October 2000: Feelings About Breast Cancer


Ask-the-Expert Online Conference

On Wednesday, October 18, 2000, our Ask-the-Expert Online Conference was called Feelings about Breast Cancer. David Spiegel, Ph.D. and moderator Marisa Weiss, M.D. answered your questions about the emotional effects of breast cancer diagnosis and treatment.

Help with sorting out feelings of injustice?

Question from sally: I can't help feeling why me? Then I feel dreadful because I wouldn't wish this on anyone else. How do I start to sort out these feelings?
Answers - David Spiegel Well it's inevitable that people will ask themselves that question, and there is a certain injustice in anyone getting cancer and at the same time we are all mortal and something will get us sooner or later.

I am a little concerned that you feel so dreadful about asking the question because it doesn't literally mean that you would wish you illness on anyone else. It is possible to feel a sense of injustice about the cancer without thinking that anyone else deserves it more than you do. I think people get a lot of help in support groups in dealing with exactly those issues, and you are in a room with 8 other women who have exactly the same issues, who have the same illness and ask the same question, and aren't wishing it on one another. I think a good support group could help you deal with that.

Conflict in feelings between partners?

Question from new life: I am strangely calm about my situation, which seems to upset my partner. How can I help him to be accepting but still fight it with me? I don't intend giving in to it and letting it run my life.
Answers - David Spiegel What sometimes happens in couples is that each member picks up one side of their joint ambivalence and that can be a problem because it can drive a wedge between them instead of helping them deal together with the same issues. So, it sounds to me as though you are somewhat conflicted about showing any emotion related to the illness, feeling that you would just be giving in to it and collapsing if you did, and I suspect that the more constrained you are the more emotional he is. He is feeling things for both of you. So I suspect that if you let yourself be a little more emotional he might be a little less.

Don't feel whole; talk to husband?

Question from Kelari: I have had a radical mastectomy. My husband says he still loves me but I don't feel whole and find myself turning away from him. What can I do?
Answers - David Spiegel This is a hard question that many women face. I think it is important for you to realize that your own experience of unhappiness with what has happened to your body may be quite different from your husband's experience of you and your body. I suggest that you discuss in advance—a time when you and he are rested and have privacy—and that you invite him to touch your scar and spend some time together acknowledging the change in your body, and see if that doesn't help you get beyond it.
Marisa Weiss, M.D. Many of my patients assume that their experience is going to be the same as their partner's experience. That if you don't feel sexy, then how could they possibly think you are sexy or attractive. So your words of advice are very comforting.

Normal to feel overwhelmed?

Question from my own way: My feelings are totally overwhelming me. I feel so all consumed, and can't sleep. Is that normal?
Answers - David Spiegel Well it depends a lot on how recently you've been diagnosed with cancer or with a recurrence, and how long it has been going on. It is common for people in an acute crisis to feel overwhelmed and have trouble sleeping, but with help and time those feelings should resolve. However, usually feelings like this are resolved better by dealing with them head on, talking with either a professional or a close friend or someone in your family, and usually when you have been able to express them and figure out what is bothering you the most, you can work your way through them and to some extent get beyond them.
Marisa Weiss, M.D. How do women quickly learn how to speak directly on these tough issues when it was not their style in the past?
David Spiegel That's a good question. Of course, having cancer is a life-transforming experience and I think probably a good way to do it is either go to a support group, which is the norm with the same people with the same problems, or finding someone who you trust who you are close to who can be understanding of your expression of feelings. Usually people have some person or persons they feel more comfortable talking with about issues like this. And it's good to start with someone with whom you have a sense of rapport.
Marisa Weiss, M.D. These are important skills to practice with these people that you trust.

Suggestions to curb anger about disease?

