Holiday Gift Guide: 10 Thoughtful Gifts for Young Women In Treatment

The holidays can be a particularly stressful time for young women affected by breast cancer. While you’re searching for the perfect gifts this holiday season, you may be wondering what to give a friend or loved one who is going through treatment and could use a little extra cheer. Our survivor staff members helped us handpick a list of thoughtful gift suggestions. Add your ideas to this holiday gift guide in the comments below!

 

1. Curated Gift Boxes

Treatmint Box's Hope Shines Box

Source: Treatmint Box

If we put beauty and inspiration into one box, it would be shipped by Treatmint Box or Fighting Pretty. Both gift box services offer a variety of comfort, entertainment and inspirational items specifically curated for cancer fighters. Examples of some of the items include soaps, journals, scarves and mugs.

 

2. Motivational Jewelry

Our Jammin Hammer Jewelry Bracelet Can Be Found in the YSC Store

Show your support with some sparkle. Thoughtful mantra jewelry will let your loved one know that she is fierce, she is loved and that she can get through this. Use the code YSCBRACELET for 15% off any of our bracelets through December 31.

 

3. Intimates and Comfy Apparel Designed for and by Survivors

 

Kitt Allan's Wear Your Courage TeeA woman facing breast cancer will experience many changes to her body as a result of treatment. Intimates and apparel that not only support, but accentuate each survivor’s beauty are AnaOno and Kitt Allan’s specialty. We love the idea of giving something beautiful from these survivor-designed lines.

Young Women Modeling Ana Ono's bras

 

 

 

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Both companies also do their part to give back, donating a portion of their proceeds to YSC. Check out AnaOno’s site and use code LOVEYSC for 15% off your purchase through December 31. Kitt Allan is offering 10% off and doubling their donation to YSC with code YSCGIVE2X.

 

4. e-Readers

Nothing passes the time like a quiet space and a good book. e-Readers like the Kindle e-Reader make great gifts. For some women, reading can be challenging during treatment, so an Audible Subscription is a nice alternative.

 

5. Cozy Fleece Blanket

Our YSC Fleece Blanket is a perfect holiday gift

Give the gift of comfort with this cozy fleece blanket from the YSC Shop. This full-body blanket is super soft and perfect for keeping warm on treatment days and cold winter nights. Use the code YSCFLEECE for a 15% discount through December 31. Plus, proceeds from all items in our shop benefit our programs and services for young women affected by breast cancer.

 

6. Spa Day

Spa Day

What better way to show your affection than planning a day of peace and pampering? SpaFinder is a great tool to search for special deals and offers for spas, resorts and wellness centers in your area. You can also print or email personalized holiday-themed gift certificates.

 

7. Chemical-free Beauty Products

Pristine Beauty Saucy Siren Gift Set

Our partner, Pristine Beauty, is an oncology approved, cruelty free, natural cosmetics line with a fabulous Old Hollywood feel. Started by a young breast cancer survivor, Pristine Beauty donates a portion of their proceeds back to YSC. The Saucy Siren Gift Set would be excellent for a DIY spa day and pampering at home. Use the code 20PCNT3012 for 20% off any purchase from December 1-30.

 

8. Pillows and Transport Cushions

survivormoda

If your friend or loved one is currently in treatment, she may need some extra comfort on the go. Surgery, chemotherapy and other treatments can leave you sore and uncomfortable. Handmade mastectomy pillows like these ones found on Etsy and seat belt cushions like this one from Survivor Moda (made by a YSC staffer and young survivor) are wonderful gifts to provide extra relief and support.

 

9. Adult Coloring Books

Coloring and other creative outlets are great forms of stress relief

Adult coloring books have become a very popular meditative tool. Lots of people find the act of coloring to be a soothing way to distract themselves from the stresses of everyday life. Coloring books come in a wide assortment of themes, from elaborate and whimsical, like Johanna Basford’s Secret Garden, to adult-only humor, like Sasha O’Hara’s Chill the F*ck Out.

 

10. Arrange a Meal Service


 Holiday Gift Guide for Breast Cancer Survivors

Magnolia Meals and Mealtrain are meal delivery programs that let co-survivors schedule and prepare meals for a young woman currently in, or freshly out of, treatment, something that can be especially welcome during the hectic holidays. These shareable calendars allow loved ones to not only support, but build a community around the survivor in their lives. Meal Train Plus is an option for families that need a bit more support, offering housecleaning and childcare services.

