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Tuesday, May 8, 2012
Thursday, April 19, 2012
Predicting response to chemotherapy
Predicting response to chemotherapy and likelihood of cancer recurrence is the name of the game these days. New tools are currently available for women diagnosed with breast cancer and include the OncotypeDX and Mammaprint tests. Both test help predict which early breast cancers are most likely to recur and can help guide treatment options. There are key differences between the tests so be sure to talk with your doctor about which test may be right for you.
But with ovarian cancer the story has long been different. As we noted in Positive Results, a BRCA mutation has been an indicator of improved response to chemotherapy and improved survival of ovarian cancer but little else has been on the horizon until now. A new study published this week in the Journal of the National Cancer Institute is narrowing in on a genomic analysis that may better predict ovarian cancer response to platinum-based chemotherapy. One note of caution, this is a very early study and any new clinically available test must await further clinical trials to determine if the test is indeed a good predictor of long-term survival of ovarian cancer and a potential guide for treatment. But we welcome any and all new research aimed at improving survival of ovarian cancer.
In the meantime, the United State Preventive Services Task Force (USPSTF) last week once again recommended against routine ovarian cancer screening for women at average risk for the disease reconfirming that such screening could do more harm that good. Please note, however, that this recommendation does not apply to high-risk women, including women with BRCA mutations. Required screenings for high-risk women are fully discussed in chapter 13 of Positive Results.
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.
But with ovarian cancer the story has long been different. As we noted in Positive Results, a BRCA mutation has been an indicator of improved response to chemotherapy and improved survival of ovarian cancer but little else has been on the horizon until now. A new study published this week in the Journal of the National Cancer Institute is narrowing in on a genomic analysis that may better predict ovarian cancer response to platinum-based chemotherapy. One note of caution, this is a very early study and any new clinically available test must await further clinical trials to determine if the test is indeed a good predictor of long-term survival of ovarian cancer and a potential guide for treatment. But we welcome any and all new research aimed at improving survival of ovarian cancer.
In the meantime, the United State Preventive Services Task Force (USPSTF) last week once again recommended against routine ovarian cancer screening for women at average risk for the disease reconfirming that such screening could do more harm that good. Please note, however, that this recommendation does not apply to high-risk women, including women with BRCA mutations. Required screenings for high-risk women are fully discussed in chapter 13 of Positive Results
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.
Monday, April 16, 2012
A fantastic new BRCA decision tool
Stanford University Medical School, specifically Dr. Allison W. Kurian and Dr. Sylvia K. Plevritis, have developed and published new online tool to help BRCA-positive women who have never been diagnosed with cancer make decisions about the impact of certain screening and surgical prevention options on the future risk of breast and ovarian cancer and of dying from these cancers. I didn't comment on this tool when it first came to my attention as I wanted to have the time to use the tool and see how it worked. I have now spent a substantial amount of time working with the tool and am very impressed. I truly wish this type of thing had been available when I was making my preventive surgery decisions!
In order to recreate what the tool would have done for me had it been available when I was making my decisions, I used my age at the time I learned about my BRCA2 mutation (42) and then plugged in all the options in the order I considered them: first I planned surveillance with mammography and MRI; next I considered prophylactic oophorectomy while keeping my breasts and continuing surveillance; after my first MRI had a finding that required biopsy and further investigation I switched gears for immediate mastectomies and oophorectomy sometime in the future, which I ultimately did when I was 46. This is how the decision tool worked for these choices:
The key part of this tool is that it provides visual feedback on the impact of specific interventions. The far left column is what would happen to the average BRCA2 carrier with no interventions (when you use the tool be sure to use the drop down box at the top to select your age and your mutation status i.e. BRCA1 vs. BRCA2). On the far right column for comparison is the average woman's risk absent a BRCA mutation. Obviously, the more "green" in any particular column the more likely you are to be alive at age 70 (the endpoint for this tool and the endpoint for many of the studies as we discuss in Chapter 5 of Positive Results). One thing that is clear to me is that as my understanding of my situation and my risk increased, the better my decisions became. My ultimate decision, which was mastectomies close to age 40 (42 actually) and oophorectomies close to age 45 (age 46) resulted in my risk profile (which is highlighted above) being as close to population risk ask I can get considering when I learned about my genetic status. The tool is not perfect, one can only select from five-year increments for age at certain interventions but in light of the fact that the studies at best use five-year increments for analysis it is certainly the best option available currently.
