EduCare Announces the Release of the Breast Cancer Survivorship Handbook

EduCare is excited to announce the release of the Breast Cancer Survivorship Handbook. This new book was built around a quote from the author, Judy Kneece, RN, OCN, “Survivorship is the challenge to no longer focus on cancer, but to focus on the gift of life after cancer.” This book is designed to empower breast cancer patients to build a better life for themselves when treatment is complete.

The Breast Cancer Survivorship Handbook addresses the next challenge for a breast cancer patient—managing her survivorship. Just like a breast cancer diagnosis, survivorship brings its own set of challenges and adaptations. Survivorship also requires managing psychological and social issues along with physical changes and follow-up care.

The Breast Cancer Survivorship Handbook empowers a patient to thrive by explaining lingering breast cancer treatment side effects and how to manage them. The book addresses the seldom-discussed issues of sexuality and the management of lingering depression and anxiety and, most importantly, what to do about them. Throughout the book are quotes from patients, inspirational thoughts to encourage and “how to” tips.

Topics Included in the Book:

  • Managing the Fear of Recurrence
  • Understanding Family Cancer Risk
  • How to Communicate With Healthcare Providers
  • Follow-up Care After Breast Cancer
  • Potential Side Effects After Breast Cancer Treatment
  • Caring for the Surgical Arm
  • Managing Fatigue After Cancer Treatment
  • Managing Menopausal Side Effects
  • Dealing With Memory Changes
  • Dealing With Body Image Issues
  • Fertility After Treatment
  • Dealing with Numbness in Your Hands and Feet
  • Managing Chronic Anxiety and Depression
  • Understanding Hormonal Medications
  • Making Personal and Legal Decisions
  • Spirituality’s Role in Recovery
  • Evaluating Different Cancer Treatments
  • Planning for a Healthy Lifestyle
  • Patient Resources
  • Tear-Out Work Sheets
  • Healthcare Symptoms Record

Included with the Breast Cancer Survivorship Handbook, is a Breast Cancer Treatment Summary, a Breast Cancer Treatment Summary Quick Reference Card and a Survivorship Care Plan folder.

Orders for the book may be made through the company website at www.EduCareInc.com or by phone at 843-760-6064.

EduCare Announces the Release of the Eighth Edition of Breast Cancer Treatment Handbook

EduCare is pleased to announce the release of the eighth edition of the Breast Cancer Treatment Handbook. First published in 1995, this easy-to-use book features the newest treatments, continuing research about survivorship, graphic illustrations and practical tips for helping the patient navigate the cancer journey.

With more than 295,000 copies in use, the Breast Cancer Treatment Handbook is a trusted patient navigation guide for up-to-date clinical information, clear explanations of tests and treatments and recommendation-free guidance. The new edition now offers additional material on emotional recovery, survivorship and healthful living. Eighteen tear-out worksheets help a patient prioritize and organize the questions she must ask her medical team in order to actively participate in her treatment. An expanded glossary, a drug reference section and an updated resource list further empower patients.

“Understanding the disease, treatments, emotions and recovery from breast cancer is just as important as the medical treatment a woman receives,” says Judy Kneece, R.N., OCN, President of EduCare. “We wrote this book for every woman diagnosed with breast cancer to inform and empower them with a complete road map for their journey from diagnosis to recovery.”

EduCare Inc., a dedicated breast health education company, was founded in January 1994 by Judy C. Kneece, RN, OCN. In the past 18 years, Judy has trained over 2,200 breast health navigators to guide patients through their cancer journey.

The eighth edition of Breast Cancer Treatment Handbook is available directly from EduCare. Orders may be made through the company website at www.EduCareInc.com or by phone at 843-760-6064.

Access to Oncofertility Options for Rural Cancer Patients

Cancer Navigators working in smaller rural cancer centers often face a challenge in arranging a timely fertility consult for a newly diagnosed cancer patient. Time constraints due to the need to begin cancer therapy, along with the distance required for the patient to travel for the consult, frequently cause patients to forgo the fertility preservation options discussion before treatment. Following cancer treatment, many patients want to investigate their fertility options.

