Today's Woman October 2015 Breast Cancer Supplement

2015 BREAST CANCER SUPPLEMENT BREAST CANCER SUPPLEMENT

— Advice from Breast Cancer Survivor Georgianna Dotson

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REMOVING THE POSSIBILITY Story by Carrie Vittitoe • Photos by MELISSA DONALD

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auren Luckett spent 20 years watching her mother, Barbara Baumgardner, battle breast cancer. She was 6 years old when her mother was first diagnosed at age 34. Lauren recalls her mom enduring surgeries and chemotherapy and remembers going wig shopping with her, but says it didn’t seem weird or unusual to her younger self. “It was my normal for a long time,” she says.

As a teenager, Lauren learned about breast cancer in a health class, and the realization of her mother’s diagnosis and its seriousness hit her hard. It was the first time she understood that cancer could kill her mom.

Over the course of two decades, Barbara had two mastectomies and many, many radiation and

metastasized to her liver and lungs. Through all of it, Lauren says, “My mom never, ever, ever complained.”

Barbara was, by far, the youngest person in her family to develop breast cancer, but her diagnosis was one in a string of many, including her mother and sister. As part of her treatment, Barbara underwent genetic counseling and tested positive for BRCA2, the gene associated with familial breast and ovarian cancers.

Another breast cancer gene, BRCA1, has received enormous media attention as a result of Angelina Jolie’s positive status and her decision to have a double mastectomy.

BRCA2 was the second gene discovered that is also significantly associated with breast and ovarian cancers, according to Jessica Pack, certified genetic counselor and manager of KentuckyOne Health’s Cancer Care Genetic Counseling Department. “BRCA2 is an autosomal dominant gene, which means it can be passed down from the mother’s or father’s side,” she says. “There is a common misconception that you only get it from the mother. Men can be silent carriers of the gene mutation.”

Pack notes that another misconception is that the genes themselves are the problem. Everyone has these genes, which suppress tumors in the body. Where the problem lies is if a person has a mutation in the BRCA1 or BRCA2 genes.

The mutation makes the gene unable to suppress tumor growth, hence the heightened incidence of cancers. Even men can develop cancers as a result of BRCA2 mutations.

Initially, Barbara didn’t want her daughters to be tested for BRCA2, but she eventually changed her mind. Lauren completed a saliva test in the spring of 2014 and called her mom as soon as she received her own BRCA2-positive result.

“It is terrifying getting that result, seeing what Mom had to go through,” Lauren says. “I feel like I have a cancer cloud looming over my head.” It is especially frightening because Lauren has two young daughters, 7-year-old Gabby and 21-month-old Avaley.

Now, at age 27, Lauren is planning to have a double mastectomy at the end of 2015 or in early 2016. She will be under the care of Dr. Elizabeth Riley, an oncologist with KentuckyOne Health, who was also Barbara’s oncologist. Lauren regularly took her mother to office visits with Dr. Riley and established a relationship of trust.

At age 27, Lauren is planning to have a double mastectomy

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LAUREN IS WEARING: Nightgown, $68, Robe, $72, Sweater, $199, Earrings, $48, all available at Dillard’s, 5000 Shelbyville Rd., 502.893.4400

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Type Illustration for cover and throughout magazine by BRIGID MORRISSEY

chemotherapy treatments. In 2013, though, her fourth cancer diagnosis was stage four. The cancer was aggressive and

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One of the most difficult aspects of facing surgery is not having her mother with her. Barbara passed away on January 22, 2015. Although they knew with her advanced diagnosis she had less than five years to live, they didn’t expect her death so soon. Barbara began to feel poorly soon after the new year, but in anticipation of Avaley’s first birthday, she was well enough to go shopping the Saturday before she died. By Tuesday, she was jaundiced and in terrible pain. Avaley turned 1 year old the day after her grandmother was buried.

As the months pass and surgery approaches, Lauren says, “I really wanted her to be here for this.” Even though Lauren’s dad, Dave, stood by his wife for her surgeries and will be there to support his daughter, Lauren says, “You just want your mommy.”

