Finding a Sisterhood at the YSC Summit

Early this year, my life literally changed. I know its cliché, but it’s true. I attended the YSC Summit in Houston, Texas, for three mind-blowing days. I was three years out from my breast cancer diagnosis and really had no connections with other young survivors. That is a very lonely feeling. I knew for me to really connect, I needed to commit to going to the YSC Summit, so I signed up.

I contemplated taking someone along with me, but I knew deep down I wouldn’t force myself to meet other women unless I went alone. I arrived on the first day feeling overwhelmed and anxious about being in a room filled with people I didn’t know. The opening ceremonies definitely put me at ease and I loved how everyone was so upbeat and friendly!

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Leisha and her new sisters at the YSC Summit.

The best thing I did was join in on the BBQ dinner the first evening, and I just happened to find myself at a table with five amazing women. This experience altered the rest of my weekend. Being able to share my story and hear so many other candid women share theirs was humbling. I will forever be grateful to those women (you know who you are) who, with friendly smiles, started a conversation with me.

It’s not all fellowship. There are really smart people at the Summit to inform you, answer your questions and just get you thinking. The sessions were amazing. My absolute favorite was about dating, relationships and sex. Sometimes you need to be reminded that it’s OK. These issues around dating are normal and I think this was a big relief for me. I also enjoyed hearing about other forms of treatment for ER+ breast cancer. It reassured me that I was doing the right things for my diagnosis, and it reminded me to always be my own advocate.

Attending the YSC Summit post treatment was THE best thing I have ever done for myself. I feel like because I was done with treatment when I attended, I had a clear sense of where I was in my journey and that helped me take from the breakout sessions the information that was pertinent to my personal diagnosis and situation.

Another thing that I totally appreciated about YSC is they offered discounts and help to get to the conference. I signed up to do fundraising to attend and did much better than I thought I would. It just takes asking. With the fundraising, I received reimbursement toward travel expenses and I also took advantage of the airline discount codes. Don’t be afraid to fundraise; you could surprise yourself!

My advice to first timers is join in on the fun. Strike up conversation with others around you. They may turn into lifelong friends. Jump in on the icebreakers (as awkward as it may feel at first), go to the group dinners, participate in the group exercise classes and definitely don’t miss out on the last night’s celebration!  Let this be three days when you don’t worry about being judged. This is a time to just be yourself.

My life changed at the Summit. I made the connections that I was missing for three years and it was great to feel  “normal” for a few days. When you are in a room full of women, men, professionals and co-survivors who have lived through and experienced some of the same things and thoughts, it’s honestly a relief! I made some lifelong friends, these women inspired me to ride in YSC Tour de Pink West Coast last month and to start a Face 2 Face network in my area. That’s a life changed for the better!

leisha at TdP

Leisha at the 2015 YSC Tour de Pink West Coast


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The YSC Summit Changed My Life

I was diagnosed in February 2014 with HER2+ breast cancer at the age of 35. After chemo, a mastectomy and radiation therapy, I’m cancer-free! I’m also actively involved in YSC, and it all started when I attended the Summit.

YSC-Summit-LogoThe 2015 YSC Summit changed my life! I first connected with YSC online at the recommendation of a friend. The Newly Diagnosed Navigator I received from YSC was a comforting and useful tool during treatment, so I thought I’d see what the Summit was all about. I attended on a travel grant (I wouldn’t have been able to go otherwise) and I’m so glad I went! I met many sweet new friends who had hope, faith and encouragement to share.

I was so excited to meet Hollye Jacobs!

I was so excited to meet Hollye Jacobs!

The atmosphere was light, open and welcoming throughout the conference. I met Hollye Jacobs, author of The Silver Lining:  A Supportive and Insightful Guide to Breast Cancer. She was the keynote speaker for the closing session of the conference, and it was a privilege to be in her presence and hear about how hope and a positive attitude can make such a difference for survivors.