Cancer Navigators not working in a facility with a fertility specialist, now have access to an online  Fertility Patient Navigator, providing the opportunity to better educate young patients about fertility options.  The new website, hosted by the Department of Obstetrics and Gynecology at Northwestern, has been designed to assist young patients in learning about their reproductive options in the midst of a cancer diagnosis or after treatment for cancer. The website, Patient Navigator for Fertility Preservation, provided by the Oncofertility Consortium of Northwestern University, has a Fertility Patient Navigator, Kristin Smith, available to answer questions about reproduction options surrounding a cancer diagnosis. She is experienced in talking to patients and providers about the best reproductive options for cancer survivors at all stages of treatment.

The web site has an interactive tool to provide information for patients before or after puberty, and before or after cancer treatment.  At his/her convenience, the patient can watch tutorial videos explaining how fertility is impacted by chemotherapy, radiation therapy or surgery.  Personal stories from others who have selected different types of fertility preservation are also available for viewing. This new website should be an excellent resource to help Cancer Navigators educate their patients about fertility options.

Have any of you working in rural areas dealt with this issue? How have you managed it?

How to Conquer the Fear of Cancer Recurrence

Fear of recurrence is the number one reported fear of cancer survivors. A cancer patient laments, “I thought that once I completed cancer treatment I could go on with my life. Instead, I have found myself hypersensitive to every ache and pain and dreading my follow-up visits to the oncologist.”

This cancer survivor’s confession is all too common. Having escaped a death sentence, many survivors are now serving a new life sentence in a prison of fear. The fear of cancer recurring has robbed them of their joy and energy. To heal completely, survivors often find that they have to relearn how to live. This should be a major goal of a Navigator—helping patients gain a new perspective on life after cancer.

Having cancer is similar in some ways to other traumatic experiences such as the death of a family member or being in a car wreck. Facing the suddenness and severity of life and death issues changes something deep within. One thing that changes is one’s outlook on life. One survivor said it was like “repricing everything around her with new price stickers.”  Surviving cancer makes one conscious of what was almost lost and what can never be regained. This awareness makes some afraid that they may again face the trauma of cancer. Some survivors develop Post Traumatic Stress Disorder (PTSD), a state in which life is significantly altered by these fears.

In the same way, someone does not stop driving after a car wreck or having friends after someone they love dies, a person cannot stop living and working towards a positive life after cancer. A survivor must find ways to overcome their fears and return to a sense of “normalcy.”  However, what one decides is normal will have to be redefined because cancer has changed the way they see things.

Cancer interrupted a life already in progress. Old dreams and goals may have died along the way. It’s important that survivors grieve for those very real losses. Those with a heightened sense of fear may not have sufficiently dealt with the trauma that cancer caused in their lives. Since they are dealing with both present fears and issues from the past, their coping measures may not be sufficient. Identifying their losses and making peace with them will help them live a fear-less life.

Navigator Tips for Helping Patients Overcome Their Recurrence Fears

Challenge Survivors To:

  1. Identify exactly what you fear and do all that you can reasonably do to prevent it. Make a plan to improve your health. Write your planned changes down so you can review them and work your plan.
  2. Schedule and keep regular check-up appointments to monitor your body.
  3. Write a letter to fear. This may sound silly, but it works. Write it with a “revengeful attitude” and tell FEAR that you will no longer listen to its constant taunting. Tell fear how you chose to think, believe and live instead. Without an “instead” plan you will rubber-band right back into fear.
  4. Try an experiment. Write down every little thing you enjoy and are grateful for. See how you feel after five full minutes of writing. Schedule time to be reflective and grateful every day. Develop your attitude of gratitude. Plan to start writing short notes to people who touched your life for the better. Tell them now grateful you are for what they did and for what they mean to you.
  5. Develop an emergency kit. This kit can be a letter to yourself reorienting you on how you want to live and what you will think and believe. Ask a friend to be your emergency kit. Teach them to let you vent and then remind you of your chosen beliefs.
  6. Make a plan for what you will do if cancer does recur and how you will live if it happens. This sounds hard, but when you face this mentally and make plans there is a sense of power knowing you have plans, no matter what happens.
  7. Determine to live a positive, faith-filled life. It is has a positive effect on your immune system. Build, buy or make something that reminds you of your choice to live positively in the present.

