Considering Surgery to Reduce Risk
People with an inherited or genetic risk of cancer may be offered what doctors call prophylactic, preventive, or risk-reducing procedures. This summary focuses on risk-reducing surgeries; other medical treatments designed to further reduce the risk of cancer reoccurrence are explored elsewhere. Surgical prevention involves, as Irina says, “eliminat[ing] organs that can potentially have cancer in them.”
For the genetic syndromes described on this website, prophylactic surgeries most commonly involve mastectomy (removal of one or both breasts), hysterectomy (removal of the uterus), salipingo- oophorectomy (removal of the fallopian tubes and ovaries), colectomy (removal of the entire or part of the colon), or gastrectomy (removal of the stomach). Choices to pursue, delay or avoid these procedures are common for people with many different hereditary cancer mutations.
Timing of Prophylactic Surgery
Surgical removal of various organs (e.g., breast, fallopian tubes and ovaries, colon, etc.) is sometimes recommended for people who have not been diagnosed with cancer but have a genetic mutation or a strong family history of those cancers. This is known as prophylactic surgery. Individuals discussed how they decided when to have these surgeries.
After testing positive for a BRCA mutation, Briana waited until she was in a “really good situation” before having a prophylactic mastectomy (removal of breasts).
After testing positive for a BRCA mutation, Briana waited until she was in a “really good situation” before having a prophylactic mastectomy (removal of breasts).
And so I finished up my undergrad, and then went and traveled, and then went into the Peace Corps. And just tried to meet, I guess, all of my goals and all of my dreams, which I'm still doing. It wasn't like having a BRCA1 mutation and having to go through a prophylactic mastectomy was the end of everything, but there were definitely things that I wanted to do before focusing on that. So when I came back from the Peace Corps in [location], I got a job with a company. It was a very pragmatic decision to get a job with them and go somewhere that I knew was a private company that had good health insurance, that they already knew me, because I'd worked with them before. So it was all in all a really good situation. And I was able to get the surgery done. And then while I was actually-- while I was recovering from surgery, and beforehand, I was applying to grad school, and found out probably a week after my second surgery following the prophylactic mastectomy that I got into grad school. So yeah, that's, I guess, what led up to, you know, most recently-- six months ago-- the prophylactic mastectomy.
Prophylactic surgery may also be performed after a cancer diagnosis, to prevent a second, new cancer either in the same or a different organ.
Victoria found it difficult to decide whether to have surgery before or after chemotherapy.
Victoria found it difficult to decide whether to have surgery before or after chemotherapy.
And well, yes the genetic test came out positive. So, I think that from there came more of the worry because, well one also worries because I have sisters. But also the worry for me was that they had to remove both breasts.--So, I think that it was also very difficult because they were going to do a total mastectomy. So, well one is not prepared to receive those results.--I know that it was very difficult to decide whether to start with surgery or chemotherapy. It was very difficult for me to make a decision. But the doctors always, always supported me with everything. They gave me psychologists, people who talked with me so I could make a decision, that is what I should do. But at the moment where –I remember that I even had the date for chemotherapy and I cancelled it because I was indecisive. I was still indecisive. What to do first, surgery or chemotherapy? I remember that I did cancel it. I couldn’t start the chemotherapy. But I wanted the surgery first and chemotherapy after.Y pues, sí, en la prueba genética salió positiva. Entonces yo creo que de ahí vino más la preocupación porque, pues,[eh]uno también se preocupa porque tengo hermanas. Pero Commented [NJ4]: Spanish Clip Text
también la preocupación para mí fue deque me tenían que quitar los dos senospara no correr el riesgo de que pasara de un seno al otro seno.--Entonces yo pienso que también fue muy difícil porque iban a hacer—este--una mastectomía completa. Entonces, pues una no está preparada para recibir esos resultados.--Fue muy difícil para mí tomar una decisión.Pero los doctoressiempre,siempreme apoyaron en todo. Me pusieron psicólogos, personas que hablaron conmigo para que yo pudiera tomar una decisión, qué es lo que debo de hacer.Pero en el momento en que--yo me acuerdo que ya hasta tenía la fecha para las quimioterapias y que lo cancelé porque estaba indecisa. Yo todavía estaba indecisa. ¿Qué hacer primero? Si la cirugía, las quimioterapias. Yo recuerdo que sí lo cancelé. No pude empezar las quimioterapias. Pero yo quise primero la cirugía y después las quimioterapias.
