Category Archives: brca

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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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.

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.

Vote for FORCE in the Chase Community Giving Challenge

If you regularly read my blog, you know that I am very passionate about a lot of organizations, but there are two in particular that are nearest and dearest to my heart.  One is Susan G. Komen–the organization dedicated to finding a cure for breast cancer. 

The other organization is quite a bit smaller and in the shadow of the biggies but no less important.  It’s called FORCE and their mission is to improve the lives of people affected by hereditary breast and ovarian cancer.  It was started by a wonderful woman who cares deeply about this cause and who works tirelessly to make a difference in our community.  FORCE has helped me, but more importantly I’ve seen the masses of women who have come to challenging crossroads in their lives and have persevered with the support of FORCE.  I’ve sat in local meetings and watched women tearfully talk about how alone they felt before they discovered the support of FORCE. 

FORCE has some important roles in our community.  First and foremost, FORCE has the ability, through local outreach coordinators all over the country, to provide support on an individual and group level to women who are navigating the complex world of hereditary cancer.  In addition to the local support groups, the message boards provide a safe-haven for women to come together.  And the toll-free 1-800 number is a place for people to turn when they don’t know where else to go.

Second, FORCE advocates for the hereditary cancer community–taking on issues such as GINA to make sure our rights are protected and we cannot be discrimated against for our genetic make-up.

And last, FORCE helps raise awareness of hereditary breast and ovarian cancer so that women can learn of a cancer causing genetic mutation, take preventative measures and avoid a cancer diagnosis. 

Have I convinced you enough how much I care about and love this organization?  If I have, please take a few seconds to vote for FORCE in the Chase Community Giving Challenge.  If you have another few seconds to spare, post it on your Facebook page, tweet it and share it with your friends. We have the opportunity to win a grand prize of $250,000, one of 4 runner up prizes of $100,000 or one of 195 $20,000 prizes.  With your help, we can make this a reality.

Taking Action–Addressing the New Breast Cancer Screening Guidelines

Last week I had the opportunity to join a great group of women on a panel to talk about the new breast cancer screening guidelines put out by the USPTF.  I sat at the table with Senator Gilda Jacobs, Dr. Ruth Lerman—a breast care specialist and 3 time breast cancer survivor—and Dr. Karen Hunt, Breast Imaging Site Director at Henry Ford Hospital.  The event was hosted by the Cancer Thrivers Network  for Jewish Women and moderated by another young breast cancer survivor and member of the Cancer Thrivers Network, Elizabeth Schiff Barash.  We all brought our unique point of views and expertise to the panel and I’m so thankful to the thrivers for putting this panel together so quickly.

The December 21 panel, with moderator Elizabeth Schiff Barash, Thrivers Michelle Passon and Patti Nemer and JFS Community Outreach Officer, Ellen Yashinsky Chute

It’s been 6 weeks since the USPTF released their new guidelines.  I often wonder if they envisioned the uproar and discussion their release would create.  It took the online communities through the blogosphere, news sites and social networks minutes to start posting opposition and opinions on the new guidelines.  There was no need to wait and hear more from them.  Their guidelines, as they released them on that November day, were clear.  If you were under 50 without knowledge of a family history, your best bet was to hope that the big “C” didn’t strike.  Because if it did, you would have no way of knowing until it was staring you in the face and was perhaps too late.  No mammograms, no need for breast self-exams and no clinical breast exams.  Talk about anxiety that unnecessary biopsies create, how about the anxiety of the woman that discovers stage 4 breast cancer when her cancer should have/could have been discovered earlier?  

We’ve spent 25 years educating women on the importance of routine mammograms beginning at age 40 and we’ve spent even longer touting the importance of breast self-exams.  Just recently, Deborah Wasserman Schultz introduced the EARLY Act which is designed to educate even younger women—specifically women under 40 about the importance of early detection.  Early detection of breast cancer saves lives and no one can deny that fact. 

So why do we have these new guidelines?  And what do they mean? Will laws change?  Will insurance companies change coverage? Will women start pushing their mammograms later and later? Will we no longer learn how to do a breast self-exam?  Will doctors continue to do clinical breast exams or will those go away?  I’m sure any of these scenarios are possible but for me, the scariest, is that women will actually listen to these guidelines.  Maybe not at first but when the chatter quiets down, people may start to push their screenings later and later.  They may start to ignore years of advice to check their breasts.  And guess what, more women will die of breast cancer. 

