How Women With BRCA Gene Mutations Decide To Remove Ovaries and Tubes

Living with a genetic mutation that increases your risk of cancer is a heavy burden.

For women carrying the BRCA gene, part of the burden stems from an increased risk of getting cancer, and part stems from a really big decision – whether or not to remove the ovaries and fallopian tubes before menopause to lower the risk of breast and ovarian cancer. I know first hand because I’ve been asked to discuss this crisis with many women over the years, including my wife who went into early menopause because she had her ovaries and tubes removed to lower her risk of ovarian cancer because most of the women in her family died before age 50 due to that disease.

It’s very emotional and there are a lot of facts you need to know. Women often don’t get the emotional support they need to accompany such a major decision. And sometimes it’s hard just to find out what all your options are.

You know you have a strong family history of breast or ovarian cancer, which puts you at an increased risk for ovarian and breast cancer. You get genetic testing and now you know you have the BRCA1 or BRCA2 gene mutation.

You discover that cancer of the ovaries and fallopian tubes (most ovarian cancer actually begins in the wide end or fimbriated end of the fallopian tubes) is the third most common gynecologic cancer, but it is the #1 cause of death, usually because it is found so late. Breast cancer is also increased in women with the BRCA gene mutation from the 13 percent most women face of having breast cancer by age 70 to a 45 to 70 percent risk depending on whether you are BRCA1 or 2. That’s pretty scary.

Your HCP has told you the risk of ovarian cancer with BRCA1 is 44 percent and with BRCA2 it’s 17 percent instead of 1.4 percent as it is in the general population. That doesn’t include the increased risk of breast cancer. Your HCP has also told you that removing your tubes and ovaries will lower your risk of ovarian cancer by 90 percent and will lower your risk of breast cancer by approximately 50 percent.

But as soon as you take out your tubes, you can’t get pregnant without in-vitro fertilization (IVF); and as soon as your ovaries are removed you are in menopause. Particularly for younger women, the world suddenly gets turned upside down.

Why? Because the recommendations are for women with the BRCA1 gene mutation to have the surgery to remove their tubes and ovaries (called risk-reducing salpingo-oophorectomy) between ages 35-40 years, and for women with the BRCA2 mutation, between ages 40-45 years. Removing the uterus (hysterectomy) doesn’t lower a woman’s risk of ovarian cancer so she doesn’t have to do that unless she is also having a separate problem with her uterus.

So what do you do, when do you do it, and how do you decide?

That’s what a new study in the journal Menopause tried to understand from the woman’s perspective.

Here’s what the study found

One hundred ninety-one women with either BRCA1/2 were in the study. Fifty-one women either declined or put off any surgery. The most common reason was to be able to have children. Seventeen of the 51 women who declined surgery just didn’t want to have the surgery or felt they would take their chances with getting cancer. Another seventeen women had only their fallopian tubes removed because it would lower their risk of ovarian cancer but would still allow them to get pregnant with IVF, and it would not throw them into menopause. Those women planned to come back at a later age to have their ovaries removed.

Two of the women who had their ovaries removed to prevent or lower their risk of ovarian cancer were found to already have an early stage ovarian cancer. They were ages 55 and 60 years and not the younger age ranges. Two more women already had early stage cancer of their fallopian tubes. But all four of these women were already in menopause at the time of their surgery. Having the surgery likely saved their lives.

As you can see, living with the BRCA gene mutation is a real challenge for women, particularly young women who haven’t completed having children. The women in this study made a range of decisions based on their personal beliefs, child-bearing status and how frightened they were of getting cancer. There is no one size fits all.

So what should women do?

That, of course, depends on the individual woman and ongoing discussions with her HCP.

Here are some things to consider:

1. If you have a family history of breast or ovarian cancer, get genetic counseling and discuss getting genetic testing. Today it’s easy to get tested.
2. Get regular screening of your breasts and ovaries for early detection. The earlier it is found, the higher the cure rate.
3. If you’ve completed your child bearing, discuss when to consider having your tubes and ovaries removed. If you won’t consider that, discuss with your HCP about what type of regular screening is best for you and do it regularly. New types of testing are coming out including a blood test (a so-called “liquid biopsy”)
4. If you haven’t had children or think you want more and have a partner, have them as soon as you are able that makes sense for you.
5. If you haven’t had children or think you want more and have a partner, consider doing IVF and freezing the embryos for a transfer back some time in the future
6. If you haven’t had children or think you want more and don’t have a partner, consider doing IVF and freezing your eggs. The younger the age , the greater the chances for success
7. If you are reluctant to have your ovaries removed before menopause or at an earlier age, discuss with your HCP having only your tubes removed so you can somewhat lower your risk of ovarian cancer
8. Discuss with your HCP whether chemoprevention is a good choice for you. That involves taking a form of chemotherapy before you have cancer to lower the risk of later getting it.
9. If you do have your tubes and ovaries removed, talk with your HCP about going on hormone therapy (HT). HT does not increase the risk of breast or ovarian cancer in BRCA patients above their existing increased risk because of having the BRCA gene mutation.

Having a genetic mutation like the BRCA is definitely a challenge. But finding out if you do have it empowers you to make choices that gives you the most options. The above study shows how many ways different women react to their diagnosis. It’s definitely not easy. But the more you know and the earlier you know it, the more control you can take over the future.