PSM describes having a complete hysterectomy (removal of uterus, fallopian tubes and ovaries) after being diagnosed with endometrial cancer.
PSM describes having a complete hysterectomy (removal of uterus, fallopian tubes and ovaries) after being diagnosed with endometrial cancer.
I had-- it was endometrial cancer. It had not gone outside of the endometrium. So it was inside too. But I had-- but I said to the gynecologist then, “take everything out,” because knowing about the—the female insides, everything is so interconnected. And this is such an unpredictable disease, I did not want to leave my ovaries, you know, anything. So he kept asking me, “are you sure,” you know, “you want to do this?” And I said, “yes, I'm sure.” I was 42 at the time. And so I went in and I had a total hysterectomy. at age 40-something.
Prophylactic surgery can be a one-time event. However, for people with increased risk for cancer in multiple parts of the body, as is true for many we interviewed, a series of surgeries focused on different parts of the body may occur. Paul, for example, had first his colon, and then his stomach, removed. Clinicians working with people who have breast cancer may also recommend delaying removal of a breast in which there is no cancer until after the affected breast is removed, especially if they are also recommending radiation after mastectomy for cancer.
Joan had surgeries three years in a row, two of them preventive.
Joan had surgeries three years in a row, two of them preventive.
Was that at the same time when you had the breast cancer?
No, I wish I had made that decision. I had a mastectomy. The next year, prophylactically, I had a hysterectomy. And then the next year I had a mastectomy.
Wow. So you had three years in a row, three surgeries.
Yeah, and I should have just done the two breasts at the same time, but you don't-- you're not necessarily thinking that at the time.
Yeah, was it that you weren't thinking it? Or was it that you learned more later?
Yeah, I think it was that I learned more later. I was just, and plus, I was just focused on let's deal with what we're dealing with.
Deciding to Have Prophylactic Surgery
Decisions about whether and when to undergo prophylactic surgery are highly individual. People we interviewed talked about considering both medical and personal factors.
Peggy based her choice on her doctors’ advice, her family experiences, and her own priorities.
Peggy based her choice on her doctors’ advice, her family experiences, and her own priorities.
The doctors meet and they tell me what their game plan is. And I'm probably going to go with
their advice, because I don't know a lot with medicine, and I'll do whatever I have
to do to survive. And I'll do so I don’t-- so I can live life more.
---
So I'm going to do the right mastectomy, and I've already had my ovaries and tubes removed,
because of the ovarian cancer risk. And then my grandma has ovarian cancer, so I wanted to be
proactive and try to limit myself, so I don't get another bout of cancer later on in life, which I feel
like I might because I'm young and I've already had it once, and I'm probably more susceptible to
get another form, later in life.
For some people, the choice is very clear. Cynthia called her oophorectomy (removal of ovaries and fallopian tubes) “a given,” based on the discovery of her BRCA genetic mutation and the fact that her mother had ovarian cancer. Victoria took her family history, her genetic risk, and her trust in her doctors into account when she decided to follow the doctors’ recommendation to have her ovaries removed. After having been diagnosed with breast cancer twice in the past, Desiree welcomed the option to have a prophylactic mastectomy, noting “I’m trying to reduce the risk of hearing for a third time ‘You have breast cancer.’ So I’m going to take this bold step.”
Paul carefully considers the possible adverse effects of having surgeries to remove parts of his digestive tract, but decides he values staying alive above all else.