The other sessions were so informative, and I was impressed with the variety of workshop topics. I particularly enjoyed one session where a doctor spoke openly and answered questions about sex during and after treatment. He made it comfortable to talk about topics about which I would never have asked my own oncologist. I came away from that session empowered with life-changing information that has since helped put my own sex life back on track.

I threw caution to the wind and decided to try belly dancing one evening of the Summit. What a joy it was to try something new in a safe environment of women just like me! The instructor made it so easy, and she opened my mind to a new type of exercise that I never thought I could do.


Posing for a group photo with new friends.

The food at the Summit was fabulous, and they did a great job of catering to my vegan lifestyle. The meals were beautiful and the themes were fun, including line dancing after a Tex-Mex dinner one night.

I didn’t expect to come away from the Summit changed, but I found that YSC’s heartbeat struck a chord with me, and I wanted to get involved. I became a YSC State Leader for South Texas and now I lead a Face 2 Face Support Network in my community. It’s the only breast cancer support group in my town. I’m working with our local hospitals, oncologists and women’s health centers to connect the medical community with YSC’s services. It fills me with pride and joy to help other women facing breast cancer find help and support through YSC. I am so glad I showed up for the YSC Summit 2015. Thanks, YSC!

Ready to find out how attending the YSC Summit might change your life? Register soon, especially if you want to apply for a travel grant!



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YSC’s Tribute to Cynthia Rubin (1962-2015)

Photo courtesy of Barton, LLP

Cynthia Rubin (1962-2015)

Kind. Fierce. Generous. Funny. Brilliant.

Cynthia (Cindy) Rubin, the second Board President of Young Survival Coalition (YSC) and founding member, passed away on Tuesday, October 20th, leaving her indelible mark on the breast cancer community and all young women affected by breast cancer. Her rich legacy, kind heart, generous spirit, memorable laugh, fierce honesty and endless energy touched too many lives to mention. She was initially diagnosed with breast cancer at age 36 in 1998.

Her brilliant pioneering efforts brought YSC into the forefront of those committed to improving the quantity and quality of life for young survivors, friends and their families. Cindy led with a fierce determination to change as many lives as possible while still caring about the individual members of our community. She brought YSC’s bold mission to the media, the NBA and even the White House. Cindy was the visionary behind YSC’s collaboration with author and filmmaker Beth Murphy. The partnership between YSC and the filmmaker created the Lifetime® documentary; Fighting For Our Future: How Young Women Find Strength, Hope and Courage While Taking Control of Breast Cancer and a book of the same title. Cindy put YSC on the map! And when we were young and struggling, she constantly pulled us up financially and spiritually.

2000 First volunteer leader retreat in NY, NY (cropped)

Volunteers at the 2000 volunteer retreat. Cynthia is standing in the front row, third from the right.

She and her husband, Peter, gave selflessly in so many ways. Cindy launched the effort behind In Living Pink, YSC’s annual fundraiser. Peter often brought the backdrops and worked to set the mood so that Cindy and the committee could host those first fundraisers with incredible personal outreach to everyone in the room. She gave to the YSC no less than she asked others to give.

Peter participated in many Tour de Pink fundraising rides. YSC could count on the couple for donated office and home space for YSC events. Both were beyond generous because they knew how important it was that no young woman felt alone in her fight with breast cancer.

Cindy served on YSC’s Board of Directors from 1998-2008. In addition, she served on the Board of Directors of Judges and Lawyers Breast Cancer Alert (JALBCA) and Sanctuary for Families. She selflessly contributed to each organization always thinking of others first.

YSC is stronger because of all that Cindy gave to us. She was 53 years young when she died of metastatic breast cancer. She lived her life enthusiastically and traveled the world with a voracious appetite for knowledge, art and food unique to each culture. She had an energy level that required working out every day.

On behalf of YSC’s Board of Directors, CEO and staff, this tribute was written by Melody Morrow, Joy Simha, Roberta Levy-Schwartz, Lori Atkinson and Stacy Lewis.

