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1 hour ago by @SharingMayoClinic · View  

Remembrance Events at Mayo Clinic Give Family Time to Reflect and Share

Carol Mannell remembers her sister, Kathy VanHulle, as a woman who always loved meeting new people and having fun. Carol Mannell remembers her younger sister, Kathy VanHulle, as a woman who loved meeting new people and having fun. Carol recalls how, despite being in the midst of receiving care for a serious illness when she was at Mayo Clinic, Kathy would take time to strike up conversations with people sitting next to her in waiting rooms. She would ask them to write messages in a journal she carried with her. Kathy and Carol would sing together in her hospital room.

Kathy even convinced members of her care team at Mayo Clinic to get up and dance.

“We had a lot of fun. Everywhere Kathy went at Mayo, we’d talk, laugh and get people to do the happy dance with her,” Carol says. “She had a big personality.”

[...]

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SharingMayoClinic

19 hours ago by @SharingMayoClinic · View  

Quick Access to Stroke Experts Through Telemedicine Makes All the Difference for George Hoggard

GeorgeHoggard805b George Hoggard knows a thing or two about the importance of a rapid response. A former firefighter, the 78-year-old Titusville, Florida, resident spent the better part of his 42-year career teaching astronauts at the Kennedy Space Center how to escape to safety in the event of an emergency on the launch pad. He also was a member of the rescue team that would respond if something went wrong with a space shuttle mission.

So when his right eye suddenly began looking left while watching TV on a Sunday evening in April 2016, George knew something was amiss. When he began feeling nauseated, he told his wife, Rita, he needed to get to the hospital.  [...]

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3 days ago by @SharingMayoClinic · View  

After a Long, Long Wait, a Transplant, Gratitude and Goodbyes

Randy Marlow with two of his transplant nurses. When Randy Marlow checked into Mayo Clinic Hospital's Saint Marys Campus, he knew his hospital stay would be lengthy. He just wasn’t expecting it to last one year, seven months and 21 days.

As someone who needed dual heart and liver transplants, Randy knew the probability of two suitable donor organs becoming available at the same time was small. Moreover, his rare blood type, coupled with a buildup of antibodies from multiple blood transfusions related to prior heart surgeries, meant he would be incompatible with all but 10 to 20 percent of organ donors, according to his physicians.

So Randy, an avid outdoorsman who enjoyed snowmobiling back home in the Colorado Rockies, riding his ATV, and camping, shifted his perspective from action to endurance.

Patience became the operative word. "You have to take it day by day and wait for that right day, for the miracle," Randy says.  [...]

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amy hahn sattler

Jun 17, 2010 by @amy hahn sattler · View  

Teens + Mayo Health Education = new visual, colorful and engaging design

Mayo Clinic's teen patient education print materials have a new look. The goal of this new design is to help teens engage and take responsibility for their health care and lifestyle choices.

The new design includes:

  • Colorful pages
  • Age-specific photos and other visuals
  • Peer quotes
  • Key health messages
  • Short chunks of education content

Patient education specialists, designers and health care providers conducted research and used teen feedback to create the new look and tone.

To learn more about the Barbara Woodward Lips Patient Education Center click here

This post was submitted by Amy J. Hahn Sattler from the Section of Patient Education.

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mayajolley

maya_jol responded 4 days ago · View

I work at Seattle Children’s hospital and we are hoping to update (or develop a new) AYA cancer unit page. Ideally, this page would be attractive to our patients with educational materials, etc. located on it. Have you or your team found any more relevant information? I ask because this article is dated 2010. Do you know of any existing Mayo Clinic Cancer pages designed for teens? Thank you in advance for any information you [...]

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SharingMayoClinic

4 days ago by @SharingMayoClinic · View  

Former Airman, Stroke Survivor Tells of Life Punctuated by Commas

Former senior airman, R. Brady Johnson, survived a cerebral hemorrhage and stroke.When stroke survivor R. Brady Johnson first visited Mayo Clinic nearly nine years ago, his doctors didn't quite know what to make of him. Not only was his stroke, at age 31, unusual, but his post-stroke physicality surprised the team of neurologists he'd come to see.

