Take Action: Participating in Clinical Trials-Hayley's Story

In 2010, the University of Kansas Breast Cancer Prevention Center received a $4.5 million Promise Grant from Susan G. Komen. This purpose of the grant is to investigate whether an estrogen found in flax-seed – a commonly used supplement – can reduce the risk for breast cancer.
 

 

 

Kandy Powers, ARNP and
Hayley Woods

Hayley Woods decide to become a part of something bigger than herself! After hearing about the research study from her local Komen Affiliate, Hayley called the Prevention Center to see if she could potentially qualify for the study. After an initial consultation, Hayley was invited back to have a fine needle aspiration to collect a tissue sample. This sample will be the final determination of whether or not Hayley will be accepted into the trial.

Most people don’t know what to expect when it comes to qualifying or participating for a clinical trial. Hayley shares the experience in her own words:

 

“I arrived at the Breast Research Center, and I was a little bit nervous. I was about to have needles put in me! I was checked in right away and taken to my exam room. The staff was all very helpful and friendly. They quickly put my mind at ease. The nurse took my vitals and went over some paperwork with me that thoroughly explained the procedure, the after care, and what I should expect. She also explained a little bit more about the research study, and I was then feeling ready and prepared.

Kandy and Amy came in to give me an initial exam and prepare me for my fine needle aspiration. They made casual conversation that relaxed me and made me feel comfortable. After explaining all of the steps, they turned on some soft music and low lights. I thought I was at the spa for a moment! They continued to engage me in conversation that kept my mind distracted and my nerves calm.

They cleaned the area that they would be working around, and everything was ready. The only discomfort I experienced the entire time was a little pinch when the numbing medication was put in. After I was numb, I felt no pain at all, from start to finish. The procedure only took about 20 minutes, and I just rested and talked with the ladies as they worked.

After they were done, I applied cold packs for a few minutes before they bandaged me up. It was over! The results will take about 4 to 6 weeks, and then I will know if I qualify for the flaxseed trial. I would definitely do it again, and I would recommend it to anyone interested.

I will get to follow-up regularly with the clinic and stay on top of my breast health. This is important to me, especially as a person without good health insurance. This is a great opportunity to keep up on my own health and contribute to research!

It only took about four weeks to get my aspiration results back. I was excited to find out that I did qualify for the study! The office set me up with another appointment to come back and finish the final steps to get me enrolled in the study.

I was asked to fast the night before my appointment, and when I arrived, I had a blood draw. As usual, the office staff was very friendly and helpful. I did not have to wait long periods of time, which was important when I had my four-year old with me!

I went over the last details with Jessica, the study coordinator. I feel very confident about my role in the study, which is as simple as taking my study medication (with no known side effects) each day, and checking back in with the clinic regularly. As I finished signing my paperwork, I found out that the study pays me too! I had no idea! That made for a wonderful surprise, and now I’m ready to start the study and do my part in Breast Cancer Research!”

Are you thinking about participating in a clinical trial? Don’t hesitate! It has been a great experience and opportunity to give back!

 

Talk About It Tuesday: Research Saves Lives

Susan G. Komen has sustained a strong commitment to supporting research that will identify and deliver cures for breast cancer since it began over 30 years ago. This commitment has resulted in important progress that has contributed to major advances in breast cancer since our founding in 1982. With increasing investments over time, now totaling over $800 million, Komen is now the largest non-government funder of breast cancer research in the world. 
 

 

Our research focus has evolved over the years. In the beginning we focused on understanding the basic biology of breast cancer. As we learn more about the factors that make cancer cells grow and spread, we are able to invest more in the translation of this knowledge into treatment, early detection and prevention. Our focus is to support work that has significant potential to lead to reductions in incidence and mortality within the decade. Our work isn’t done until our vision of a world without breast cancer is reached.

Susan G. Komen. . .

• began with a single grant for $28,000 in 1982
• has funded research each year since we began (31+ years)
• has invested more than $800 million in research since 1982 to support over 2,200 research grants
• is the largest non-government funder of breast cancer research in the world
• currently manages more than 500 active research grants totaling more than $285 million
• has supported a broad range of research from basic biology to treatment to survivorship

For more information on current Komen funded research:

2013 Research Fast Fact

HER2 Research

Metastasis Research

Triple Negative Breast Cancer Research

Vaccine Research

MYTH MONDAY: Progress HAS been made toward breast cancer cures

Over the last 30 years significant advances have been made that have led to decreased mortality and increased survival rates. Progress in both early detection and treatment has led to improved survival for people of all ages and races, and with all stages of breast cancer. Between 1990 and 2009, breast cancer mortality (death) declined by 33% among women in the United States. And 30 years ago, the five-year relative survival rate for breast cancer was about 74%. Today, this number has increased to 98%.

