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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.
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.
In my last post, I wrote that it had been a long interesting week. On Wednesday, just one day before the start of breast cancer awareness month, I had the opportunity to hear Nancy Brinker speak at the Mothers Daughters Sisters and Friends luncheon benefiting the Francee and Benson Ford Jr. Breast Care and Wellness Center at Henry Ford Hospital. Since I was diagnosed with breast cancer, Nancy Brinker has become one of my personal heros. 27 years ago, she promised her dying sister she would do everything she could to end breast cancer. And apparently when Nancy Brinker sets her mind on something, she doesn’t give up.
Hearing her speak gave me a sense of hope and filled an intense sadness I felt just one day earlier. Susan G. Komen is the organization that has funded the research to keep so many women alive. Susan G. Komen is the organization that changed breast cancer from a deep dark secret to an everyday conversation. And because of Susan G. Komen, during the month of October, we are surrounded by pink to honor and recognize those that continue to fight. I am proud to be involved with this organization and so happy I had the opportunity to hear Nancy in person. What a great way to head into October.
Thank you Nancy for inspiring us, leading us, and never settling for anything less than a world without breast cancer.
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.
- FORCE – this organization is near and dear to my heart
- Susan G. Komen – I’m guessing most people are pretty familiar with this organization
- The Pink Fund – helps women going through breast cancer with some great financial assistance
- Be Bright Pink – worth looking at this wonderful organization that helps young women with hereditary cancer issues
- Imerman Angels – one of my first connections when I started my journey
- Sky Foundation – nothing to do with breast cancer but started by a really neat woman looking to make a difference
- Ovarian Cancer National Alliance
- Cancer Schmancer – lots of great advocacy from this organization
- American Cancer Society
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
- Immediate reconstruction with tissue expanders
- DIEP Flap
- One Step
- 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
- 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
- Why I wore lipstick to My Mastectomy
- In the Family
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
- 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.
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.
- 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
If you are considering walking with us next year, check out this video for some inspiration. I found it on YouTube. I love that they caught the Ta Ta Breast Cancer cheering section pretty close to the beginning(notice the little guy in the Tie-Dye and the man in the pink shirt on the phone) I also love that they caught my reunion with my daughter who was at overnight camp for four weeks before the walk. Enjoy the video–it’s just a little taste of what the Breast Cancer 3-Day is all about.
Others, I met during training walks. Some were acquaintances prior to the walk. And some others are the people nearest and dearest to me—my mom, my aunt, my sister-in-law and some of my best and oldest friends. Sharing this experience together takes all of these relationships to a much deeper level.
If you have ever thought of walking the Breast Cancer 3-Day (now called the Susan G. Komen 3-Day for the cure) but just didn’t think you could do it, trust me, you can. If you live in Michigan, join us next year. If you are in another state, grab some friends and don’t wait another day to sign up. If you can’t walk, crew or volunteer. You will thank me later.
We have to do this for so many reasons. But I think 5-year old Samantha Dubin summed it up so well when she returned from a cheering section and said to her brother Josh.
“The women are walking now, so they will save my boobs later.”
I’ve been so busy in Dallas, I neglected to post a blog about our fundraiser Saturday Night. Huge success—lots of people, lots of fun and great weather. And we raised almost $3,000. Not too much else to say except enjoy the pictures and thank you everyone for your support! Now on to the walk which by the way starts one month from today (actually yesterday by the time I get this blog posted).
Today is another big day. Happy 1 year anniversary of blogging on ellyndavidson.wordpress.com. 82 posts and 101 comments later, I’m still going strong and having fun. Thanks for joining me on my journey as a survivor. Hope you’ll stick with me.
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.
Time is flying by once again, and it’s hard to believe I’m already getting emailed training schedules with 10 mile walks. Not sure where the winter went but spring is definitely in the air. Just wish it would stop raining so I can get outside and get back to the walking. For now, I’ll stick with the treadmill.
My last post was just before my talk with St. John Health, and I was very happy with how it went. I got to meet the FORCE rockstar Sue Friedman in person. We must have said goodbye about 15 times and just kept continuing on with our conversation. She’s doing some tremendous things for our community and I’m so thankful for her work and her efforts. I wish I had more time to work with her but I’ll do what I can in between work, kids and other breast cancer activities.
Finally, fundraising is going crazy. Ta Ta Breast Cancer is up to 17 team members. The group of 17 has collectively raised $12,410.12 through 191 donations and we are nowhere near done. Thanks to all your support with all of our fundraisers to date, we have an additional $3,500 in funds for distribution sitting in our Ta Ta Breast Cancer account. Each walker must raise $2,300 so the ongoing fundraising is really important. Thanks to all my teammates for all of your hard work and all of you for all your support. Last, we’d love to have any newcomers to our team. So join in on the fun!
My all time favorite musical is “Annie”. As a child, I saw it in the theater several times. At 7 years old, we had a friend that was the understudy for Annie at the Fisher Theater. Before and after the show, I’d go to the dressing room and meet the cast—a dream come true for a 7-year old girl. As an adult (even prior to kids), I went with a couple of friends to see the show again and loved it just as much. The week my daughter was born, my mother-in-law purchased the VHS tape of the 1999 movie. I nursed my new baby and watched the movie. My kids are still watching it every now and then. And my two year old knows every word to the song “Tomorrow”. So when I found out Annie was making its way to the Fisher Theater once again and an old high school friend of mine gave me the opportunity to make it a fundraiser, I hopped at the chance. So now, I’m selling tickets to my favorite show, raising money for both FORCE and Ta Ta Breast Cancer and going with my 3 children, my parents and my in-laws on Mother’s Day. I’ve been giddy with excitement since I sent out my first emails yesterday and started to see immediate results. Can’t wait to see that cute little red head singing my favorite songs.