 

11. Quality Time and Thoughtful Attention

Holiday Gift Guide

Fancy tech gifts and extravagant treats are great for showing someone that they’re in your thoughts, but the best way to let someone know how deeply you care for them is to spend some good ol’ quality time. You can:

– Be a sounding board, listening without judgment.
– Support their expressive art. Read their blog, subscribe to their feed, watch their videos and share it with friends and loved ones.
– Start watching a new TV show or begin a new activity and stay updated together.
– Find or help build a circle of support for them. We offer great ways for young women to connect through our Face 2 Face groups, SurvivorLink and Discussion Boards.
– Continue to check on them even after treatment ends.

Holiday Gift Guide

 

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Categories: Uncategorized

8 Tips for a Stress-free Holiday Season

Whether you’re currently going through treatment, recently finished treatment, you’re a long-term survivor, or living with metastatic breast cancer, let us think about the expectations and unique stressors you may face this holiday season. Let us appreciate the importance of self-love and understanding, because your health and well-being are more important than a picture perfect holiday.

To help cope with holiday-induced stress, we compiled a list of 7 tips and resources to help you have a low stress holiday. Share your favorites, and let us know what you do to reduce holiday stress in the comments below.

 

Stress-Free Holiday Tip #1: Me Time Is Even More Important This Time of Year

Paying attention to how you feel is even more important this time of year. Even if it’s for 30 minutes, block out time for yourself to address your needs.

 

Stress Free Holiday Tip #2: Being Strong Is Asking For Help

Your loved ones care about you and want to be there for you. Don’t feel like you have to do everything yourself. Build your circle of support with family and friends, and if they offer to help, let them. Supportive websites like Lotsa Helping Hands, Take Them a Meal and Care Pages make it easy to schedule meals, assist with daily chores and errands, organize rides to/from treatment, and help keep people updated.

Are you a co-survivor? Here are 15 ways you can help your loved one diagnosed with breast cancer.

If you’re having difficulty discussing certain topics or feelings with loved ones, don’t feel like you need to keep what you’re feeling in. Seek professional help. Healthcare providers, such as social workers or psychologists, make great objective listeners and can help you cope. Learn more about the relationship between mental health and breast cancer and what role psychological treatment can play in your breast cancer treatment plan.

Stress-Free Holiday Tip #3: It's Okay To Say No

With the holiday season often comes a seemingly countless number of invitations for holiday parties and events. Don’t feel like you have to participate in everything or accept every invitation you receive. Say yes to the people and events that are important to you, and remember, you are more important than any party.

Stress Free Holiday Tip #4: Focus On One Thing At A Time

Studies have shown that multitasking is not as effective as originally thought and can increase stress levels. Slow down, and try to focus on one thing at a time. Remember to stay flexible. Don’t feel guilty if you can’t get everything done or you need to adjust your routine/schedule.

Stress-Free Tip #5: Find What Brings You Joy

A breast cancer diagnosis often comes with a mix of emotions for the person diagnosed (and their co-survivors). It’s important to find a way to tap into what you’re feeling and find an activity that allows you to express emotions that may be difficult to convey. YSC Summit 2016 Speaker, Ali Schaffer, LCSW discussed letting your creativity flow by connecting with your inner creative goddess. For some, writing, dance or other art therapy helps them combat stress, while others find solace in spending time outdoors or getting active. Below is a small list of activities to help you find one that brings you comfort and joy.

Get Creative: use writing, dance, theater, photography or painting/drawing as art therapy to help you reduce stress or distract you from an upcoming medical treatment or visit to the doctor.

Get Active: exercise is a great way to lower stress levels and deal with menopausal changes and/or medication side effects. A short walk around the block or a quiet yoga session can sometimes do the trick. Be sure to talk to your doctor about the best exercises for you.

Get Outside: nature walks, listening to the ocean or enjoying the crisp fall air can be therapeutic and help increase relaxation.

Stress Free Holiday Tip #6: Know Your Holiday Stress-Points

Take a moment to think about your holiday stress points and how you want to handle them. Write down a list of topics or questions that have upset you in the past, and brainstorm responses that will help minimize holiday tension or awkward moments. Discuss your concerns with your co-survivors, and practice your responses. Here’s a list of questions to help you get started:

 – What topics do I not want to discuss?

 – What questions do I not want to answer?

 – Are there certain family members or friends who have upset me in the past?

 – Why did the conversation upset me? What questions did they ask?

Stress-Free Holiday Tip #7: Be Present

It can be easy to get caught up in holiday festivities and expectations for grand gestures or gifts. Allie Vreeland reminded us of the importance of living the life you want and focusing on the now. Try to be present in the moment, and use this holiday season to focus on favorite family traditions and to create special memories with your loved ones.

For young women living with metastatic breast cancer, these favorite traditions and special experiences can help you create a unique legacy for you and your loved ones. Join us at our 2017 National Summit for Leaving a Legacy, a half-day retreat for young women living with metastatic breast cancer and their co-survivors.

