Fridays for FORCE: Book release!

Every week, a book is released that really helps the public. Not so often, a book is released that helps a segment of the public that has too few well-researched and apropos to their own experiences. One such book is being released this February 9th, 2012. Co-authored by Sue Friedman, DVM and Executive Director of FORCE and Rebecca Sutphen, MD and Kathy Steligo, this book delves into hereditary cancer and being to identify and understand your individual risk.

Cover of the New Book

Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny

By Sue Friedman, D.V.M., Rebecca Sutphen, M.D., and Kathy Steligo

If you are concerned that the cancer in your family is hereditary, you face difficult choices. 

• Should you have a blood test that may reveal whether you have a high likelihood of disease? 
• Do you preemptively treat a disease that may never develop? 
• How do you make decisions now that will affect the rest of your life? 

Confronting hereditary cancer is a complex, confusing, and highly individual journey.  With its unique combination of the latest research and expert advice about genetic counseling and testing, preventative surgery, fertility and family planning, and health insurance coverage information, as well as compelling personal stories, this book gives previvors, survivors, and their family members the guidance they need to face the unique challenges of hereditary cancer.

Sue Friedman

I am looking forward to reading this book and seeing where to go next in my journey of being BRCA2 positive. So far, I got past high surveillance, moved into an Oopherectomy (removal of ovaries) and graduated to a Prophylactic Bilateral Mastectomy (PBM). With each step, I reduced my risk of more than 90% to less than 2% for ovarian cancer and less than 4% for breast cancer. I need to adjust to my new life everyday. Having had the PBM, I found out I had DCIS stage 0 and removing my breasts was the thing I would have done anyway with that diagnosis. Cancer-free is where I stand today and "Confronting Hereditary Breast and Ovarian Cancer" will take me beyond that level.

I just pre-ordered the digital version for my Nook. It is available to pre-order as a hardback for $29.66 on bn.com or the Nookbook at $9.99. Go to http://goo.gl/A0Eaf.

I know this book will be informational and empowering to all of us who are part of the BRCA Community. As always, you can find more information, support and unconditional friendship at www.facingourrisk.org. There is also a Facebook page for FORCE , https://www.facebook.com/facingourrisk, visit and click LIKE when you are on the Internet.

Love and hugs,
Beth

Fridays for FORCE: 13 Ways of Community Service

Executive Director, Sue Friedman, posted this on the Thoughts from FORCE in her first blog of the year!

Thirteen Ways FORCE will Serve Our Community in 2012

On New Year’s Day we celebrated FORCE’s 13^th birthday! Over the course of this year, we will highlight the significance of this milestone with blogs that emphasize the theme of “13.”

As my first blog of the new year, I am excited to share 13 things that FORCE will do to serve the hereditary cancer community in 2012.

1. Our new book, Confronting Hereditary Breast and Ovarian Cancer: Identify Your Risk, Understand Your Options, Change Your Destiny is a Johns Hopkins Press Health Book that is available for preorder and preview on Amazon. The book will be widely available in February.
2. This month we are launching our inaugural FORCE Research Advocate Training (FRAT) Program that will train members of our community to become engaged in research review and safety panels. Training topics include cancer 101, basic genetics, introduction to clinical trials and research, patient protection, ethics, and more.  Space is limited; however, there is still time to apply for participation. Contact Lisa Schlager (lisas@facingourrisk.org) to apply for this program.
3. Save the date for our Joining FORCEs conference: the largest annual gathering by and for the hereditary cancer community. Our 2012 conference will be held October 18-20, 2012 in Orlando.
4. Our free “Be Empowered” webinars feature presentations by experts on topics of importance to our community. Our next two webinars will be on breast surveillance and updates from the IMPACT Study for men with mutations. Please check back soon for the dates and registration information.
5. More than 50 outreach groups in the United States offer peer support, information, and resources. FORCE also has international groups. Our outreach coordinators act as a point of contact and offer face-to-face support meetings for our members.
6. Our toll-free helpline provides peer support and resources for people who are concerned about hereditary cancer. We recently also launched our helpline for Spanish‐speaking callers.
7. Our Patient Experience Contact Tool is a searchable database of surgeons who have provided services to community members, who can connect one-to-one and share information about their experiences. If you have had surgery to treat or prevent breast or ovarian cancer, please consider entering your information.  If you are facing surgery, this tool can help you get feedback and referrals for surgeons in your area.
8. Our Genetic Mutation Database is searchable by mutation and ethnicity and helps connect people who have the same mutation.
9. FORCE will honor hereditary cancer previvors and survivors and recognize the challenges they face during National HBOC Week (the last week of September) and National Previvor Day (the Wednesday of the same week). FORCE made history in 2010 with its successful effort to pass a Congressional resolution officially acknowledging these significant days.
10. Our Post Mastectomy Photo Gallery shares images of women after mastectomy and reconstruction. Coming this Spring, we are updating the gallery to allow women to post their own postsurgical photos.
11. Show & Tell: The Book will be a new resource with photos of women after mastectomy with and without reconstruction. Available in the Fall, this resource will feature the models’ personal comments about their experiences, information about their surgeries, and references to relevant chapters in The Breast Reconstruction Guidebook by Kathy Steligo.
12. We will continue to advocate strongly for hereditary cancer research. For example, it has now been seven years since we introduced our community to PARP inhibitors as targeted cancer therapy for people with BRCA mutations. (Although initial studies have been promising, due to many challenges the research has not yet progressed to trials to seek FDA approval.) Check our advocacy pages in the coming months for updates.
13. We will continue our efforts to endow our Hereditary Cancer Research Fundto make a difference and improve prevention, screening, and treatment options for people with hereditary cancer through research. Stay tuned for opportunities to provide input as we assess our community’s research priorities.

