Ask-the-Expert Online Conference
The Ask-the-Expert Online Conference called Family and Loved Ones featured Rosalind Kleban, L.C.S.W., author Marc Silver, and moderator Marisa Weiss, M.D. answering your questions about the issues surrounding family members and caregivers living with and caring for women affected by breast cancer.
Editor's Note: This conference took place in September 2004.
Questions from this conference
- Help husband, kids cope with cancer?
- Worried a sick friend needs medical help?
- Dealing with guilt-tripping relatives?
- Should husband be obligated to research?
- Tell family individually or as a group?
- Delicate way of informing over the phone?
- Help for anger at mom for hiding feelings?
- No support system available, what to do?
- Friend taking over emotions, too much advice?
- Best book on telling children about breast cancer?
- Husband depressed over breast cancer?
- Help family understand breast cancer "obsession"?
- How to help daughter deal with emotions?
- Talk to girlfriend about reconstruction?
- Husband's hostility after surgery normal?
- Best way for friends to provide support?
- Common for husband's health to deteriorate?
- Get scared wife to test for cancer?
- Anything a husband can do to ease fears?
- Advice to get sex life back with wife?
- Husband still finds wife attractive?
- Worried about friend running herself down?
- Avoid opinionated sister?
- Help mom be more active after diagnosis?
- Make kids feel better around wig?
- What kind of research put into book?
- Help wife be less passive about cancer?
- Wife okay to talk about diagnosis at family event?
- Help angry, frustrated husband with feelings?
- Availability of Marc Silver's book?
- Question from Website Question: As a cancer patient, I'd appreciate some suggestions about how I can realistically help my husband and (grown) kids cope with the anxiety and frustration they feel as my treatment drags on and on, and how to help them get their lives back to some form of "new normal," too. I can't fake optimism all the time, but I'd like to do something to help them feel better.
Rosalind Kleban, L.C.S.W.
An interesting question. What strikes me here is that you, who have so much on your plate, are concerned about taking care of your family. This may be a time where it would be beneficial to have an open exchange between all of you to figure out how you can each take care of each other. It's always the woman who takes care of the family. Right now, you need to take care of yourself.
It's too much of a burden to think that you have to adopt a public, positive attitude on how to help your family. You can't take their anxiety away. They have their anxiety, you have yours, and you all need to be open with each other about how you can help each other. It's not realistic for you to pretend to be optimistic all the time, and it's not good for your family. They all have to be open and honest about their feelings.
- Marc Silver Having lived through a year of treatment with my wife, I would have to agree with Roz. There's a very interesting study about breast cancer patients and optimism by Karen Weihs, and she found that patients who complained and didn't keep their negative feelings inside and let them out coped better with the stress of treatment. So that's something for husbands to keep in mind when their wives want to complain. Let them complain! Also, it's really okay for husbands and kids to cope with their feelings of anxiety and frustration by doing something for themselves. I think husbands need to ask permission from their wives before they take off for several hours, but it's important to go bike riding or shoot baskets and recharge a little bit.
- Question from Website Question: My friend has breast cancer. She doesn't want surgery, and the wound smells bad and it's oozing. How can I help her? Is there a chance that she will be healed without the breast being removed? I am so worried.
Rosalind Kleban, L.C.S.W.
This is a very difficult situation. We all think we know what's right for somebody else, and the frustrating part is we cannot get another adult to behave the way we think they should. I've seen a situation like that at the hospital, and the best approach seemed to be to let up on the pressure on the woman patient and her family. I had to let her know that I was there for her and her loved ones and that I would be there to answer their questions, address their anxieties, and assure them that the decisions were totally up to them. And often, when we removed that pressure and stepped back, it somehow gave the woman permission to move. Nobody was going to do anything for her; she had to do it for herself. At our hospital, more often than not, we saw the patient come around and get the help she needed with her serious medical problem.
Unfortunately, that may not be true in all cases.
- Marisa Weiss, M.D. As a physician, if I hear someone describe a discharge that has a bad odor to it, I become concerned about a possible infection. That's the kind of situation that needs immediate medical attention, for example, a course of antibiotics. Sometimes, if a cancer grows to a significant size and breaks through the skin, it can give off fluid that has a bad smell to it and also causes bleeding. This is another important reason for a person who is having this problem to see her doctor at once. A person's smell may change during chemotherapy, however. You may also notice that your partner's skin, hair, and breasts smell different. That might just be a normal temporary side effect of chemotherapy that will likely go away once she has completed her treatment.
