The Turning Challenge

Hear My Voice Outreach volunteer Maggie Kudirka started #TheTurningChallenge to help raise research funds and awareness of resources for metastatic breast cancer.

One year ago, when I was 23 years old, I learned that I have metastatic breast cancer that has spread to my sternum, spine, and pelvis. Metastatic cancer is cancer that has spread from its original location to another body part.  It is sometimes called advanced cancer or stage 4 cancer.

I am among the 10% of women who are initially diagnosed with metastatic breast cancer. It was the last thing I expected.  Other than being female, I have none of the risk factors for breast cancer: I am very young, thin, physically active and fit. I have never used any hormonal medications; I don’t smoke, drink, or use drugs; I eat a healthy diet.  Genetic testing indicated I do not carry the breast cancer genes. But, I have metastatic breast cancer.

Metastasis is what makes breast cancer a deadly disease. It is the leading cause of death in young women with breast cancer. In fact, every day 108 American women die from metastatic breast cancer. This is over 40,000 women each year and this number has held steady for the last 15 years. If a cure is not found soon, one day it will be me.

Billions of dollars are raised for breast cancer, but only 2% goes toward research to find a cure for metastatic breast cancer.  Most of the money raised is spent on awareness, early detection, and treatments for early stages of breast cancer. Early detection does not guarantee a cure, and successfully treating early-stage breast cancer does not mean that one never has to worry about cancer again. Metastatic breast cancer can occur many years after the patient’s original diagnosis and treatment.

Until a cure is found for metastatic breast cancer, no one with breast cancer can ever be certain that they are cured, even after both breasts have been removed and no cancer is detected following surgery. Our current technology cannot detect whether very tiny breast cancer stem cells have traveled to a new body part. These cancer cells sometimes begin growing after surgery, radiation, and chemotherapy have been completed. In fact, this will happen to about 30% of the women who were successfully treated for early stages of breast cancer. Months, years, or even decades later, they will develop stage 4 breast cancer and die. It is a possibility that no one wants to talk about.  It is the elephant in every breast cancer patient’s room.

Please help raise awareness and funds for metastatic breast cancer research by joining me in the Turning Challenge.  Let’s send a message to breast cancer fundraising operations to turn around and look at us Stage 4 patients; we deserve more than 2 percent.

I started the Turning Challenge as part of my work as a Hear My Voice Outreach volunteer for Living Beyond Breast Cancer. I knew I wanted my outreach project to combine a fun activity with my passion for raising funds for metastatic breast cancer and educating people about the disease.

The Turning Challenge can be fun for everyone: both dancers and non-dancers.  All that you have to do is post a video of spinning or rotating in some fashion.  It can be as simple as the Hokie Pokie or as difficult as 32 fouettes. You can hold a spinning object like a pinwheel or film your pet dog chasing his tail.  There are no rules!

Inspire, entertain, amuse – or just make us smile! Be creative!

Please use  #TheTurningChallenge and nominate three or more friends.  If you prefer not to complete the challenge, please make a donation to METAvivor where 100% of your donation will go to metastatic breast cancer research. Also, visit LBBC.ORG to learn more about metastatic breast cancer and resources available to people living with the disease. Share this information with people living with stage IV breast cancer.

Help make this a Turning Point for metastatic breast cancer research and resources.

Good, Confident and Sexy: Becoming Whole Again

Breast cancer can impact sex, intimacy and body image whether you’re single or in a relationship. In anticipation of our Twitter Chat on Wednesday, June 24, AnaOno Intimates Owner Dana Donofree blogs about her experience regaining confidence and embracing her desirability after treatment.

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I often compare myself to a broken doll. Not the kind that was so beloved, it was carried everywhere, slowly fading and falling into disrepair over time as if it were aging gracefully. More like the kind that was once beautiful, but its owner decided to take construction paper scissors and hack its hair down to oddly shaped tufts, to accidentally (or on purpose) break off a limb or two, scar the midsection with a Sharpie and leave it half bent and mutilated in in the corner of her closet.