• Increased awareness has led to better screening and earlier detection which leads to better prognosis and survival. 
• Surgical procedures have been developed that are less invasive, use sentinel node biopsy, and improved reconstruction that lead to better quality of life post surgery. 
• Significant strides in research have led to more options and more effective chemotherapy and hormone therapies. 
• New targeted therapies have been developed and now even implemented for specific tumor types. 
• New treatments for metastatic breast cancer have not only extended survival, but more importantly dramatically improved quality of life.

Over the past 20 years, great progress has been made in the early detection and treatment of breast cancer. As a result, the number of breast cancer survivors continues to rise.

For more information on progress

 

 

Survivor Spotlight Saturday: Peggy Johnson

This week, we have looked at advances in science over the past thirty years, the importance of the advocates who have worked for awareness, education and research, and how you can add your voice to the chorus #Komen 365 as we move move forward.  It is only fitting that our Spolight this Survivor Saturday should shine on Peggy Johnson.

Peggy shares:

As a breast cancer advocate my dedication to research is even stronger now than ever.  After 23 years as a volunteer and advocate for Susan G. Komen, I was diagnosed with triple negative breast cancer in 2012.  No one wants to be diagnosed with cancer, but I knew my treatment would be the best it could be thanks to the advancement of research and clinical trials.  Twenty-three years ago we didn’t even know what triple negative breast cancer was or how to treat it.  Today we still don’t completely understand triple negative breast cancer, but we’re making headway because the research community is constantly looking for better treatments and better outcomes.  This is due in large part to Susan G. Komen, the leader in non-government funded research resulting in new treatment therapies.  

My cancer was stage I and I had options not available 23 years ago.  I had a lumpectomy and sentinel node biopsy, both the results of research and clinical trials.  Both are improvements in treatment, less invasive and as effective as more radical treatments.  Today patients are living longer, better lives because research has provided us with options not available 23 years ago.  

Nancy Brinker’s vision to rid the world of breast cancer is as important today was it was 30 years ago. Making sure women know about early detection, have access to quality cancer care and support are vitally important, but if we can’t treat them once they are diagnosed we’ve failed.  And failure isn’t an option.  Susan G. Komen’s dedication to research is one reason I still volunteer today.  I’ve lost too many friends to breast cancer and frankly I don’t want to lose anyone else.  Komen’s vision for translational research is important. Research which will be in the clinic or the community within a decade means women like me, my daughter Molly and my friends will have the benefit of our research investment.  It doesn’t get more important than that. 

Access to Care in Western Kansas: Following the Funds in Kansas

“To find the barriers that keep women from getting screened and benefiting from early detection, you have to get out there.” said Nicole Spray, APRN with the HaysMed Breast Care Center (BCC), a three time grant recipient of Susan G. Komen Kansas.

This year the grant is providing for a Breast Health Nurse Navigator to enhance cancer care in Western Kansas. The new Nurse Navigator has been added to guide patients through each step of the health care system from breast biopsy, diagnosis, treatment to survivorship. She will also identify barriers to care such as transportation or financial issues, language barriers and help link patients to resources that will help overcome these barriers. Additionally, the Nurse Navigator will help identify patients who are at high risk for breast cancer and link them with resources to help them manage their increased risk. Lastly, she will help raise awareness of the needs of cancer survivors.  There are over 820 breast cancer survivors living in the region in need of quality survivorship care.

“When you have a patient sitting in front of you,” said Spray.  “You have to be ready to listen.”

She recalled a woman who was confined to a wheelchair, making it difficult to come in to the center for screening from five counties away.  They were able to schedule a mammogram through a mobile screening unit, finding a way for the patient to receive care.

Over the last two years, the Breast Care Center has also used Komen Kansas grant funds to host breast awareness events in Norton, Sharon Springs, Oakley and Hays. This year BCC was able to provide additional educational programs in Scott City and Osborne as well as a breast cancer survivors retreat in Hays.

“A focus group of survivors helped plan the retreat topics,” Spray said.  “This led to a successful event.”

In discussing the educational outreach funded by Komen Kansas, Spray added that you never know the impact of a simple act.  She remembered an instance when a woman received an invitation to the educational outreach event.  She was unable to attend, but the card reminded her she needed to schedule a mammogram.  She was diagnosed, all because of a card in the mail.

When we talked to Nicole Spray, she was excited about the Breast Care Center move to a new area at HaysMed, 2200 Canterbury, located just inside Entrance C, the Main Entrance.  Patients will now be able to complete routine breast exams and imaging tests at the same location.  In addition the BCC also provides risk analysis for women who have not been diagnosed with cancer along with genetic counseling and testing.  Survivors will be able to access more in-depth health monitoring and counseling for lifestyle changes such as diet and exercise.  Any side effects resulting from cancer treatment can also be monitored.