Lauren is concerned with how her husband, Austin, will manage their daughters and three large dogs while she is recovering from surgery, which will take considerable time. The surgery itself will not be a one-step process. A full bilateral mastectomy happens in stages, according to Pack. The first surgery is to remove breast tissue and put in expanders to form a new place for breast implants. The second surgery is reconstructive.

It is the time between the first and second surgeries that concerns Lauren the most. She doesn’t feel sad to see her breasts go since, as she says, “I’m getting them back!” Still, she admits she’s sad to anticipate what her body is going to look like while she waits for the implants to be placed.

And the breast surgeries will not be the end of hospitals for Lauren. Her gynecological oncologist, Dr. Lynn Parker, is urging her to have her fallopian tubes removed in the next two to three years.

The latest research data suggest that ovarian cancer actually begins in the tubes. According to Pack, the current recommendation is that tubes and ovaries be removed by the time a woman is in her late 30s or early 40s.

Her mother’s breast cancer story and her own BRCA2 status have forced Lauren to face issues most women in their late 20s don’t consider until much later in life.

She’s opened email accounts for her daughters and has begun sending them letters and photographs, a record of their life together since the future feels uncertain. “I have been very open with Gabby,” Lauren says. “She knows what was wrong with ‘B’ (Barbara’s nickname).”

Lauren recognizes that even with her preventative surgeries, it is still possible for her to develop cancer, although the likelihood is small. “Everything that could go wrong did for my mom,” she says. “I wonder, ‘Even if I get the surgeries, will it make a difference in the long run?’”

Her grief over losing her mom to cancer and her own health concerns have led Lauren to find meaning and joy in unexpected ways. In an effort to celebrate Barbara, Lauren says, “The girls and I have ice cream on the 22nd of every month.”

She wears a necklace that her dad had made for her using half of his wedding ring (her sister has the other half). It has a Pandora bee charm attached in honor of B, as well as a pearl to commemorate his 30-year marriage to Barbara.

Lauren says talking about her BRCA2 status publicly and about genetic counseling is part of continuing her mother’s legacy. She takes any opportunity to share information not only about her mom, but the importance of being screened. “I want to make her proud of me,” she says.

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FROM THE WAITING ROOM:

WHAT TO SAY AND NOT SAY TO SOMEONE WITH A CANCER DIAGNOSIS

By A CANCER SURVIVOR

Last year, I shared 25 days with four women in a 8 IN radiation treatment waiting area. Our ages ranged from thirty-something to 85. We came from the city, suburbs and rural Indiana and Kentucky. We came with various labels: Caucasian, African American, veteran, nurse, writer, retired, mother, wife, grandmother and caregiver. Our charts 8 IN brain tumor, and included words like soft tissue sarcoma, breast cancer. We arrived nervous and scared, and found comfort in seeing one another every day.

Before this experience, I struggled with what to say to people who faced a cancer journey. Now that I have been through this, I learned some things I will avoid saying and more importantly what to say and do for those facing the journey.

Though I knew people meant well, some things that bugged me and that I’ll try not to say: 1. “You are a fighter. You’ll beat this.” Not me. I’m very much the peaceful, pacifist type. I was too tired and scared to fight after radiation. My waiting room friends agreed — especially the ones who had been through chemo. My mode was to surrender so I could get through it. For others, the warfare analogy works. My cancer mentor used the “got to win the battles to win the war” mantra and another friend was Xena Cancer Warrior Princess. So try to get a reading on the warrior meter before you send a sword.

2. “I just know everything will turn out fine for you.” I know people who said this were trying to be positive, but not one of my docs had said this. Several of us had been misdiagnosed before we got to this, so we were skeptical of any prediction.

At the beginning stage of my journey, there wasn’t anything anyone could say that would erase the “scared out of my wits” feeling. Luckily that faded (as my cancer mentor said it would) once I got going with my treatment program.

3. “ This is God’s plan for you.” This is bad PR for God. Instead we were hoping God was with us. All of us were women of faith and spiritual practice. We accepted that bad stuff does happen to good people, and this was our turn. A couple of us had very specific prayers while we were on “the table” and relied on spiritual sustenance to get through the journey.

