Hereditary Cancer and Cancer Genetics

Hereditary Cancer and Cancer Genetics:

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This week is being celebrated as National HBOC (Hereditary Breast and Ovarian Cancer) Week. Additionally, today especially is Previvor Day. This has so much significance to me personally and to all those who are affected by these cancers in their family. The definition of Previvor: (n) A survivor of a predisposition (or increased risk) for a disease such as cancer.  I am a Previvor and grateful for the chance to be here to participate in the week and the day itself.

Today is also the beginning of Rosh Hashana, quite literally, the head of the year. It is the beginning of the Jewish New Year, 5772 by the Jewish calendar. I am very proud of my Jewish Heritage and this is a time of year for family and reflection. It is said that God reviews our lives between now and 11 days on Yom Kippur, the Day of Atonement. While we as Jews confess our sins of the past year, we ask God to forgive us and inscribe us in the Book of Life for the coming year. I have many items to check off on my list, I am not a perfect person after all, and hope God can see the way clear to forgive me.

So what ties HBOC Week to the High Holidays? Being of Ashkenazi descent and my immediate ancestors are from Eastern Europe gives me a greater chance of inheriting one of the three founder genes that increase my risk of Breast or Ovarian cancer. This is not to say those out there of similar lineage are at similar risk, after all, one needs to be tested and that is why I posted the link at the beginning of my blog. There are certain signs that if you have them in your family, should point you to visit with a Genetics Counselor and get started asking about genetic testing.

Statistics show that ethnic groups such as Ashkenazi Jews, French Canadians, African Americans, those of Norwegian descent have a higher risk of carrying either the BRCA 1 or 2 genetic mutation. My risk was one in 40 to be carrying the mutation. This is 10 times the chance of someone in the general public. Additionally, 40% of Jewish women with ovarian or fallopian tube cancer will carry one of the BRCA mutations and 20% of Jewish women with breast cancer the same.

Remember, that this is not related at all to the gene that determines your sex, so these genetic mutations can be passed on from either side of the family since you get one BRCA gene from each parent. My BRCA2 mutation that I carry came from my father's side, he had breast cancer as did his mother and grandmother. One 1st cousin also had ovarian cancer and that is what lead to our testing as a family. If this is the case or similar, please get to a genetic counselor. If you cannot locate one, the National Society of Genetics Counselors (www.nsgc.org) has a look-up tool to help locate one in your area. They are an integral part in helping you all through this journey. I have to say, I have spoken to 3 different counselors along the way from 3 different hospitals through FORCE events and my own experiences. Each had so much input and assistance to help me as well as my family. They explained genetic counseling, help understand the family history and how it relates to you and point you toward resources and tools.

One more aspect of Rosh Hashana is Change. As in the secular New Year, we make resolutions. My changes to make for the coming year are several fold. I want to earn more money so we are more self-reliant. I want to try and be healthier. I want to learn more to do at work and cross train. I want to volunteer more with FORCE and spread the word about hereditary cancer to save more lives.

I pray that I can accomplish these things and with God's help and my determination I will!

L'Shana Tovah Tikateiv Veteichateim, A Sweet New Year and May You be Inscribed in the Book of Life.

Love and hugs,
Beth

My Review of Roku HD Player

Originally submitted at Roku

The new HD, with built-in wireless, delivers top value in high-definition streaming.

Roku HD Player

I love my ROKU

By beth1225 from Willow Grove, PA on 9/12/2011

 

5out of 5

Pros: Great value, Reliability, Built in Wi-Fi, Easy to set up, Video selection, Compact, Easy to use, High quality picture

Best Uses: Kitchen, Bedroom

Describe Yourself: Netflix fan, Home entertainment enthusiast, Movie buff, Technophile, Early adopter

I am very please with my Roku HD. As a matter of fact, it is our second one we own, just got it today. I was able to cut back expenses on our Verizon FiOS account with being able to have the channels on Roku. Love it!

(legalese)

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

Biochemistry and Life-brca1.pptx - Microsoft PowerPoint Web App

Biochemistry and Life-brca1.pptx - Microsoft PowerPoint Web App:

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A friend and fellow BRCA Sister, Helen Smith, developed this Power Point presentation.