- Marc Silver I have also run across this situation. I know sometimes a husband will feel his wife doesn't want to seek treatment or continue chemotherapy because she can't stand the side effects. I second what Roz has said — you can't assume as the husband that you can make decisions for your wife, but you could tell her how concerned you are and that you hope she seeks treatment from an appropriate doctor.
- Question from Betsy FL: How do you deal with relatives who try to make you feel guilty when you take time for yourself?
- Answers - Marc Silver That's when you delegate whatever you're supposed to be doing to your husband, and you go ahead and take time for yourself. Your husband can run interference with relatives who are pressuring your in any way.
- Rosalind Kleban, L.C.S.W. I often tell families, in dealing with a major illness such as cancer, it's not a democracy, but a dictatorship run by the patient. She needs to figure out what is helpful, and the family needs to be supportive. One of the things we encourage women who are going through the breast cancer experience to do is to be good to themselves, to take time for themselves, and to delegate chores and responsibilities.
- Marisa Weiss, M.D. Amen! I say get Caller ID and avoid phone calls when you're not interested or able to talk to demanding or annoying people.
- Question from Viktor: I keep getting asked whether I've read all the material for spouses. I have, but I feel like this comment is thrown at me as a sign of not caring. How can I deal with this?
- Answers - Marc Silver I have to confess that I couldn't stand to read any material when my wife was going through treatment, and that was my method of coping. I didn't want to be overwhelmed with information. As long as you and your wife are sort of finding the right amounts of information to bring to a doctor, you don't have to feel guilty or obligated to read a hundred different books.
- Rosalind Kleban, L.C.S.W. I often encourage patients not to read at the beginning. Very often they're much too fragile and vulnerable. They're reading an awful lot and misunderstanding things and they're frightened. When you're dealing with friends or relatives telling you what to do, you need to convey to them that you and your wife are struggling to figure out what is correct for you. If you feel comfortable, say something like, "the way my friends and family can help me best is to support me." One method of coping is not right for everybody.
- Question from Kate: Is it better to talk individually to each family member about what is happening to me, or should I gather them all together and discuss it with the group?
Rosalind Kleban, L.C.S.W.
I think that's up to you. Every person knows her family, and each member is different. The way you speak to some may be different than with others. In that case, you need to do it individually. But if, historically, you do everything in groups, then do it in a group. Whichever way is comfortable for you is best. You should feel free to share as much or as little as you like. And that's a decision every woman should make for herself before she speaks to her family.
You don't want to be thrown by questions; you want to be prepared. If you choose, you certainly can answer all their questions and give details. Or if you prefer, you could explain to friends and relatives that there are a lot of things you'd rather not talk about. Just because a question is asked doesn't mean is has to be answered.
The same goes for husbands. Your friends and coworkers might ask all sorts of well-meaning but too intimate questions. You can choose to answer or choose to say that's something I don't want to talk about right now.
Editor's note: To find out more, see Breastcancer.org's section on Talking to Your Family and Friends about Breast Cancer.
- Question from Website Question: What happens when you have to tell a loved one that you have breast cancer over the phone? Is there a delicate way of saying it?
- Answers - Rosalind Kleban, L.C.S.W. It's very interesting that many of the women we're hearing from tonight are so concerned with protecting those around them. The person going through this difficult journey is the one who gets to make the decisions, and she needs to come up with a way of revealing this information that feels good to her. Whenever we mention cancer, no matter how we do it, there's always some degree of shock and dismay, and you, as the patient, need to expect that your family will not take the news well. But before the call, you need to think about how you want to put it and how much you want to say.
- Question from Simone: I know it's irrational and unfair, but I can't help feeling a little angry with my mom, who's dealing with breast cancer. I so want to help her, but she just keeps saying everything's okay, when sometimes I can see she's been crying, or is in pain or really tired. What can I do?
Rosalind Kleban, L.C.S.W.
The only thing that you can do is to assure your Mom that you're there to help her, and that you love and care for her. And maybe this is a time when she doesn't have to feel that she has to protect you, and that all energy is going to be devoted to taking care of her.
On the other hand, what your mother is doing is very strong and protective. As your mother, she has always taken care of you. She wants to continue in her caregiver role, and by telling you that she's just fine, she's also talking to herself and trying to give herself a boost. You need to let her do what she's most comfortable doing.
