Tested Positive for BRCA1 Mutation and Doctor Wants to Remove Ovaries and FT & UT/CX

I was recently diagnosed with BRCA1 mutation. My surgeon suggested that I have my ovaries and fallopian tubes removed in an effort to decrease my risk of developing cancer in them. He also suggested that I have my uterus and cervix removed at the same time so that I can use HRT. Without removal I would need to take progesterone or something along with the estrogen which would increase my risk of developing uterine cancer.

I cannot decide. He said that the choice is mine and if I don't have my uterus removed I will just jump into menopause and not have anything to help relieve the symptoms.

I really don't want to have my uterus and cervix removed if it is not necessary.

Any suggestions?

Hi brca1and48,

I'm sorry to hear you are BRCA1 positive. Did your surgeon recommend that you get tested? Is your surgeon a gynecological oncologist? Have you spoken to a genetic counselor? I apologize for hitting you with a bunch of questions right off the bat, but it can help others understand where you are in your process. Sometimes a lot depends on your family history and how your surgeon views your diagnosis. For instance, some oncologists and genetic counselors do not automatically recommend surgery, but instead recommend surveillance or chemoprevention. Some recommend preventative mastectomy as well as oophorectomy. Here is a short article that can help explain: Testing + for BRCA. Before making any decisions about surgery, you may do yourself a big favor by consulting a genetic counselor. They specialize in helping you to decide what your personal risks, including your age and lifestyle, are, as well as helping you talk to your family about risks.

If you decide to go ahead with the oophorectomy, whether or not to remove the uterus can be a difficult question. One thing to consider is whether your insurance will cover the cost of removing a healthy uterus. Also have you ever had an abnormal pap smear? That could indicate a risk for cervical cancer, but that can be complicated too - another reason to talk to a genetic counselor. As for HRT, if you choose to keep your uterus and cervix (actually the cervix is just the neck of the uterus, they are one organ), you can still do estrogen replacement, but you would also have to take some sort of progesterone to prevent build-up of endometrium, which could then increase your chances of cancer. Just as it does now, the progesterone would allow your uterus to shed the endometrium monthly.

Just to clarify, if you have both ovaries removed, you WILL be in surgical menopause, whether or not you do HRT. We do have members who have no ovaries but do have a uterus that do HRT, so it is not one or the other. HRT is just a bit more complicated when you leave the uterus behind, but it can be done. Unless there is more than your doctor has explained, it is not keep the uterus and have no HRT, or remove the uterus too and then you can have HRT. It's just that the HRT regimens would be different. Does that make sense?

Perhaps you misunderstood? If you keep your uterus, and do not take progesterone with estrogen, then you would be at a risk of developing cancer. If you do take progesterone with your estrogen, your cancer risk would be lessened.

Before you decide, you should definitely seek a second medical opinion, preferably from a gyn/onc in your case. We highly recommend that here on HysterSisters for all who are considering surgery. And as I mentioned, scheduling an appointment with a genetic counselor would be a great idea too.

We look forward to hearing from you again, and hopefully ladies who have retained their uterus will chime in with their experiences as well.