It had been just over a year since Brady, who lives in Belvedere, Illinois, had a major stroke during a surgery to mitigate a cerebral hemorrhage. The stroke cost him the sensation in his right side, the ability to speak, to run, and a litany of other abilities. Yet, in the time between the stroke and visiting Mayo, the former senior airman for the U.S. Air Force and marathon runner had managed to coax his body to do things that his rehabilitation team initially said would be impossible.

[...]

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6 days ago by @SharingMayoClinic · View  

‘How’d We Get So Lucky?’ — Proton Beam Therapy Available at the Right Time for Jackson

Proton beam therapy was available at the right time for Jackson Fisher.

For two weeks, 14-year-old Jackson Fisher was plagued by headaches, double-vision, nausea and weight loss. His parents, Michelle and Patrick Fisher, weren’t sure what was wrong. But when Jackson came home one evening completely exhausted after lacrosse practice, they decided it was time to find out what was going on. The next day, they took Jackson to the emergency room.

What doctors found during that ER visit triggered a series of events the Fishers never could have anticipated and that eventually led the family to Mayo Clinic’s Proton Beam Therapy Program, where Jackson received treatment for a brain tumor.

“Every single person we’ve met at Mayo Clinic has been amazing, and we feel like we were meant to meet them,” says Michelle. “His doctors told us they were going to fight for Jackson. They’ve been forthcoming and explained things simply and honestly. I never second guessed his care. Being at Mayo Clinic has been the most positive experience of our lives.”

Turning to the experts

When Jackson first went to the ER in his hometown of Des Moines, Iowa, doctors there ordered a CT scan. The scan revealed a large mass in his brain. Due to the severity of his condition, Jackson was immediately flown via air ambulance to Mayo Clinic in Rochester, Minnesota. The next day he had surgery to relieve pressure in his brain. His care team also ordered a biopsy of the tumor to find out if it was cancer.

“We told his neurosurgeon, Dr. Daniels [David Daniels, M.D., Ph.D.], and oncologist, Dr. Rao [Amulya Nageswara Rao, M.B.B.S.], ‘Whatever you need to do, do it,’” Michelle and Patrick say. “It’s Mayo Clinic. We brought him to the experts to help him.”


"His doctors told us they were going to fight for Jackson. They’ve been forthcoming and explained things simply and honestly. I never second-guessed his care." - Michelle Fisher


The morning after surgery, Jackson was able to get up and walk. A day after that, he and his family went back home. But his medical odyssey was far from over. Based on the biopsy results, Jackson was diagnosed with a mixed germ cell tumor that had both cancerous and noncancerous cells.

“His doctors were happy about the diagnosis and told us they have a lot of experience with the tumor type, which responds well to chemotherapy,” says Michelle.

Taking a novel approach

JacksonFisher500Because not all of the cancer could be removed with surgery, Jackson had 18 weeks of chemotherapy, first at Mayo Clinic and then at his hometown hospital. Although the chemotherapy was effective, Jackson’s Mayo Clinic doctors wanted to further reduce the tumor size.

Ideally, they would have operated on it, but the tumor location made surgery too risky. So the family met with Nadia Laack, M.D., a radiation oncologist, who recommended proton beam therapy, a highly targeted type of radiation therapy. Jackson completed seven weeks of proton beam therapy of his spine and brain, a treatment that became available at Mayo Clinic's Rochester campus in June 2015.

“How’d we get so lucky?” asks Michelle. “Proton beam therapy was available at Mayo just in time for my child. Otherwise, we’d have had to relocate across the country, which would have been a huge stress. We were able to drive the three hours home on weekends during his treatment.”

Getting back to life as usual

Jackson, a high school freshman, Skyped with school during his treatment and returned to classes when it was over. Now he’s excited to be back to his normal life, playing lacrosse and basketball, hanging out with friends, and spending time with his brother and his pets.

