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The Power of a Patient’s Perspective

December 6, 2017

by Cheryl Jernigan, CPA, FACHE; Kim Kimminau, PhD; Hope Krebill, RN, BSN, MSW; and Danielle Peereboom, MPH

PIVOT groupWhen our group first met last year, the vision was simple: bring researchers and patients together to improve cancer research. We envisioned meaningful partnerships among patients, clinicians and researchers where everyone contributes their unique perspectives to generate meaningful cancer research. 

The group, called PIVOT (Patient and Investigator Voices Organizing Together), is a relatively new effort at The University of Kansas Cancer Center. Its purpose is to ensure cancer center scientists receive advice and input directly from patients, ultimately leading to research that better meets patients’ needs. 

PIVOT is led by a group of dedicated patient partners, also called research advocates, who have a lived experience of cancer. They are cancer patients and survivors, and family or friend caregivers who help navigate and advocate for their loved one. These research advocates provide a collective perspective about what’s important to cancer patients by drawing from both their own personal cancer experience and their connections to other cancer survivors. 

Just like PIVOT, which is a collaborative effort, this blog post is a compilation of multiple voices telling PIVOT’s story. 

How can a research advocate help? 

Engaging patients and their families enriches the entire spectrum of cancer research, from research that takes place in the lab to research in our communities. For example, in clinical trials, research advocates can give advice on topics such as informed consent and how research protocols might affect study participants. Advocates may bring up concerns that researchers might never have thought about. They can alert researchers to study procedures that might be too burdensome for patients, such as filling out lengthy or complicated questionnaires and requiring too many in-person visits, biopsies or blood samples. 

Patient makes the most out of her cancer diagnosis 

Cancer survivor Michele Longabaugh participates in the PIVOT leadership team’s meetings from Wichita via videoconferencing technology. When a researcher needed a patient perspective to refine their project’s goals, Longabaugh was matched as a research advocate to the study. Because the research aims to improve rates of vaccination against Human Papillomavirus (HPV), a virus that causes some types of cancer such as hers, she was personally invested and eager to help. 

“It’s rewarding to know that you’ve helped other people. It gives your cancer some meaning. I should be dead right now, but I’m not. I used to ask myself why I’m here. Now I know: to give a voice to the silenced and those who will be silenced in the years to come. I might never see the result of this in my lifetime, but it’s going to help somebody else in the future. My voice can live forever because I’m a part of PIVOT,” Longabaugh says. 

Advocate carries the torch for his father 

Broderick Crawford is inspired by his experience caring and advocating for his father, a prostate cancer patient. Crawford has partnered with researchers at The University of Kansas for many years. His focus has always been to give a voice to minorities, who are under-represented in medical research as both participants and as research team members. Crawford believes that increasing the role of research advocates is crucial in bridging the divide that has long existed between the research community and minority communities. 

Since his involvement on PIVOT’s development team, Crawford has formed two new research partnerships at KU Cancer Center. 

The first is a basic science study looking at biological differences in African-American smokers versus White smokers to better understand disparities in smoking, quit rates and cancer risk. 

The second partnership involves serving as a community voice on a prostate cancer clinical trial that aims to improve targeted treatment for African-American men, who are disproportionately affected by the disease. Crawford intends to increase two-way communication and trust between African-American patients and researchers, which will in turn improve the research and the outcomes for these patients. 

Lending a unique point of view to cancer research 

It’s clear this work is meaningful to those who have experienced cancer firsthand. However, many patients and caregivers who are new to research advocacy underestimate the value of their real-life expertise living with cancer and how that experience can impact research. They often ask, “What could I add to cancer research? I’m not a scientist and I don’t have training.” 

Dr. Danny Welch, a laboratory-based researcher who studies metastatic breast cancer at the cellular level, has worked with advocates for several years. Advocates have made vast contributions in his lab by mentoring junior investigators, writing educational guides for clinical trials, reviewing grant proposals to make sure they address patient concerns, and teaching investigators how to communicate clearly with the public. 

“As a basic researcher, my colleagues and I work to understand the biology of cancer. We get to know cells very intimately. But it is people’s lives we must seek to substantially impact. Getting to know the people our work should benefit inspires and enriches our research and our lives. A meaningful advocate-scientist relationship is mutually beneficial and rewarding. Working with many advocates throughout my career makes me realize how we each bring something uniquely vital to the table. We are in this battle together; fighting a common, multifaceted enemy that can best be conquered by working together… and for each other,” Welch says.

Engaging patients and their families is something that researchers across the country are doing more and more thanks in part to research funders encouraging and requiring it. When we created PIVOT, we wanted our efforts to be far-reaching, so we intentionally recruited a diversity of patient voices. It’s this broad reach that makes PIVOT so unique: 

  • • PIVOT is the only cancer center initiative in the country designed to include a balance of diversity of cancer types and cancer stages. For instance, members include those who are considered at high risk because of family history and genetics through members dealing with cancer that has spread (metastatic cancer).

  • • PIVOT also includes patient partners who live in urban, suburban and rural communities, of different ages, genders, races, ethnicities, socioeconomic statusand educational backgrounds. Everyone interested in contributing to cancer research is welcome to participate at whatever level is comfortable for them. 

  • • Cancer research happens in laboratories, clinics and communities. We seek partnerships across the spectrum of cancer research from the bench to bedside and beyond. 

The next step in PIVOT’s growth focuses on developing educational resources and programming to support meaningful partnerships between research advocates and researchers. KU Cancer Center is committed to learning from and with patient partners. 

Patients, survivors and those who support cancer patients have a tremendous amount of wisdom to share. Their journey and insights shine a light on how we can improve our research. We’re proud to be leading the nation in developing an engagement model, like PIVOT, that may influence how other cancer centers partner with patients, families and surrounding communities. 

Do you want to get involved in PIVOT? Check out our website at or email us at

More power, fewer visits: A new approach to radiation for prostate cancer

November 15, 2017

by Xinglei Shen, MD, radiation oncologist

Xinglei ShenTypically, image-guided radiation therapy (IGRT) and intensity-modulated radiation therapy (IMRT) for prostate cancer takes eight to nine weeks to complete the standard 40 to 45 treatments. Each treatment in this protocol is a relatively small dose of radiation.

An alternative is to give fewer treatments at higher doses. This is the idea behind a shorter-course radiation therapy called hypo-fractionated radiation. In hypo-fractionated treatment, slightly higher doses of radiation are given during each treatment, but fewer treatments are necessary. In this approach patients receive 20 to 28 treatments over a period of four to six weeks.

How The University of Kansas Cancer Center is using shorter-course radiation therapy for prostate cancer

Building upon this idea, a new type of radiation therapy protocol at KUCC is making prostate cancer treatment shorterand more manageable, with less exposure to radiation. Furthermore, it has comparable side effects and outcomes to longer treatment schedules.

SBRT, or stereotactic body radiation therapy, takes the approach of less total radiation to a new level. With SBRT, prostate cancer patients receive a much larger dose of radiation for each visit, but a lower overall dose than even our current shorter courses of radiation deliver.

That means patients can complete SBRT treatment in just five visits. We usually administer SBRT treatments every other day so our patients are done in a little less than two weeks — not the five and a half weeks of our current IGRT and IMRT courses (or up to nine weeks under the old method).

SBRT allows for radiation treatments that are much more convenient for men’s work and home lives. It’s less disruptive to deal with appointments for a couple of weeks than it is for more than a month. Men can get in, get their treatments and get back to their regular routines much faster. Not every man is a candidate for this type of procedure, but we screen patients to see if they may be good candidates.

