Ovarian Cancer Research Needs You!

A guest post from FORCE founder Sue Friedman about an important research need:

If you were one of the high-risk women who participated in the large GOG-199 research study, thank you for helping advance critical research that will lead to better health outcomes for our community. Your continued participation in a related study, which is easy and involves only a simple annual questionnaire, will help researchers continue this important work.

Studies specifically for high-risk women are rare and necessary to address the serious issues we face. This uniquely focused research depends on our participation, which also shows researchers and funding agencies that our community is important and supports continued research. If we are to discover better methods of detection, prevention, and effective treatments, we must do our part by participating in these studies.

This is why I am so distressed to learn that funding for an important research program for women at high genetic risk of ovarian cancer is threatened, not because the funding isn’t available, but due to lack of subject participation. GOG-8199 is a continuation of GOG-199, and is only open to women who enrolled in the original GOG-199 study. GOG-199 is advancing what we know about hereditary ovarian cancer. The study:

• enrolled 2600 high-risk women;
• collected valuable DNA, sequential serum and plasma samples, and samples of normal and cancerous tissue obtained during risk-reducing salpingo-oophorectomy;
• could yield clues that will help us :
• understand the causes and development of ovarian cancer;
• improve early detection and prevention options;
• develop better ways to pinpoint and personalize ovarian cancer risk estimates;
• understand how non-BRCA genes influence ovarian cancer risk in mutation carriers and other high-risk women;
• address quality-of-life issues for those undergoing surgery or surveillance; and
• test a method of using individual CA-125 trends to detect early-stage ovarian cancer.

Please read the following important message from Dr. Mark H. Greene of the National Cancer Institute and Study Chair of GOG-199 and GOG-8199.

Attention All Participants in GOG-199, the National Ovarian Cancer Prevention and Early Detection Study for Women at Increased Genetic Risk of Ovarian Cancer
GOG and the National Cancer Institute have launched a new but closely-related follow-up study for which only women who participated in GOG-199 are eligible. It extends the follow-up of GOG-199 participants for an additional 5 years, in an effort to improve the precision of cancer risk estimates and increase the usefulness of GOG-199-related biospecimens. The new study—designated GOG-8199—requires only the signing of a new consent form for the additional follow-up, and completion of a brief annual follow-up questionnaire by snail-mail, telephone or email. In-person visits to GOG study centers are NOT required. The new study does not include additional biospecimen collection, additional screening tests or the potential for surgery. It simply collects information on how participants are doing, and whether they have developed new cancers or undergone additional risk-reducing surgical procedures. This new information will be linked to the data that each GOG-199 participant has already contributed, substantially increasing the overall value and usefulness of the GOG-199 data base. 

Unfortunately, accrual to GOG-8199 has been distressingly slow, and GOG is at risk of losing its funding for this study if a substantial number of additional participants are not recruited by May 2012. We are asking GOG-199 study participants who might now be willing to consider joining this extension (GOG-8199) to contact the GOG site at which you were originally enrolled and discuss joining 8199 with your GOG research nurse. Please act at your earliest possible convenience, if we are to avoid the closure of this important addition to GOG-199. We offer a special shout-out to those of you who have already enrolled in GOG-8199. You are already in the system and do not need to respond to this request. Many thanks! 

Thank you all for having made GOG-199 such a success. Analyses of the major study end-points are now underway, and it is anticipated that important new findings will be published during the coming year. 

Mark H. Greene, M.D.
National Study Chair, GOG-199 and GOG-8199

For more information about GOG-8199 and to learn how to enroll (open only to those who were in GOG 199) please visit the study website.



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JAMA publishes new study on BRCA mutations and improved ovarian cancer survival

Today's issue of the Journal of the American Medical Association includes an important new article on improved ovarian cancer survival for BRCA mutation carriers co-authored by Dr. Ora Gordon, co-author of Positive Results. A link to the JAMA article can be found here.

A summary of the study's conclusion is that for patient's diagnosed with epithelial ovarian cancer, both BRCA1 mutations and BRCA2 mutations confer improved 5-year survival, independent of cancer stage at diagnosis.  Confirming the conclusion of prior studies, the new analysis found that BRCA2 carriers have the best disease prognosis.


 
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Mastectomies: The five year update

Five years ago today my husband drove me home from the hospital after my prophylactic mastectomies.  I was nauseous in the car but anxious to be home in my own bed.  My youngest son, who was eight at the time, was finding it difficult to sleep without me home.  Once I was home, all was right in his world, regardless of the fact that I could do virtually noting for him. For the next week, after my husband washed my hair in the sink, my sons would perform the role of hair stylist and blow dry my hair.  Fortunately for me I have naturally straight hair that looks pretty much the same regardless of the abuse to which it is treated.