“Jackson has a life-threatening brain tumor, but other than his hair loss, you wouldn’t know he has cancer,” says Michelle. “We’re extremely fortunate that we could go to Mayo Clinic, and we will forever be indebted to his doctors and everyone else who cared for him.”

Even though Jackson has finished his treatment at Mayo Clinic, the Fisher family’s ties to Mayo Clinic remain strong.

“We’re really going to miss Randy McKeeman, the child-life specialist, and Nancy Heinzelman, the patient experience coordinator, in the Proton Beam Therapy Program,” says Michelle. “We instantly bonded with them. They’re so genuine and charismatic and truly are exactly where they should be to help children through this process. We’ll go back to visit even when we don’t have to because we made fast friends and will miss so many people.”


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SharingMayoClinic

Thu, Mar 31 at 1:45pm CDT by @SharingMayoClinic · View  

Lung Cancer Patient Survives With Help of Novel Procedure, Celebrates Next Generation of Innovation

Raegan Cury

Raegan Cury didn’t worry at first when she developed a cough in early 2002 that wouldn’t go away. She was a healthy young woman, athletic, a former gymnast, and her initial chest X-ray showed what looked like pneumonia.

Even her husband, a pulmonologist, wasn't too worried, until she received a surprising diagnosis. “I never thought it was going to be bronchoalveolar lung cancer,” says her husband, Dave Cury, M.D.

Raegan, who lives in Atlantic Beach, Florida, had surgery to remove the cancer and woke up with just one lung, due to the extent of the disease. The surgery was followed by four rounds of chemotherapy, but in 2003, tests found cancer nodules throughout her remaining lung. 

That was a dark period for Reagan and her family. She and her husband started their two young children, Chandler and Davis, in grief counseling.  [...]

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muhammadfaizan

Muhammad Faizan responded Sat, Jun 18 at 3:01pm CDT · View

Here's an easy to use Molarity Calculator for you to calculate molarity, mass and volume. It’s a free tool to calculate concentration of solution.

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SharingMayoClinic

Sat, Jun 18 at 8:18am CDT by @SharingMayoClinic · View  

Family Tradition Inspires New Chimes for Plummer Building Carillon  

Carillonneur Jeff Daehn and Dr. David Daugherty with the carillon recording. When David R. Daugherty, M.D., was growing up in Rochester, he walked to Central Junior High School with his father, Guy Daugherty, M.D., a Mayo Clinic cardiologist.

"Since our school was on dad’s way to the clinic, he made a tradition of walking with each of us kids when we reached junior high age," says Dr. Daugherty, when went on to join Mayo Clinic himself, as a psychiatrist. "We checked our progress by the bells in the Plummer Building. Hearing the chimes helped us get to school on time."

That youthful memory led to an idea: Could the carillon have a set of chimes that are unique to Mayo Clinic?  [...]

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susanashephard

Aug 24, 2011 by @susanashephard · View  

Living With Myelofibrosis (Part 2 of a 4 part-series)

Patricia Wagnerby Patricia Wagner

In this entry, I’ll talk about how the disease started and a look into how I was affected. Bear in mind that every case is different and you shouldn’t conclude that you’ll go through the same things I have. My case, in fact, is more dramatic than most.

I first suspected that something was wrong when I began to lose some of my mental quickness and my physical energy. I also had many other symptoms: bleeding gums, bloodshot eyes, flushed complexion, and abnormally long periods. I saw different specialists for each problem. Then a blood test ordered by my internist revealed very high red, white, and platelet counts. Referred to a hematologist/oncologist in my health plan, I was studied periodically by him but received no treatment. He thought perhaps I had Polycythemia Vera but wasn’t sure. [...]

