Choices about Cancer Treatment

All cancer patients will face decisions about their treatment. Doctors use evidence of what has worked for other patients to make recommendations, but ultimately it is the individual who must decide for him or herself. Should I have surgery? Do I opt for both radiation and chemotherapy, or just one? Is Tamoxifen the right choice for me? Am I comfortable with watchful waiting? The presence of a known genetic mutation or strong family history of cancer often shapes these decisions.  This part of the website focuses on what people we interviewed said about their treatment choices.

How Genetic Risk Shapes Treatment Decisions

Their perception of genetic cancer as inevitable and particularly dangerous persuaded many people we interviewed to opt for aggressive treatment.

 

Lisa S. talks about how knowing her BRCA+ status affected her decisions.

Lisa S. talks about how knowing her BRCA+ status affected her decisions.

Age at interview: 56
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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But once I got the DCIS, I realized I needed people who had gone through breast cancer as well as having the BRCA gene because that's a whole other element. Knowing you've got this hereditary gene means that your chances of getting breast cancer are I think between 60 and 80. And you have different choices once you come up with DCIS. DCIS, for most of the population, could maybe mean a lumpectomy because the abnormal cells are non-invasive. They're in situ. They're in one place. They're just abnormal. So if you do a lumpectomy, and you get clear margins, boom, you're on your way out the door. But with BRCA, because you have between a 60% and 80% chance of getting breast cancer, you have to consider bigger options, which I didn't understand, when I first learned about BRCA. I needed community to make me figure this out. And then I wanted-- the Komen community was less important to me than the BRCA community. I think because, again, if I was just a regular person, who had discovered breast cancer, I could have just done a lumpectomy. But you have that BRCA, and you've got to speak with people. You've got to figure out, “Well, I had it in one. Do I do it in the other?” “What are my choices? What are my possibilities?” And you just feel-- you feel a little bit-- I don't mean damned, but you just feel like, “I eat right. I exercise. I'm thin. I'm all those things.” But yet, still, I have to deal with this gene that makes me choose options that most people who would have DCIS would just choose a lumpectomy. But I got to go the full meal deal. I got to get rid of them all. And I think having that support network makes you feel like, “Oh, I'm not alone. There's other people who had to decide this before me. They had to figure this out. I need a group. I need a hug.” I needed that hug, ooh.

 

As a young man, Matthew also opted for major surgery.

As a young man, Matthew also opted for major surgery.

Age at interview: 44
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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So, they found a tumor in the, part of my, the transverse part of my colon. And you know, I went through that diagnosis, met with the surgeon. And decided, OK, we're going to do surgery. My view at that point was, yep, get it out. Take the cancer out. Take as much of the colon out as you can to reduce the risk of future recurrence. And so I think it was within a week, scheduled to have surgery, which was at the end of my junior year of college. So I had the subtotal colectomy, which removed all but about eight inches of my colon, and then went through a course of six months of chemotherapy through that summer and fall. And, yeah, so that was my initial experience, personally, with hereditary colon cancer.
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What was it like to be getting cancer so young? Were you in college, or? I just, wow.

I was. It was end of my junior year of college. So, yeah, I think there was youthful naivete, of just, an “I'm invincible” kind of that mentality. Not so much that I was invincible, because, I mean, I didn't believe that. But just, I attacked it. It was, this is what it is. And I'm a very logical person. So it was, OK, here's the diagnosis. Here's the treatment. Let's do that. Let's go through the steps, and move on to the next thing. So it was the end of my junior year. I had surgery the week of my finals. So I missed finals that week. I had to figure out how to make those up. I had an internship scheduled that summer in [LOCATION], where I was in school. And so I arranged to have my chemotherapy done in [LOCATION], so I could start my chemo there while I was doing an internship over the summer, and then continuing my fall and senior, or fall semester my senior year of college. So I just went through it, just did it. And never really, I don't know if I really processed it, or thought about kind of what it was to be going through that at the time. You know, I think it's hit me at different stages in life, as I've grown older and more mature. But I think it was just like, yeah, it is what it is, and move on.

Other people we spoke with, who had experienced several bouts of cancer, weighed the benefits of treatment differently and sometimes made choices that were less aggressive. Charlene was comfortable opting for less than maximal treatment for her thyroid cancer, a decision that was validated when her doctor told her “if it was me, no, I wouldn’t do it either.”

 

After her third cancer is diagnosed, Carrie places a high priority on quality of life.

