At the Crossroads of Cancer Prevention and A Life-Changing Decision
There are moments in life when we are faced with life changing decisions. One of those moments faces every woman when detected with the BRCA gene mutation, which means chances for having Breast Cancer or Ovarian Cancer is extremely high. A woman will find herself at the crossroads of weighing all of her options, especially the option to have a preventative surgery, such as a mastectomy (removal of the breast tissues) or bilateral salpingo-oophorectomy (removal of the ovaries and fallopian tubes), which will help to prevent Breast and Ovarian Cancer. With the increased knowledge of cancer risks, there is now power to intervene.
As you can imagine, I want to be respectful and sensitive, as I am a merely a messenger. However, I am a passionate one that wants to bring the conversation about women's health to the forefront. I'm not in the comfort of your home or sitting with you face to face over coffee; I am only words on a page, but I have a mission through awareness and education to bring light and hope in the midst of a deadly disease with help from Dr. Deborah Lindner, the Chief Medical Officer at Bright Pink. Dr. Lindner has worked with physicians, educators, and patients to support and inform women about cancer research and prevention.
We invited Dr. Deborah Lindner (whom we shall call Deborah for the remainder of this piece) to speak to our readers because of the recent news of Angelina Jolie, who revealed in the NYTimes that she underwent a second preventative surgery to remove her ovaries and fallopian tubes. As you may remember, Jolie had a double mastectomy due to a blood test that revealed that she carried a mutation in the BRCA gene. This gave her a “87% risk of breast cancer and 50% risk of ovarian cancer.” What you may not have known was that three women in her family died from cancer, including her Mother. She chose preventative surgery to save her life, or to at least be able to say that she did not lose a battle to Breast or Ovarian Cancer.
Like Angelina Jolie, Deborah underwent the same surgeries beginning with her mastectomy 8 years ago. She is here today to take you through her journey, as well as help pass along information to friends and family members that may one day face this very same personal decision.
Remember, it's through conversations like this that change can arise, and this article is meant to help you start a conversation with yourself, your family members, friends, and to even offer support to others because what we're talking about here is cancer.
DEBORAH'S STORY - A STORY SHARED BY MANY
At 33 years old, Deborah discovered she was at risk for breast and ovarian cancer, which was before she was married or had any children. She knew she had a family history, as her Mother was diagnosed with breast cancer while she was in high school, and her Mother’s Mother diagnosed with ovarian cancer.
She never fully understood the gravity of the situation until she was in her residency at Northwestern University in Chicago. Deborah, a board certified OBGYN, was rotating through Northwestern’s Ovarian Cancer Early Detection Program during her fourth year residency and discovered that many of her patients had a similar family history to hers. So, she called her Mother to find out more. It turned out that within the last several generations on her Mother’s side, there were 26 cases of breast and ovarian cancer, which included two cousins being diagnosed with both cancers by the age of 40 years old. Deborah had genetic testing done, which led to the discovery that she had the BRCA1 gene mutation.
THE BRCA GENE MUTATION
As Deborah explains, the BRCA gene mutation is in a class of genes called tumor suppressors. As the cells divide and make copies of themselves, there is room for error. When an error takes place in cell division, there are tumor suppressor genes that can repair this error. If you don’t have the repair mechanism in place, your DNA is replicated improperly. Those improper changes in your DNA could lead to cancer.
Not too long after, she found herself in an interesting position. As an OBGYN at a major academic medical center, she had access to all of the information with the latest treatments for breast and ovarian cancer. She spent a year researching her options, and after searching through literature and even soul-searching, she came to the conclusion that she did not want to wait to be diagnosed with cancer. By that time, her Mother and her Grandmother had already been diagnosed with cancer and didn’t have the luxury of knowing about their risk in advance. She watched them go through surgery, chemotherapy, and all the things that come with chemotherapy. Unfortunately, it wasn't just about hair loss, as she saw changes in their bodies and witnessed their ongoing fear that every cancer survivor experiences, as they constantly wonder if it will come back.