This tool is useful for BRCA-positive women of all ages who have not been diagnosed with cancer and who are contemplating preventive surgery. We have added it to our Resources page and I will be recommending it often. Many thanks to Stanford and to Drs. Kurian & Plevritis for this tool!
Joi
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.
In order to recreate what the tool would have done for me had it been available when I was making my decisions, I used my age at the time I learned about my BRCA2 mutation (42) and then plugged in all the options in the order I considered them: first I planned surveillance with mammography and MRI; next I considered prophylactic oophorectomy while keeping my breasts and continuing surveillance; after my first MRI had a finding that required biopsy and further investigation I switched gears for immediate mastectomies and oophorectomy sometime in the future, which I ultimately did when I was 46. This is how the decision tool worked for these choices:
The key part of this tool is that it provides visual feedback on the impact of specific interventions. The far left column is what would happen to the average BRCA2 carrier with no interventions (when you use the tool be sure to use the drop down box at the top to select your age and your mutation status i.e. BRCA1 vs. BRCA2). On the far right column for comparison is the average woman's risk absent a BRCA mutation. Obviously, the more "green" in any particular column the more likely you are to be alive at age 70 (the endpoint for this tool and the endpoint for many of the studies as we discuss in Chapter 5 of Positive Results). One thing that is clear to me is that as my understanding of my situation and my risk increased, the better my decisions became. My ultimate decision, which was mastectomies close to age 40 (42 actually) and oophorectomies close to age 45 (age 46) resulted in my risk profile (which is highlighted above) being as close to population risk ask I can get considering when I learned about my genetic status. The tool is not perfect, one can only select from five-year increments for age at certain interventions but in light of the fact that the studies at best use five-year increments for analysis it is certainly the best option available currently.
This tool is useful for BRCA-positive women of all ages who have not been diagnosed with cancer and who are contemplating preventive surgery. We have added it to our Resources page and I will be recommending it often. Many thanks to Stanford and to Drs. Kurian & Plevritis for this tool!
Find the BRCA Decision Tool here.
Joi
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.
Friday, April 13, 2012
An open letter response to a Cornell Sun blog post
This morning Google alerts picked up a blog post in the Cornell Sun that I felt I could not let pass without response. The student blogger was reporting on a class where testing for BRCA mutations and preventive surgery to avoid breast and ovarian cancer was much criticized by the lecturer. You can find the original blog post here.
I could not leave this without response so I sent the following email to the author:
Samantha,
Your blog hit my desk this morning having been picked up by Google alerts. While I am glad that your class is discussing the implications of genetics and the future of medicine I would like to add some real life perspective to the hypothetical presented in your class. I would also like to offer a correction. There are not multiple options for testing for the BRCA genes currently as Myriad Genetics holds patents that make it the exclusive source for BRCA testing in the United States. That may not continue to be true as those patents have been challenged in the courts and the United States Supreme Court issued a decision in another gene patent case last month that could result in all or some of the Myriad patents being invalidated. Another inaccuracy in the blog was that the a BRCA test does not show that you have breast or ovarian cancer. It just shows that you have a genetic predisposition that increases your likelihood of developing cancer in the future.
The issue that I have with the hypothetical presented to your class is that it is not very realistic. BRCA mutations result in earlier onset of breast and ovarian cancer very often striking women in their 30s and 40s who are raising children. Most of the 55-year-old women that I meet who have BRCA mutations have already battled breast or ovarian cancer, sometimes both. If a woman with a BRCA mutation reaches age 55 without a breast or ovarian cancer diagnosis she is truly lucky indeed. I am also dismayed that you portray a decision to have preventive surgery as simply "a chance to live longer" when we are all going to die of something someday any way. While that is true, those of us with BRCA mutations have all watched loved ones fight and often die from breast or ovarian cancer and we know that the battle is long, difficult and ugly. Allow me to give you a few more real life scenarios that are far more common than the one presented to you in class:
These are more realistic faces of BRCA carriers. Those of us with BRCA mutations who opt for preventive surgery to hopefully avoid the cancer that had taken many of our loved ones do so reluctantly. Do we do it to live longer? In one sense yes. But in truth, what we really want is a normal life span, not one that cuts our life short after multiple surgeries and multiple rounds of chemotherapy. Knowing that we have or do not have a family genetic mutation allows us an option that you take for granted, an option to live a normal life, see our kids grow up, play with grandkids and die having lived a full life. I will tell you that the women on my father's side of my family (the one without any BRCA mutation) all lived into their nineties while the women on my mother's side of the family died decades earlier. I inherited my mother's BRCA mutation but I have to tell you that I sincerely hope to live a life more like that of my paternal grandmother.
