Oophorectomy and Hysterectomy
Prophylactic surgery is done to lower the risk of a future cancer (in other words, taking away a body part before it develops cancer). We talk about surgery to take off one or both breasts in our summary on Lumpectomy and Mastectomy. In this part of the website, we talk about the experiences people we interviewed had with surgery on other parts of their bodies following a breast cancer diagnosis.
Dr. Amye Tevaarwerk, University of Wisconsin – Madison, describes surgeries that reduce risks of other cancers related to some breast cancers.
Dr. Amye Tevaarwerk, University of Wisconsin – Madison, describes surgeries that reduce risks of other cancers related to some breast cancers.
So because the genetic mutations that most commonly drive an increased risk for future breast cancer, something like BRCA1 or BRCA2 mutations are also associated with ovarian cancers. Sometimes, you will see us taking the ovaries as well to prevent, ovarian cancer in the future... The tricky thing can be that there's other reasons, to take the ovaries we sometimes have women who are pre-menopausal at the time have a hormone receptor positive estrogen receptor positive breast cancer, we sometimes have them get their ovaries removed to help lower sort of total estrogen levels as part of the treatment for breast cancer. So, it can get a little tricky to figure out what's happening and why.
From a medical standpoint, you can do a hysterectomy where you remove the uterus or the womb, which is the part of the – a woman's body, where the uterine lining builds up and then sheds and that's a period or where babies live. And you can -- or you can remove the ovaries and the tubes that connect eggs coming from the ovaries to the uterus. So, you can remove just the—the ---the ovaries and the tubes that's called a bilateral salpingectomy, oophorectomy if you take both of them out the over -- oophorectomy is the ovaries part. Salpingectomy is the part where you remove the tubes. That is a surgery that is typically done to reduce the risk of ovarian cancer or to make someone thoroughly postmenopausal. If they were premenopausal at their breast cancer diagnosis. The removal of the uterus can happen for other reasons. So women who have heavy bleeding from thyroids or who have a prolapsing uterus might have it removed for completely non cancer reasons. From a cancer standpoint for a BRCA 1 or 2 mutation the uterus doesn't necessarily have to come out. There’s other mutations that might play someone at risk for uterine cancer. Sometimes it comes out because we are also using drugs like tamoxifen then increase the risk for uterine cancer. So what happens to the uterus can turn into a very complicated discussion between a patient, a medical oncologist, and gynecologic surgeons, who are sometimes also gynecologic cancer surgeons like gynecologic oncology surgeons, about what needs to happen for the uterus. It is not a simple topic.
Prophylactic surgery would be where we remove a tissue or an organ that has not yet been impacted by cancer, in the hope that there will not be a chance for cancer, to develop and grow in that area…
The most likely place for a left breast cancer, to come back is probably in that left lumpectomy bed area. But removing the right breast for someone who has a left cancer is a prophylactic surgery. It's being done, hopefully, to reduce the risk of cancer on the right side but cancer on the right side would be a new breast cancer. We do it -- sometimes after some, some good discussion hopefully for patients who have a very strong family history they're developing a cancer pretty early on, there is a feeling that they have a genetic mutation that places that remaining breast tissue at pretty high risk. Sometimes, though there is other factors that drive that prophylactic surgery like I am going to have to have a left mastectomy I don't want reconstruction and I am going to feel very asymmetric afterwards. Right so that lack of symmetry may drive it, patient preferences about how they get screened after a cancer diagnosis if someone's going to need mammograms and they've already you know, sort of had struggles with multiple repeated mammograms and the need for lots of biopsy, someone might say, I want to get off what we call the screening merry go round. Right, where you're just like screening - biopsy – screening - biopsy - screening – biopsy. So, feelings about getting off away from screening can affect that but a prophylactic surgery is not about controlling cancer it's about controlling future risk for cancer. Potentially.
I think patient preference and perception of whether or not they want it, plays a large role… From a medical standpoint, I think it becomes something that often, is discussed at length with patients by surgeons and maybe even medical oncologist when there's a known genetic mutation or when perhaps there's a very strong family history of cancer quite early on. Even if maybe we can't find the genetic mutation and we start to have discussions about --- we're a little bit worried that you are at risk, a pretty high risk for a second breast cancer, maybe it would be reasonable to take both breasts off to reduce that chance as close as we can to zero--- and where that line is probably depends a little bit on the individual surgeon or medical oncologist and patient. I think most of the time sort of as it starts to get up over 25%, or so it starts to come up for clinician. Whether that's enough for patients depends on the patient.
So a decision about prophylactic surgery is often a little bit -- a little bit more flexible from a time standpoint right it doesn't have to happen, right now, the way a cancer surgery might have to. Although sometimes there is a desire to combine it with the cancer surgeries to reduce the number of times someone goes to the OR.
Some of the women we interviewed had tested positive for genetic mutations (such as BRCA1 or BRCA2) that really increase their risk for both breast cancer and ovarian cancer. For people with genetic mutations, doctors may suggest extra screening or removing some body parts (such as ovaries or the fallopian tubes) in order to reduce future cancer risk. Doctors may also offer patients the option of prophylactic surgery instead of preventive medication as a way of lowering the risk of breast cancer reoccurring.
Our module on Cancer Risk that Runs in Families has more information about genetic cancer syndromes, including people’s experiences with prophylactic surgery and their increased risk for other cancers.