During that time, she remembers waiting in the Doctor’s office for her first MRI, and she realized that she didn't have time for chemotherapy or to find a wig. She needed to finish her residency. It was in that moment, that she decided she never wanted to be in that position. She decided that she wanted to be proactive in reducing the risk of getting cancer. In her final year of residency (at 33 years old), she had a mastectomy, which removed all of her breast tissue. She went through the surgery without any problems. It was a very emotional surgery and painful recovery, but she never looked back.
"I wanted to be proactive in reducing the risk of getting cancer. I wanted to be an advocate for my own health"
ON BECOMING AN ADVOCATE FOR HER HEALTH AND DISCOVERING WHO SHE REALLY WAS
The overarching theme of her story is that she doesn't feel like a victim of a disease onset, but rather, she feels like an advocate for her own health. To her, early detection was the gift of knowledge so that she could understand her risks and be able to take preventative steps -- something her Mother and grandmother did not have. She also looked at her situation as being a gift because she was able to find out who she really was.
She told the story of how she was dating someone, and during her surgery, her boyfriend had cheated on her (Ladies, I know). However, she still referred to her situation as a gift, as it was a testament to who her boyfriend was, and the way he handled adversity.
In 2007, her situation (or her gift), became the front page story of the Sunday NY Times. Author Amy Harmon covered Deborah’s story for six months throughout her journey of her decision-making process and family dynamics. Amy even won a Pulitzer Prize for Deborah’s story. Deborah says she looks back and remembers how she had to gather such strength at such a young age, when usually women experience this in their 40’s or 50’s.
After the story was published, and Deborah had recovered from her surgery, she dated another guy, who she gave the Sunday NY Times article to on the third date to inform him of her story. She casually said to him, “Here it is; read it if you want, no pressure, but tell me what you think about it.” Three hours after the date ended and Deborah went back to work that same evening, he texted her and said “I read the article, and I think you're the coolest person I’ve ever met. I can't wait to see you again.” This gift brought her a wonderful, supportive husband.
BRIGHT PINK - HELPING WOMEN BECOME INFORMED AND EMPOWERED
This gift that Deborah refers to also led her to meeting Lindsay Avner, who had just founded Bright Pink, an organization that is “on a mission to save women’s lives from breast and ovarian cancer by empowering them to be proactive at a young age.” Deborah and Lindsay instantly became kindred spirits, as they shared the same ideas when it came to gene mutation. They also shared the belief that women shouldn't feel like victims, but they should feel empowered. Since their introduction in 2007, Deborah became one of the founding Board Members of Bright Pink, which resulted in her contributing to the programming at Bright Pink and writing a lot of their medical literature. Most recently, she became their Chief Medical Officer. Today, she is currently working on rolling out a program that will help educate and support women as they go through their medical decision-making process. The program has a two-pronged approach: (1) Educating the public to know their cancer risks and to identify their risk level. (2) Educating healthcare professionals about how to manage women’s breast and ovarian cancer risk.
When facing health issues "Women shouldn't feel like victims, they should feel empowered"
To help bridge the deficit in knowledge among healthcare professionals, Deborah created a workshop to deliver a lecture to OBGYN and primary care residencies, as well as practitioners and PAs. This workshop became a model to help them stratify patients into different risk groups, and then teach them how to treat them appropriately.
On a much larger scale, they rolled out the Assess Your Risk digital tool, which allows any woman to go online and guide them through the process by asking them questions regarding lifestyle factors and family history. This tool is meant to help women discover if there is an elevated risk to cancer, and if they should talk to a Doctor for more information.
A SECOND SURGERY AND FACED WITH ANOTHER LIFE-CHANGING DECISION
Going back to Deborah’s personal story, while she had a mastectomy done, the medical community was recommending that women with the gene mutation that are over the age of 35 years old and done with childbearing should have the bilateral salpingo-oophorectomy, which removes the ovaries and the fallopian tubes. They recommend this because ovarian cancer is incredibly deadly and hard to detect early, so they want to do what's best to prevent it. In light of all this, Deborah would have to consider removing her ovaries, again before she was married or had any children. But referring back to this gift (or we can say the gift that keeps on giving): Deborah met her husband at 36 years old, got married at 37 years old, and had her first baby at 38 years old with a second baby at 39 years old. Just before 40 years old, she had the bilateral salpingo-oophorectomy surgery. At this point during the interview, I had to stop and cheer for Deborah.