We encourage you to share your personal thoughts honoring Cindy by leaving a comment below.


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American Cancer Society Changes Screening Guidelines: What Does this Mean for Young Women?

Today, the American Cancer Society (ACS) revised its guidelines on screening mammography and clinical breast exams (CBEs) in the Journal of the American Medical Association (JAMA). These new guidelines state that, in women of average breast cancer risk, annual screening mammography should start at age 45 and that CBEs should not be performed by physicians on women of any age. For women ages 40-44, the guidelines state that they should have the “opportunity” to begin annual mammography screening. Prior to this October publication, ACS recommended annual mammograms starting at age 40 and CBEs every three years for women in their 20s and 30s, with annual CBEs to begin at age 40.

As the leading voice for young women affected by breast cancer, Young Survival Coalition (YSC) has released a response on these new guidelines. We carefully reviewed all available research when taking a stance on these issues. We believe that better tools are urgently needed to screen, diagnose, detect and monitor for breast cancer in younger women. You can read our full response here.

Let’s break it down a bit further…


Radiology technician examens mammography test

Radiology technician examines a mammogram.

The mammography screening debate is complicated, and a more thorough discussion of the issues and research can be found in our response.

— Screening mammography is testing performed in a healthy population to examine for presence of disease.

— We have known for some time that screening mammography is not effective in women under age 40 because their dense breasts impede accurate results.[i]

— Screening mammography for women over 40 or 50 years of age does not directly impact the young breast cancer survivors served by YSC.

— We interpret the change in ACS’ guidelines as a public admission that there is also no benefit to screening mammography between the ages of 40-44. Not only is there no benefit, but the risks outweigh the benefits enough for a change in recommendation to be warranted.

— YSC concurs. We are not stating that screening mammography should be completely eliminated. We do believe, however, that women should be counseled about the risks and benefits of screening mammography, in consultation with their doctors, and make an individual decision that is best for them.

The above ACS recommendations address screening mammography only and do not impact the use of diagnostic mammography, a test performed because of a lump or other symptom that may suggest the presence of breast cancer. Diagnostic mammography is a vital tool. Women of any age with signs or symptoms of breast cancer should consult their doctors as soon as possible. In addition, screening mammography only addresses women at average risk of getting breast cancer in the general population. It is not for, and the research quoted does not address, screening in women at higher than average risk of being diagnosed with breast cancer (because of a BRCA 1 or 2 mutation, family history of breast cancer, or prior chest radiation), which includes screening residual breast tissue of breast cancer survivors of any age.

Clinical Breast Exams (CBEs):


Clinical Breast Exam (CBE), photo by the National Cancer Institute.

— The recommendation that a CBE, a physical exam to detect visible and palpable breast cancer by a medical professional, should not be performed was surprising.

— In young women with breast cancer, 80% find the breast abnormality themselves[ii], suggesting that the cancer was palpable.

— YSC has reviewed the data and did not find a strong basis for this recommendation. Therefore, YSC does not support this recommendation. When more clarifying evidence is received, we will review and reconsider the recommendation. We would welcome further explanation from ACS on their decision, as well as elucidation of the harms that could occur from CBEs and would outweigh the possible benefits.

Especially in populations without access to breast cancer screening, or who are too young to receive such screening, we are concerned about the recommendation to eliminate CBEs entirely. 

What now?

— Without other reliable screening options, we believe that CBEs should still be performed.

— We recommend that all women are familiar with their breasts and aware of the signs and symptoms of breast cancer.

— If you notice anything suspicious, you should see your primary care doctor or OB/GYN. It is important that you do not accept “You are too young for breast cancer” as an answer from a healthcare provider.

— If you are a young woman at high risk for breast cancer, you should speak with a doctor about when you should begin breast screenings and which ones are best for you.