Fear paralyzes a person. Conquering the fear of recurrence is essential for a cancer patient to reenter life as a triumphant cancer survivor. Many survivors are living life free of disease, but prisoners of their fears of recurrence. Navigators can be the catalyst to help change her perspective of recurrence into a manageable fear. Navigators can coach the patient on how she can transform her fear into knowledge and empower her to live life as successfully after cancer as she did before cancer.

These are some of our suggestions that our Nurse Navigators and patients alike have found helpful. What other steps have worked for you?

 

 

How EduCare Taught Me to Start a Breast Center

In late 2010, I was approached about developing, de novo, a NAPBC-accredited breast center at a hospital in downtown San Antonio.  At the time, I had been retired from pathology for eight years and was living on a ranch in the Texas Hill Country.  Understandably, I was reluctant about returning to work (and the big city), particularly since I had only a hazy idea about what a breast center actually was.  Before dismissing the offer out of hand, though, I visited five accredited breast centers—two in Montana and three in Texas.  I was particularly impressed with the breast center at Community Hospital in Missoula, Montana.  The nurse navigator there used the COPE Library as her main source of patient educational material and NurseNav software for tracking patients.  She also showed me the big notebook that she had received during her EduCare training and called it her bible.  I was very impressed with her approach to navigating patients.  In fact, I loved the concept of a breast center with its chief purpose being to assist patients throughout their breast cancer journey.  I decided to accept the job.

In May 2011, I was hired at Metropolitan Methodist Hospital to be the Director of the Breast Center.  On my first day, I was shown to a windowless, closet-sized office on a patient floor.  There were some empty shelves, an empty file cabinet, and sheets of dust on the countertops.  There was no computer; there was no fax machine; there was no printer; there was a phone, but it was not activated.  I was to soon learn that there would be no significant secretarial or marketing support and, most troubling of all, there were no plans to hire a nurse navigator.  What’s more, the person in Administration who had championed the idea of a breast center (and with whom I had interviewed) had just been promoted to CEO at another hospital; the remaining people in Administration had even less knowledge about breast centers than I did—and, as far as I could tell, their other responsibilities were more pressing than the new breast center.

To many people this would have been an unacceptable departure point for establishing a new breast center, and, truth told, a part of me wanted to call it quits right then and there.  But, another part of me was drawn to this seemingly insurmountable challenge.  For starters, no one else in San Antonio had been successful at developing a hospital-based, accredited breast center.  What did I have to lose? Besides, I liked the idea of being my own boss.  That I was the boss of no one in a dusty little room was beside the point—sort of.

Despite my lack of experience, I did have enough sense to know that the glue of any breast center is a nurse navigator.  Soon after I was hired—before there was even an acceptable place to meet with patients—I was able to convince Administration that a nurse navigator was, indeed, essential and began searching for someone who was qualified and might be interested in the position.  At the time, Lorraine Infantino had, among her other duties, the responsibility for administering conscious sedation to patients undergoing stereotactic biopsies.  She seemed like the perfect candidate.  Unlike me (a pathologist who had spent most of her professional career behind a microscope), Lorraine had vast experience with direct patient care.  Much of her career had been as an OR nurse, but she also had past administrative experience, including being the Director of an oncology floor.  Lucky for me, she was interested in the position of nurse navigator but agreed that specialized training was indicated.  Taking at face value the solid recommendation of the nurse navigator in Missoula, we signed up for the August 2011 EduCare training sessions in Atlanta.