SBRT has been used to treat prostate cancer for 10 to 15 years. Researchers are still collecting data about the treatment’s long-term results compared to other forms of radiation therapy, but outcomes so far have been promising. Patients who have had SBRT have similar results for cancer control, and side effects five and 10 years after treatment compared to those who have had standard radiation therapy. 

Prostate cancer patients always have choices. Our top priority as a radiation oncologist is to help our patients find the choice that best fits their lives and goals. As treatments and technology for radiation therapy continue to develop, we are hopeful that we’ll be able to help more men overcome prostate cancer faster and get back to their normal lives.

Taking breast cancer awareness to heart

October 27, 2017

October is a special month. It’s a time when we celebrate breast cancer survivors, support all the women fighting breast cancer and remember those who have lost their battle. 

October is also a month to raise awareness about breast cancer prevention and detection. It’s safe to say that all of us will know someone affected by breast cancer in our lifetime. That’s why it’s important to know the facts and spread the word about breast health. 

Breast cancer statistics 

  • • Breast cancer is the most common cancer in American women (apart from skin cancer). 
  • • It is estimated that 300,000 new cases of breast cancer in the United States will be diagnosed in 2017. 
  • • One in 8 women will be diagnosed with breast cancer in her lifetime. 
  • • One in 6 of these breast cancers will occur in women in their 40s. 

Reducing your risk of breast cancer 

There is evidence that breastfeeding, maintaining a healthy body weight, moderate exercise, limited alcohol consumption and minimizing hormone replacement therapy can reduce your risk of breast cancer. However, most women diagnosed with breast cancer do not have substantial risk factors or a strong family history of breast cancer. The best defense is to find breast cancer early, when it is small and more easily cured. 

  • Screening works

    Annual mammogram screenings save thousands of lives every year. In fact, they can reduce the risk of dying from breast cancer by about 40 percent. I recommend all women begin screening mammograms at age 40, and continue to get screened every year. Women at high risk for breast cancer may begin earlier. Some women choose to begin screening mammograms every other year starting at age 50. However, this results in about 6,500 more lives lost to breast cancer every year in the United States. Ultimately, it is up to you to arm yourself with the facts and decide what screening regimen is right for you. 

  • 3D mammograms are the best choice

    I always recommend 3D mammograms to my patients. This new technology has improved the traditional 2D mammogram because it enables radiologists, like me, to find more cancers. It also makes it less likely that you will have to return for additional images.

    At The University of Kansas Cancer Center, we have advanced technology that allows us to obtain a 3D mammogram without any additional radiation to the patient. Many insurance companies, including Medicare, offer full coverage for 3D mammograms. Check with your insurance company to find out if you are covered. 

  • Consider additional screening if you have dense breast tissue 

    Dense breast tissue is very common, affecting about 40-50 percent of screening-age women. Women with dense breast tissue have an increased risk of breast cancer. Breast cancer is also more difficult to detect on a mammogram in a woman with high breast density. For this reason, additional screenings are often recommended.

    The University of Kansas Cancer Center is one of the only facilities in the region that offers dense breast screening.

Onalissa Winblad, MD

Take control of your breast health 

When it comes to breast health, knowledge is power. By getting your annual mammogram every year, you may very well save your own life. 

We offer comprehensive breast imaging. Schedule a screening mammogram online or call 913-588-6804 and select option 3.  

Breast Cancer and Pregnancy

October 6, 2017

"In most cases, we can treat breast cancer while maintaining a pregnancy," says Dr. Lauren Nye, breast medical oncologist.

by Lauren Nye, MD, Medical oncologist

Pregnancy is an exciting time, filled with joy and anxiety for many. For most women, the thought of being diagnosed with breast cancer during pregnancy never crosses their mind. 

With women delaying childbearing until their 30s and 40s, the incidence of breast cancer during pregnancy is increasing. We estimate one pregnancy in 3,000 is affected by breast cancer. Women must be aware of this and pay attention to breast changes that occur during their pregnancy. 

Signs and symptoms

It is normal for the breast to change and enlarge even during early pregnancy. Symptoms to be concerned about include a lump or mass in the breast or under the armpit, a persistent rash on the breast, nipple discharge coming from only one side, or an inward nipple. Again, some of these changes may be associated with hormone fluctuations during pregnancy. Still, bring them to the attention of your physician. 

Diagnosing breast cancer during pregnancy

We can safely perform breast imaging during pregnancy. Typically, we use a breast ultrasound to evaluate an area of concern. If warranted, we perform a breast biopsy. We can also perform a mammogram with proper abdominal shielding during pregnancy. 

Multidisciplinary treatment

In most cases, we can treat breast cancer while maintaining a pregnancy. Treatment options include surgery and chemotherapy, both of which can be considered in the second and third trimester of pregnancy. Several standard breast cancer chemotherapy drugs do not harm a fetus when administered during the second or third trimester. Therapies that we can’t give during pregnancy, such as radiation, HER2-directed therapies and endocrine therapy, we administer after delivery of the baby.

Pregnancy is stressful, as mothers-to-be worry over how to protect their unborn babies. Facing breast cancer and making challenging decisions on the best treatment options for both mother and baby raises stress to an unimaginable level. Women who face breast cancer during pregnancy should seek multidisciplinary care at a National Cancer Institute-designated cancer center, such as The University of Kansas Cancer Center. Their highly specialized care requires – at minimum – the orchestration of a medical oncologist, breast surgeon, breast radiologist, perinatologist and their obstetrician. 

If you are diagnosed with breast cancer during pregnancy, do not rush to terminate your pregnancy. Seek a second opinion at an NCI-designated cancer center to learn about the options available to you and your unborn child.

Fighting lymphedema through surveillance and early intervention

October 2, 2017

Many breast cancer patients have a lifelong risk of developing lymphedema, which is a buildup of fluid in soft body tissues. Lymphedema can cause painful swelling of an arm, up to four times its normal size.

Lymphedema occurs when lymph nodes are surgically removed, much like intersections being closed during construction. When this happens, fluid can’t move through the body and out because lymph system pathways are gone. If alternate routes can’t be found, then fluid backs up and the arm begins to swell. Patients who have had breast surgery, lymph node removal or radiation are at highest risk for lymphedema.

Surveillance of lymphedema

Early detection allows for early treatment, which can provide the most benefit to breast cancer patients.

After breast cancer treatment, we schedule lymphedema assessments at key intervals just before or after oncology follow-up appointments. This makes it as easy as possible for all patients to come in for assessments.

During this time, we provide patients with education about lymphedema signs, symptoms and prevention tactics. This may include diet, exercise, self-massage, self-care, support groups, garments and referrals to resources.

As part of our comprehensive breast cancer program, The University of Kansas Cancer Center has established lymphedema prevention clinics. Our clinics are located at the Richard and Annette Bloch Cancer Care Pavilion in Westwood and The University of Kansas Hospital in Overland Park. At the clinics, we use painless devices to monitor breast cancer patients for the first signs of lymphedema.

Diagnosis and treatment

To ensure we catch lymphedema before it starts, we use a perometer to measure arm circumference before and periodically after breast cancer surgery. This allows us to provide a baseline so we can detect subtle circumference changes early. The rectangular device passes over each of the patient’s arms in a single round-trip, using infrared light beams to measure arm volume.

We also use a state-of-the-art, FDA-approved technology, known as L-Dex, which is specifically designed to diagnose lymphedema. L-Dex technology detects extracellular fluid accumulation of the upper extremity that results when the lymphatic system is compromised. The noninvasive exam is easily performed in our clinic. Estimating body composition using low-frequency electrical current, also called Bioimpedance surveillance, we can detect lymphedema three to four months earlier than traditional methods of assessment.