Whenever new screening guidelines come out, it can be confusing. Remember that these are guidelines for the general population and not women who are at higher risk. You can educate and empower yourself by reading YSC’s, “Breast Health and You: A Young Woman’s Guide.”

We would love to hear from you. What do you think of these new screening guidelines?


[i] Checka CM, Chun JE, Schnabel FR, Lee J, Toth H.  The relationship of mammographic density and age: implications for breast cancer screening.  AJR Am J Roentgenol. 2012; 198(3): W292-95. Doi:10.2214/AJR.10.6049.

[ii] Ruddy, K. et al., “Presentation of breast cancer in young women,” Journal of Clinical Oncology 27:15S (2009).



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Changing the Face of Breast Cancer Advocacy

When I joined the breast cancer community at age 36, I had no idea my diagnosis would take me into the world of advocacy and science around the disease that was trying to kill me. As I transitioned into my professional role as YSC’s third Chief Executive Officer, I also began my education and training to prepare myself to serve as a breast cancer advocate. It was empowering and something that has changed my life forever.

Within my first year as CEO, I traveled to San Antonio for my first San Antonio Breast Cancer Symposium (SABCS). This is the largest annual breast cancer event in the world, and it’s a place where doctors, researchers and advocates come together to share knowledge and work together to improve outcomes and survivorship for breast cancer patients.


While at this event in 2011, I was taken aback by how OLD everyone was. There were so few people my age that I met them all on the first night. How was this possible at an event with 7,500 people? I remember wondering how we could ensure that the voices of young women were heard if there were so few involved in the cause. I was troubled by this and made a commitment at that moment to do something about it.

Since then, we’ve created a strategy, formed partnerships and built up our staff, and YSC is now ready to address this issue.

YSC’s newest program is called RISE. It stands for Respected Influencers through Science and Education – but what it’s really about is the NEXT GENERATION of breast cancer advocates.


You see, I believe it is YSC’s responsibility to ensure that young women are included in every conversation about breast cancer. And that is no small feat. We need a small army of smart, educated, empowered, connected young women to make this happen. And we’ve figured out how to do it.

So what is RISE? Who can be part of this group? First, I’ll tell you what it is not. It is not a place for everyone. This will be a handpicked, elite group of the top breast cancer advocates who will represent the voices of all young breast cancer survivors.

hannah and sueann

YSC knows many smart, dedicated women who have already spent time, money and energy gaining the scientific knowledge necessary to fill this role – and many have been doing so for years. Those women will become the foundation for RISE. They will be the mentors and leaders of this important work.

But that is not enough. The other part of the program is the education of NEW young women who want the education and opportunity to join these critical discussions. YSC will take on the responsibility to train and teach ten of them every year.

My vision is that someday in the near future, I will be walking around SABCS and hear someone say “I can’t believe how many YOUNG women are here.”

YSC’s mission is to support ALL young women who have been affected by breast cancer in the U.S. – however, it is also to ensure young women are a part of the science and research efforts.

We ALL want a cure for breast cancer. Until that time, YSC is stepping up to invest in the next generation of breast cancer advocates to ensure the voices, needs and experiences of young women affected by breast cancer are a part of every conversation.

Check out YSC’s new RISE program and help spread the word. We are accepting applications through October 9, 2015.


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In Our Own Words: Young Survivors Share Real Stories and Advice

It’s almost October, and although that means it’s time to pull on a sweater, enjoy a spiced pumpkin latte and carve a pumpkin, it’s also Breast Cancer Awareness Month. It can sometimes be overwhelming with so many messages about breast cancer and seeing pink everywhere. This year we decided to enlist the help of the amazing women YSC serves to get real advice from someone who has been there – someone who gets it.

A huge THANK YOU to the fabulous women who took the time to submit a video offering advice on everything from fertility to recommendations on getting through chemotherapy. But above all, these lovely ladies offered words of hope, love and support with a message that YOU ARE NOT ALONE.