 

Stress-Free Holiday Tip #8: You are Never Alone

If you’re feeling overwhelmed and alone this holiday season, remember, YSC is a community, and we’re always here to help. If you haven’t done so already, now is the perfect opportunity to tap into our resources and find the support you need.
 – Want to talk with someone 1:1? Try our peer mentoring program, SurvivorLink.
 – Want to meet in-person with other young survivors? See if there is a Face 2 Face Network near you or learn how you can start your own today!
 – Want to chat online? Our Online Video Support Groups meet once a month.
 – Want a specific question answered? Our Discussion Boards and Private Facebook Group offer a wide range of conversations about hot topics and issues.

 

 

 

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Categories: Uncategorized

4 Ways To Be A Breast Cancer Advocate Today!

With all the changes happening in Washington DC, you might be concerned about the possible impact on health insurance coverage of cancer patients, especially around pre-existing conditions. We understand your concerns. We will vigilantly monitor the situation around the Affordable Care Act and strive to keep you updated with accurate information. In the meantime, here are some ways you can take action to be your own best advocate.

Sign Our #12Ktoomany petition. A signature can make a difference! Whether you are a young woman diagnosed with breast cancer or care about putting a stop to this disease, show your support by signing today. Please share the link with your friends and family and ask them to sign! We’ll be presenting the signatures to the new administration in January.

Share your story. If you’re comfortable with sharing your story, National Coalition for Cancer Survivorship is collecting stories from cancer survivors who have benefited from the Affordable Care Act.

Contact your representatives. Find your local representative. Call their office to voice your concerns or share the link to the 12K Too Many petition on social media.

Connect with Us. You are not alone! We have support and resources for young women in need. Contact your YSC Regional Field Manager, find your local Face 2 Face Network for young survivors or connect online through our  Online Video Support Groups and private Facebook page.

 

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YSC Regional Field Managers:

Midwest: Medha Sutliff msutliff@youngsurvival.org

Northeast : Grace Cook, gcook@youngsurvival.org  

South: Christina Hill, chill@youngsurvival.org   

West : Mary Ajango, majango@youngsurvival.org  

 

 

 

 

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Categories: News & Updates

Exciting Updates from Our Adoption Story

Hi again everyone! For those that aren’t aware, I’ve been sharing updates and information on mine and my husband’s journey with adoption.  As a young woman affected by breast cancer, I wanted to share our journey to becoming parents.

Grace and Barnaby share their adoption story after breast cancer

Grace and Barnaby

Last time we’d just been approved to be adoptive parents, which was a huge step. Since
then we’ve been dealing with the emotional stage of the process. I say that because, up until now, it’s been about paperwork and admin. I found out my husband is great at this…and I thought I was organized! Since then we’ve started the process of talking with birth mothers. As I explained in my previous blog, before embarking on this, we had training from a great specialist, who is experienced at talking with birth mothers. I would highly recommend this because she taught me ways to communicate I hadn’t even thought of. Ultimately, this is about the birth mother investigating you, not the other way around. She needs to feel comfortable chatting about who you are, your background and whether she feels you’re right to take on the enormous responsibility, and honor, of parenting their baby. I can’t think of a more emotionally charged situation, so please know it’s completely normal to feel nervous and overwhelmed. It helped me to remember no-one is more scared than her.

This stage is different for everyone because, let’s face it, we’re all unique. I can tell you my experiences, but it will always be different for you. What I have learned is the smallest things can peak a birth mother’s interest. Friends of ours have just adopted a baby boy and his birth mother saw a Star Wars poster in the background of one of their pictures, so she called! For us, we’re currently speaking with a birth mom who loved that we live in Brooklyn. It’s always been her dream to see New York and she wants that for her child.  

I don’t have a ton of links and useful resources to share this time, but that’s probably because it’s an intense time for our small family. We’re relying on each other for support but also taking any advice given. We’ve joined a ton of Facebook groups and also joined Baby Center Community. Say yes to hearing any experiences and use the platforms that are available to you.

Alongside the conversations with birth mothers, there’s always the knowledge that things may not work out. Adoption is a complex layer of emotions and experiences. While it may seem like a good outcome is on the horizon, we’re being sure to protect ourselves, but also know we’ll be parents eventually. I’m sure there will be disappointments, but as long as you have the support infrastructure you need, you’ll always have someone to help you get through it. I hope I can play a small part in that!

 


Grace FoxtonYSC’s Northeast Regional Field Manager, has agreed to share her adoption journey with us because as a young woman affected by breast cancer, she hopes her experience will help other young women with the logistics of the adoption process. Check out her first post Our Decision to Adopt and her post with next step tips for those interested in adoption. 

