What BRCA positive women need to know about removing their ovaries: As a board-certified Ob-Gyn, I know the ovary like the figurative back of my hand. Today represents a great opportunity for women (and men) to learn a lot more about preventing ovarian cancer, and Angelina Jolie’s article in the NYTimes starts that process. I encourage you to read it, but also to realize that there is much that the article does NOT explain, as it does not come from a medical perspective, but rather an individual/personal one. To begin, nearly every single Gynecologist with whom I discussed the news media coverage of the actress’s prophylactic mastectomy almost 2 years ago had the same reaction as I did: ‘what about her ovaries?” Today, we are exclaiming, ‘FINALLY!’ While we know that anything to do with the breast is certainly more sexy (and I mean that, unfortunately, very literally) than that dealing with the ovary, to be clear, ovarian cancer is the hidden killer for women with a BRCA mutation, not breast cancer. We can screen for breast cancer; we cannot screen for ovarian cancer. Breast cancer tends to be detected at early stages, ovarian cancer tends to be diagnosed in advanced stages.
The risk-reductive surgery to remove breasts is long, extensive, and requires extensive recovery. That to remove the fallopian tubes and ovaries is done laparoscopically, takes 15 minutes in the hands of experienced surgeons, and is done as an out-patient procedure (meaning the woman goes home usually the same day). Another thing that was missing in Jolie opEd piece is the frightening statistic that 5-10% of BRCA positive women are found to have an occult (or hidden) cancer in their ovaries or tubes at the time they undergo prophylactic surgery. This makes the prospect of randomly waiting until a given age (like 10 years earlier than a woman’s relative was diagnosed with ovarian cancer) literally akin to a game of Russian roulette. We don’t know what the right age is for a woman to remove her ovaries and tubes when she carries a BRCA mutation. The age of 35 has been mentioned in the Gyn literature, some say 40 years old is the right age, as has the general ‘when she is finished with child-bearing’ age parameter. The bottom line is that this is an individual and personal decision that will differ for each woman.
Jolie speaks a lot about ‘balancing hormones’ and ‘combining advice from Western and Eastern physicians’ which I think is perfectly fine however, I think it’s important to keep our eyes on the prize here: survival! It’s hard to balance hormones when you are dead from ovarian cancer, so while treating and addressing menopausal issues is most definitely key for quality of life and is a must for discussion with a woman’s gynecologist, the priority here is preventing death from ovarian cancer. Nevertheless, concern about immediate menopause, and protection of skeletal health is important and is an appropriate part of this entire process. There are hormonal and non-hormonal options for women today. I personally recommend bioidentical transdermal patches like Climara Pro and the non-hormonal, pharmaceutical grade bee pollen extract, Relizen for the relief of menopausal symptoms.
Reducing the risk faced by women who carry the BRCA mutation has been conclusively proven via surgical removal of the ovaries but also the fallopian tubes. This is largely omitted from the article and it is literally life-saving information that every woman needs to know. It is now believed that the majority of ovarian cancer actually originates in the fallopian tubes. This is significant because when a woman who is BRCA positive considers her therapy options, removal of the tubes is key, and some women may choose to do that before she even removes her ovaries (though this is a new approach and is controversial). Also, the surgeon performing the operation needs to be current on the fact that the entire fallopian tube must be resected (removed) to truly lower the risk of cancer. To talk about ovarian cancer today and not mention the fallopian tubes is like talking about smart phones and omitting the iphone. Lastly, only the ovarian tumor marker, Ca-125 was discussed in the Jolie article. In fact, there are SIX ovarian tumor markers (inhibin, LDH, AFP, hcG, and he-4) that can be checked in women at high risk of ovarian cancer. These are all non-specific to ovarian cancer, and because one is elevated does not mean there is ovarian cancer present. Ca-125 is by far the most common marker, and whether or not to check the other 5 markers is up to the discretion of the surgeon. Many of these markers are used to follow progression of disease, not to screen or diagnose a new case of cancer. If normal, it is not a guarantee that there is not a microscopic area of cancer cells present, and if abnormal, it doesn’t mean a woman has ovarian cancer. But they can provide useful information in certain cases, and when interpreted by a Gynecologic Oncologist.
I am so glad that one of the world’s most famous actresses shared her experience about the steps she took to reduce her risk (and quite likely save her own life) by having prophylactic surgery. This is an option that women need to know about. The data is clear that it is saves lives in women with a BRCA mutation. (also remember that taking birth-control pills also reduces the risk of ovarian cancer.) And the fact is that the BRCA mutation can be passed to boys/men also, so I hope that the next piece Angelina Jolie writes addresses how she will address the 50% possibility that her biological children carry this mutation. She has a massive opportunity to educate many people about this cancer risk, and in doing so, hopefully save many lives. We must also be very mindful of the fact that many, everyday, non-famous women have already taken this step, gone through this process and received no front-page news attention or accolades. For those women, and their families, please know that I applaud your strength and courage, and also support the thoughtful decisions of the 30% of women who choose NOT to have surgery. I don’t agree with that approach, but I support patient’s autonomy regardless. There are options, and women should know about ALL of them.