Over the next month, we will be featuring eight of the videos received. We will release a new video every few days, so please remember to follow YSC on Facebook and Twitter for updates. While we could not feature all of them this month, you can find all of the great videos in the survivor stories section of our website.

We hope you will view the survivor stories and share your own story and/or advice to contribute to a growing searchable online library of guidance and encouragement from real survivors.

And here’s a preview of what’s to come…







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Categories: YSC SYNC - Survivors

YSC’s New ONLINE Support Groups


A “support group” means different things to different people. For some, it might represent your most sacred circle of friends. For others, it might generate thoughts of a trauma you have experienced.

I walked into my first YSC support group just two weeks after my breast cancer diagnosis at age 36, and I was terrified. I was more nervous about the support group than I was about meeting with my surgeon to plan my bilateral mastectomy. I never thought I needed a support group…. and I couldn’t have been more wrong.

I was lucky. I lived in a place with an established community of YSC young breast cancer survivors. There was infrastructure and scheduled meetings – all the things needed to ensure a safe environment where I could find the support I needed.

That YSC support group changed my life. I met the most amazing, strong, compassionate women I have ever met – and in many ways they saved me as I went through my journey with breast cancer.

Many other young women are not so lucky. We live in a BIG country and while YSC has groups in 128 locations (check out where) nationwide, it is far from everywhere. So what do the young women do when they’re diagnosed with breast cancer in locations where YSC doesn’t exist?

And what about those who are lucky enough to live in a location where YSC exists, but aren’t feeling well enough to travel for the meeting? What if treatment is kicking your butt and you physically can’t make a meeting – isn’t this a time when you need support the most?

YSC has decided to do something about these challenges. Our number one goal is to serve EVERY young woman affected by breast cancer (YWABC) in the U.S. and to accomplish that, we have to do things differently.

I am pleased to announce that YSC is launching online support groups!

Woman in a sofa with laptopWe created this program so that YWABC anywhere in the U.S. have access to support. We invested in this program to ensure that if a young woman affected by breast cancer is not feeling well enough to travel, she can still get the support she needs from the comfort of her home.

So whether you are newly diagnosed or living with metastatic breast cancer, and no matter where you are, YSC is here for you. You can participate via your smart phone, tablet or computer! Three groups are available now and keep an eye out as we continue to expand the program.

Needing support is not a sign of weakness – it is actually a sign of your commitment to your personal pursuit of resiliency, which we at YSC believe is a sign of strength.


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Categories: YSC SYNC - Survivors

What do Katy Perry, Taylor Swift and Adam Levine have in common?

The answer is…YSC!  No, I am not kidding!

We Can Survive Performers

From left to right: Katy Perry, Adam Levine and Taylor Swift.

Three years ago, CBS Radio created a charity benefit concert called “We Can Survive” and they chose YSC as the beneficiary of their generosity. I am thrilled to announce that they are doing it again this year! Over the past two years, CBS Radio has generously donated $150,000 in proceeds from the concert to support young women affected by breast cancer.

YSC Chief Development Officer, Jenna Glazer, Katy Perry and YSC CEO Jennifer Merschdorf at the 2013 concert.

YSC Chief Development Officer, Jenna Glazer, Katy Perry and YSC CEO Jennifer Merschdorf at the 2013 concert.

In 2013, YSC young survivors stood on the stage before Katy Perry performed to help raise awareness that young women can and do get breast cancer. Katy was joined by Sara Bareilles, Ellie Goulding, Tegan & Sara and Kacey Musgraves.

In 2014, YSC applauded performers Taylor Swift, Pharrel, Iggy Azalea, Airana Grande, Lady Antebellum, Paramore, Sia and Gwen Stefani for their commitment to YSC and all young breast cancer survivors

And in 2015… well, you will have to wait and see! The concert is October 24 at the historic Hollywood Bowl in Los Angeles.

YSC State Leader Amanda Nixon, Pharrell and YSC CEO, Jennifer Merschdorf at the 2014 concert.

