Breast Practices? Hello Facebook, Listen Up!

I carry the BRCA2 genetic mutation. I am, as well as millions of others worldwide, genetically predisposed to have breast and/or ovarian cancer. Additionally, both men and women have a higher risk of pancreatic and colon cancers and melanoma. 2007 I was one of probably 1000's of women globally who underwent mastectomies to save their lives. Before Rita, before Angelina, before anyone thought much of Facebook as a support system. 

Up until now, there were forums through very few organizations that we could express ourselves. Thank goodness for FORCE, Facing Our Risk of Cancer Empowered (facingourrisk.org). There, we could express our concerns, our joys, our anxieties. Even at their website, there were precious few examples of these surgeries to view. I found consolation and hope there. But what about real life photos in real time where it could be discussed?

Enter Facebook and the ability to have closed, private groups. Plus the policy that allowed photos of breastfeeding AND mastectomies. In case you didn't know, even though the one group that has over 4,500 members in their closed, private status, there are pictures that get reported as inappropriate. 

BRCA Sisterhood was created to be a safe haven to express ourselves and get help during these tragic times. How do we do we accomplish this without putting our own photos out there? In 2007, I wish I had that ability to take a photo and ask other BRCA mutants, "What is that?!"  For some reason, even after been presented with rules and guidelines of the group, some photos are reported, by our own group members! The result is that the Facebook and Group member is prevented from posting at all. 

Now you tell me, Facebook police, how will that member be able to take solace being placed in "jail" so to speak. You have just dashed any spark of light from this woman who was reaching out. Facebook has just denied its own policies because it's being run by robots. Where is the human interaction that is required to review these images? 

I'm saddened and dismayed that Facebook has been so reduced to a jumble of 1's and 0's like any other computer program. In these cases, I think there MUST be human intercession. 

We need more people to write about this problem. Protest! Shout out! Have my blog post and others go viral! 

Thank you! 💐

Angelina Jolie, BRCA and Saving Lives

Angelina Jolie did an amazing thing...she took control of her life. She made the decision to live. Like thousands and thousands of women, she has joined the ranks of the Survivors and Previvors to empower themselves by using the knowledge of their BRCA mutation status and today's surgical technology. 

Unlike my father who passed away from breast cancer, I took those life saving steps as well. He passed the genetic mutation to me. I tested in 1996 and was found positive for carrying it. That means I have approximately 85-90% lifetime risk of breast cancer and 50% lifetime risk of ovarian cancer. 

Whether you applaud Jolie's actions or berate her for them, it is essential for the BRCA population to know their options and to reach the millions out there who still need to know. I had the same surgeries in 2002 and 2007. The latter's pathology showed DCIS stage 0, the beginnings of breast cancer. 

I paraphrase my friend Olga Guzman Flores's aunt who put it succinctly, "If you knew the plane you were taking had a 50% risk of crashing would you still board?". 

The following YouTube videos feature Olga singing at a JoiningFORCEs Annual Conference, my friend Anne Parker, the inspiration for the film "Decoding Annie Parker", who speaks about hereditary breast and ovarian cancer and the third, another friend, film maker Joanna Rudnick and a clip of her documentary, "In the Family". 

Please watch, educate yourself and others and #ShareandSaveaLife. 

http://youtu.be/IJ4V8g1EteA 

http://youtu.be/pE7q7nBPIOE

http://youtu.be/ioJo1EaMmTc

Fridays for FORCE: A Bit Late!

So many things have been happening this past week, including my return to work after a 3 week leave of absence. In catching up, the Komen v. Planned Parenthood debacle occurred.

In response, there are many articles and opinions.

For my response, I have added pages to my Blog. At the top, you will see tabs. Please click on the one marked IMPORTANT VIDEOS. On this tab, I will update with more videos to look at. Right now there are just a few. But important they are indeed.

Happy viewing!

Love and hugs,
Beth

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.