It is a very easy-to-understand format about genetic mutation and what carrying the BRCA mutation means to her and her journey.

We know that the two genetic mutations, BRCA 1 and 2, will increase risk of developing Breast and/or Ovarian cancers in their lifetime. There are many options available in current medicine beginning with increased surveillance to major surgeries.

With this presentation, perhaps more women and men will be able to make a better informed decision. As always. FORCE, Facing Our Risk of Cancer Empowered, is there as a font of information and support for those carrying the genetic mutation as well as those with a strong family history of these cancers. Go to www.facingourrisk.org for webinars, local outreach groups and much more!

Love and hugs,

Beth

National HBOC Week 9/25-10/2/2011

http://www.eventbrite.com/event/2108916827/?ref=enivtefor&utm_source=eb_email&utm_media=email&utm_compaign=invitefor&utm_term=readmore&invite=MTIxMTcwMy9iZXRobmxhcnJ5cGZlaWZmZXJzckBnbWFpbC5jb20vMA==

Click on the above link to learn more about what this event means!

In 2010, history was made with FORCE’s successful effort to pass a Congressional resolution declaring the first-ever National Hereditary Breast and Ovarian Cancer (HBOC) Week and National Previvor Day.

The goal of HBOC Week and Previvor Day is to raise awareness about hereditary cancer. HBOC Week marks the transition between National Ovarian Cancer Awareness Month and National Breast Cancer Awareness Month and recognizes anyone affected by hereditary breast or ovarian cancer, including women and men with BRCA mutations, people with a family history of cancer, breast and ovarian cancer survivors, and previvors, individuals who carry a strong predisposition to cancer but have not developed the disease.

An estimated three-quarters of a million Americans carry an inherited BRCA mutation but nearly 90% of these individuals don’t know about their risk. National HBOC Week and Previvor Day aim to help change that. And, it all starts with a celebration; please join us!

HUP Breast and Ovarian Cancer Awareness Conference

HUP Breast and Ovarian Cancer Awareness Conference

I am reaching out to a few friends and colleagues on a fundraising effort to help FORCE, a national nonprofit focused on hereditary breast and ovarian cancer (support, outreach, testing, research, legislation, etc.) that has become extremely important to my family. FORCE has over 70 outreach groups nationwide, including a very active organization here in Philadelphia. See www.facingourrisk.org/philadelphia for more info.

Most of you are involved with many charitable causes individually or as a company, but we wanted to inform you about FORCE’s mission to help reduce the risk of cancer and save lives. A woman who carries a BRCA mutation has up to an 87% risk of breast cancer and a 50% risk or ovarian cancer – versus 12% and 2% respectively for the general population without the mutation. For men, increased risk of melanoma, prostate and pancreatic cancer have also been associated with these mutations. I carry the BRCA2 gene mutation and FORCE was there for me with information and unconditional support.

FORCE is sponsoring 3 Breast and Ovarian Cancer conferences with Abramson’s Cancer Center (HUP) on Friday, October 28, 2011 to help bring awareness to our community. The attachment outlines the event and the benefits of the sponsorship. I am hoping you will consider sponsoring or providing a donation of any size to help. Through awareness and education, the people who carry the BRCA gene mutation can take steps to prevent cancer from continuing to impact future generations. Today, an estimated 90% of those people do not know they carry this gene mutation. We want families to pass down recipes, photos and memories to the next generation, not the risk of cancer. Please help FORCE and my family achieve this goal.

Thanks so much for your consideration.

Beth Cohen Pfeiffer, Social Media Coordinator

The following letters explain about sponsorship. If you cannot print them out from here, please send me an email and I will forward them to you!

Dear Prospective Donor,

Did you know that approximately one million Americans carry a cancer-causing gene mutation that puts them at high risk for hereditary breast and ovarian cancer (HBOC)

FORCE, Facing Our Risk of Cancer Empowered, is the only national nonprofit organization dedicated to fighting HBOC (Hereditary Breast and Ovarian Cancer) by providing lifesaving information, resources, and support through its programs.

