Ask-the-Expert Online Conference
The Ask-the-Expert Online Conference called Dealing With Breast Cancer Fears featured Rosalind Kleban, L.C.S.W. and Marisa Weiss, M.D. answering your questions about aspects of breast cancer that cause concern.
Editor's Note: This conference took place in June 2002.
Questions from this conference
- Question from Soccer Mom: I just got diagnosed with breast cancer and I'm so worried that I'll lose my breast and my husband will never be attracted to me again.
- Answers - Rosalind Kleban, L.C.S.W. It's sad and painful to think that on top of the trauma and terror that people experience with a new diagnosis of breast cancer there is added to it the worry of losing a spouse. In my experience with this I've never really seen a marriage disturbed by breast cancer, including when a woman loses a breast. It will only disturb a marriage that was already in trouble. Solid marriages are often strengthened during a crisis. A marriage that doesn't stand up to this crisis will clearly come apart under any crisis, not just breast cancer. It is the goal to see us as more than a breast and more than a body part. We are all whole people. To lose a body part is sad and traumatic, but doesn't change the basic character and why people love you.
- Marisa Weiss, M.D. While you may see yourself differently after the loss of a breast, don't assume that your partner feels the same way. It's really true that your experience is not necessarily your partner's experience, and it is important to share your concerns and be open to hearing how your partner may be feeling going through this with you. Usually the loss to you feels much greater than the loss to your partner.
- Rosalind Kleban, L.C.S.W. To add to that, they have done research along those lines that reveals that fear is the woman's representation of what is happening and does not represent how her partner feels. What is recommended in those situations is open communication, and we always promote and encourage couples to resume an active sex life as soon as it is physically possible to get over these difficult painful feelings. We used to almost insist that the partners look at the surgical site before leaving the hospital so that, in a caring atmosphere, you can get over that first, very difficult step.
- Marisa Weiss, M.D. Often, just upon the fear of a breast cancer diagnosis, many people's sex lives comes to a screeching halt. This lack of sexual activity and intimacy in a relationship can, in itself, be a difficult transition to make. Concerns about self-image and the effects of fear, uncertainty, discomfort, embarrassment, anger, sensitivity...you have a very potent combination of feelings that can get in the way of feeling sexy and having any interest in sex.
- Rosalind Kleban, L.C.S.W. Also, part of the problem is that if a woman assumes—without communicating—that her partner will be turned off by the surgery, she will be less eager to initiate a relationship. And you have the man not initiating it because he is fearful of hurting someone who has just had surgery. His reticence is often misinterpreted by the woman as lack of interest, so everyone is misinterpreting everyone's behavior. So it is important to talk about this. I think a woman going through this experience is touched and prodded and not much intimate touching is happening, which is important at this point in time.
- Marisa Weiss, M.D. How do you help a woman develop talking skills on this difficult topic if she's never had to do this before or feels unable to initiate a conversation and find the right words and the right time to use them?
- Rosalind Kleban, L.C.S.W. This is the kind of thing that is dealt with in a support group where women can help each other. I don't think there is any right way. Put a group of women together and they are able to come up with easier ways to deal with things. At the Breast Center where I work we have also begun a class on sexuality where all of the issues are brought out and discussed—all of the possible ramifications of sexuality, of surgery and chemotherapy. And we establish an atmosphere of calm that encourages people to do this at home.
- Marisa Weiss, M.D. Another thing that is so important to consider when talking about these issues is to not be judgmental of other people and their feelings. I know that support groups work so much better when people can hear each other without judging each other.
- Rosalind Kleban, L.C.S.W. In my experience with support groups everybody in the group is under stress and anxiety. People are very kind to each other, understanding those stress levels and not wanting to add to it, so they are non-judgmental, like a secret sisterhood. They feel more at ease discussing it with each other than discussing it with doctors.
- Marisa Weiss, M.D. I agree. When finding the words and developing the ability to listen to your partner you have to be careful not to judge what your partner is saying too quickly. These are such sensitive topics that it is easy to react quickly to what the other is saying. The hope is that you can create the space within your relationship to hear and feel each other out.