That trip to Atlanta turned out to be a watershed event for Lorraine and me.  After just four days with Judy Kneece and her colleagues, we had a much clearer idea about how to proceed with our fledgling breast center—a sharper big picture, you might say.  For me, one of the most important realizations was that no two breast centers are the same.  People involved with developing a new breast center must be creative and resourceful, because what works at one center may not work at the next.  That seemingly self-evident concept gave me the confidence to trust my own instincts and to use old-fashioned common sense when I encountered a problem or identified a need.  Interestingly, this also made me less afraid of making mistakes.  When I was a pathologist, there was zero tolerance for error, but when starting a breast center, trial and error is okay, maybe even essential.  After all, administrative flexibility ultimately furthers the goal of never compromising patient care.

Lorraine came away from her training in Atlanta with a much better grasp of her role as a nurse navigator.  The experience also helped her refine her philosophy for navigating patients:  (1)   while providing emotional support and education, she avoids directly influencing the patient’s treatment decisions or interfering with the recommendations of the patient’s physician(s); (2)   while helping the patient surmount barriers to health care and services, she also attempts to empower the patient during this difficult time by helping her to help herself.  This is done by providing individualized, accurate information and by “greasing the skids” for the patient with phone calls and emails.

So, where are we now?  Well, for one thing, we’ve been out of the closet, so to speak, for nearly a year.  We have a little suite of offices with a patient library and a break room and some nice artwork on our walls.  We have computers and printers and a fax machine.  We hold bimonthly Category 1 CME breast cancer conferences that are well-attended by medical staff and hospital personnel.  Arguably most important, though, is that we now have a champion in Administration.  The significance of this cannot be overemphasized.   And, as a concrete measure of just how much progress we’ve made:  Metropolitan Methodist Breast Center will have an onsite survey for NAPBC accreditation on August 22, 2012.  If successful, ours will become the first hospital-based, accredited breast center in South-Central Texas.  Not bad.  Not bad at all.

Deborah Douglas, M.D. is the Director of Metropolitan Methodist Hospital Breast Center in San Antonio, Texas.  She is an eleven-year survivor of breast cancer, a retired pathologist, and is the author of Foot Soldiers:  Stories from the Breast Cancer 3-Day Walk.     

Can Exercise Reduce Breast Cancer Risk?

We know you’ve heard about the many benefits of exercise to your overall physical and cardiovascular health. But do you know the relationship between exercise and your immune system, and its’ role in minimizing risk of getting certain types of cancer? Today we’ll explore how exercise can help minimize your breast cancer risk.

Exercise increases the body’s ability to provide adequate oxygen to your cells, which is essential for cell metabolism.  Increased oxygenation boosts the immune system, elevates  mood, and helps control obesity.  Evidence continues to mount that exercise later in life may become a factor for reducing breast cancer incidence.

A recent study recruited women with breast cancer from 31 hospitals in or near New York City. These cases were aged from 20 to 98 years old, and were diagnosed with breast cancer between 1996 and 1997. The controls were women who had never been diagnosed with breast cancer, and were matched to cases based on age. This is important, as age is a significant risk factor for breast cancer. The study included 1,508 cases and 1,556 controls to collect data for impact of exercise on breast cancer occurrence.

Study Outcomes:

When adjusting for age, the researchers found that:

  • Regular physical activity during adolescence was not associated with a difference in risk of developing breast cancer.
  • Women who reported engaging in 10 to 19 hours of physical activity during their reproductive (pre-menopausal) years had a 33% reduction in the odds of developing breast cancer after menopause, compared with women who reported no regular activity during these years (odds ratio 0.67, 95% confidence interval 0.48 to 0.94). No significant differences were seen at other activity levels.
  • Women who reported engaging in approximately 9 to 17 hours of physical activity during post-menopausal years had a 30% reduction in the odds of developing breast cancer after the menopause, compared with women who reported no regular physical activity during these years (odds ratio 0.70, 95% confidence interval 0.52 to 0.95).

How did the researchers interpret the results?

The researchers concluded that women can “reduce their breast cancer risk later in life by maintaining their weight and engaging in moderate amounts of physical activity”.