Making Decisions about Prophylactic Surgery
The people we interviewed considered various things when deciding whether to have prophylactic surgery: their age and stage of life, other medical conditions, their perception of risk for future cancer, and the impact they thought the surgery would have on their lives. Lisa S. said it was easy for her to decide to have a bilateral oophorectomy: “I was 51…past menopause. So, when they told me that the ovaries had to come out because of the BRCA. I was like, ‘well, I don't really need them anymore.’” Michelle was “tired of needles,” noting she had been “a pincushion off and on for five years now.” So, when her oncologist suggested an oophorectomy, her response was “no, please take everything—so ovaries, uterus, fallopian tube, cervix—all in one, one fell swoop.”
Lisa S. decided to have an oophorectomy because of both her age and her worry about the possibility of ovarian cancer.
Lisa S. decided to have an oophorectomy because of both her age and her worry about the possibility of ovarian cancer.
I think because when I had the ovary surgery, I was 53. I was already past menopause. I found out when I was--oh, 53, 51, doesn't matter. I was, past menopause. When they told me that the ovaries had to come out because of the BRCA. I was like, well, I don't really need them anymore.
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Like I said, like I was 53, so take the ovaries, right? They're like an appendix. Whoost, I don't need them. I didn't really even think about what women have to go through that are younger, right? And that have to make that choice because it'll—you can get ovarian cancer. I don't mean quickly. Or what--the ovaries are like, the way I like to describe it, they're like meatballs, right? With the spaghetti sauce and spaghetti. We don't have, in this day and age, a very good test for ovarian cancer. You cannot see it. You can do a CT scan, and you still can't see very well. And so the reason why we remove the ovaries is because there isn't a good test. And when they do have good test, it's already too far gone. Once they can see it, it's too far gone.
When it came to making decisions about prophylactic surgery, some of the people we interviewed felt their choices were easy to make because of the stage of life they were in. Janet S. experienced a handful of side effects following her surgery but deciding to have her ovaries removed “didn’t bother” her because she “wasn’t planning on having other children.” Becky had previously gone through IVF and knew her chances of having another baby “were pretty much null” so she decided to have both her ovaries and tubes removed at the same time as her mastectomy. However, others had a harder time weighing the trade-off. Asante had a hysterectomy despite wanting “to have another baby so badly;” her increased risk of ovarian cancer made her realize “there is more life to live.”
Ronnie wants to wait and do a full hysterectomy when she is a little older.
Ronnie wants to wait and do a full hysterectomy when she is a little older.
And then I had to meet with my OBGYN. And he was suggesting since I’m 40 to take every, you know, to take out the ovaries, take out the fallopian tube. He wanted me to do a full hysterectomy and, so, yeah. The last few months, even though I was perfectly healthy, I’ve been in all these conversations about trying not to die and yeah. It’s just been a lot.
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The conversations, I think, have mostly stopped. I think at 44 or 45 they’re recommending that I take everything out. Just to because people with BRCA2, like for BRCA1, if you have that, they recommend taking everything out by 40 at the latest. Like, 35 or like 40 at the latest, or younger. But for BRCA2 they find those who develop ovarian cancer happens later. And so, you can wait a little bit later.
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But then there's also like, you know, I mean, I'm single. I don't have children. There was and then the all this stuff about ovarian risks. Then there was a whole other, like what if no man wants to be with me? You know, there's all that risk about will I ever get married and will I ever I was already in my 30’s getting a lot of pressure from my mom to, you know, find a husband and start a family.
Going through Prophylactic Surgery
Women’s experiences with prophylactic surgeries can be different based on whether they were able to combine them with other surgeries or they had them (or wanted them [to]) take place separately. In general, the more kinds of surgeries the people we spoke with had at same time, the longer the surgery and the harder the recovery. However, some people said it was more important to have fewer surgeries, if it was a safe option. Becky, for example, was able to have an eight and a half hour surgery including prophylactic surgery on her ovaries, a breast cancer surgery and part of her breast reconstruction. As she put it, “I just wanted them to get it all over with.”
Asante's surgery lasted 13 hours and included both a complete mastectomy and hysterectomy.
Asante's surgery lasted 13 hours and included both a complete mastectomy and hysterectomy.
I talked to him and he said, "Asante, you know, the worst thing that I would want to happen is that you go through this breast cancer thing, and you come back in a year, and you have ovarian cancer." It's like, “I don't want that for you.” And it's funny because we planned this whole surgery with robotics and all this thing. It was a real high-tech surgery that he did. When I got to the room to actually get it, I did not want to do it. I was terrified. I was terrified of a 13-hour surgery where you were taking all my lady parts; my breasts, my ovaries, everything. And that's when he sat me down. He held my hand. He said, "I'm gonna give you some tough love right now, and I don't want you to come back in a year with ovarian cancer." He said, "I've seen it time and time again."
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The surgery was 13 hours. They did it both at the same time. The recovery was harder, I felt, than chemotherapy was.
Lisa S. described an “easy” recovery from her prophylactic bilateral oophorectomy.
Lisa S. described an “easy” recovery from her prophylactic bilateral oophorectomy.
Oh, you know, that wasn't bad. I had a month off from work. I probably could have used only two weeks. I had a month off. It was, I took August off. What great time! It was great. I wasn't living here. I was living. I call it summer camp. I was in between because I had just gotten the no cause eviction like we all did in the building I was in. And in a day, I found a great place in this fabulous house that we all had dinner together, and we had cocktails together. It was great. Everybody was about my age. It was like having a party every night. I recuperated there. I'd sit in the back yard. I'd read books. You know and then we'd all have dinner. So, the recovery was easy. I talk about the social stuff. But the recovery was very easy. It wasn't a problem.
For more about coming to terms with not having more children, see our summary on Cancer and Knowing Yourself. For more about experiencing menopause as a consequences of breast cancer treatment, see our summary on Sex and Sexuality.