Question from Ticked in TX: I'm so ANGRY about this disease, and what it's done to me and my family. I find that anger is spilling over into other areas of my life. I don't want to turn into a mean person, but I'm sure heading that way. Any suggestions?
Answers - David Spiegel I think it would be useful to reflect a bit on exactly what it is that is making you so angry. Anger is one way of coming to terms with the effect the disease has had on your life. It is a way of admitting to yourself that bad things have happened but it may also be a way of not allowing yourself to accept what the disease has done. That is, you are angry because you keep feeling the difference between the way your life ought to be and the way it is. And also, if you are not careful, the anger can isolate you from friends and family, and the more isolated you get the angrier you may get, so I would try hard to figure out what you are mad about and leave your anger there and make it a point to express appreciation to the loved ones who are trying to help you with it.

How to deal with loss of privacy?

Question from RobinGrl: I'm curious as to how others will look at me now that I've had breast cancer. I feel as if everyone KNOWS. Is this normal and how do I deal with it?
Answers - David Spiegel It's not uncommon, particularly just after you have been diagnosed, to feel very different and exposed in a certain way.
Marisa Weiss, M.D. One thing that many of my patients have described is a loss of their privacy. They believe that wearing a wig is a sign to everyone else that they have a serious illness, and many of my patients feel embarrassed, too, by feeling so exposed and vulnerable.
David Spiegel That is a good point. You are sort of trying on a new identity. That is another advantage of a support group. The thing that makes you weird and different to the outside world is your ticket to the group. You get to try on a new identity as a person who has cancer in a setting where that is the norm, not the exception. Hopefully it is a kind of transition period. If you have been recently diagnosed, you will get beyond it. One thing one of my patients said, "You will find this hard to believe, but whole days go by when I forget I have cancer." It takes a while to get there, but it does happen.
Marisa Weiss, M.D. How might this woman who wrote in protect her privacy from someone who might unintentionally invade it?
David Spiegel You have to be willing to accept the fact that people will learn you have cancer. Some research done at Stanford with people who have more obvious disabilities like being in a wheelchair found that the most useful thing they did was work the word into the first sentence so that the person they were talking with, and the person being talked about knew that they both knew what each other was thinking. Sometimes you can diffuse it a bit if you make a comment yourself about having a wig or getting out of chemotherapy. Like it's not such a big deal that you can't talk about it. That sometimes puts people at their ease and you can talk about something else.

Find faith in breast cancer experience?

Question from barb: On diagnosis my friend turned to prayer which really angered her partner. I think it is nice to have someone to put your faith in (I know it is not a cure, but it helps to put perspective on things I think). How do I explain to him that she NEEDS to have faith to help her?
Answers - David Spiegel I think the issue is one really of mutual respect. Judge not that you be not judged. And I would not begrudge someone who is facing a life threatening situation to see if their faith provides comfort for them. You don't have to agree to share the same faith but it is important to be respectful of one another's approaches to very difficult problems.
Marisa Weiss, M.D. No one likes to be told what to do or who to believe in. Respecting the autonomy and the strength of the person who is dealing with a breast cancer is very, very important. And I think that's where the faith should start.

Does spirituality help in coping with cancer?

Question from Leigh W: Does spirituality/faith/religion, or whatever you want to call it, help people deal with cancer? Any research on that, or your own experience?
Answers - David Spiegel I think I haven't seen many well-conducted studies that prove the point. It is pretty clear that people who feel socially supported do better. That people who are not hopeless, helpless and despairing do better, and to the extent that faith provides you support, I would think it would be helpful. I don't think faith and religion are medical interventions. They are personal choices people make and they should be respected for that alone, rather than evidence that they add to chemotherapy. Some people find the process of prayer itself comforting and relaxing. They enter into some kind of an altered state or find a way of containing their fears and anxiety by working their concerns into a period of prayer. I think like many other things, support groups, it's helpful to have a ceremony that helps to contain your distress because you deal with the distress during that period and can turn it off for awhile and concentrate on something else.

Shame and guilt associated with cancer?

