June Research Round-up

Staying on top of recent breast cancer research news, especially when it pertains to young women, is essential. It is also important that young women participate in ongoing research so that our population is well-represented in data and the results meaningful to young women.

We pulled together a number of recent research articles and ongoing studies or surveys that may be of interest to you. Be sure to follow us on Facebook and Twitter, as we post new articles and studies as they become available.


Studies Seeking Participants:

Metastatic Breast Cancer Project
YSC is an advocacy partner in this unique research initiative that will help to transform our understanding of metastatic breast cancer. If you have metastatic breast cancer, join a nationwide movement of over 1700 patients, doctors, and scientists by sharing your tumor samples, your medical information, and your voice. Together, we can speed the development of future therapies.


New Research Opportunity for Spanish Speakers!

Eres Latina y vives con cáncer de mama metastásico? Por favor tome nuestra encuesta acerca de su experiencia con su proveedores de cuidado de salud cuando le diagnosticado po prima vez metastásico o etapa IV?

English Translation – Are you Latina and living with metastatic breast cancer? Please take our survey about your experience talking to your health care team when you were first diagnosed metastatic or stage IV.


Sexual Adjustment Throughout Breast Cancer Diagnosis and Treatment
This study is to learn what women affected by breast cancer are feeling about their bodies, their intimate relationships and sexuality. Open to all women diagnosed with breast cancer.


The Impact of Chemotherapy and Radiotherapy for Breast Cancer on Cognition and Functional Performance
This study is to find out how cognition and the ability to do everyday activities changes in the 6 months after the completion of treatment for breast cancer. Open to women nearing the end of chemotherapy or radiotherapy.


Share Your Experiences with Insurance Coverage of Hereditary Cancer Services

Complete this survey and help FORCE understand the current landscape for insurance coverage of hereditary cancer-related screening and preventive services. We want to hear from you if you have had difficulty getting insurance coverage OR if your insurance has covered everything OR if you don’t have insurance at all.


Recent Research Results:

Two Years of Adjuvant Tamoxifen Provides a Survival Benefit Compared With No Systemic Treatment in Premenopausal Patients With Primary Breast Cancer
The aim of this study was to evaluate the long-term effect of 2 years of adjuvant tamoxifen compared with no systemic treatment (control) in premenopausal patients with breast cancer over different time periods through long-term (> 25 years) follow-up.


Outcomes Matter: The Power of Prospective Outcomes

A recent SEER-NCI study looked at outcomes data of over 44,500 breast cancer patients who had Oncotype DX testing and found that at 5 years, patients with a recurrence score less than 18 had an excellent breast cancer survival rate using hormone therapy alone (no chemo).  Breast cancer specific mortality was less than .5% in node negative patients and 1% in node positive. For Infographic: Prospective Outcomes Infographic


Exercise Reduces Cardiovascular Risk in Nonmetastatic Breast Cancer Patients

A recent study showed that exercise reduces the number of cardiovascular events in nonmetastatic breast cancer survivors. Those patients adhering to national exercise guidelines (about 9 hours per week) had a 23% reduction in the risk of cardiovascular events.


Boston College Women’s BRCA Study
Dr. Sharlene Hesse-Biber at Boston College is conducting a study about the genetic counseling experiences of women who are BRCA positive. Through the Boston College Women’s BRCA Study, they hope to address the substantial lack of research on the ways that women deal with a positive test result for the BRCA 1/2 gene mutations. This project will make a significant contribution to understanding of individuals’ experiences with genetic testing, how this impacts families and relationships, and how genetic counseling should approach the BRCA experience for women. If you have any questions please contact hesse@bc.edu.

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Don’t forget to follow us on Facebook and Twitter, for the most up-todate articles and studies focused on young women and breast cancer. 

 

 

 

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Categories: News & Updates

Happy Father’s Day!

This Sunday is Father’s Day and we’d like to take time to recognize the important role father figures serve in supporting the young women in their lives facing breast cancer. These men are there for you from diagnosis through treatment and beyond. They offer a shoulder for you to cry on, a hand to hold when you need strength and their undivided attention when you need someone to listen.

Thank you to all the amazing co-survivors out there for ensuring young women aren’t facing breast cancer alone!

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Grace Quote

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Did you know that we also offer support for co-survivors?!

We understand that breast cancer doesn’t just affect the person diagnosed, it also affects the people that surround and support them. We offer a number of useful resources and tips to ensure you’re receiving the crucial support you need to help you in your vital role as a co-survivor and caregiver.

– Caring For You
How to Help
Handling Finances
– Get Involved
Caregivers’ Bill of Rights

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Next Steps In Our Adoption

A few of weeks ago, my husband and I decided to move forward with adoption. I thought it might be helpful to provide some advice on next steps for those considering the same.