Because that’s what breast cancer did to me. It took a perfectly acceptable woman and turned her into a shadow of herself, and when it is all said and done, it made her feel broken, ruined and rejected.

When I was first diagnosed, what was about to happen to my outward appearance wasn’t even on my mind. I thought I had it all together, the strength, the attitude, the “let’s do this.”

See, I was never terribly attached to my breasts. I never even really thought about them all that much. I was 27. My boobs were small, but perky. They hadn’t done anything hero-worthy like nourish a child. Their biggest accomplishment was being able to exist without a bra. Their greatest time to shine was on weekend party nights when they could hang out in a super low-cut blouse and up my va va voom quotient.

So, when the time came to go our very separate ways, my friends threw a “Ta-Ta to Dana’s Ta-Tas” party and they had one last night out on the town in the lowest plunging neckline I could find.

I was pretty flippant and casual about parting with my two of my lady parts. Friends and family took bets on which of my surgeons, Dr. McDreamy and Dr. Hottie, was the better catch. I joked that they would be the last to ever cop a feel of my original breasts.

I thought I was going to be just fine afterward. That it wouldn’t faze me in the least.

But, I never could have prepared myself for what it felt like, both physically and mentally, when I woke from surgery. For something I felt I was completely comfortable with and ready for, losing them, my breasts, shook my world.

I took off the bandages, and saw this alien staring back at me in the mirror. I was mutilated. I was swollen. My scars were their own entity  purple and protruding like someone had chainsawed me up and stapled me back together.

It is not at all what I had imagined. Where was this “We are replacing your boobs with ones just like them so you can feel ‘normal’?” I hadn’t expected to look like a badly-repaired Lego. I expected to kinda come out looking more implanty-boob-job like. This body was the farthest cry from normal I could have ever imagined. Continue reading

The Art of Sharing (or Not)

Amy Wu is a panelist for our Breast Cancer 360: Mapping the Future for Young Women With Breast Cancer, taking place Saturday, June 13 and offered through FREE Web stream. In this piece, Amy writes about sharing her breast cancer experience with family and friends and how she coped with their reactions.

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When bad things happen most folks either retreat or share. I am of the latter. I tend to share.

When life throws its lemons I pick up the phone and call my constellation of close friends and family. Bad hair day. Stressful work day. Bad commute. I will share on the phone, by text, or on Facebook.

And then something interesting happened. In the wake of being diagnosed with breast cancer in May 2013, I clammed up. I shared just enough of the bad news with immediate family out of necessity and then retreated. I just wanted to be left alone and even deactivated my Facebook account.

Beyond the initial shock I swiftly started to share again. I shared my story with the local newspaper. I shared with my friends. I shared my story on social media. I shared with colleagues. I shared with my 93-year-old grandmother who insisted on knowing what was going on. And I shared with my then fiancée. I didn’t just text or email. I picked up the phone and shared. I shared in person sometimes over coffee or an adult beverage. In retrospect I’m not certain as to why I shared so swiftly and vastly. I just know that I shared my story with almost everyone I encountered.

What I was not prepared for the reactions I received or didn’t receive. This is one of the unspoken challenges of being a young woman diagnosed with cancer. No one expects that the news would come from someone so well, young.

“No way, you’re so young, it doesn’t make sense,” a lot of friends would say. I’d shrug. Yeah, well. Oh well. Continue reading

Embracing Community and Participating in Yoga on the Steps

FullSizeRenderMarisa Gefen, MD is a 35-year-old physician and mother who has now added “patient” to her resume. She was diagnosed last April with ER/PR-positive breast cancer. Marisa reflects on how this journey led her to Living Beyond Breast Cancer and Yoga on the Steps.

After my shocking diagnosis in April 2014, I immediately went into survival mode. I hyper-fixated on getting through the current phase of treatment and onto the next phase. It was a whirlwind of getting a port, quickly followed by starting chemo, managing chemo side effects, finishing chemo, then on to a 9-hour surgery comprised of a double mastectomy, sentinel node biopsy, and free flap breast reconstruction. Soon, I was home recovering from this massive surgery and then stumbling into radiation daily for 5 weeks.

