Elizabeth Edwards discussing her treatment

Elizabeth Edwards: Her Breast Cancer Experience

Elizabeth Edwards, wife of former senator and presidential candidate John Edwards, knows her breast cancer is not going away.

Edwards' breast cancer, first diagnosed in 2004, has recurred. It's in her bones, and, as Edwards writes in her new memoir, Resilience, "it wasn't leaving. Not ever."

That knowledge -- that she will one day die from breast cancer or die with it -- is at the heart of some hard-won lessons about dealing with breast cancer -- and getting aggressive about its early detection.

Edwards, who turns 60 in July, shared what she's learned about breast cancer -- and her advice for breast cancer patients and their loved ones -- in an interview with WebMD.

Finding the "Plum"

In October 2004, Edwards noticed a lump about the size of a slice of plum on the side of her breast. At the time, she was showering in a Wisconsin hotel bathroom; she was in Wisconsin supporting her husband as he campaigned as the Democratic vice presidential nominee.

Having had a harmless breast cyst before, Edwards thought the new lump was another cyst.

"I'd like to say that I found it because I was doing a breast exam," Edwards says. "No. I found it because it was just so friggin' large. In fact, I was thinking, 'How could I have not felt this yesterday?'"

The American Cancer Society considers breast self-exams an option, but not a must, for women in their 20s and older. The American Cancer Society recommends that if a woman does breast self-exams, she should ask a health professional to review her technique at her next checkup. Most breast lumps aren't cancer but should be checked by a doctor, and any breast changes -- whether found during a self-exam or not -- should be reported to a health professional right away, notes the American Cancer Society's web site. 

Edwards says she wasn't at high risk for developing breast cancer. She had an aunt who had had breast cancer, but there was no other family history of the disease.

Although having a family history of breast cancer makes breast cancer more likely, the disease doesn't run in the family for most breast cancer patients.

A week after first noticing the "plum," Edwards secretly had a mammogram and ultrasound back home in Raleigh, N.C. Next came a biopsy in Boston, the day after the presidential election, which confirmed that the "plum" was cancer. Further tests showed cancer in several lymph nodes, resulting in a diagnosis of stage II breast cancer.

"I Knew Better"

Before her breast cancer diagnosis, "I didn't get screening the way I should have," Edwards tells WebMD.

She's far from alone in that. CDC data show that in 2005, about 36% of women in their 40s, about 28% of women 50-64, and about 36% of women 65 and older hadn't gotten a mammogram in the previous two years.

"I Knew Better" continued...

"I knew better, just like they know better," Edwards says of women who delay getting routine screening mammograms.

It wasn't that Edwards was afraid of getting mammograms -- it was more about the inconvenience and temporary discomfort and the fact that she didn't think she was at risk.

"The result of that is I found out later than I could have" about the cancer, Edwards says. "Had I done the testing I needed to do, the treatment I would have gotten might not have been as aggressive."

"You don't save yourself anything" by putting screening off, Edwards says. The breast cancer is either there or it isn't, whether you get screened or not.

"It does not change the reality," Edwards says. "It only changes your options."

Edwards suggests that women buddy up with a friend to remind each other to make routine mammogram appointments and stick to them. "It never occurred to me to find a mammogram partner, but that would have been a great thing to do," she says. "I wish I had done that."

Initial Treatment

Edwards got treated for her original tumor from 2004 to 2005. First came chemotherapy to shrink the tumor, then lumpectomy -- surgery to remove the tumor while preserving as much of the breast as possible.

Besides chemotherapy and surgery, Edwards got radiation therapy, and she also triedaromatase inhibitors, which are drugs that block production of the hormone estrogen. (Edwards says her breast cancer is mildly sensitive to estrogen and another hormone, progesterone.)

Edwards says the aromatase inhibitors were "very hard on my joints," so she tried several drugs during that period before completing her treatment in May 2005.

But it wasn't just a certain type of drug that was rough. "Every part" of her initial treatment was physically hard, Edwards says.