Back to the Basics

With all the vast number of treatments for breast cancer, most having numerous debilitating side effects, it may be time that we go back to the basics of good health and include exercise as a treatment recommendation to reduce breast cancer incidence. Exercise in moderation, based on the individual’s health, comes with many benefits and usually has no cost associated, unless one decides to join a gym or exercise class. Exercise may be the best value in reducing breast cancer incidence.  One thing is certain: Participating in regular exercise later in life will increase one’s overall health, improve mood, and control obesity.

Do you, as a Nurse Navigator, recommend exercise for your breast cancer patients? Does your Breast Center offer any programs to help facilitate patients’ exercise during treatment?

“Chemo Brain” Validated In New Study

Feeling like you are not “all there” mentally after chemotherapy treatment? Take heart: You’re not alone, and it’s not your imagination.

Breast cancer patients often complain of memory problems and foggy thinking after chemotherapy, often referred to as chemo brain.  Often healthcare providers dismiss their complaints and attribute the change to stress and the acute fatigue caused by chemotherapy treatments.

A recent study from the Netherlands Cancer Institute published online February 27, 2012 in the Journal of Clinical Oncology, shows that women who underwent a once-common chemotherapy regimen known as CMF between 1976 and 1995 score slightly lower on cognitive tests that measure word learning, memory and information processing speed than women without a history of CMF cancer treatment.  This study gives validation to patient complaints that chemotherapy had impaired their memory.

CMF is no longer the standard of care for breast cancer; however, there are many breast cancer survivors alive today who received this regimen 20 or more years ago and who may be experiencing such cognitive difficulties.

Study:

  • 196 women with breast cancer who had received CMF chemotherapy (six cycles following surgery) between 1976 and 1995 were compared to women without cancer.
  • The study was conducted between November 2009 and June 2010.
  • Patients underwent neuropsychological examination and were also assessed for depression and self-perceived memory problems.
  • The control group included 1,509 women who were enrolled in the Rotterdam Study (which is exploring risk factors for disease in the elderly) who underwent the same neuropsychological tests and assessments.
  • All women in the current study were between 50 and 80 years of age when they were first enrolled.

Result:

The investigators found that women who received CMF chemotherapy were more likely than the women in the control group without cancer to have lower scores on test of immediate and delayed verbal memory (ability to recall words), information processing speed, and psychomotor speed (coordination of thinking and hand movement, such as putting pegs in a board). The magnitude of the effects was comparable to approximately six years of age-related decline in cognitive function. The women who had received chemotherapy also had more memory complaints than the control women, but these complaints were not related to objective memory functioning.

The good news is that people with cognitive deficits can learn strategies to improve their daily life functioning which include establishing routines in activities of daily living and using memory aids, check lists and filing systems for organizing activities.

Has “Chemo Brain affected you? If so how did you manage your symptoms?

 

ASCO Comment:

Sylvia Adams, MD, ASCO Cancer Communications Committee member and breast cancer expert summarized, “As the number of long-term breast cancer survivors continues to grow and age, patients and their healthcare providers need to be aware of possible long-term effects of past chemotherapy. While there is currently no intervention to restore lost cognitive function, there are skills people can learn to help them manage their daily routines more easily.”

Study Author: Sanne B. Schagen, PhD, Netherlands Cancer Institute/Antoni van Leeuwenhoek Hospital, Plesmanlaan 121, Amsterdam, the Netherlands 1066

 

Study Results: Can Metformin Reduce Breast Cancer Incidence?

The diabetes drug, Metformin, commonly prescribed for management of adult onset of diabetes shows promising results in a clinical comparison of postmenopausal women for prevention of breast cancer development.

Study:  68,019 postmenopausal women, including 3,40l with diabetes at entry point, were observed for a mean of 11.8 years. During this time 3,237 invasive breast cancers were diagnosed and were confirmed by pathology reports.

