In honor of Black History Month: Meet Natasha Simms

African American women are more likely to die of breast cancer than any other race and the Delaware Breast Cancer Coalition does not like this statistic!!! This February in honor of Black History Month, the Delaware Breast Cancer Coalition is running a special “Planting the S.E.E.D. to Health and History” campaign. Visit our website to download a free Family Health History Tree and learn about your family health history and risk factors that may affect you. As a special part of the campaign, we’d like to introduce you to some local African American Breast Cancer survivors throughout the month to share their stories. Without further ado, meet Natasha Simms. She is a breast cancer survivor and friend of DBCC filled with an inspirational message of hope, courage, wisdom, and survivorship in the excerpt below.

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Natasha Simms was 31 years old when she was diagnosed with breast cancer. Natasha began screening for breast cancer at a young age, because her twin sister Lynette (featured last week on the blog) was diagnosed just a short while before her. She had a clean mammogram in August 2012 and in September, Natasha felt a lump. Her sister, Lynette, urged her to visit the doctor.

Natasha’s doctor did a biopsy and it came back as breast cancer. She also found out she was BRCA1 positive. She had 3 small tumors and the doctor recommended a mastectomy as the first step. The surgery was scheduled for December. Within that time the tumor had grown 10 times its size and spread to her lymph nodes. So the date of her surgery, Natasha was told she needed emergency chemotherapy. After the second chemotherapy treatment her tumor shrunk back down to its original size and after three more treatments she did the surgery. It was a grueling 8 hours – a bilateral mastectomy with reconstruction and 17 lymph nodes removed. Recovery was tough. Besides her eyebrows, she lost all her hair and her palms and fingers were black. She had four more rounds of chemotherapy and had some blood transfusions in between. 28 rounds of radiation later, Natasha was declared cancer free.

Because she was young, Natasha was told her cancer was more aggressive. That is why her tumors grew so quickly. But she was also told the treatment worked very well because she was her body was strong to fight back.

Natasha says watching her sister go through cancer made her stronger on her journey. She wasn’t scared of dying because she saw her sister survive and thrive. She says her biggest concerns were shallow thoughts like, “I’m young, I don’t have any breasts, I don’t have any hair, I don’t have a husband”, and wondering why it happened to her. But after her cancer, Natasha says the beauty inside her came out. She didn’t fall back on her physical looks. She appreciated the parts of her body that were functioning and supporting her, like her legs for helping her walk, and her eyes for helping her see.

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On the day of her diagnosis, Natasha recalls a rainbow in the sky. Her sister Lynette told her that was God’s promise that she wasn’t going to die from the cancer. Natasha gained strength and encouragement like this from her sister throughout her journey. She also found comfort in being able to call someone like Lois at the Delaware Breast Cancer Coalition and talk about what she was going through and all the challenges in her life.

Natasha (and Lynette) are the only ones from a family of 12 to have breast cancer. But Natasha says she had a grandmother that died of ovarian cancer and an uncle who died of prostate cancer. So she has urged her cousins to get their genetic testing. Natasha has 4 children and once they are 18 they will go through genetic testing. Her family and her children are at a higher risk of developing breast cancer due to their family history.

There are still after effects of the cancer that Natasha faces all the time but overall, she feels fortunate that her health is fine. After speaking to her doctor she had a complete hysterectomy to reduce her risk of developing ovarian cancer. And because the genetic make up of her cancer she cannot take any estrogen hormone replacements. So she is reading, learning techniques and managing the best she can. She has started to meditate, write books, and hosts a radio and online web show to talk about issues.

For someone who might be newly diagnosed and reading Natasha’s story, she has some words of wisdom, “Life is not over when you are diagnosed with breast cancer. This is just a test to show how strong you really are. Pull your strength from this. Be positive. Keep a smile.”

For any African American women reading this during black history month, Natasha has a special message. In general, we don’t like to go to the doctors. Doctors always have bad news. But you need to be familiar with how your body feels and if anything doesn’t feel right – go to the doctor. And most importantly, listen to the doctor. It might just save your life.”