Question from Lee L: I'm first generation Chinese American. In our family, people believe that cancer happens for some reason, so I feel a lot of shame and guilt that I must have done something terrible to cause the cancer. I lie awake at night trying to figure out what I did wrong. Is this normal?
Answers - David Spiegel It's common but it's not normal and I think what it comes from is this: Many people would rather feel guilty than helpless. The price that you pay for avoiding the sense that life dealt you a bad hand is that you feel guilty because you are nurturing the fantasy that you had control over something that you didn't. We don't know why people get cancer. Unless you were a smoker for 40 years and got lung cancer, the odds are you didn't do anything to get cancer. Perhaps with some help you can face that sense of helplessness that you were struck with a disease that you had no control over. There may be some cultures where that's the case, and I would be rather forthright if someone was laying that on me. I would respectfully disagree with them. I hadn't particularly heard that in Chinese culture people are made to feel guilty about having cancer, so I'm not sure how much is cultural and how much specific to people around you. For others who are reading this, sometimes when people get depressed they tend to blame themselves and feel guilty about things for which they aren't responsible. If you can't pull yourself out of it or accepting people leaving you with this, then you may be depressed and need some help dealing with this.
Marisa Weiss, M.D. If family gatherings have become oppressive to you, you may want to avoid going to all of them, or bring someone with you that helps you feel more supported.
David Spiegel You can do a few things. That is a good idea, Dr. Weiss. Either you can take them on or have somebody who cares about you sit down with people and tell them that it is making you feel worse. You don't have to stick around for it. If people start doing this to you and you can't change what they do, you can change what you do. Pretty soon, they will get the message that if they want to talk to you, they won't talk about that.
Marisa Weiss, M.D. If it is you, here, that is your own worst enemy, then take Dr. Spiegel's advice and apply it to yourself in terms of how you listen to your own inner voice.

What to do about feelings of jealousy?

Question from gloomy: Sometimes I feel very jealous of people my age (37) who are healthy and seem to have a wonderful life. Their kids are carefree and their marriages seem perfect. I never want to go to parties or the kids' school events anymore, so I don't have to be reminded of everything I've lost that other people still have. My family is losing patience with me.
Answers - David Spiegel I would say that I can understand the feeling of jealousy, but again it sounds to me like an unwillingness to accept what has happened. By nurturing your jealousy, you could change positions with these people. What you are really doing is punishing yourself and your family, and depriving yourself of the joy and pleasure of their company in a way that even the cancer isn't doing. So I would say don't give up any more in your life than the cancer forces you to.

Dealing with husband's loss of desire?

Question from susan: How can we cope with our husbands feeling we're not sexy anymore?
Answers - David Spiegel First of all, as Dr. Weiss said earlier, is that a fact or an assumption? That is, you may feel damaged or unsexy, that doesn't necessarily mean your husband does. First of all find a way to figure out if it is your hang-up or his. I think what we tend to do especially early on in a crisis is to think of it in all or none terms. Either I am healthy or I'm dying. Either I'm sexy or I'm ugly. The realities are somewhere in the middle. Sure you would wish not to have had a mastectomy or radiation burns or whatever it is, but there is a lot more that goes into feeling sexy than that one piece of your body. Part of it might be finding an intimate time to explore with your husband, but you will have to be willing to do it. At some time when you are not going to be sexually engaged, talk it over with your partner and tell him what would make you feel good.
Marisa Weiss, M.D. Your partner is probably waiting to read your cues on these very delicate and intimate issues, and when you don't talk about things outright, there is much more room for misunderstanding.

Help husband deal with mastectomy?

Question from Carolina: I had a mastectomy but decided to wait on reconstruction until after all the chemo and radiation were over. Now, I feel better and want to be close with my husband but he won't look at me and is only willing to be with me if he lies behind me. That really hurts my feelings but he says it's a normal reaction for a man to have.
Answers - David Spiegel I can understand how that would be hurtful. I guess the question is how can you help him. It is understandable that it would be upsetting to a man to see a mastectomy in his wife, but sooner or later he has to get beyond it. Again I would say at a time when you are not trying to be intimate you might say to him that you would feel more comfortable sexually if he would look at you and if he and you could do that together it would help get beyond it. You have dealt with it, so maybe you can think through what you did and see if you can help him become half as smart as you are.
Marisa Weiss, M.D. This is not going to happen in one big step. It would probably take quite a number of steps over days and nights. You might want to start out in bed partially clothed facing each other and hopefully get to the point you can be face to face and as naked as you want to be. Try wearing something that you feel sexy in. That might help him get beyond the first step.

