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

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

22 Years Later

February 19, 1989. It was a cold and very rainy day. I truly believed that the angels up above were crying along with us as our family buried my father. His death certificate stated that he died from Hepatic failure. His liver could not hold out against all of the chemicals pumped in over the course of chemotherapy he received during his five year bout with breast cancer.

A man with breast cancer? Yes, my father was diagnosed with breast cancer. What was really amazing medically was that in the year 1984, the oncologist my father saw had four other men with breast cancer at our small (in those years) local hospital. Every week, my dad had an infusion of chemo as well as taking tamoxifen. Even though the doctor told my parents that dad was only expected to live for 6 months, he fought valiantly for 10 times that prediction.

Today, he would have received dose dense chemotherapy and maybe even radiation. What he went through seems so antiquated compared to today's therapies. Due to his bout with breast cancer, I was tested at Fox Chase Cancer Center and routinely participate in the Margaret Dyson Family Risk Assessment Center (now known as the Risk Assessment Program, http://www.fccc.edu/prevention/riskAssessment/staff.html). My father's frozen tissue sample from his original pathology and my blood samples determined that we both carried the BRCA2 genetic mutation. In 1996 when I found out this information, I received concise and informative genetic counseling as do all participants in the RAP at FCCC. We mapped out a plan of action and so far, as I have followed it, I am cancer-free even having discovered that I was at Stage 0 with DCIS at the time of my prophylactic bilateral mastectomy.

My father's death was a horrible experience but through it and less than 10 years later, I was able to avoid what my breast surgeon had told me was a certain outcome; it was only a matter of time before breast cancer would rear its ugly head within my body.

So as I recite the Kaddish prayer during my dad's Yahrzeit, I miss him very much and probably spend at least a week being miserable and unhappy at the loss of a most wonderful man, father, son, uncle and cousin. However, his legacy genetically has helped those he left behind with a knowledge that allows us to overcome the high risk of disease that has plagued the family through several generations.

If not for Dr. Daly at FCCC and the support and information at FORCE, Facing Our Risk of Cancer Empowered (www.facingourrisk.org) I may not even had gotten to age 51 and sitting here writing about genetics and breast cancer! Thank you Dadddy. Though you have missed meeting your grandchildren and other new family members, because of your sacrifice and love, we remember you at this yearly celebration of your life.

Love and special 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

Breast Cancer Awareness Body Painting Project

The Breast Cancer Awareness Body Painting Project (BCAPP) is an ongoing series designed and created to raise awareness and funds for Breast Cancer causes. Meet the founders and learn more about the project on this episode of ArtStreet! Please check out this video by clicking on the link below:

http://bit.ly/hqeMqV

So far 23 Brave Survivors have stepped forward to be painted and photographed and we are on the way to 50 for the final book.

This Channel will contain "Time Lapse" or "Fast Motion" sequences of most of the survivor models in the project. These videos will show the start to finish process of how these women were body painted for this project to share themselves and their stories.

Hats off to Artist/Photographer Michael Colanero, originally from the Philadelphia area and now living and working in Ft. Lauderdale, has helped to develop this project. He is assisting on raising AWARENESS as well as FUNDS for Breast Cancer. Please visit this worthwhile project at http://www.cafepress.com/BCABPP as well as his gallery in Ft. Lauderdale, FL:
UNCOMMON Gallery
2713 East Commercial Blvd.
Fort Lauderdale, FL

Thank you Michael!

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

What Breast Cancer Survival Looks Like: Caryn Rosenberg 2 Years Later - MORE Magazine

What Breast Cancer Survival Looks Like: Caryn Rosenberg 2 Years Later - MORE Magazine

I am posting this article in tribute of my dear friend and our newest angel, Caryn Rosenberg. She fought with dignity, humor, love and grace. You will be missed by all of us. You commanded us at your party to celebrate life and that I am attempting to do. You may not have been a mom but looked out for one and all like we were all family.

I am also posting this article in honor of Steven Rosenberg who exemplified the role of partner and care-giver. You were loved to the extreme by Caryn and glad to be able to call you friend.

RIP Caryn, 1960-2010.

Love and hugs,
Beth