“Women are anxious when they come into the Breast Care Center,” stated Spray.  “Now we have a space that is convenient, calming and soothing.”

Since the opening of the Breast Care Center in May, 2011, 140 women have been diagnosed with breast cancer; an equal amount of women have been treated for precancerous conditions of the breast. Ninety women have had genetic BRCA counseling and testing.

“We are honored to receive Susan G. Komen grant funds”, said Dr. Anne O’Dea, Medical Director of the Breast Care Center. “We feel passionate about providing quality, comprehensive breast services to the women in Western Kansas and are fortunate to have these additional resources to meet the needs for those in our region.”

For more information about the Breast Care Center in Hays

Take Action: Join the Chorus #Komen 365

Advocate, by definition, is a person who argues for or supports a cause or policy.  More specific, it is a person who works for a cause or group; a person who argues for the cause of another person.  As a volunteer with Susan B. Komen, I have met many wonderful “advocates” who work tirelessly to bring awareness to breast cancer, to fund research into the cause and treatment of breast cancer, impact policy in the pursuit of a better quality of life for breast cancer survivors and to bring about life without breast cancer.  A group of wonderful people who argue for and support a cause.

But just as Susan B. Komen started as a promise between sisters, Komen volunteers are often "more specific" and take up the cause of another person.  A mother, a sister, a brother, an aunt, a friend, a co-worker, the list goes on.

This October, there are many ways you can add your voice to the chorus #Komen 365.

§         Encourage a friend to get a mammogram, go with them, have a mammogram party to get the whole group screened

§         Start today planning your participation in next year’s Race, join a committee, become a team captain, get your company involved

§         Check with your Kansas affiliate on how you can join state and federal advocacy to impact policy

§         Look into clinical trials and research studies.  Maybe you will find one to participate in. http://www.cancer.gov/clinicaltrials/search

§         Add your ideas of how you already add your voice or plan to add your voice to the chorus #Komen 365 

To join the chorus #Komen 365

Talk About It Tuesday: Survivorship Today Compared to 30 years ago …

Over the past 30 years, much progress has been made in the fight against breast cancer. More than thirty years ago, when Suzy Komen was told she had breast cancer, people did not say the words breast cancer out loud. It was not talked about in social circles, there was no easy internet access and it certainly wasn’t discussed on mainstream media. Our strides in progress have been significant and we are grateful that talking about breast cancer is no longer taboo.

WAVES OF PROGRESS:

AWARENESS:
First , increased awareness has led to better screening and earlier detection which leads to better prognosis and survival.

RISK FACTORS:
Over the past 30 years, researchers have identified many factors that increase breast cancer risk and a few factors that lower risk. Genetic tests for certain mutations are now used, we know that certain lifestyle choices such as exercising regularly, maintaining a healthy weight, limiting the use of alcohol or menopausal hormones can have an impact on your risk for breast cancer. We know now that breast cancer is not contagious, contrary to the belief just a few short decades ago. Many risk factors are still unknown and many are simply out of our control (the two most common risk factors for breast cancer are being a woman and getting older). Although we have learned a lot, we still do not understand what causes breast cancer to develop at a certain time in a certain person. It’s likely a combination of risk factors, but why a certain combination of factors might cause cancer in one person, but not in another, is still unclear.

TREATMENT:
Other significant advances over the last thirty years have been made that have led to higher survival rates.  Surgical procedures have been developed that are less invasive, use sentinel node biopsy, and improved reconstruction that lead to better quality of life post surgery.  Significant strides in research have led to more options and more effective chemotherapy and hormone therapies.  New targeted therapies have been developed and now even implemented for specific tumor types.  And finally, for metastatic breast cancer, new treatments have not only extended survival, but more importantly dramatically improved quality of life.

SURVIVORSHIP:
There are almost three million breast cancer survivors in the United States today (more than any other group of cancer survivors). Thirty years ago, even when breast cancer was caught early (confined to the breast) the five-year relative survival rate was about 74 percent. Today, the five – year relative survival rate is now 98 percent! And more importantly, the mortality rate has declined 33 percent since 1990 due to early detection and effective treatment.

While Komen continues to work to find a cure for breast cancer, the sheer number of survivors shows the great strides that have been made in early detection and treatment. Today, most breast cancer survivors lead long and fulfilling lives, and Komen is with these survivors at every step of their journey.

Komen Chief Scientific Advisor, Dr. Eric Winer, discusses the scientific progress made in the fight against breast cancer over the past 30 years.