Natural to be despondent, confrontational, suicidal?

Question from nightshade7: Is it natural for someone with cancer to become despondent, confrontational and then in some cases suicidal?
Answers - David Spiegel I would say no. Sure there are moments of despondency and despair with anyone, but someone who is suicidal is not reacting normally but is probably depressed and needs treatment. For that, there is help with a mental health professional, usually a psychiatrist. There is a substantial minority of cancer patients who are depressed. There are treatments--psychotherapies and pharmacotherapies-- that can be very helpful.
Marisa Weiss, M.D. If you are feeling suicidal, you really must seek professional help.
David Spiegel Your oncologist or your primary care doctor can refer you to a psychiatrist. The American Psychiatric Association at 1400 K Street in Washington, DC can make referrals. The other thing is if you are near a medical school, you can call the Dept. of Psychiatry and you could get treated. If it is a real emergency and you think you will harm yourself, get yourself to the nearest hospital emergency room.

Cancer-free guilty feelings normal?

Question from Rogue: I feel guilty that I am cancer-free when my friends are sick. Is that normal?
Answers - David Spiegel It's not uncommon to nurture some sense of guilt. Usually the other side of that coin is there is a part of you that is relieved that you are cancer-free and they are not. That is normal too. People will have that sense and it is part of being human. You wouldn't wish it on them but you are lucky. I would not be preoccupied with it, but for whatever reason you are lucky and there are times where you are aware of that.

Where to find a good support group?

Question from job: How do you find a good support group?
Answers - David Spiegel There are a number of associations like Y-ME and Cancervive, The Wellness Community, Living Beyond Breast Cancer, US2 (for men with prostate cancer) that can make referrals. Many oncology treatment centers also have support groups or have staff who can recommend a good local support group. I would start out either with one of those community agencies that provide emotional support for cancer patients, or your oncology program, a social worker, nurse or your doctor who may know of a group in the area. We have a cancer supportive care program that is now spreading to other hospitals. There is a community breast health project in Palo Alto. The other thing is to ask another patient who has been there for a while, and usually you can get into the local network.

What's responsible for loss of sex drive?

Question from molly284: I love my husband, but since my lumpectomy, chemo, tamox (and Paxil for the hot flashes) and rads, I don't seem to have any sexual desire. My husband feels that I'm rejecting him even though I explain that my body is changing. (it's only been a year since everything began). So, what I'm asking is, is the tamox responsible for my lack of sex drive or is it psychological or is it a combination of everything that's happened?
Answers - David Spiegel It is undoubtedly in part physiological. Many patients going through these treatments have artificially induced menopause. And because hormone levels are deliberately kept low, their sexual drive may in fact be reduced. In a way, though, this is the converse of the problem some other women were talking about, which was having trouble getting their husbands interested in them. It is good that he is interested in you and he is feeling some frustration if you are not up to it. It is a balance of listening to your body and doing what you feel like doing. It is also your reaction to the illness rather than the physiological change. You acknowledge your desire for your husband but you aren't pushed into something you don't want to do.

Editor's Note: Paxil (chemical name: paroxetine) is known to reduce the effectiveness of tamoxifen. If you are taking tamoxifen, talk to your doctor about alternatives to Paxil. For more information, please visit the Breastcancer.org Tamoxifen page.
Marisa Weiss, M.D. All of the changes that you experience with breast cancer came on quite abruptly, but the solution for returning to a new sense of normal will happen much more gradually, and with a lot more work. So it will take a lot of patience, listening, and talking in a way with your husband that you may not have ever talked before.