4. Don’t “one up” us with a scary story of someone else who had something worse — especially if they are dying or dead. Makes our stomach lurch on the spot. I was held captive in a one-sided conversation as someone recounted the story of her mother’s cancer. Thought I was going to faint before I had a chance to say, “Gotta go, see you later.”

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What to say or do: 1. “I’m with you on this journey. I know you must be scared and I am here for you,” “I am so sorry you are having to go through this,” or “I’m praying for you and thinking about you.” The people who said this to me meant it. Life is messy and we get through it with one another. I felt so lucky to have a “village” taking care me.

2. If you have been through this, then let me know. You are so valuable to me because you “get it” and can coach me along the way. My cancer mentor would send texts or voicemails with “big sister” advice that buoyed me through tough moments. My phone conversations with her helped to put me at ease for the next stage in the process.

3. “ I’m here for you, and here’s how I can help…” This is much better than “Call me if there is anything I can do.”

A church friend sent me a note with her cell number, and said she could do errands and meals. I called her.

She went to the grocery for us and brought a last minute carry-out dinner one night. Bringing a meal, sending a gift card for carry-out, or running an errand means so much and helps out tremendously. So many people did this for us, and I can’t thank them enough.

4. “I need you to tell me what you need.” If you want to do something, but need direction, then let the person know.

5. If you are the organizer type and friend, then lend your service as the communication person for the family. When I first got the diagnosis, a good friend showed up, listened to me, and made a list of what needed to be done. She kept people posted, organized meal sign-ups, rides to radiation, and more. Lifesaver!

6. Send a card, an email or make a phone call to the person. This journey feels very lonely sometimes because we’ve had to withdraw from work, activities, and regular life. Knowing that others still care helps. Hallmark is good. A friend sent a card nearly every week — some were funny, some sentimental, and all were meaningful in letting me know she cared. I saved every card that anyone sent me!

6. Don’t be afraid to ask us how we are doing. One friend taught me a great approach by asking, “How was your day?”

That way if the person wants to talk about “normal” life they can, or if they need to unload about the cancer journey they can.

7. Care for the caregiver. My best friend and sister gave my husband breaks and support at the hospital and home.

When I was home after surgery, friends and family provided “adult supervision” of me so he could exercise or do errands. Caregivers need an escape or change of scenery to recharge.

Whatever someone said to me — even if it was a “don’t say” — I knew the person had good intentions. Bottom line: if you just show up and be there for the person facing a lifethreatening diagnosis (and their caregiver), you don’t have to worry about saying anything at all.

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HERE ARE DEBBIE’S TOP 10 THOUGHTS FOR LIVING STRONG:

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faced more ine-and-aradiation, which half years kept the cancer ago, Debbie at bay until Scoppechio another tumor started her journey was found on with cancer after her spine. “Then finding a lump in it was another her breast. A round of biopsy revealed radiation — the stage 3A breast

BY TORIE TEMPLE cancer, which most recent called for an aggressive treatment of being the end of last year,” she says. chemotherapy and radiation. Then, five “So I had a couple of Christmases years after her first diagnosis, Debbie where I didn’t feel Christmas-like.” got the disheartening news that she Through each devastating had brain cancer. She underwent a diagnosis, Debbie continued to press craniotomy, or the surgical removal on. “They do scans about every six to of a portion of the skull that allows a eight months, and hopefully they will neurosurgeon to find and remove a be clean, but I don’t know yet,” she brain tumor according to the American says. “I will always be living with cancer.

Brain Tumor Association. “I didn’t have I will never be cancer-free, but I am to undergo chemo, but I did some living with cancer with the important radiation after the craniotomy,” word being ‘living.’ I am living and Debbie says. enjoying life.”