After the first big step in deciding to adopt, you’ll need to consider the different types of adoption. As I mentioned previously, it’s definitely worth finding your nearest version of Adoptive Parents Committee and attending a conference or meeting. Here you can connect and learn about the different routes to adoption. I also found the How to Adopt A Child Guide on Adoption.com to be a great resource.

This guide is particularly useful in walking you through the difference between ‘agency’ and ‘private’ adoption. Agencies will help you with the whole adoption process, from the legal stuff to finding and matching you with a birth mother. While with private, the person or couple will do a lot of this themselves and hire an attorney for the legal parts. Which process you decide on is a personal choice and worth exploring early on. You’ll also need to look into the funds required for adoption, as it’s definitely an investment of money as well as time.

After a lot of research and discussion, my husband and I have decided to take the private adoption route. We’ll need to hire an attorney who will undertake all the legal paperwork, along with a social worker who will conduct a home study, which includes multiple interviews and a home visit.

Once you’ve decided on either an agency or private adoption, you’ll need to collect the required paperwork – an activity that can take some time! Among other things, you’ll need to provide:

 – Background checks
 – F
ingerprints for the Court
 – F
inancial information
 – L
etters of recommendation from non-family members
 – H
ealth insurance information
 – M
edical backgrounds

Me&B2

My husband and I can’t wait to be parents!

While this may seem like a lot, my husband and I see it as a project. Now that we’ve figured out what we need, we’re working together to collect everything. It’s important to be organized and my advice would be to split up the tasks, otherwise it can get confusing!

So that’s where we are right now as we go through the adoption process. We’ll continue to keep you updated as we move forward in becoming parents!

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Grace Foxton, YSC’s Northeast Regional Field Associate, has been sharing her adoption journey with us. Be sure to check out her first post Our Decision to Adopt. As a young woman affected by breast cancer, she hopes her experience will help other young women with the logistics of the adoption process.

 

 

 

 

 

 

 

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If I Can Do It, So Can You!

“Hi Dad. Do you mind if I stay with you in April? I’m planning on riding in the Tour de Pink for breast cancer survivors.”

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Amie meets Minnie before the start of TdP South

That was how the phone conversation started last fall when my daughter, Amie, told me about her intent to celebrate her one year anniversary of being cancer free by riding 200 miles over a three-day period, from Disney World to Jupiter Beach. Since we live in Orlando, she called us to ask that question — which was silly, because the answer was obvious. The only question I had was whether I wanted to ride with her. Without thinking about it too long, I told her I’d do it too.

I was not all that concerned about Amie’s ability to complete the ride. I knew how tough she was. I was her USSA club swim coach when she was in high school. She was the team’s premier distance swimmer. I also slept in the hospital when Amie, only 28 years old then, had her mastectomy. I saw her refuse pain medications. When she wanted to get out of bed at 3 a.m., just 10 hours or so after the operation. We walked all over the hospital that morning.

I should have been a little concerned about my ability to complete the ride. Even though I’d run lots of marathons and completed plenty of triathlons, nearly 30 years had passed since my last lengthy bike ride. Before retiring from teaching and coaching, I’d retired from the Marines. Marines suffer from the common delusion that we can do anything, especially physical things, albeit with a little preparation. Two weeks before my 65th birthday, I was going to ride 200 miles with my daughter; no problem, I thought.

I took my 20 year old mountain bike down to the local bike shop to see if it could be reconfigured with thinner tires and maybe a tri-bar. The service manager did his best (but failed) to keep from laughing. He tried to talk me into a bike way past my budget. Eventually, I bought a road bike online and assembled it in my garage. I sent a picture of it to Amie; told her I was getting ready. That was four months from the Tour de Pink’s inaugural South ride.

Neither of us was fully prepared for what was in store. Maybe I should say “in sore.” I’d done the physical preparations for my legs, lungs, and heart conditioning. But my rides were, at their longest, 90 minutes and not that many of them. There are two areas where a ride longer than 90 minutes takes it’s toll, areas that I’d not considered. First is the numbness in the hands — the kind that makes you lose all sensation of your grip on the handle bar. In fact, there were times I wasn’t sure I had a handle bar. The second, and most critical for me, was the capacity for the seat to turn skin into a state of raw, painful pulp. I think a rider summed it up best at the start of day three, as we left Club Med in Port St. Lucie, when he declared to his friends “I think my ass is holding my brain hostage.”

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Amie crossing the finish line on day three!