Paul carefully considers the possible adverse effects of having surgeries to remove parts of his digestive tract, but decides he values staying alive above all else.
One of the things that my first surgeon said that struck me, he went through all the—this from the colectomy—he went through all of the potential issues that could come up from the surgery, from the surgery itself, and any side effects, and issues that might crop up. And, you know, some of them were regular stuff. You might get an infection during the surgery, you might need blood, whatever. One of them was where he was operating there was a possibility of becoming impotent. Which struck me as, wow, that's a pretty significant side effect. So I said, “OK, what would be the consequences? Now, I know the consequences of having surgery, what would be the consequences of not having the surgery?” And he said, “oh, that's easy, you'll get cancer and die.” So, wow! OK. So let's—let’s go ahead and do it then, because I don't like that.
Right. Yeah.
And then, when they first started talking about gastrectomy, many years ago before they decided the polyps in my stomach were benign, my thought was “I'll just let it kill me. I'm not having another surgery.” And then when they said, “well, I think you're you might have to have your stomach out,” I was like, “OK, cool. Let's do it.” Because you can be cavalier about it, but I have decided, also, having survived the first couple of surgeries, and I’ve decided that I would pretty much just like to live forever. So I was like, “OK, cool. Sign me up. Let's have the surgery. Let's do what we need to do.”
For other people, however, the choices were more difficult. Women faced with decisions about removing their breasts, ovaries, and uteruses must weigh medical risk against a complicated set of considerations related to age, fertility, menopause, sexuality, and feelings about femininity. Younger women who have not yet had children, or are not yet finished breastfeeding, may opt to delay surgeries or sequence them so as to preserve organs related to having and nursing children as long as possible. Older women may make the opposite choice. Many women told us that their doctors are sensitive to these considerations and discuss preventive options in the context of life stage.
For Lisa S., the decision to keep her breasts but have her fallopian tubes and ovaries removed was based largely on her perception of how effective different types of screening are.
For Lisa S., the decision to keep her breasts but have her fallopian tubes and ovaries removed was based largely on her perception of how effective different types of screening are.
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. So at this day and age, the young girls have to remove it. Why? Because we don't have a good enough test. That's the reason why they have to do it. That's the only reason. They don't have a good enough test. That's crazy. Isn't that crazy? That's just crazy. And the reason why I kept my breasts originally, first of all, I didn't really understand enough that keeping them could have made me get invasive cancer. Well, it could have been that way. But I just thought, “Oh, we have good tests,” and we do. We have mammograms, and we have MRIs. So you're getting tested every six months, and they're looking at the breasts. And so they can see changes in six months’ time. Within six months’ time, nothing should change that much, right? Not always the case, in fact, it's not the case. But there's a test at least. There's, there’s measures, but not for the ovaries. And so I think, the BRCA, the community of people made me realize, again, that I was lucky and that there is a world of people that have to make a big, big, big decisions.
Is It Prophylaxis or Is It Something Else?
Sometimes the line between prophylactic surgery and curative surgery can be blurry. Men and women with conditions like a polyposis syndrome and Lynch syndrome usually have multiple procedures to remove polyps, which a pathology report may or may not later reveal to be cancerous. In other situations, people may have important reasons to opt for a surgery that is preventive. For example, individuals with cancer in one breast sometimes want to remove both breasts for reasons of cosmetics or comfort. Lainey described having only one breast as “more disturbing…than having none” and joked “hey, they were going down to my knees anyway.” When individuals decide to have surgery as a strategy for lowering their future risk for cancer, rather than to directly address identified cancer, they are considered to be prophylactic.
Physical Complications and Complex Emotions
Prophylactic surgeries, like all surgery, can be difficult - either physically, emotionally or both. Individuals who we interviewed noted that medical complications, both minor and serious, are also possible.
After Jack had a portion of his colon removed, he experienced complications.
After Jack had a portion of his colon removed, he experienced complications.
