December 2013 Ask the Expert: The Emotional Impact of Living With Metastatic Breast Cancer
During the month of December, Living Beyond Breast Cancer expert Neal Niznan, LCSW, answered your questions about how a metastatic breast cancer diagnosis may affect your mood, how to cope with difficult emotions, ways to manage your emotional concerns along with those of your family and friends, and where to find resources for peer or professional support.
Remember: we cannot provide diagnoses, medical consultations or specific treatment recommendations. This service is designed for educational and informational purposes only. The information is general in nature. For specific healthcare questions or concerns, consult your healthcare provider because treatment varies with individual circumstances. The content is not intended in any way to substitute for professional counseling or medical advice.
How do I find women with stage IV disease, and roughly similar backgrounds, with whom to talk and form friendships? It would be helpful to have at least some friends with a similar set of issues. That said, I worry that knowing such a group of women could be hard when they become sicker or die. I think I'm ready to try to handle that, though.
I was first diagnosed with breast cancer in 2007 and have just been diagnosed with advanced breast cancer. How can I get my friends and family to understand that this journey will not be like my first one?
I have survived estrogen receptor-positive breast cancer 3 times. I am now NED (no evidence of disease) and have screening by CT annually. I am now having difficulty not thinking regularly about IF/WHEN it will pop up in another location. I worry about if I will know about it soon enough to treat it and what symptoms I can safely ignore. I am frustrated by my lack of concentration and inability to maintain my thought processes when under stress. How do I get my work/life in balance without dwelling on what may never occur again, or may come back tomorrow?
How do I get my husband to understand that I need more support emotionally to be able to be sexually interested while on exemestane (Aromasin)? The medicine causes reduced libido — almost to the point that it is nonexistent without lots of physical/emotional effort. It is difficult to bring up my need for personal support with other current issues in our lives. Is there a gentle way to ask for support and not "upset the apple cart" without professional help, considering the number of other areas of stress in our lives?
Question: Sometimes it is harder to deal with other people’s emotions. How do I encourage others to "act normal" around me? When others cry and worry about me it feels so negative it brings my mood down.
Mr. Niznan: Many times our mood is influenced by interactions with those around us. It is often hard to deal with others’ uncomfortable emotions regarding your breast cancer, especially when they express their fears and worry for you. We do not have any control over what others are feeling. If their feelings are having a negative impact on you and “bring you down,” here are a few things you can do to address the situation:
First, their feelings may be coming from a place of love and concern for you. You can acknowledge or validate how your breast cancer might be upsetting them and thank them for their concern. Second, you can let them know you manage your feelings daily and try to maintain a realistic but optimistic attitude because this helps you to move forward and do the things you want to do. This helps you to keep your own worry and discouragement in check. Third, you can also let them know that one of the ways they can really support you is to be a bit more upbeat around you. This, in general, helps them understand what they can do for you and hopefully gets the relationship to a better place.
Question: Lately, I get upset because I’m constantly asked when my chemotherapy treatment will end. People don't seem to understand that my treatment will never end unless there is a cure. When I explain this they are shocked and then don't know what to say. It is awkward and I avoid the situation. I have become avoidant of a lot of social situations now because I feel that with my diagnosis I am the elephant in the room. I used to be so social but now I don't want to go out, even with close friends. I don't like the constant questions. I just want to feel normal. How can I talk with people about my diagnosis and treatment and not have them look at me like I have two heads? Is it okay to ask close friends not to talk about things I used to share with them?
Mr. Niznan: Here again others’ perceptions of what your cancer experience is all about may have a negative impact on you. Friends do not want to come across as inconsiderate of you and your situation so they attempt to say things and ask questions that express concern. Their intent is genuine even if their execution is terrible. If they really do not know anything at all about cancer and its treatment, they wind up pushing the conversation to one of those awkward moments and you end up with the responsibility of fixing it. It makes sense if you have been a part of a few of these conversations in the past you will tend to avoid them in the future, at all costs. The cost, however, is not being social and spending time with friends that you enjoyed being within the past.
It is not healthy to isolate yourself or live in fear of the next social interaction. You may need to protect yourself from these conversations before they start and teach those around you how they can best support you. To turn this around to your advantage, you may have to set the tone of the conversation with others. If you find yourself having to “tell all” you may have to stop them mid-sentence. Thank them for their concern and say, “I’ve decided that today is one of my ‘no cancer days’ where I don’t do anything related to my breast cancer, not even talk about it! What I really want is to just spend time with you and maybe we can talk about my breast cancer another time.”
Mr. Niznan: This is a great question. As you begin to develop coping skills to manage the many changes and challenges of living with metastatic breast cancer, you will find things that work well for you and those that don’t. You will continually fine tune what works and also try new things. You might even find yourself utilizing positive coping strategies that worked during an earlier time in your life.