In the end (no pun intended), memory of the pain dissolved while the memory of the people we met on this journey never will. Because I live in Orlando, I’ve become a big fan of Kyle’s Bike Shop, who provided all the road assistance at Tour de Pink South. He even provides locally brewed beer on tap in his shop while your bike is being serviced!! The ride marshals were some of the greatest folks we could ever expect to meet. They nurtured, encouraged and provided sage advice at just the right times throughout the ride. The YSC staff would go to any extreme to make sure the riders, and even spectators, were well taken care of — beginning weeks before the start and continuing well after the final rider finished. But most moving for us were the many stories. Some were about victories, some were about fights lost valiantly by the most uncommon warriors of life. There are no words to adequately describe the ubiquitous power of hope and strength present throughout those three unforgettable days.

It was our first Tour de Pink and as we drove home afterward, we found ourselves already planning for the next.

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If we can do it, you can do it!

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Has Bob’s incredible account of his first TdP ride inspired you?
This ride is for everyone — whether you’re a young woman affected by breast cancer, a co-survivor riding in support or memory of loved ones or someone who just loves to cycle. You can select a one or three-day ride and they’re fully supported with bike and motorcycle marshals, support vans and ample rest stops. Three-day riders are provided hotel accommodations and all meals.

Consider joining this amazing rolling community by registering for an upcoming Tour de Pink ride:

East Coast, September 16-18, 2016
Ride from scenic Bucks County, Pennsylvania, to the beautiful beaches of Cape May, New Jersey.

West Coast, October 14-16, 2016
Ride from the beautiful beaches of Ventura, California, to the breathtaking views of Encinitas, California.

South, 2017 Date TDB, Registration opens this Summer! Learn about the 2016 ride.

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Learning to Love My Body Again

In October 2015, I saw a post on the Young Survival Coalition (YSC) Facebook page about a show called “Skin Wars.” YSC is an organization that supported me after my breast cancer diagnosis. They were working with Skin Wars to reach young breast cancer survivors for an upcoming episode. I had never heard of the show, but when I learned it was about body painting, I was interested. Body painting was on my “bucket list.”

Courtney and kids

“My daughter Sedona’s graduation from the University of San Diego last May. I didn’t think I’d be here to see her graduate from kindergarten, much less college. My other kids are Sage, Sienna and my son Slayton.”

I submitted my info to YSC and got a call from the show. Upon learning I would be required to stand nearly naked on national television while being painted from head to toe, I had second thoughts! However, October was the month of my 19th Cancerversary as a two-time breast cancer survivor and this looked like a fantastic way to celebrate being alive.

I haven’t been naked in front of anyone for years. I’ve been a single mom of four kids since 2008 and I rarely date. Without clothes on, I look like the patchwork doll from Nightmare Before Christmas. I have scars everywhere from my nearly 20 surgeries since my first breast cancer diagnosis at the age of 33. My second diagnosis was just a year after my first treatment ended. I also found out that I carry the BRCA2 gene mutation.

I am butchered from my neck to my rear and under both arms, having had both breasts removed and reconstructed. My gluteal flap reconstruction in 1995 nearly killed me. My back is scarred from a partial latissimus flap and a melanoma removal. My right breast is missing a nipple and is indented and shaped oddly. It is also quite a bit smaller than my left breast. I feel ok in clothes, even in workout bras and bathing suits. But I don’t feel good at all about myself when I am naked. I refuse to look in a mirror and get dressed in the morning as quickly as possible. My body image certainly gets in the way of me wanting to date. In a world of perfect, airbrushed women, where do I belong?

I talked to my kids about doing the show. I have a 10-year-old son, two 14-year-old daughters and a 22-year-old daughter. My three younger kids are adopted, as breast cancer not only took my breasts and my hair, but it also took my fertility.  My girls are just 13 days apart and raised like twins. My oldest (my only biological child) found out at the young age of 19 that she, too, carries the BRCA2 gene mutation.

My kids were all for me doing the show, so I went way out of my comfort zone and said yes. I was the oldest breast cancer survivor model on the show, at age 52, and the only mom. My assigned painter was also the oldest on the show and the only mom, so we were meant to be a team!  

Skin Wars Season 3 Episode 307Once on the studio lot, we were asked to change into black leggings and pasties for the upper body painting. I was terrified, as I looked around the room at the other girls, who were all younger, thinner and prettier. But this was a great group and we bonded quickly. We were all diagnosed with cancer at a young age, and all doing something out of my comfort zone.

There were five body painters, including a few men. Again, I was terrified. I hadn’t had a guy look at me or touch me in years.  Thank goodness I was paired up with one of the female painters, and then the work began. I decided that I would not look around to see what anyone else looked like as they were being painted and I would not catch a glimpse of myself, either.

When the time was up, my painter picked up a mirror and showed me her creation. It was at this moment that I understood the expression “It took my breath away.” Seeing myself look so beautiful without clothes literally took my breath away – and then the tears started to flow. I looked at the other young survivors, each with a part of their story painted on their beautiful bodies.

