Notes from the FORCE conference June 2011

6^th Annual Joining FORCES Against Hereditary Caner

Conference on Hereditary Breast & Ovarian Cancer 2011

Communicating with Family Members

• Family communication is important because it helps family members make informed choices for themselves; people are more apt to pursue testing
• 1. Start off w/objective information from doctors and genetic counselors, 2. find the right words 3. Figure out when and where to tell 4. Who to tell before and after testing
• Possible negative emotions as a reaction to risk information; avoid conflict by communicating directly, do not keep secrets and individuals should feel supported but not overwhelmed by loved ones and their involvement in what is going on

Hereditary Cancer Research Update

• MRI is far more superior than mammogram but bilateral prophylactic mastectomy (BPM) is the most superior of them all
• No further breast surveillance is needed after BPM, best reduction of breast cancer
• Age 35 to 40 for prophylactic salpingo oopherectomy (PSO) for the prevention of both breast and ovarian cancer; surgical menopause is more superior than natural menopause (30% of circulating estrogen w/natural menopause)
• HRT seems safe studies showed no significant increase in breast cancer
• Oral contraceptives prior to age 20 seems to increase risk of breast cancer but no data support if taken after 20
• Lumpectomy 10 year follow up no benefit w/mastectomy but after 10 years better survival rate with a single mastectomy and almost no cancer event after a BPM; apparent benefit of BPM after 10 years
• BRCA+ with early stage breast cancer for those node negative and less than 2 cm would benefit from chemo studies showing after 15 years higher survival rate

Ovarian Cancer Risk Management

• Prevention 1. Nutrition of Mediterranean and anti inflammatory diet 2. BMI higher than 29 causes extra circulating estrogen 3. Exercise lowers the circulating estrogen 4. Less stress because more stress lowers the immune system 5. Vitamin D increase 6. Oral contraceptives for 5 years can give 10 to lifetime worth of protection 7. Child birth and breast feeding
• HRT showed no risk of breast cancer but only improved quality of life; HRT should only be offered if there is no history of breast cancer
• After PSO no conclusive studies for surveillance besides CA 125/ US not needed
• No data to support removal of just the fallopian tubes because it can cause disruption of blood supplies that can cause cysts
• NCCN guidelines to consider transvaginal US and CA125 every 6 months starting at age 35 or 5-10 years before earliest age of 1^st dx of ovarian cancer in family though no evidence that ovarian screening for high risk women is effective
• Risk of Ovarian Cancer Algorithm preliminary data shows cut off for CA125 should be 50 rather than 30 for pre-menopausal women
• Single use of CA125 may not be helpful but use of it long term can be helpful to look for spikes
• CA125 the best tumor marker though there are ongoing test for HE4
• Surgical protocol should include 1. counseling, 2. consider consent for definitive staging surgery if cancer is found, 3. laparoscopy with examination of upper abdomen and pelvis, 4. biopsy of suspicious areas, 5. complete removal of both fallopian tubes and ovaries, 6. consider peritoneal cytology, 7. pathologic microsectioning (2-3mm) and 8.examination of entire ovaries and fallopian tubes
• Advantage of including hysterectomy is that it ensures removal of all the fallopian tubes, simplifies hormonal management (progesterone will not be needed,) decrease risk of endometrial cancer, use of Tamoxifen can increase risk of uterine cancer
• BRCA 1 surgery by 40 and BRCA2 by 45; oopherectomy after menopause is not associated w/decrease in breast cancer

Young Previvors: Medical and Emotional Issues

• Must give time to reflect, state the problem, be objective, find alternatives, figure out consequences and tradeoffs
• Must find support system while making decision
• Face dating, marriage and intimate relationships which can include fertility
• Fertility options: adoption, sperm sorting for male and preimplantation genetic diagnosis
• Relationships w/other relatives of guilt over a true positive or negative and previorship or survivorship
• More media on heredity cancer which can be either positive or negative

Internet

FORCE – www.facingourrisk.org
Among many other valuable resources and opportunities to form connections, FORCE has an online forum for young previvors. In addition, many local chapters have a young women’s group.

Bright Pink – www.brightpink.org
Bright Pink strives to enlighten and empower high-risk individuals to take control of their breast and ovarian health by providing education, support and a sense of community for a better, brighter future. Their PinkPal Program is a one-on-one supportive resource for young women at high-risk for breast and ovarian cancer.

Sharsheret – www.sharsheret.org
Sharsheret is an organization supporting young Jewish women and their families facing breast cancer by fostering culturally-relevant individualized connections with networks of peers, health professionals, and related resources. Their Link Program connects young women at high risk of developing breast cancer with volunteers who are similarly at risk and have offered to share their own experiences.

BRCA Umbrella - brcaumbrella.ning.com
BRCA Umbrella is an online support group community bringing together those at high risk for breast and ovarian cancer and providing a space to share information and personal stories.

Facebook: BRCA Sisterhood – www.facebook.com
This Facebook group of almost 1,000 members provides an opportunity to connect with other previvors and survivors, ask questions, read what others have posted, and find support.

Books and Media:

Blood Matters: From Inherited Illness to Designer Babies, How the World and I Found Ourselves in the Future of the Gene by Masha Gessen. Boston: Houghton Mifflin Harcourt, 2008

Eating Pomegranates: A Memoir of Mothers, Daughter, and the BRCA Gene by Sarah Gabriel. New York: Scribner, 2010.

In the Family. by Joanna Rudnick. Chicago: Kartemquin Films, 2008

Positive Results: Making the Best Decisions When You’re at High Risk for Breast or Ovarian Cancer by Joi L. Morris and Ora K. Gordon. New York: Prometheus Books, 2010.

Pretty is What Changes: Impossible Choices, The Breast Cancer Gene, and How I Defied My Destiny by Jessica Queller. New York: Spiegel & Grau, 2008.

Previvors: Facing the Breast Cancer Gene and Making Life-Changing Decisions by Dina Roth Port. London: Penguin Books Ltd, 2010.

What We Have: One Family’s Inspiring Story About Loss, Love, and Survival by Amy Boesky. New York: Gotham Books, 2010.

Resources:

MRI Financial Assistance Program for young women at risk of breast cancer through Right Action for Women which is a Christina Applegate Foundation. Women must be 45 or younger w/family history of breast cancer or tested positive for BRCA mutation. Any women meeting these criteria are qualified to apply, regardless of insurance status. Call Patient Services Inc at 1-800-366-7741 to get a program application. The amount of assistance granted is determined based on the financial need.

Other helpful links through Christina Applegate’s Foundation www.rightactionforwomen.org

Informed Medical Decisions will do genetic counseling over the phone. They will accept insurance but $375 w/o insurance.

CLRC is Cancer Legal Resource Center 866-THE-CLRC or www.cancerlegalresourcecenter.org

Negative BRCA Test www.negativebrcatest.com to learn more about a negative test result. $100 per hour though