Once detected, treatment can include at-home programs of stretching, use of a compression sleeve and patient self-massage on the affected side. With the help of these techniques, many patients return to normal exams and never develop lymphedema.

Surgical treatment

For patients who need it, we offer lymphatic surgery to alleviate pain and symptoms. Our plastic surgeons use sophisticated surgical procedures, such as vascularized lymph node transfer and lymphovenous bypass, to effectively treat lymphedema. 

These advances offer patients new hope to manage their condition.

The connection between women's cancers and men's health*

*(or why men should care about women's cancers)

September 22, 2017

While it seems obvious that women are concerned about gynecological cancers, those that involve women’s reproductive organs, men also have good reason for concern, though, they may not know it. 

Men whose families have a history of women’s cancers may be at higher risk for cancer themselves. And even if they don’t develop cancer, men still need to be vigilant about their family history for the sake of their children. 

How women’s cancers can increase men’s risk

Many cancers carry a genetic risk that can be inherited from family members. We offer genetic testing to patients with cancer and their family members who may be carrying gene mutations that could put them at risk. Learn more about our genetic testing services

Two of the types of gene mutations that may occur in patients with women’s cancers include changes to the BRCA1 or BRCA2 genes and changes associated with Lynch syndrome. 

BRCA genes 

BRCA1 and BRCA2 stand for “breast cancer susceptibility gene 1” and “breast cancer susceptibility gene 2.” The BRCA genes produce proteins that suppress the growth of tumors. A mutation in either of these genes may mean a greater chance for the development of cancer. 

Women who have been diagnosed with breast, ovarian or uterine cancer may carry one or more of these mutations, which means their family members could be at risk. 

Men need to be aware of their family history, particularly if a close female relative has been diagnosed with one of these types of cancer, including: 

  • ● Daughter 
  • ● Mother 
  • ● Sister 
  • ● Granddaughter 
  • ● Grandmother 
  • ● Niece 

A man with one of these mutations is at increased risk for developing cancer himself. Although breast cancer is much less common in men than in women, men with a BRCA gene mutation are at higher risk for male breast cancer than men without these mutations. BRCA gene mutations also can increase a man’s risk for prostate cancer and pancreatic cancer.

Lynch syndrome

People with Lynch syndrome, also known as hereditary nonpolyposis colorectal cancer, have mutations in genes that repair damage or errors in their DNA. Lynch syndrome can increase a woman’s chances of developing ovarian cancer and uterine cancer, among many others. 

Dineo Khabele, MD Director, Division of Gynecologic Oncology at The University of Kansas Cancer Center, tells men that women's cancers can affect their likelihood of being diagnosed with cancer during their own lifetimes. Genetic testing is important to women and men with a close family relationship to someone diagnosed with BRCA genes.

If you have a relative who has been diagnosed with Lynch syndrome, you may be at increased risk for a number of cancers, including:

  • ● Bladder and kidney cancers 
  • ● Colorectal cancer 
  • ● Gastrointestinal cancers 
  • ● Liver cancer 
  • ● Pancreatic cancer 
  • ● Prostate cancer 

Protecting your family from genetic risks for cancer 

Having a particular gene doesn’t mean a man is definitely going to develop cancer. But it increases the risk for men and their families. Men who have inherited gene mutations can pass those mutations down to their children. 

For instance, if a man’s mother was diagnosed with breast cancer, and she had a BRCA2 mutation, the son could be carrying that mutation as well, increasing his risk for male breast cancer or other cancer types. 

And the son can pass this mutation on to his daughter, who could develop breast cancer or ovarian cancer one day. Or he could pass it on to his son, who then may be at higher risk for prostate cancer. And they can continue to pass that mutation on to their children. 

I urge all of my patients to be proactive about their families’ cancer risk. Ask if there are cancers that run in your family. Find out through genetic testing if you could be at risk for carrying these mutations. And if you find that you are at higher risk because of a mutation, ask your doctor how to reduce the risk of developing cancer.

Care after childhood cancer

September 6, 2017

by Becky Lowry, MD, FACP, Medical Director and Kyla Alsman, RN, BSN, Nurse Navigator, Survivorship Transition Clinic

80 percent of children with cancer survive into adulthood. 80 percent of pediatric cancer survivors develop a serious, chronic health condition by age 45.

Today, because of advancements in treatment, 80 percent of children diagnosed with cancer will survive into adulthood. Sixty years ago, less than half of children were alive five years after their diagnosis. This achievement is remarkable, but increased survival rates have revealed the long-term effects of cancer treatments. 

Late effects

While the treatment cured these children of cancer, it also put them at increased risk of developing “late effects.” Late effects are health conditions that occur as a result of treatment, and sometimes do not surface until decades after treatment is complete. In fact, in a study of more than 1,700 adult survivors of childhood cancer published in the June 12, 2013, Journal of the American Medical Association, it was estimated that about 80 percent would develop a serious, disabling or life-threatening chronic health condition by the age of 45. 

Late effects may include: 

  • • Growth and development delays
  • • Secondary cancers
  • • Fertility problems
  • • Early heart disease
  • • Endocrine system (hormone system) dysfunction, including thyroid function, bone strength, blood sugar management, energy production
  • • Weakened immune system
  • • Neurologic and cognitive concerns, including problems with concentration and memory
  • • Psychosocial concerns such as mood and sleep disturbances 

The Survivorship Transition Clinic at KU Cancer Center helps patients make the transition from pediatric care to adult care and health management.

Transitioning to a lifetime of care

That is why The University of Kansas Cancer Center, in collaboration with Children’s Mercy Survive and Thrive program and the Masonic Cancer Alliance, established the Survivorship Transition Clinic.

The transition from a pediatric oncologist to an adult provider can be overwhelming, especially if the patient is ready to put the experience of cancer behind them and move on to a healthy, normal life. Furthermore, as a child, the patient may not have realized the full extent of their cancer treatment, and therefore may not be aware of their care plan moving forward. Early and frequent care can diminish potential late effects down the road. 

Each patient has a unique health history, and that calls for a tailored treatment and care plan. At the Survivorship Transition Clinic, we work with patients to help them understand the risks of late effects. Not only do we ensure that each patient undergoes the appropriate testing and screening to monitor for the development of these late effects, but we also connect patients with specialists if any health issues are found. We also educate patients on how to minimize these risks. 

There are several pediatric cancer survivorship clinics across the US, however only a handful of these clinics are housed in an adult institution like The University of Kansas Cancer Center. In our clinic, we provide care in two different ways: 

  1. Individuals who already have an established primary care provider
    We encourage these individuals to maintain that relationship and see us in the survivorship clinic once a year for survivorship care only. We ensure that their primary care providers get a copy of our notes, a treatment summary and understand our care plan.
  2. Individuals who need a primary care provider 
    We can serve as both the primary care provider and the survivorship provider. 

No matter where pediatric patients received treatment, we help make the transition

It doesn’t matter where our patients received cancer care as a child – we are here to ensure that every childhood cancer survivor is living a healthy life. If you are interested in making an appointment, contact us at 913-945-6655.

Dealing with fear of cancer recurrence

August 22, 2017

“I’m so afraid of the cancer coming back that I cry myself to sleep at night,” said Emily tearfully.

“I think about my cancer returning, too, but I decided that I didn’t want to live out the rest of my days in fear. I want to make the most my life,” responded Norah. 