Next came the full body challenge. We got into our undies and pasties and headed down in our pink robes. For this challenge, our painters listened to our stories and then painted them on our bodies – head to toe and front and back. Again, I was in complete shock at what an amazing job my painter did.  I looked beautiful, like a princess warrior! My story was there for all to see – my BRCA gene mutation, my kids, my breast cancer 60-mile walks (I have completed 14), my Pink Wings (I have a website called Pinkwings.com and my teammates, family and I wear Pink Wings on all my Cancer Awareness walks).

To say this experience was amazing is an understatement. It changed my life, the way that I feel about myself. I wish there was a way for every survivor to have this opportunity. I have never felt so beautiful and powerful in my life….and to think I did it NAKED!

My advice to those who are dealing with body image concerns is to take time to let your body heal after the torture it has been through with breast cancer.  Then take chances, do something out of your comfort zone, and get out of your own way, as it is the only thing stopping you from seizing the day! I feel more confident and definitely more empowered after my appearance on Skin Wars. Pushing myself outside my comfort zone gave me new perspective, and I wish the same for every young survivor.

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Interested in watching? Set up a Viewing Party at home or a local spot so you and your friends can celebrate these amazing young women as they share their survivor story with the world through amazing body art. While you’re watching, you can also join the Skin Wars’ new interactive play-at-home game: www.playskinwars.com!

You can tune into this very special breast cancer awareness episode of GSN’s Skin Wars on Wednesday, June 8 on GSN at 9pm ET/PT (8pm Central). The episode features five young breast cancer survivors, including Courtney, who will share their stories that are translated into art by the talented body painters who are competing on the series for a $100,000 grand prize. The episode will feature two body painting competitions that will showcase the compelling story of each young survivor.  Skin Wars is also donating $10,000 to the Young Survival Coalition in honor of these brave models.

 

 

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A New Sense of Normal: Figuring Out Life After Breast Cancer

The end of treatment was both exciting and terrifying, much like riding a roller coaster, and I found the finish confusing. For months, I had a routine and aggressive therapy to fight the cancer, along with a great team of doctors and the wonderful support of family and friends. Then, it was over and I had to figure out my new sense of normal.   

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Jennifer and her son, Parker, in 2000.

Our world turned upside down in 1999 when I was diagnosed with breast cancer at age 27 while 22 weeks pregnant with our first child. With no family history, I was fortunate that my obstetrician took it seriously when I showed her the lump in my breast. A normal pregnancy quickly changed into a high-risk one while I underwent a mastectomy and three months of chemotherapy. The day after my last treatment, our son, Parker, made his entrance into the world five weeks early, but completely healthy.

Once treatment ends, friends and family are often hoping to see the return of the “old you.” However, I wasn’t the same person I’d been before my breast cancer diagnosis. I didn’t consciously let it change me; but still, I was a different person. I was figuring out how to be a new mother, dealing with a completely altered body and facing my mortality at a young age. I had lost my innocence. I had also lost trust in my body’s ability to fight anything that might be lurking. After receiving so much attention from my doctors, family, and friends, I felt a bit alone when it ended abruptly. Suddenly, I was supposed to move past this episode and go back to life the way it used to be. That was impossible, so I had to find my own new sense of normal.

Finding a New Normal

It has been more than 16 years since I heard the words “You have breast cancer.” Visits to the doctor are less frequent, but the anxiety of waiting for medical test results serves as a sharp reminder of my new normal. Although having cancer is anything but a blessing, it has brought many wonderful things in my life. The greatest gift has been meeting so many incredible women and men over the years because of our shared cancer experience. I don’t know that our paths would have crossed otherwise.

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Nordie’s at Noon co-authors Jana, Patti, Kim and Jennifer

My new normal has evolved over the years to include:

Being an advocate for myself and others – My advocacy training has taught me how important it is to stand up for those who are unable.

Paying it forward – It is important for me to give back and be there for other women facing breast cancer. Being a SurvivorLink volunteer allows me to help others when they need it most.

Finding my inner cleavage – It has not been easy, but I have learned to love the body I now have – scars and all.

DSCF4226favLearning to take time for myself – As a Mom, it is hard to be selfish with your time, but I know it is important. The time I allow for exercise each week is a huge stress reliever.

Learning to not take life too seriously – Anyone else find themselves on the AARP mailing list after your diagnosis? I could share many funny stories on mishaps with my breast form before my reconstruction.

Taking risks – Having cancer allowed me to be more of a risk taker – including co-authoring a book with four “breast friends,” saying yes to things like zip lining, riding 200 miles in YSC Tour de Pink and having the courage to leave my comfortable corporate marketing career to follow my passion and work for YSC.