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traceyb414

traceyb414 responded Fri, Jun 17 at 5:08pm CDT · View

Hi Sue - I would also like to connect you with you and talk about your experiences. Please let's connect

moke

moke responded Fri, Jun 17 at 9:30pm CDT · View

Hi 🙂 My understanding is that ET and JAK2 are not hereditary. That can be pos and neg I guess :/ Mark

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SharingMayoClinic

Fri, Jun 17 at 4:53pm CDT by @SharingMayoClinic · View  

Difficult Diagnosis Interrupts Residency, Gives Young Doctor a New View of Patient Care

Natalie Ertz-Archambault, M.D. plans to apply for fellowships in hematology and medical oncology after uncovering the cause of her illness.Successfully finishing a medical residency is a significant milestone in any physician's career. But when Natalie Ertz-Archambault, M.D., graduated in June 2016 from the Internal Medicine Residency at Mayo Clinic's Arizona campus, the achievement felt particularly sweet.

"It was an incredible success for me, since I actually started my residency in 2012, completed four months, and then became too ill to work," she says. "At that time, I wasn't sure if I'd ever reach graduation."

[...]

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Thu, Jun 9 at 12:54pm CDT by @SharingMayoClinic · View  

An Answer for Luis – Surgeons Remove Polyp-Riddled Colon, Restore Function and Hope

Luis Coriano meets with his medical team. Deciding to undergo a surgery to remove your colon is not a decision to be taken lightly, but it was one that Luis Coriano faced earlier this year. And he and his family wanted to make sure they made the right call.

Luis is affected by a rare genetic disorder called familial adenomatous polyposis that causes thousands of polyps to grow in the colon and ultimately leads to cancer. He knew that a prophylactic surgery to remove the diseased organ was the only way to prevent cancer from ravaging his body.

As daunting as the surgery was, however, more worrisome to Luis, was what came after the surgery. Namely, living with a stoma and an ostomy bag.  [...]

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ktusing

Karl responded Fri, Jun 17 at 10:07am CDT · View

Thank you for posting Luis' amazing story at Mayo ! One procedure in 10 years is incredible. A family member of mine has the Attenuated version of this (AFAP) which onsets later in life, normally late 40s, as opposed to early-mid 30s for classic FAP. I am just amazed at the surgeons ability to restore hope in patients through these advanced techniques. Truly thankful for that! It is important for patients diagnosed with FAP or [...]

Edited: 06/17/2016 @ 10:11am

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Wed, Jun 15 at 4:43pm CDT by @SharingMayoClinic · View  

Treatment to Slow a Quick Heartbeat Returns Jim Davis to His Fast-Paced Life

Jim Davis is back to an active life after cardiac ablation.For 10 years, Jim Davis had a rapid heartbeat. He was otherwise healthy, though, so Jim wasn't particularly worried about it. He blamed the quick heart rate on his morning coffee.

In time, however, the condition began to affect his daily life. Medication didn't seem to help. When Jim sought care at Mayo Clinic in Jacksonville, Florida, his doctor discovered an underlying heart disorder that had gone undiagnosed.

Doctors were able to address his heart problems with a procedure called cardiac catheter ablation.

Today Jim's heart is still in rhythm. The rest of his life picked up the beat. [...]

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iggeez1416

Aug 15, 2014 by @iggeez1416 · View  

Mystery Solved – Diagnosis Moves Patient from Frustration to Peace of Mind and a Plan

Karen Gibson at Mayo Clinic with her husband. I want to share my story to possibly help another person and to hopefully help others who are still facing their own health unknowns.

I struggled for years with extreme fatigue, major skin problems, muscle weakness, escalating eye issues, and a host of other unexplained symptoms. I moved to Georgia with more and more symptoms. I developed relationships with new doctors and developed new symptoms – seizures and heart-related syncope. I went to see a neurologist, who began to run tests. In the meantime, I had regular quarterly blood panels by my regular physician, who upon reporting to me by phone noted no irregularities. I was told time and time again to stop chasing a diagnosis. My family continued to watch my decline.

After running numerous tests, my neurologist could only ascertain that I may have had some mini-strokes. My neurologist referred me to a major university hospital. After two visits, and being practically laughed out of the place, I began to have serious doubts about my symptoms and began to believe the many specialists and psychologists who told me it was emotional response.  [...]