This Saturday is National Adoption Day, a collective, national effort to raise awareness of more than 100,000 children in foster care waiting for permanent and loving families. For more adoption resources, check out AdoptUSKids and adoption.com.

 

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Categories: Resources & Support

Figuring Out the Why and Using It to Drive Your Passion

I vividly recall sitting on the floor of my shower with water and tears streaming down my face trying to figure it all out. I could not stop thinking . . . Why? Why me? What did I do wrong?

On July 28, 2005, my son’s first birthday, I was diagnosed with breast cancer at the age of thirty-three. My life was flashing before my eyes as I struggled with the question if I was ready to die or not. It did not take me long to conclude I was not ready to die. I had a young child to live for! I knew I had to muster up the strength to get out of the shower and take care of my family, but nine months of chemotherapy and a year of surgeries to first remove my breasts, and then reconstruct them, left me weak, bald and hopeless.

After all that, my doctors told me I still had up to 40% chance of a recurrence. How could that possibly be? After everything I had done to fight my cancer over the past two years? I knew one thing for sure: I had to stay alive for my son, so I resolved to get up off the shower floor and do something about it.

Using A Breast Cancer Diagnosis To Drive Passion

Daily Green's Founder turned to plant-based diet after breast cancer diagnosis

I decided to investigate diet because I heard that food could have powerful healing attributes. I read everything I could get my hands on, and my journey led me to understand that a plant-based diet filled with raw vegetables could not only help detox my body from my breast cancer treatment, but it could potentially reduce my chances of a recurrence of my breast cancer. I was excited to find something that would finally be under my control. I found the most efficient way to consume raw veggies was to juice them, so I ordered my first juicer and started making a green juice every day. The effects were immediate and undeniable. I started to regain my energy, my hair quickly grew back, and my skin and eyes started to glow. I was blown away and determined that the right thing for me was to move to a fully plant-based diet.

It took several years of slowly eliminating animal protein from my diet, but when I finally got there, the results were amazing. Ten years later, I am still vegan and follow a plant-based diet, and it enables me to be the best version of myself each and every day.

I was so enthusiastic about my newfound fountain of youth that I could not keep it to myself. I started to share the benefits of a plant-based diet and drinking daily green juice with my friends and family. Over the years I had many converts, but after several months most would conclude that it was too difficult to use their juicer on a daily basis. I realized if I was going to get folks to stick to drinking a daily green juice, I was going to have to make it for them.

 

Turning Passion Into a Business

So after practicing corporate law for 18 years, I decided to set out to research the technology needed to produce cold-pressed green juice on a massive scale. My mission and vision was to get a daily green juice into the hands of every American. In December 2012, with the help of my cousin, I made 60 bottles of green juice, and early the next morning I took it to the farmer’s market. It was a massive hit, and Daily Greens was born. Today, just three and a half years later, Daily Greens is nationally distributed in over 3,000 retail outlets.

Daily Greens Founder Shauna Martin discusses turning Breast Cancer Diagnosis To Drive Passion

I am so proud of everything that Daily Greens has accomplished, but I will not forget my roots and the struggle that lead me to this place. I will never forget the amazing services I received from Young Survival Coalition all those years ago. I was bald and still in treatment when I attended the YSC National Summit for the first time. I will never forget the feeling of walking into a room with 500+ other young women with breast cancer. I said to myself, “I am not alone”. Words can’t describe the overwhelming feeling of sisterhood and companionship I felt at that conference. 

When I started Daily Greens, I knew I wanted our mission to include raising money and awareness for YSC and other organizations that provide services to young women battling breast cancer. Since its inception, Daily Greens has donated a percent of our sales directly to Young Survival Coalition in support of their amazing mission to ensure no young women face breast cancer alone!

Eleven years later, I now know the answer to the ‘Why?’ I was meant to go on my breast cancer journey so that I could help bring a message of health and hope!

 


Join us in Oakland, CA for 3 inspiring days of learning and leave feeling empowered. Connect with other young survivors and co-survivors who understand what you’re going through and hear from expert speakers addressing the unique issues–like fear of recurrence, health wellness, medical and research updates, dating and relationships, and leaving a legacy–that young women with breast cancer face.

The Early Bird registration fee is $145 per person until January 8, 2017, and then $160 until March 3. Fee waivers and travel grants are available to those who qualify, and fundraising options are available to offset expenses.

About the Author

Shauna R. Martin is the Founder & CEO, Daily Greens and the creator of Daily Greens 4-day Cleanse. In January of this year, she joined YSC’s board of directors.