- Question from Cathy-2: It's been six years since my diagnosis of breast cancer and my husband just now seems to be dealing with post-traumatic stress disorder, especially after the death of his mother. Now, he is afraid of losing me to breast cancer. We've been married 27 years.
- Answers - Rosalind Kleban, L.C.S.W. What I think this writer is experiencing with her husband is not uncommon. When people experience a trauma—as in this case, the loss of his mother—that usually brings up all of the past, unresolved conflicts and fears. It may be that six years ago he behaved like the brave, strong partner, but with the death of his mother it's bringing back the feelings from six years ago that he probably didn't allow himself to express. So, what is really happening is sort of normal—natural, somewhat delayed, but not all that surprising. With time and communication this will only serve to bring them closer, but he needs to express what he has been struggling with these past few years that he has been unable to verbalize until this new trauma in his life.
- Question from Carole: I'm feeling overwhelmed with information, much of it conflicting. I get recommendations from my doctors, but ultimately it's up to me what combination of chemo/radiation I go with. How can I stop worrying about making the best choices?
Rosalind Kleban, L.C.S.W.
That's a difficult point to be at. The trick is, after doing research, to choose a physician that you feel confident in and to go with the judgment of this person that you have selected to take care of you. As much as we like to be a partner in our care, we don't have time to come up to the learning curve. You have to develop trust in a physician to make decisions for you. If you see a lot of doctors, most of them will come up with the same thing.
I think it's helpful to remember that when you're given a choice by a reputable physician, then clearly whatever you choose is going to be the right choice; there is not going to be a wrong answer. The other part is that you need to confine yourself to the information you get from your physician—the one you have chosen—and not to be swayed and disturbed by the information you get from everybody on your block. Unfortunately, when it comes to illness, people feel too ready to give others advice. Unsolicited, they will tell you what their neighbor or aunt did. You need to filter that stuff out and deal with the reputable people that you have selected who know your particular situation. These decisions are based on who you are and the ramifications of your diagnosis. No matter how many people did it 'X' way, you are different and the way you are diagnosed is different, and you need to have the confidence in the person that you have selected.
Marisa Weiss, M.D.
It's normal to feel very uncomfortable making big decisions based on unfamiliar information, particularly when you feel that your life is at stake. These decisions do not need to be rushed. What is very interesting is how important it is to process the information you collect over time and talk to your family and friends about the information and recommendations given to you by your doctor. Through talking things out you can usually figure out the best direction for you. The idea is that you eventually make the best decision that you feel most comfortable with.
Making sense of complicated medical information on breast cancer, so that you can make the best decisions for your life, is actually the mission of breastcancer.org. Also, usually breast cancer is treated by several different physicians as part of a team approach. You may feel a little anxiety dealing with fragmented care. It's the communication between you and your doctors (and between each of your doctors) that can bring you the best from each person on the team in a coordinated fashion. And if you don't feel confident and trusting about a doctor on your team, perhaps it would be helpful to get a second opinion or find another doctor who can fulfill that important role.
- Question from freebird: Can you cause your cancer to come back just by being afraid that it will?
Rosalind Kleban, L.C.S.W.
I am glad that this question was raised, because I'm sure that is on the mind of the majority of people. It is a very popular notion in our culture today that if you have a positive attitude you can get rid of your cancer, or that you never get it or that it doesn't return. If you think about it, that notion is truly an oxymoron. An oxymoron means two things that don't go together—like "jumbo shrimp." The reason I call it that is to think about telling somebody what is the worst news of his or her lifetime and then ask them to be positive just doesn't make sense. Having bad feelings and down days is neither good nor bad—it's just normal. The only people we ask to have a positive attitude at all times are people who have had cancer. I can be miserable all day long and nobody is going to reprimand me about being positive. You only 'have' to be positive if you have cancer.