Spotlight on Small Business, Faith and Hope Boutique

Having been part of a family business for over 20 years, I would like to take the time on my personal blog to shine a spotlight on samll businesses, especially one that supports the cancer survivor/previvor community.

This blog is focused today on Faith and Hope Boutique, located in both Abington and Philadelphia, PA.  When I was going through my upheavals in my BRCA journey, I ended up losing my left implant following my Prophylactic Bilateral Mastectomy (PBM) due to very bad staph infections.  I was a mess emotionally because of the way I looked with a skin flap on the one side just hanging there.  I had heard about Faith and Hope Boutique  through my plastic surgeon, Dr. Brian Buinewicz (http://www.phillyplasticsurgery.com/).  He suggested I visit and see what they can help with to even out the sides.  Never having been one to wallow much, I visitied my mom and she encouraged me to go over there since the store was around the corner.

I met Jeanette first, she is pictured on the left.  She heard my long, sad and involved story.  Turns out that she and her sister, Bonnie, also had the same PBM and used Dr. B!  During Jeanette's chemotherapy and after their surgeries, neither one of them could find a store that sold the camisoles and bras needed post-surgically.  Jeanette also wanted to find nice looking hats, pretty and stylish scarves and wigs when she was also under-going chemotherapy.  So, the idea for Faith and Hope Boutique was born!  They opened the Abington store in October, 2007.  Soon afterward, an opportunity arose to open another branch located at the University of Pennsylvania.  They alternate who tends after which store.  Everything they have is there to help cancer survivors of all types.  Since Jeanette is a survivor of breast cancer(4 years now) she is very aware of what a survivor is looking for in supplies.  Bonnie, a previvor, underwent the PBM at the same time as her sister to be a support of one another.

To quote the ladies, who care about their community as well:  "Our mission is to enhance the lives of women affected by breast cancer from diagnosis, throughout their treatment and living well - beyond!  Faith & Hope Boutique is a one of a kind shop, reaching out to Survivors & Friends who are transformed, but not defined by the disease." 

Speaking for myself, I was treated with care and compassion.  When I got my mastectomy bra and fitted with a fiber-fill prosthetic, I cried and so did Jeanette.  According to Bonnie, the crying happens all the time.  You feel transformed into a swan from an ugly duckling.  I felt "normal" again, like a woman. 
The tears were happy ones as well as relief.  As I got my fills on the left side with the tissue expander, I took out pieces of the fiberfill so the tow sides were even.  I have been back for post-surgical bras that fit without irritating areas where scar tissue has formed.  I have bought survivor-themed jewelry, car magnets, hats, scarves and clothing! 

AND NOW THEY ARE ACCEPTING MEDICARE and can direct bill for their patients!  What this means is that they are slowly getting approved with other Insurers too so they can direct bill for bras and prosthetics which are considered durable medical supplies.

There have been other friends of mine who have had other cancers other than breast cancer.  I had a gift basket made up and sent to one of my former college friends when she was undergoing her chemo.  The Internet site they have displays more of the popular items they carry.  I still use the Lindy skin care products that have a good SPF content since I am at a higher risk for melanoma due to being BRCA2+.

Both ladies are also very involved in their community.  Jeanette and Bonnie both help with Young Survivors Coaltion of Greater Philadelphia (http://www.youngsurvival.org/philadelphia) and host an annual "Courage Night" in October.  Jeanette also runs the YSC support group at Gilda's Club in Warminster (http://gildasclubdelval.org/).  Bonnie is very active in the Philadelphia Outreach chapter of FORCE (http://www.facingourrisk.org/).  The Abington store also hosts a Book Club the 2nd Thursday of every month.  You can also follow them on Facebook, Faith and Hope Boutique!  All of these venues have given me a chance to meet new friends and help where I can too.

Please visit either in person or online.  The two locations are staffed by survivors and previvors who have gone through the experiences and help those in need.
Abington location:
1915 Guernsey Ave.
Abington, PA 19001
215-885-1143  Hours: closed Monday, Tues-Fri 10-6, Sat 10-3

U of P location:
Perelman Center @UPHS
3400 Civic Center Blvd.
1st Floor, suite #1-680
Philadelphia, PA 19104
215-615-3321  Hours: Mon-Fri 10-4

And of course 24/7 on the web at http://www.faithandhopeboutique.com/

If you know of a family-owned small business you would like to see spotlighted, please forward me the information!

Love and hugs,
Beth