 

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In honor of Black History Month: Meet Lynette Shannon

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African American women are more likely to die of breast cancer than any other race and the Delaware Breast Cancer Coalition does not like this statistic!!! This February in honor of Black History Month, the Delaware Breast Cancer Coalition is running a special “Planting the S.E.E.D. to Health and History” campaign. Visit our website to download a free Family Health History Tree and learn about your family health history and risk factors that may affect you. As a special part of the campaign, we’d like to introduce you to some local African American Breast Cancer survivors throughout the month to share their stories. Without further ado, meet Lynette Shannon. She is a breast cancer survivor and friend of DBCC filled with an inspirational message of hope, courage, wisdom, and survivorship in the Q&A below.

Question: Tell me a little bit about your breast cancer diagnosis and treatment. What was the most difficult for you?

Answer: Well at the age 27 my son had just turned 2 and I had just celebrated my 2 yr wedding anniversary. I could remember one day feeling a lump in my under arm and then feeling pain in my right breast. I visited my family doctor who then told me he would have to send me for a mammogram the same day. I was then scheduled for a specialist the same day. Next came the biopsy. I remember sitting in the doctors office with my husband being told I had breast cancer. It was a huge shock. I had a tumor about 4 cm in dimension. I also had 16 affected lymph nodes in my under arm.  

The most difficult part….. Everything! Not being able to care for my son, loss in appetite, restlessness, having to convince people that I was going to be okay and not die. Not to mention the fact that the very medicine that was supposed to save my life….. I was allergic to it. So before every treatment I had to take a dose of bendryl. I had 6 treatments in total. Broken in half because my tumor shrunk so fast that the doctor needed proof that I actually had a tumor. After the 6 treatments every 2 weeks I had 30 days of radiation. 

Question: How did you get through all the tough issues that come from a diagnosis?

Answer: I honestly got through the tough times with the help of God. For no other reason would I be here today with a testimony of healing.

Question: Did you turn to family for support?

Answer: My husband was my biggest supporter along with my family, church family, friends and co workers.

Question: Did the DBCC help you? Or did you have an outside support system like a church or sorority or friends or coworkers who you counted on?

Answer: The DBCC helped me out a lot. They were always ready to have someone talked to me if I had any questions or just needed someone to talk to. Everyone was always there to cheer me on and encourage me every step of the way. 

Question: Did breast cancer run in your family? I know your sister is also a survivor. Did you guys speak about your risk factors before being diagnosed – or do you do so now – especially for the future generations?

Answer: My breast cancer was genetic. I thank God for my plastic surgeon who suggested that I get genetics testing before getting reconstruction. It is at that point I found out it was genetic. At that point I only knew that my grandmother died of ovarian cancer. I was then able to get my second breast removed and help reduce the chance of it coming back.  From that I was able to tell my sister and all relatives that it was genetic. I begged my sister to get testing, unfortunately  that didn’t happen and before long she was diagnosed. 

Question: What advice would you give to a black woman who has just been diagnosed with breast cancer? Is there anything you wish you knew before that might have helped you along your journey?

Answer: The advice that I would give is don’t give up! Your story does not end with a diagnosis. Have Faith. A doctor once told me that it is really mind over matter. Don’t allow your mind and the things people may say dictate how you heal and survive. You can make it. Go get genetics testing, find out if it runs in your family, there is preventative work that can be done.  The one thing I wish I knew, was to get genetics testing before I had my surgeries.

Question: How are you today?

Answer: I feel amazing and grateful that God would heal me and continue to add years to my life. I’m also grateful for my support group that still encourages me and celebrates my life.  I have so many reminders of what I went through physically that keeps me humble and helps me to remember that I need to share my story and information with others.

 

 

 

It’s Complicated: Our Relationship with Food

By Renee Pieroth, RD, CSO, LDN and Lauren Clanet, RD, LDN

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As Valentine’s Day approaches, how is your relationship with food?

Overeating

Try mindful eating. When eating slowly, we give our bodies time to recognize when we are full.  Try resting your fork/spoon on your plate between each bite or holding your utensil with your opposite hand.  These simple yet effective tips force us to focus on the meal itself, not the amount of food being consumed.