Valuing each and every day – Life after breast cancer included the wonderful surprise of our daughter, Emma, born in 2003. Life is not perfect and some days are harder than others, but I am truly thankful every day to celebrate this roller coaster of life with my family and friends.

Celebrating Cancer Survivors Day

National Cancer Survivors Day® is a worldwide Celebration of Life that is held on the first Sunday in June. It’s a day when people around the world come together to recognize the cancer survivors in their community, to raise awareness of the challenges these survivors face, and, most importantly, to celebrate life. There are an estimated 250,000 breast cancer survivors who were diagnosed with breast cancer before their 41st birthday.

Anyone who has been diagnosed with cancer knows that each day is a gift that often comes with a lifetime of side effects. While we are celebrating survivorship, it is also a time to reflect on the many who have been taken too soon by this horrible disease. Each year, breast cancer takes 1,000 young women – interrupting lives and dreams, and forever changing those who love them. My dear sisters, you are not forgotten.

We each have to figure out our new normal and the YSC Community is here to help. No matter how far out you are from your original diagnosis, you always have a home.

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More Info

Read more about Jennifer’s story of “Battling Breast Cancer While Pregnant”

Download or order a copy of YSC’s Post-Treatment Guide to help you navigate life after treatment ends. YSC has guides to help you from diagnosis, post-treatment, long-term survivorship and living with metastatic breast cancer.

Interested in learning more about advocacy? Find out how you can make a difference.

Learn facts about young women and breast cancer and the issues they face.

 

 

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Recognizing the LGBT Community

1024px-Rainbow_flag_breezeJune is Pride Month – 30 days dedicated to taking a stand against discrimination and violence toward lesbian, gay, bisexual, and transgender (LGBT) people to in order to promote their self-affirmation, dignity and equal rights, increase their visibility as a social group, build community and celebrate sexual diversity and gender variance. Although this is a time to highlight many of the wins the LGBT community has achieved over the years, this community continues to face a wide range of health disparities. As an organization focused on young women affected by breast cancer, we recognize the many barriers that LGBT people face and their negative impact on breast cancer diagnosis, treatment and beyond.

Barriers to care

LGBT people face a number of barriers to receiving quality healthcare. First, they’re less likely to have health insurance, because many employers do not provide health insurance coverage for unmarried domestic partners. Another major barrier for LGBT people is that they’re less likely to receive routine health screenings, which can result in later diagnoses. LGBT people may not seek routine care for various reasons, including insensitivity from healthcare providers who aren’t knowledgeable about their health needs and concerns; varying levels of discrimination within the healthcare system, including from healthcare professionals; and discomfort discussing sexual orientation with healthcare providers.

One of the first steps to encouraging LGBT people to better utilize their healthcare options starts with the healthcare professionals themselves. Healthcare providers should be culturally sensitive to and knowledgeable about the specific health concerns of LGBT people, and create an environment where they feel safe. Improving the cultural competency of healthcare providers will improve the level of care that LGBT people receive and ultimately translate into better health outcomes.

Some organizations, like the National LGBT Cancer Network, provide trainings to increase healthcare providers’ cultural competence to enable them to more effectively treat LGBT populations. Interested in learning more about cultural competency trainings? Their website has more information about their offerings, including their LGBT Cultural Competence Best Practices Manual.  

Higher rates and risk factors

Besides the many barriers that LGBT people face in accessing quality care, they also experience higher rates of breast cancer compared to heterosexual women. This may be attributed to a cluster of risk factors that tend to be more prevalent among LGBT people such as smoking, alcohol consumption, obesity and either giving birth later in life or not at all. All of these may stem from the stress, stigma, and discrimination associated with their sexual orientation.

Not enough research!

We need to more fully understand the barriers and risk factors that LGBT people face so their healthcare needs can be better addressed. Research on this population is lacking, particularly in regards to cancer incidence. Data that is available is limited and contradictory, often based on sample sizes too small to draw meaningful conclusions. Without adequate data, meaningful policies and interventions cannot be developed to combat cancer disparities and LGBT communities are left without the information needed to advocate for change.

Future research focused on breast cancer among LGBT people is essential if any progress is to be made to support this community. As an initial step, all national health surveys, cancer registries and medical records should include sexual orientation and gender identity (SOGI) questions. With more accurate and complete information, the health disparities that LGBT people affected by breast cancer face can be addressed.  

To learn more, read The National LGBT Cancer Action Plan, a white paper from the 2014 National Summit on Cancer in the LGBT Communities.

Where do we go from here?

The first thing YOU can do is be your own best health advocate. Keep up with routine health exams.  Regardless of your sexual and gender identity, you should feel completely comfortable with your current healthcare provider. If you don’t, find another one! Ask friends, family or your community for a recommendation on a healthcare provider who is going to make you comfortable and address your individual needs.