This exchange took place during a support group meeting for cancer survivors, and I have remembered it for a long time. What was memorable was not the concern that Emily expressed, but how Norah had used her fear to shape her life going forward. 

As a psychologist, I help patients overcome their fears. But for cancer survivors, fear of recurrence is realistic, as most survivors have some level of risk of recurrence. In fact, cancer survivors are cautioned to be aware of symptoms that might signal a recurrence, so the recurrence can be identified and treated in a timely manner. And cancer survivors may have “triggers” that remind them of their experience with cancer and the fear of its return. Routine follow-up exams and scans, anniversary dates of diagnosis or surgery, or hearing of the diagnosis of someone they know or the cancer-related death of a friend, relative or celebrity may serve as reminders. 

Almost all cancer patients have a low to moderate level of fear of their cancer returning. In fact, a low level of fear of recurrence can actually be beneficial, because it can motivate survivors to follow recommendations regarding follow-up care, such as getting preventive cancer screenings and taking medications. In addition, this motivation may encourage survivors to improve their overall health by sticking to a healthy diet, exercising, and quitting smoking. 

But some survivors, such as Emily, have such high levels of fear of cancer recurrence that it robs their daily life of joy. A high level of fear of recurrence comes with a cost, as it can decrease cancer survivors’ social, emotional and physical functioning. In fact, studies have shown that compared to survivors with a low level of fear of recurrence, survivors with high levels of fear of recurrence generally have a lower overall quality of life. 

So how should cancer survivors balance the benefits of a low level of fear of recurrence, with the negative consequences of a high level of fear of recurrence? The recommendations listed below can help you manage your fear of recurrence, so you can make it work for you rather than against you: 

  1. Get an accurate understanding of your risk of recurrence from your oncology team. 

  2. Have a plan: Learn the signs of recurrence, and what to do if you have symptoms. 

  3. Ask your oncology team what you can do to decrease your risk of recurrence, including recommendations for diet and exercise. 

  4. Focus on wellness: Put your energy into improving your overall health. 

  5. Start low and go slow: Take small steps, and set realistic goals. Be patient with yourself when making changes. 

  6. Do something that brings you joy daily. Sing in the shower! Watch a silly TV show! 

  7. Be social. Strengthen and create meaningful relationships with others. 

  8. Learn to live with uncertainty.

  9. Think about what gives your life meaning and what your values are, and live your life accordingly. 

  10. Know when to reach out for help: If you are thinking of harming yourself or someone else, or if your anxiety is impairing your quality of life and you are unable to make changes on your own, ask your healthcare team for a referral to a therapist. 

If you are a cancer survivor, try to adopt Norah’s philosophy of putting her cancer experience into perspective. Strive to make your cancer experience serve as the motivation to make your future life as meaningful and rich as possible.

Working towards a Cancer-Free Kansas

August 9, 2017

Last September, we completed an exhaustive multi-year effort to submit our application to the National Cancer Institute for consideration of: 

  • • Renewal of our National Cancer Institute designation
  • • The addition of Children’s Mercy as a consortium partner
  • • Designation as a Comprehensive Cancer Center

I am pleased to announce that The University of Kansas Cancer Center’s National Cancer Institute (NCI) designation was renewed. Just as significant, Children’s Mercy joined Stowers Institute for Medical Research as a formal consortium partner. 

Stronger together

The addition of Children’s Mercy to our existing partners further strengthens our collective efforts, particularly in addressing pediatric cancer. Children have been identified by NCI as an underserved group in cancer research. With the physicians and researchers at Children’s Mercy focused entirely on pediatrics, we now cover the entire spectrum of cancer patients.

Left to Right: Rand O'Donnell, Children's Mercy Hospital; Roy Jensen, The University of Kansas Cancer Center and David Chao, Stowers Institute

United, we are 350 cancer researchers and clinicians strong. No one in our region comes even close to that. Researchers benefit from the expertise of others, patients benefit from a deeper bench of specialists. 

We did not achieve Comprehensive Cancer Center status – the highest ranking awarded by NCI – this round, but we are not discouraged. Comprehensive Cancer Centers demonstrate an added depth and breadth of research, as well as substantial transdisciplinary research that bridges these scientific areas. 

The NCI believes we are on the right trajectory to becoming a Comprehensive Cancer center. In fact, they will be increasing our annual funding by 11 percent. In recent years, due to funding constraints, other NCI cancer centers have experienced a decrease in NCI grant dollars. This is a testament to the NCI’s utmost confidence in our center, and we are incredibly grateful for the additional funding. 

We’ve made great progress, but we are not settling

In reviewing our most recent application, I am so very proud of how far we have come. We have devoted ourselves to building a world-class cancer center and are well on our way to accomplishing that goal.

Now, patients have expanded access to the latest, cutting-edge cancer treatments. Since 2010, we have enrolled more than 20,000 participants in clinical trials. So far this year, we have opened 54 new clinical trials. On any given day, there are more than 130 active clinical trials available to our patients.

Over the last decade we have received more than $423 million in federal funding to support research endeavors. 

Efforts around patient advocacy have also ramped up. Last year we launched PIVOT, which connects patients with investigators so we can better tailor our research efforts to meet patient needs.

Finally, because so much of our catchment area is spread across a large geographic area, we continue to expand our reach into the most rural parts of Kansas with our outreach partner, the Masonic Cancer Alliance. The Masonic Cancer Alliance has screened more than 20,000 people for cancer since 2008. 

All of this activity and progress means one thing to a patient being treated at an NCI-designated cancer center: a 25% greater chance of survival. Because of KU Cancer Center, patients have access to the very best in cancer care close to home. 

But we are not resting on our laurels. The NCI’s feedback on our application serves as our roadmap moving forward. We will continue to build on the core features that define a Comprehensive Cancer Center, which include: 

  • • Driving scientific discovery 
  • • Translating discovery to benefit patients 
  • • Changing the practice of medicine 
  • • Impacting public policy 
  • • Training the next generation of clinicians and researchers 

Thank you to our team and supporters

None of this would be possible without the collective strength of our talented and multi-disciplinary team. In a short amount of time we have made incredible strides towards becoming a national leader in cancer care and research. 

A cancer center does not experience this kind of growth without the support of its community, donors and policymakers. There is a great deal more to do, and I want to thank each and every one of you for your continued support and commitment.

We have a bold vision: a cancer-free Kansas and beyond. In the fight against cancer, our reach must exceed our grasp. Working together, I have no doubt that we will ultimately achieve Comprehensive Cancer Center status and, more importantly, that we will one day defeat cancer.

Expandable prosthetics help children grow

July 6, 2017

As an orthopedic oncologist, I deal with highly complex health issues every day. My charge is to not only cure a patient of his or her cancer but to also try to make bones and soft tissues workable and functioning again. 

Many of my patients are children with cancer in their bones, which places their limbs at risk for amputation. Not so long ago, these children either had high-level amputations or procedures that replaced the bone with a prosthesis or artificial bone within their limb. Doing this meant that, because of their young age and potential for growth, they would require numerous operations throughout their childhood to lengthen the prosthesis. However, because technology has come so far, we are able to offer something better. 

Howard Rosenthal, MD, displays a customized prosthesis during surgery

That “something better” is a noninvasive, expandable prosthesis for children. The prosthesis is not yet FDA-approved, but is being used experimentally at select cancer centers. We are one of only a few facilities in the nation to use the device to reconstruct and rebuild the limbs of pediatric cancer patients. 