Deborah realized how fortunate she was to be able to have children, and she truly does feel for women who are at the crossroads of prevention and thinking of having children. Deborah does reveal (just like Angelina Jolie), it's a life changing surgery with the loss of the ability to have children. Deborah also recognized that just like Angelina Jolie, the surgery resulted in forced menopause. With menopause comes the terrifying idea of night sweats, hot flashes, loss of libido, changes in skin, thinning of the hair, and all of those other things people worry about with natural menopause. For Deborah, she was just 40 years old and too early to experience menopause (which naturally comes at 50). Thankfully, she did not feel the effects of menopause, but she does attribute that to taking hormones. When the ovaries are removed, you lose hormones, so it's important to replace them. She said she will choose to go off hormones at 50 and go through this process just like everyone else.
AT THE CROSSROADS - CANCER PREVENTION AND BEARING CHILDREN
So, we know how fortunate Deborah is in her case, but I had to ask her: “What about the women who have decided to get detected early, only to find out they have the gene mutation before they are married, before their childbearing years are over? These women have to weigh the risk of getting a deadly cancer versus not living the life they dreamed of -- how daunting and scary that would be!” Deborah paused, and I understood, what a difficult question to answer, but she responded graciously. Deborah said, “That was my situation. And I did what I needed to do to protect my health and later to protect my life for my children. This whole topic is weighty, and there are so many aspects to it with so many decisions to be made. Do I keep my breasts? Do I remove them? Do I keep them, but keep screening forever? Do I keep my ovaries or not? Do I do fertility treatments, or freeze my eggs? There is so much to process and work through, and it takes time to do all of those things.”
THE IMPORTANCE OF EARLY DETECTION
She encourages women to not delay finding out because in the case that someone does have the gene mutation, they need proper time to process, to figure out the decision, and ultimately, have time to thoughtfully consider on what to do instead of jumping at the first thought. However, Deborah doesn't believe in burdening young girls with this information or genetics testing them for adult onset diseases. She doesn't recommend testing anyone prior to age of 18, but it depends on the individual. However, she does recommend that someone gets tested in their 20’s, so they can start evaluating their options and start planning. She says if you wait until 25 or 30, then someone might miss out on the early detection screening, which at that point may be too late for recommendations.
The fact that some women dream of having children but find themselves at the crossroads of a major medical decision is definitely a tough one for Deborah to answer, as I'm sure she has to consider what she says carefully -- it's real life, but she says “you can't rush life, nor should anyone rush into a marriage or have children with the wrong person based on genetic makeup. At the same time, we don't have forever, and there are limits to our fertility, even in situations where there is no BRCA gene to contend with. All in all, this just adds another layer to a difficult decision making process. But I have seen many women who didn’t feel rushed to face their fertility decisions (because they didn’t have a genetic mutation to make them think about it) who ended up not being able to have children because they didn’t start trying until their 40’s. This mutation may force women to think about planning a family sooner, which could ensure they are actually able to do it at all.”
KNOWING YOUR OPTIONS
Deborah also says we are in an age where there are many genetic fertility treatments, such as options like egg freezing, embryo freezing, and even the ability to detect genetic mutation in their embryo’s, called preimplantation genetic diagnosis. To this point, she stresses it comes down to a personal decision. However, this decision (while made alone), needs the support of friends and family. We all know those heavy and weighty decisions can invite other’s opinions, or on the flip side, scare friends and family away. Deborah, as one who went through the surgery and has been through this tough decision making herself, really stresses the fact that for those going through it need people to listen and not be afraid to talk about it. For the person going through that decision-making process, there are so many thoughts and things to process, and they need someone willing to process the fears and to be a soundboard. She also recommends for someone going through this decision to talk to guys too. Ask them about how this makes them feel and ask what scares them. At the end of the day, no matter what any medical professional tells you, we have to realize that the individual directly affected needs to decide what’s best for them. To whatever degree, family can be supportive, but it's also equally important not to criticize someone’s personal decision.