Check out our Community Forum, which offers a whole section on LGBT Topics and an opportunity for you to connect with others within this community. There are already engaging conversations happening, but feel free to ask your own questions and seek support.

Order a free YSC ResourceLink Guidebook. This guide offers a wealth of information and resources, including a section just for women who partner with women.

Take advantage of our support programs that will connect you either online, in-person or one-on-one with other young women affected by breast cancer. YSC staff can help put you in touch with someone you can relate to, including people from the LGBT community.

If you’re a healthcare provider, consider taking a cultural competency workshop with your colleagues to better ensure that your LGBT patients receive the care they need. Additionally, it’s important to provide relevant health materials to LGBT patients and to update all medical forms to be inclusive of different sexual orientations and gender identities.

Additional Support

National LGBT Cancer Network: Advocating for Health Equality

Whitman Health & Wellness: The Mautner Project

CenterLink: The Community of LGBT Center

Howard Brown Health: Trans and Gender Non-Conforming Health

As we look forward

At YSC, we are committed to offering programming that is inclusive and addresses the needs of women from every background. In order to ensure we continue to do so, we are reviewing the results of our recently concluded Diversity and Inclusion Survey. Although the survey results are still pending, we intend to use our findings to improve our offerings for specific populations, including young LGBT people affected by breast cancer.

 

Research Sources:

 – National LGBT Cancer Network: Lesbians and Cancer
 – Susan G Komen: Breast Cancer Statistics: Lesbians and Bisexual Women
 – Dr. Susan Love Research Foundation: What do we know about lesbians and breast cancer? Not enough! by Liz Margolies
 – The National LGBT Cancer Action Plan: A White Paper of the 2014 National Summit on Cancer in the LGBT Communities by Burkhalter, J. E., Margolies, L., Sigurdsson, H. O., Walland, J., Radix, A., Rice, D., Maingi, S. 
 – Office on Women’s Health, U.S. Department of Health and Human Services: Lesbian and bisexual health fact sheet
 – The National LGBT Cancer Network: Barriers to LGBT Healthcare  

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Our Decision To Adopt

This month, with many of our thoughts focused on Mother’s Day, YSC featured a blog post on fertility and breast cancer, exploring options available to those who have experienced issues due to treatment. “Infertility After Breast Cancer” was a wonderful and informative piece, but in thinking about it – I wanted to share my own journey to becoming a parent.

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Our wedding in France, 2014

I was diagnosed with breast cancer at 31, had chemotherapy and radiation, and I’m now on monthly Lupron shots and Tamoxifen. One of the hardest things my husband and I had to deal with was knowing my fertility would most likely be compromised. What we didn’t consider was the safety of coming off hormone treatment. The first oncologist I spoke to was happy for me to take a break from my medication after two years. I met with another oncologist who felt differently. Based on the aggressiveness of my cancer, the fact it had spread to my lymph nodes and was hormone responsive, his advice was for me to wait five years before trying to have a baby naturally.

This information was the catalyst for my husband and I to consider all the options available to us. I should say here that everyone is different. For some people taking a break from treatment and trying to have a baby or using frozen eggs/embryos or working with a surrogate is right for them. While we definitely researched these options, we felt adoption was the route for us. It means I can stay on my medication and, ultimately, we can become parents – the most important thing for us. Of course, not having a child naturally is a difficult thing to accept, but it might be an option for us a few years from now.

Before we decided to adopt, we met with friends who recently adopted a little boy. It’s so important to connect with people who have experienced and gone through the process. Their first piece of advice was to attend the annual conference of the Adoptive Parents CommitteeWe attended wonderful sessions and heard from both adoptive and birth parents on the experience. We really educated ourselves on the process and options available to us. A social worker’s advice was to leave the conference, go home, watch a silly movie, eat take out and not talk about adoption! It really helped by giving us time to process everything we’d heard. A couple days later, we went for a walk and I asked my husband “so, how do you feel? Do you want to adopt a baby?” His answer was a lovely “yes!” And so begins our exciting adventure. 

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Grace FoxtonYSC’s Northeast Regional Field Associate, has agreed to share her adoption journey with us, offering a glimpse into the process. As a young woman affected by breast cancer, she hopes her experience will help other young women with the logistics of the adoption process. Please stay tuned in the coming months as Grace checks in with us!

 

 

 

 

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Legacy: New Meanings & Methods

“The quest to understand and fulfill life’s mission has stimulated Philosophical and Spiritual literature for millennia. Each of us is faced with the issue of re-examining what we have done in our lives and reflecting upon “Who am I, Why am I here… and what is there still to do?”
Roshi Joan Halifax

Normally we have our whole lives to answer these existential questions, but for a young person living with incurable or metastatic cancer there is an urgency – a feeling that the end is near and there are bucket lists that haven’t been checked off or completed.