After her third cancer is diagnosed, Carrie places a high priority on quality of life.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: Lynch syndrome
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But again, she and I had this discussion, too. Given my pancreatic cancer diagnosis and that prognosis, that’s going to surely enter into whatever we would decide for this. Because unlike 10 years ago, when it was like we're going to do everything to make sure this doesn't come back because I'm only 44, I want to live to be an old lady. You know, now, knowing that I have pancreatic cancer and that it's in the lymph nodes, it's like I don't have a 10-year plan, and I'm hoping I have a five-year plan. That would be great. But I’m not going to feel ill for a year, unless there's a really strong argument that that the payoff would be worth it. So I'm really, quality of life is much more important to me now, since quantity is shorter.

Being part of an identified population may also influence an individual’s choices about treatment. As Lisa J. noted, being able to talk to other people who are living with a BRCA mutation and thus similar genetic risk gave her access to an important source of information and reassurance when she was deciding whether to have a mastectomy.

When a patient has a known genetic risk doctors may be able to provide statistical information that can aid in making decisions. Being informed about the lifetime risk of cancer that is associated with a particular genetic condition can be useful when weighing choices about whether or when to undergo more aggressive treatment. Lisa J., who is BRCA+, talked about how “read[ing] that I had a 93% chance of having breast cancer between the ages of 50 to 70 or something” influenced her treatment decisions.  Cynthia, who is BRCA2+, plans to have major prophylactic surgery because “the statistics were there. It just was not in my favor.”

 

Ronnie wishes she had learned her BRCA2+ status earlier because it would have made her decisions easier.

Ronnie wishes she had learned her BRCA2+ status earlier because it would have made her decisions easier.

Age at interview: 40
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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I'm on tamoxifen.
Okay.
So that's for five years. So, it'll be-- I started it in June.
Okay.
…And so, but if I'd gotten the results of the genetic tests-- like if I'd done it earlier-- because one thing I was having a hard time deciding whether to take tamoxifen or not, because I-- it was DCIS. You have the option of taking it or not. And I eventually decided to take it. But if I had done the genetic testing earlier, I would have—it would have been a much eas—I knew I would have had to take it.
Okay.
Tamoxifen is one of the few things that actually helps for genetic breast cancer.

Because it is important for patients to understand how their genetic conditions may affect their diseases, Lisa S. noted it is essential to find doctors who have this expert knowledge and can explain it. Her surgeon, she reported, “knew BRCA.” “You should always get a surgeon who knows BRCA,” she advised, “because they know the statistics” and thus can make solid recommendations tailored to the individual’s situation.

The uncertain nature of many genetic mutations, however, means there is no guarantee that experts will agree in their treatment recommendations.

 

Paul talks about what happened when his doctors gave him conflicting advice.

Paul talks about what happened when his doctors gave him conflicting advice.

Age at interview: 46
Cancer-Related Experience: Cancer
Type of Inherited Risk: A polyposis syndrome
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The issue with that practice and with the surgeon-- and the surgeon was great, he was he was an amazing surgeon-- but there were a lot of communication issues. And that initially, with the information he had, he was like, “yes. OK. Let's go with this.” But then, you know, like any surgeon, he wanted his own people to do tests. So I had some tests done with his people. And then he had changed his mind and was like, “well, I don't really think we need to do this.” And so he looked up some information. And then I saw my gastro doctors again, and they were like, “no, you really should have this done.” And then I speak to the surgeon, and he's frustrated. And he's like, “well, I thought we talked about this, and this is maybe not the best way for you to go.” So it was kind of-- it ended up with, “well, it's your decision,” from both ends. Because, again, there just wasn't enough information. And even though both teams-- the surgical team and the and the gastro team-- were both very good, they just-- nobody had enough information to say, “yes, let's pull the trigger on this.” So my wife and I just eventually took all the information that we had and made the decision.
How long was that period between the identification of the stomach polyps and the surgery? It sounds like it was a while.
Yes. I want to say it was at least a year. It might have been closer to 2. So somewhere between-- again, I said, my conception of time is very is hazy at best, but it was it was between a year and two years of just going around and around and around. And again, it was it was nobody's fault.
Right.
Nobody to be the one to say, “don't have the surgery,” and then I develop cancer. And nobody wanted to be the one to say, “you should have the surgery,” and only to find out, “well, you didn't really need it.” And I completely understand that. And that was the position that I was in also. I mean, I don't want to have such a drastic surgery if I don't need to. But I also don't want to not be proactive, and then find out later that that was the wrong decision.
Yeah.
So yeah. And again, it goes back to being to being your own advocate. Because there were there were two medical teams that were highly knowledgeable, and very good, and communicated very well, but just disagreed. And it kind of put me in the middle. And it’s but on the plus side, it does force you to become knowledgeable about it. Because, you know, again, you have to be the one who makes the decision. And I know that other people have run into issues with letting a surgeon or their doctor tell them what the course of action is, and then agreeing to it and doing it without becoming knowledgeable about it. That’s just as dangerous.
Right.
So regardless of what a doctor tells you, I mean, you have to, obviously, weight that information heavily, because that's what they're educated and trained to do. But, you know, every case is unique, and so you have to become knowledgeable enough to assist in that decision.