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frang

Fran G responded Sun, Jun 12 at 4:36pm CDT · View

Female - 67 yrs. old. I started having breathing problems Sept 2015. After a few weeks I had slurred speech. Went to the ER, no stroke - told me to go to my PC doctor. Made an appt with PC doctor and a cardiologist. The cardiologist is the one that dx me with Myasthenia Gravis. Went to a neurologist at the Methodist Hosp. in the Houston Medical center. After test confirmed the dx, I went [...]

Edited: 06/12/2016 @ 4:37pm

livalot

livalot responded Mon, Jun 13 at 1:01pm CDT · View

I'm so sorry! It is a debilitating disease. I had my thymus gland out in February and am getting infusions every 6 months. Had my first 2 in April. Plus was on 60 mg of prednisone. Down to 40 mg and back up again. I'm not sure the surgery or the infusions are working. It's hard to tell. Hoping you find something that gets you better. We need a cure!

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susanashephard

Aug 26, 2011 by @susanashephard · View  

Living With Myelofibrosis (Part 3 of a 4 part-series)

Patricia Wagnerby Patricia Wagner

Thanks for sticking with me! In this entry, I’ll be talking about what is involved in being your own advocate. I believe that for myself, I would not be alive to write to you now had I not realized that I am in charge – not the professionals whose help I seek.

Initially, I looked for information at my local library. Everything I found on the subject was brief and grim. Eventually, I found a small online support group. We were all in the same boat: we didn’t have knowledge of our disease, how to treat it, or who could help us. In comparing our situations we began to pull together some of the answers. As the support group grew, we even developed an internal list of the doctors we trusted. [...]

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nicholas

nicholas responded Mon, Feb 15 at 9:03pm CDT · View

Yes. Scarring was present on the biopsy. Platelets are 347? I think I am okay there. Very spooky disease.

mswilson

Sue responded Fri, Jun 10 at 6:21pm CDT · View

I've read your first 3 entries, trying to find number 4. How can I get to it?

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SharingMayoClinic

Sat, Jun 4 at 11:42am CDT by @SharingMayoClinic · View  

Moving Beyond a Painful Decade – New Technology Offers Respite From Debilitating Leg Pain

Gary Sorcic found relief for extreme leg pain.In the fall of 2014, Gary Sorcic was desperate. Severe, unrelenting pain in his legs had tormented him for 10 years. He was ready to take extreme measures.

"I told my doctor that if he had to cut my spinal cord and put me in a wheelchair to get rid of the pain, that's what I would do," Gary says.

Fortunately, that was not necessary. Instead, Gary found and enrolled in a clinical research trial at Mayo Clinic studying the effectiveness of a new technology to relieve nerve pain such as his. It made a tremendous difference. "I never imagined my legs feeling this good again," he says. "The study was a godsend for me." [...]

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Mon, May 16 at 1:33pm CDT by @SharingMayoClinic · View  

Florida Chef Finds Expertise to Manage Rare Disease, Get His Life Back

Chef Stefan is back on his feet with help from Mayo Clinic.When 67-year-old Stefan Gyorkos of St. Augustine, Florida, noticed swelling in his feet several years ago, he didn't think much of it. After all, as chef at a local golf and country club, he is on his feet for hours at a time.

That seemingly innocent ailment, however, would eventually lead to a series of tests and ultimately a diagnosis of a rare disease known as amyloidosis for which he required a bone marrow transplant at Mayo Clinic's Florida campus.

Amyloidosis occurs when a substance called amyloid builds up in the organs. Amyloid is an abnormal protein that is usually produced in the bone marrow and can be deposited in any tissue or organ in the body. Severe amyloidosis can lead to life-threatening organ failure. While there's no cure for the disease, the symptoms often can be managed, reducing the production of amyloid protein.  [...]