- Question from Sandra: I have no support system. My three daughters and sister will not talk to me about the cancer at all. There are no close friends or husband. What do I do?
- Answers - Rosalind Kleban, L.C.S.W. That's a very painful and dismaying situation. This is the time to turn to the many support groups that most communities have. While support from one's close friends and relatives is invaluable, the support, care, and love that patients can get from fellow travelers on the same journey can't be beat. There is tremendous support and fellowship in the breast cancer community, and all patients really need to take advantage of that.
- Marc Silver For both husbands and patients seeking support, the Y-ME breast cancer hotline is great, as well as www.breastcancer.org.
Marisa Weiss, M.D.
One of the fascinating things about the complex relationships between family members is they can change over time — sometimes slowly, sometimes quickly. Your family members may be unable to talk to you now, but perhaps that could change. For example, once you finish with treatment and they see that you're okay, maybe then they will open up and share concerns and provide love and support to you. What you're going through now is part of an enormously complex experience.
And you're not alone in this. For some people, those closest to them are the ones that are least supportive, and the people who may have been strangers may come forward in a powerful way to be there for you. Look for sources of strength and comfort from people who understand your situation and who share your style of connecting. There's also a discussion board on breastcancer.org for family members, and there are also many boards and chats for women with breast cancer.
- Question from Marjie: I don't know if this will make sense, but I feel like my friend is trying to take over my emotions, telling me how I should be feeling, etc. How do I get her to step back? She is a marvelous friend, but this is too much.
- Answers - Rosalind Kleban, L.C.S.W. I would tell my friend that I understand how much she cares and how hard she's trying to help, but this particular way isn't helpful. You can tell her that like most people dealing with breast cancer, you are going through a jumble of emotions. You are experiencing different things at different times and no one — friend or professional — can dictate how you should feel and when you will have those feelings.
- Marc Silver Husbands try to take over like that, too. Actually, there's a wonderful quote in my book from Roz Kleban, and what she tells guys is, "Hurry up and do nothing. Sit there and hold her hand and listen to what she has to say."
- Marisa Weiss, M.D. What's the page?
- Rosalind Kleban, L.C.S.W. Page 53, I think.
- Question from Website Question: What is, in your opinion, one of the best books on telling kids about breast cancer?
- Answers - Rosalind Kleban, L.C.S.W. One I particularly like is, When a Parent Has Cancer: A Guide to Caring for Your Children.
Kathleen McCue's book, How to Help Children Through a Parent's Serious Illness is wonderful. I also have a chapter in my book on talking to kids. There are some books for children that talk about a parent's cancer, but Kathleen McCue told me that no one book will be exactly about your family's experience. For younger kids, parents and kids might make their own book, a kind of journal, and your kids can help you write the story.
Editor's note: See Breastcancer.org's pages on Talking to Young Children and Talking to Older Children and Teens for more.
- Question from Mauryne: I think my husband is in a deep depression because this [breast cancer] is one thing he can't "fix".
- Answers - Marc Silver Many men want to fix the cancer. And they sure can't. But what men have to realize is that they can provide the love and support that no one else can for their wife. So you need to tell him not to worry about fixing it, but really be there for you at doctor's appointments and at home.
- Question from CW: My family has just about had it with me. I was diagnosed with DCIS, went thru mastectomy (no chemo needed) in May 2003. Now I am doing reconstruction, after a failed reconstruction last year. My family doesn't understand what they call my "obsession" with the subject of breast cancer because I am online often. Any advice?
- Answers - Rosalind Kleban, L.C.S.W. Everybody recovers at her own pace. You can't possibly recover from a situation and move on until that situation is completed. You can tell your family that it's understandable to be concerned about facing a surgery when a similar one has failed in the past. It makes sense to be a little bit more apprehensive this time around. Then, you can say, when everything is successfully completed, that will be the time to move on and put breast cancer behind you.
- Question from Website Question: I was diagnosed with breast cancer last July (2003). My 19-year-old daughter is very unemotional about everything. It appears most of the time like she doesn't want to distress me, which bothers me. I wonder if she is holding in her feelings about how long I might live, and isn't dealing with her fears. Who should I seek — psychologist? psychiatrist? — if anyone, for her to talk to?
