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

Five Movie - Official Site - myLifetime.com

Five Movie - Official Site - myLifetime.com:

'via Blog this'

I am watching the movie, "Five". I am on the third segment as I write this. As usual, I am crying. But I wonder if I am crying over the characters on the small screen. Am I crying over the loss of my father who passed away from breast cancer in 1989? Am I crying over the battles fought and won and lost by my friends? Some are more than likely happy tears for those that have survived chemo, radiation, surgeries and pain but are still here to tell their own tales.

There are times that I wonder if breast cancer is just lurking under the surface. I am at the same age my father was battling his breast cancer. So are the surgeries and chemo-prevention enough to chase away that genetic and hereditary predisposition? I am so full of doubts. I find myself volunteering for anything I can do with FORCE: Facing Our Risk of Cancer Empowered. This is in some way, a reaction to my fears. FORCE helped me through the worst of the times when I had my mastectomies. So giving back is what I need to do.

I also find myself very short-tempered. I erupt, mildly at times and others when lava seems to flow venomously out of my head out loud and also on paper. I have this dread lurking. I should be celebrating the fact I am here and alive and have a beautiful family. And one of my friends from FORCE, Caryn, told me once I am feeling survivor guilt. It is beginning to really invade my thoughts on a regular basis.

Survivors have this feeling of waiting for the other shoe to drop, waiting for breast cancer to rear its ugly head as a metastasis in another part of their body. And it is deemed OK. But is it OK for someone who "dodged the bullet" to wonder if it really is not going to happen? It has struck in a straight line from my paternal great-grandmother, grandmother and then my father. Every one of my family members who opted to be tested for the BRCA gene mutation, has tested positive. It seems to run very strong in our family, even one of my dad's cousins died from ovarian cancer. Our chances are higher than the average person's of developing cancer. The average woman's chance of developing breast cancer is one in 8. As my son just asked me, "Does that mean if you lined up 64 women, 8 of them would have cancer?" More than likely yes.

Because I carry the BRCA2 genetic mutation, my son has a 50% chance he will carry it too. He is now 18 and can make the choice himself to test or not. He has indicated that he wants to. But before he does, I will make sure he has genetic counseling at Fox Chase Cancer Center which is where we were all tested at the Dyson Family Risk Assessment Program (FRAP). I am the only female in my generation and my niece is the only one in hers. She is way too young to be tested yet. I feel guilt over this as well, that I may have passed the gene on to my son and perhaps my brother on to his children.

As I ramble on, I am reminded of the last line of the tile on the wall in the last segment, "Hope for the future." This needs to slowly replace my doubts and concerns. I will never stop helping to Spread the Word and Save a Life through FORCE. Men and women both need to be aware of their family history. Get genetic counseling to see whether or not there is a need for testing and if there is, listen to what they have to say. Better yet, take your significant other or friend to help absorb what you hear. Because like in the "Lily" segment of the movie, sometimes you don't hear the doctor and you need that support to help you! And remember FORCE is here too, www.facingourrisk.org!

Thank you to the directors and producers who made this movie with taste and warmth!

The wall as shown in the last segment, "Pearl".

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

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

Visiting Cancer Again

The many social media outlets are there to help with a variety of issues including, but of course not limited to, Cancer. One is drawn to what one needs to research or develop a support system to help them cope. Any disease or psychoses has one or more website and each website has a way for the anonymous member to communicate. This would be a message board, forum or private messaging. When I entered the term "Breast Cancer" into Google one afternoon, there were over 42 million results returned. Although I am sure many are duplicates and some are just out there to sell some miracle cure, I had found a few to be helpful without expecting any in return from its members except the occasional donation to help keep it fiscally sound.

I, however, did not find these websites particularly helpful to my situation. They all dealt with people who are Survivors, who have survived the ordeal of cancer and are still living.

By comparison, the term "BRCA" (Breast Cancer Gene) returned 145.000 results, narrowing my search for information further. FORCE, Facing Our Risk of Cancer Empowered showed up fourth on the list. So I wandered over to www.facingourrisk.org and checked it out when I was first told I carried the genetic mutation known as BRCA2.

