October 07, 2019
Our culture is trained to think of cancer patients in 3 stages: 1. newly diagnosed, 2. in treatment, and 3. survivors. But advances in genetic testing and proactive care have led to a 4th category perspective: cancer previvors.
A cancer previvor is a person who takes action to reduce or eliminate a genetic cancer before the cancer develops or is detected in his or her body. In other words, by being proactive, the patient can survive a genetic predisposition to cancer.
But can people really survive a disease they haven’t had? I say yes, and I’ll explain why. Let’s take a look at the physical and emotional costs women endure when they decide to become a previvor and how that’s weighed against the cancer they may be able to avoid — and survive — because of their choices.
The physical and emotional costs of becoming a previvor
A woman who receives genetic testing has much more to consider than her cancer risk alone. If we find a mutation or change in a gene that’s linked to an increased risk for gynecologic cancer, such as BRCA1 or BRCA2, she will face options that may change the layout of her life as she’s planned it, including her ability to have children and her physical appearance.
A famous example of a cancer previvor is actress Angelina Jolie. Through genetic testing, she discovered in 2013 that she was positive for a mutation in the BRCA1 gene, which increases the risk of breast and ovarian cancer in carriers and their children. Before cancer could develop, Jolie opted to undergo surgeries to have her breasts, ovaries and fallopian tubes removed.
When women consider proactive surgery, or prophylactic surgery, to avoid breast cancer or ovarian cancer, they must consider the decision from all angles. If their ovaries are removed, they’ll lose the ability to become pregnant without the use of in vitro fertilization or a surrogate. If their breasts are removed, they’ll have to think about whether they are comfortable having no breasts or consider their options for breast reconstruction or inserts.
Of course, this decision is yours. Your doctor should not demand that you choose surgery or push you into a decision with which you are uncomfortable. If your doctor does this, advocate for yourself and seek a second opinion.
Types of previvor strategies
Depending on your type of cancer, there are different ways to approach previvorship. Two of the most common strategies are prophylactic surgery and increased monitoring.
In this method, you will talk with your surgeon about having surgery to reduce your risk of developing cancer. Two of the most common prophylactic surgeries for women are oophorectomy (removal of the ovaries) and double mastectomy (removal of both breasts).
This method can be effective because certain cancer types are predisposed to develop in certain types of tissue, such as the ovaries or breasts. By removing this tissue, the homes for these cancer types are removed as well, and the cancer can’t grow there.
If a woman chooses to have her breasts removed, she will be unable to breastfeed if she becomes pregnant. She also may face self-image issues, changes in range of motion or fluid buildup in the arms and/or sexual side effects as she and her partner adjust to the physical changes.
If a woman opts to have her ovaries removed, she will go into menopause. She’ll stop having her periods and stop producing the same amounts of hormones a woman her age should produce, as well as experience menopause symptoms such as night sweats, hot flashes and vaginal dryness. As mentioned, this also will leave a woman unable to get pregnant, and she may experience a lower libido, or sex drive.
Some options to consider when thinking about having oophorectomy are egg freezing and hormone replacement therapy. Before the oophorectomy, we can harvest and freeze eggs from your ovaries to implant later if you choose to get pregnant, or they can be implanted in a surrogate. However, keep in mind that genetic mutations like BRCA genes are passed down through families, so future children also may be at risk.
After ovary removal, your doctor likely will recommend hormone replacement therapy to decrease menopause symptoms and regulate your hormones. While long-term hormone therapy can pose some health risks, your doctor will work closely with you to make sure the benefits of prophylactic surgery and subsequent therapies outweigh the risk of developing cancer.
This is the method I strongly recommend to women who are certain they don’t want to bear any more children and who want to worry less about developing cancer. However, if neither of these are true for you, you may want to instead consider a less permanent method — increased screening or monitoring.
Increased cancer screening
If you are predisposed to a certain type of cancer, but you decide you’d prefer to not have prophylactic surgery, another option is increased cancer screening.
For example, if you have a predisposition for breast cancer, your doctor may recommend that you begin screening mammography before the typically recommended age of 40. It's important to note that this method will not prevent the cancer from developing, but it can help us detect breast cancer at an earlier stage when it is easier to treat.
However, ovarian cancer currently has no reliable screening method. In fact, we often don’t discover it until it develops to a late stage when symptoms start to occur and the cancer becomes difficult to treat. Ovarian cancer, often referred to as the disease that whispers, is among the deadliest cancers for women for that reason, so talk with your doctor to be sure you both are comfortable with the decision if you choose not to have prophylactic surgery after completion of childbearing.
If we can identify early those women who are predisposed to ovarian and breast cancer, we can help them choose the most appropriate preventive method to turn them into cancer previvors. The most effective way we can do that today is to start with genetic testing.
Conversations about genetic testing and options for previvors can be difficult. While some women are incredibly leery about having their breasts or ovaries removed, some women are eager to do so to reduce their cancer risk. Neither option is wrong — talk to your doctor about the best option for your health and your goals.
Genetic testing and counseling
Genetic counselors at our nationally recognized cancer center identify and manage cancer risk through genetic testing and risk assessment.