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Breast Cancer Awareness Does Not End Today

Although today marks the end of Breast Cancer Awareness Month, breast cancer awareness does not end today. We must continue to take action year-round to ensure that young women stop dying from this disease.

This month we focused on the realities of breast cancer. Breast cancer is the most common cancer in women ages 15-39 and young women face greater mortality rates and an increased risk of metastatic (or stage IV) recurrence.

With the help of Spencer Kohn and Zach Jopling, we created our #12Ktoomany photo series where breast cancer survivors confront their struggles. We’re grateful for the young women who opened up about how their diagnosis changed their day-to-day lives and what the word ‘survivor’ means to them. Thank you to Spencer and Zach for capturing and creating beautiful imagesand a video that mirrors the reflection of breast cancer’s collateral damage on these young women.

Mercedes from our #12Ktoomany photo series for Breast Cancer Awareness Month

Allie V from our #12Ktoomany photo series. Photo by Spencer Kohn

We welcomed guest bloggers to discuss their realities living with metastatic breast cancer. Allie discussed how she turned her metastatic diagnosis into an opportunity to focus on today and live the life she wants. Melissa discussed the hopes and fears she silently carries each day. Lara helped us understand the importance of living life over cancer and not only celebrating the ‘happy stories’ but telling the whole story. Thank you to Michelle for reminding us that we must continue to push for research and action because the young women who are no longer with us deserved more. The young women living with metastatic breast cancer deserve more, and it’s on us to be the driving force to demand action.

Ways to Continue Breast Cancer Awareness

Continue the conversation about the signs and risk factors of breast cancer–especially in young women. Help your family and friends understand how they can decrease their risk of breast cancer. Download and share our Breast Health and You Guide.

Join us in California for our West Regional Symposium this Saturday in Long Beach, CA. Online registration is now closed, but you can still register on-site. Registration for our 2017 Summit in Oakland, CA will open this week. Sign up to get notified about registration and other Summit details as they become available.

Advocate for the 12,000 young women who will be diagnosed with breast cancer this year. Our goal is to collect 12,000 signatures by December 31 and present our #12Ktoomany petition to the new President in January. We are still 8,400 signatures away from our goal.

Volunteer and become a peer mentor for other young women affected by breast cancer. Our SurvivorLink program helps young women find the priceless support, wisdom and understanding that they need. Sign up to get updates about local volunteer opportunities and how you can get involved as an Ignite volunteer.

Drive metastatic research forward by joining the Metastatic Breast Cancer Project, a nationwide project for patients, doctors, and scientists that collects tumor samples and patient medical for researchers to analyze and ultimately leads to a better understanding of metastatic breast cancer. We are proud to an advocacy partner and help MBC Project drive research and therapy development forward.

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Breast Cancer Symptoms in Young Women and Your Breast Health

Unless you have been living under a rock, you are likely very aware of breast cancer. But what you might not know is that young women CAN and DO get breast cancer. I always thought breast cancer was a disease that only impacted women my mother or grandmothers age. I had no idea that the disease also affected young women until my own diagnosis at age 27, while pregnant with my first child.

Young survivors holding signs with their age at diagnosis.

Young survivors holding signs with their age at diagnosis.

What you might now know…

Breast cancer is the most common cancer in women ages 15 to 39. And more than 12,000 cases of breast cancer are diagnosed in women under age 40 every year in the U.S. While breast cancer can not be prevented, being an informed and empowered advocate can go a long way for your health. Here is what you need to know:

 

Breast Cancer Risk Factors

Risk factors include anything that increases your chance of developing breast cancer. There are some risk factors you can control and others you cannot.

 

Our Breast Health and You booklet can help you understand breast health, breast cancer symptoms and risks

Download our Breast Health and You guide

Risk factors you CANNOT control

  • – The fact that you are a woman
  • – Getting older
  • – Family history of breast cancer
  • – Having breast cancer in the past
  • – Chest exposure to radiation when you were a child or teenager
  • – First menstrual period earlier than age 12

 

Risk factors that you CAN control

  • – Maintain a healthy weight
  • – Limit alcohol use
  • – Exercise regularly
  • – Have your first child before age 30, if possible
  • – Breastfeed, if possible

TIP: Talk to your family about a history of breast or other cancers on both sides of your family. Use the handy family tree in YSC’s Breast Health & You Guide.

 

Signs & Symptoms of Breast Cancer

It is important to understand that you are looking for more than just a lump. Get familiar with your breasts and aware of the signs and symptoms of breast cancer.  Nearly 80% of young women diagnosed with breast cancer find their abnormality themselves.  Tell your doctor right away if you notice any changes in your breasts. 

