Breast Cancer Survivorship: Post-Diagnosis

2015KomenNCR-NBCAMGraphicFaceookCover-SurvivorshipBreast Reconstruction

Breast reconstruction can help restore the look and feel of the breast after a mastectomy. Performed by a plastic surgeon, breast reconstruction can be done at the same time as the mastectomy (“immediate”), or at a later date (“delayed”). Many women now get immediate breast reconstruction.

However, the timing depends on your situation and the treatment you will have after surgery. Not all women can have immediate reconstruction. It is important to discuss your options with your plastic surgeon, breast surgeon and oncologist (and your radiation oncologist if you are having radiation therapy).

There is no one best reconstruction method. There are pros and cons to each. For example, breast implants require less extensive surgery than procedures using your own body tissues, but the results may look and feel less natural. However, there are fairly few complications with any of the current techniques, especially when a woman is properly selected for a procedure.

Most breast reconstruction methods involve several steps. Both immediate and delayed reconstructions require a hospital stay for the first procedure. However, follow-up procedures may be done on an outpatient basis.

Screening/Re-diagnosis

Breast cancer survivors have an increased risk of getting a new breast cancer compared to those who have never had breast cancer. That is why it is important to get the follow-up care your doctor recommends. With proper follow-up, your doctor can keep track of how you are doing. This includes checking for and treating side effects. Follow-up care can also help ensure any recurrence of breast cancer can be found early when treatment is most effective.

The National Comprehensive Cancer Network offers these guidelines for follow-up of breast cancer treatment:

  1. Have a mammogram every 12 months. (For women treated with lumpectomy, have a mammogram six months after radiation therapy ends, then every 12 months.)
  1. Have a physical exam every three to six months for the first three years, every six to 12 months for years four and five, then every 12 months.
  1. Have a pelvic exam every 12 months if taking tamoxifen and have not had the uterus removed (have not had a hysterectomy).
  1. Have a bone health exam every one to two years, depending on a person’s risk factors.

Follow-up Tests

Depending on the symptoms, blood tests (including tumor marker tests) and imaging tests (including bone scans, CT scans, PET scans and chest X-rays) may be used to check for metastases. Using these tests to check for early metastases in people with no symptoms of metastases does not increase survival. For people with no symptoms of metastases, blood and imaging tests (other than mammography) are not a standard part of follow-up care.

Learn more about medical care after breast cancer treatment: http://ww5.komen.org/BreastCancer/MedicalCareAfterTreatment.html

We are celebrating National Breast Cancer Awareness Month. Connect with and follow Komen St. Louis and use #Komen365 to join in the conversation.

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Breast Cancer Survivorship: Psychosocial Factors and Breast Cancer

2015KomenNCR-NBCAMGraphicFaceookCover-SurvivorshipOne in eight women in the U.S. will be diagnosed with breast cancer in her lifetime, and more than 40,000 women and 440 men in the U.S. will die from the disease this year.

It is no surprise that, when faced with this news, women possibly experience shock, fear, sadness, disbelief or other feelings of psychosocial distress. Many women are able to adjust to and manage the disease, survivorship and their “new normal.” Some women will experience times of persistent psychosocial distress and would benefit from interventions.

Intervention is important because distress can interfere with a woman’s ability to cope with cancer treatment and can extend along the continuum from common feelings of vulnerability fear, and sadness, to true depression, anxiety, panic and feeling isolated.

Coping with a Breast Cancer Diagnosis

  • Learn about breast cancer at your own pace. Get information about clinical trials, treatment options and side effects. Doctors can make suggestions, but decisions should be made together.
  • Seek professional help if you need help managing your issues with breast cancer and how to cope with your feelings.
  • Talk to your doctor honestly about your breast cancer journey.
  • Be patient. Coping with breast cancer requires time, acceptance, a fighting spirit and support.
  • Lean on your network of family and friends. They can help:
  • Lend support from diagnosis through treatment and beyond
  • With day-to-day tasks
  • Gather information for you about breast cancer

Coping with Fear of Recurrence

It is normal to have thoughts and concerns about recurrence (being re-diagnosed with breast cancer). Fears of recurrence often peak right after treatment, but they can happen at any time. You can take control of your fears and learn effective triggers and coping strategies to keep these fears from consuming you. Some of these strategies include:

  • Get and stay informed. Learn about your cancer and risk of recurrence, continue your follow-up-care plan and take care of yourself.
  • Remove any blame. Never blame yourself for your cancer diagnosis. Cancer does not choose to punish people and it doesn’t discriminate. Cancer can happen to anyone.
  • Talk to your doctor and begin an appropriate exercise program. It can improve your mood and make you feel healthy, confident and strong.
  • Find ways to relax like yoga, meditation, prayer, etc.
  • Acknowledge your feelings. Talk to family, friends or other survivors. Journal, craft, or find creative ways to give voice to your emotions.
  • Focus on the positive. Find ways to stay hopeful and use your energy to stay as healthy as possible.
  • Control what you can. Empower yourself by taking an active role in your healthcare team.

Learn more: http://ww5.komen.org/BreastCancer/QualityofLife.html

Learn more about breast cancer recurrence: http://ww5.komen.org/BreastCancer/FearofRelapse.html

We are celebrating National Breast Cancer Awareness Month. Connect with and follow Komen St. Louis and use #Komen365 to join in the conversation.

Breast Cancer Survivorship: Family/Co-Survivors

2015KomenNCR-NBCAMGraphicFaceookCover-SurvivorshipA breast cancer diagnosis can be confusing, overwhelming and scary. Make sure that you build and search for a support community to support you in your journey. The support of others who care about you and your well-being can give you the strength to cope and retain a sense of control during this challenging time.

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 who are there to lend support from diagnosis through treatment and beyond.

Getting the Support You Need

There are three main types of support: informational, emotional and practical. You may need different kinds of support at different times and from different people.

Informational Support provides you with information about breast cancer. This might include finding facts about your type of breast cancer or gathering information about your treatment options. The Komen helpline provides free support services to anyone with questions or concerns about breast cancer: 1-877-GO KOMEN (1-877-465-6636).

Emotional Support looks after your emotional well-being. Emotional supporters listen to you, give you the chance to express your feelings and just be there when you need a friend.

Practical Support helps you with specific tasks. This might include rides to appointments, help with cooking or cleaning or going to the doctor with you to take notes. It may also mean seeking out any short-term financial assistance available.

Building your Support Community

Write down the names of people (co-survivors) who might support you in different ways. Your list may include your partner, children, other family members, friends, support group members, co-workers, clergy, neighbors or even health care providers. Look outside your existing network of support people, too. Have you met someone who has experienced breast cancer that you could reach out to?

Write down what kind of support you would like most from each person on your list. For instance, you may want your doctor to give you informational support, your best friend to give you practical support, your sister to give you emotional support, and your partner to give you all three types of support.

Tell each person exactly what he or she can do to help you and be specific. They can help with laundry, the bills, cleaning, etc. Sometimes all it takes is asking.

Have a “back-up” support person. Although it is true that you are the one who has breast cancer, the special people in your life have also been affected by your illness. Sometimes co-survivors will need to deal with their own feelings before they can support you.

Benefits of Co-Survivor Support

  • Reduced anxiety and psychological distress
  • Reduced depression and feelings of pain
  • Improved mood and/or self-image
  • Improved ability to cope
  • Improved feelings of control

What Can I Do? What Can I Say?

It doesn’t take time-consuming and heroic gestures to be a good co-survivor. Sometimes being there and listening is all that matters. Here are just a few ideas of what co-survivors can do to help a breast cancer survivor:

  • Run errands
  • Send a “Thinking of You” card
  • Take him/her to an appointment
  • Create an online calendar to organize meal deliveries, rides and other tasks
  • Bring together family, friends and coworkers to help support and care for your loved one through a caring social network and planner. CaringBridge provides sites where friends and family can stay connected and updated on someone’s health event and leave messages of hope and encouragement. The planner also gives you the power to set a community of support in motion by organizing meals, tasks and other helpful activities.

Advice for the Caregiver

Communicate: Keep communication between you and your loved one open and honest. Understand that he/she will often worry just as much about you as you do about him/her.

Understand: Learn more about the experiences of others diagnosed with breast cancer.

Talk Medicalese: Learn to better communicate with your loved one’s health care team. This can be a big help when you accompany your loved one to appointments.

Talking to Your Children About Your Diagnosis

Each child and each family is unique, and helping children cope with a loved one’s diagnosis can present many challenges.