And then in October, I don't feel like eating today for Sunday dinner. We always have a Sunday dinner with everybody. I didn't feel like eating anything. Get up in the morning and I feel ill. And so going to the emergency room. And I'm looking up on the web all these things you can also-- you can have all these things that you're wrong about. And actually, self-diagnosis generally is not very accurate. And so I went in. And again, excellent medical care. Went in to [CLINIC], which is very good. And I'm feeling nauseous and all kinds of things. I think he's an NP, too. I don't know. These men and women know as much as the doctors do for the most part. And he looks at it and says, “no. I think we're going to send you right into the hospital.” And diagnosed, he thought it was twisted bowel. Which after having messed around in there, it can twist up again. That can be very dangerous because it shuts off and then it can go bad and it can die and all that kind of thing. So then I go into the emergency and then got in for twisted bowel. And there they put that, man I've got to drink all that stuff, only it's not going anywhere. And put the nasogastric tube down, which is not a lot of fun. And then go through all the operation. Get up the next day. And a nasty recovery for that, too. They had taken the tube out. They had to put the tube back in again. And they put it in, oh, and it felt better. And the nurse looks up and she says, “oh my god”. And it pumped out all this black stuff. So you don't need to hear all this. But this all has to do with, it's all related to the Lynch syndrome. You can end up in the hospital multiple times-- and probably this is something people don't want to hear but it's possible-- because they couldn't get the polyp out from the colonoscopy. And that all is actually Lynch syndrome stuff.
For others, even when operations go well and there are no surgical complications, individuals who opt for prophylactic treatment note that there are often physical changes with which they must cope. Mea had a longer-than-normal recovery and needed to spend three weeks in the hospital after her colectomy. When she returned home, she said, “I was really small, weak, you know, and it took a while for me to get back to my old self again.” A number of younger women we interviewed described experiencing sudden menopause after having their ovaries removed.
Irina talks about her sudden menopause.
Irina talks about her sudden menopause.
You talked about delaying of, or pushing back forced menopause. So now that you've had it, has that been an issue for you?
Well, yes and no. It's been much better than I thought it would be, because I almost don't have any of the symptoms that people usually complain about like hot flashes, that kind of stuff. But my bones already show the, well, it's not osteoporosis yet, but it's pre-osteoporosis stage whatever.
Osteopenia?
Yes, exactly, that's what it is. And which, actually, ironically, I had to fight for too, for the scan, for the bone density scan. Which I did not think it would be an issue, because I wanted to have it right away so we know where I am. And so I just had it, a year and a half after surgery. So I only can assume that I didn't have it before, because I really shouldn't have. But you know, it's probably going to get worse. If, I mean I'm trying my best to like exercise and eat, and all that stuff. But yeah, mostly it’s been OK.
People who undergo prophylactic procedures may experience a wide range of emotions. Many are reassured. Despite her early menopause and the physical issues that have followed, Irina says “I don’t regret doing it. I…feel better knowing that it’s not, like my risk of having that kind of cancer is pretty low now.” Sue, who had a hysterectomy and oophorectomy when she was in her fifties and done having children, finds “at least as far as surgeries go,” hers “was a breeze.”
Asante experiences her decision to have a mastectomy as empowering.
Asante experiences her decision to have a mastectomy as empowering.
And then with the surgery, I was so tired of lumpectomy after lumpectomy. I just was like, three is enough. You know, and checking, and this, and I just didn't want that. And, you know, breast cancer can come back somewhere else. I'm rebuking it. It's not going to come back to me. But I just wanted to have, I wanted to take control. I didn't want them to control me. I had very fibrocystic breasts. They were big, they were heavy.
Others, however, continue to grapple emotionally with their decisions.
Cynthia says she mourns her breasts and had conflicted feelings about her decision to have both removed.
Cynthia says she mourns her breasts and had conflicted feelings about her decision to have both removed.