MYTH MONDAY ANSWERS

Did you know that the majority of women diagnosed with breast cancer have no immediate family history? Only about 13% of women diagnosed have an immediate female relative (mother, father, sister, brother or child) with breast cancer. The two most common risk factors for breast cancer are being female and getting older.

 

All women are at risk … Know your Risk!

• Talk to both sides of your family to learn about your family health history
• Talk to your health provider about your personal risk of breast cancer

Inherited genetic mutations:
Only 5%-10% of breast cancer cases in the U.S. are from an inherited genetic mutation, such as BRCA1 or BRCA2. Most breast cancer cases are due to a spontaneous gene mutation, an error in a gene that has occurred in a single cell during your lifetime.
The cause of breast cancer is not known. Although everyone is at risk for breast cancer, having an immediate family member (a parent, sibling or child) with a history of breast cancer increases your own risk of breast cancer by nearly twice the risk compared to a women without a family history.

Click here to learn more about risk factors and prevention

 

Breast cancer can happen to anyone, even if you don’t have an immediate family history. Know you risk and know what it is normal for you. Talk with your provider about your personal risk of breast cancer.
 

Survivorship in Rural Kansas: Following the Funds in Kansas

Weight at diagnosis and weight gain post diagnosis for breast cancer survivors are associated with increased risk of breast cancer recurrence and death.  Rural women have significantly higher obesity rates, and have less access to survivorship care and weight control programs. We discussed this with Susan G. Komen Kansas grantee Christie A. Befort, Preventive Medicine and Public Health, University of Kansas School of Medicine, who is part of a team researching the role of weight control intervention as a key strategy for prevention of breast cancer recurrence in rural populations. The study examines the impact of a group-based weight control intervention delivered through conference call technology to obese breast cancer survivors living in remote rural locations.

 

The 18 month program begins with a six month weight loss phase.  The intervention includes a reduced calorie diet incorporating prepackaged entrees and shakes, physical activity gradually increased to 225 min/week of moderate intensity exercise, and weekly group phone sessions.  This is followed by a one-year maintenance phase with either group phone sessions every other week or a newsletter with the material discussed in the phone sessions.
 

“It is much harder to maintain weight loss,” Befort states.  “The program gives continued support that allows participants to ask questions not only about nutrition and exercise, but talk about other survivorship issues. We're going to help them with sustaining a lifestyle change," Befort adds. "We've all been impressed by the women. It makes the work fun and exciting and worthwhile." ”

The intervention has produced >10% weight loss as well as significant improvements for quality of life including mood, body image, and sexuality. But the research project has produced a lot more than data: participants not only lost weight but also camaraderie has flourished among the women who became acquainted during conference-call sessions. Where do we go from here?  The last research group has enrolled in the Hays/Salina area with about 30 women through 2015.

“The idea is to produce a program that not only works, but is cost effective for sustainability.” adds Befort.  “We are currently research funded, but hope to see policy change that will move preventative programs like this to be paid by health insurance.”

For more information

 

Take Action: Rehab and Strength Training for Survivors

If you were to have knee surgery, physical therapy is always thought to be part of the standard rehabilitation process. But after breast cancer surgery, physical therapy is not always routinely suggested. This is unfortunate, since following breast cancer surgery and treatment, you may experience: pain, swelling, loss of movement and strength of the involved arm, scarring, fatigue, neuropathy, and difficulty with daily activities.  

According to Susan Palmer, PT with Palmer Physical Therapy for Women current research shows that early post-surgical physical therapy can be beneficial in addressing these issues. 
 

Scar tissue, which is the body's way of healing from surgery, can result in very dense tissue under your incision, which is painful and which can restrict your arm's range of motion.  This can put you more at risk for a painful condition known as frozen shoulder. While a physical therapist may not be able to restore one hundred percent of your pre-surgery level of shoulder function, early treatment increase the odds that you'll regain range of motion and strength.

Numbness and/or nerve sensitivity is often experienced at your surgical site. Manual therapy can help restore sensation and relieve nerve pain caused by scar tissue impinging on nerves. Physical therapy can be very effective at releasing scar tissue and thus reducing nerve-related pain.

Cording is a moderate to severe painful tightening that extends down your arm.  This may develop if you've had either a sentinel node biopsy or an axillary node dissection.  Your armpit area can also be painful due to scar tissue. Over time, this condition may resolve on its own, but with manual therapy and therapeutic stretching, it's likely to resolve much more quickly.

Fibrosis and skin tightness can result from radiation after mastectomy surgery that may cause posture and range of motion problems. Manual therapy can reduce these issues and, if initiated early, may prevent them from ever becoming a problem.

 

Risk of lymphedema can be reduced by appropriately progressed strength training.

Palmer adds that chronic pain and postural problems can appear years later if rehabilitation is not complete following breast surgery and treatment. 

