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

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

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