  • – A lump or unusual thickening in the breast or underarm area
  • – A change in color or rash on the skin of the breast
  • – Unusual nipple discharge
  • – Swelling of all or part of the breast
  • – A change in size or shape of the breast
  • – Itchy, sore or scaling of the nipple
  • – Dimpling on breast skin or nipple turning inward
  • – Breast or nipple pain that does not go away

If you experience any of the above symptoms, consult your physician. If your concern is not taken seriously, you may have to insist on discussing whether further testing is appropriate. 

What Can You Do?

Breast cancer cannot be prevented, but there are ways you can achieve an overall healthy lifestyle in mind, body and spirit to decrease your risk.

  • – Eat balanced meals with many fruits and vegetables.
  • – Drink plenty of water.
  • – Get regular exercise.*
  • – Support bone health through physical activity* and appropriate intake of vitamin D and calcium.
  • – Limit your alcohol use to no more than one glass a day.
  • – Get enough rest.
  • – Reduce stress.
  • – Pray, meditate or just find private time for yourself.
  • – Make time for enjoyable and fun activities.
  • – Do not smoke.

*Check with your doctor before starting any physical activities.

TIP: Check your local community or recreation center for free or low-cost fitness, dance or yoga classes.


For additional facts, how to talk to your doctor and more, download or order YSC’s free Breast Health and You Guide.

Not sure how to help someone facing breast cancer? Explore 15 ways you can help.

We urge you to sign our #12Ktoomany petition now.

Help us reach our goal–to collect 12,000 signatures to represent the 12,000 young women who will be diagnosed under 40 this year in the US. Because we need to stop losing the women we love.

 

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Categories: Resources & Support

Turning the Corner

Changing My Identity

In December 2006, I was diagnosed with Stage 3 breast cancer at the age of 38. At this point in my life, my identity was wife, mother of three boys–ages 3, 2, and 11 months–and lecturer of occupational therapy. In a moment, my identity changed to breast cancer patient. My personal journey through treatment was arduous with life threatening surgical complications, overwhelming due to chemotherapy side effects and anxiety-filled “waiting for the other shoe to drop.”

As an occupational therapist, I had helped many people reconstruct their lives after illness and traumatic accidents. Now, I found myself having to reconstruct my own life. I was adrift and needed to figure out my roles of mom, wife, breast cancer survivor, occupational therapist and lecturer. My mother-in-law, offered some sage advice–that one day I would wake up and have turned the corner. Now I’ll be honest here, I’m a little impatient and was constantly looking for the corner.

Finding That Corner
me-and-the-boys-2006

Ann Marie hanging out with her two boys while in treatment.

While in treatment, I attended the YSC National Summit in Washington D.C. One session focused on advocacy and the National Breast Cancer Coalition’s work. Now this was something I could get into! I was able to see the direct relationship between advocacy, research and my own treatment. It was clear there was a lot more work to be done. In my mind, I was trying to put together how all my roles interconnected.

I quickly realized that occupational therapy should be included in cancer treatment. For example, I was told not to lift more than 30 pounds, yet no one offered me any advice or strategies of how to take care of a 30+ pound toddler. This is something I would address with a client if they couldn’t take care of their child. I also thought about energy conservation and lymphedema prevention and role performance.  As I bumbled along in a post treatment haze, I was approached by some OT graduate students that wanted to do their research project related to breast cancer. We decided to look at how roles change for women with breast cancer. Things were beginning to mesh for me and I saw that I could contribute to research on survivorship using my skills as an occupational therapist.

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Ann Marie presenting research at the Advanced Breast Cancer Consensus Conference in Lisbon Portugal in 2013.

Back To School

I attended NBCC’s Project Lead in 2010. During lunch, I discussed my work as an occupational therapist and spoke of my interest in survivorship research. I was encouraged to look at cognition and how it changes related to breast cancer treatment, and how it impacts everyday life. As I reassessed where I was at, I decided that it was time to go back to school for a PhD so I could do better research. I enrolled at Virginia Commonwealth University in the Health Related Sciences-Occupational Therapy Doctoral Program. Between attending boys soccer and little league games and helping with homework– it was the support of my family and work colleagues who helped me balance life and being a student.

Where It All Lead

Now I am a doctoral candidate. I’m currently researching the impact of breast cancer treatment on cognition and functional performance. Many a breast cancer survivor has complaints of cognitive changes, but we really haven’t quantified how much this impacts our abilities to do our everyday life activities. Occupational therapy has been named a first line intervention for cancer associated cognitive impairment by the National Comprehensive Cancer Network. So there is a need within my profession to learn more about the cognitive and functional changes after cancer treatment. My cancer journey hasn’t been mapped out well, but I have turned the corner. I’m now able to put together the meaningful things in my life.


