Category Archives: Ovarian 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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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.

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

Another anniversary–celebrating at the FORCE conference.

One year ago today, I started another journey.  My life as a patient came to a close, and my life as a breast cancer mentor, advocate, and fundraiser was kicked into high gear.  Yes, a year ago today was my final breast surgery.  Once again, it’s hard to believe another year has passed.  And what a year.  Tomorrow I will venture to Orlando for the annual FORCE conference.  I can’t wait to meet many of the people I’ve communicated with over the course of the year.  I’m looking forward to learning more and taking in everything the conference has to offer.  I know it will be an exciting and educational weekend.  I know there is so much work going on in the area of hereditary breast and ovarian cancer, but yet there is so much left to do.

The top experts will be there, so if you can’t make it to the conference but have a specific question on hereditary breast and ovarian cancer, post it here.  I’ll try and get some good answers to share next week.

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