FORCE Fridays: Help is Here! Find Your Local Support Group

Here is a link to help find a support group near you: http://www.facingourrisk.org/support/local_groups/index.php

I never put much faith in support groups. When my father died I was totally grief-stricken. My mother was even worse off. We were both counseled by friends and family to go to a support group and be among people who are experiencing the same thing. To put it mildly, they, well, they sucked! The Widow and Widowers group my mom attended was filled with women either looking for another partner or just stuck in grief mode and with men coming for the free food and maybe another caregiver. In my mother's own words at the time she said, "I am not looking for more dirty socks and sex. I want to move on with my life." As for me, I found the meetings with the family grief group at the hospital depressing and most were there to relive the life of their dearly departed. Don't get me wrong, I was sad, depressed and wanted to keep my dad's memory alive. But this was too suffocating.

So, when I found out I carried the BRCA2 genetic mutation, I was looking for some answers to my questions in my head. But I had a bad taste for the support groups. I thought I would try the Internet in 2006 when I was debating whether or not to move from heavy surveillance to prophylactic surgeries. I was already on Tamoxifen, a drug used to help ward off the cancer cells. I found loads of sites for breast cancer but since I had not yet been diagnosed, I felt like the proverbial square peg in the round hole. 

Then  one day, I was quietly surfing again, and I stumbled upon FORCE: Facing Our Risk of Cancer Empowered. I was actually looking for more information on prophylactic mastectomies and this website popped up. It was on the 3rd or 4th page which I normally don't venture to. But oh, my relief when I opened the page! There were my people! They got it! They knew what I was going through! There were message boards, live chat rooms and so much information to read. And one thing I did not expect, a local support group in Philadelphia. 

I was not in a rush to get involved with a face-to-face group after my experiences previously. But after making the decision to have surgery and the subsequent infections, cancer and multiple surgeries, I thought I would give it a try. There were 13 women plus the two Outreach Coordinators. This was very different. This group of women were all ages and backgrounds. Some survivors and mostly previvors. We talked, laughed, cried, talked some more. Found out the new trends, new information, news about FORCE itself. Then we had Show and Tell. We went into the kitchen and got to show our surgeries and tell about them. The rest of the group were encouraged to ask questions. Answers were given and more. Nobody felt alone anymore. We had sisters in the flesh, literally!

That was 2007. The Outreach Coordinators number 4 in our local group. At last count, there were over 200 women who receive emails and that we reach out to. The group has lists of doctors, hospitals and genetics counselors to interview and check out. We have one-on-one support before, during and after surgeries if the person wants it. There is a special part of the group that helps those younger women not ready for anything more than just close surveillance. The Outreach groups themselves have grown from 10 to over 60 and more are being developed as I write. There are even International groups now in Australia, Canada, England and New Zealand. I know that our Vice-President of Volunteers, Sandy Cohen, is trying to get more Outreach groups going all the time. 

If there is not a group available near you. please got to the URL I provided at the beginning of this post and check again. If they are too far away, here is an URL to go to so you can fill out the Future Network Sign Up Form:

http://www.facingourrisk.org/support/local_groups/future_signup.php

As always, FORCE family is here to help, support and provide love and information to get you through your journey as smoothly as possible. 

Love and hugs,

Beth

Pinkwashing is Year Round

Susan G. Komen for the Cure makes mockery of self with KFC pinkwashing campaign (opinion):

'via Blog this'

The above referenced article really points out the dichotomy of Susan G. Komen for the Cure. On one hand they want to get people to donate money to their Fund. On the other hand, they have almost any company endorse as long as they are willing to add pink to their printing press. Yes, it is as simple as all that. PINK, Pink, Pink. It is virtually all year round now, not just in October.

Also, another article I found (http://www.naturalnews.com/Komen_for_the_cure.html), links The Big K with Planned Parenthood. I am not seeing a relationship here. Why are they donating funds to them? I am not going to get into a debate on birth control, womens' rights, pro-life or pro-choice here. My point is that these funds, according to the Big K, are going to pay for mammograms and health checks for women. The basis for the donation deals with the reduced incidence of breast cancer when a pregnancy is carried to term. Turn the statistic around! Can it not be said that abortion is contributing to breast cancer? This is an argument that never should have been entered into by the two organizations.

