On Wednesday, June 19, 2002, our Ask-the-Expert Online Conference was called Dealing with Breast Cancer Fears. Rosalind Kleban, L.C.S.W. and Marisa Weiss, M.D. answered your questions about aspects of breast cancer that cause concern.
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.
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.
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?
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.
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?
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 one 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?
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?
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.
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?
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.
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.
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?
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.
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?
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.
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?
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.
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?
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.
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.
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 Intimacy, Sex, and Your Love Life.
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?
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