Selfish to deal with disease alone?

Question from Rhonda B: I want to deal with this sickness by myself first, I haven't told anyone, is that selfish?
Answers - David Spiegel Everybody has to pace it their own way. You may be an exceptionally private person, but the people who love and care about you have their own feelings to deal with too, and you should recognize that you may be making it harder for them by not discussing it.
Marisa Weiss, M.D. The people who are about you need to be able to feel that they can help you in some significant way, and excluding them from this important and meaningful opportunity can be very hurtful, and they may feel rejected. So it's important to try to find a balance between feeling in control of your own situation and also letting other people in who are in your inner circle.

Positive state of mind affect recurrence?

Question from kt9192: How much of a role do you believe state of mind plays in dealing and moving through the cancer experience, and do you think a really positive state of mind is enough to ward off the possibility of recurrence?
Answers - David Spiegel I wish I did but I don't. There is no magic talisman. The problem with that point of view is that it can lead you to avoid dealing with natural reactions to the illness and also to blaming yourself if the disease progresses. I think there is a difference between being rigidly upbeat, which my patients call the prison of positive thinking, and being realistically optimistic--seeing what lies ahead of you and what is happening but finding the best life you can with this disease. It is more a matter of being optimistic about life but not giving yourself false hope, and also not giving yourself false despair.
Marisa Weiss, M.D. I think it is important to accept that recovery doesn't mean that you feel better every day after you finish your breast cancer experience. That you will have some good days, some okay days, and some days that will really stink. And that's normal. I think the main thing is to try to head in a direction that feels right to you, and acknowledging a lot of the complicated feelings that you normally should have.

Support groups for husbands?

Question from susan: But shouldn't husbands go to support groups, too?
Answers - David Spiegel Yes and there are a few groups for husbands. They can be very helpful. One husband said this is a place where I come to feel better about feeling bad. And many men just sort of don't know how to handle it. They don't know what to do or where to go to talk about it. For them, one of the problems is that cancer seems to trump everything else. Husbands have a whole host of problems all by themselves too and I think it can be helpful if they can find a good group with other spouses.
Marisa Weiss, M.D. Dr. Spiegel, do you have any helpful tips on dealing with some of the stress that these feelings create in many of these women?
David Spiegel I think one way to make stress more manageable is first identify what is causing the stress, so rather than keeping things vague or running from it, ask yourself what it is. Make it a specific fear about something. And then try and find something you can do about some aspect of it, because one component of stress is the existence of the stressor--the cancer or angry boss or something else. The other is the sense of helplessness to not be able to do anything about it. If you can feel a way to address it, it will make you less stressed.
Marisa Weiss, M.D. When women don't feel like themselves anymore, it is hard for them to assert themselves and sort of "be yourself". So another practical piece of advice would be to try to find those times, places or people to be with in which you can feel like yourself, and once you get a good glimpse of yourself again feeling like yourself or looking like yourself, that can be very reassuring. It will probably help you feel less helpless.
David Spiegel Many people find that learning self-hypnosis can be a useful way of managing stress. Hypnosis is a form of highly focused attention. Like getting so caught up in a good movie or novel that you forget that you are reading a novel or watching a movie. You can disassociate the physical stress response from dealing with the issue. Some people might want to find a good psychologist or psychiatrist that has expertise in hypnosis.
Marisa Weiss, M.D. Many of the techniques like hypnosis, meditation, etc., involve skills that you can learn and then use on your own. You can look at them as your tool kit to help you with difficult moments.

What do the emotional stages include?