So where does this take me?  Clearly I disagree with the guidelines.  And yes I’m angry, borderline furious, but I see this as an opportunity to start a conversation and make a difference.  We can make sure that the women in our life understand that mammograms, breast self-exams and clinical breast exams are just as important today as they were on November 16.  We can sign petitions put out by FORCE and Susan G. Komen to make our voices heard and make sure all women have access to mammograms beginning at age 40. We can push for better diagnostic tools to detect cancer even earlier, and we can advocate for our own health by doing breast self-exams, getting proper clinical breast exams and continuing on with our yearly screenings.

Not digging the newest breast cancer screening advice

I just sat down to do some work tonight and was distracted by the federal government’s latest announcement.  It seems that a task force has decided that women should wait until age 50 to get mammograms and it’s only necessary to get them every 2 years.  They go on to say that breast self-exams do no good and women should not be taught to do them.  I am outraged and furious at this latest advice. Earlier this month, I spoke to 3 women over the course of 3 days all in their thirties with a recent breast cancer diagnosis.  And nearly every day, I hear of another young woman beginning a breast cancer fight. 

Sure the guidelines are different for women with a family history or a genetic mutation but what about those of us that discovered a mutation only after we were diagnosed?  I think everyone can agree that mammograms are not perfect but we need to find a better tool for screening younger women before we take away the one tool that actually works.  And why debate breast self-exams and breast exams performed by doctors.  A breast self-exam ultimately led to my diagnosis.  Where would I be two and a half years later if I hadn’t discovered the tiny lump in my breast?  Does the federal government care or are they just worried about increased costs of biopsies?  Share your thoughts?  We need to be advocates for our own health and make sure we are not negatively impacted by this latest advice.

Raising Awareness of Hereditary Cancer

 I’ve spent a lot of time in the past month thinking about hereditary cancer issues.  Last Friday, I spoke to the Michigan Cancer Genetics Alliance about FORCE.  And in between, I’ve had two FORCE outreach meetings. In speaking to the MCGA, I communicated my concern with the lack of awareness of both hereditary cancer and the importance of Genetics Counselors in the process.  Through my interactions with many of them, I know that they have similar concerns.  They had some nice suggestions of various groups within Michigan that may help me take on this issue.  I talk to women everyday who don’t know they are at risk and don’t know what to do if they are at risk.  Clearly I fit in the “didn’t know I was at risk” category. We’ve come along way through organizations like FORCE and Be Bright Pink but we still have a long way to go. 

FORCE coined a term to give people with a hereditary cancer genetic mutation a name.

FORCE coined a term to give people with a hereditary cancer genetic mutation a name.

At my most recent FORCE meeting, I met a woman who’s sister was diagnosed with DCIS (stage 0 breast cancer).  Prior to this diagnosis, she had no idea that she was a risk for a BRCA mutation.  She tried to get genetic testing but her insurance company turned her down.  6 months later her sister was diagnosed with stage 3 breast cancer and 1 year later is back with more cancer.  Could this be avoided?  This is just one of many stories I hear.  How can we make sure that more women have the knowledge they need to ultimately avoid a cancer diagnosis?  Do we need a specific week devoted to hereditary cancer awareness?  I need your help, my readers, to make sure that we are able to inform, educate and spread the word.  We are a small but mighty group and we can do this together.  Post some comments and let me know how you think we can make an impact.

The Breast Cancer fight continues

It’s been a long interesting week, and I finally have a moment to share.  After my diagnosis, I was connected to an acquaintance that had just finished her journey.  She became a mentor of sorts—supplying me with cute hats, sending thoughtful cards and calling or emailing to check in on me.  She was honest and inspirational all at the same time.  We’ve kept in touch over the past two years—because breast cancer and the BRCA gene that we both share create somewhat of an unbreakable bond. 

Just days before the Breast Cancer 3-Day, I learned her cancer had spread.   The words our mutual friend shared withry=400 me twisted my heart, took my breath away and made me feel like I had the biggest kick in the stomach.  Two days later, I walked and prayed and kept her in my continuous thoughts.  The walk this year had a whole new meaning for me personally.  I guess before this news, I lived in my blissful and optimistic world of thinking that those of us diagnosed with early stage breast cancer these days simply needed to do our time, have our surgeries, chemo, etc. and go on to live long healthy lives.  While this news shattered that for me, I also felt incredible sadness for her and her family.  I know her journey will be a tough one—I also know her incredible strength.  On Monday Night, I got an email from her.  She was back in the chemo chair as part of a PARP Inhibitor clinical trial.  More hopefulness as these are the drugs that are showing the most promising results.  She remains part of my daily thoughts and prayers.

