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I recently went through the Colorectal Cancer Risk Assessment Clinic in 2008 at Hopkins and my BRCA2 gene was revealed as UNCERTAIN. Now, they are telling me to treat it as POSITIVE. I am 48 and a 10 year survivor of OVCA and have two daughters, 21 and 19. Has anyone out there been diagnosed with this and can you give me any suggestions or hope!!??? THANK YOU!
Cancer Surgery Hysterectomy Colorectal cancer Counseling Endometrial cancer Breast cancer Ovarian cancer
Janice, well besides our names in common (although my real name is Jan) we also have this genetic mutation in common. I too am BRCA 2 positive. Unlike you I have not been as lucky to remain in remission from OVCA for 10 years. From what I have heard relative to the BRCA gene if you are able to stay in remission the first time for at least a year your chances grow exponentially of this disease not having a quick reoccurance. I was diagnosed with Stage IIID Primary Peritoneal and Ovarian Cancer 4 years ago. I have been in remission 3 times but never longer than 9 months. Prior to that I had breast cancer (DCIS) but if cancer can be good it was considered the best form of breast cancer I could have. It was ductal. However, the Drs. believe that the breast cancer and now ovarian are all related to the BRCA gene. Often people who are BRCA positive have a prophylactic hysterectomy and if they have had breast cancer they sometimes do a prophylactic mastectomy. These are questions you should ask your oncologist or seek genetic counseling. If you are BRCA positve your siblings should be checked and most definitely your daughters. My sons even need to be checked as there is a risk for men as well to get breast cancer. I do not mean to scare you with any of this. I now understand that knowledge is power and can be life altering. I hope you remain in good health and that your loved ones are not carriers of this disease. I honestly believe it is why I have had such a difficult time in getting healthy. They are doing studies on BRCA mutataions and researching ways to repair the gene to enable us to fight cancer in ways that people without the mutated gene are able to. I hope they discover that one day. WIshing you happy and healthy days.
Jan
If you were at a Colorectal Cancer Risk Assessment Clinic, while they are testing for the BRCA 1 and BRCA 2 gene, did they also test for Lynch Syndrome, also known as Hereditary NonPolyposis Colorectal Cancer (HNPCC)? Women with hereditary colon cancer condition are also at risk for ovarian cancer.
Women diagnosed with Lynch syndrome, a condition often associated with colon cancer, also are at high risk for endometrial and ovarian cancers - both of which can be eliminated by having a prophylactic hysterectomy and oophorectomy (removal of the ovaries), according to a study published by researchers from The University of Texas M. D. Anderson Cancer Center in the Jan. 19 New England Journal of Medicine.
Lynch syndrome is an inherited disorder in which affected individuals have a much higher-than-normal chance of developing colon cancer and/or certain other types of cancer, usually before the age of 60. About one in 1,000 individuals carry the gene mutation that causes Lynch syndrome, which accounts for approximately five percent of all colon (in men and women) and endometrial cancers, and two percent of all ovarian cancers, according to Karen Lu, M.D., associate professor in M. D. Anderson's Department of Gynecologic Oncology.
The key reason they embarked on this study was that women with Lynch syndrome have an equal risk of developing endometrial and colon cancers, and often develop additional cancers. However, for the last 20 years, the majority of the Lynch syndrome research has been focused on colon cancer risk. Often, women who have this condition don't even realize that they also are at risk for two gynecological cancers, and their risk is extremely high.
Women with the condition have a 40 percent to 60 percent lifetime risk of developing endometrial cancer, and a 10 percent to 12 percent lifetime risk of ovarian cancer. By comparison, in the general population, a woman's risk of developing endometrial cancer is about three percent, and a woman's risk of developing ovarian cancer is one percent to two percent.
To determine that the preventative surgeries reduced the risk for endometrial and ovarian cancers the researchers retrospectively evaluated 315 women with Lynch syndrome. For preventative reasons or to treat benign conditions, 61 of these women had undergone a prophylactic hysterectomy; 47 also had their ovaries removed. All of the other 254 women, the control group, had not undergone any prophylactic surgeries.
No endometrial and/or ovarian cancers were diagnosed in the women who had undergone the prophylactic surgeries. However, 69 women (33 percent) in the control group were diagnosed with endometrial cancer; 12 women (5 percent) in the control group were diagnosed with ovarian cancer.
For women who have this condition and are at an extremely high risk for two gynecological cancers, this study provides a positive finding. There is definitive evidence for doing something proactively that will prevent women with Lynch syndrome from ever getting either endometrial, or ovarian cancers, or even both.
This study is a very important reminder to physicians to pay particular attention to a woman's family history of colon, endometrial and ovarian cancers, with genetic counseling becoming of utmost importance. If women with Lynch syndrome are identified, there needs to be coordinated care between the gastrointestinal and obstetrics and gynecologic medical disciplines.
Thank you. I will notify Hopkins tomorrow and ask them about the Lynch Syndrome. It's so nice to know you can get help from other OVCA survivors.
Another Jan...
I tested positive for BRCA2 two years after my diagnosis of Stage IIIC ova. Now I'm more than 2 1/2 years from diagnosis, and still in remission. I'm trying to decide whether to have a prophylactic mastectomy since the chances of breast cancer are high. I go to a breast cancer specialist 2x a year for tests but so far am not ready to make that jump.
You might want to connect with FORCE which is a networking group for women who tested positive for BRCA 1 or 2. I've gone to one local meeting but haven't been active. But there's lots of info which may be helpful to you!
Good luck!
Jan,
My wife Missy is BRCA positive as well. Both her mother and grandmother passed away from ovarian cancer. During her mother's fight with cancer, they learned of genetic testing. Missy has had a prophylactic double mastectomy and breast reconstruction. Then at age 30 (after having two children) she decided to complete the prevention recommendations with a prophylactic hysterectomy. The pathology of that surgery diagnosed her with Stage 1 ovarian cancer. Although she is facing some issues now, the genetic testing and process saved her life. She founded a non-profit to pay for testing and you can read more about her story at www.ngtf.org. I hope this helps with your daughters!
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