Having that philosophy or notion or belief is like living in tyranny. What it does to you as a patient is that on days that you are down or depressed or sad or anxious or worried—which is normal—you will feel even worse because you have accepted the notion that those are bad feelings. You need to work hard to get rid of that notion. It is not fair. It is putting a burden on the patient, while it serves many good purposes for the people who are saying it. If you are going to be happy and positive all of the time, then I don't have to worry about you. It also leads me to believe that if I am positive I will be fine. The philosophy serves everyone except the patient.
You need to know that people will tell you that you need to be positive. You need to be prepared in how to handle that comment coming at you, and that is something that you want to do in a way that is comfortable for you. What I think works is that when someone tells you to be positive, suggest they walk in your shoes first. And inform them that when people speak to you that way, it's really not helpful. You need to protect yourself as much as possible from that theory because it is burdensome and hurtful. A bad attitude will cause only one thing and that is a bad day. The best reason for having a good attitude is that on that day you will enjoy yourself. But neither the good nor the bad attitude will affect the illness. It will affect the quality of the day that you are having.
Your fear is just the natural outcome of having this diagnosis. It will not cause the cancer to come back. I work with a thousand women a year and I have never met one that doesn't suffer from fear, either enormous or very enormous. It's normal. Not bad, just normal. It will have no impact on the course of the cancer.
- Question from Ann-7: I am always afraid. I had two stage-1 cancers, negative nodes and the doctor told me I will be here when I am 80. But I am always afraid. There are no guarantees. Everything makes me nervous. How do I get rid of this fear?
- Answers - Rosalind Kleban, L.C.S.W. Everybody has fear with this diagnosis, but having it twice makes emotional recovery more difficult. It does happen and the best answer is, unfortunately, time. It will probably take longer than a person who had one incident. Whatever optimism you had to recover from the first, your defenses are ragged going through it a second time. When I have met people who have had two local breast cancers I will tell them about a man who is a volunteer in the hospital who has had several serious cancers and is alive, well, and working full-time at the age of 80. Apparently his body produces cancer and his body is also able to fight it off and be well. Breast cancer, particularly Phase I, is a cancer that physicians can treat successfully. It is expected that you will be around until you are an old lady. Believing that is something else; with time and distance, that will just happen.
Marisa Weiss, M.D.
It is normal to be afraid of something that is threatening to you. One of the things that you can work on and modify is the anxiety that often goes along with that fear. If you are experiencing regular anxiety that is just getting in your way of everything that used to be pleasurable or even ordinary, then it is important for you to seek out help from someone who has expertise in your area. There are many things that can be done to make an important difference in how you experience the fear and anxiety. There are support groups, therapy, medications, and time going by that can be reassuring.
I also think that it is helpful to try to identify what it is that is making you anxious and fearful. Maybe there are specific concerns that you have that you could ask your doctor about; for example, getting an answer to a question that is currently uncertain in your mind. In my practice, I am always amazed at things that women are holding on to that are scary to them and that they are afraid to share. Many of those things can be resolved through discussion and by getting answers to questions that have reasonable answers. When you are diagnosed with breast cancer it comes as such a shock. Most women are struggling to figure out why it is happening to them and you end up looking over your life at various things you did or didn't do, and you wonder if any of those things may have contributed to the diagnosis. This can be the source of guilt, shame, and embarrassment, as well as fear. Getting those feelings out and expressing them can make a big difference, I think.
- Question from Jancy: I am not brave. Do I have to be brave? How do I make people know how really scared I am so they will understand?
Rosalind Kleban, L.C.S.W.
I think that it is important to be up front and honest with people about your fears and terrors. I think that people are looking at you to be brave because then it is easier for them to witness what you are going through. On the other hand, you are doing brave things—taking care of yourself and doing things that need to be done. It's always amazing to me how wonderful breast cancer patients look. That just covers what they're experiencing within—the terror, uncertainty, fear—how they are really feeling.
The thing that is most helpful is talking to other people going through this because only they understand the terror you are going through. Some of my patients said that they felt the only time friends could identify with their terror was after the 9/11 incident, which terrorized everybody (and especially New Yorkers). Their friends and relatives could now understand the fear, vulnerability and uncertainty that breast cancer patients experience—the acknowledgement that life could change in a minute. After that tragedy, it was suddenly easier to understand what the cancer patient faces.