I also found that in 2010, KFC was selling Buckets for a Cure, resplendent in their pinkness. You need to read the journalist's point of view. I agree with him that it seems that Big K is encouraging the consumer to eat the KFC fried chicken. Now, let us review this! What covers the chicken? White flour, salt and MSG along with the secret seasonings. The first three ingredients are quite harmful. As a matter of fact, MSG is a known carcinogen. Eating this fried food leads to obesity (not that I am one to talk, being seriously overweight) and that is proven to lead to increases risk of breast cancer as well as others. Frying at a high heat produces

acrylamides, toxic chemical by-products of cooking that are believed by manyhealthexperts to promote cancer (http://www.naturalnews.com/acrylami...). One scientific study, for example, demonstrated thateatingacrylamides boosts kidney cancer rates by 59 percent. Acrylamides are also linked to ovarian cancer. {Thursday, April 22. 2010, Mike Adams}

P. F. Louis writes in this article about where Big K's money goes (http://www.naturalnews.com/033783_Komen_for_the_Cure_pinkwashing.html) that the former CEO of Big K received $500,000 per year. Nancy Brinker, founder, has stepped in to take over but there are no figures pertaining to her salary. In the 2009/2010 fiscal year, they handed out teh following:

$141 million for education, $47 million for health screening, and $75 million for research. Fundraising costs and affiliate expenses were approximately $60 million with general administrative costs at $37 million.

Do not get excited about these monies. Not once has anyone been educated correctly about nutrition and what foods to avoid to help prevent breast cancer. There are doctors in this country and abroad who are working on drugs to help treat breast cancer but they have not received any funds. What about the thousands and thousands of metastatic patients out there? Any money going to help them? I have seen any reports on that front. Let us not forget the men who have breast cancer. My father died from breast cancer and the males who have a family history are not exempt. Big K does not recognize them to the best of my knowledge. It is only PINK!

Big K has been raising money since before 1982. Why, in all these years, have they not found the ever elusive cure? Of course not. Think of the corporate executives in the pharmaceutical industry, the chemotherapy producers and the radiation technology suppliers. They would be standing in the unemployment line right next to the mets patient who cannot hold a job longer than the respite in between chemo and radiation. 


Off to go fight other windmills kids! Sancho, saddle my horse and give me my lance and helmet. What color shall we use for the ribbons? Certainly not PINK!


Love and hugs,
Beth


P.S. Thank you to 

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

Instead of Buying PINK This Month...Consider This!

I know that there are many companies that have PINK merchandise and with the proceeds, there are Breast Cancer avenues that are funded.  I am up to my eyeballs in Pink! There is a veritable sea of PINK stuff out there starting in August, revs up in September and goes full tilt in October. Although it is agreed to be a "girly" color, I think over the years, I have had enough. And to top that off, my own father passed away after a valiant battle with Breast Cancer and I know he would rather have had another color to designate the disease.Yes, men get breast cancer but this fodder for another blog post!


Wonder how many of the other survivors feel the same way. Fortunately, FORCE: Facing Our Risk of Cancer Empowered supports both Ovarian and Breast Cancer so we have the offset with teal and pink. Thank goodness! 


But imagine what good the monies used to buy the pink duck slippers, or pink mouse, or pink alarm pad and many other accessories and clothing, was to be donated instead of lining the purses of the big corporations. 


FORCE has broken down where the funds go within the organization. I myself have benefited from a scholarship to the Annual JoiningFORCE's Conference twice. Please review the list and head to the link above as well as below the list, to send what your heart moves you.


Through monies donated by corporations and individuals, the following can be done:

$1,000 delivers the latest in BRCA research and information to 500 families.

$500 gives 60,000 visitors access to our website for one month.

$300 provides a scholarship to our conference to one person that could not otherwise attend.

$200 provides life-saving information to 100 people through our newsletter.

$100 provides phone-based support and resources via our Helpline for one month.

$50 provides a package of informational brochures to doctors offices and hospitals.

Donations to FORCE are tax-deductible. 100% of the funds go to the organization to continue our mission. Many companies will also match donations made by their employees.

Please ask your employer if your company has a matching gifts policy. FORCE Tax ID: 
65-0927702

Once again, here is the link to the donation page:

https://interland3.donorperfect.net/weblink/weblink.aspx?name=for&id=1

I appreciate any and all you can do!

