By Laurie Tarkan
WebMD Live Events Transcript
Mother-daughter relationships take on new meaning when breast cancer is involved. Emotional and genetic issues unite, but can also strain family ties. We chatted about this with Laurie Tarkan, author of "My Mother's Breast".
The opinions expressed in this transcript are those of the guest and have not been reviewed by a WebMD physician. If you have questions about your health, you should consult your personal physician. This event is meant for informational purposes only.
Moderator: Welcome to WebMD University: "Stories of Survivors: Your Breast Cancer Guide." Joining us now is our guest for today, Laurie Tarkan, author of My Mother's Breast: Daughters Face Their Mothers' Cancer.
Laurie, tell us about how you came to write My Mother's Breast. This is not a personal account, but a collection of stories of real mother-daughter relationships, correct?
Tarkan: Yes it is. Actually I'm a health journalist and I wrote an article on the subject for McCall's Magazine. But while researching the article and speaking with daughters whose mothers have breast cancer I realized that many daughters really felt completely alone in what they were going through. And there were no resources, books, support groups for daughters, so I felt like something like this would really be helpful to women. And personally, I guess I felt a connection with the daughters because of my own experience. My mother died when I was 11 years old. And though she didn't have breast cancer, she had a liver disorder, I felt like a lot of the emotions were similar.
Moderator: You mentioned a lack of support groups for daughters. Is that still the case? Are there joint support groups available for moms and daughters to attend together?
Tarkan: I think it has gotten better because since I've written the book, many hospitals have opened centers for women with high risk of breast cancer. And many of these centers now offer counseling and support groups so I think there's more out there because of that. There are groups like Share and Gilda's Club that offer family support groups.
Moderator: In the preface of your book you write about the experience of losing your own mother and how you were kept from knowing the extent of her illness. From that experience and from your research for the book, what advice would you give to mothers with younger children about how to discuss their illness?
Tarkan: My mother was sick in the early 70s and things have changed a lot since then. Today people are more open with children when talking about illness and serious topics like that, so I think that most experts recommend that you do talk to your children and what you say and how much detail you give depends on the age of the child. But not saying anything is what can be damaging because children always sense when something is wrong, and if you don't give them a realistic explanation, they are going to imagine something far worse than what is happening.
Moderator: What did you discover when you looked at the reversal of the caretaker role that can occur when mom gets sick?
Tarkan: This is one of the bigger issues that most daughters talk about. Caregiving typically falls on the shoulders of the daughter. Many of the women I interviewed talked about having to be the emotional and physical support to their mothers and taking care of your mother can be traumatic because the mother/daughter relationship is reversed. I think with breast cancer, because it can strike women at a young age, and therefore their daughters are young, they may not be emotionally prepared for this role reversal. This typically happens when we are older and our parents are elderly. So what I've heard from women is that they've put their lives on hold. They've postponed going to college, maybe even neglected their own families while taking care of their mother. So it's a tremendous, life-altering burden for some people.
Member: A friend of mine nearly lost her own family (a husband and a young child) when she spent so much time looking after her mom after she was diagnosed with breast cancer. If this ever happened to me, what advice do you have for balancing my roles of wife, mommy, and daughter?
Tarkan: I think it's easy to get swept up in taking care of your mother who's very sick and needs you but you're really not any help to anyone if you are stretched to your limit. So I think what experts recommend to caregivers is that you take care of yourself as well. You have to set limits and do things for yourself; otherwise you'll run out of resources and won't be able to help your mother. To do that you have to call on others. Hopefully, there are some available to help with the necessary caregiving. There's no real answer to how much time you can spend with someone who's sick, it's really what you're capable of. And everyone has a different threshold.
Moderator: That can include asking the men in your life to change diapers and cook meals if they normally aren't so inclined!
Tarkan: And it may mean asking people to help with your own kids (if you have children), while you're taking care of your mother.
Moderator: Did you find that some daughters felt guilt that they couldn't do more for their mothers?
Tarkan: I think that some people felt guilt that they couldn't be there for their mothers but the reason was more emotional than practical. I think one of the hardest things is to see your mother sick and some of the treatments would make her very sick, and it's hard to be there and watch that. So some people may avoid their mother during her time of illness, and then feel guilty about it later. These fears are normal and people can recognize that, yes, it is difficult to see your mother this sick. Then this may help them come to terms with those feelings.
Member: How do I deal with the guilt of living out of state from my mother? She lives in Florida while I live in Ohio. I have considered moving my family there to be near her. If my mother doesn't beat this, will I regret not relocating to be closer to her?
Tarkan: This is a question many people face when their parents are sick, and I'm sure that many don't relocate but try to be there as much as they can. I don't know if your mother is end-stage but if she is you probably want to try and spend as much time as you can with her. But if it's cancer that's caught early and there is a lot of hope of survival, you could probably find other ways of being there for her than moving.
Moderator: What common threads ran through the mother-daughter relationships you looked at?
