One Face, One Voice: Kim Crist’s Metastatic Breast Cancer Story

Guest Post By: Kim Crist

 

After I finished treatment for early stage breast cancer, I never considered that I was in remission. I told everyone I was cured. The doctors told me after four months of chemotherapy and 40 rounds of radiation that I would be just fine. It took me a long time to really believe that I was going to be okay. For years, I couldn’t drive by my oncologist’s office without having that “sick to my stomach, I had just had chemo” feeling. But the nauseating fears were finally gone when I hit the five-year mark. I remember driving by my doctor’s office and realized I didn’t think about my cancer. I had finally let go of my fears and realized I really did beat this.

It turns out there is no way to know if you have a cancer cell tucked away. It was almost 10 years after my first diagnosis that I was diagnosed with Metastatic, or stage four, disease. They say if you go five or 10 years, you’ve beat it… I thought I was home free. Not one doctor told me the true statistics for recurrence. If I had known, maybe I would have been more diligent in taking my estrogen blocker. Maybe I would have done more research at the time. Perhaps I would have known what symptoms to look out for. The maybes, the what ifs take a toll.

Funny thing is, I thought I was taking care of myself. I worked out and lifted weights, I took exercise classes. I even thought I was doing too much because on two separate occasions I ended up in the ER with crippling back pain. I had to actually leave during the middle of a workout class. Each time being sent home with pain meds and muscle relaxers. Not one doctor asked about a cancer history.

It wasn’t until a routine yearly blood work and oncologist visit to get my mammogram prescription that my doctor saw a rise in my tumor markers…the results you have figured out. What does this diagnosis mean; Metastatic Breast Cancer?? As far as I’m concerned Metastatic disease is a polite way of saying you have stage IV cancer. Stage IV?? We get it now. At least one would think so.

I believe Susan G. Komen is a wonderful platform. We have so much information to share and research left to be done. Walking and raising money allows me to share my story and hopefully teach someone else what to look out for and what questions to ask. Why didn’t those doctors know to ask if I had a history of cancer? Why didn’t I know that bones are the most likely place for initial metastasis? Why didn’t I think to, or better yet, why didn’t I know to ask for an MRI over an X-ray? X-rays don’t show cancer. This is important information that I wish I had known and needs to be shared.

“We need to laugh. We need to laugh at ourselves”

Now, people ask me, “Are you in remission? You’ll be cured, right? Are you done with your medicine?” The answer? No, no and no. They ask, things like, “how long will your medicine work?” Until it doesn’t. Then I’ll find another drug. All in hopes of going another three months praying and stressing that the next scan is stable. I can live with it in my bones, I dread the day it attacks my organs.

Right now, there is no time for being sick and no time for stinky thinking. No time for rest. Now is the time for faith and giving back. Being a Susan G. Komen walker and super supporter has given me an opportunity to talk to people from all over the country. The 3-Day brings together a large community of fighters, survivors and the surviving.

As a 14-year walker I’ve not only seen the impact we have made in research, but I’m living proof. Coming up on five years, I would have never thought I’d have the quality of life that I do. My bones are weakened by the cancer slowly eating away at it, but now there is a simple shot I take every quarter to keep me strong. My freedom and quality come from not being stuck in a chemo chair. Breakthroughs have happened!! But we have to keep working.

“It’s important to keep your strength and be out in nature”

Thank you, Susan G. Komen, thank you fellow supporters, sponsors and researchers. This walker will never give up and I will never give in.

Learn more about Metastatic Breast Cancer. If you or a loved one has questions or needs support, please call 1-877-GO KOMEN.

 

Official Sponsor of the 3-Day®

From Sidewalks to Science: An On-Route Look at Komen’s Research with Dr. Maria Soledad Sosa

Opening Ceremonies

Dr. Sosa, can you tell us a bit about what led you to do breast cancer research?

My mom was diagnosed with ER+ breast cancer 18 years ago. Two years ago, her cancer returned and she needed a second round of treatment. Fortunately, she is doing well. My personal experience with this disease greatly impacted my decision to work in this field, and inspires me every day as I work to make an impact in breast cancer research.

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On the Route

Since we’ve got some time, could you tell us a bit about your current research?

Metastasis (or the spread of breast cancer to other organs) is what kills people with breast cancer. My research is aimed to avoid metastasis before it even begins by targeting the “seeds” of those metastases. These seeds are named DCC (disseminated cancer cells) and are “asleep” in the body, and can be found in important organs like the liver and bones even before a primary tumor is detected. But something causes them to wake up and become aggressive. I believe if we can figure out how these DCCs behave and spread, we might find strategies to eliminate them before they reactivate and form metastases.

At Camp

Now that we’ve made it “home” for the night and are enjoying the support of our crew, can you tell us about how your work would be affected without Komen funding?

Komen funding is imperative to my research. With Komen’s support, I can look for ways to keep these dangerous DCCs “asleep” so they can’t grow and become metastatic tumors. It also allows us to find ways to eliminate DCCs while sleeping. My hope is that this work could someday lead to a cure for metastatic breast cancer.

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Day 2

What would you say to somebody who’s just been diagnosed with breast cancer?