Love and hugs,

Beth

Get Involved with GoodSearch

Get Involved with GoodSearch:


'via Blog this'

This is going to be the easiest thing we’ve ever asked you to do! To date, $149.89 has been raised! 

We just signed up with GoodSearch.com and now every time you shop online or search the Internet, a donation will be made to FORCE - Facing Our Risk of Cancer Empowered (Tampa FL)

Here’s how:

GoodShop.com works with more than 2,500 stores (including Target, Apple, Petsmart etc..) and every time you purchase something, a percentage will be donated to us! And, even more exciting, GoodShop also offers over 100,000 of the most up-to-date coupons and free shipping offers so you can save money at the same time. It’s win win.

GoodSearch is a Yahoo powered search engine which makes a donation to us each time you do a search.

Join the rest of our community in using these sites to help us easily raise money for our mission. Get started by clicking the “Become a Supporter” button on our profile page here!

As always, for information, support and where to meet your local FORCE members go to www.facingourrisk.org!

The local Philadelphia, PA Outreach Fan Page on Facebook:

http://www.facebook.com/pages/Philadelphia-PA-Force-Facing-Our-Risk-of-Cancer-Empowered/164827966909997

Visit and click "LIKE"! Also follow us via Twitter: http://wefollow.com/PhillyFORCE

Thank you for helping raise much needed funds throughout the year!

Love and hugs,

Beth

Teal Toes and the Silent Whisperer

September is among other things, Ovarian Cancer Awareness Month.  People across the world are celebrating and marking it in many different ways.  Some are painting their toes teal and there are lists of various manufacturers who will donate back if you buy their polish.  Here is a list of some companies who are helping to support Ovarian Cancer National Alliance (OCNA) as posted on the website, Tealtoes.org:

Diamond Cosmetics -- They have just come out with their newest shade "Don't Teal My Heart Away" and are donating 25 cents per bottle sold to the National Ovarian Cancer Coalition. 

Barielle's new Wildflower Collection donates all proceeds to OCRF.  Purchase directly fromOCRF's store.  See Beauty Judy's shots of this collection.

Priti Polish is supporting Ovarian Cancer Awareness Month with their Tulip Tree Teal.  They are donating 10% to Nancy's List.

Karma Organic Spa is also carrying the "Don't Teal My Heart Away" and donating 20% toNOCC.

In order to express support of Hereditary Breast and Ovarian Cancer Week (HBOC), suggest to paint a pink ribbon on top of your teal toes to support those with BRCA gene mutations!

There are teal silicone bracelets to wear, teal ribbons in a variety of styles, bumper stickers...all things are available these days as they are for other Causes.

One of the utmost things to remember is that Ovarian Cancer is a "silent killer". Many women do not know they have it until they are at Stage 3 when most hope for remission is a low percentage. Many times, symptoms of other diseases are akin to those of OVCA. and your GP may not attribute them to the right thing. Sometimes the symptoms of bloating and unrelieved gas pains sends you to a GI specialist instead of your GYN. Even pain with intercourse may be overlooked or ignored because of the embarrassment women can feel.

The above symptoms NEED to be mentioned to your GYN.  If you are at high risk due to family history or carrying the BRCA genetic mutation, insist on the CA-125 blood test every year!  Although this is not the very best of detection devices, it takes some of the guesswork out.

Along with the blood work,  the wonderful (I am being sooo sarcastic here) trans-vaginal ultrasound is a must. Yes, it can be extremely humiliating if you have never had one before and if the technician is totally in-compassionate, you need to steel yourself to go back the following year and the year after and so on. This test may find growths or possible malignancies and lead to finding out how severe or inconsequential they may be. Without the test, you are asking to flip a coin and decide which can be even more detrimental to your health.

If you or someone you know complains of any of the symptoms I described above, please get to a medical professional. Better to test and breathe easy that it is nothing. 

Remember, Ovarian Cancer is stealthy, it is termed the "silent killer" for a very good reason.

OVARIAN CANCER IS SILENT,

IT WHISPERS AND YOU NEED TO LISTEN TO YOUR

BODY!

Please remember I am not a doctor or medical professional. If you EVER have any symptoms or problems, PLEASE see your health care provider ASAP!