I think that one of the things that I have a hard time with it all is, because I chose to do it as a preventative measure, I struggle a little bit with, do I have a right to feel this way, knowing I did it intentionally? Versus, I had cancer and I had no choice. I had to do it. So I struggle with the justification of when I'm feeling that way, when I'm feeling that struggle, when I'm feeling unhappy with the fact that I had to change my appearance.
---
I struggle with it still pretty often. You know, when I look in the mirror or when I'm getting dressed for the day, I was a much larger-breasted woman, and now I'm very small in comparison, even though they put the largest implant that there is inside of me because of my, you know, framework. It's relatively small in comparison. And so I'm looking at that on a regular basis and slowly getting comfortable with it, but it hasn't happened overnight. And there's still days when I look at in closet and there's this shirt that I used to wear and that I like and I can't, because it doesn't look right on me. I struggle with that. Sorry.
It's a loss.
It is.
It's a mourning.
It is a loss.
Grappling with the Dilemmas of Prophylaxis
Jack, Irina, Cynthia and many others we interviewed described the dilemma of prophylaxis. By opting to take action to reduce a risk that may or may not materialize in the future, individuals who are feeling well may be subjecting themselves to physical adverse effects and emotional difficulties. Those we interviewed pointed out that there is no state of perfect certainty when confronting inherited cancer risk. Opting for prophylactic surgery, which Irina laughingly calls “go[ing] through surgery for nothing,” can therefore feel like a gamble.
For some of the people we interviewed, conflicted feelings were much relieved when a previously undetected cancer or pre-cancer was discovered in the tissue removed. Joan, who has Lynch syndrome and has already experienced breast, colon, and bladder cancer, had her thyroid removed prophylactically even though there have not, to date, been studies linking Lynch to thyroid cancer. She said “thank heavens I did, because they found something that was precancer, so that would be, that would have been another one to add to my list.” Cynthia, the woman who struggled because she had opted to remove what she thought were healthy breasts, also later learned that the tissue showed a small malignancy that had not yet been detected.
Kerry says she had to make a conscious decision to accept her own choices.
Kerry says she had to make a conscious decision to accept her own choices.
For some reason, before I even found out I had cancer, I mean, I obviously knew people that had gotten cancer, and I said, that I just made that up in my brain that I was like, up in my mind, that I will get both of them removed. I mean, that was just-- but then when they told me I had a choice, then it was like, I wanted to do the right thing. And they did tell me that the chances of it coming back into your left breast, if you leave it, if we're constantly checking you, it’s pretty small. You know? But I still, I think I wanted symmetry, and I wanted to feel beautiful. And I knew that they do less scans on me if they just remove them both. And so that was another thing. You know, the idea that-- and then with the implants, you think about, are they going to still be able to see stuff with the implants in there? You know, that was a question that I had. There's so many things that you don't know, and you, you just have so many questions. But so I think there wasn't anything medically that said, you know, for sure you need to do this. So it just really came down to my personal feelings on it. And I had nursed three babies. So I had a little bit of saggy, you know what I mean? So I was like, I just want things symmetrical. And, but then, you know, I had that scare after the surgery. And I thought, if there's any kind of problems and I still-- like my right side looks more natural than my left side right now after my surgeries which is a little bit frustrating. Because it's like, did I really have to do that? Was that necessary? You know? I almost made it worse. You know what I mean? And then-- but I think you just kind of got to make a decision and stick with it and be confident and happy in the decision that you made.
Medical Prophylaxis
This summary has focused on prophylactic surgery. However, medications are also used to reduce risk of recurrence or another cancer. For example, anti-estrogen medications like Tamoxifen are often prescribed for people at high risk for breast cancer. Individuals facing the option to take prophylactic medication often face the same sort of dilemmas as those who are offered surgery. As with surgery, the choice to take medication can be deeply personal. Visit our module on breast cancer to learn more about people’s experiences with Tamoxifen.