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Sun, May 29 at 10:51am CDT by @SharingMayoClinic · View  

Limb Lengthening and Regeneration Clinic Offers Hope for Amarachi

Amarachi talks about her experience with Blount's disease. Just six months ago, every step for Amarachi Austin-Okoh was filled with pain. The 11-year-old from Nigeria had enough trouble walking. Things like running, playing tag or playing basketball seemed like a dream. But now they're things she can look forward to, thanks to a life-changing trip to Mayo Clinic.

Amarachi has a condition called Blount's disease. Her mother, Modesther Austin-Okoh, says the family discovered the condition with Amarachi was just two years old.

Todd Milbrandt, M.D., an orthopedic surgeon at Mayo Clinic Children's Center, describes Blount's disease as "a failure of the growth plate to grow on the inside of the knee, specifically, the top part of the tibia." In Amarachi's case, her disease progressed to the point where she had severely bowed legs.

"We wish we could have seen her walk and be like other children," her mother says. "We were always crying for her."  [...]

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rcsofttech

rcsofttech responded Wed, Jun 1 at 6:16am CDT · View

wish you a better health... rc-softtech.com

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Tue, May 31 at 8:23pm CDT by @SharingMayoClinic · View  

Mayo Physician Is One of the First Proton Beam Patients in Arizona

Dr. Leslie Milde was one of the first proton beam therapy patients in Arizona. People often don't hear the phrase, "You are the most important person in my life today," especially from those other than family. However, Leslie Milde, M.D., has heard it often — from her patients. She is well aware of the significance of her role in the operating room, and the apprehension felt by patients about to undergo surgery.

Now the tables are turned, and as one of the first five patients undergoing proton beam therapy at the newly opened Mayo Clinic Building in Phoenix, Dr. Milde, former chair of Mayo's Department of Anesthesiology in Arizona, is relying on key people in her own life — the team of specialists treating her spinal meningioma, a condition where tumors arise from the membranes that surround the brain and spinal cord. [...]

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Mon, May 23 at 8:07am CDT by @SharingMayoClinic · View  

Celebrating 40 Twice as Nice After Recovery From Surprising Stroke

Sherry Pinkstaff, Ph.D., enjoys time with family after a stroke.It was the Sunday after Thanksgiving, and despite having house guests, Sherry Pinkstaff, Ph.D., awoke at 6 a.m., just as she did every day, and began planning her morning run.

Sherry, then 39, ran daily. Exercise was important to her. After all, she’d made it her career. She was a professor of physical therapy at the University of North Florida in Jacksonville and a research collaborator at Mayo Clinic's Florida campus. She spends her days teaching students and patients about the power of exercise and its impact on cardiovascular health.

Climbing out of bed on this morning, though, she recalls feeling “off.” Although she initially shrugged off that feeling, she would quickly realize this was the first of several signs something more serious was in play.  [...]

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rcsofttech

rcsofttech responded Mon, May 23 at 11:57pm CDT · View

thanks for sharing and making me aware. rc software technologies

Edited: 05/23/2016 @ 11:59pm

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Sat, May 21 at 11:25am CDT by @SharingMayoClinic · View  

Discerning Physician Turns to Mayo Clinic for Cancer Care

Dr. James Biles turned to Mayo Clinic after his cancer diagnosis.  Jim Biles, M.D., understands cancer treatment. A urologist who specializes in cancer surgery, he has spent his career focused on helping people receive the cancer care they need. So at age 72, when Dr. Biles received his own diagnosis of an aggressive type of cancer, he knew how critical it would be to get treatment from someone with experience and expertise.

"When I found out I had a bone tumor, I started hunting around to see who could do the surgery. It turned out that there are very few people in the world I would trust with it," he says. "Not many do it, and even fewer have the experience that Dr. Sim does. He is the kingpin."

Dr. Sim is Franklin Sim, M.D., an orthopedic surgeon at Mayo Clinic's Rochester, Minnesota, campus. After a consultation with Dr. Sim, Jim decided to go through with a complex surgery at Mayo to treat his cancer.

"Being a doctor, I was pretty picky about all the details being well managed," he says. "It was exceptional. I really couldn't have had a better experience."  [...]

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