- Marisa Weiss, M.D. Also, upon a diagnosis of breast cancer there are so many different procedures that a woman has to go through that she can feel like she is hit once with a diagnosis, but hit again and again with pieces of information, like when a lymph node inflammation comes back, for example. So the parallel to the 9/11 experience goes even further, where something horrible happened and you think that is the extent of it and not long after you may hear something equally devastating. In addition, the treatment of breast cancer is extremely difficult in that you are hardly given a chance to recover and heal from one treatment to the next. It's like being hit when you are down, and the inability to take a break and feel a little bit more like yourself again during this whole process makes it so much harder to manage all of the difficult feelings that come up naturally during the experience.
- Rosalind Kleban, L.C.S.W. I think that the commonality between 9/11 and a cancer diagnosis is uncertainty. I think most people feel that they are in control of their lives. Cancer lets you know that we are out of control, and so does terrorism. As awful as those treatments are, if we felt we had certainty and we could be assured that chemotherapy would end our fear of cancer, chemotherapy would be easier to tolerate. It is the uncertainty of the future that is truly the terrorizing thing. Patients have told me that chemotherapy would be more manageable if people could assure them that the outcome would be positive. The out-of-control aspects make it as difficult as it is.
- Marisa Weiss, M.D. There is a way to ease some of the uncertainty about treatment. Your health care providers can sit down with you before each type of therapy is given and can explain what is involved and what to expect during treatment. That can be helpful to you. It doesn't take that much time for them to prepare you for what will happen. Even without any 'guarantee' that the treatment will work 100% of the time (which no one can promise you), just knowing what to expect can really ease one's discomfort.
- Question from Bren: I have a very deep fear that my cancer may have spread. How are the doctors able to say for certain that it hasn't when they don't seem to really check anywhere but the lymph nodes?
Rosalind Kleban, L.C.S.W.
I will answer this from the psychological point of view and then will ask Dr. Weiss to go over it from a medical slant. Having fears of the cancer spreading is common and very normal. We see it all the time. It's very important to bring that to the attention of your doctor because the anxiety that you may suffer is enormous and the best place for that to be relieved is with your physician, so you need to do that sooner rather than later.
Hopefully your physician can do what needs to be done to answer your questions satisfactorily and explain the rationale for why he/she is doing or not doing certain tests. But you need to be as clear as you can be about what frightens you and why you are thinking about those things. With a companion, go to your physician and have those things explained. I think it is important to go with a friend to make sure that you understood the answers and that the physician attended to your questions. Often patients are intimidated and they don't get to all of their questions, so you need someone to make sure that you are getting what you need from your physician.
Marisa Weiss, M.D.
At initial diagnosis your doctor will conduct certain tests to assess the extent of the disease that can be detected using various tests depending on your situation, the results of your pathology report, and any signs or symptoms that you may be experiencing. All of this information is collected and your individual situation is assessed. Based on this evaluation, treatment recommendations are made. Then, after you have finished prescribed therapies, it is very normal to want a 'clean bill of heath.' It would be great if there were a perfect test that could provide this reassurance. In reality, there is no perfect test and, in general, over time your doctor usually does not conduct whole body studies to continue to make sure that everything appears normal. This is because doing a lot of tests repeatedly over time has not been proven to be helpful.
But being followed carefully by your team of doctors and other health care professionals with physical exams and a lot of good listening to you, along with strategic use of imaging studies and a schedule of follow-up that you feel confident in—all of these things can provide you with more peace of mind than feeling like after treatment you will be abandoned by your health care team without any plan for careful surveillance.
Rosalind Kleban, L.C.S.W.
It's very common—almost to be expected—that after treatment is over for a period of time patients become hyper-vigilant about signs and symptoms of the cancer's return. People no longer suffer from ordinary chest colds, body aches...everything is assumed by the vulnerable patient to be cancer. The woman who is prone to migraines her entire life suddenly, after treatment, is worried that her cancer had spread to her brain.