 

It is reasonable for survivors to expect to be 98% or better of their prior level.  Therapy can help you get back to that prior level of function and living a healthier, more active lifestyle.

 

Palmer is a member of the Women’s Health, Oncology, and Orthopedic Sections of the American Physical Therapy Association.

 

Talk About It Tuesday: Living Healthy!

Many factors are linked to breast cancer risk. Some risk factors, like being a woman and getting older, are not things you can change. But other factors, like choosing to lead a healthy lifestyle may help lower your chances of getting breast cancer.  First make sure to know factors that may add to your risk.  And make healthy lifestyle choices! 

Start by maintaining a healthy weight and eating right. 

• Eat at least 2 ½ cups of fruits and vegetables every day.
• Choose 100 percent whole grain foods (like 100 percent whole grain breads and cereals, brown rice, popcorn and quinoa) more often.
• Limit red meat and processed meat (choose chicken, fish or beans instead).
• Cut down on "bad" fats (saturated and trans fats), and eat more "good" fats (polyunsaturated and monounsaturated fats, like olive and canola oil).
• Get enough vitamin D and calcium every day. For women and men ages 51 to 70, this means 600 IU of vitamin D and 1,200 mg of calcium. For men ages 51 to 70, this means 600 IU of vitamin D and 1,000 mg of calcium.

Let’s get moving and be physically active. How can physical activity affect breast cancer risk? Exercise can help with weight control. For postmenopausal women, being lean lowers the risk of breast cancer. And, physical activity may lower estrogen levels in women, which can also protect against breast cancer. Physical activity may also boost the body’s immune system so that it can help kill or slow the growth of cancer cells.
 

Finally, limit alcohol intake.  If you drink alcohol, limit to drink less than one drink of alcohol a day (for women and fewer than two drinks a day for men). Those who drink alcohol should try to get enough folic acid, either through a multivitamin or foods like oranges, orange juice, leafy green vegetables and fortified breakfast cereals.
 

These are choices you can make to lower your risk.

Facts for Life:  Healthy Living

 

 

Early Detection Does Work: Following the Funds in Kansas

When the roadblock to screening is a combination of economic barriers, problems with transportation, access-related factors, cultural barriers, lack of knowledge and awareness of breast cancer, and misunderstanding of recommended screening frequency, Susan G. Komen Kansas grantees step forward to knock these barriers down.  We visited with Marcela Cousins, Clinical Community Coordinator with the Kansas Department of Health and Environment (KDHE) about an exciting new program launching this October.

 

Life is HOT (Healthy Options Today) is a new initiative through Early Detection Works for beauty salons in Wichita to educate African American women about the importance of breast health and screenings and to encourage regular mammograms with incentives.  The idea was born when Marcela Cousens was asked the question “what do you do when you are sitting in the chair at a salon?”

“When I said read a magazine,” Cousens said, “she then asked me what if there were messages on the cape written upside down?”

Kicking off this month, Life is HOT will work with local beauty professionals to incorporate the Life is HOT cape (with health messages) and window/mirror decals to encourage conversation about a healthy lifestyle and motivate clients to get mammograms by offering a $10 coupon for a return salon visit for those who do. 

“We are excited about the kick-off luncheon.” Cousins said. “We are starting small with 20-30 salons in the Wichita area, but hope to see the idea spread across the state.”

Breast cancer is the most common cancer among Kansas women. An estimated 2,000 Kansas women will be diagnosed with breast cancer each year, with around 400 related deaths. Increasing survival rates depends on early detection.  Women without insurance or underinsured will be referred to Early Detection Works, a program through KDHE.  The KDHE Cancer Prevention and Control Program seeks to reduce the morbidity and mortality from cancer through prevention of cancer when possible and routine screening when appropriate. Other areas of interest include access to quality diagnostic services and treatment including access to clinical trials, as well as survivorship issues and if necessary, compassion and care at the end of life.  The program provides breast and cervical cancer screening services through service providers located across the state. It addresses other comprehensive cancer issues through a network partners who are interested in reducing the burden of cancer in Kansas.

http://www.kdheks.gov/edw/ks_women.html

 

Take Action: Five Good Reasons to Get a Mammogram

“Being health conscious, I started getting mammograms at age forty, even though there is no history of breast cancer in my family.  Due to regular screening, tissue changes were noticed ten years later.  I would like to point out, the tumors were located close to my chest wall, the prior test and physical exam was clear; I am not sure how big they would have had to get to be felt through self examination. The cancer turned out to be invasive and aggressive, a mammogram saved my life!”