Love and hugs,
Beth

Survey on ovarian cancer risk management research for women with ovaries

Survey on ovarian cancer risk management research for women with ovaries

FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org), is always on board with Advocacy programs. This survey was created so that we can attest for the need for continued funds for Ovarian Cancer research, risk management and treatment.  Below are the parameters for the survey.  All you need to do is click on the link above to get started!  And of course, please pass this along!!

Survey on Ovarian Cancer Prevention Research

Researchers are considering studies using medication or salpingectomy (removal of the fallopian tubes) to lower ovarian cancer risk in high-risk women. FORCE is partnering with researchers to understand more about women's attitudes about participating in ovarian cancer prevention studies.

This survey is open to women who:

• have a BRCA mutation, Lynch Syndrome, or ovarian cancer runs in their family
• have not been diagnosed with ovarian cancer and still have one or both ovaries

The surveys need to be completed by June 1st so that our Executive Director, Sue Friedman, can also present these results at our Annual JoiningFORCE's Conference June 23 to the 25th.

Love and hugs,

Beth

What Attending the 2011 Joining FORCE's Conference Can Mean

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

The video about the Joining FORCE's Annual Conference shows so many important reasons to attend. This coming year will be my third time attending.

The first year I went, I really needed the affirmation that I did the correct thing. I had gotten the results of my being BRCA2 positive back in 1996. I had genetic counseling. It is so very important to get that. I was given sort of a road-map to what the future would encompass as far as my BRCA status. My choices were varied: from surveillance to surgery. In 2007, I opted to go the whole 9 yards and have a Prophylactic Bilateral Mastectomy (PBM). Since I had so many problems along the way with the PBM, I needed to feel that I made the right decision. I had lost the left implant in August of that year and in 2008 I got to go to the Conference. During the intervening time period, I posted on the message boards and in the chat room at FORCE and joined the local Outreach Group.

Quite honestly, I felt pretty beat up! I was cancer-free but feeling very let down by my body. But being surrounded by other women who had traveled the same road gave me my affirmation. I met several women with whom I had only communicated over the Internet or by phone. By taking the time to attend the Conference, I felt the impetus to go back to Philadelphia and get the word out about FORCE and the BRCA Community. I learned more about the genetic mutation that put me and my family at the increased risk. I also got to view the then unreleased movie, "In the Family". Several of us sat in the back of the room and just cried. Joanna Rudnick, the producer and star of the documentary was there and I was so proud of how FORCE helped to make this film a success.

I also met another FORCE member who befriended me was Diane Tropea Greene. She is the author of "Apron Strings: Inheriting Courage, Wisdom and . . . Breast Cancer". She and I "met" on the FORCE message boards and she and one of her sisters attended the Conference and she signed her book. What an inspiration. This is such a good read; you laugh and cry and I found myself nodding my head at so many shared instances in life.













The second year I attended the Conference, it was moved from its original site in Tampa to Orlando, FL. The attendance had grown from about 250 to 500! I felt honored to again be selected to receive a scholarship to attend. I went with one of my close friends who happens to carry the BRCA1 gene mutation and also has had Breast Cancer affect her family. We learned even more at this Conference. The biggest part was growing the Outreach Group in Philadelphia, volunteering opportunities and again, feeling like I belonged to a group that understood my decisions.

At each Conference, there is a "Show and Tell" room, just like we have at most local meetings. Only this years' room was spread into at least 3 rooms. Each woman shows off her mastectomy along with her reconstruction or lack thereof. The year before I had gone there with one implant and one skin flap where the other had been. This time I had a completed set! We shared, showed and commiserated. Other women were given the opportunity to ask questions about different kinds of surgeries, procedures and end products. Not every set was perfect and we wore our scars with pride! It felt kind of strange, walking around with my top off, getting "felt" by other people, and talking honestly and openly about BRCA and my PBM. I almost went downstairs to the main floor of the suite without my t shirt! Good thing I was stopped on the stairs.

Again, I got to meet with others not only from the FORCE website but also from the Facebook pages as well. Sounds trite, but it IS good to put faces to names. I caught up with old friends and met many new ones. I learned some very good points at this Conference, different from the last. Each year there are always new sessions and I tried to attend them. I found out that I like to write and Kathy Steligo, author of "The Breast Reconstruction Guidebook", conducted a very intense session on writing.