I see it as the secret side effect of a cancer diagnosis, the feeling that every physical symptom may be a new cancer. Most people around you see that the treatment is over. The subject is closed. But patients live with insecurity about their health for quite some time after treatment, and feeling that every ache and pain is cancer is part of it. After a reasonable period of time, all symptoms should be reported to your physician, who should see that your questions are answered. With time and working with your physician, you will go back to have a better understanding of your body. A cold is just a cold and an ache is a sore muscle.
- Question from Chat-3: Can you talk about the value of being told that 'we' now know unequivocally that stress contributes to cancer?
Rosalind Kleban, L.C.S.W.
The institution that I work at, which is Memorial Sloan-Kettering Cancer Center, is frequently asked that question and absolutely rejects the notion that stress causes cancer. It is somewhat in line with the philosophy that we discussed earlier about the positive attitude. It is all a notion that we are responsible for what happened to us. It adds to guilt that we caused this. There is no good scientific evidence that stress causes cancer.
Having said that, it would be a worthwhile goal to try to control stress in our lives. Less stress and we have an easier life. There is no connection, however, between stress and the development of cancer. To accept that is to set a goal for yourself that it is possible to live a life without stress, which will just give you more stress.
- Marisa Weiss, M.D. There is no question that experiencing stress can make you feel really lousy and I have seen a number of my patients really accomplish a great deal of progress in this area by learning how to manage their stress so it feels less difficult for them. First, trying to identify what things are urgent and which things are not as important as you thought up front and which you can push off to the back burner. I absolutely agree that stress itself does not cause cancer. However, it can really mess up your day. If you do experience chronic stress and anxiety, you may receive significant help from an appropriate choice of medication. Talk to your doctor or people in your life that bring reassurance to you and see what they can do working with you to make the stress in your life better, just so that the quality of your life can be improved.
- Question from Karen: I had surgery on the 13th of May and I'm back at work, feeling over-tired, and I don't want to answer people's questions on how I feel all the time. How do I cope?
Rosalind Kleban, L.C.S.W.
It's interesting that people around us take tremendous liberties when a person has been diagnosed with an illness. It's important to remember that you are in control of your life as much now as you were before and therefore you are going to discuss what you want to discuss. You will answer the questions that you want to answer and reject those that you don't want to answer.
As I mentioned earlier, you have to come up with words that are appropriate for you, but you have to be prepared for people to ask you inappropriate questions. There are several answers that come to mind such as, "Thank you very much, but I prefer not to talk about this right now." Another answer is, "This takes up a lot of my time and I'd like to spend the time hearing about what you are doing." Whatever way you can stop people, you have to stop them. You are in charge of what you want to talk about. Going to work is helpful because it provides a distraction, but you have to take control. However you want to get at it, you need to maintain control over the situation. Talk about it freely if you want, but if not, change the conversation.
Marisa Weiss, M.D.
You are entitled to your privacy at home and at the workplace and these people, as well-intentioned as they may be, will usually take their cue from you. So again, if you thank them for their concern and say that this feels like a private matter to you and that you'd like to get back to work, which is why you are there, then they will usually (but not always) leave you alone.
Editor's Note: See Breastcancer.org's section on Breast Cancer and Your Job for more information.
- Question from Worried Brother: My sister was just diagnosed with breast cancer this week. She is nervous, worried, and upset about dealing with the future (treatment, etc). As her brother, I am not sure what I should do or say to make her feel more secure and optimistic. What would you recommend?
Rosalind Kleban, L.C.S.W.
The way you describe your sister's feelings is entirely normal and just what we would expect from someone newly diagnosed with this illness. No one can really answer your question as to what you can do to help her outside of being with her to support her—that part you already know. But how to help her in more detail you can only know by asking her. What would help her may be different than helping another woman. So you need to ask her what would help her...going to the doctor with her, etc. It is important to listen to her answers, take her seriously, give her room to talk, let her tell you her feelings, etc.