To help raise awareness about HBOC, FORCE is planning a very special event during Abramson Cancer Center’s (Hospital of the University of PA) Breast, Ovarian & High Risk Cancer Conferences on October 28, 2011 at the Hilton Hotel on City Avenue in Philadelphia. A heart-felt Passing of the Torch ceremony will be held at the conclusion of these conferences with all attendees present where a flame will be passed from an ovarian cancer survivor to a breast cancer survivor. This marks the transition from Ovarian Cancer Awareness Month (September) to Breast Cancer Awareness Month (October). It also highlights the hereditary link between breast and ovarian cancer, honors cancer survivors and those at high-risk (previvors), remembers those whose lives have been lost to cancer, and recognizes families that have been affected by cancer. The conference includes topics related to Breast Cancer, Ovarian Cancer, and Women with High Risk.

How can YOU help? Become a SPONSOR for the event or simply make a donation!

Please select a sponsorship level on the enclosed sheet or make a donation in any amount and join us in our mission to raise awareness of HBOC. Together we can make a difference in the quality of life of many individuals and families during their HBOC journey.

If you have any questions or comments, please contact Kat Kline at 267-252-9949 or katk@facingourrisk.org. We would be very excited to have you as a partner in our mission.

Sincerely,

Amy Dysart, Mary Kraft, Diane Rose, Kat Kline, Annette Ramke, Stacey Jacobson,

Beth Cohen, Social Media Coordinator

Philadelphia Outreach Coordinators

Sponsorships are tax deductible as recognized by the 501(C)(3) IRS regulations. Checks should be made payable to: FORCE. Send checks to: FORCE c/o Kat Kline 201 Green Street, unit 4B, Philadelphia, PA 19123.

Sponsorships

There are several ways you or your sponsorship can help the HBOC cause and contribute to making the Passing of the Torch Ceremony a big success!

Sponsorship Levels:

$50.00

• Recognition of your company or individual name in the conference flyer handed out to all attendees.

$100.00

Recognition of your company and contact information or individual name in the conference flyer handed out to all attendees.

Recognition of company or individual name on FORCE’s local Facebook Page and in our monthly newsletter.

$500.00

Recognition of your company and contact information or individual name in the conference flyer handed out to all attendees.

Recognition of company or individual name on:

1. FORCE’s website through the end of the year.
2. FORCE Philadelphia’s Facebook page
3. Monthly newsletter
4. Will pass out business cards/flyers or brochures at our support meetings throughout the end of the year.

Donations of any amount would be greatly appreciated.

. Checks should be made payable to: FORCE. Send checks to: FORCE c/o Kat Kline 201 Green Street, unit 4B, Philadelphia, PA 19123.

Passing of the Torch

University of Pennsylvania

Sponsorship Contract

Please Print

Sponsor Name:______________________________________________________________

Contact Name:_______________________________________________________________

Title:________________________________________________________________________

Address:____________________________________________________________________

City, State, Zip_______________________________________________________________

Email address:_______________________________________________________________

Phone:_______________________________ FAX: ________________________________

Authorized Signature:_________________________________

Date:________________________

Sponsorship Amount: ___________________ Donation Amount: _______________

Sponsors needed by September 19, 2011

Brief description of company or services:

Questions and Comments

FORCE: Facing Our Risk of Cancer Empowered, is very excited to have you as a partner. Your sponsorship will help FORCE in its mission to fight hereditary breast and ovarian cancer. Sponsorships are tax deductible as recognized by the 501(C)(3) IRS regulations.

Checks should be made payable to: FORCE. Send checks to: FORCE c/o Kat Kline 201 Green Street, unit 4B, Philadelphia, PA 19123.

Spirit of Empowerment: A family gives back « Thoughts from FORCE

Spirit of Empowerment: A family gives back

Every Charity needs funds to run. Not every person who is affected by what the group supports can afford to give back monetarily. Some of these people take what they need and are never heard from again and that is fine. The main thrust of a charity is to help those in need. In order to help more people, more money is needed. It is a fiscal fact. Some, like me, give back by actions and deeds; I volunteer my time and energy whenever I can.