The Impact of Chemotherapy and Radiotherapy for Breast Cancer on Cognition and Functional Performance

Ann Marie is currently enrolling individuals, who are Stage 1-3, nearing the completion of treatment–chemotherapy only, radiation only or chemotherapy and radiation. For more information about the study, click here

 

 

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Metastatic Research Roundup

All week long, we’ve focused on metastatic breast cancer–what it’s like to live with it and how we need to come together to strengthen the breast cancer community. Today, we’re focusing on where we are in understanding MBC and how YOU can support the many organizations and researchers working to expand treatment options and find a way to end MBC all together.

Metastatic Partners

Help Keep Me In The Picture – YSC is proud to be part of the Metastatic Breast Cancer Alliance. Sign their petition to ensure the CDC and SEER have the funding to collect accurate statistics for those with metastatic breast cancer.

A Story Half Told – An initiative by Pfizer in partnership with advocates, patients and healthcare professionals that aims to elevate public understanding of metastatic breast cancer, dispel misperceptions, combat stigma and expand the breast cancer conversation to be more inclusive of metastatic breast cancer.

Metastatic Research Opportunities

Metastatic Breast Cancer Project – Join this nationwide movement of patients, doctors and scientists by sharing your tumor samples so that we can speed the development of future therapies.

Metastatic Trial Search – YSC is proud to partner on this first-ever clinical trial search engine for those with metastatic breast cancer.

The METRIC Study – Recruiting patients with metastatic triple negative breast cancer which over expresses the gpNMB protein to test the effectiveness of a new antibody drug conjugate (a targeted means of giving chemo) called CDX-011. 

Researcher at Towson University Department of Family Studies is looking for a few women, ages 18-40, diagnosed with metastatic breast cancer, who live anywhere in the US and would be willing to participate in a phone or in-person interview. This pilot study is looking at the social support needs of young women with metastatic breast cancer and will be the basis for a larger, future, study. If interested, please contact Professor Ginter at aginter@towson.edu.

Metastatic Research Articles

How a small implanted device could help limit metastatic breast cancer – A study team from University of Michigan found that a “scaffold” made of biodegradable FDA-approved materials, implanted under the skin, captured metastatic breast cancer cells and slowed disease progression in mice. Mice with the scaffold implanted lived longer. It is thought that the scaffold may enable earlier detection of metastatic disease and may improve outcomes because cancer cells “caught” can be examined to determine best treatment. The research still needs to be proven in humans.

70-Gene Signature Could Help Early-Stage Breast Cancer Patients Avoid Chemotherapy – A recent study in the New England Journal of Medicine examined the use of the MammaPrint 70-gene signature test in patients at high clinical risk of breast cancer recurrence but low genomic risk. These patients were randomized to chemo versus no chemo and no difference was found in distant metastasis. If the test was used in all women at high clinical risk, it was estimated that 46% could safely avoid chemo.

 

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Because We Need to Stop Losing the Women We Love

Another Phone Call

A couple weeks ago, on the eve of “Pinktober,” a fellow breast cancer survivor called me. I immediately knew from the tone of Kim’s voice that something was very wrong. It was–our friend Sioned Davies had just passed away from metastatic breast cancer at the age of 49. Sadly, this was not the first time that Kim and I had had a similar conversation and we both know it won’t be our last.

An estimated 40,000 women will die of metastatic breast cancer in the United States each year and over 1,000 of them will be under age 40. A JAMA article claims that the incidence of metastatic breast cancer, diagnosed “de novo” (at time of original diagnosis) is increasing in women under 40.  Young women are more likely to get the most aggressive forms of breast cancer and more likely to die (compared to older women) in the supposedly less aggressive (ER+) form of the disease. (For more info)

What is metastatic breast cancer (MBC)?  

MBC is breast cancer that has spread beyond the breast to other parts of the body–typically the bones, liver, lungs or brain, although it can also appear in other spots. Called “stage IV” breast cancer, it is now deemed incurable, and treatment focuses on controlling the cancer as long as possible. Women with MBC are constantly in treatment and when their current treatment stops working, they move to another one, then another, then another. Some women with MBC can live a long time with the disease, even over 10 years. However, the average length of time between MBC diagnosis and death is under 3 years. For Sioned, it was three years.

Anyone can be diagnosed with MBC.  

There is simply no cure for breast cancer and anyone who tells you they are “cured” is engaging in wishful thinking. Even if you were initially diagnosed with stage 0, I, II or III breast cancer it doesn’t matter–it can still recur and become stage IV. Catching your breast cancer “early,” does not guarantee that you will escape an MBC diagnosis. Even if you are five years, ten years or more years out from your original breast cancer diagnosis, it can still recur and be stage IV. Sioned had been diagnosed with stage I breast cancer, treated and apparently disease-free for 6 years when diagnosed with MBC.