What is not helpful is when friends and relatives tell women with breast cancer that they don't have anything to worry about. It's not helpful to tell them they should not be feeling that way, that things are going to be okay. What is helpful is to allow them to talk, share their feelings, be open and honest, and to let them know that you heard what they had to say. The way to help is to assure them that you will be there to help them in any way that they need. But they need to tell you what they need and you need to listen as carefully as possible. It sounds like your sister is lucky to have a brother like you.
- Marisa Weiss, M.D. It is hard for a lot of people to accept help from others because it can feel like they are giving up control or independence in their lives, so it may take time for your sister to accept your thoughtful offers of help. When you ask her what she might find helpful, it may be useful to have prepared a list of suggestions that you throw out there just in case one or two or three of them would appeal to her. For example, an offer to pick up food, go to the dry cleaners, clean the kitchen, pick up the children, find a good book or read to her, answer the phone for a period of time so she can take a nap, a ride to a doctor, or an offer to pick up film or medical records and deliver them to another doctor. These are things that you can offer to do that she may not even have thought of.
- Question from binney1: After 16 months of treatment and tests for breast cancer (and some collateral heart damage), I've developed a terror of tests and doctor visits that I didn't used to have. It's unreasonable because the tests aren't even especially painful (CT scans, MRIs, etc.) and all my doctors have been wonderful. But before a test or office visit I spend a week or so in despair. Any suggestions?
Rosalind Kleban, L.C.S.W.
Having that kind of fear and anxiety is not all that unusual. Most women are not afraid of the tests themselves because, as you point out, they are often not painful or difficult. It's the anxiety of the results and what that may mean for the future that is terrifying. It sounds like this has already been discussed with the doctors in charge (which should be done), but I can suggest that you go with a companion who would be reassuring. You may also want to explore the relaxation techniques that are available—deep breathing, visualization, things that can affect you that day or as you approach the test.
People with more difficulty often use medication as an aide. There are easier and harder times going through this, and going through the tests and anticipating the results are often the most difficult part of the process.
- Marisa Weiss, M.D. You can develop an arrangement with your doctor that the doctor knows when you will get a test and you can arrange a phone call thereafter or an office visit when you can learn about the test results. This way, the amount of time of uncertainty can hopefully be shortened. Keep in mind that most of the time the patient herself schedules the test according to her own particular life and the doctor has no idea when the test is actually performed until the actual typed report comes across his or her desk. So you might be out there waiting and wondering and worrying about your test results and wondering why your doctor has not called you with the results, when your doctor might not know that you even had the test completed. Here is a place where good communication can go a long way to ease the natural fear that can occur.
- Question from Patty: One of my fears as a breast cancer survivor (2.5 years out) is that I will not get back my sexual interest or ability to reach orgasm. My sense of smell is greatly diminished, too, which I miss in sexuality. Any suggestions about regaining these things? I'm on Effexor XR 75 mg qd and tamoxifen 20 mg qd.
- Answers - Rosalind Kleban, L.C.S.W. I think that will take both of us to answer. I think that, with time, people's sexual interest and appetite return. However, this is often mitigated by where the patient falls in terms of menopause. Menopause often has an effect on women's sexuality and this can be a factor here if the person is menopausal or if a younger patient being thrown into early menopause by treatment adds all kinds of additional difficulties to the ordinary menopausal affect on sexuality. If interest does not return with time, there are things that can be done. At our facility we have several people that we refer patients to for help with sexuality. Sometimes there is medication, sometimes sexual therapy is helpful, but it is very important that this area be addressed by the patient, partner, and physician because it is something that we hope the patients get back to after the diagnosis.
Marisa Weiss, M.D.
I completely agree. There are significant medical issues that you can talk to your doctor about, including what lingering side effects of chemotherapy may be interfering with your ability or interest to have or enjoy sex, along with the ongoing effect of hormonal therapy. Another medical issue is pain and sometimes nausea if your treatment is recent or ongoing. These things clearly interfere with interest in sex. As you move through your treatment experience and you try to get beyond feeling like a cancer patient, hopefully you can move into a different state of mind in which you can begin again to enjoy fun, curiosity, relaxation, and spontaneity. This type of state of mind is what will create the possibility of enjoying sex again and the intimacy again.