Rethink Breast Cancer created a film called I AM ANNA which tells the insightful story of Anna Craig: a mother, wife, artist, architect and young woman living with metastatic breast cancer.

The film follows Anna’s inspiring journey to create her legacy by building an addition to her house that fulfills her artistic dreams and leaves something for her family. Through this process we watch her help build a support network for young metastatic women and come to terms with the conflict of achieving her “bucket list” or legacy and balancing that with the needs of her family.

The film also explores the meaning of legacy and the many ways one can leave their mark on the world and in the lives of those they love.

 

Here are some steps to take in developing a strategy to help fulfill your dreams:

Explore Ideas

The word legacy has different meanings for everyone. It can be a bit intimidating and burdensome when we think about it in literal terms. However, we can think about it in broader strokes – what is that you want to leave in the world? How do you want to be remembered, and who do you want to remember you?

In I AM ANNA, Anna Craig talks about wanting to leave a legacy in three aspects of her life: as a mother, as an architect and as an advocate in the cancer world. During the film she is engaging in various art projects and the larger project of renovating her house, presenting the audience with the idea that legacy is everything from creating a list of your favorite films to going on a safari in Africa. It is about making memories and being true to yourself and the way you wish to live your life, no matter how long that is.

A good place to start is asking yourself the following question: What aspects of yourself and your life story are you passionate about sharing? And then: Who do you want to share it with?

Here’s a short list of ideas for legacy projects:

 – Scrap books + photo albums
 – Cards for loved one’s birthdays or special occasions
 – Short video diaries
 – Quilts or blankets for the crafters
 – Playlists of favorite music or movies
 – Time capsule


Create a plan

Before you set off on a project or task, it is a good idea to take stock of the issues that may get in your way. For example, what’s doable? What is the impact you are hoping to have? What research do you need to do to get there? What is the impact on family or friends? What is the impact on your health?

Think about it like a thesis statement or a road map of getting to where you want to be and what steps need to happen to get you there. If you want to go on a big trip, what type of financial planning needs to happen? If you have a photo project that you would like to complete, what platform will you use to put it together? Do you need help with your plan? Who are the people that can help you?

I always suggest some cautious optimism when making plans as things can change quickly. Symptoms and side-effects of treatment can side-line an art project or a trip. It’s a good idea to re-evaluate your plans as needed as priorities can change.


Engage your network

It’s really important to engage the people you love in the things that you are passionate about and the ideas you have for your future – however long that might be. Not only do more hands make less work, but there is the opportunity to share some special moments with those in your close circle through projects, tasks and conversations about your legacy.

Talking about end of life issues, including legacy, can be really difficult with the people you love. In my Psychosocial column, I give some suggestions for how to choose the right people to talk to and suggestions for starting that conversation.


Be good to yourself

“…You somehow have to find yourself in your diagnosis and be able to live with it as you’re living every moment for what it is; but also you are living life fast…not every second has to count, you also have to accept that you are a human being and embrace being human.” – Anna Craig

Part of living with an incurable and debilitating illness is the process of coming to terms with change. It’s important to grieve your losses, especially the loss of your idyllic dreams or future goals. You might feel a lot of pressure post diagnosis to get everything on your bucket list done, tomorrow.

As you begin to experience what a metastatic diagnosis means for you, consider that legacy is not always about big goals or making major marks in the world. Sometimes it’s as simple as nurturing the relationships with the people we love and making memories that you can both treasure through the time you spend together, while you have it. Being present and finding ways to live in the moment, instead of steps ahead in the future can help create space for you to live your dreams.


For more on legacy check out:

 – Rethink Breast Cancer’s LiveLaughLearn Series, featuring topics such as Metastatic Breast Cancer, talking to kids about cancer, and care for the caregivers.

 – Metastatic Diaries

 – YSC Metastatic Navigator: A Young Woman’s Guide to Living with Metastatic Breast Cancer

 – End of Life Series: Let’s Have Dinner & Talk About Death, featuring Michael Hebb, founder of Death over Dinner, who explores a unique way to gather friends and family, fill a table and have an important discussion on our end of life wishes.

 

 

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It’s OK, Mommy’s Here

2014-11-06 18.14.05We understand that facing cancer is difficult, especially so when diagnosed while raising children. Melissa Eppard, today’s guest blogger, really gets that. She understands the challenges of motherhood while facing breast cancer. She was diagnosed when her young son, Julian, was only 3 years old. Her inspiring blog features a post that explores the challenges of communicating with a small child about breast cancer and the difficult task of reassuring them that “It’s OK, mommy’s here.”