About a year ago, I found a blog through my friend Pam.  The blog was written by a young woman in Minneapolis raising three young children and battling late stage breast cancer 1 year after her early stage breast cancer diagnosis.  I read her blog for several months following her journey.  Just minutes after I read my friend’s email on Monday Night, I ventured over to Pam’s blog to learn that Cari had lost her fight.  More heartache, sadness and the reality of this dreadful disease came crashing through me. 

At the same time, breast cancer awareness month is kicking into high gear.  I know there are many questions and potentially even criticisms about the amount of effort and money put into this disease.  But we can’t stop.  Not even for a minute.  Not when stories like this continue every day.  Breast Cancer is real and it’s cruel and we have to find a way to stop it in its tracks.  It can’t continue to rob children of their mothers, to steal wives from their husbands, to make parents feel the pain from the loss of a far too young daughter.  It must go away and until it does, I’ll keep fighting and I hope you’ll keep joining me.

100 things to share about cancer in honor of my 100th blog post.

In honor of my 100th blog post, I’ve started a list of 100 things to share about cancer. I actually thought a lot about this list.  I didn’t want to bore with you with lots of useless facts.  Haven’t found 100 organizations that I love and while I’ve met lots of cool people through my journey, I can’t think of 100 to highlight.  This is a combination list and includes really cool organization, some interesting facts and statistics, great doctors, some cool people I’ve met along the way and anything else random I can share with you. I hope you find some of the links and facts within this post helpful.  Please note: I am not a doctor–just a survivor involved in the breast cancer world.   

I’ll start with really cool organizations. Some I know pretty intimately and some I just know on the surface. Regardless, they are all worth checking out and have some pretty great people involved.

BRCA and other hereditary cancer facts

  • About 10-15% of cancers are hereditary.
  • A BRCA mutation can give you up to an 87% lifetime risk of breast cancer.
  • Ashkenazi Jews have a 1 in 40 chance of having a BRCA mutation.
  • The general population has a 1 in 400 chance of having a BRCA mutation.
  • Family history on your father’s side is equally as important as family history on your mother’s side.
  • If you have a family history of breast or ovarian cancer, you should talk with a genetic counselor to assess your risk.
  • Triple negative breast cancer is common among women with a BRCA 1 mutation.
  • Estrogen positive breast cancer is common among women with a BRCA 2 mutation.
  • Men with a BRCA 1 mutation have roughly a 6% lifetime risk of breast cancer.
  • Men with a BRCA 2 mutation have roughly a 7% lifetime risk of breast cancer.
  • Bilateral mastectomy is the best way to avoid breast cancer in women with a BRCA mutation.

Random Breast Cancer facts and tidbits

  • Each year 10,000 women under age 40 are diagnosed with breast cancer.
  • As of 2008, there are 2.5 million women in the US who have survived breast cancer.
  • There will be an estimated 192,000 cases of breast cancer in the United States this year.
  • Inflammatory Breast Cancer is very frequently misdiagnosed. See other less common breast cancer symptoms below.
  • If you feel a lump, it’s best to have it removed or biopsied rather than waiting and seeing.
  • Women under 40 have very dense breasts.
  • Abnormalities in breast tissue are difficult to detect through mammograms when women have dense breasts.
  • Monthly self breast exams are very important.
  • There are many types of breast cancers.
  • Breast cancers in women under 40 tend to be more aggressive and have a worse prognosis.
  • There are other ways to cut your risks of breast cancer if you are at high risk — like the drug Tamoxifen.
  • Susan G. Komen spent 100 million dollars on breast cancer research in 2008.
  • Every major advancement in breast cancer research has been touched by a Susan G. Komen grant.
  • Women can get breast cancer in their 20s and often these cancers go undiagnosed.
  • Doctors can test lymph nodes for cancer by first doing a sentinal node biopsy.

There are lots of other breast cancer symptoms other than a lump

  • Swelling of all or part of your breast
  • Skin irritation or dimpling
  • Breast pain
  • Nipple pain or nipple turning inward
  • Redness, scaliness or thickening of your nipple or breast skin
  • Nipple discharge
  • Lump in your underarm

Breast cancer reconstruction options – lots of great ones

  • Immediate reconstruction with tissue expanders
  • DIEP Flap
  • One Step
  • Tram
  • Nipple Sparing
  • Lat Flap

