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 (Facing Our Risk of Cancer Empowered): About Us

FORCE (Facing Our Risk of Cancer Empowered): About Us:



'via Blog this'

Just browsing through the FORCE: Facing Our Risk of Cancer Empowered Website and was reminded of a very important segment that is offered, The Patient Experience Tool.

Ask yourself, how many times do you ask about a good book to read or which restaurant to try? Always asking for referrals from family and for important and inconsequential matters? Of course you do! So what would make choosing a Breast or Plastic Surgeon, hospital or genetics counselor any different?

This service is provided for and by volunteers and members of FORCE. Their personal opinions are there for anyone to take with them in helping to make an informed decision about their next step in dealing with Hereditary Breast and Ovarian Cancers. I myself have also provided information and very glad to share through my blog as well:

Fox Chase Cancer Center and Margaret Dyson/FRAP (Family Risk Assessment Program) is where I went for my BRCA testing (tested positive for BRCA2 in 1996) with Dr. Mary Daly.

(http://goo.gl/yDN6j for more info)

Abington Memorial Hospital (AMH) is my choice for surgery, especially since my doctors are on staff there. (http://goo.gl/YppSz)

Dr. Christopher Pezzi, also at AMH, Oncologic Surgeon, also a friend of mine. When he suggested surgery, I listened up since I knew he really had my best interest at heart. Moreover, he is a brilliant surgeon and has a wonderful reputation. (http://goo.gl/lgLQu)

Dr. Brian Buinewicz, Chief of Plastic Surgery at AMH. I cannot say enough about Dr. B! I had a rough journey with lots of setbacks and he and his staff were supportive and professional. (http://goo.gl/MduAR)

Betty Cummings, RN: She is the light of AMH in connection with Breast Cancer Support. She appeared at my hospital room door one morning and reached out to me with advice and help. Her information can be found on this url: http://goo.gl/f1y0B. Also on this page are links to "Look Good Feel Better" program by American Cancer Society, Gilda's Club at AMH and plenty of other information.

Remember, all these recommendations are totally subjective. Please! Remember this caveat for me and especially FORCE:

This website and the Registry service are for individual educational use only. Nothing on this site is or should be considered, or used as a substitute for, medical advice, diagnosis, treatment, or other information that could only be obtained by a face to face interview with a health care service provider. Any listing of a health care service provider’s information and/or views expressed in connection with submission of such information is solely the view of the Submitter and does not reflect the position of FORCE nor is anything on this website to be deemed an endorsement of any such doctor or health care service provider by FORCE. Use of any such doctor or health care service provider is engaged in by you at your own risk.

Love and hugs,


Beth

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