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The impact of a serious diagnosis on a family is far reaching and the healing continues long after treatment is over. “Mommy’s dying,” Julian declared, his sticky half boy-half baby fingers stuck to the short hairs on my neck. He looked into my eyes to gauge a response and I could tell by his little smirk he had no idea how hard that blow just hit me. I took it in with a deep inhalation, tempering the sinking heart feeling with my best grownup face.

At the age of 5, what does he really know about death? I can see him trying to understand, trying on words and concepts that creep in from school or television, but certainly not from home, the hushed tones of uncertainty kept to nighttime whispers and secret diaries. Last summer we found a garter snake in the yard, already stiff with the rigors, a little blood around the mouth and head where some bird of prey struck the final blow. “Awe, poor snake!” he kept exclaiming. I told him it was dead, that dead things can’t move and feel anymore. I spoke very basically about the food chain, my simplified circle of life talk. The next day it was gone, neatly removed by nature, proving my point that everything has its use and place.

064Then in the fall, his beloved Chloe died. The sweetest, smooshiest yellow lab that ever was. She would let him climb over and under her belly and spoon with him like he were her very own pup. Arriving home the first time without Chloe, I had to explain she would never return, that she was in Heaven now with her sister Hannah. I tried to find soothing words. He just wailed and his heartbreak was sadder for me than the loss of the dog. I could feel a little piece of his childhood breaking off and dissolving in this moment as I held him, his little face soaking my shirt.

Julian was only 3 years old when I was diagnosed with breast cancer. Just 1 week after his 4th birthday, he came home to find his Mommy sequestered in the bedroom, barricaded by a baby gate. In drug induced semi-consciousness, I remember hearing him screaming at the gate, anguished that we dare be separated. I choked back my sobs, lest I tear at the surgical seams. Each shudder of sorrow brought a new wave of pain. Never will I forget the sound of him crying for me and my arms and chest unable to bear him. Mixed in with the muddy memory is my husband crying too, the two of them holding each other. Joey trying to convince himself, even more perhaps, that I was going to be alright.

Maybe it was a day or two later, after much soothing and cuddling, he was carefully brought to me. I was the delicate newborn, lying on the other side of a pillow buffer. Joey controlled his spindly little limbs as his hands found my face and hair and he pressed his soft baby cheeks to mine. His eyes looked so old as he peered into my face for understanding and reassurance.  “It’s OK, mommy’s here. I’m resting. Mommy just needs to sleep.”

For weeks beforehand, we read Nancy Reuben Greenfield’s “When Mommy Had a Mastectomy.” I can’t say if it registered. He didn’t care to stay in my lap and look at the pictures as they weren’t nearly as riveting as the Thomas the Train stories. At that point I didn’t even get into Sherry Kohlenberg’s “Sammy’s Mommy Has Cancer.” I was still wallowing in my shock trying to find preschooler words to convey something I couldn’t understand.

How did I get here at age 36? After all the organic food and exercise, holistic medicine and mind/body awareness, law of attraction, talk therapy, forgiveness… certainly I was not perfect, but this? Early childhood Catholicism colluded with eastern thinking. Was this karmic payback for the sins of my past lives or perhaps for the old shadow thoughts of my unworthiness of love?

The doctors ministered their science. BRCA1+ hereditary cancer was the proclamation. The very thing that took my grandmother at age 57, just a year before I was born, would resurface in me. I found the lump in my left breast one day while Julian clambered over me like a jungle gym. Surely it was a swollen lymph gland I thought, as I doubled up on the homeopathic medicine and waited. It would be 5 months later when I finally saw a doctor and the wave of probing, testing, second and third opinions swept over my life. Going with the most aggressive course of western medicine, a double mastectomy and chemotherapy, was what everyone recommended to combat the “Triple Negative” tumor, known best for fast growth and high recurrence rates.

091I looked everywhere for a way out, for absolute proof that I could kick this with colloidal silver or pure essential oil of orange or megadoses of Vitamin C. Everyone in my local Woodstock, NY and online communities rallied with well-intentioned advice. One man, touting a sure-fire cannabinoid oil cure called me just a few days before surgery saying, “Don’t let them take your boobs!” That night I stared at my little boy’s sleeping face for a long time.

One year a survivor now, with my son perched on my lap, I want to reassure him that all these sacrifices were not for nothing. I speak quietly and simply about death. “When you die, you go away and you don’t come back.  I would be in heaven and you wouldn’t see Mommy anymore.” He is quiet as this sinks in. I add, “Mommy is not dying. I’m staying right here with you and Daddy for a long, long time.” In my heart this is the loudest prayer. I hope I am telling the truth.

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There are a number of useful resources and tips on children here, as well as the Helping Children Cope with Breast Cancer printable.

Interested in chatting with other parents? Then check out the parenting section YSC’s Community Forum!

 

 

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