Busy Schedule

Consider planning and preparing a week’s worth of meals on one day.  By preparing your meals in advance, you save yourself additional time at the end of each workday. There is no need to stop at a fast food restaurant on the way home from work because you know your homemade, nutritious meal is already waiting for you at home.

Skipping Meals

Carry balanced, healthy snacks with you to overcome missing a meal. We tend to overeat later in the day if we skip a meal, which can also slow down our metabolism and lead to weight gain. Consider snacking on mixed nuts, an apple with peanut butter or a granola bar.

Fad Diets

Do what is best for you. Following an [organic/gluten-free/lactose-free/low-fat/insert-other-diet-name-here] is not appropriate for everyone. If you’re considering a change, contact your personal doctor or dietitian to discuss if a diet is necessary and which one may be best for you and your needs.

 

In general, try thinking about food in terms of nutritional benefits. Food is life, so choose food that soothes your mind, body and soul. Focus on moderation and balance, as opposed to what you “shouldn’t eat.”

Love your body.  Love yourself.  Love your relationship with food.

Personalized Medicine… The future is here for Judy!

We have all heard that personalized medicine is the future of cancer treatment. Fortunately for some, the future is here now! At the National Breast Cancer Coalition Project LEAD conference last summer, a staff member from the Delaware Breast Cancer Coalition met Judy Anderson, a stage 4 breast cancer survivor from Florida. Judy’s incredible story of breast cancer diagnosis, recurrence, treatment, and her experience in a clinical trial is told below. We are amazed that the future of breast cancer treatment is here and Judy has experienced it! We wish her a cancer-free future filled with much happiness!

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Pictured: Judy at the National Breast Cancer Coalition Project Lead conference in San Diego last July 2015.

While President Obama and Vice President Biden are beginning work on a new initiative in the fight against cancer, a Port St. Lucie woman has just returned from the front lines in the battle to cure cancer with some hopeful newsJudy Perkins Anderson has had Stage 4 breast cancer since August, 2013.  She was originally diagnosed with breast cancer in 2003 and had a mastectomy.  Since she became metastatic, in the last 2-1/2 years, she has been through numerous treatments including several different hormonal therapies, chemotherapies and targeted therapies.  Last summer, with treatment options running out, she found out about a clinical trial at the National Institutes of Health (NIH) in Bethesda, MD.  The trial, “Immunotherapy Using Tumor Infiltrating Lymphocytes for Patients with Metastatic Cancer”, builds on existing immunotherapy that has already shown success with melanoma patients.  This trial expands the patient population to include people with other cancers with solid metastatic tumors.

The theory behind this treatment is that part of our immune system is still trying to fight the cancer.  However, most of our immune system no longer recognizes the cancer as an enemy and is no longer trying to attack it.  Tumor infiltrating lymphocytes (TIL) are white blood cells (WBCs) that have penetrated the tumor and are trying to fight the cancer.  They are a small minority of the WBCs in our bodies and do not have sufficient numbers to effectively fight the cancer.

In Mrs. Anderson’s case, she had a tumor removed in August, 2015 to potentially develop her treatment.  Her tumor was cut into 24 pieces and the TIL were watched to see if any of them would attack the cancer.  In four of the 24 pieces, activity was seen.  Subsequently, the active TIL from these four tumor pieces were grown up into an army of about 80 billion T-cells focused only on killing her cancer.  This “selective TIL treatment” was ready for Mrs. Anderson just before Christmas in December, 2015.

Prior to receiving her “TIL army” as Mrs. Anderson calls it, she was given high dose chemotherapy that killed all the other WBCs in her system.  This way, when the selective TIL treatment was infused, the only target was the cancer cells.  With time, her bone marrow will regenerate the other WBCs which are an integral part of our normal immunity that fights infections and disease.

Mrs. Anderson returned home on New Year’s Day 2016 and has been recovering from the TIL treatment which can be, in her words, “a grueling affair”.  Amazingly, she reports that more than half a dozen tumors that she could feel in her chest have “melted away”.  She has stopped all pain medications that she had been taking to control the pain from the cancer.  Her doctors at NIH are already very optimistic saying that such a rapid response is unusual.  Mrs. Anderson will get scans in early February that will confirm what she already knows, that she is heading for a remission.  How long it will last, remains to be seen.  But, for other patients that have responded, sometimes the remissions have lasted a long time.  Until there is evidence to the contrary, Mrs. Anderson is resuming life without cancer and beginning once again to plan for the future.