THE TRUTH ABOUT BREAST AND OVARIAN PREVENTATIVE SURGERIES
Beyond the early detection testing, the researching, the emotional decision making, and dealing with family dynamics, there is the actual surgery itself. As someone who had both of the preventative surgeries, Deborah found the surgeries to be so unique, as you can remove an organ to prevent cancer. The mastectomy requires a 6-week recovery time and is very painful. There are potential complications, as with any other surgery, however, it doesn't have the hormonal side effects that come with oophorectomy. You can even have a reconstruction done to have normal looking breasts again, but you will see scars. For the ovary and tube removal, which can be done laparoscopically, it is a simple surgery (like having your tubes tied). It is a very quick and easy surgery that has minimal recovery time. For example, Deborah went back to work after one week, but she recommends her patients take two weeks off. However, one may have side effects, such as changes with hormones and may have a harder time getting to the right balance of hormones.
Another factor to consider is the cost of surgery. Deborah said most states and most insurances cover someone undergoing the mastectomy and reconstruction procedures. Unfortunately and occasionally, there are loopholes with private insurers but these surgeries are considered standard of care within the medical community, so most insurances will cover both procedures. “The Affordable Care Act doesn’t require health insurance plans to offer mastectomy coverage. However, any plans that do offer such coverage must also continue to offer coverage for breast reconstruction surgery under the Women's Health and Cancer Rights Act.” 
CHANGING THE CONVERSATION IN THE MEDIA
Beyond Deborah’s personal journey, she is also fascinated by how much has changed within a decade regarding public opinion and education. When her New York Times article came out, so many people were thankful for her story, and she even received thousands of letters. However, she received negative criticism online and in national television broadcasts, where people would ask why would someone cut off her body parts. One comedian actually asked why she hadn’t “had her brain removed, since she clearly wasn’t using it”. Yes, we can all agree this is incredibly insensitive, but to Deborah, it just demonstrated how little people knew about it at the time and how unsure they were of how to handle it. In 2015, there's an overwhelming response to Angelina Jolie’s story, as people are saying she’s an advocate for her health.
It is fascinating to Deborah how we still perceive things differently based on our own personal biases. For example, when Angelina Jolie’s story came out, she saw an intelligent woman who had all the medical advice in the world and decided to reduce risk for cancer. Interestingly enough, a friend of Deborah’s had a very different conclusion. She took the line in the article that said, “women can choose alternative medicine.” So, what really drives this home is that it comes down to a personal decision. Even in the medical community, we need to be cautious about how we talk and write about it because while we recommend surgery, we have to know that it may not be the right choice for everyone.
All in all, Deborah feels privileged to have gone through this, even though she received criticism. She continues to see it as a gift - a gift that keeps on giving because now she is part of driving the conversation to help people understand, as they make this kind of medical decision. She hopes that it will open up our eyes to also know that medical decision-making can be cloudy and is not perfect, but it is a personal decision, which should not be criticized.
HOW TO INVITE FRIENDS AND FAMILY INTO THE CONVERSATION
Lastly, I asked Deborah how we can invite family and friends into this conversation despite barriers, such as fear. Deborah recommends talking about family history, even at the dinner table. She says it is extremely important to find out about your grandparents, aunts, and uncles, especially if they have any history of cancer or even heart disease. She said sometimes it’s as easy as taking something in the news (like Angelina Jolie's story) and saying, “Hey, I just read this article and realized that I don't know anything about her family - do you know?”
ADVICE ON HOW YOU CAN ADVOCATE FOR YOUR OWN HEALTH
She also recommends using the Bright Pink Assess Your Risk tool because it does ask you questions about your family history, so maybe you need to go Mom, Dad, or other members of the family to find out more.
In conclusion, no matter what risk level you are and maybe one doesn't need genetic testing, we can still make lifestyle changes to reduce the risk of cancer. Start by eating right, maintaining a healthy weight, eating a low fat diet, and reducing the amount of alcohol we drink. Deborah stresses that even without a family history of cancer, 1 in 8 women will develop breast cancer at some point in their lives. However, even with all of the information available, so many people choose to put their head in the sand or don’t have enough information, to avoid the trap of choosing to delay early detection because they're afraid. To that, Deborah says:
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“Knowledge is power, and if you don't know the risks, then you won't know how to intervene.”
FROM THE EDITOR
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