 

This October many survivors are telling stories like the one above, encouraging their family, friends, co-workers, anyone who will listen to schedule a mammogram.  Susan G. Komen as well as the American Cancer Society, the American College of Obstetrics and Gynecology, the Society for Breast Imaging, and the American College of Radiology  recommend that yearly screening mammography should begin at age 40, unless there are circumstances that would suggest a higher risk.  You and your physician should discuss your risk factors and determine the best course of action for you.

“I don’t know if it's fear or just the busyness of life that keeps women from getting their screenings. It is anxiety-provoking for a lot of women, but when caught early your prognosis is so much better.”

It is easy to put off having your mammogram, especially if you aren’t experiencing any symptoms and don’t have any reason to worry.  One of the best reasons for getting a mammogram is for the people who love you, but here are five more:

5.  Breast cancer risk increases with age, 1 out of 8 women will have breast cancer in their lifetime.     

4.  Regular mammograms give radiologists a basis for comparison, which helps doctors find small changes in breast tissue to detect cancer as early as possible.

3.  A screening mammogram usually takes just 20 to 30 minutes to perform.

2.  It’s only uncomfortable for a few seconds.

1.  Early detection can save your life.   A mammogram is a key way to detect breast cancer early, which increases chances for successful treatment.
 

“My message is take care of yourself first; otherwise you won’t be any good for your family.”

Sometimes the roadblock is a combination of economic barriers, problems with transportation, access-related factors, cultural barriers, lack of knowledge and awareness of breast cancer, and misunderstanding of recommended screening frequency.  Susan G. Komen Kansas grantee, The Witness Project of Kansas is an African American community-based outreach program that utilizes African American volunteer cancer survivors and community lay health advisors for breast cancer awareness and education.  The Witness Project is helping women navigate the health care system, enrolling more women in Early Detection Works, in the hope of ultimately lowering the African American breast cancer mortality rate in Kansas.

“A mammogram saved my life!  I no long sweat the small stuff and look at each day as a gift.  I have always liked the color pink but now it has a totally new meaning in my life. I am wearing it as a Survivor!”   

 

Talk About It Tuesday: GET SCREENED!

You have heard the statistics numerous times already: Women in the United States have a 1 in 8 (or about 12 percent) lifetime risk of getting breast cancer. This means that for every eight women in the U.S. who live to be age 85, one will be diagnosed with breast cancer during her lifetime. Getting regular screening tests is the best way for women to lower their risk of dying from breast cancer. Screening tests can find breast cancer early, when the chances of survival are highest.

What Screening is right for me?
Regular breast cancer screening is important for all women, but even more so for those at higher risk. If you are at higher risk of breast cancer, you may need to be screened earlier and more often than other women.
A woman is considered at higher risk if she has one factor that greatly increases her risk or several factors that together increase risk. Your health care provider may use different tools to assess your risk and help you make a personalized breast cancer screening plan.
Factors that greatly increase breast cancer risk include:

• A mutation (or a 1st-degree relative with a mutation) in the BRCA1 or BRCA2 gene;
• A strong family history of breast cancer, such as a mother, sister, etc. diagnosed at age 40 or younger;
• A personal history of invasive breast cancer;
• A personal history of ductal carcinoma in situ (DCIS), lobular carcinoma in situ (LCIS) or atypical hyperplasia; and/or
• Radiation treatment to the chest area during childhood or young adulthood

A mutation (or a first-degree relative with a mutation) in the TP53 or PTEN genes (These gene mutations can lead to Li-Fraumeni syndrome, Cowden syndrome or Bannayan-Riley-Ruvalcaba syndrome. People with one of these syndromes or who have a first-degree relative with one of these syndromes have an increased risk of breast cancer.)
It is important to determine your personal risk. Talk to both sides of your family about your family health history and talk with your health care provider about your personal risk of breast cancer. Assessing your risk will help your doctor develop a personalized breast cancer screening plan for you.
If you are at higher risk talk with your health care provider to determine which screening tests are right for you – and when they should begin. The tests may include clinical breast exams, mammograms and/or breast MRI.
Continue the discussion at each visit with your doctor as your family history or personal history may change over time, which may then change your screening plan.
Women at average risk are to:

• A mammogram every year starting at age 40;
• A clinical breast exam (CBE) at least every three years starting at age 20 and every year starting at age 40; and,
• Sign up for your screening reminder at www.komen.org/reminder

There is not a predetermined age to stop having mammograms or CBE’s. As we age, women who are in good health and could benefit from treatment (if breast cancer were found) should continue to get mammograms. Breast cancer risk increases with age, and mammography does not appear to be less effective, for instance, in women 70 and older. Women of all ages should continue to talk with their doctors about what screening tests are right for them.