Fast forward five years:  My youngest son is 13 and now in the firm grip of early puberty with its hormonal surges, early growth of facial hair, rapid increase in stature, moodiness and total rejection of mom.  These days he only takes the iPod headphones out of his ears long enough to demand that I do something for him.  Of course I am now firmly in the throws of surgical menopause from my prophylactic removal of my ovaries so let's just say menopause and puberty don't mix so well and leave it at that.

Prior to my mastectomies, one of my worries was how I would feel about my reconstructed breasts over time.  This week, on the five year anniversary of my mastectomies, I have mostly been too busy with the rest of my life to even ponder this question.  Life goes on.  Except in the small circle of women friends who are also BRCA-positive, my surgeries and my post-surgical feelings about my breasts are never discussed.  My experience with my surgeries, while life changing, do not continue to define my life.

For a period of more than three years BRCA did consume my life.  I had to face the cancer risk imparted on me by genetics and have the guts to do what my intellect told me was right but my emotions told me was crazy.  Then I made the equally irrational decision to write a book to help others, which I could not have done without the help and support of one of the most brilliant and dedicated doctors around -- Dr. Ora Gordon.  Once the book was published I continued to be immersed in this world through my volunteer work with FORCE, Susan G. Komen for the Cure and this blog.  Those of you who regularly follow this blog have no doubt noticed that the frequency of my posts have diminished.  The reality of the situation is that writing good blog posts takes time and right now the priorities in my life are such that the extra time for blogging is in short supply.    My time now is primarily consumed by my family.  I have two teenagers, both of whom are very bright and talented and one of whom is nearing the age of applying to colleges, which is now a full time job for the entire family, and I have older family members who need help dealing with the diseases of aging.

The reality of my current life stage is that I don't have time to dwell on how I feel about my reconstructed breasts, but this week I have allowed myself a few moments to reflect on this topic.  For the most part I don't think about my breasts, they have become part of who I am and the fact that they are different from the ones nature gave me is irrelevant.  At other times I catch a glimpse of myself in the mirror and what I see is not what I expect.  My reconstructed breasts, although very well done, are not the same; not in size, not in shape and not in location on my chest.  But what matters most is that these new breasts have given me the ability to return the focus of my life to what it should be, my friends and family, without constant fear of cancer.  This, I realize now, is a luxury that I once again take for granted.

I will continue to update this blog from time to time, although perhaps not frequently.  We do however update the Positive Results Facebook page with new studies, research, and other relevant links more frequently so if you have not yet become a fan of our Facebook page please do so here or through the link at the right.

Wishing you all a happy and healthy 2012,
Joi


 
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Dr. Ora Gordon discusses preventing breast cancer on CBS

A new report released this week concludes that there are lifestyle changes women can take to reduce breast cancer risk.  As readers of Positive Results know, we devoted an entire chapter to this important topic and we welcome further research in this area, which is as of yet far from clear.

Here is a short summary of the conclusions reached in the Institute of Medicine Report released this week:

"—Yes: Hormone therapy combining estrogen and progestin, excess weight after menopause, alcohol consumption and radiation from too many medical tests, especially during childhood. The panel doesn't say how much radiation is too much, but says two or three abdominal CT scans give as much as atomic bomb survivors received. Mammograms use minuscule amounts and should not be avoided. Oral contraceptives slightly raise breast cancer risk while taken, although cancer rates are very low in the age groups that use them.

—No: Hair dyes and the kind of radiation from cellphones, microwaves and electronic gadgets. 

—Probable: Smoking.

 —Possible: Secondhand smoke, nighttime shift work and exposure to benzene and a couple other chemicals through jobs or from breathing car fumes or pumping gas. It is "biologically plausible" that BPA and certain other plastics ingredients might affect estrogen, which fuels most breast cancers, but evidence is mostly in animals and lab tests — not enough to judge whether they harm people, the panel concluded."

Dr. Ora Gordon commented on the study in a CBS interview this week: Studies Show Women Can Control Many Breast Cancer Risk Factors « CBS Philly.



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Dr. Ora Gordon on CNN with Dr. Drew

Here is the link to Dr. Gordon's CNN interview on Dr. Drew, which aired yesterday: http://www.cnn.com/video/#/video/bestoftv/2011/12/06/exp-drew-breast-cancerr-hln.cnn


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