For more information, I refer you to SGO, ASCO, ACOG, and American Cancer Society. And I appreciate the expert insights from my colleague, Gyn Oncologist, Dr. Kenneth Kim, from University of North Carolina. Here is a good general primer on ovarian cancer to get you started, from ACS:
Most women have one or more risk factors for ovarian cancer. But most of the common factors only slightly increase your risk, so they only partly explain the frequency of the disease. So far, what is known about risk factors has not translated into practical ways to prevent most cases of ovarian cancer. There are several ways you can reduce your risk of developing epithelial ovarian cancer. Much less is known about ways to lower the risk of developing germ cell and stromal tumors of the ovaries. The remainder of this section refers to epithelial ovarian cancer only. It is important to realize that some of these strategies reduce the risk only slightly, while others decrease it much more. Some strategies are easily followed, and others require surgery. If you are concerned about your risk of ovarian cancer, you may want to discuss this information with your health care professionals. They can help you consider these ideas as they apply to your own situation. Oral contraceptives Using oral contraceptives (birth control pills) decreases the risk of developing ovarian cancer, especially among women who use them for several years. Women who used oral contraceptives for 5 or more years have about a 50% lower risk of developing ovarian cancer compared with women who never used oral contraceptives. Still, birth control pills do have some serious risks and side effects. Women considering taking these drugs for any reason should first discuss the possible risks and benefits with their doctor. Gynecologic surgery Both tubal ligation and hysterectomy may reduce the chance of developing ovarian cancer, but experts agree that these operations should only be done for valid medical reasons — not for their effect on ovarian cancer risk. If you are going to have a hysterectomy for a valid medical reason and you have a strong family history of ovarian or breast cancer, you may want to consider having both ovaries and fallopian tubes removed (called a bilateral salpingo-oophorectomy) as part of that procedure. Even if you don’t have an increased risk of ovarian cancer, some doctors recommend that the ovaries be removed with the uterus if a woman has already gone through menopause or is close to menopause. If you are older than 40 and you are going to have a hysterectomy, you should discuss the potential risks and benefits of having your ovaries removed with your doctor. Prevention strategies for women with a family history of ovarian cancer or BRCA mutation If your family history suggests that you (or a close relative) might have a syndrome linked with a high risk of ovarian cancer, you might want to consider genetic counseling and testing. During genetic counseling (by a genetic counselor or other health care professional with training in genetic risk evaluation), your personal medical and family history is reviewed. This can help predict whether you are likely to have one of the gene mutations associated with an increased ovarian cancer risk. The counselor will also discuss the benefits and potential drawbacks of genetic testing with you. Genetic testing can help determine if you or members of your family carry certain gene mutations that cause a high risk of ovarian cancer. Still, the results are not always clear cut, and a genetic counselor can help you sort out what the results mean to you. For some women with a strong family history of ovarian cancer, knowing they do not have a mutation that increases their ovarian cancer risk can be a great relief for them and their children. Knowing that you do have such a mutation can be stressful, but many women find this information very helpful in making important decisions about certain prevention strategies for them and their children. More information about genetic testing can be found in our document Genetic Testing: What You Need to Know. Using oral contraceptives is one way that many women can reduce their risk of developing ovarian cancer. Oral contraceptives also seem to reduce this risk for women with BRCA1 and BRCA2 mutations. But birth control pills can increase breast cancer risk in women without these mutations. This increased risk continues for some time after these pills are stopped. Studies that have looked at this issue in women with BRCA mutations haven’t agreed about what effect birth control pills have on breast cancer risk. Some studies have shown an increased risk of breast cancer, while some have not. Research is continuing to find out more about the risks and benefits of oral contraceptives for women at high ovarian and breast cancer risk. It isn’t clear if tubal ligation effectively reduces the risk of ovarian cancer in women who have BRCA1 or BRCA2 mutations. Studies that have looked at this issue haven’t agreed about this. Researchers do agree that removing both ovaries and fallopian tubes (salpingo-oophorectomy) helps protect women with BRCA1 or BRCA2 mutations against ovarian (and fallopian tube) cancer. Sometimes a woman has this surgery to reduce her risk of ovarian cancer before cancer is even suspected. If the ovaries are removed to prevent ovarian cancer, the surgery is called risk-reducing or prophylactic. Generally, salpingo-oophorectomy is recommended only for very high-risk women after they have finished having children. This operation lowers ovarian cancer risk a great deal but does not entirely eliminate it. That’s because some women who have a high risk of ovarian cancer already have a cancer at the time of surgery. These cancers can be so small that they are only found when the ovaries and fallopian tubes are looked at under the microscope (after they are removed). Also, women with BRCA1 or BRCA2 gene mutations have an increased risk of primary peritoneal carcinoma. Although the risk is low, this cancer can still develop after the ovaries and fallopian tubes are removed. The risk of fallopian tube cancer is also increased in women with mutations in BRCA1 or BRCA2. Sometimes early fallopian tube cancers are found unexpectedly when the fallopian tubes are removed as a part of a risk-reducing surgery. In fact, some cancers that were thought to be ovarian or primary peritoneal cancers may have actually started in the fallopian tubes. That is why experts recommend that women at high risk of ovarian cancer who are having their ovaries removed should have their fallopian tubes completely removed as well (salpingo-oophorectomy). Research has shown that premenopausal women who have BRCA gene mutations and have had their ovaries removed reduce their risk of breast cancer as well as their risk of ovarian cancer. The risk of ovarian cancer is reduced by 85% to 95%, and the risk of breast cancer cut by 50% or more. Another option for women who do not wish to have their ovaries removed because they don’t want to lose ovarian function (and go through menopause early) is to have just the fallopian tubes removed (a salpingectomy). They may choose to have their ovaries removed later. This has not been studied as well as removing both the ovaries and fallopian tubes at the same time, so it isn’t clear how much this affects the risk of cancer. It is clear that to have the greatest effect on breast cancer risk, the ovaries need to be removed by the time the woman is 35. Some women who have a high risk of ovarian cancer due to BRCA gene mutations feel that having their ovaries and fallopian tubes removed is not right for them. Often doctors recommend that those women have screening tests to try to find ovarian cancer early..this can involve serial pelvic sonograms and testing the blood for Ca-125.