The prosthetic device is surgically implanted and allows for attachment of all ligaments and tendons. This allows the surgeon to expand or grow the prosthesis in a noninvasive fashion by placing the limb in an electromagnetic field, which activates a gear mechanism creating “growth.” Within 16 to 20 minutes, a child’s arm or leg can instantaneously grow up to 4 mm (about 1/16 of an inch) and catch up with the other limb. We can lengthen the limb as many times or for as long as necessary, based on the patient’s growth. Patients say there’s no added stress on their muscles or tendons and that they can rarely tell the difference between the prosthetic limb and the real one. 

Consider a child of age 5 to 9 who has bone cancer. We face two dilemmas: 

  1. Cure the cancer 
    With metastatic cancer, reconstruction of the limb is a primary goal, but the reconstruction efforts may interfere with the cancer treatment and healing process. Finding a way to restore the limb without getting in the way of therapy is a challenge. (A metal plate, for example, may be problematic for, and interfere with, MRI and CT scans.) Matching the biological aspects of reconstruction with the potential for future therapy is a task we must consider. Thus, carbon fiber implants allow us to better visualize the part of the body that is reconstructed, even with MRI and CT scans.

  2. Provide for growth
    Children who lose limbs often experience disruptions in their growth or damage to their growth plates. Any restoration has to allow for growth as a child ages.

With the compassionate-use permission of the FDA, we have completed 30-plus procedures that involve the expandable prostheses with amazing results. The function and appearance are very normal. The device is constructed of titanium and a high molecular weight polyethylene, and includes a very small but powerful motor. The prosthesis is temporary and will convert to a long-term prosthetic replacement when the child reaches adulthood. By that point, we expect the patient to be cancer-free with no worries about future treatment. 

These treatment advancements are so exciting. It’s an opportunity to help create a modern-day “Bionic Woman” or “Six Million Dollar Man.” I find it very gratifying to do cancer research, but I was always interested in bioengineering and biomechanics. I’m pleased to be able to help cure patients of cancer and help them lead normal, high-functioning lives again.

Nutrition education increases diet quality

June 21, 2017

Improved nutrition literacy leads to improved diet quality

Simplifying nutrition messages is critically important when navigating the complex care of cancer treatments. Researchers at the University of Kansas Medical Center tested a measurement of how well breast cancer survivors understand the key nutrition concepts before and after receiving nutrition education for weight loss. They discovered that participants improved their nutrition literacy, especially with portion sizing. As understanding increased, diet quality also increased. Current work is exploring methods to improve nutrition literacy in populations and how to implement these methods in clinical settings. 

What you can do now:Consulting with a dietitian, preferably with credentialing as a certified specialist in oncology (CSO), will help troubleshoot nutrition and feeding issues that arise during cancer treatment. Share your nutrition information with your care team, and ask for a consultation with a dietitian to develop a diet plan.

Technology improves communication building pathways between patients and the care team

Communication tools have never been so widely accessible, and health care teams and patients are harnessing this capability with novel and creative ways to manage cancer care remotely.

Supporting the goal of enhancing patients’ nutritional education, researchers at The University of Kansas Cancer Center have sought to use technologies for improved and eased communication with patients. Two studies funded by the cancer center used a technology-based communication tool between health professionals and patients.

  • The University of Kansas Cancer Center's Brantley Thrasher, MD, Urology, and I integrated the use of a phone application and wearable accelerometers in a weight loss intervention for overweight prostate cancer patients. Diet and activity tracking in the application allowed for personalized coaching and efficient dialogue. 

  • Additionallly, KU urologist, Eugene Lee, MD, and his colleagues are currently testing the impact using a tablet-based application to allow earlier detection and intervention for malnutrition and feeding issues to improve patient outcomes following cystectomy. 

What you can do now: Good communication is key regardless of technology and platform. For the best care possible, share nutrition concerns with your health care team, and ask for help.

Take home message

Maintaining or adopting a healthy lifestyle is highly recommended to help prevent and treat cancer, and our experts are always striving to identify innovative cancer-fighting nutrition strategies. If you or someone you love is diagnosed with cancer, reach out to us for help. Cancer care can be very complex, but feeding one-self or a loved one can be simplified by a nutrition professional. Providing good nutrition can help families come together to help fuel a patient before, during, and after cancer treatment.

Hungry for more? Read Dr. Hamilton-Reeves' related post: The Connection Between Nutrition and Cancer

Lighting the path for compassionate cancer care

June 9, 2017

“What is a nurse navigator?”

This is the question I hear when I tell people that I work as a nurse navigator for The University of Kansas Cancer Center. When we started the nurse navigation program in 2011, I asked the same question. To find an answer, I researched cancer centers across the country and read every article I could about nurse navigation. What I learned is if you've seen one nurse navigation program, you've seen one nurse navigation program. No two nurse navigation programs are exactly the same.

The most agreed upon definition of nurse navigation is that we address barriers to care for cancer patients.

Nurse navigation began in the early 1990s when Dr. Harold Freeman, a breast surgeon in Harlem, NY, noticed that patients with abnormal mammograms were not returning for biopsies or other necessary appointments. These patients were falling through the cracks. Dr. Freeman hired a social worker to contact and follow up with the patients. The social worker discovered the patients weren't making their appointments because they had no transportation or childcare. The social worker, or lay navigator, partnered with the patients to make sure they came to their required appointments. The end result of this hands-on approach was that these breast cancer patients experienced better outcomes. They received the life-saving treatment they needed, faster.

The University of Kansas Cancer Center's nurse navigation program pairs each physician has a nurse coordinator  who ensures that patient treatment is managed and timely. This nurse is a contact for the patient to guide them through treatment side effects and other issues that may arise.

Nurse navigators at our cancer centercross multiple care settings an focus on connecting the patients to their treatment teams. We work to provide the information necessary to enable treatment to begin in a timely way. We work with physicians and specialties to close the gap between these different teams. Our mission is to provide a path to efficient, personalized, and compassionate cancer care.

Our nurse navigation program has disease-site specific nurses who are experts in their fields. We connect these nurses with patients from the time of referral to our cancer center. They work with provider teams to ensure each patient is scheduled with the appropriate physician(s), and has all the necessary testing and medical information required so the physicians can make treatment recommendations.

Much like the first patient navigator in Harlem, we identify barriers to care. Once identified, we connect patients to appropriate support services teams to help resolve those barriers. However, the most important thing we do is provide education and emotional support through a very scary time in a patient's life. We are the brightly lit path for the patient and their family to personalized and compassionate cancer care.

Four things you may not know about clinical trials

May 2, 2017

Clinical trials are the basis for medical advancements. It takes time and patience to move through basic and translational research before a new treatment advances to testing in humans through a clinical trial. By the time the treatment reaches a patient, scientists have already spent years developing it. Nearly all of the tried and true cancer drugs available to you today exist because past patients participated in clinical trials. 

Despite the advantages to joining in a clinical trial, historically, few cancer patients actually participate. With the Cancer Moonshot initiative and the increasing ability to target specific cancer cells, today is an optimal time to consider joining a clinical trial. 

Below, I discuss some of the reasons you should consider participating in a clinical trial. 

  1. You will gain access to innovative treatments before they become widely available. As a participant in a clinical trial, you may receive the latest cutting-edge cancer treatment. 

  2. You will receive frequent, attentive medical care. Some patients are nervous that once in a clinical trial, their standard of care treatment will stop. Placebos are rarely used for active cancer treatment - the majority of studies compare the standard treatment with a new, investigational drug or treatment. As a clinical trial participant, in addition to the care you would receive as part of your standard treatment, you will also have visits to the clinic with the trial team. They will closely monitor your side effects as well as the effectiveness of the new therapy. In essence, you are receiving “Standard of Care Plus.” 