One of the highlights of the Conference for me is the Saturday Morning Round Table Discussion. Each speaker has a table, obviously, and makes themselves available for a question and answer session. It is so wonderful to get more in-depth with the most knowledgeable people in their field.

I am hoping to get another scholarship this year and go again. New discussions are waiting! I also am very interested in learning more about fundraising on behalf of FORCE. I do what I can but I know there is so much more. I want to find out about getting FORCE's name and mission out there in the public eye. The BRCA gene mutation is so very misunderstood, by laypeople as well as professionals. If I can change my area of the world, then I feel I have done my part. If I can reach out to just one person and ease their mind about their BRCA status or impending surgery, then I have accomplished more than what I hope.

Love and hugs,
Beth

When "Thank you" is Just Not Enough

Today marks the very first Annual National Previvor* Day, in the middle of National HBOC (Heriditary Breast and Ovarian Cancer)Week. Due to the efforts of Sue Friedman, Executive Director of FORCE and Representative Wasserman Schultz, H. Res 1522 was passed UNANIMOUSLY in Congress. Cancer does not recognize party lines, race, creed, nationality or sexual preference. I am proud of our politicians that they threw aside biases and voted to approve this very special milestone.

*Previvor (according to Wikipedia)

A cancer previvor is a person who is not diagnosed with cancer, but has a survived the predisposition, or higher risk, of cancer due to a certain genetic mutation.[1] As such, this is the first generation in human history who, armed with information about a predisposition to a cancer after opting in to DNA testing, can make informed choices prior to cancer diagnosis.

Like many others in my sphere of influence, I witnessed first-hand the toll cancer takes on a loved one. My father passed away from Breast Cancer in 1989 after a 5 year battle. In 1996, I found out I carried the BRCA2 Genetic Mutation. This meant I had a predisposition to both Breast and Ovarian Cancers in addition to my strong family history. In 2002, I had my first of many surgeries to remove my ovaries, ending one stage of my womanhood. Being 42 I was not in favor of more children but I still felt that tug of never being able to have more and having that choice stripped away from me in deference to avoiding Ovarian Cancer and reducing my Breast Cancer risk by half.

By 2006, I had had several scares and a multitude of mammograms, biopsies, MRi's, ultrasounds and my stress level was at an all-time high. Having never had cancer, I felt out of place in the survivor support groups both in person and on the Internet. My fiancé convinced me to seek another opinion and I went to an oncologist for help. I was put on Tamoxofin as a prophylactic measure. This was met with mostly contempt from survivors along with comments such as, "You don't know what it is like to be a survivor", "How can you even begin to compare your life with ours". I was in tears because I had nowhere to turn for help.

I began investigating the Internet with a ferocity. I discovered FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org) and found a home! I was in tears again but these were happy tears! They got me! I was not the only one out there. I heard discussions about genetic testing, prophylactic surgeries, reconstruction (or not), talking to family members and an overall feeling of belonging. In 2007, with love, support and information from my family, friends and my FORCE Family, I had the next of a series of surgeries to have my breasts removed and reconstructed. I encountered many speed bumps along the way. When someone would tell me I was "mutilating" my body, I had FORCE to turn to. In 2008, I attended my very first JoiningFORCEs Conference in Tampa, FL. This was followed by the next one held in Orlando, FL. Each trip, I learned more and more and brought back more to share with my fellow BRCA community in Philadelphia.

In the words of Dr. Friedman in her recent blog entry,

An estimated 750,000 people—about .2% of the entire U.S. population—carry a BRCA mutation. Not a large group compared to our overall population, yet we shoulder about 10-14% of the breast and ovarian cancer burden, and our cancer risk is some of the highest known to science.

. I am part of that percentage.

The importance of the HBOC Week and Previvor Day cannot be felt as poignant as it is with those of us in the BRCA community. This will help pave the way for more research and hopefully, a way to reduce and maybe even eradicate Breast and Ovarian Cancers in, perhaps, my child's lifetime. FORCE has brought an empowerment and sense of belonging to me more than any other group could possibly have done. Out of this has sprung a wonderful new book, released during HBOC Week, Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port, a FORCE member.