Regards,
Joi Morris
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.
I could not leave this without response so I sent the following email to the author:
Samantha,
Your blog hit my desk this morning having been picked up by Google alerts. While I am glad that your class is discussing the implications of genetics and the future of medicine I would like to add some real life perspective to the hypothetical presented in your class. I would also like to offer a correction. There are not multiple options for testing for the BRCA genes currently as Myriad Genetics holds patents that make it the exclusive source for BRCA testing in the United States. That may not continue to be true as those patents have been challenged in the courts and the United States Supreme Court issued a decision in another gene patent case last month that could result in all or some of the Myriad patents being invalidated. Another inaccuracy in the blog was that the a BRCA test does not show that you have breast or ovarian cancer. It just shows that you have a genetic predisposition that increases your likelihood of developing cancer in the future.
The issue that I have with the hypothetical presented to your class is that it is not very realistic. BRCA mutations result in earlier onset of breast and ovarian cancer very often striking women in their 30s and 40s who are raising children. Most of the 55-year-old women that I meet who have BRCA mutations have already battled breast or ovarian cancer, sometimes both. If a woman with a BRCA mutation reaches age 55 without a breast or ovarian cancer diagnosis she is truly lucky indeed. I am also dismayed that you portray a decision to have preventive surgery as simply "a chance to live longer" when we are all going to die of something someday any way. While that is true, those of us with BRCA mutations have all watched loved ones fight and often die from breast or ovarian cancer and we know that the battle is long, difficult and ugly. Allow me to give you a few more real life scenarios that are far more common than the one presented to you in class:
- 31-year-old BRCA-positive woman who grew up without a mother because her mom died of ovarian cancer when she was 6. How does she tell her fiancee that she wants to have preventive surgery as soon as she has kids so she does not leave them motherless?
- 38-year-old woman with less than 6 months to live because her "early" stage 0 breast cancer -- diagnosed when she was 33 -- has metastasized to her vital organs and her brain. She was diagnosed when her oldest child was 6 and her youngest was a toddler. Her daughter has never known a mother who was not "sick" and she will not see her daughter matriculate out of primary school much less see her children graduate from high school or dance at their weddings.
- A 50 something woman who has battled breast and ovarian cancer who is currently in hospice care and may not make it to summer because her recurrent ovarian cancer has invaded her intestines. Her beautiful 22-year-old daughter is her primary caretaker and will not only be dealing with the grief of losing her mother but also facing decisions about her own body parts because she inherited her mother's BRCA mutation.
These are more realistic faces of BRCA carriers. Those of us with BRCA mutations who opt for preventive surgery to hopefully avoid the cancer that had taken many of our loved ones do so reluctantly. Do we do it to live longer? In one sense yes. But in truth, what we really want is a normal life span, not one that cuts our life short after multiple surgeries and multiple rounds of chemotherapy. Knowing that we have or do not have a family genetic mutation allows us an option that you take for granted, an option to live a normal life, see our kids grow up, play with grandkids and die having lived a full life. I will tell you that the women on my father's side of my family (the one without any BRCA mutation) all lived into their nineties while the women on my mother's side of the family died decades earlier. I inherited my mother's BRCA mutation but I have to tell you that I sincerely hope to live a life more like that of my paternal grandmother.
Regards,
Joi Morris
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.
Thursday, February 23, 2012
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:
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.
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.
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.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.
National Study Chair, GOG-199 and GOG-8199
This work is licensed under a Creative Commons Attribution-NonCommercial 3.0 Unported License. Inquiries regarding rights should be directed to the authors.
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