  3. You get to play an active role in important treatment decisions that can affect your care. If you qualify for a clinical trial, you are the advocate in your care and can choose to participate. Participating in a clinical trial may make you feel as if you have more control over your health, which can lead to a more positive outlook on life. 

  4. You are contributing to improving the health of others. Clinical trials are the only way researchers can continue to develop new cancer treatments. By participating in a clinical trial, you are helping to advance cancer research, and offer hope and opportunity for future patients.

If you’re interested in participating in a clinical trial, ask your doctor about your options. Want to learn more about KU Cancer Center’s clinical trials? Visit our web page or call our Clinical Trial Nurse Navigator at 913-945-7552.

Know the symptoms and risk factors of head and neck cancer 

April 16, 2017

Each year approximately 50,000 Americans are diagnosed with head and neck cancer and about 8,000 die from the disease. Celebrities such as Michael Douglas and Jim Kelly, who have been treated for head and neck cancer, bring awareness to the disease, but more is needed. 

We observe Oral, Head and Neck Cancer Awareness in April as an opportunity to raise awareness about head and neck cancers that can affect the mouth, throat and salivary glands. While less common than some other cancers, head and neck cancers still cause unnecessary suffering. 

Risk factors and the symptoms 
The traditional risk factors for head and neck cancers include smoking, tobacco chewing and alcohol consumption. However, the human papillomavirus (HPV) causes an increasing number of cancers of the throat, especially in younger males, often without traditional risk factors like smoking. Early detection is the key to addressing head and neck cancers. Patients with head and neck cancer can have pain in the mouth or throat and trouble swallowing. Sometimes a lump in the neck is the only sign of a cancer that does not cause any other symptoms. If you have any of these symptoms for more than two weeks, talk to your doctor. These symptoms are not conclusive indicators of cancer and may be symptoms of another condition that needs attention. 

Reduce your risk 
To reduce your risk of developing head and neck cancers, stop smoking/chewing tobacco, drink less alcohol and get the HPV vaccination. Kansas and Missouri are among states with the lowest rates of HPV vaccination in the nation. This means we are missing a huge opportunity to prevent many deadly cancers. We must do better. Read more about HPV and the updated vaccination guidelines. 

Treatment at an NCI-designated cancer center 
Treatment for head and neck cancers includes surgery, radiation, chemotherapy and clinical trials. Sometimes a combination of these treatments is needed for more advanced-stage cancers. 

Studies show that patients treated at National Cancer Institute-designated cancer centers by an experienced, multidisciplinary team have better survival and health outcomes. In the state of Kansas and the Kansas City metropolitan area, The University of Kansas Cancer Center is the only NCI-designated cancer center. We offer an academic, multidisciplinary head and neck cancer program. Here, our surgeons, radiation oncologists, medical oncologists, radiologists, pathologists, nurses, nutritionists, and speech and language pathologists all work closely together to treat this disease. 

Screening for head and neck cancers 
The University of Kansas Cancer Center is hosting a head and neck cancer screening that is free and open to the public on Friday, April 21, 1-3 p.m. Screenings will take place on the third floor of the Medical Office Building, and last about 10 minutes. Exams are performed by practitioners from the Department of Otolaryngology ̶ Head and Neck Surgery. This is a great opportunity to learn about head and neck cancer, including risk factors and symptoms. To schedule a free screening, call 913-588-6701. 

Related links: 

How Do We Promote Equity in Cancer Prevention, Treatment and Survivorship Care for Everyone?

April 13, 2017

Despite dramatic strides in cancer research, not everyone has benefitted equally. Cancer incidence rates for men have been decreasing over the past 15 years, however, African-American men still have a higher cancer incidence rate than white men and women and African-American women. African-American men have higher cancer death rates than white men and African-American women have higher cancer death rates than white women. 

The American Cancer Society attributes some of the disparities in survival to later stage of diagnosis among African-Americans, a lower likelihood of receiving high quality treatment, as well differences in tumor characteristics and genetic and immune factors. 

Why is it important to understand these disparities? Inequities affect us all, regardless of whether you’re a member of the affected population or not. It is not just a social justice issue, it’s an economic issue – estimates of the costs of cancer to Kansas are approximately $2 billion annually, according to the American Cancer Society. These inequities represent lost human potential, decreased productivity and increased health care costs. 

A look at Kansas’ population 

Kansas has a diverse population, including many groups that have been historically neglected when it comes to healthcare. This includes a rapidly growing Hispanic community, African-American urban poor, Native Americans, immigrant Asian populations and elderly rural whites. 

A study found that cervical cancer incidence rates among women residing in rural areas were 15 percent higher than those of women residing in metropolitan areas. Other studies have found that rural residents are more likely to be diagnosed with more advanced cancer and to die of cancer than are those living in urban areas. Survivors have higher risk for a number of poor health outcomes many years after their cancer diagnosis. 

Closing the gap

As Associate Director of Health Equity at KU Cancer Center, I have been working to develop a comprehensive program that aims to bring more equity to cancer care in Kansas. The goals of our program are to: 

  1. Identify, implement and fund research critical to reducing cancer-related health disparities,
  2. Ensure health disparities are addressed at the levels of basic discovery, clinical trials and community engagement, 
  3. Engage with communities to ensure the needs of underrepresented populations are identified and addressed, 
  4. Develop specific, targeted research interventions in collaboration with those groups to reduce cancer disparities, 
  5. Facilitate partnerships with community and health care clinics to promote early detection screening, education and cancer prevention strategies, and 
  6. Coordinate efforts across programs to increase recruitment of underrepresented populations into cancer research.

Roy Jensen, MD, pictured lower right, participating in our Collaboration Exploration event. Here KU Cancer Center researchers worked together  to find ways to partner and address health disparities.Recently, we hosted a Collaboration Exploration event, convening KU Cancer Center researchers to brainstorm research partnerships that address health disparities. We are also providing new pilot grant funding to encourage the creation of new research teams to address issues that contribute to the disparities – from basic biological research to community concerns and social determinants of health. These are just a few of the ways we are working to create close the health disparity gaps. 

We know that everyone is unique, and people respond differently to the same approach or treatment. That is why it is critically important to ensure that all people are represented when it comes to cancer research and treatment. 

We are inspired and motivated by decreasing cancer mortality rates, but it is time for these advances to be felt across all populations.

Screening for Lynch syndrome and its impact on lowering risk for colon cancer

March 29, 2017

Pictured, L to R: Anwaar Saeed, MD, and Anup Kasi, MD, MPH.By Anwaar Saeed, MD, and Anup Kasi, MD, MPH

While colorectal cancer is the third most common cancer in both men and women, incidence rates have decreased over the past two decades. Consequently, mortality rates from colorectal cancer have also declined in men and women, reflecting this and improvements in early detection and treatment. Early detection is made possible through screening and colonoscopy

Our data show that if people aged 50 and older were screened regularly, we could prevent 6 of 10 deaths from colorectal cancer. Multiple efforts are underway, both nationally and locally, to expand colorectal screening to younger people who may be at higher risk. This includes those with a known history of colon cancer and those with known hereditary familial syndromes, like Lynch syndrome. 

Lynch syndrome is a genetically inherited disorder that increases the risk of colorectal and endometrial cancers and several other malignancies. In the U.S., an estimated 1 million people live with Lynch syndrome. Lynch syndrome was described in the medical literature in the 1950s, and much of the genetic etiology was uncovered in the early 1990s. Still, many patients remain undiagnosed or have a significant delay in diagnosis. This can critically impact affected patients and their family members. 