Really cool people I’ve met through my breast cancer experience

  • Lori Buckfire – check out a hilarious blog from a very inspiring person
  • Pam Lucken – a survivor I met after she was diagnosed, now a good friend
  • Patti Nemer – knows everyone in the Michigan Breast Cancer community
  • Valerie Fraser – Inflammatory Breast Cancer Survivor and big advocate in the breast cancer community
  • Jonny Imerman – testicular cancer survivor and founder of Imerman’s Angels
  • Missy Mazorati-Bergman – another wonderful breast cancer survivor who walked around with the boldest bald head ever for 6 months
  • Laurie Alpers – survivor friend who got very involved with FORCE early on and now walks with me on Ta Ta Breast Cancer
  • Whitney Ducaine – my genetics counselor who helped me start the first Southeast Michigan outreach group for FORCE
  • Lindsay Avner – founder of Be Bright Pink
  • Sue Friedman – Executive Director and Founder of FORCE
  • Joanna Rudnick – Producer of documentary In the Family
  • The women of Ta Ta Breast Cancer — both my new friends and old friends
  • The walkers, crew and staff of the Breast Cancer 3-Day who devote so much to finding a cure for this disease
  • My new FORCE family including all the wonderful genetics counselors in Southeast Michigan
  • The women and men I met at the FORCE conference in Orlando
  • Lots of really inspiring advocates I met at the Susan G. Komen Advocate Training
  • The women battling cancer everyday and reminding me why I need to keep fighting

Fun websites to buy  cancer gear

 Great doctors

  • Dr. Alvin Schoenberger – greatest OBGYN ever who was very aggressive in making sure we took action with my lump
  • Dr. Jeffrey Margolis – brilliant Oncologist who treated me
  • Dr. Daniel Sherbert – super nice and extremely talented Plastic Surgeon
  • Dr. William Kestenberg – performed my biopsy, results on Thursday night, scheduled all my tests throughout the weekend so I didn’t have to wait the weekend to learn that the cancer had not spread
  • Dr. Scott Schell – my breast surgeon
  • Dr. Ruth Lerman – follows me for yearly breast exams, also a breast cancer survivor
  • Dr. Dana Zakalik – Oncologist very involved in cancer genetics and helped start our local FORCE group
  • Dr. Laura Freedman – Radiation Oncologist and personal friend who was always willing to talk to me
  • Dr. Melissa Davidson – my trusted sister-in-law also a physician who  reviewed my pathology report and all my test results and spent lots of time helping me navigate
  • Dr. Scott Davidson – my brother-in-law who spent lots of time on the phone with me following my diagnosis and during my treatment

Easy ways to raise money

  • No need to plan an elaborate black tie dinner, a backyard party with all the food donated and an auction can generate lots of good income without requiring a big donation.
  • Promote your favorite places and ask them to make a donation in return.  TD nails has donated several hundred dollars to the Breast Cancer 3-Day just by having people mention Ta Ta Breast Cancer. 
  • Have a bar night — we promoted our 24 Seconds fundraiser via Facebook and a small amount of email and raised over $1,000 without any out of pocket cost
  • Theater nights — we promote and buy as many tickets as we need — raised over $3,000 for Annie

Some Great Books

Great Movies

As I was developing this list, I realized that I have a ton of great people reading my blog who could provide some additional input into my list of 100 so I’ve left room in the list–I have about 10 left.   Any organizations you love, doctors you trust, must-read books, new things you’ve learned, tidbits that we can all share.  The more we can help eachother out, the better we can fight.  So go ahead and post a comment, help me complete my list of 100.

Additions to the list

Thanks Molly, Patty, Kim, Laurie and Alyssa for adding some great sites and tips to check out by posting a comment.  Keep em coming….

  • Sister’s Hope – Recommended by the Pink Fund
  • eraceibc.com – A site devoted to Inflammatory Breast Cancer
  • thebcmall.com
  • Unbeatable – a musical about breast cancer.  I need to know when they are coming to Detroit.  Looks pretty darn funny.  Check out the description I pulled from their website and the very cute image.3417805339_54165a1dda

UNBEATABLE! juxtaposes the gravity of a cancer diagnosis with optimism, hopefulness and a keen sense of humor. The message of UNBEATABLE! is universal and applies to anyone who goes through life at full speed, without realizing that in the end, it is the people we love in our lives, not the “to do” lists, that deserve our time and attention.

Laurie’s Additions

  • Dr. Julio Sosa – Plastic Surgeon
  • Shades of Pink Foundation – non-profit to help women with financial issues after a breast cancer diagnosis
  • Dr. Pamela Benitiz – Breast Surgeon

Another suggestion from a trusted source…

Dr. Gail Parker – therapist in Southeast Michigan available to provide support to people with BRCA Mutations

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