YSC State Leader Amanda Nixon, Pharrell and YSC CEO, Jennifer Merschdorf at the 2014 concert.


Wanna go? You have a chance to win an all-expenses paid trip! Thanks to Oakley, YSC is having a contest for two free VIP tickets, roundtrip airfare and hotel for a young breast cancer survivor and her guest. How cool is that?

Enter to win and PASS IT ON!! Make sure you register before October 7, 2015. We’ll notify the contest winner on October 9, 2015.

Here is the FULL LINE UP for the 2015 concert: 5 Second of Summer, Calvin Harris, Demi Lovato, Maroon 5, Nick Jonas, Sam Smith, and The Weeknd…. What?!?!?!?! Awesome. Ticket sales open to the general public through Ticketmaster on Friday, Sept. 25 at 10:00AM, PT.


Check out the official concert site!  YSC is honored to be a part of this amazing event, and we thank CBS Radio for their continued dedication to raising awareness that young women can and do get breast cancer! See you in Hollywood!





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Categories: YSC SYNC - Survivors

Living with Metastatic Breast Cancer as a Young Woman

A diagnosis of metastatic breast cancer (MBC) was the last thing I expected. I was a busy wife and dedicated mother to my seven-year-old daughter. I was the family breadwinner, working as a network engineer in Seattle’s fast-paced technology industry in 2006.

At age 36, breast cancer wasn’t on my radar. I discovered a lump, but physicians assured me I was too young to have breast cancer and it was likely an infection. Months later, following a biopsy, I was shocked to be diagnosed with MBC.

While in chemotherapy, I heard about Young Survival Coalition (YSC) from my oncology nurses. I was hesitant to attend a YSC support group, for fear I might frighten other early-stage members, but they welcomed me with open arms and I soon discovered it was equally important for early-stage survivors to see us MBC girls living and thriving with chronic illness.


YSC’s Metastatic Navigator offer critical resources and support to young women living with metastatic breast cancer.

I became an active volunteer for YSC and was honored to review and provide feedback on their new Metastatic Navigator: A Young Woman’s Guide to Living with Metastatic Breast Cancer. This is the guide I wish was available when I was first diagnosed 10 years ago, because it’s full of important information for those living with MBC. It’s designed to empower young women to be their own best health advocates, while connecting them to a network of support.

The comprehensive guide contains the most up-to-date information on metastatic breast
cancer including: treatment options; quality of life issues; communicating with healthcare providers, family and friends about the disease; questions to ask or consider; and resources available for additional assistance. Other topics include: hospice; palliative care; the decision to end treatment; legal decisions and other information for end-of-life planning; legacy projects; speaking to children about metastatic breast cancer; complementary and alternative medicine; adoption and fertility.

Today, my focus has shifted to finding balance and sustainability for myself and my loved ones as I seek to pace myself through long-term treatment. While we ultimately need a cure for MBC, there is good news on the horizon and remarkable advances being made in treatments that are changing the landscape of our prognosis. We are starting to use words like “chronic disease” instead of “terminal disease,” and we are seeing many women, myself included, who are far outliving our initial dire prognosis and rapidly changing the outcome of future statistics.

If you are not already a part of the YSC community, I encourage you to consider it. We are committed in heart and soul to making your journey as comfortable as possible, while helping you navigate through the many questions and fears you’re experiencing. We come together in communal support to share our experiences and lean on each other through periods of grief and loss, as well as celebrate moments of thriving in optimistic possibility. Your fellow survivors are your sisters and we understand the uniqueness of your situation like no one else can.

You are not alone.

In harmony,

Katie Hogan, living with MBC since 2006

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Angelina Jolie Pitt Takes Control of Her Health and You Can, Too


Dr. Corinne Menn, board-certified gynecologist and young breast cancer survivor.

All of us have heard the news about Angelina Jolie Pitt choosing to have her ovaries and fallopian tubes removed as a means of preventing ovarian cancer.