- Answers - Rosalind Kleban, L.C.S.W. A psychiatrist, psychologist, or a social worker would be a good choice, if your daughter asks for help. We can't make people get therapy when we identify a need and they don't. At 19, she may be coping with this in the way that is age- appropriate for her. As Dr. Weiss said in answer to a previous question, the way people handle the illness will change over time. This young woman needs more time to figure out her response to your breast cancer.
- Marisa Weiss, M.D. It's also very possible that your own needs may change and evolve over time, but your family continues to respond to you in the same way. It may be hard for them to realize that you might want them to be more aware of your emerging needs. It's not uncommon for the person going through breast cancer and the people supporting her through it to be out of sync at some time along the way. That's where good communication can make a huge difference. I want to stress that support groups can really help give you a deeper understanding. They can help to give you the words to use so that you can start a conversation that will hopefully result in a tighter connection.
- Rosalind Kleban, L.C.S.W. A 19-year-old daughter may in some way be worried about her own future and her worries about the breast cancer being hereditary. She may have many fears but not be ready to talk about them yet. I would just want this young woman to know that there are many avenues open to her to get help. Once she becomes aware of them, she can seek them out herself without her parents.
- Question from Website Question: My girlfriend is very resistant about the idea of reconstruction. How can I get her to explore all the options?
- Answers - Rosalind Kleban, L.C.S.W. There are a percentage of patients who prefer not to have reconstruction, and that may be the correct option for them. Also, reconstruction can be pursued at any time. So if she doesn't have reconstruction and several years later feels that she wants to, the option is open to her. Right now, your girlfriend needs to be free to explore or not to explore, as she wishes.
- Marc Silver That's something husbands need to understand as well. They should not pressure their wife to have reconstruction, because it's her decision, and she's the boss.
- Question from Website Question: My husband was so nice to me when I was diagnosed with breast cancer, but once I had the surgery he changed totally. Since then, he has been very angry and hostile to me. Is this a common response? I was told I need chemo, but I don't think I could deal with his hostile attitude. So I have opted to not have chemo.
- Answers - Marc Silver I think that anger is a common reaction among men. He may be angry that he couldn't protect you from cancer. He may be upset that life isn't the way it used to be. But you should certainly make your own decisions about treatment. You may also want to seek couples therapy for you and your husband if he's willing to talk about what's troubling him.
- Rosalind Kleban, L.C.S.W. The most important thing here is for you to do what's right for your diagnosis and situation, in cooperation with your physician and available counselors.
- Question from Website Question: My best friend has Stage IV cancer, and has not had any success with chemo or radiation. The cancer keeps growing while she is being treated. She is going to apply for clinical trials. Hopefully, she will find something new that will reverse her situation. Her friends are her primary support system, and we find it difficult to maintain a hopeful, positive attitude all of the time. What is the best way for us to support her?
- Answers - Rosalind Kleban, L.C.S.W. The best approach is to let her take the lead. After having such a difficult time, it's only realistic for her to have feelings of pessimism and/or hopelessness. It is not helpful to try to wash that away with false wishes of optimism. She needs to be allowed to express her feelings, regardless of how difficult and painful they may be. While the situation sounds very difficult, you can maintain some hope that these clinical trials will provide some relief for her. It might be also helpful for this person to find a support group for patients with metastatic disease.
- Question from Website Question: Since I was diagnosed in July 2002, my husband's health has deteriorated due to stress. I'm getting stronger and healthier each day, and he seems to be falling apart at the seams. Is this common, and what can I do to help him?
- Answers - Rosalind Kleban, L.C.S.W. I think he needs to be encouraged to seek medical help for all of his difficulties, and he may also need some sort of counseling and/or support.
- Marc Silver Sometimes a change of scene can be helpful. Try a weekend trip or vacation that gives you some relief from the constant reminders of cancer. And if your husband has hobbies that he's stopped doing, encourage him to take them up again. He needs to focus some attention on himself.
- Question from JustFred: My wife was the caregiver when her mother went through breast cancer, and there are others in her family who've been through it too. She's so scared after what her mom suffered 30 years ago that she won't get tested for anything (she's 53). How can I help?
- Answers - Rosalind Kleban, L.C.S.W. There are a variety of encouraging things you can share with her. The treatment of breast cancer is very different today than years ago, and we also know a great deal more about the causes. Your wife has to work very hard at separating herself from her mother and her relatives, and know that her husband will be there to support and care for her whatever may happen. Remember — and remind her — that she may be completely well; she may be somebody in the family without hereditary breast cancer. By seeking medical attention, she can be relieved of her anxieties.