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Pictured: the Olive study group at Project Lead in July 2015. Judy is on the right, standing next to DBCC staff member, Beth Krallis.

What do you think after reading about Judy’s experience? What questions do you have about TIL treatment and cancer fighting of the future? What do you wish you knew earlier or want to know now about clinical trials?

If you would like to find out more about participating in a clinic trial or becoming involved with the Delaware Breast Cancer Coalition’s Clinical Trials Mentoring Initiative, please contact Beth. Researchers and the medical community recognize the need for trained advocates and their support role to the clinical trials process. Without participants, research outcomes are limited.

If you want to learn more about the science of breast cancer and Project LEAD, please visit the National Breast Cancer Coalition website.

 

Progress Is Great But More Is Needed!!!!

We were happy to recently read a press release from the American Cancer Society that tells us the death rate from cancer in the US has declined steadily over the past 2 decades. The cancer death rate for men and women combined fell 23% from its peak in 1991 to 2012, the most recent year for which data is available, translating to more than 1.7 million deaths averted during this time period. Read the details here.

Still, we know a total of 1,685,210 new cancer cases and 595,690 deaths from cancer are projected to occur in the US in 2016 and many of them will be due to breast cancer. During the most recent 4 years for which there are data (2009-2012), the rate of new cancer diagnoses decreased by 3.1% per year in men and stayed about the same in women.

We need to do more. Too many people (and especially women) we love are dying of cancer, and specifically breast cancer. If we continue to affect death rates this slowly (23% over 2 decades!) we will keep losing those we love to cancer.

For more information on this subject matter, please check out the National Breast Cancer Coalition‘s plan to know how to end breast cancer by January 1, 2020. Find out more about the deadline, which we support, by clicking here. We are committed. Are you with us?

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Survivor Spotlight: Lori Holveck

Lori Holveck was first diagnosed with breast cancer 3 years ago, at the age of 31. Her daughter was 3 years old and her son was 6 months. She had a double mastectomy, 6 rounds of chemotherapy, and 31 treatments of chest wall radiation. However in August 2015, Lori was diagnosed with a recurrence of breast cancer that had metastasized to her liver, lungs, bones, and brain. She will be on chemotherapy for the rest of her life. But Lori is a fighter and she doesn’t let this bring her or her family down.

Lori is fortunate to have a wonderful network of family members, friends, and coworkers who provide her with love and care. But she also relies on the support of the Delaware Breast Cancer Coalition. A phone call from a Delaware Breast Cancer Coalition survivorship staff member, the guidance of a Peer Mentor, or the comradery that comes from a Young Survivor in Action program, all help Lori to know that she’s not alone.

Lori is one special lady and we are lucky to know her. DBCC is proud to call Lori a friend and feature her in the survivor spotlight for sharing her story with others!

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Photo Credit: Montgomery/Ford Photography

Survivor Spotlight: Lisa Welling

Breast cancer survivor Lisa Welling celebrated her last Chemo treatment at Beebe Tunnell’s Cancer Center on October 23. She and her son just took a much deserved vacation to North Carolina to celebrate being cancer free!

Like hundreds of other women in Delaware who will be newly diagnosed this year, Lisa knows breast cancer isn’t easy. You don’t just bounce back. She was under the assumption that she’d have a double mastectomy and be back to work in a month. That was not the case. She was and still is in a lot of pain.

Now Lisa is ready to give back. Her advise to others, “ask for help”. There are a lot of unknowns when it comes to cancer. And a lot of other women have been through this experience before. Lisa wants women to know there is a light at the end of the tunnel. And as Lisa says, “life is good”. DBCC is proud to honor Lisa in the Survivor Spotlight!

If you or someone you know has been diagnosed with breast cancer, the Delaware Breast Cancer Cancer can help. Call us at 302-778-1102 to speak to a peer mentor, get involved in a survivorship program, and learn how we can be a resource to you and your loved ones.
Lisa Wellington