"Basically, your body just ached all the time," she says. Edwards was on a two-week cycle of treatment.

"It had a particular rhythm, where you'd start to feel better again just as you're about to get the next treatment ... you'd have maybe four days where you felt great, and then you were taking other medications that made you incredibly hungry -- steroids -- where you just sat in front of the refrigerator and grazed. And then the days after that when I was ... very achy, very tired, and it was just sort of hard to get excited or up for anything."

Help at Home

The Edwardses have three children -- Cate, who is 27, Emma Claire, who is 11, and Jack, 9.

When first going through breast cancer treatment, Edwards says her husband helped her cope, especially after the 2004 presidential campaign ended.

"It was like having somebody at home who didn't have a job, except he made his job taking care of me," Elizabeth says. "He would take the kids to the park and I would rest, and then I would read to them and he would cook dinner. He took a lot of the jobs that you might traditionally think of as the caretaking female jobs, just to make certain that the family operated the way that it should. When I went for radiation treatments, I had it first thing in the morning and he got up every morning, got the kids breakfast, and got them off to school."

Help at Home continued...

Edwards says breast cancer "must be very hard ... from the perspective of someone who loves you."

"They feel they want to take care of you and they feel a certain amount of hopelessness, because there's obviously not a whole lot they can do that would change your outcome. And if you really express to them how frightened you are or how depressed you are, for them that's fairly depressing news, because they can't do anything about it; it's outside their control. And I hate that," Edwards says.

"So I've tried to walk -- I think a lot of us do -- a pretty narrow path of being forthright about our disease but not entirely forthright about our fears. I find that's true of me, and from talking with other women, I think that's true of them as well."

Being "Incredibly Honest"

In talking with her children about breast cancer, Edwards prizes honesty.

"I think the most important thing -- and the younger the member of your family is, the more important it is -- is that you be incredibly honest, even though you might be giving a grammar school explanation of something," Edwards says. "At least when your children look back on what you said to them, they will know that you were honest with them. We may not get chances to correct this, so we have to get it right the first time."

Edwards says she and her eldest child, Cate, have talked about Cate starting breast cancer screening early. "Actually, I talk about it with young women all the time and the problem, of course, is fighting the insurance companies that say it's not to be paid for. But I'm not worried about [Cate] in terms of getting what she needs, because she's very outspoken. She makes sure she gets what she needs," Edwards says.

Breast Cancer Returns

In March 2007, nearly two years after finishing her breast cancer treatment, Edwards hurt a rib "moving a box or my husband hugged me or something, and I got it checked."

A chest X-ray led to more scans and ultimately to the news that that her breast cancer "had, in fact, spread to my bones," Edwards says, noting that there were also "little places" in her lungs and liver that might also have been cancer. Breast cancer that has spread to other organs of the body is stage IV breast cancer.

The mysterious spot in the liver "was fairly inconsequential" and hasn't changed during treatment, Edwards says. And the question mark about her lung "turned out to be nothing, because we never saw any change there," she says.

And then she stops herself. "Trying not to tempt fate," Edwards says. "You're always hesitant to say something."

Breast Cancer Returns continued...

In the fall of 2008, Edwards says she felt some pain, so she searched the Internet for "bone cancer symptoms" and used WebMD's Symptom Checker.

"I checked and that allowed me to call my doctor and say, 'These are my symptoms and I'm concerned,'" says Edwards, who recommends that patients looking for health information online consider the reliability of the information they find before taking action.

Her doctor moved up an MRI scheduled for a few weeks later. It turned out that her cancer had gotten "slightly worse," Edwards says.

"I was very depressed by it," Edwards says. "But on the other hand, it meant that I could, in fact, be more attuned to my body than I'd previously been. And so that made me think, 'I'm not going to be surprised one day, I'm [not] going to go in there and they're going to say, 'You're falling apart.' I was going to know first."