- Marc Silver One thing it's great for husbands to do is offer to go with mammograms or other medical appointments with their wives. Having someone with you can relieve some of the stress and anxiety at those times. And then take her out for lunch afterwards.
- Question from Website Question: My wife is recovering from Stage II, node positive (two nodes) breast cancer. She finished chemo and radiation and is now on tamoxifen. It has been 10 months since the diagnosis, and she is naturally fearful of a recurrence. As a husband, is there anything I can do to allay some of her fears?
- Answers - Rosalind Kleban, L.C.S.W. Let's go back to what Marc said a short time ago: hurry up and do nothing. The important thing is to sit by her, hold her hand, do fun things, and listen to her fears. You have to walk a fine line. You want to validate the feeling your wife has without validating the reality of what she's saying. You understand how frightened she is, but you can remind her of the treatment she went through and the good care she received. While most people remain fearful for quite some time, the vast majority of breast cancer patients live long, healthy lives.
- Marc Silver I can really relate to your feelings. My wife also had Stage II disease and was very worried about recurrence after her active treatment ended. Her oncologist said something that has really stayed with us. He told Marsha and me, "You can spend all your time worrying about a recurrence. If you never have a recurrence, you've wasted all that time worrying. And if you do have a recurrence, you've still wasted all that time worrying when you could have been enjoying life." That's not to say we don't worry, because we're only human. But we do try to keep his words in mind and to enjoy ourselves a little bit more than we did before cancer entered our lives.
- Question from John B: I really want to support my wife and share the same intimacy we had before. But our sex life has pretty much disappeared, and I don't know how to get it back. Any advice?
- Answers - Marc Silver I think romantic gestures are a way to try to begin connecting again. Think of the way you wooed her. Set up a date, and don't expect everything to happen at once. Sometimes just a good cuddle or hug can be a start to intimacy. See the section in my book on sex toys with information from Marisa Weiss.
- Rosalind Kleban, L.C.S.W. In the support group at our hospital, the women all talk about having a very diminished sexual interest. They're overwhelmed with the demands of treatment, worries about side effects, worries about the future, and the needs of children. Somehow sexual intimacy falls by the wayside. With the end of treatment and the entry into a new, normal life, most are looking forward to reestablishing intimacy, but slowly and gradually. So gestures of care and romance, as Marc suggests, are always welcome and helpful.
- Marisa Weiss, M.D. Without the pressure.
- Marc Silver My wife has some advice that I share in the book. If you want sex but your wife doesn't, too bad for you.
- Question from Ramona L.: Hubby keeps saying I'm a hot babe, but how can I believe him? This is an old-time breast man, and here I am with a scar where one of his favorite parts used to be. I appreciate his kindness, but I think I need honesty more.
- Answers - Marc Silver I spoke to a woman who had a double mastectomy. She was very worried her husband would no longer find her attractive. He told her, "the part that matters still works, and I'll just find something else to do with my hands." Seriously, I think that most men don't care if their wife has one or two or three breasts. They didn't marry a breast, and I hope they love the woman and not her breasts.
- Rosalind Kleban, L.C.S.W. When a patient is sure that the honest answer from her husband is that she's no longer acceptable because of breast surgery, that's really a reflection of her own feelings. Research has been done and shown that most husbands or partners don't find that their interest or marriage is disturbed by the breast surgery. Their concern is mostly for how their wives feel about it.
- Marc Silver One husband told me that after his wife's mastectomy that he told her, "I always liked the other breast anyway." Sometimes humor can diffuse tensions.
Marisa Weiss, M.D.
Some partners learn to love a particular part of your body because stimulation of that part brings you extra special pleasure. If that part of your body is no longer present or no longer gives you pleasure, it may lose importance to your partner as well. If you can discover another part of you that brings you pleasure or fun, then sharing it with your partner may successfully shift the focus from your breast over to this other place.
I have a patient who has had bilateral mastectomy without reconstruction. Her breasts had been her biggest erogenous zone and were also the focus of her partner's interest. Once they were removed, the couple had to get creative. In a serendipitous way, they happened upon a new zone of pleasure in her armpit, so they shifted their lovemaking over to that part of her body. And it worked. Sometimes you have to open your mind up to ideas that you never thought you'd have to come up with before.
- Question from Wendy Girl: My friend is trying to be Super Mom through her treatment. I keep asking her to slow down and let her friends help, but this seems to make her angry. I am worried she will run herself down too much and it could harm her treatment. Any ideas?