Ok, this blog has a title about Cancer. Where was I going with this?

Yes, here is the thing. I recently had a conversation on instant messaging with a woman I met through breastcancer.org, also known to some of its participants as "BCO". We had met in the real world several years ago with some other women from BCO at an informal get-together for lunch. She is a breast cancer survivor. Last year, it revisited her life. She caught it early and had another mastectomy and reconstruction. The oncologist has suggested to her to take Tamoxifen to help suppress any wandering cancer cells.

She told me that she gave up on the breast cancer sites because she felt there was too much "gloom and doom" and all she wanted to know was what others experienced as side effects to the Tamoxifen. I sent her to look at FORCE and if she couldn't find the topic, post about it herself. The conversation circled around my experience and I told I took it as a preventive measure after finding out I am a previvor. She had no idea what I was talking about so I gave her a short version definition.

For those inquiring minds out there, you can educate yourself as well as others about the word!

I am what FORCE (Facing Our Risk of Cancer Empowered) calls a "PREVIVOR".

By definition found on the FORCE website:

Cancer previvors are individuals who are survivors of a predisposition to cancer but who haven’t had the disease. This group includes people who carry a hereditary mutation, a family history of cancer, or some other predisposing factor. The term specifically applies to the portion of our community that has its own unique needs and concerns separate from the general population, but different from those already diagnosed with cancer.

FORCE coined the term previvor in 2000. Since then, the term has been adopted by many high-risk women, healthcare providers and researchers, and was named by Time magazine as one of its top 10 buzzwords of 2007.

As always, I feel so thankful for all that FORCE has done for me and my family. I am glad to pass on information and direct people to its website. I cannot help the entire world but I am doing what I can, one person at a time, in my small corner!

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

The Past Year Review

I have now passed the mark on being 50! Pretty uneventful. Nothing happened to change the world just because one more person is now eligible for AARP. I gained no more wisdom than I had the previous 49 years. I have not written the Great American Novel, hosted a cooking show or found a cure for anything.

Here is what I did glean from my past Half Century and this year:

1. I remember to recite the "Serenity Prayer" when vexed. In the time it takes to say it, I am either no longer at odds or calm enough to deal with it.

2. The speed limit sign on the Garden State Parkway is just a very mild suggestion to NJ motorists.

3. There is no way to stop, alleviate or slow down the aging process. We must grow old gracefully if we can and spend your hard-earned money on helping others if you are so fortunate as to have that kind of income. (My apologies to Dr. B!)

4. PAY IT FORWARD! If someone helped you, please remember to try and do the same for someone else. This does not have to be lauded to the public on Facebook, Twitter or anywhere else on the Internet. If you did it, savor the self-knowledge.

5. The phrase my dad loved to use, "Never try to teach a pig to sing. It wastes your time and annoys the pig", echoes in my mind at this year's end. In other words, I learned to pick my battles much better. I still make mistakes with this but find it easier to sleep at night.

6. Saying good-bye to friends as they become Angels in our midst is harder than I thought. Two women who bravely fought Cancer have been laid to rest. I remember how they touched my life and impacted it so well. Goodbye Caryn and Janet. You are missed.

7. There is no way to argue with teenagers; refer back to #5!

8. We are all capable of doing great things. As a positive example, I have a friend from high school who participated in the Iron Man event and she did exceptionally well. Another has made a name for himself in the surgical oncology field and has saved countless lives of our fellow alumni and friends. Going above and beyond is admirable to strive towards.

9. I learned how to blog, tweet, use the Nook and NookColor and develop a website!

10. Read a book not in your usual repertoire. Flex those brain cells. Treat them like your muscles; you lose them if you don't use them!


11. Finally, I realized that nobody will make things happen except for YOU. The best advocate is your own voice. NEVER stop being proactive in regard to your health and enrich your life with knowledge. As we say in Judaism, "Be a woman of valor."

As always, I still like to promote FORCE on my blog and will continue to do so. If just one person's life can be made into a longer one, I have served a great purpose and higher purpose. Please share any of the links on the FORCE website with others.