Then, I woke up one morning in January and suddenly realized that active treatment was all over. Now what? In this frightening journey, I was missing a sense of community of others with similar experiences, both past and present. The endless support from my husband, family, and friends, did not fill the entire void.

I heard about Living Beyond Breast Cancer right after my diagnosis. When I happened to be looking for local office space, my tour of commercial real estate ironically took me right through LBBC headquarters, which I toured. The office was warm and full of young, vibrant people. I wasn’t ready at that moment to reach out.

I was reintroduced to LBBC in December, when I tried frantically to interpret the results of the Suppression of Ovarian Function Trial (SOFT). This major trial will likely change the standard of care for me and other women under age 35 with ER-positive breast cancer, by recommending induction of early menopause (as if we haven’t been through enough) and possibly switching from tamoxifen to an aromatase inhibitor. Continue reading

Discussing Fertility Preservation with Young Patients Diagnosed with Cancer

Kristin N. Smith, a patient navigator at Robert H. Lurie Comprehensive Cancer Center, blogs about some fertility options healthcare providers could discuss with young patients diagnosed with breast cancer. Ms. Smith is the speaker for our webinar, Fertility and Breast Cancer: Educational Opportunities and Preservation Options. Register now for this program and discover more about how you can help young women learn about fertility after breast cancer.

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Providing care to young cancer patients who wish to pursue fertility preservation prior to initiating cancer treatment requires the collaborative efforts of oncologists, reproductive endocrinologists, nurses and many more within a short time frame.

Being able to effectively communicate and educate patients about the potential gonadotoxicity of cancer therapy, or damage to reproductive organs caused by treatment, and the available options for fertility preservation is essential to improve patient care. Many of the treatments we use to treat cancer for adolescent and young adult (AYA) women can decrease the likelihood of having biological children. High dose alkylating agents and pelvic radiation can destroy the ovarian reserve; radiation to the brain can harm the way the brain communicates to the gonads and surgical resection of reproductive organs can all make family building more difficult for patients.  Continue reading

Addressing a Gap Identified in Our Needs Assessment of Young Women: Discussing Fertility After Breast Cancer

Whether treatment will affect their ability to have children in the future is one of the most common worries among young women who are diagnosed with breast cancer. LBBC’s Arin Ahlum Hanson, MPH, CHES, manager of the Young Women’s Initiative and YWI Program Coordinator Ingrid Mapanao blog about this gap, in anticipation of an upcoming healthcare provider webinar on fertility and breast cancer. 

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LBBC’s Arin Ahlum Hanson, manager of the Young Women’s Initiative (left) and YWI Program Coordinator Ingrid Mapanao (right).

The National Comprehensive Cancer Network guidelines recommend all premenopausal women diagnosed with breast cancer be informed about the potential impacts of treatment on their fertility and asked if they would like to have future pregnancies. LBBC’s national needs assessment of over 1,500 young women affected by breast cancer found that only half of the young women surveyed reported discussing fertility issues with their healthcare providers. Of those women who did discuss fertility impacts with their providers, the majority of those women initiated this important discussion with their healthcare providers rather than having their healthcare providers bring up the subject.

LBBC is working to close this communication gap by educating healthcare providers through an upcoming webinar. Healthcare providers participating in this webinar, Fertility and Breast Cancer: Educational Opportunities and Preservation Options , will learn about fertility preservation options available for young women and how breast cancer treatments impact fertility. The webinar will be held on Wednesday, March 18 from noon-1pm ET and the guest presenter will be Kristin N. Smith, a fertility preservation patient navigator at the Comprehensive Cancer Center of Northwestern University in Chicago.

Free CEUs will be given to the first 150 nurses and 150 social workers who register!

Our hope is that many healthcare providers join our Young Women’s Initiative’s commitment to strengthen and expand programs for young women affected by breast cancer. Healthcare providers can do this by participating in the webinar. If you’re a healthcare provider, register now to learn the roles you can take to educate your young patients about their fertility options.