- Answers - Rosalind Kleban, L.C.S.W. Right now she's doing what she needs to do. She's not ready to fully accept the diagnosis and the impact it's having on her life. It reassures her to maintain her role as Super Mom. While I have seen this behavior many times, I have never seen it compromise treatment. And eventually, the patient becomes so exhausted that she generally is able to let friends and family help.
- Question from Chrissy: My sister had a mastectomy three years ago, and she seems to feel like she is the expert on everything breast cancer. She's so opinionated about my doctors, my treatment, my side effects — everything. I love her, but I can't talk to her anymore.
- Answers - Rosalind Kleban, L.C.S.W. I think you need to be clear with your sister that you understand how she's trying to be caring and supportive, but she needs to take a step back and allow you to have your own experience. You're listening to your physician, and you need to make your own decisions in consultation with him.
- Marisa Weiss, M.D. Many of us have very complicated relationships with our siblings. If your brother or sister gives you unsolicited advice, this may just be another opportunity to express their concern in their usual way. Of course, you might not find that beneficial. Caller ID is particularly helpful here. If you do get into a discussion, and it's distressing you, you have to be able to stop somebody in the midst of it. You can thank your relative for their concern but just let them know that additional advice is not what you need at this time.
- Question from Website Question: My mother isn't very active since she's been diagnosed. What can I do to help her be more active? She's in her 60s.
- Answers - Rosalind Kleban, L.C.S.W. A diagnosis of breast cancer is overwhelming and traumatic for most patients. They develop feelings of illness and vulnerability, and it's very common for them to become inactive. Your mother needs to find her own way. Try to encourage her but not pressure her. Here's another situation where support groups are very helpful to see how other people cope with the diagnosis and treatment. That's very different than getting advice from loving relatives who can't possibly fully appreciate the experience.
- Marc Silver Husbands face this situation, too. And sometimes just asking your wife to take a walk with you for 20 minutes is a wonderful way to get her active and to have some special time with her.
- Question from Sandy: My children (ages 5 and 7) can't stand to see me without my wig or some head covering. I can't stand the fact that I look frightening to them. How can I make them feel better and not feel even worse myself for looking the way I do?
- Answers - Rosalind Kleban, L.C.S.W. This is a difficult time for children. They are often frightened by anything that is just different from what they see around them. In this case, it would be helpful to wear a wig or some sort of head covering. Hair loss is one of the most difficult things for patients and family to go through, but it's temporary. So your family needs to find the easiest way to get through this during the time when you don't have hair.
Marisa Weiss, M.D.
Your kids are watching you all the time looking for cues on what this whole breast cancer experience means to you. If you are experiencing distress, they will pick it up immediately. If you are trying to conceal something like the loss of your hair, then that will cause some anxiety even if the wig or head scarf is a practical way to manage this side effect.
Sometimes the change from wig on to wig off to scarf to hat is what may be distressing. Kids kind of want you to look the same way all the time. Not knowing what you're going to look like, or how you're going to show up at their school, may be what's bothering them. Sometimes a straight-forward conversation can help ease the way. You might say to them "I'm going to wear my wig to pick you up at school, but when I'm home around the house, I might just wear nothing or a simple cap to keep my head warm." You might ask them how they feel about that, and then stop and listen. They will often give you an answer that can really help you choose your steps. Sometimes it just takes time for them to get used to the situation.
- Question from Rosen: Marc, what was your wife's reaction to your book? Did you do any research beyond your own experience?
- Answers - Marc Silver I talked to about a hundred different breast cancer couples of all stages and ages in all parts of the country, and their stories make up the spine of the book. I also talked to many excellent doctors and therapists and social workers, including Dr. Weiss and Roz Kleban, and I think their insights were helpful to many couples who read the book. My own wife said she feels a little like she's living in a fishbowl now, but she likes the old saying, "when life gives you lemons, make lemonade."
- Question from Rob: My way of dealing with my wife's breast cancer is to learn as much as I can about it. But my wife doesn't seem to want to know anything. She just wants to do whatever the doctor says, without asking any questions. How can I get her to be less passive?
- Answers - Marc Silver Different patients have different styles, and everyone copes differently. I heard of one woman who deputized her husband and sister to ask questions for her. They even went to one information-gathering appointment without her. Before a doctor's visit, you might ask your wife if she has any questions she wants to ask. You can write them down and remind her gently of those questions at the visit. I've also learned in researching my book that some patients don't want information and want to do what the doctor says, and that's how they cope with their breast cancer.
