The critical need for ovarian cancer prevention research « Thoughts from FORCE

The critical need for ovarian cancer prevention research « Thoughts from FORCE

The link above will take you to the latest blog entry from Sue Friedman, Executive Director of FORCE, Facing Our Risk of Cancer Empowered.

Women who carry the BRCA 1 or BRCA2 genetic mutation run an increased risk of ovarian cancer over and above the average woman in her lifespan. Because of the opportunity to poll the members of FORCE and the BRCA community as well as women with a previous diagnosis and those with Lynch syndrome, we tried to develop a prioritization of the prevention of this silent killer.

Please read the article and share it with others. Ovarian cancer is sneaky. It is hard to test for it until it may be too late. The research and studies are ongoing to help identify how we can better save the lives of many women across the world.

Love and hugs,

Beth

Bucket List? Why Not! The First 10.

I got to thinking that life is too damn short and I wanted to create and examine a bucket list. My parents had one too and it had one item: See Australia. My dad died in 1989 but my mom got to their dream destination in 1995 and went with her sister. They spent 3 weeks there and had a great time in both Australia and New Zealand. Ten rolls of film have proven that point.

So, I am having trouble itemizing my list. Should it be done alphabetically? With importance being the deciding factor? Based on the probability of completing the line item?  Nope, I am doing it as they pop into my head!

1.  See Washington, DC again with Larry. Whether or not the kids or grandkids come along is not relevant. I want to see it with him, together. It will be different experiencing it through his eyes and mine.

2.  Visit Cooperstown and the Baseball Hall of Fame. When I saw it the first time, it was just the Hall of Fame. But there is so much more! The Farmers' Museum, Fenimore Art Museum, Glimmerglass Opera and the New York State Historical Society. I have done some research and it appears that we could spend more than a weekend and really enjoy the splendor of that section of New York State. By the way, on a historical note, the town is named for Judge William Cooper, father of James Fennimore Cooper, who originally purchased the land.

3.  Seattle, WA and the outlying area. Okay, I will admit, three authors I really love have written about the area: Stephanie Meyer, Twilight Collection, Nora Roberts, The Search and Debbie Macomber's Cedar Cove Series. Although Cedar Cove is not a real town, Port Orchard about whom it is based is there! Maybe in honor of Bella, which was my paternal grandmother's name and my namesake, I will visit the real Forks. I also have friends who live in that area as well as in Oregon.

4. Mt. Rushmore National Park!  Never been to South Dakota either so this can be pretty tremendous. There had to be a very good reason for artist, Gutzon Borglum, to have picked these mountains. Yes, another piece of trivia that rattled around in my head and a push to see his creation!  Other National Parks are further down on the list! While there, it will lead to.....

5. We need to see the sculpture of Crazy Horse in the Black Hills. This past June celebrated the 135th anniversary of the battle of Big Horn. A bit of combined trivia: Korczak Ziolkowski, he too an award sculpture, came to help Borglum with Mt. Rushmore. He was asked by the Chief at the time, Standing Bear, to design and sculpt a project memorializing the Indians of North America.  My art history teachers would be proud of what I have retained after all these years.

6.  NEW YORK CITY! I want a week to see so many things but maybe one day would suffice. I want to see NYC again as an adult. Wander around the MMA, Broadway with maybe a show and dinner at a NY Jewish Deli. I have never been to the Guggenheim so that should be in there too.

7.  Mystic Seaport, CT is a tourist trap after the movie came out but I need to see it.  On a trip to Newport, RI with my ex-husband, I wanted to stop on the way to or from and he wouldn't. So, I am going to see my denied pleasure and have some great seafood!

8.  While on the East Coast, I have never been to Boston.  Baseball season would be terrific...they didn't replace Fenway Park did they? Even if they did, I want to see the BoSox play. Boston Commons, the Swan Boats, tour of Harvard and JFK's library, the New England Aquarium, maybe the Boston Children's Museum if we have time. See! I have thought these things out!

9.  Newport, RI is very near to a very good friend who lives in Warwick. Then again, RI being so small, nobody lives too far away from one another! Larry has never seen the Mansions of Newport and I want to visit them again as well as Green Animals sculptural gardens. One of the best places I would bet to get a lobster roll and I aim to have one!

10.  Freeport, ME.  Take a guess, the first three don't count unless you have never heard of, you GOT it, L. L. Bean!  It is open 24 hours a day. Wow, shopping at the outlet whenever we want. However, as I have looked into that, nothing else keeps hours with L.L. Bean so better off going back to the motel and sleep until breakfast. Maine is as far north as we can get on the East Coast and I want to see the sun come up there with a great cup of coffee keeping my hands warm as my heart fills with nature.

So that is the first installment!  There are friends in all of these places that I can also visit while knocking things off of my list. I need to sit back and think of more but my mind is whirling on a weird axis as it is with of all these places.  Looking forward to sharing more with you!

Love and hugs,
Beth

FORCE June Updates & My 4th Foobversary

Changes at FORCE, Ovarian Cancer Early Detection Study and More

I cannot believe how time marches on! Just five short years ago, I was debating on having a Prophylactic Bilateral Mastectomy (PBM). During that time, I talked to my doctors, family and friends for their input. Two of my close friends are survivors and they both said if they had the option like I do that they would take it. Neither one wanted to see me go through what they did with chemotherapy and radiation and all the side effects. But I still felt like I was intruding on their experiences and needed to talk to someone who had tested positive for the BRCA gene mutation. I turned to the Internet and found many sites devoted to cancer survivors.

In 2006, while doing my research on the Internet, I discovered FORCE, Facing Our Risk of Cancer Empowered. This site was existed primarily for people with either a hereditary genetic mutation and/or a strong family history of breast or ovarian cancers. I was excited to be able to feel like I belonged!

BRCA2 positive tested, check.

Strong family history of BOTH breast and ovarian cancers, check.

Needed help, support and information without feeling like I was intruding on survivors feelings, check.

I found my place, I found a home where I could ask questions and get help dealing with not being a survivor but yet still having a very high risk of being diagnosed with cancer. I had already had my ovaries out in 2002 thereby reducing my ovarian cancer risk to less than 2% and cutting the breast cancer risk from 90% to about 50%. Because my father had breast cancer, it raised my risk. In 2006, while on my journey of discovery about my future PBM, I was still finding health professionals still only concerned about my maternal side breast cancer history and as recently as 2010, some still thinking the BRCA gene is related to the sex chromosome.

Due to the efforts of the volunteer members of FORCE, these myths were being dismissed. The GINA, Genetic Information Nondiscrimination Act, was passed. Prior to GINA, I had to make sure my doctors did not write anything in my charts about being BRCA2+ less I be dropped from my health insurance. Now, patients do not have to worry!

The term, Previvor, became the #3 new word according to Time magazine in 2007! By definition, a Previvor: A survivor of a predisposition to cancer. No longer not being here nor there, I have a place in a community called FORCE, Facing Our Risk of Cancer Empowered.

After my PBM in June of 2007, I needed to look for more help since I was going through terrible infections. The members of FORCE came through once again. One member in particular was Barbara Pfeiffer who is currently the CEO of FORCE. She was always encouraging me and told me to post on the message boards to other members so they knew not all surgeries were a cake walk. I am so very thrilled and proud that Barbara is still a strong presence with FORCE and take this opportunity to send out congratulations and Mazel Tov. Don't forget, I will always be here to volunteer as always!

So, in looking forward, I am still cancer-free and celebrating the 4th anniversary of my PBM, or my own term, Foobversary, on June 7th!

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

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