Results Compared with that in women without diabetes, breast cancer incidence in women with diabetes differed by diabetes medication type (P = .04). Women with diabetes receiving medications other than Metformin had a slightly higher incidence of breast cancer (hazard ratio [HR], 1.16; 95% CI, 0.93 to 1.45), and women with diabetes who were given Metformin had lower breast cancer incidence (HR, 0.75; 95% CI, 0.57 to 0.99). The association was observed for cancers positive for both estrogen receptor and progesterone receptor and those that were negative for human epidermal growth factor receptor 2.

This one study presents evidence that Metformin may reduce breast cancer incidence.  Metformin has been used successfully for many years to control blood sugar. Additional studies are needed to confirm this finding in search for a drug that can be used for prevention and management of breast cancer.

Source:  American Society of Clinical Oncology, June 2012

Intra-Operative Pathology Margin and Node Assessment Prevents Additional Patient Surgery

Decreasing breast cancer patient morbidity is of foremost concern for a Breast Health Navigator and their multidisciplinary team.  Having breast cancer surgery is emotionally traumatic for a patient. Finding that a second surgery is needed because of positive margins or positive nodes, increases a patient’s physical morbidity and prolongs their emotional stress. Not only is the patient impacted, the costs associated with a second surgery are higher as shown by a recent study at the University of Michigan Comprehensive Cancer Center.  The study reported on the impact of intraoperative pathology consultation for breast cancer patients.

Methods: The center compared the 8 months before the establishment of a pathology laboratory, when intraoperative pathology consultation was not available, with the 8 months subsequent, when it was routinely performed.

Results:

  • The average number of surgeries per patient decreased from 1.5 to 1.23, and the number of patients requiring one surgery increased from 59% to 80%.
  • Re-excisions decreased from 26% to 9%.
  • Frozen section allowed 93% of node-positive patients to avoid a second surgery for axillary lymph node dissection.
  • A cost analysis showed savings between $400 and $600 per breast cancer patient, even when accounting for fewer axillary lymph node dissections based on the American College of Surgeons Oncology Group 2011 data.

Conclusions:

  • Incorporation of routine intraoperative margin/sentinel lymph node assessment at an outpatient breast surgery center is feasible, and results in significant clinical benefit to the patient.
  • Use of frozen section decreased both the time and cost required to treat patients.

American Journal of Surgery

Original Article Link:

ABSTRACT: Development of an intraoperative pathology consultation service at a free-standing ambulatory surgical center: clinical and economic impact for patients undergoing breast cancer surgery

Vast Differences Found Between BRCA1 ER Positive and ER Negative Breast Cancers

We recently came across this data that we want to share with each of you:

BRCA1 germline mutations are one of the main causes of hereditary early-onset breast and ovarian cancer. Recent analysis of BRCA1 mutations conducted by researchers from the Institute of Cancer Research in London, provide additional insight regarding estrogen receptor status of the breast tumor. When a woman has a genetic confirmation of a positive BRCA1 mutation there is a difference between a diagnosis of an ER positive or an ER negative tumor. In more than 80% of cases, tumors arising in BRCA1 germline mutation carriers are estrogen receptor ER negative; however, up to 15% are ER positive.

Researchers reported a summary of the following characteristics found in the study:

Characteristic BRCA1/ER Negative BRCA1/ER Positive
 
Age  participants 54 52
Sex Female Female
Histological grade 3 2
Mitoses/10 HPF 81 15
ER Negative Positive
PR Negative Negative
HER2 Negative Negative
BRCA1 mutation c.124delA/p.Ile42TyrfsX8 c.4485-?_4986 + ?del/p.Ser1496CysfsX14
Somatic BRCA1 wild-type allele* Loss Loss
TP53 mutation c.927_928delTA c.951C > T
Molecular subtype Basal-like Luminal B
Tumor cell content GAP* (H&E) 71% (70%) 42% (60%)

This study confirms for Breast Health Navigators that a diagnosis of breast cancer, even when we have a confirmation that the tumor is BRCA1 positive, may vary in characteristics of the tumor.

The Journal of Pathology (2012); Pathological Society of Great Britain and Ireland