Women diagnosed with MBC did NOTHING “wrong.”

Deanna called Kim and I to join her at the hospital where Sioned was awaiting test results.  We three were in the hospital with Sioned when the doctors told her that she had MBC. Her first reaction was to question what she had done “wrong” to receive such a diagnosis. And she’s not alone — some people think that if you were diagnosed with MBC, you must have done something “wrong.”  You ate the wrong foods, you didn’t exercise enough, or you must have done the wrong treatment years ago. But, that is just bunk. No one knows what causes MBC or how to prevent it. Some of the healthiest people I know, who exercise and eat well, are diagnosed with MBC. It does not discriminate.

MBC is isolating.

Being diagnosed with breast cancer at a young age is isolating enough, and a diagnosis of MBC at a young age is even more so. Sioned turned to other women living with MBC and found a wealth of information and support–way beyond what those of us with early stage disease could provide or understand.  These connections were crucial for her and while she initially was the one seeking support, her role evolved to one where she was the supporter of others with MBC. YSC offers free Resources for MBC support including online video support groups, Face 2 Face networks, SurvivorLink, Online Community Boards, and the Metastatic Navigator.

allie-shaina

Shaina, diagnosed with MBC at 25, and Allie, diagnosed with MBC at 28.

Women with MBC need information…

To stay on top of their treatment and know what new options or clinical trials may be available to them. Metastatic Trial Search is a tool which enables them to quickly find applicable clinical trials. MBC Project is a research initiative that asks women with MBC to share their tumor specimens and information in a quest to speed research discoveries.  Throughout the project they will be provided regular updates and informed of any discoveries that their help enabled the MBC Project to make.

Women with MBC want to be heard.

Especially during October, the needs and issues of women living with MBC often get overlooked because what they have to say and the reality of their disease may not be pretty or pink. But they have a voice and need to be heard, to be understood, to make clear that the status quo is not working — we are still losing too many women to breast cancer.

You can take action.

Sign YSC’s #12Ktoomany petition that asks for dedicated research funding into breast cancer in young women, with 50% to be focused on MBC. You can also join METAvivor’s StageIVStampede in Washington DC as they stage a Die-In and visit their Congressional representatives.

We have “Metastatic Awareness Day” because Sioned deserved more.

More time with the ones she loved, more research to understand why this happened to her, more treatment options and more public awareness of what she faced. So did Kim Casamassima, Kara Guzzetti, Sarita Jordan, Crystal Brion, Randi Rosenberg, Diana DiMare, Amber Gillespie, Ishiuan Hargrove, Aubrey Morgan, Jenn Tracz, Alisha Prince, Suzanne Osborne, Kristen Martinez, Krysti Hughett, Bethany Hance, Jill Cohen, Carrie Ivy, Andrea Media, Michelle Gherardi, Gwendolyn Bibb, Paris Wagner, Michelle Howe, Debbie Molis, Cindy Ruben, Kat Werner, Jody Carrico, Yolanda Steinman, Kim Barnhart, Jana Peters, Patti Balwanz, Lisa Covington, Deb Bollman, Colleen MacAdam, Annie Schierts, Jill Johnson, Wendy Schwarz, Tiffany Dlouhy, Christine Sansone, Mary Knipp, Angie Elliott, Dona Canales-Higgins, Cynthia Rubin, Tracy Pleva Hillm and so many more.

Honor those you’ve lost to MBC by sharing their names in the comments below.


Metastatic Breast Cancer Awareness Week

Until 2009, MBC was not often mentioned during Breast Cancer Awareness Month. Nine MBC patients, including one of YSC’s early members, Randi Rosenberg, traveled to Washington, D.C. to change that. Their efforts resulted in the passing of a unanimous resolution by Congress declaring October 13 as Metastatic Breast Cancer Awareness Day.

Every day this week features blog posts from young women living with metastatic breast cancer or experts on metastatic research.

Allie Vreeland share how being diagnosed with MBC has changed her outlook on life, explaining that we must all face mortality at some point, so it’s important to live life first and not waste it.

Lara MacGregor, Founder of Hope Scarves, shares how MBC changed her view on survivorship and how we can work together to strengthen the breast cancer community.

Melissa Bingham shares the mental and physical impact of MBC and how she dares to hope for a chance to grow old with her family.

We urge you to sign our #12Ktoomany petition now.
Help us reach our goal–to collect 12,000 signatures to represent the 12,000 young women who will be diagnosed under 40 this year in the US. Because we need to stop losing the women we love.

 

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