"I kept asking myself, in my gut, 'What do you think you should do?'"
Sarah Ammerman, 33, faced a decision she'd never anticipated. Diagnosed with invasive ductal carcinoma, the married stay-at-home mom and freelance writer from upstate New York was given a choice like many women facing breast cancer for the first time: have one or both breasts removed immediately, as a preemptive measure, or opt for a lumpectomy, often called "breast conserving surgery," in which the tumor and some of the surrounding tissue is removed.
Determining that both options gave her a good shot at survival, Ammerman chose the latter. But the choice wasn't easy, and she encountered what, at times, felt like a bizarre lack of empathy and understanding.
"I did get responses from family and friends saying, 'why wouldn't you go all the way with it?'" Ammerman said. "A lot of people, when I say, 'I chose lumpectomy', just say 'why?'"
For many women with breast cancer, the fate of their breasts is clear. Because they have multiple tumors in different areas or tumors that are too large relative to their overall cup size, their doctors' instructions are straightforward: Get a mastectomy -- the complete removal of one or both breasts.
But other women, like Ammerman, get fuzzier advice: They are told they can have a lumpectomy or a mastectomy. Experts offer their opinions, but selecting a course of action can come down to little more than an informed best guess. The health benefits and risks must be weighed, all of which could affect how their treatment unfolds. The decision is also fraught with cosmetic and emotional concerns. How important is it for a woman to keep her breasts? Will she be scared about the breast cancer returning? What will her breasts look like when the surgery is over? How will she feel about them? If the cancer comes back, will she blame herself? Will her family blame her?
Here, three women who weighed all of those questions and ultimately opted for a lumpectomy discuss how they decided to keep their breasts -- starting with Ammerman.
Sarah Ammerman, 33, was diagnosed with triple negative, invasive ductal carcinoma. She has been cancer-free for one year.
Last October in 2011, during a routine OB appointment, my doctor found a lump in my breast. Within a week, I had a biopsy, and a week after that I got the news that it was, indeed, cancer. My surgeon thought the cancer was well-contained and early on said, "you're a very good candidate for a lumpectomy if you would like to pursue that." I spoke to my oncologist who said it was a good option, but that I should also really consider a mastectomy.
They throw all this information at you, but the decision is yours. I found it kind of agonizing because someone isn't just telling you, "OK, you have to have a mastectomy." You're thinking, "I hope I don't make the wrong choice.” Being in control is a good thing, but at the same time, it's overwhelming.
I did have a moment of, "if I do the lumpectomy and two years later the breast cancer is back, am I going to second-guess myself?" But the more I spoke with my doctors, I realized there are so many things that go into why you get cancer. I thought, I have to treat the disease I have now, rather than the disease I’m worried I might have 10 years from now.
I have two fairly large scars right next to each other, one on the breast and one under my armpit. The scar on my breast wasn’t supposed to be as big as it is, but they had to remove some skin. When the bandage came off, I was very overwhelmed. I couldn’t believe how big it was; it seemed huge. Now, I barely notice it. I just think, “this is how you look." The scar hasn’t changed in size, but in my mind it has become smaller.
In one sense, I still associate my breasts with sexiness and femininity. But treatment does desensitize you. During normal life, that many people would never see you topless! During radiation, every single day, two men and one woman saw me topless. You do stop looking at your breast as a sexy thing, because there’s nothing sexual about being in treatment. [laughs]
If anything, I think I'm less critical now of my breasts now than I was before. [I was] always looking at myself thinking "Oh they could be bigger, they could be better. They could be nicer or whatever." And now I look at myself ... and I'm like, 'Oh my God, look at the human body! Look at the power to heal!"
Ginny Gilcrease, 43, was diagnosed with stage 2 invasive ductal carcinoma in 2010. She is mom to a 5-year-old girl and 4-year-old twins, and works as an office manager for an agriculture culture company in LA.
When you hear those words, “You have cancer,” your life falls apart. My daughter was almost 3 and my twins were just barely 18 months. I remember looking at them and wondering if I was going to see them grow up.
Had my doctor recommended a mastectomy for my prognosis, I would have done it, absolutely. But with all the facts, all the research I did, I felt good about trying a lumpectomy. I knew if [the cancer] came back, I could do a mastectomy then. I've always had a love-hate relationship with my breasts, but when push came to shove, I didn't want to lose them. They are a part of what makes me feminine. I breast-fed my children with them, and I was a new mom when I was diagnosed.
I'm still squeamish about my right breast, the one that was operated on. It's still really tender where the tumor was taken out, and there is some deformity. I sometimes shudder when I look at my breasts naked, because it was such a draining experience I went through. I'm STILL very much in the healing phase psychologically. I still cry. I'm very, very fearful that it's going to come back, but I take my meds and try to stay positive. It's in the back of my mind all the time. But I'm so grateful to have my breasts. I'm healthy. I got through it.
My breasts still feel very sexual, but I can be self-conscious about them. Not much has changed in our sex life -- my husband knows to be very careful -- but I try not to have my shirt off around him. I sometimes joke, one of my breasts is like Pam Anderson, the other is Grandma. I’ll be honest, he’s a boob man. But I have a gem of a husband [begins to cry]. It never, ever bothers him, or if it does, he doesn’t show it.
Women need to be empowered to make their own decisions. What my doctors told me weighed very heavily in what I did, but at the end of the day, I knew I needed to be happy with it. If someday my cancer returns, I'll still know that at the time, I made the right decision for me.
Katy Jacob, 37, lives with her husband, their 7-year-old daughter and 4-year-old son in Chicago, where she works as a business economist for the Federal Reserve Bank. She was 34 when she was diagnosed with triple negative invasive ductal carcinoma.
In May of 2010, I felt a lump in my left breast. I was nursing my infant son at the time, and I went into see my gynecologist who told me I probably had clogged ducts from nursing. I found out on May 4 that I had three cancerous tumors. A month after that I had a lumpectomy, and two and a half weeks later, I had to go back in because I had unclear margins. [Unclear margins mean cancer cells are seen at the outer edge of the tissue that was removed; another round of surgery is usually necessary.]
I wanted to have the least invasive treatment possible. Not just from a cosmetic perspective, but because surgery affects the muscles in the chest. I'm very active -- I have two young kids, and I didn't want to have a long recovery time.
There are a lot of people who would be very nervous about having to continue to have mammograms for the rest of their lives, so the mastectomy is put out there as an option. To me, when it's the week leading up to a mammogram (I now have to go for them every year; before it was every six months), yes, I'm very nervous. But it's been worth it to have a less invasive surgery. I have been "NED" -- no evidence of disease -- for three years.
Cosmetically speaking, I was just unbelievably lucky. My scar tissue filled in. I have a small, half-moon-shaped scar and kind of a dimple on that side of my breast. The biggest issue is the pain from the scar tissue, and I have some range-of-motion issues. I had to quickly wean my son when I was diagnosed. Weaning is always an emotional process, but it's definitely emotional if you have cancer. My son started calling the pacifier “mama.”
I touch my breasts a lot more now, just to appreciate what’s left. But I don't think of them as sexual anymore, and that hasn't changed in the years since I was diagnosed. At first, I thought maybe it was because there was physical pain associated with them, but now I think it's more like some deep psychological association with suffering. I feel a little bit guilty saying that, because I know there are so many women who do not have the option. Like, if I say I'm worried about a mammogram coming up and I'm talking to a woman who's had a double mastectomy, she'll commiserate with me. But at the same time, I know what she's thinking, which is that I'm lucky that I still have my breasts.
These accounts have been edited and condensed.