One way to identify people with Lynch syndrome is to obtain a family history for cancer and then apply risk-prediction models, like Bethesda and Amsterdam II criteria. If the patient meets the clinical criteria, then we can test for DNA abnormalities related to colorectal and endometrial cancers. If abnormalities exist, we can perform definitive germline genetic testing and offer counseling to determine whether an individual has Lynch syndrome. 

If the patient is diagnosed with Lynch syndrome, he/she is at risk for developing other Lynch-related cancers. Family members must undergo genetic counseling and germline testing for the disease as well. Lynch syndrome is associated with an autosomal dominant pattern of inheritance and is likely to clinically manifest in those with the abnormal gene. Family members diagnosed with Lynch syndrome are at risk of developing Lynch-related cancers in the future. 

Timely identification of Lynch syndrome is critical. Not only does it allow for cancer screening at an earlier age, it also has the potential to improve patient outcomes. In addition to subspecialized gastrointestinal oncology clinics, we also have a high-risk gastrointestinal clinic for patients with a family history of colon cancer or Lynch syndrome. This clinic focuses on primary prevention methods like screening colonoscopy, formulating surveillance plans and referrals for surgical intervention, if needed. 

Caring for colon cancer patients and their families provides us with tremendous insight and perspective. Their daily battles are heart-wrenching and motivate clinical researchers like us to continue our efforts fighting this life-threatening and potentially preventable malignancy. It is an honor and a privilege to care for our patients and make a difference in their lives using standard-of-care treatments, investigational therapeutics or chemoprevention approaches.

Colorectal cancer screening: the choice is yours

March 6, 2017

Have you been postponing your colonoscopy? Good news! You have a variety of options outside of this traditional screening method. If you’re like me, having options can make it easier to make the right healthcare decisions. And getting screened is the right healthcare decision – colorectal cancer is the second leading cause of death from cancer in the U.S. 

  • •  Everyone between the ages of 50-75 years of age should be routinely screened for colorectal cancer.

  • •  For colorectal cancer screening, people can choose to do simple tests at home once per year or clinical procedures once every 5 or 10 years in a clinical setting.

Tests performed at home

Fecal immunochemical test (FIT) also referred to as fecal occult blood test (FOBT) are done at home once each year. After passing stool, a sample is put onto a card, which is mailed to a lab for analysis. If the test detects blood hidden in the stool, the patient will need a follow-up colonoscopy.

FIT-DNA stool tests are tests that can be performed at home every 1 to 3 years. Patients collect stool samples at home and mail them to clinical labs to be analyzed. If the test indicates a need for follow-up, the patient will require a colonoscopy.

Tests performed in a clinical setting

A colonoscopy is a procedure performed by a physician in a clinical setting once every 10 years. A doctor puts a lighted camera in a tube inside a patient’s colon in order to see the inside of the colon. Suspicious growths are removed and checked by another doctor. Sometimes, removal of the growths can prevent cancer from developing. If a cancerous growth is detected by the procedure the patient is referred for treatment. 

Sigmoidoscopy is a procedure performed in a clinical setting once every 10 years with annual FIT/FOBT or every 5 years without FIT/FOBT. Sigmoidoscopy allows a physician to look at a select part of the colon where cancer is most likely to develop, rather than the entire colon.  Based on sigmoidoscopy findings, patients may need to have a colonoscopy, surgery, or other treatments determined by their physician.

Some people may be more likely to develop colorectal cancer, so you should talk to your doctor about the best test for you. However, everyone, even those with lower risk for colorectal cancer, should be screened regularly. After looking at the tests above, find the one you think will work for you. Let your doctor know which test you prefer and choose to be screened. Remember, when it comes to colorectal cancer screening, you have a choice.

  • •  Learn more about your colorectal cancer risk right now with this online quiz.

Screening: A national health priority

The Screen to Save program promotes efforts to encourage screening to save lives and increase outreach, awareness, and care provision in racially/ethnically diverse communities and rural areas.Increasing colorectal screening rates in the U.S. is a national priority and part of the 10 recommendations by the Blue Ribbon Panel for the Cancer Moonshot announced in October 2016. It is endorsed by the National Cancer Advisory Board.

In response to this, The Center to Reduce Cancer Health Disparities at the National Cancer Institute developed the Screen to Save program which promotes efforts to encourage screening to save lives and increase outreach, awareness, and care provision in racially/ethnically diverse communities and rural areas

The University of Kansas Cancer Center is proud to be a part of this initiative with screening and education events to take place throughout Kansas and Missouri over the next several months.

The connection between nutrition and cancer

March 3, 2017

About 1 out of 3 of the most common cancers are related to poor diet and a lack of physical activity. To prevent cancer, the American Institute for Cancer Research recommends changing three important dietary patterns:

  1. Increase the consumption of plant-based foods

  2. Limit the intake of red meat and alcoholic drinks

  3. Avoid processed meat, sugary drinks and salty processed food

Adopting a healthy lifestyle by following a good diet and being physically active is highly important during cancer treatments to support the body with nutrients and avoid weight change.

At The University of Kansas Cancer Center, our Nutrition Shared Resource group, which is comprised of nutrition experts, supports the investigation of novel nutrition strategies for cancer prevention and treatment.  

In this multi-part series, I’ve broken nutrition-focused blog and vlog posts into small, bite-sized pieces. I’ll highlight a few of the important discoveries made by researchers at KU Cancer Center, as well as nutrition tips for cancer patients.  

Good Nutrition Improves Cancer Therapy Outcomes: Supports Immune System

Bladder cancer survivors who have undergone a radical cystectomy (a surgical procedure that removes all or part of the bladder) are at significant risk of infection, rapid muscle wasting, and complications due to impaired immune function and post-surgical stress. Researchers at the University of Kansas Medical Center tested a nutrition drink high in arginine, omega-3 fatty acids, and vitamin A compared to a control drink, an identical nutrition supplement lacking the immuno-modulators. In this randomized pilot trial, we found that giving the nutrition drink before and after surgery reduced complications by 33 percent and most notably, reduced infections by 39 percent compared to the control drink.

The nutrients had immediate effects on immune and inflammatory responses, muscle sparing, and wound healing after cystectomy. While the results are encouraging, the team will next lead a national clinical trial to confirm whether this intervention can significantly reduce complications. 

  • What you can do now: In the meantime, cancer patients should choose a diet ample in fish, fruits, and vegetables to support the immune system.

Weight Loss Reduces Cancer Risk

Excess body weight contributes to as many as 1 in 5 cancer-related deaths and is associated with increased risk of at least eight types of cancer. It is important to avoid being overweight or obese, and staying as lean as possible. Weight loss actually reduces cancer markers in the blood and breast tissue of overweight women. 

Women at high-risk of developing breast cancer may reduce risk by avoiding obesity or losing weight if overweight or obese. Researchers at The University of Kansas Cancer Center found favorable effects on blood and tissue markers of breast cancer risk with a 10 percent weight loss in overweight and obese women. This team is leading several studies to test weight loss in combination with omega-3 fatty acids to prevent breast cancer. 

  • What you can do now: Eating a healthy and balanced diet plays a vital role in weight reduction. In addition, walking for at least 30 minutes or incorporating other physical activities every day helps to avoid becoming obese. 

Maintaining or adopting a healthy lifestyle is highly recommended to help prevent and treat cancer, and our experts at KU Cancer Center are always striving to identify innovative cancer-fighting nutrition strategies. If you or someone you love is diagnosed with cancer, reach out to KU for help. Cancer care can be very complex, but feeding one-self or a loved one can be simplified by a nutrition professional. Providing good nutrition can help families come together to help fuel a patient before, during, and after cancer treatment.