The best sex occurs within the context of a good relationship, so whatever you can do to recharge your relationship and build the closeness and the connection will go a long way to your feeling sexy and interested again. Also be aware that some medications can take away your interest in sex. Effexor, which you are taking, is one such medication. Anti-depressants can take away some of your interests. You have to work with your doctor to strike the right balance between improving your mood and feeling more upbeat (and less depressed) without taking away your libido.
Breastcancer.org has a whole section with information, guidance and support for reclaiming this part of your life, called Sex andIntimacy.
For those of you out there who are not in a sexual relationship at the time of diagnosis or treatment that are hoping to establish that in the future, there is definitely hope. I have had a lot of patients who have been able to meet someone special, create a nice relationship with that person, and enjoy their companionship through their lives. There are some hurdles to overcome but there is surely a lot of loving out there that is waiting for you.
- Question from binney1: Maybe Worried Brother's question really is about his own fears. It's soooo hard to be the helpless friend or loved one looking on. You're afraid not only for the woman you love who has cancer, but that your offers of help will be all wrong or be rejected. How do you cope with cancer fears when the cancer you fear is not even your own?
- Answers - Rosalind Kleban, L.C.S.W. A cancer diagnosis provokes fear and anxiety in everybody around us, so that everyone tonight who has asked questions about dealing about the outside world—whether it was the brother concerned about his sister or the office mate—all of these things reflect our friends' own fears, terrors, and anxieties about what a cancer diagnosis would mean to them. One of the reasons that we get inappropriate or insensitive responses is because it taps into everyone else's fears and worries. It is almost too much to ask the patient to deal with everybody else's feelings. You have enough on your plate to deal with. Often, when I talk to patients about how to handle those around us, they feel overwhelmed by yet another burden. They want to take care of themselves and they don't have much energy left to take care of brothers, office mates, and friends. But people around you will often take their cue from you. If you behave with optimism and confidence, they will take their cue from that and treat you that way. But it is too much of a burden to ask yourself to treat yourself that way all of the time.
- Marisa Weiss, M.D. What about the mother with young children who needs to help her children deal with their anxiety? That is a burden and responsibility that she must handle.
- Rosalind Kleban, L.C.S.W. The burden and responsibility that a young mother has in dealing with her children is difficult and painful but has to be dealt with. We recommend open, clear, honest communication with children. It's usually a parent's reflex to protect children. I think it is Wendy Harpham (a doctor with children) who writes about how to handle children with a cancer diagnosis. She often writes about how we cannot protect our children from sad things. We can, however, teach them coping mechanisms to deal with difficult things that come up in anybody's life. While it is a burden for the young mother to have open communication with her young children, she needn't pretend that she is not upset and concerned. Cancer affects the entire family. Everyone is frightened and concerned, and if we are open with each other and share our fears we can also be open and support each other.
- Marisa Weiss, M.D. Your choice of words—open and accessible—is really important here. It is so important to create an environment within your home that will give permission to your children to express their concerns.
- Rosalind Kleban, L.C.S.W. That can be done if you are open to expressing your concerns. If you have an atmosphere that you are all brave soldiers, it puts the child in a position of coping with it all by him/herself. If you are open, you can all express how you are feeling.
- Marisa Weiss, M.D. Whispering between adults at the edge of a room when your children are there is not a good idea, because children usually fear the worst and they will probably imagine that horrible terrible things are about to happen. They might even believe that they are responsible for those bad things, so in creating the atmosphere of expressing and sharing it's good to be mindful of how they may misperceive some of your actions.
- Rosalind Kleban, L.C.S.W. In summary, I just want to thank Dr. Weiss and breastcancer.org for this opportunity to participate in something that I know is helpful to people. I just want to thank you for the opportunity to reach out to people. It has been my pleasure to work with breastcancer.org.