Finally, be aware of breast changes.
You are the best judge of your own body and the best advocate for your health. Know what is normal for you! Be aware of the look and feel of your breasts. Regardless of your age or the date of your last screening, be sure to contact your health care provider anytime you notice any of the following changes in the look or feel of your breasts:

• Lump, hard knot or thickening inside the breast or underarm area;
• Swelling, warmth, redness or darkening of the breast;
• Change in the size or shape of the breast;
• Dimpling or puckering of the skin;
• Itchy, scaly sore or rash on the nipple;
• Pulling in of your nipple or other parts of the breast;
• Nipple discharge that starts suddenly; and/or,
• New pain in one spot that doesn’t go away.

Survivor Spotlight: Georgia Ellis

During the last days before the 1995 Race for the Cure a beautiful and graceful woman walked into the shabby little race office in the Wichita Mall and said,

“I am a breast cancer survivor and I am here to help.” 

She was the first person to ever volunteer that a committee member hadn’t begged to help.
 

From that moment, Georgia Ellis has used her understanding of survivors and her community to be a blessing to Komen’s mission and the women we serve.  In the early years, Komen Kansas hadn’t started the survivor recognition program and as of yet, weren't doing much with our local survivors.  Georgia was willing to share about being a survivor to give a better understanding of survivorship, something very much needed.  But Georgia’s willingness to share did not stop there.

Terry Burnett and Peggy Johnson knew they weren’t reaching the African Americans in our community, and had written a grant to start a program in Wichita.  But they also knew they couldn’t be the ones to develop the program. When asked to take the lead, Georgia willingly said yes. And it doesn’t seem she has stopped saying yes since.  Georgia has served as chair of Witnessing in the Heartland, held several positions on the Board of Directors including President for two years, being the first African American President of a Komen affiliate.  She served on an Advisory Committee for the CDC’s National Breast and Cervical Cancer Early Detection program, as well as many Komen National committees.  Even when she moved temporarily to Dallas to help care for her mother, she became a volunteer in Texas.

If you visit the Affiliate office in Wichita, you are greeted by Georgia’s quiet kind manner and beautiful smile .  As Office Manager, she continues to serve and provide help in many ways.  And be sure to check out her shoes, she has one of the best shoe collections of any woman in Kansas!

 

 

Taking It To the Streets: Following the Funds in Kansas

How do you encourage women (and men) to pay attention to their breast health?  According to Erma Patterson, BSN, Health Educator with the Geary County Health Dept., you go to the churches, you go to the beauty shops, and you talk to people at Wal-Mart or Dillons. 

“I’ve literally walked the streets of Junction City getting the education and information out.” said Patterson.   “The town knows me as the breast cancer lady and that’s okay.”
 

Since breast cancer and other women’s health issues were not discussed in the African American culture Erma grew up in, it wasn’t until after she began working in breast cancer education that she found out how much the disease has touched her life.  First she found out both her husband’s mother and aunt were survivors.  Then the disease took the life of a friend at age 37 and renewed Patterson’s mission.

“What is missing, how do we get the message across?” Patterson asked when discussing how to help African American women understand the need for regular mammograms and breast exams.

Patterson feels the support of Susan G. Komen, her administrator and the community.  The Komen grant is providing breast health screenings, mammograms/follow-up referrals, and breast cancer risk education to 3000 African American women in Geary County.  And Erma Patterson will continue her work to encourage women (and men), young and old to take care of their breast health and to help them navigate the process.

“If someone needs information, I’ll be there with my Komen DVD and education materials; whatever needs to be done.”

The Geary County Health Department has been serving the Junction City, Geary County and the Fort Riley area since 1949.

For more information about this and other services in Geary County

Taking Action: The Cancer Whisperer

Reaching out to breast survivors in her community is how Sherry Peterson became known as the “Cancer Whisperer”.  Diagnosed 10 years ago with breast cancer, Sherry said it was hard.  She didn't have many choices for support, so she wanted to be there for others. Sherry started by reaching out to an acquaintance that she had found out was going into surgery after a diagnosis. 

 

“I left a message that I had heard about your diagnosis, if you want to talk,” Peterson recalled.

That led to another friend, so it became three for coffee.  Then another and another so now it’s seven.  Peterson knows that it helps to be with others who have been through it. 

“Sometimes they aren’t ready when you first make contact,” she said. “But then we make room for one more at coffee.”

There are many ways to reach out to help those in your community.  Sometimes it is being there to go with a friend to be outfitted for a wig. Sometimes it’s driving your friend to treatment or an appointment.  Sometimes it’s just a call to say I’m here if you want to talk.  Thoughtful gestures big and small mean so much to survivors, whether they’ve just been diagnosed or completed treatment years ago. By giving support you show strength and love. Peterson has found that she is now connecting with people through Facebook.  By taking action and reaching out to help survivors in her community, Sherry Peterson is making a difference in Kansas.