Three years after enduring and Though she experiences side recovering from brain surgery, Debbie effects from radiation, Debbie received her third diagnosis of cancer: continues to work half days as the This time, it was her spine. She then executive chairman of Scoppechio, formerly Creative Alliance, an advertising firm she founded in 1987. “I have tremendous support from everyone in the office,” she says. “They give me a lot of energy, and they keep me moving and focused. I also have the support of my husband, who is my strength and soulmate. I am very fortunate to have the health care we have in this city. I have never felt the need to leave the city for treatments.”

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Debbie Scoppechio keeps her positive attitude in her fight with cancer, and gets behind Splat Out Cancer.

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1. C hecking your own breasts is more important than a mammogram.“I had a mammogram six months before I found my lump, and it didn’t show anything. If I wasn’t checking myself, who knows how much longer it would’ve gone. So, I think it is important for women to do their own body checks and not just depend on mammograms.”

2. If you feel a lump, immediately see your doctor.

3. Early diagnosis is the best diagnosis.

4. B e positive about treatments; it will save your life. “Negativity does absolutely nothing to save your life. Being negative isn’t going to help you, your caretakers, or your doctors.

The best thing to do is what the doctors tell you to do and be as positive as you can. Find strength within yourself and look to family to keep you motivated.”

5. S urround yourself with those who truly care about you. You will need all the support you can get. “At Christmas, the office rented a bus and came out to sing me Christmas carols.

They have done phenomenal things to keep me going.”

6. Appreciate your supporters.

7. R emember Gilda’s Club. Gilda’s Club welcomes anyone with cancer — newly diagnosed, survivors, adults, children, and their families. All clubhouse programs are offered at no cost to members and their guests. Visit gildasclublouisville.org or call 502.583.0075.

8. L isten to your body. Check out any concern or unusual pain with your oncologist.

9. Live every day to the fullest.

10. Live ~ Love ~ Laugh

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BREAST CANCER SUPPLEMENT

october 2015

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PHOTO TAKEN OUTSIDE MUHAMMAD ALI CENTER

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PINK W

PINK W MAN sponsored by

PINK W MAN sponsored by

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We celebrate with these Breast Cancer Survivors!

What has breast cancer taught you? “That I have beautiful sisters all ages and from all walks of life. That I am a role model to others who have witnessed my journey. It is important that I remain a positive, but at the same time have an openness. To share my scars — both mentally and physically — with those not only with breast cancer, but anyone who is walking a difficult path.”

— Shauna Tomlin

Special thanks to Muhammad Ali Center for location assistance.

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She told me we were part of a club that we did not choose to be part of, but should make the best of.”

— Carla Heideman

HELPFUL THINGS I WAS TOLD AFTER I GOT BREAST CANCER

“When I was taking chemo and having a difficult time with various side effects — an infection that eventually caused me to lose my implants — one of my doctors said to me, ‘Remember, 8 IN every time I looked in the it’s only temporary.’ I held on to that mirror, barely recognizing the person this disease had took its physical toll on. Within a few short months, my hair was growing back, and I started reconstruction again. And I quickly realized, yes — it’s only temporary.” — Trina Amos

“I was out one day wearing my scarf, bald as a baby’s butt, and a woman came up to me and said, ‘Are you in treatments?’ I said yes, she said, ‘I want to show you there is hope. I did chemo about five years ago and my hair grew back, and I’m okay.’ I really appreciated her coming up to me; it did give me hope.”

— Ellen Jacobs

— Georgianna Dotson

“Dr. Allison Hatmaker said to me, ‘This is a little bump in your road.

Two years from now you will be fine, and this will all have been like a little speed bump.’”

— Nancy Engleman

“Break down your chemo into sections. 1/6–done.

1 /3 –done. 1/2 –done and 3/4-done. It helped me see what I could tolerate.”

— Jeanne Ballard

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“80% of the battle is your attitude and your mental outlook.

Stay positive, stay focused on healing and envision being a healthy strong woman.”

— Barbara Stacey

“They love me — regardless of what my body looks like.”

— Susan Gephart “Just take it one day at a time.

Don’t worry about tomorrow because God is already there.”

— Jessica Hayes

“You are not your breast. You are much more than just that piece — Carolyn Billinger of anatomy!”

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