Then there are a wonderful family who has given back by establishing a Scholarship Fund and Project to aid those in need. The Brenda L. Caplan Memorial Fund was started by her daughter Dara Marius and husband, Myron Caplan. The Butterfly Project was created by Molly Marius with help from her mother Dara for Molly's Bat Mitzvah project in conjunction with the Scholarship to continue to add to it and extend its influence. Through these two funds, FORCE was able to bring 75 people to this year's Annual Joining FORCE's Conference. Below are excerpts from Dara's acceptance speech:

In accepting this award today, I would like to take a few moments to share with everyone here how FORCE has impacted our lives, and what this project has meant to our family.

Like so many in this room, our family’s lives have been irretrievably affected by hereditary cancer. I am BRCA 1 positive. My mother, Brenda, had both breast and ovarian cancer. Her half-sister died in her 30’s of breast cancer. My grandmother had bilateral breast cancer. Even my non-biological aunt, is BRCA 2 positive. In short, hereditary cancer– or the risk of it–is everywhere we look in our family.

The good news, however, is that with each generation the options become exponentially better. When my mother was diagnosed with breast cancer in 1992, no one suggested genetic testing to her despite her young age and strong family history. Had my mom been tested, and had her ovaries been removed, maybe her outcome could have been different.

But it is not just the prevalence of genetic testing that makes me optimistic. We now have treatments specifically tailored to the genetic make-up of a tumor. We have researchers who develop studies that seek to understand our unique population from both a treatment and prevention perspective.

Along with these important advances, in my mind, the broadest and most influential generational change for our community relates to the creation of FORCE and the passion of its members. Through FORCE, women and men affected by hereditary cancer find support, friendship, inspiration and most of all, knowledge. FORCE gives us unparalleled opportunities to acquire information and to find compassion and identity. FORCE is at the forefront of political leadership on issues and laws which affect the legal rights of our community.

Looking around this room, I know that we all have very individual and personal reasons for attending this conference. Some of us are previvors. We know or suspect we have a genetic mutation, and we come to this conference to understand our prevention and surveillance options. Others here are fighting hereditary cancer with bravery and dignity, and they seek knowledge of cutting edge treatment options available to eradicate their disease. Some are here professionally as doctors, researchers, geneticists, nutritionists, and counselors who help us treat, and prevent hereditary breast and ovarian cancer. And, finally, I can see the family members and friends—those who have the very difficult job of standing on the sidelines, watching and caring.

We all come together for different reasons. Yet, I believe we share one fundamental unifying belief. None of us here views ourselves as victims. Whether we have cancer, or a genetic predisposition, whether we care for or treat someone with hereditary cancer issues, we are all of us empowered. We cannot control our genes, but we can control how we respond to the hand life has dealt us. Instead of victims of chance genetic circumstance, we are people committed to helping each other and the generations yet to come.

For my family, this commitment and our desire to give back to the organization that personally helped me so much, led to the creation ofThe Butterfly Project. What started out as Molly’s idea to help people affected by hereditary cancer, rapidly grew into a namesake memorial fund for my mom and an ongoing scholarship program to provide monetary support to FORCE members who could not otherwise afford to attend this Conference.

Finally, for those of you who are somewhat new to FORCE, I’m going to let you in on a little secret. When you joined FORCE, you also took your place in a chain of people.

"For those of you who are somewhat new to FORCE, I'm going to let you in on a little secret."

Right now you may have one hand extended forward holding on to the hands of those who have walked this road before you. I am here to tell you that those people will hold your hand tight. They will keep you steady, and they will help you navigate the winding road over the mountains that seem so large. And, one day before you know it, you will cross those mountains and reach a beautiful valley. And when you arrive, your other arm will automatically reach back and grab on to those behind you, who you will now help. Because that is how it is done in FORCE. That is how we face our risk of cancer—we face it empowered as a community. On behalf of everyone who empowered the Butterfly Project, we thank you very much for this award and support!