Staying mindful and resilient during times of transition

February 7, 2017

We face many transitions throughout life. Sometimes, when we are confronted by one of these changes, we choose not to follow through and go another way. Other transitions cannot be bypassed.

Cancer is a transition that, once diagnosed, cannot be avoided. After diagnosis, you go into action, receive your treatment and begin the cure. It’s a time filled with uncertainty, fear and hope. You hope you will complete treatment and live the rest of your life as a survivor.

You may experience a roller coaster of emotions. This is where having resilience skills comes in handy. If you have the skills to meet your transitions and move through them, you will come out on the other side stronger, wiser and more resilient. If you are resilient, your life will seem easier and more peaceful.

Resilience is the ability to bounce back in the face of whatever comes your way. Resilient people may be strengthened by their experience with stress.

Key characteristics of resiliency

Resilient people share certain traits, including optimism, hope, hardiness and the ability to identify and express their emotions. Decades of research identifies 10 key characteristics of resilience:

  • • The ability to self-calm
  • • The ability to self-replenish
  • • Hope
  • • Optimism
  • • Hardiness
  • • Sense of coherence
  • • Exercise and other self-care
  • • Nonjudgment and self-supporting attitudes
  • • The ability to express emotions
  • • Social support

The good news is that there is considerable research showing that people can learn to be more resilient. Resiliency training benefits include greater personal balance, enhanced creativity, improved mood, increased effectiveness in the workplace and in personal relationships, and greater physical health. However, resilience training is like exercising or reducing caloric intake for weight loss. It only works if you incorporate it into your daily life.

Improving your resilience

Resilience is about maintaining inner reserves and focusing on what you need in the moment. Actions you take in response to stressful situations play a central role in determining how well you maintain and replenish reserves.

Some of the best ways to calm and replenish yourself:

  • Try exercise. A 10-15 minute brisk walk can have an effect comparable to a tranquilizer.
  • Employ mindfulness. This is the ability to focus on the moment. Research shows that people who can do this are happier. If you are driving, focus on driving. If you are cooking, focus on the activities of preparing your meal. Mindfulness meditation involves focusing on your breath, a word or phrase.
  • Apply relaxation. There are many techniques to help you relax, and deep relaxation greatly contributes to rebuilding your resources.
  • Use self-talk. Say calming and reassuring things to yourself. This can be considered a form of self-hypnosis, and is more powerful than most people think. Try it and observe the effects.
  • Visualize calming scenes. Imagine yourself in a calming situation, e.g., on a pristine beach listening to the surf, a beautiful mountain trail or next to a rippling stream. Find images that match your experience and interests.
  • Listen to a calming recording, music or voice. Select recordings that calm you and use them when needed to become more serene.
  • Connect with the energy of calming people. People range from those who are calming and comforting to those who aggravate your tension. When stressed, try to be around people who help you rebuild your resources and avoid those who make things worse.
  • Go into predictable calming routines. For example, something habitual that you love to do. One of the best ways to calm yourself and rebuild your resilience resources is to identify actions ahead of time that replenish you and be on the ready to put them to use when they are needed.

Through classes, activities and education, Turning Point: The Center for Hope and Healing, a community resource of The University of Kansas Health System, helps participants increase resilience so they may live life to the fullest, even while experiencing chronic disease. Learn more.

The power of social media and your health

January 13, 2017

Research shows that patients are increasingly seeking healthcare information on the Internet, making it the third most common online activity. Combined with social networking, which accounts for nearly one-fifth of all time spent online, it’s understandable to see social media’s powerful effect on the way people approach their health.

As an NCI-designated cancer center, The University of Kansas Cancer Center embraces these facts and recognizes the value social media can bring to those seeking information about cancer. By providing cancer patients, survivors and their families with rich resources for understanding their disease, we can empower and engage them to take greater control of their own health.

The number of people living with cancer exceeds 14 million. We all know someone affected by it. The University of Kansas Cancer Center is committed to communicating this indispensable information to as many people as possible. Consequently, I am issuing you a challenge. With your help, we can provide those affected by cancer with information, tools and support via The University of Kansas Cancer Center’s social media channels.

If you don’t already, follow The University of Kansas Cancer Center Facebook page, as well as our other social media channels including Twitter, Instagram, YouTube and Pinterest. Like, share and comment to help amplify these important messages within your own communities.

By following the cancer center’s Facebook page, you will have access to the latest cancer information and be one step closer to being entered for a Lunch & Learn session. We will select one winner and a guest to have lunch with me and tour one of our cancer center labs. You’ll meet some of our researchers and learn about the latest cutting-edge cancer research. Here’s how to become eligible:

  1. Visit The University of Kansas Cancer Center Facebook page (or search for “The University of Kansas Cancer Center” on Facebook. Be sure to look for the gray badge next to our name)
  2. Click “Like” under the main image at the top of the page.
  3. Tag at least two friends in the comments of any of our posts.

You have the opportunity to help those suffering from the devastating effects of cancer. Help us make a difference in the health and wellness of our community. Like, share and comment to help amplify important cancer information within your own communities.

Lowering your risk for cervical cancer

January 6, 2017

Thirty-year-old women with babies in diapers, toddlers in daycare and children in grade school should not be fighting cervical cancer. Sadly, I have seen two of these young mothers in the last week.

Several months after giving birth to twins, Kelly* was having irregular bleeding. She saw her gynecologist, who noted mild changes on Kelly’s pap smear. But the bleeding wouldn’t stop. Within six months, Kelly was in my office with advanced cervical cancer.

Kelly, who recently completed chemotherapy and radiation therapy, brought her three-year-old daughter to our last visit. The adorable little blonde with big rosy cheeks was worried because her mommy was spending so much time at the doctor’s and needed to have another exam. I had good news for her mom. She had responded well to treatment and was in remission.

My second patient is not as fortunate. She came to me with progressive cervical cancer, which did not respond to chemotherapy or radiation therapy. Dana* lit up as she told me about a recent visit with her boys, ages 8 and 10. She showed me pictures of their adventures at the library and their paintings of the fall leaves.

Dana no longer has the strength to care for them herself and relies on her family for assistance. At 32, Dana is facing an incurable cervical cancer. When we meet, we work together to optimize her quality of life, address her pain and symptoms, discuss her future wishes and plans for herself and the boys. I address her palliative care needs to improve the quality of her life in the time she has remaining.

Cervical cancer is predominantly caused by the human papillomavirus (HPV), and today this is a preventable illness. Pap testing has reduced cervical cancer rates significantly in industrialized countries, but it hasn’t yet brought the number of cases to zero. Both of my patients had regular screening exams and yet their HPV-related cervical cancers were not caught in time.

We can, and must, do better.

A vaccine that targets cancer-causing HPV has been available since 2006. In October, an improved, two-dose version of the HPV vaccine which targets nine different types of the virus was approved by the FDA. For 10 years, we’ve had a vaccine that can prevent cervical cancer and multiple other HPV-related cancers. And yet, millions of adolescent girls and boys are not being vaccinated. Kansas and Missouri have two of the lowest rates of HPV vaccination in the country.

My hope for the future, and my challenge to the community during Cervical Health Awareness Month this January, is to support the vaccination of girls and boys against the HPV virus. We must do this so we do not have another 30-year-old mother facing an incurable cervical cancer diagnosis. We cannot allow our women and girls to slip through the cracks when we have a safe and proven method of preventing this horrible disease.

*Names are changed to protect patient confidentiality.

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