For more information on how you can Take Action
 

The Faces of Breast Cancer: Who is Affected?

Who is affected by breast cancer? Being female and getting older are the two most significant risks for breast cancer. One in 8 women in the U.S. will be diagnosed with breast cancer in her lifetime. However, breast cancer does not only affect older women.

Young Women
Breast cancer knows no age boundaries. Breast cancer in young women is rare – about five percent of breast cancer cases occur in women under age 40. However, breast cancer can and does happen to women under age 40. If you are a young woman and feel that something is not normal, advocate for yourself until you get care that addresses your concerns. No one should ever assume that just because you are young you cannot get breast cancer.
Women diagnosed before age 40 are more likely to have a mutated BRCA1 or BRCA2 gene that puts them at a greater risk of developing breast and ovarian cancer. If a woman carries a mutated gene, she may have a 30-85 percent chance of developing breast cancer in her lifetime. Having an immediate family member (parent, sibling or child) with breast cancer also increases a young woman’s chance of developing breast cancer. So while the risk of developing breast cancer is low for most women, it is higher for some. Young women who are diagnosed with breast cancer should discuss future plans with their physician, as some treatments may affect fertility. Young women may also experience concerns that are different from those of older women. There are several resources tailored to young survivors:

• Call the Susan G. Komen® Breast Care Helpline: 1-877 GO KOMEN (1-877-465-6636) Visit the Susan G. Komen® website: www.komen.org
• Search www.ShopKomen.com for these booklets: What’s happening to me?, What’s happening to the woman I love?, What’s happening to mom?, What’s happening to the woman we love?
• Contact Fertile Hope: 1-866-965-7205 or www.fertilehope.org
• Contact Young Survival Coalition®: 1-877-972-1011 or www.youngsurvival.org

Men
Though boys and girls begin life with similar breast tissue, over time men do not have the same complex breast growth and development as women. At puberty, high testosterone and low estrogen levels stop breast development in males. Some milk ducts exist, but they remain undeveloped, and lobules are most often absent. However, breast problems, including breast cancer, can occur in men.
Men account for one percent of all breast cancer diagnoses. Survival rates for men are about the same as for women with the same stage of cancer at the time of diagnosis. However, men are often diagnosed at a later stage because they may be less likely to report symptoms.
The most common sign of breast cancer in men is a painless lump or thickening in the breast or chest area. However, any change in the breast or nipple can be a warning sign of breast cancer in men, including:

• Lump, hard knot or thickening in the breast, chest or underarm area (usually painless, but may be tender)
• Change in the size or shape of the breast
• Dimpling, puckering or redness of the skin of the breast
• Itchy, scaly sore or rash on the nipple
• Pulling in of the nipple (inverted nipple) or other parts of the breast
• Nipple discharge

If a man notices any of these signs or other changes in his breast, chest area or nipple, see a health care provider right away. Some men may be embarrassed about a change in their breast or chest area and put off seeing a health care provider, but this may result in a delay in diagnosis. Survival is highest when breast cancer is found early.

Co-Survivors
Breast cancer affects not only the survivor, but also the co-survivors – the people supporting the survivor through treatment and beyond. At Susan G. Komen, we consider a person a survivor from the moment a breast cancer diagnosis is confirmed. Co-survivors can be family members, spouses or partners, friends, health care providers or colleagues. Anyone who is there to lend support from diagnosis through treatment and survivorship is considered a co-survivor. Many different co-survivors may enter the survivor’s life over time, lending support in a variety of ways.
Directly upon diagnosis, there may be a whirlwind of tests and treatments. It goes by so quickly that the survivor and co-survivors may have little time to process the emotions that accompany a breast cancer diagnosis. And when treatment is completed, the new normal sets in. The new normal is difficult to explain because it is different for each individual. The survivor may have a new perspective on life, which may include a desire to make a difference in the world, concerns about recurrence or metastasis, or a reorganization of life’s priorities. Co-survivors are often impacted by the new needs of the survivor.
Sometimes it is hard to know what to do or what to say. Komen’s educational materials and resources can help co-survivors understand and meet the needs of someone going through this experience.

• Fact sheets on topics such as: “What to say when you don’t know what to say” or “What to do when you don’t know what to do”
• Create a network of support through online communities at sites such as: lotsahelpinghands.com or CaringBridge
• Connect with other co-survivors: Read stories of hope and encouragement from co-survivors and breast cancer survivors, and share your story to help inspire others.
• The co-survivor message board (Family, Friends and Caregivers) is a place to share ideas and support with people who know how you feel.
• Find more information here: http://ww5.komen.org/BreastCancer/FriendsampFamily.html