr. Vahe Fahradyan, a Mayo Clinic plastic surgeon who specializes in breast reconstruction and lymphatic reconstruction. "In her particular case, because she had some remaining functional lymphatic vessels, we decided that we're going be able to do lymphovenous bypass surgery." 

Using special dye to identify the lymphatic pathways, surgeons use small incisions to reroute the lymphatic system by connecting tiny lymphatic vessels to tiny veins, creating a detour around the damaged part of the lymphatic system. This new connection restores the body's ability to drain lymphatic fluids.

While lymphedema is considered an incurable disease, getting outcomes like Sonya's, where patients can easily manage the symptoms and improve their quality of life, is the ultimate goal.

"My symptoms are so minimal, says Sonya. "I've gotten back to working out, and I'm able to swing kettlebells, which I couldn't do before. And my arm does not swell up at the end of the day. So that's amazing to be able to sleep and sleep better, and there's no more pain."

Dr. Fahradyan says one major key to achieving that is early diagnosis.

"The message is that if you notice that you have arm swelling or breast swelling or the lower extremities, it is not normal. You don't have to live like this," he says.

The post Lymphedema: A lesser-known breast cancer treatment side effect with lifelong impacts appeared first on Mayo Clinic News Network.

When Walter "Dick" Whetstone leaves his home in central South Carolina, he's usually wearing a paw print or, at the least, his school colors of orange and purple. The proud Clemson University alumnus didn't realize that what he wore to an appointment would earn him a nickname and a chance to help others.

In late 2020, Dick began losing weight. At first, it was on purpose, as he was making diet and exercise adjustments to keep up with his grandchildren. But when the changes stopped, and his weight continued to drop, he went to his family doctor for answers.

Tests confirmed pancreatic cancer, and by July 2021, Dick was receiving chemotherapy in South Carolina. Doctors estimated he had four to six months to live.

"I remember asking my wife for a piece of paper so I could write down who would be pallbearers at my funeral," Dick says.

Complications from an open-heart surgery several years earlier led him to experience cardiac arrest four times during treatment. He explained that surgery to remove a tumor was called off in the operating room and that the physician recommended palliative care.

"If I'm going down, I'm going down fighting," Dick says.

That's when he began researching options for pancreatic cancer treatment. He found information about Mayo Clinic and called the operator.

"Within 10 days of me calling the number, I had connected with the care team at Mayo Clinic in Florida and was in Jacksonville for tests and appointments," Dick says. "Within the month, I was preparing for surgery."

He packed a Clemson polo for luck and to show his school spirit. The paw print became a conversation piece when Dick met Dr. John Stauffer for his preoperative appointment.

"Dr. Stauffer walked in the room, saw my shirt and asked, 'Are you one of those Tigers?'" Dick recalls. "We talked about how he was an Ohio State graduate, and before I left, he nicknamed me 'Tiger.'"

Schedulers found an earlier surgery option for Dick so he didn't have to commute home and back to Florida. When he was brought into the operating room, the words he exchanged with Dr. Stauffer are ones he'll remember for the rest of his life.

"He came up to me and said, 'Tiger, we're all on the same side today. I'll see you on the other side,'" Dick says.

The procedure was successful. In addition to removing cancerous tissue, his care team, including Dr. Byron May, delivered intraoperative radiation therapy using a mobile linear accelerator. Dr. May explains that radiation was the best approach because several critical arteries and veins supplying the liver, stomach and intestines cannot be removed, but are often affected by pancreatic cancer.

"Dr. Stauffer and I confer on each patient, determining the precise target zone to be safely irradiated, and follow that plan once the surgical team has removed as much of the cancerous tissue as possible," Dr. May says. "This teamwork and collaboration before, during and after surgery assures maximal success for our patient."

Motivated to get back to his family, Dick started walking with his nurses around the halls. For a patient Dick's age, hospital stays after surgery range from 15 to 18 days. Dick exceeded expectations and was cleared by his team after five days.

In the time since his procedure at Mayo Clinic, Dick has worked toward renewing his pilot's license — once a dream he thought was gone due to his health. He spends more time with his family, including his grandchildren; working outside; and he's shared his journey with dozens of people in his community who have been diagnosed with cancer.

"Looking back, I could have given up a hundred times," Dick says. "When I started speaking with patients, I tell them, 'It's going to be rough, and you're going to want to quit — don't. Stay hopeful and determined.' That's been my message to 50 people over the last three years."

He often thinks about his conversation with Dr. Stauffer just before his procedure about being on the same team.

"It's an incredible feeling to know a group of people, who are focused on helping you and making you well again, and who say, 'We're all on the same team,' Dick says. "It's an amazing place to be."

The post Teamwork and a new nickname inspire patient through pancreatic cancer treatment appeared first on Mayo Clinic News Network.

Sylvester Pinckney is someone who knows a lot about teamwork. He was a star football player in high school and college; he and his wife, Sabrina, have raised a family together; and for more than 20 years, he has worked to promote the well-being of children throughout his community.

When Sylvester was diagnosed with follicular lymphoma in 2016, he knew he would have a team supporting him.

"When you have the opportunity to continue to live and fight for your family and your children, you have got to do it," Sylvester says.

He went to Mayo Clinic in Jacksonville, Florida, just a few miles from his home. Sylvester's care team treated the lymphoma with an autologous stem cell transplant, and his cancer went into remission for nearly seven years.

But in 2023, he began to feel fatigued and pain, which prompted him to visit his community physician. Tests determined that his lymphoma had recurred.

Watch: CAR-T cell therapy helps man continue community advocacy

"When Mr. Pinckney was evaluated, we worked very closely with his community oncologist in Jacksonville," Dr. Mohamed Kharfan-Dabaja says. "He was found to be a good candidate for chimeric antigen receptor-T cell therapy (CAR-T cell therapy), and we all agreed that this was the best course of action."

CAR-T cell therapy collects a patient's T cells, which normally help fight off infections, and genetically engineers them to identify and target cancer cells. Those cells are then infused back into the body.

"Cancer is a huge word," Sabrina says. "Thirty or 40 years ago, that was a death sentence word. But look where we've come from just (seven) years ago. CAR-T cell therapy was in its prototype stages, but who knew we'd walk this walk again and the prototype would address the very cancer that my husband has? That's a blessing within itself."

As he prepared for his infusion, Sylvester was comforted knowing his experience could help others understand and have confidence in the treatment.

"You're the person going through it, but you have others who can benefit from it," Sylvester says. "Through your journey, be able to have a voice and tell them it will be fine; trust the process and the science. And when you're a patient going through something like that, it is very important to have that family environment and family feel."

In the days, weeks and months after CAR-T cell therapy, Sylvester was monitored closely. He began to feel his strength and energy return. At 100 days posttreatment, his care team delivered the news: his cancer was in remission. 

"I believe in the bells that ring here every day," Sabrina says. "I believe in the doctors just walking the halls every day. The nurses down to the beautification staff, everyone I've ever come in contact with here, it is more than a job — it's a passion."

Sylvester shares that sentiment. His passion to positively affect the community and ensure the well-being of young people continues. Sylvester adds that the collaboration among healthcare professionals at Mayo Clinic and the Jacksonville community gives him hope for the future and gratitude for the present.

"Having a treatment that can change lives in your hometown is powerful," Sylvester says. "For me to be able to go home and come back is a blessing. I thank God that CAR-T was an option for me. I'm very grateful, and we have a family that has been blessed."

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