Question from fighter: How many emotional stages are there in dealing with this? Anger? Guilt? What else?
Answers - David Spiegel There's no sort of lockstep path down which people invariably tread, but usually there is initially disbelief and tremendous fear and then some people get angry and some get sad. There are other emotions as well but I think there is no sort of one course that everyone goes through. One thing to keep in mind is that we don't control emotions. They happen to us. Many people think that if they are controlling their emotions about the cancer, they are controlling the cancer and that's not true.
Marisa Weiss, M.D. What do women do when their emotions get really out of control? Like when anger turns to rage?
David Spiegel I think it depends. It is not a good thing and I think you can inflict lots of wear and tear on family and friends if you lose it too much. I have seen a lot of patients who say they are angry and look sad. That is one emotion that can be dangerous. Get help if you can't modulate your rage about the disease.

Is there therapy in laughter?

Question from Megan's Mom: You know the old saying about laughter being the best medicine? Any thoughts about how mental attitude affects the physical state, or even the potential for feeling better? Should I be watching more sitcoms?
Answers - David Spiegel Of course that assumes you find sitcoms funny! I actually think that laughter can be therapeutic in part because it is a good feeling, but also because the essence of the joke is coming to a new understanding of a situation heading in a different direction. A group of women in my support group were talking about preparing for their remains to be buried so their families wouldn't have to do it. One called to get information about a beautiful place overlooking the ocean, and when she was told the price she said she was representing a group. The facility replied that they don't give group discounts. The whole group had a good laugh about it and sometimes laughter can make the unbearable bearable. Is laughing going to change the course of the disease? There is no evidence that that happens but if it makes you feel happy, go for it.

How to ask husband for space?

Question from coping: I am dealing with this and I want my husband to just give me some space, he won't leave me alone! What do I do?
Answers - David Spiegel Some of it may be just communication. He may either be anxious or feel guilty if he leaves you to your own devices. Maybe in a nice way you can let him know that you appreciate his help but he must have other things to do. I'd be very specific about what you want. If you say "Leave me alone," you will insult him. If you say, "I'd like an hour to read," or whatever, you can get some time to yourself. Try to make it specific, concrete, and appreciative of the fact that he wants to be there and help you.
Marisa Weiss, M.D. Gentleness and good listening skills will make an enormous difference in any of these difficult and sensitive interactions.
David Spiegel One thing that cancer should do is help you appreciate what you've got, and that means letting people know when they are doing things to help you. They appreciate it and it means a lot to them.

Does anger or sadness cause cancer?

Question from kt9192: I've heard that the anger and/or the sadness come before the cancer--that the cancer is actually a reaction to inner anger. What do you think?
Answers - David Spiegel In a word--nonsense. There is absolutely no evidence that anger causes cancer. And there is no evidence that emotions turned inward give you cancer. I think it is cruel for people to be blamed or blame themselves for giving themselves cancer when that is not what happens. We get cancer because we are biological beings and are vulnerable to that and a lot of other illnesses.
Marisa Weiss, M.D. The cancer itself causes so much suffering that our natural inclination to blame ourselves can add to that suffering. Try to avoid that big pitfall.

Does anxiety lessen throughout experience?

Question from Retired: Waiting for results of tests after check-ups is awful. I feel that I can only breathe freely between check-ups. Are these feelings ever going to end? Or is having a cure the only way to get over the anxiety?
Answers - David Spiegel I would say that anxiety goes with the territory to a certain extent. I think actually often some of the worst times are sort of waiting for the results of tests, and if there are ways to get preliminary information sooner, than do it. One other thing to do is in your mind formulate a plan about what you will do if the results turn out either way. If they turn out good, go out and have a bottle of champagne and if they are not good, you will set up an appointment the next day with your oncologist.
Marisa Weiss, M.D. Uncertainty stinks. As soon as you have some plan of action, it feels so much better.

Lack of emotion normal at diagnosis?

Question from dolden: I found out I have breast cancer, small lump, and we caught it early, but I don't feel anything. I'm numb. Is that normal? Am I in shock?
Answers - David Spiegel First of all, good, I am glad that you got it early. It may be that you are a bit in shock and it's not uncommon that people initially go into coping mode and can't quite believe it, and the feelings catch up after the diagnosis and treatment are over. Sometimes it is after that is all done that people start to have emotion about it and that's okay. Sometimes it takes people by surprise that they start to feel it later.
Marisa Weiss, M.D. The timing can sometimes be difficult because at the very time that you are hoping to get back to normal may in fact be the time that some of these unexpected feelings hit. These are normal feelings. A support group is a very good place to help work them through.