Angelina Jolie’s message was “choose what’s right for you,” and the experts agree. She says, “It is not easy to make these decisions. But it is possible to take control and tackle head-on any health issue. You can seek advice, learn about the options and make choices that are right for you. Knowledge is power.”

I couldn’t agree more. YSC strongly believes and encourages young women to know their bodies, advocate for their own health and persist in asking questions if something doesn’t seem right. It is critical that young women make decisions based on the most current, evidence-based information available; ask questions and feel empowered to get a second opinion!

I applaud Angelina’s frankness and honesty in sparking a discussion in the media that must continue to spread around the world…young women CAN and DO get breast cancer!

Something else I appreciated was that Angelina highlighted the importance and impact of this experience on her co-survivor, Brad Pitt. This truly acknowledges the importance of co-survivors in our journeys! My favorite quote from the Op-ed is, “The beautiful thing about such moments in life is that there is so much clarity. You know what you live for and what matters. It is polarizing, and it is peaceful.” Every young woman diagnosed with breast cancer and her co-survivor knows EXACTLY what she means.

To gain a deeper and more personal perspective than mine, YSC spoke with Dr. Corinne Menn. Dr. Menn is a board-certified gynecologist and a young breast cancer survivor. She was diagnosed at age 28, only six weeks after losing her mother to ovarian cancer.

Although Dr. Menn’s initial test came back negative for BRCA 1 and BRCA 2 mutations, she chose to undergo a bilateral mastectomy to prevent the future recurrence of breast cancer. Several years later, she had a prophylactic bilateral salpingo-oophrectomy (BSO) – the same procedure Angelina underwent – to prevent ovarian cancer.

YSC: Tell us your thoughts after reading the Op-ed by Angelina Jolie Pitt and subsequent news coverage.  Is this procedure “news” and do you think it should cause concern for healthy young women?

Dr. Menn: I’m glad to see that Angelina brings light to this women’s health issue. I particularly like that she notes that “health choices are a part of life not to be feared.” It’s important for patients to be aware of their health choices and not to be afraid of them.

Those who are at-risk are afraid to know whether they are BRCA positive or not, even if they are breast cancer survivors.  The main fear I hear is about the physical implications of knowing. The belief that, “if I’m BRCA positive, I must have surgery,” is false.  There are many choices that come along with being high risk. You must weigh your options and make the choice that is right for you and your family. The more information you have, the more empowered you will be.

YSC: How do women know if they should or shouldn’t be tested for BRCA?

Dr. Menn: There are excellent guidelines and risk assessment questionnaires that help clinicians decide who should receive BRCA testing. In the past, the threshold was higher and testing wasn’t routinely discussed or offered to patients. Doctors shouldn’t test everyone, but everyone should have a conversation about their family history with their doctors at least every few years, or as their family history changes. One thing to note is that if patients had the test before 2012, it may not have been screened for a mutation in a large rearrangement of the gene, also know as the (BART) test, which accounts for a small percentage of mutation problems in BRCA-positive patients.

My mother died of ovarian cancer at 54, only six weeks before I was diagnosed with breast cancer.  After my chemotherapy treatments were done, I was tested for BRCA. I was negative, but it didn’t sit right with me, given my family history. I decided to pursue a bilateral mastectomy and treat myself as being BRCA positive.

Through my practice, I became more knowledgeable about BRCA and asked to add the BART sequence as a part of my testing. Guess what? It turns out I am BRCA 2 positive. Not only am I positive, but my brother, maternal aunt, and cousin are all BRCA 2 positive, too. It is amazing how this one piece of information has impacted my family.

I hear stories all the time from patients who were either not offered the test or were tested prior to 2012, when the comprehensive gene analysis became standard. I have made it my practice to ask women when they were tested and to follow up on the BART test if it was not included.

YSC: Please share with us what considerations and options you had to think about before choosing to undergo the BSO procedure at age 34.