My advice to people would be to have hope and be diligent about your own care. People with no sign of breast cancer should continue to follow-up with their doctor, follow the doctor’s recommendations, and continue to get screened every six to 12 months after treatment has stopped. It was a follow-up screening that helped my mom detect her breast cancer recurrence early. Typically, after a person is treated for breast cancer they are considered to have no sign of breast cancer. However, some people may have DCCs in vital organs that are “asleep.” They could stay like that for years — even decades in the case of ER+ BRCA patients — so it’s important to understand that risk and be proactive about screening. Early detection and follow-up could save the life of a person with no evidence of disease.

Cheering Station

Look at all of these enthusiastic supporters out along the route! Tell us about how you are involved with Komen outside of the lab.

I’m excited to be one of four Komen-funded grantees selected for the Metastatic Breast Cancer (MBC) Research Grant crowdfunding opportunity, where anyone can donate funds to support a research project or researcher of their choice. You can learn more about my story on the Komen Facebook page and donate directly to my Komen-funded MBC research project here!

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Closing Ceremonies

Thanks for walking with us, Dr. Sosa. One final question, in working with patient advocates, how have they impacted your research by bringing the patient perspective?

Sandra Spivey is the patient advocate for my grant, and was so helpful in developing the Letter of Intent and grant proposal. She is very supportive, giving me feedback on how to highlight the patient perspective. I was amazed by her energy and passion. Even when she got sick, she kept working and sending me comments for this grant. I really appreciate all her help, and I am sure she will have a positive impact on my research.

Dr. Maria Sosa is an Assistant Professor at Icahn School of Medicine at Mount Sinai and you can donate to her research project directly through Komen’s crowd funding web page. Since 1982, Susan G. Komen has funded $956 million in breast cancer research, second only to the U.S. government and more than any other nonprofit in the world. Learn more here.

Pit Stop

Three things to know about Dr. Sosa:

  1. I like dancing. And as an Argentinean woman, I dance tango!
  2. In my free time, I love to paint
  3. My family enjoys being outside and being active — doing things like hiking, kayaking, and swimming.

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Grab and Go

Here are three ways you can use this information to help reach your 3-Day fundraising or recruiting goals:

Sample Tweet:

Having seen the effects of breast cancer in her own family, Dr. Maria Soledad Sosa is now conducting research aimed to avoid breast cancer metastasis before it even begins! Learn more about her research here:

Sample Facebook Post:

Having seen the effects of breast cancer in her own family, Dr. Maria Soledad Sosa is now conducting research aimed to avoid breast cancer metastasis before it even begins! Komen funding has been imperative to her research, and she hopes to one day find the cure for metastatic breast cancer! Learn more about her work here:

Insight Into Komen’s 2017 Research Grants

This year, Komen announced $30.7 million in research funding for 98 research grants which will mostly focus on discovering new treatments and improving our understanding of the most lethal forms of breast cancer – helping us move closer to achieving our Bold Goal.

For the first time, Komen will be giving members of the public an opportunity to directly fund specific research by participating in a crowdfunding initiative on Komen’s website.

We wanted to share with you the grant process and how the 2017 portfolio breaks down this year since 75% of net proceeds from your fundraising support this research and we could not accomplish any of this work without you.

Peer-Review

Komen has a renowned peer-review process – lead by Komen’s Scientific Advisory Board (SAB) – that ensures the organization is funding the best and most imperative forms of research. Advocates and breast cancer patients also take part in peer-review, to ensure all aspects of breast cancer needs are being covered. You can learn more about peer-review here.

The 2017 research grants came through the request for applications (RFA) issued last year, prior to the Bold Goal announcement in September of 2016. Still, 41.3% of Komen’s grants are focusing on metastatic breast cancer research and 54.4% of grants are focusing on new treatments.

The 2018 process for new proposals began in April and all applications submitted were asked to directly support Komen’s efforts towards the Bold Goal. Researchers were invited to submit projects that addressed metastasis or resistance to current therapies.

This Year

In 2017, Komen research funding went to institutions in 27 states and across 8 countries. The majority of grants are focusing on new screening technologies, metastatic and aggressive types of breast cancer and understanding and addressing disparities in breast cancer. By targeting metastatic disease – which is responsible for almost all of the nation’s 40,000 annual breast cancer deaths – Komen is hoping to reduce breast cancer deaths in the U.S. dramatically. To date, Komen has funded more than $180 million in metastatic breast cancer research. 2017 funding also includes $17.6 million to early-career investigators which helps to ensure a continuum of breast cancer research across generations.

Komen’s 2017 portfolio includes*:

  • 37 grants expanding our knowledge of metastatic breast cancer and how to better treat it or prevent it;
  • 42 grants looking into triple negative breast cancer, an aggressive subtype of breast cancer; 59 grants focused on new therapies;
  • 24 investigating drug resistance (why drugs stop working in some patients);
  • 9 on disparities in breast cancer outcomes;
  • As well as projects investigating inflammatory breast cancer, early detection, prevention, Big Data and more.

Crowdfunding

This fall, Komen is making it possible for supporters to make a personal impact on breast cancer research. During National Breast Cancer Awareness Month in October, Komen will highlight four metastatic breast cancer researchers and encourage donations to their specific grants. More information on the crowdfunding initiative will be announced in October.

Thank You!

When you walk and raise money you are making a direct contribution to our grants. Funds that you raise through 3-Day could  support a young scientist for a day working toward finding the cures, or could support an oncologist for a day as they run clinical trials to find the cures for breast cancer. We could not fund potentially lifesaving research without your help and support. Thank you for the impact that you make here at Komen and always being More Than Pink.

You can learn more about Komen’s 2017 funding here.