We have also been fortunate to have a view from another FORCE member and friend, Diane Tropea Greene, Apron Strings: Inhereting Courage, Wisdom and . . . Breast Cancer. This chronicles a family of sisters and their journey through their family's ordeal with cancers.
Apron Strings: Inheriting Courage, Wisdom and . . . Breast Cancer

My friend and film-maker/researcher, Joanna Rudnick, was prompted to make a documentary following her family and her own search for answers to make an informed decision after learning she carried the genetic mutation. Her film, In the Family, is incisive and educational in a grounded way. I have since become good friends with one of the FORCE women in the film and glad we met 3 years ago!


I am having trouble typing through the tears forming. Had I never found out about my mutation I carry, my surgeon was almost certain I would have had a bout with Breast Cancer at some point. It was a matter of when, not if. As a matter of fact, they did discover a stage zero DCIS in my pathology. A Bilateral Prophylactic Mastectomy would have been the treatment for me and that is exactly what I had done. I am here, defying my risk of 85-90%, seeing my child grow up to become a man and graduate next year from high school. This year, we celebrated our 5th wedding anniversary, and I never would have gotten here if not for him. I am happy to be able to celebrate this momentous occasion of HBOC Week with my fellow FORCE Members and look forward to many, many more!

Love and hugs,
Beth

Book Review: "Apron Strings: Inheriting Courage, Wisdom and . . .Breast Cancer"

I have been very fortunate to have met brave people. Those that have battled Cancer are among the most brave of all. The first who comes to mind is of course my Father. In his mid-fifties, he must have known the lumo he found on his breast was Cancer. It was ignored as was my Father's way with anything that foreshadowed a problem. After he went through a battery of tests, his worst fear was confirmed, it was Breast Cancer. He went in for a mastectomy and endured 5 years of weekly chemotherapy and various procedures meant to end the Beast, Breast Cancer.

I was very proud of my Father. He never really complained. And because of our family history of Breast Cancer, we participated in the 1st of many tests for the BRCA gene mutation. My Mom was able to get the frozen section of his pathology and it was tested as well. My results as well as Dad's came back BRCA2+. The ensuing genetic counseling helped prepare me for a course of action.



In the interim, I researched the Internet and discovered FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org). Through this wonderful organization devoted to families with history of Breast and Ovarian Cancers, I also found a new friend, Diane Tropea Greene.

Diane had written a book, "Apron Strings: Inheriting Courage, Wisdom and ... Breast Cancer". I looked in the local book stores and couldn't find it. While Diane and I emailed and talked over the phone, we got to know each other. She also sent me a signed copy of her book. She also came to the Joining FORCES Annual Conference with one of her sisters. I recommended the book to everyone who I came in contact with at the Conference as well as back home.

Diane writes:

Apron Strings: Inheriting Courage, Wisdom and... Breast Cancer is my family’s story of hope and survival against seemingly insurmountable odds. It is written, in part, to honor the memory of family members who so bravely faced their cancer with courage, grace and dignity. It is because of their strength that my generation had the perseverance to delve into our past and make tough and inconceivable choices, to emerge victorious. Their defeat has enabled our victory.

The book starts out at a family member's funeral, just one of many that have dealt with cancer. Diane herself is also a Breast Cancer survivor and the journey leads her to Genetic Testing. She discovers she too carries the BRCA gene mutation. This can and does often lead to an increased risk of not only Breast Cancer but also Ovarian, Pancreatic, Melanoma and Colon Cancer among others. The risk of the average woman is 8-12% over her lifetime. If a man or a woman carry the BRCA muation, it can increase their risk up to 90% or higher. This is another kind of journey that Diane, her sisters and other family members have chosen to take to reduce their risk.

At times very sad but alternately funny, Diane recants a true-life story of one extended family's ordeal with Cancer and how they are handling it. How do they tell the various cousins about the testing results? how can they try to halt Cancer's path in their family? And what of the next generation of children already getting to the age they might want to be tested.

I applaud Diane for being able to get the word out about Breast Cancer and beating the odds!