How Family History Shapes Treatment Decisions

Many people interviewed for this website, including both those with and those without known genetic risk factors, have significant histories of cancer in their families. These individuals talked about how family history influenced their treatment decisions.  
 
Sometimes, people told us, they are able to draw upon the experiences of family members who have been living with cancer and/or cancer risk for a while to understand what it’s like to have a particular procedure or treatment. This knowledge helps them make their choices. When Briana was making decisions about reconstructive breast surgery, she remembered her mother’s bad experience with silicone implants and opted not to have implants herself. For Ginny, seeing what a close family member went through with complications related to reconstructive breast surgery influenced her decision to have a lumpectomy followed by chemo and radiation instead of a mastectomy with subsequent reconstruction.

Other people we interviewed described worrying that they will suffer in ways they have seen their relatives suffer. The hope that they can avoid similar suffering drives their decisions.  Sarah and Peggy, who come from families with histories of cancer, both chose fairly aggressive treatments that they believed would help them to avoid the bad outcomes they witnessed in their older relatives.   

Having had a parent who had cancer may affect choices in emotionally complex ways.

 

Lisa J.’s memories of her mother’s illness and death from breast cancer color her own experiences with the disease.

Lisa J.’s memories of her mother’s illness and death from breast cancer color her own experiences with the disease.

Age at interview: 54
Cancer-Related Experience: Cancer
Type of Inherited Risk: Identified breast cancer mutation
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I think it also maybe invoked, you know, memories of our mom. And really watching that as kids, you know, that's a trauma unto itself. I didn't even think it was traumatic until like I speak about it now or remember at times speaking about it, and there are certain times that, you're a kid, and you're watching your parent or, in this case, your mom, and I remember going into the hospital with her as a kid. I was a taller kid, and I could speak in a way that maybe gave me a few years. But I remember going up the back staircase. They didn't have the same kind of security that they had then, and I would go up to this back space, because I was too young to go see her. The age was like 14, you know, at that time. So I was too young. But, you know, I was a taller kid, and I could, you know, get through a conversation where it seemed like I was older. So sometimes I could fool the guards, and sometimes I couldn't. But I always-- I found a way like off the cafeteria to go off the stairwell and go see my mom.
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And then, you know, you're flooded with-- this is what happened with my mom, and then the more rational side of you at some point kicks in. Oh you know, given the time that that happened to your mom, this happened to your mom in like 1970s, right? And she was diagnosed probably at a later state. They didn't know as much. So you're trying not to like-- you're trying to brace yourself, because there is that moment if I allowed myself, I could have just, like, broken down. But I chose to sort of go in the-- let me just keep going and plan this and do this. And then I'll break down later, you know?

 

Cynthia, a parent, knows how difficult it is to be the child of a cancer patient.

Cynthia, a parent, knows how difficult it is to be the child of a cancer patient.

Age at interview: 50
Cancer-Related Experience: Elevated risk
Type of Inherited Risk: Identified breast cancer mutation
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It made me realize a couple of things. That especially with my mom, because of her age, was that if there was something that I could do to keep my children from having to go through what we went through helping my mom and watching my mom, not that we don't love her and didn't want to help her, but just how much it drains a family and how hard it was on her. And she's still, you know, struggling. That's, a pretty big cancer compared to the breast cancer. And, and I hate to say that, like you can sit there and measure. But the success rate of going into remission just isn't there for the gynecological cancer like it is for the breast cancer. It's a fight that typically just buys you a few years instead of, you know, living cancer-free after so long. So it was my goal to do everything I could to make sure my children didn't have to go through what we were going through, so they didn't have to see me go through, you know, what we had to watch our mother go through.

Insurance and Treatment

The section Insurance Coverage and Financial Issues summarizes what people we interviewed said about the impact of cost and coverage on their treatment choices.