As she dealt with her breast cancer, Edwards also turned to online support groups -- mostly as a self-described "lurker" who could stay anonymous, rather than having to reveal herself. "Any kind of celebrity throws the group off, throws the dynamic off, and it's not fair to people," Edwards says. "They have their own needs, and I have to be really conscious of that."

"Following Every Potential Avenue"

Edwards now takes a chemotherapy drug at home, another cancer drug intravenously every two weeks, and a third drug that helps protect the bones of people whose cancer has spread to their bones.

Edwards is hesitant to make public the specific drugs she takes, in part because she doesn't want other breast cancer patients to second-guess their own treatment if it's different from what she's taking.

Breast cancer treatment isn't a one-size-fits-all recipe. It's tailored to each patient's cancer characteristics. "I just don't want anyone thinking they're not getting the treatment they need," Edwards says.

She's also not ruling out other types of treatment.

"I'm interested in following every potential avenue, but I know that I don't want to give up my traditional treatment that I'm on right now in order to experiment," Edwards says.

"What I've told my doctors is that if there are ever opportunities to do something that's not consistent with my treatment -- if I can put a chicken on my head and that's going to help, and it won't interfere with my treatment, then I want it," she says.

The Things No One Tells You

Apart from the aches and pains, the drugs and scans, the fears and stresses, there have been little things about breast cancer that came from out of the blue -- like losing her nose hair.

"Nobody ever tells you that. And of course you're sneezing all the time because you've got nothing to stop things from going up and nothing to stop things from coming down."

The Things No One Tells You continued...

And some of the details of the disease can get lost in the sea of tests and appointments. Edwards says she has blood tests all the time, but she isn't always told if that day's test is to check on a tumor marker or whether the results would be available while she gets her drug infusion.

"It would have been great if a nurse had sat down with me and opened up my medical records and said, 'Here's what this is; this is what we're finding.'" But Edwards says she tries not to ask "a thousand questions ... because you know they're not going to get recompensed" for extra time. "That doesn't happen that often, and it would be really helpful if it did."

Edwards also says being more active during her treatment might have helped her feel better.

"I was so achy that I wasn't active in any way, and I might have actually found that I would have given myself more good days ... had I been active as I should have been during the actual treatment. It's just too easy just to lay back down and say, 'I'm just too stiff; I don't want to do it.'"

Life Today

Edwards says the personal stresses in her life, including her husband's infidelity, didn't make it harder to deal with her breast cancer recurrence. That's partly because she'd already weathered a searing loss, the death of her son, Wade, in a car accident years earlier, when Wade was 16.

In the wake of Wade's death, Edwards says, "I'm not as afraid of death" for herself and that cancer is "not in the ballpark of the worst things that have happened to me. His death was so huge."

Edwards says her kids are "doing pretty well," and although they don't often bring up cancer directly, "it's clearly part of their consciousness."

For instance, Edwards says her younger daughter, Emma Claire, recently asked her if she likes romaine lettuce, having read about it being an example of a healthy food for people with cancer.

"Even though she's not talking to me about it all the time, it's obviously on her mind. And, that's good for me to know," Edwards says. "You have to listen to those cues because it's not going to be, 'Mom, I'm thinking about cancer all the time.' Something's going to come to you in some different form from that."

Beyond her own health and her family, Edwards is also passionate about health care reform and promoting breast cancer awareness. And she's willing to put herself out there, even if being a well-known breast cancer patient is a double-edged sword.

"I have competing responsibilities, I think, as someone in the public eye with breast cancer," Edwards says. "One of them is to say to people with breast cancer, 'This is really hard what you're going through. Believe me, it's hard for everybody. ... This is perfectly normal to feel exhausted or perfectly normal to feel irritated sometimes, and don't think less of yourself because those are your feelings.' On the other hand, we don't want to be treated as if we're invalids. So when I'm feeling lousy, I don't feel like I have the same permission to share that, but I do want people to take care of us -- to take care of my sisters, in a sense."

"So I try to be strong, but not too strong. ... You're walking a really difficult line, and I don't think I always do it right. But I'm trying to get it right over time."