Category Archives: hereditary cancer

Previvors have powerful knowledge

I just finished watching a video from TEDMED 2012 of a presentation given by Dr. Ivan Oransky. In the video, he speaks about predisease states. The presentation seemed interesting, at first, as he talked about many preconditions and the underlying issues of over treatment that can cause unnecessary harm to patients. He raised some good points.

6 minutes into the video, he began his discussion of “previvors”. I’m saddened at his lack of knowledge and insensitivity to women and men who have a known genetic mutation. When I was diagnosed with Breast Cancer at age 36, I went through genetic counseling and testing. Through this counseling and testing, I learned of my BRCA 2 mutation–the mutation that significantly increased my lifetime risk of both Breast and Ovarian Cancer. I quickly became involved in a wonderful organization called FORCE. FORCE coined the term previvor, and I am so thankful for what this organization has contributed to the lives of both women and men living with a BRCA mutation. FORCE has saved lives by increasing awareness, providing support, providing education, and providing a community for men and women affected by a hereditary cancer mutation.

Sadly, I know too many young women that learned too late about this mutation. These were mothers, sisters, daughters and friends that left us far too early because of a cancer diagnosis.

Dr. Oransky, I encourage you to learn more before you laugh off the term previvor, before you suggest that Mark Burnett start another TV show. You are talking about beautiful women who are taking measures to save their lives. Beautiful women who deserve to live. I am lucky to know so many previvors who are living wonderfully productive lives because knowledge gave them the power to escape a cancer diagnosis.

Dr. Oransky, I hope you will learn more about hereditary cancer mutations, about previvors, and about this wonderful organization that continues to save lives.

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Celebrating 41 years

On March 27, in just one week, I will celebrate my 41st birthday. Birthdays are meaningful to me–especially this one. I was 36 when I was diagnosed with Stage 2 breast cancer. This year I turn 41 and celebrate 5 years of survivorship. I feel so lucky to celebrate another birthday. Sadly, there are far too many women that don’t make it to 41. Yes, breast cancer is still stealing young lives, and I am committed to do what I can to stop that in its tracks. For my 41st birthday or just because, please join me in my fight to put an end to breast cancer.

This year, I have two ways for you to help. Facing Our Risk of Cancer Empowered has just launched a hereditary cancer research fund–the goal of the fund is to specifically look at the issues surrounding hereditary cancer. I’ve said goodbye to many amazing women who have faced cancer because of a genetic mutation. The research is absolutely critical, and I’m asking for your help. The goal in year 1 is to raise $100,000 to begin funding this important research. With your help, FORCE can get there.

In August, as I officially celebrate 5 years as a survivor, I will also proudly walk with over 40 men and women on Ta Ta Breast Cancer in the Susan G. Komen 3-Day for the Cure. I am proud to say, we are under $70,000 away from raising $500,000 since I first formed the team in 2008.

Please help me celebrate 41 years. Many small donations will add up to so much for both of these organizations. Together, we can say goodbye to breast cancer forever.

Here come the 40s.

In less than 1 week, I will celebrate my 40th birthday. Many people have asked me how I feel about turning 40 and I can honestly say, I’m excited. Getting older beats the alternative and unfortunately, I know far too many people who haven’t had the opportunity to celebrate a 40th birthday. I’m lucky beyond belief and I’m taking this week to reflect back on my 30s and where I am today. My family and close friends have asked what they can buy me for birthday. And I can really only think of one thing that money can buy that would make me very happy. It’s not immediate gratification. The results take time but we are seeing the results every day. I know with perseverance, great brains and the power of people, we can and will make my dream come true. I’m asking for an end to breast cancer, an end to the pain of chemotherapy and surgery, an end to suffering the great trauma and loss of losing a loved one. If you are one of my friends or family that wants to know what I want for my birthday, I’ll make it easy for you. You can contribute to my 3-day journey to end breast cancer or you can make a contribution to FORCE, an organization that is working very hard for me and so many others.

Reflecting on 2010. Looking forward to 2011.

My blog posts are coming less and less frequently. But as 2010 comes to a close, I thought it would be nice  to do a little recap on the year. 2010 had plenty of highlights:

  • We had our biggest 3-Day team yet and a multitude of great fundraisers.
  • The Cancer thrivers planned a wonderful event to raise awareness of hereditary breast and ovarian cancer in the community, and I got to model some really cute jeans.
  • I was promoted to Managing Partner of Brogan & Partners and I’m loving my new role.
  • We had lots of family vacations including a ski trip, family camp and multiple trips to Northern Michigan.
  • I finished my 3 year clinical trial on Zometa which included quarterly visits to my Oncologist with a quick infusion.
  • The completion of my clinical trial meant I got my chemo port removed and I even got to keep it as a souvenir.
  • Congress passed a National Hereditary Breast and Ovarian Cancer Awareness Week–a huge step in educating women about their risks.

While my family and I experienced lots of joy, I was reminded all to often of the true fragility of life.

  • The funeral of a true cancer warrior who’s infectious smile and personality will be missed and always remembered by all who were lucky to know her.
  • A breast cancer recurrence in a remarkable woman who I think and pray for daily.
  • A pancreatic recurrence in another young woman–an old family friend. I can only hope and pray that her chemo treatments are demolishing cancer cells daily.
  • And far too many others to mention in this short blog post.

As I write this, I have high hopes for 2011. I hope that 2011 brings new treatments for all types of cancers. I hope that 2011 brings improved health for too many people suffering with metastatic disease. I hope that those newly diagnosed with cancer in 2011 have an early diagnosis and the strength and support to kick cancer to the curb. Finally, I hope that all of you have good health, prosperity and lots of happiness in 2011.

In loving memory of Lori Buckfire

Dear Lori,

You came into my life two short years ago and you touched me in a way so few people have.  We were instantly connected by our genetic mutation and our unending desire to see a world without cancer. 

With Lori at Relay for Life in 2008.

You introduced me at Relay for Life as a cancer warrior but you were the cancer warrior.  You fought Ovarian Cancer like a champion for so many years.  I admired your strength and your ability to find the humor in nearly every situation.  I looked forward to reading your blog posts and laughed out loud at your frank and hilarious stories.  Tomorrow will be a sad day for the thousands of people who were lucky to know you.  You were loved and admired by so many.   And we will all continue to fight this dreaded disease in your memory and in your honor.  

With love always and forever,

Ellyn

One more little request

With Representative Wasserman Schultz

This is my second post in one week.  Pretty certain you’re reading this and running in the other direction wondering what I want you to do now.  I know, every time I post, I’m asking for you to do something but this one is really important (OK they are all really important).   But this one is really really important and can seriously impact lives.  Representative Deborah Wasserman Schultz introduced #HR1522 legislation into Congress which will establish Hereditary Breast and Ovarian Cancer awareness week and make Wednesday of that week National Previvor Day.  We need 100 co-sponsors in the house by August 2 and right now we have 20. 

Please take action quickly for my good friend Sue Friedman–who left a career as a vet to start FORCE over a decade ago.  Take action for so many of my friends who’ve learned they have a BRCA mutation and have taken preventative measures before they’ve gotten a cancer diagnosis.   Take action for way too many women who are battling metastatic disease because they found their cancer too late or had a recurrence.  Take action for all the young women diagnosed with cancer because BRCA strikes younger women and is much more aggressive.  Take action for the young girls in our lives who need to know about hereditary cancer so they can live long, healthy cancer-free lives.  Take action now because August 2nd is quickly approaching.

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