However you decide to tell your children, be as open and honest as possible no matter how hard it may seem. You decide how much you want to say. Remember that children, just like adults, will fill in wherever you leave gaps. And because children may not know as much as adults, it is more likely that what they fill the gaps with will be wrong.

Encourage your children to talk to you and to ask questions. Giving honest, realistic answers to their questions will help lessen their fears. If you are going to be gone for a few days, if you are getting sick from the treatment or if you are losing your hair or a breast, let your children know why this is happening. Explain anything that changes their daily routine.

It is a good idea to let your children’s teachers know what you are going through — especially for younger children. The teachers may be able to help the children cope if they spend most of the day at school.

Finally, just as your children depend on you, you can depend on them too. They can be, and probably want to be, a source of support for you. They will want to listen to you, hug you, kiss you and spend time with you. Let them.

Learn more: http://ww5.komen.org/BreastCancer/FriendsampFamily.html

Learn more: http://ww5.komen.org/BreastCancer/SupportIntroduction.html

We are celebrating National Breast Cancer Awareness Month. Connect with and follow Komen St. Louis and use #Komen365 to join in the conversation.

The Inter(n)view: Shelby Narike

Guest Writer: Lexie Sprague, Komen St. Louis Public Relations & Marketing Intern

Shelby and Lexie, Susan G. Komen St. Louis Public Relations & Marketing Interns, Summer 2015

Shelby and Lexie, Susan G. Komen St. Louis Public Relations & Marketing Interns, Summer 2015

Meet Shelby Narike. Shelby is a 21-year-old from St. Louis, attending Tulane University as a double major in public relations and English. Although she does not know what she wants to do yet, and does not want to “grow up and graduate and be a real person!” yet, she is enjoying learning everything that fascinates her, and decided to spend the summer before her senior year as a fabulous intern for Susan G. Komen St. Louis. I got a chance to sit down with Shelby and really find out who she is, intern to intern.

I asked Shelby questions both Komen-related and not. I had gotten to know her fairly well through our time together at Komen, but this seemed like the perfect setting to ask her questions that wouldn’t get brought up in day to day conversation. Let’s see what she had to say.

Q: Tell me what brought you to Komen St. Louis.
A: I am a recent breast cancer survivor. I wanted to be part of an organization that fights to end breast cancer, and that is exactly what Susan G. Komen St. Louis does. I wanted to be part of the fight. The Komen public relations and marketing internship is perfect for my PR major, and the organization’s mission is one that I have a newfound passion for. Although I personally beat breast cancer, I wanted to help beat the disease on a larger scale. […] At Komen, breast cancer is not taboo. Komen does everything it can to be a formidable opponent to the disease, and that is what brought me there.

Q: If you could be in any animated movie, which one would it be?
A: I would want to be in Monsters, Inc. because I want to know what Monster Shelby would look like. I’m picturing a tiny, furry, mint green monster who looks cute and innocent…but who gets big and ferocious if need be.

I then found out that Shelby’s friends believe her spirit animal is the white tiger, although she sees her “playful, protective, pack-oriented” self as more of a dog. When she was five, an episode of ‘Madeline’ made her aspire to be a can-can girl; and the combination of turkey, mashed potatoes, gravy, pie, and family makes her absolutely adore Thanksgiving Dinner. When asked about her guilty pleasure, Shelby explained that she has not one, but three. While the little girl in her loves to color, the old lady in her loves needlepoint, and the classic twenty-one year old in her loves junk food and reality TV. And, if Shelby is running late, she said it is most likely because “one of my four dogs jumped on me with muddy paws and I had to go change my clothes.” Who doesn’t adore an animal lover? Here are a couple more of her responses:

Q: Looking back at your time at Komen St. Louis, what moments stand out?
A: The 17th annual Race for the Cure has been the highlight of this internship for me. I have loved all of my time here, but Race Day stands out in my mind. It was wonderful to see so many people supporting the same cause, on the same mission [to end breast cancer]; however, it was also chilling to see how many people have been affected by breast cancer just in the St. Louis area. I will always remember walking in the Survivors Procession with individuals who share similar stories. Race for the Cure is definitely an event that you need to experience first-hand. It exposed me to another support system that I did not even know I had.