Family's reaction to cancer unusual?

Question from Diana: My husband and adult kids act as though nothing has happened, that I'm cured and I should get back to things the way I used to. For me, everything has changed. Am I expecting too much from my family?
Answers - David Spiegel First of all, make sure that what is going on is not just a misunderstanding. There are some families who just focus on their own needs more than the person who has cancer, and view the cancer as a nuisance that interferes with clean laundry and meals. The only way to set limits with others is to get your own limits. Things have changed and that's the way it is. Just be clear about it and don't feel guilty.
Marisa Weiss, M.D. It is very important for kids to fold their own laundry and figure out how to take care of themselves, and your illness may be a jolt in that direction.
David Spiegel I think the other thing is giving them the benefit of the doubt. Maybe they don't know what to do. Sit down and talk to them and tell them that cancer affects everyone, and tell them that you would appreciate their help. Become a good manager if you can't be a good doer anymore.

More depressed at end of treatment normal?

Question from job: Is it normal to become more depressed as you approach the end of your treatment. I feel much more afraid at this point.
Answers - David Spiegel Surprisingly, it is. The worst time is when you are told you have cancer, but the second worst is when active treatment ends. One of my patients found herself walking around in tears at the end of therapy. You feel more vulnerable when you are no longer doing anything active to fight the disease. You are sitting around waiting to see if it comes back. You are also no longer surrounded by other cancer patients, techs, nurses and doctors who understand what it is like to go through it. You are thrust back in the normal world and feel kind of isolated.
Marisa Weiss, M.D. www.breastcancer.org offers a lot of information about how to move on after your treatment is over.

Helplessness for family member overwhelming?

Question from janey: I found it really difficult to be watching a family member with the disease. It is such an awful sense of helplessness. I know all I can do is be there for them, listen, help around the house, etc. I just wish there was more I could do.
Answers - David Spiegel Yes there is a sense of helplessness but there might be more you can do--just ask them. Let them know how much you care about them and that you feel it when they are suffering. Sharing those feelings is doing something. Talking is an intervention.
Marisa Weiss, M.D. Being there for them is so therapeutic.

Necessary to be strong for mom?

Question from Vanessa783: I cry all the time 'cause my mom has cancer and she won't cry at all, so it makes it real hard. Am I supposed to be strong in front of her? I don't know what to do.
Answers - David Spiegel I'd say be true to yourself. Your mom has her way of dealing with it and you have yours. I don't know why your mom is doing it but even if she is in an emotional straightjacket, you don't have to be.

Normal to cry a lot during treatment?

Question from lola: I cry at every chemo session, the nurses and doctors just look at me. I just want to cry and cry, is that normal? I gush like a river.
Answers - David Spiegel Nobody ever died from terminal crying. It is not a terrible thing. I would worry if you find yourself sad most of the time, helpless or worthless. Maybe you are depressed and would benefit from treatment. On the other hand some people just want to vent some feelings, and if otherwise you are not depressed, then maybe it is okay. It may be more of a problem for them than it is for you.

Support group not helping?

Question from Trudy Z: I've been going to a support group at my hospital for about 8 months now, but it usually just makes me feel worse, not better. Would it make more sense to see a psychologist one-on-one?
Answers - David Spiegel It might, but of course the question is why does it make you feel worse? The first thing I would do if I were you is, if you are committed to have gone for 8 months, take that up with the group. Sometimes people constrain themselves and don't get what they need from the group, and you have as much right as anyone else. I would see if you can change things. If you can, good. If you can't then maybe you want to see a psychologist or find another group.

Resentment toward illness, home?