- Marisa Weiss, M.D. If you go to the doctor with your partner, you should rehearse beforehand how much each of you will say, or if your wife wants you to say anything at all. You don't want her to feel inadequate or criticized when you start prompting her to say certain things. It can feel embarrassing, or she might feel inadequate if you overstep your realm. The whole idea is to empower the woman who's dealing with breast cancer in that setting, and not to diminish her. A good conversation about your plan of action ahead of time can make this possible.
- Question from Geoff J.: My wife and I are scheduled to go to a big family event in November, and she's just been diagnosed. I want her to go, but I don't want her talking about it there. I don't think it's the place for that. But how can she just go and act social? How should we handle it?
- Answers - Rosalind Kleban, L.C.S.W. The decision about whether to talk about it or not is truly up to the patient. If your wife wants to be quiet about this and that's her decision, that's fine. If it's comforting for her to speak to others and get their support, she needs to have your support in doing that. On the other hand, encouraging her to be secretive about the diagnosis could possibly create feelings of shame and/or guilt.
- Marc Silver In my book, I describe what I've concluded as the breast cancer husband's motto which is, "Shut up and listen to your wife." My wife is a teacher, and she wasn't sure if she wanted to tell her students about her breast cancer, and she made a decision that she needed to tell them as she went through treatment. That was her decision to make, and I supported her 100 percent.
- Marisa Weiss, M.D. It is true that it's up to the woman to decide what kind of information she wants to reveal about herself in her situation. But what might be causing you some concern is that she cannot control people's reaction to the information that she has revealed. People will be talking about your situation, and that can be uncomfortable. Of course, the way you present the information can have a significant impact on how people will receive the information. They will take the cue from you. If your wife is sharing her thoughts and concerns with others and you are standing by her in support, then that most likely deliver a strong, positive message. It's important for her to be who she is, and you can find a way to give her the space to let that happen. Controlling how other people take and use this information is much, much less important.
- Marc Silver It's very hard in those first weeks after diagnosis to face that your life will be very different for the next year. That's the reality of breast cancer. For that period of time, it will run your life, and it won't be the same year you would have had. You can't deny it, but you have to let it out and let people react and move on.
- Question from Carol: My husband is afraid to show his fear of my condition and his anxiety that we don't know what the outcome will be. His frustration comes out in small fits of temper triggered by little things. I don't know how to help him get through this.
- Answers - Marc Silver Wow! I did that! It's a very hard question whether guys should reveal their feelings or whether it's better for the wife not to hear how frightened we are. Some guys cry in the car — actually a lot when they think nobody can see them. The best thing is to be open about the fact that you're there for each other and share the feelings that you think are right to share at that time.
Rosalind Kleban, L.C.S.W.
I have had many, many experiences with women who claim to want to hear the true and honest thoughts and fears of their partners. The truth is, they really don't. This is a time of tremendous vulnerability when they have extraordinary fears of their own, and it's helpful to be around a partner who appears strong and confident.
One patient told me that her husband was amazingly supportive when she went through her treatment 12 years ago, and her only annoyance was his complete assurance that she would be well.
Many years later he shared with her that he feared that she would die. She realized that she was very fortunate that she didn't know this at the time she was going through her treatment. His optimism at the time was annoying, but ultimately helpful and supportive. It's kind of a no-win situation for guys surrounding their partners.
- Marc Silver I'm very lucky to be in a support group for husbands only right now. For many men, their wife is their confidante, and they feel they can no longer confide in her when she's facing breast cancer. For me to be able to go once a month to sit with these guys and a psychologist who runs the group and talk openly is a tremendous feeling of relief. Alas, there aren't many such groups around.
- Marisa Weiss, M.D. On Breastcancer.org there is a discussion board for family and caregivers. If you do not find a discussion board that helps you, you can start one, and people from around the world can join in if they share your concerns.
- Marc Silver That's one of the messages in my book — we're not alone. I gained great comfort from knowing there's a brotherhood of breast cancer husbands.
- Question from Concord: I read the excerpts from your book in the Washington Post and thought they were fabulous. When will the book be out? Thanks.
- Answers - Marc Silver The book is out now. You can go to Amazon.com, and it should be in bookstores this week. If not, next week.