Q: What is an item you have way too many of?
A: Chapstick. I lose chapstick like it’s nobody’s business. I buy the value pack at Sam’s Club. I try to carry one with me at all times and leave the rest on a shelf, but I always end up losing it and grabbing a new one and losing it and grabbing a new one and losing it and grabbing a new one. Then I’ll rediscover lost chapstick in strange places around my house. I’m convinced that I am always within five feet of chapstick at my house; I just have to find it. Those lost chapstick always turn up somewhere, but never when I need them most.

Shelby was so drawn to Komen St. Louis because she knows that not everyone has the same experience with breast cancer that she did. She had “unwavering confidence” in the team of doctors covered by her insurance, but she knows not everyone fighting breast cancer is as fortunate. She loves that it is Komen’s mission to help underinsured individuals receive the breast health care that they need. Everyone involved with Komen, Shelby included, wants to see a world without breast cancer.

So there you have it. Clearly, this twenty-one year-old breast cancer survivor has a whole lot of spunk and personality in her. I think the whole office would agree that Shelby is a joy to be around; her inspiring story and positive demeanor both help to fuel the fight against breast cancer. I’ll leave you today with a couple more fast facts about this Thanksgiving-loving, chapstick-losing Komen intern:

Favorite ice cream flavor: Mint chocolate chip
Netflix Addiction: Criminal Minds, The Office, The Walking Dead, Parks & Recreation, Breaking Bad, Scandal (Apparently she couldn’t pick just one!)
Celeb crushes:
Girl: Cara Delevinge
Guy: Jon Jay… I’m a St. Louis girl, so of course I have a Cardinal crush!
Favorite flower: Orchids or poppies (Take notes, boys!)
Starbucks order:
When it’s cold: tall cappuccinos or flat whites
When it’s hot: venti iced cappuccinos or green tea lemonades
Can’t live without: My family. And popcorn.

Thank you, Shelby!

Komen St. Louis Race for the Cure: Survivors Standing in Solidarity

Guest Writer: Shelby Narike, Komen St. Louis Public Relations & Marketing Intern

I experienced the big, pink whirlwind weeks leading up to the Susan G. Komen St. Louis Race for the Cure in the temporary position of intern; however, I experienced Race Day in my newly permanent role: breast cancer survivor.

Lexie Sprague and Shelby Narike, Komen St. Louis Public Relations & Marketing interns, Summer 2015

Lexie Sprague and Shelby Narike, Komen St. Louis Public Relations & Marketing interns, Summer 2015

I discovered the Komen internship opportunity because I was desperately trying to make sense of why I had breast cancer. After beginning my internship, I have learned that the why is unimportant; the how is what matters. How is this going to shape me? How am I going to use this? How am I going to make something good out of this?

I decided to make something positive out of my diagnosis by interning with Susan G. Komen, an organization that diligently fights the very breast cancer that rattled my life and continues to rattle the lives of others.

In the weeks leading up to June 13, 2015, I assisted the wonderful women of Susan G. Komen St. Louis in preparation for the 17th Annual Komen St. Louis Race for the Cure as a public relations and marketing intern. Lexie, my fellow intern, and I were warmly welcomed into the Komen St. Louis office. These first few weeks as an intern are a caffeine-fueled blur in my mind. My coworkers are magical women who somehow manage infinite tasks to insure the Race runs smoothly. Lexie and I tried our best to assist in anything and everything Race-related.

Lexie and I arrived in Downtown St. Louis at 5 am with eager anticipation of the day we had both only experienced vicariously through the memories of our coworkers. The office attire had been jeans and purple Komen Committee T-shirts all week long, but on Saturday, I transitioned from my well-worn purple tee to the pink shirt of survivors. Race Day was one day shy of the six “monthiversary” of my bilateral mastectomy and breast reconstruction. I put on my pink shirt with a brief wave of emotion at how far I had come.

Shelby and co-intern Lexie pink-ing their hair before dawn on Race day 2015

Shelby and co-intern Lexie pink-ing their hair before dawn on Race day 2015

I was diagnosed with stage one invasive ductal breast cancer on December 19, 2014 while home in St. Louis for winter break during my junior year at Tulane University. I was only 20 years old. My cancer experience has been a lucky one. I did not have to suffer through chemotherapy or radiation. At 21 years old now, I am cancer-free.