Question from Homebody: Ever since the diagnosis and surgery--about one year ago--my whole house just seems like enemy territory. The kitchen I need to avoid cause I've gained weight. The bedroom's bad cause I have trouble sleeping and my husband and I don't have relations anymore. I really resent the way this illness has taken over my home.
Answers - David Spiegel It sounds like the home has come to symbolize some problems with your body image and sexuality and that there is little that you find you can enjoy. The things that brought you comfort and pleasure now seem like a threat. I think somehow you need to find your way out of it. Focusing less on weight, which can be a problem with women on hormonal treatments, which tends to lead them to put on weight. If you can, you need to find things that you can enjoy, and this may involve negotiating with your husband in the ways that we have talked about before. Or it may be that you can't enjoy anything and are somewhat depressed and need treatment for depression.
Marisa Weiss, M.D. As you manage it, try to find some safe places in your home where you don't feel uncomfortable, and then try to bring back the places in your home that have felt threatening to you. I have a patient that ended up sleeping in the living room for a few weeks because her bedroom was filled with fears that kept her up at night. Slowly she was able to go back into her bedroom. Moving furniture around and changing the decoration helped somewhat.

Worry about recurrence after radiation?

Question from Diana: I have just completed 33 radiation treatments...I worry about a recurrence. I especially am concerned about a sharp pain in my lower right ovary area. I have also found a brown spot on my left hand about the size of a large nail head. Should I worry about these things or not?
Answers - Marisa Weiss, M.D. These specific medical concerns could be readily checked out by your doctor and deserve prompt attention, mainly to reassure you.
David Spiegel I agree with that of course. But you don't have a choice. You are worrying about it, so you might as well act on it. Don't just sit with it.

Panic about family history of cancer?

Question from cc498: I have a family history of breast cancer (as well as bowel, liver). I go through stages of not thinking about it--then all of a sudden I get a feeling of panic. How can I ensure that I don't pass my panic onto my kids?
Answers - David Spiegel There are 2 issues here. One is that there are now possibilities for doing genetic testing, so you may want to have yourself tested if family members are willing as well. One option is talking to a genetic counselor about a genetic risk factor. It sounds like you go from being over- to under-modulated. It's possible your kids think about this, depending on their ages. Maybe when you are feeling more in the middle you can discuss it with them. See if they have anything they want to talk about with you.

Subconscious fears disrupt sleep?

Question from molly284: There are times I wake up sweating with fear (not hot flashes) because my dreams are so vivid that IT came back. I can't really talk to my husband about it because he thinks I should just get over it and move on. Will this fear ever lessen or will it continually gnaw at my subconscious?
Answers - David Spiegel I don't know, but it's not completely irrational that you have the fear. One problem is that you have the fear and the second problem is that your husband isn't accepting that, so you wind up not only afraid but alone and afraid. So I would say to him, look, I am having these nightmares and you can help me by giving me a hug and comforting me.

Does fear of illness go away?

Question from Angela99T: Once you get sick, do you ever get over being sick? I mean, am I going to be afraid all the time now?
Answers - David Spiegel No. I think it is much more acute in the first period. It doesn't go away, but you get used to it and you have experience dealing with it. People learn this in support groups. You go from feeling completely healthy to feeling completely sick and eventually you wind up in the middle.
Marisa Weiss, M.D. www.breastcancer.org offers a lot of information and tools to help women deal with the fear and also the Y-ME organization, www.y-me.org, who is co-sponsoring this event, has a terrific national help line to help women who are struggling with these feelings.

Does group interaction affect recovery?

Question from janice: Could you elaborate on the most beneficial areas of group interaction that affect recovery/recurrence in your most recent studies?
Answers - David Spiegel We are not certain. We are actually doing active research on that. I think some of the most critical pieces are creating a new network of social support so you feel less alone. Expressing emotion, dealing with feelings that are otherwise hard to deal with, taking fears head on. Talking about fears, dying, death or disease recurrence and improving communication with family and physicians and some of the self-management skills that we've talked about. I think those are important components of good group support.
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