The FORCE website is a wealth of information. This link shares a brief, very clear overview of how our "genes" work. Read on ....Hereditary Cancer and Cancer Genetics

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

"The Big C": A Drop of Humor?

I just saw a preview for a new series on Showtime.  It is called "The Big C" and stars two of my favorite actors, Laura Linney and Oliver Platt.  This is the link to see a short preview so you can judge for yourself.

 http://www.sho.com/site/video/brightcove/series/title.do?bcpid=69609888001&bclid=69534010001&bctid=69706721001

I am not entirely sure how the cancer survivors out there are going to view this.  Anything expressed remember, comes from my own opinion, no facts unless I can back them up are being stated.  As a previvor, one who has a hereditary or genetic predisposition for cancer but has not been diagnosed with cancer (see FORCE, Facing Our Risk of Cancer Empowered, http://www.facingourrisk.org/) I can see many issues evolving. 

There are many schools of thought and I have a toe skimming in many of them.  I agree that Life is not all seriousness and we need to add a dollop of humor in order to be able to get through Life less scathed.  Gilda Radner once said that Cancer does not like to laughed at, I am paraphrasing.  I have heard stories of cancer patients who would rent the Three Stooges Colection of movies and sit and watch and laugh.  In my father's case, he and Mom used to watch Abbott and Costello films at every chance they had.  Laughter is the best medicine so they say.  The truth really is that it only takes 2 muscles to smile and many, many more to frown.  So maybe laughter will not cure cancer but it makes it a bit easier to get through it.  Anyone who saw the movie, The Bucket List, can remember the bittersweet laughter shared by the two main characters.  My own reaction to ANY kind of stress or sticky situation  is to tell a joke or make people laugh.  I may interject humor too much but I would rather be distracted in that way.

Humor can definitely break the ice.  My uncle always started a speech before a group with a joke relevant to his subject and the audience.  But what about cancer is funny?  The other view, not really against humor, can be seen as more serious rather than being negative.  The treatments, procedures, decisions, plans and sacrifices are certainly not to be taken lightly.  Too many lives will be touched.  The world's view of a cancer patient has changed but laughter is not always associated with them.  More often fear, anger and pity are the feelings present.  Not to make light or even be sarcastic about a patient's feelings regarding their disease, but the family and friends surrounding them tend to be cautious at times, not knowing what the reaction will be until that first time they encounter the situation.  I was witness to my father's cancer journey.  Maybe today with the dose-dense treatments, he would have survived.  One cannot use 20/20 hindsight with the past like that.  So what does one do when faced with a diagnosis of cancer?

It is a very personal choice on how that patient decides to live their life.  Over the years, I have been fortunate to know many warriors and glad to say a huge number of survivors.  Some stay in denial a long time.  There are those that plan every single minute they have to either live the fullest or make sure all is in order "in case" they don't survive.  We also have patients who take it in stride and resolve to not let cancer get the best of them.  Are any of the choices right or wrong?  Who is the judge on that?  Who even has the right to presume the answer lies elsewhere for that patient?  The answer lies with each individual heart.  I marvel at the woman who sits stoically through chemo treatments right next to the one whose friends have shown up to give her a makeover while being infused.  The dichotomy happens all the time.  Each patient's personality is the key to how they handle their situation.  As a previvor, I think we go through similar though not entirely the same reactions. 

OK, so what about the TV series?  I will wait until it comes out on Showtime to make up my mind.  I am hoping it will treat cancer with the respect, fear and courage it deserves.  Yes cancer does derserve all of this.  If not, it can take over your life and love.  Cancer can demolish it.  But only if you let it.  That was how my Dad fought against Cancer.  If I ever am diagnosed, I will be just like my Daddy, face it and deal with it every day and take it in stride.  And in my opnion, the best way to prevent that from happening is to laugh.  Laugh so hard that it hurts the sides of your face.  So very hard you have to do the squeeze your legs crab walk to the bathroom to avoid an accident.  Laugh until you cry.  Then have a good cry and put in your favorite comedy, cuddle up with your family and friends and start the laughter all over again.

Love and hugs gang,
Beth