Wearing the pink survivor T-shirt was a big step for me. I spent the first few months of 2015 avoiding people. I do not mind talking about my situation, but I struggled to deal with people’s initial reactions. I felt an irrational guilt for watching people worry about me. I would much rather have cancer than have to watch someone I love have cancer. I know my loved ones feel the exact same way about me…they would rather be sick than have me be sick. I dreaded making people think that way.

St. Louis can feel so small to the point of always seeing someone who you know everywhere you go. I was sick of going out and having people ask me why I was not in New Orleans at school. I hated catching people off-guard with some variation of “Oh, yeah I’m not in school this semester because I have breast cancer. How are you?” I was tired of the shock, the sympathy, and the feeling I was ruining someone’s day. I did not want to leave my house.

Survivor Procession at the 2015 Susan G. Komen St. Louis Race for the Cure

Survivor Procession at the 2015 Susan G. Komen St. Louis Race for the Cure

Fast-forward a few months, and I’m leading the survivors’ procession at the Race for the Cure in front of thousands of people and multiple cameras. Helen Chesnut, Komen St. Louis executive director and breast cancer survivor, kindly asked me to join her in leading the procession. I was overwhelmed by the sea of pink-shirted survivors at the Race.

Raising money is not the only thing the Race does for those affected by the disease. The Race provides the opportunity for unity, for support, for awareness, for closure. The Race allowed me to be surrounded by survivors and loved-ones who were filled with conflicting relief, anger, hope, grief, comfort, pain, and resilience just like me. Not one person greeted me with shock or sympathy. I was greeted with immeasurable solidarity. We hugged, we shed tears, we breathed as a unified whole. It was in this moment that I found closure. I finally felt like I could close the short cancer chapter of my life.

It happened. It’s over. I’m standing here. We are standing here.

* * *

Shelby is a senior at Tulane University majoring in public relations and English at the School of Liberal Arts. She is a member of Chi Omega.

Komen’s Partnership with Joan Lunden

JoanLunden_Email header 1We are expanding Komen’s outreach through Joan Lunden’s new streaming subscription-based television network devoted to breast cancer, and overall health and wellness.

One year ago, Joan Lunden heard those unforgettable words: You have breast cancer. The daughter of a cancer surgeon, and one of the country’s most beloved television personalities and journalists, Joan knew she wanted to share her story publicly. That experience inspired this channel.

ALIVE with Joan Lunden is TV designed specifically for all of us going through the breast cancer journey as a patient, survivor, family member or friend. It offers daily video content that informs, educates, empowers, and offers access to Joan and breast cancer researchers, advocates and survivors, many of whom are funded or supported by Komen.

Joan Lunden Video StillJoan is offering Komen supporters a free, two-week subscription to the channel. Information about this special offer is available by clicking the link below. After the free trial period, 15 percent of the $9.95 monthly subscription fee will be donated to Susan G. Komen to help further our mission of saving lives and ending breast cancer forever.

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Komen St. Louis’ 2015 Survivor of the Year: Lillie Thomas

Breast cancer survivors comprise the largest group of cancer survivors in the U.S. We know every life counts in the battle against breast cancer. It was our pleasure to recognize one particular breast cancer survivor at our 6th Annual Power of the Promise luncheon.

2015 Komen St. Louis Survivor of the Year Lillie Thomas with Komen St. Louis Executive Director Helen Chesnut

2015 Komen St. Louis Survivor of the Year Lillie Thomas with Komen St. Louis Executive Director Helen Chesnut

Lillie Thomas’ original involvement with Komen St. Louis was as a member of an organization that received a Komen St. Louis community grant. It was through this connection that she saw firsthand the ways in which Komen St. Louis funding helps women in need.

From then on, Lillie has served Komen St. Louis as a devoted volunteer. She has led our grants committee and most recently represented our mission at the Komen Advocacy Summit in Washington, DC. In our nation’s capital, Lillie and hundreds of other passionate breast cancer advocates shared with our nation’s leaders the value of cancer screening programs.

Lillie is an 18-year breast cancer survivor who has committed herself to making a difference every step of the way. She embodies the mission of Komen St. Louis. It is an honor to fight breast cancer with her at our side.

Congratulations, Lillie, on your recognition as Komen St. Louis’ 2015 Survivor of the Year!