Tarkan: Definitely the fear of losing mother. That's one of the first feelings that people express when they hear cancer, and also the mother/daughter role reversal that we talked about. And on a very positive note, many mothers and daughters became closer because of this experience, achieving an intimacy that they never would have if their mother weren't sick.
For others, though, it was more frustrating because they didn't have a great relationship with their mother; this was not uncommon. So there was a frustration of not being able to help their mothers because they didn't have good communication so it was hard for them to talk, or maybe it was hard for the mother to ask for help, and so the daughter ended up feeling helpless and frustrated. In terms of that issue, I would highly recommend that daughters do as much as they can to open communication with their daughters. The daughters I interviewed who seemed to fare the best emotionally with regard to their mother's prognosis were the ones who were able to be very open and intimate with their mothers.
Another thread is the fear of getting breast cancer yourself. Pretty much anyone whose mother has breast cancer thinks they will, too, and many daughters exaggerate their risk of getting breast cancer.
Member: I suppose the focus is on mother-daughter instead of mother-son relationships partly because of the genetic link and the fear that can arise in a daughter when her mother is diagnosed. But just how much more likely is a woman to get breast cancer if her mother had it?
Tarkan: First, I'd like to talk about why women automatically feel that they have increased risk. One reason is that daughters feel a strong identification with their mother's body and a sense of continuity. So this kind of intuitive feeling is then heightened by the widely publicized hereditary link, and the combination makes women feel doomed to get it. Another thing that can heighten fears is what her mother's outcome was and how her mother dealt with the cancer. If you experience your mother suffering and complaining and miserable then you would naturally think that is what the experience of cancer is. If your mother is more optimistic and has a more positive outcome then you're less likely to perceive cancer as a death sentence.
Now to answer your question: I think that the majority of daughters whose mothers have breast cancer do not have a greatly increased risk. Most breast cancers are random and are not caused by the defective BRCA gene. An estimated 3-7% of women diagnosed have inherited a mutation in the BRCA gene. So a woman has to have a substantial family history of cancer for there to be a hereditary component in her family. Some signs of a substantial history include:
- Having two or more relatives diagnosed before age 50
- Having a relative who had breast cancer in both breasts (which would be two cases of breast cancer)
- Having a case of ovarian cancer in the family
Moderator: For a daughter who feels anxious or fearful about someday having breast cancer herself, what are concrete steps she can take to reduce her risk?
Tarkan: I think it's a good idea if you think you are at high risk to see a risk counselor. These people generally work at breast cancer centers and they can give you an assessment where you'd learn what your true risk is. This is something that is helpful to those with high anxiety about their risk because often their true risk is much lower than their perceived risk. And it's also helpful in dealing with the anxiety to be proactive in your healthcare. Some general guidelines would be eating a healthy, low-fat diet, exercising, and getting the recommended mammography. These things can give you a greater sense of control over the disease.
Moderator: And no smoking!
Tarkan: Right, no smoking. Also, some studies have talked about the link between alcohol and breast cancer, and people who do have a high risk probably want to talk to their doctors about taking any hormone replacement therapy as this has been shown to increase risk of breast cancer.
Member: What advice do you have for daughters going through the grieving process after a loss due to breast cancer?
Tarkan: I think it's very important in this situation to find people you can talk to and get support. That could be either through friends or perhaps more helpful would be finding a group of women who have gone through similar loss. Not to plug my book, but people have told me that reading the stories, because they are stories of women, some of whom have lost their mothers, was very helpful in allowing them to acknowledge some of the feelings they had, both while their mothers were sick and after they died. Talking to people or reading stories of other women in similar situations is also very helpful while you're going through it, while your mother has cancer, the main reason being that it helps people feel less alone and helps them feel that their feelings are normal, whether it be guilt or sadness or resentment.
Moderator: In My Mother's Breast you mention the "element of mystery surrounding this disease. ... There are no assurances to grasp onto." That can lead daughters to imagine the worst for their mothers. What are some things we can do to counteract that?
Tarkan: I think it's very important to educate yourself about your mother's cancer because the more you know the less scary it seems. And what you learn will help you understand that there are real steps your mother can take to survive cancer, and that helps you regain a sense of control.
Moderator: One chapter in your book is called To Test or Not To Test. What did your research reveal about the options available to women and the decision-making process involved in choosing to test?
Tarkan: I think that genetic testing is a complicated decision. I think women seek out genetic testing for various reasons. Some can't live with their uncertainty of not knowing and some may hope that it will ease their anxiety if they test negative. On the other hand, if you test positive, you know that they have to take a lot of steps to monitor themselves like frequent mammography, breast exams, and even ovarian cancer screening.
But there are problems with the testing and there are false-negative results and that actually may lead women to think that they have no chance of getting cancer, which isn't true. They have to follow the same screening recommendations as the general population. Another issue is concern about privacy. If you test positive for a mutation it may get on your medical records, which may lead to discrimination by health insurers and employers.
Moderator: We are out of time. Thanks for joining us, members, and thanks to Laurie Tarkan for being our guest. Her book is titled My Mother's Breast: Daughters Face Their Mothers' Cancer. You can email Laurie for more information on obtaining her book at [email protected]
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