Dr. Menn: It was a hard and emotional decision because it means closing the door on becoming pregnant and because, particularly as a gynecologist, I knew what early menopause meant for me.  On the other hand, I had survived cancer once and experienced the untimely death of my mother. I wanted to be there for my children and husband, and ultimately the benefits of protecting myself from the recurrence of breast cancer and ovarian cancer outweighed the downside of early menopause and everything that comes along with it. Even if you are not BRCA positive, it is very likely insurance will cover the BSO procedure, if it is being done appropriately based on genetic factors and risk factors.

YSC: What are some things to consider concerning family planning when deciding if/when to have the procedure? Should someone be BRCA positive or be high risk due to their family history?

Dr. Menn: Many people don’t know this, but emerging studies show that with the BRCA 1 gene, your risk of ovarian cancer comes at an earlier age. We recommend that if you are deciding to undergo the BSO procedure and you’re BRCA 1 positive, that you have it done once you are done childbearing or before the age of 35, whichever comes first.

For those testing positive for BRCA 2, the risk of ovarian cancer comes later in life and you could wait until the age of 40 to undergo a BSO.  There is also emerging evidence that ovarian cancer starts in the fallopian tubes.  Therefore, some patients are choosing to do their BSO in a two-step process by removing their fallopian tubes first and keeping their ovaries until fertility is not an issue.

There are many options to consider, and women don’t need to make a decision right away. Once a woman decides to have the surgery, there are many health risks to consider. Make sure to push the clinicians to give the appropriate options and treatments that must be considered when removing one’s ovaries, namely for treating early menopause.

YSC: Could you tell us more about the side effects of early menopause? Is there anything breast cancer survivors can do to alleviate them?

Dr. Menn: Immediate surgical menopause comes with many side effects. I see many patients who are not aware of treatments for menopause. Patients need to ask their doctors about how they will manage the side effects before having any procedure done. Often, doctors will tell their patients to “just deal with it; it’s menopause,” which is totally unacceptable.

Some side effects include insomnia, weight gain, sexual dysfunction, vaginal dryness and mood changes.  The approach to menopause varies widely, but there are many non-hormonal things like lifestyle changes and holistic options that can work. It depends on the patient, but I recommend many non-hormonal treatments for breast cancer survivors.

Valerian root is really helpful in treating insomnia. There are great herbal formulations available for hot flashes.  I recommend a local vaginal estrogen, even in breast cancer survivors, to help with vaginal dryness and sexual dysfunction. Coconut oil is also a great natural option. For those who have never been diagnosed with breast cancer, there are many options such as the estrogen patch, progestin IUD and oral progesterone.

YSC: As a young breast cancer survivor, please share your experiences with YSC.

Dr. Menn: I found Young Survival Coalition (YSC) when I was diagnosed with breast cancer at the age of 28 and it was my absolute lifeline. YSC gave me hope and made me feel like I was not alone. YSC immediately connected me with other survivors who had already gone through treatment, and their support was invaluable.

I remember going in to receive chemo and being the only young person in the waiting room. I felt like everyone was looking at me and feeling sorry for me. It was very isolating.  When I found YSC, I no longer felt alone. I have met so many wonderful young women as a result, some of whom are now lifelong friends.

The silver lining to breast cancer has been my involvement in YSC— from riding the Tour de Pink, to attending In Living Pink, to now leading the Westchester County Face 2 Face group. Breast cancer and being BRCA positive has led me to dedicate much of my practice to helping other survivors deal with their unique female health issues.

Thank you so much for sharing, Dr. Menn.  I am certain many women out there will benefit from your story and expertise.

Find out more information on the BRCA gene.

If you or someone you know is at high risk for breast or ovarian cancer but has not been diagnosed with it, learn more from our partner, Bright Pink.

You may also wish to learn more about Dr. Menn.

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Categories: YSC SYNC - Survivors