However, you may reach a point where despite whatever you are trying, along with the support you receive from others, your level of emotional functioning is declining. This may be the time to contact a therapist who has a background in working with those who have serious medical illnesses. Changes in your mood or pervasive patterns of thinking that impact your daily functioning are areas to discuss with your therapist. Taking the opportunity to discuss these changes with a therapist will enable you to understand your situation better and possibly develop new strategies for coping.
Sometimes, your doctor or therapist may recommend seeing a psychiatrist who might prescribe medicine to support your ability to cope. Please be assured that electing to speak with a therapist is not a sign of weakness but one of strength because you are making a positive choice to help yourself and begin to feel more like you.
Question: I have so many friends and caring neighbors who offer to help me and ask if I ever need help with anything. I do need help, but I'm not comfortable asking for it. Do you have suggestions on how to break out of this shell and seek the help I need when it is right there? I don't want to be a bother or burden to friends or family.
Mr. Niznan: Being on the receiving end of people’s help and kindness is often a difficult thing, especially if you are the one who is always there for others. I like when you said seeking the help when “it is right there” if they only ask. Many patients are surprised by the outpouring of love and support they receive from family, friends and even strangers. To ask for help is not a sign of failure or that you are not able to take care of yourself.
There are many situations in life that are very complex and challenging. Do you really need to prove to yourself that you are self-sufficient and self-reliant? The help you may receive may not be just for yourself but for members of your family, too. Many people who really care about you want to help but often they do not know what to do.
If you give them a suggestion you may be pleasantly surprised how eager they are to do it. It is not a burden to them; they want to do it for you. It’s a win–win situation. They get to do something for you and you get the help you need. You know the good feeling you get when you have helped someone else? Try not to deny that same good feeling to someone else.
Question: How do I find women with stage IV disease, and roughly similar backgrounds, with whom to talk and form friendships? By similar, I mean a pretty broad set of women: I'm middle aged and I think that cohort would make the most sense as a group for me to connect with. Younger women have a different set of issues in many ways, though I would likely enjoy their company. All ethnicities and sexualities would be welcome in my book. This is something I'd like to make happen locally in the Philly area. Phone assistance, while welcome, is less effective. Some things are really only understood by other cancer patients. It would be helpful to have at least some friends with a similar set of issues. That said, I worry that knowing such a group of women could be hard when they become sicker or die. I think I'm ready to try to handle that, though.
Mr. Niznan: Attending a professionally-lead cancer support group is a very good venue for discussing the challenges of living with metastatic disease. Attendees can candidly express their thoughts and feelings with others who “really get it.” The support comes from speaking and listening to other women living a shared experience. Listening to others in the group helps normalize your experience, reassuring you that you’re “not the only one who feels this way.”
Being in a support group is not for everyone. Some people prefer speaking one-on-one with other patients. Since the focus of the group is metastatic breast cancer there is the reality that members of the group over time may have progression of their disease and die. Attending these groups could be a double-edged sword. Group members provide and receive support from each other on living with the disease, while at the same time being confronted head-on by of the seriousness of the illness.
One place to get information on support groups in your area is from the American Cancer Society website at cancer.org. You can also informally find women to network with by attending conferences on metastatic breast cancer. Living Beyond Breast Cancer hosts a number of conferences and programs throughout the year.
Mr. Niznan: I am very sorry to hear about the loss of your friend. Grieving the loss of a friend is hard enough, but for you their death takes on a deeper significance. There is the repetitive loss of yet another person you know who had breast cancer and the anticipatory loss of thinking about someone else you know who may die of the illness in the future. It naturally raises one’s fears about mortality and the uncertainty of the future. Coping with this repetitive scenario is very hard and at times wears us down to a point where we are not sure of our own ability to handle too much more.
One suggestion is to lean on the support of others who also knew this individual. Try not to grieve in isolation. Your focus can be on the loss of this friend and their significance in your life. When you find yourself entertaining those tougher questions of “Who is next? Is it me?,” try to redirect your thoughts to grieving in the present and less to anticipation of the future. It is hard not to have these deaths impact how you see your life. Maybe use the opportunity to look at what you have right now in your life; significant relationships, accomplishments and things you continue to enjoy.
Question: I was first diagnosed with breast cancer in 2007 and have just been diagnosed with advanced breast cancer. How can I get my friends and family to understand that this journey will not be like my first one?
Mr. Niznan: You know the terrain of your life has now changed. Others close to you may refer back to your first encounter with breast cancer and say “Just go through treatment and you’ll be all better again.” These words of encouragement come from their wanting this situation to go away so you can get your life back to normal again. Yes, you may need to be the “educator” of others regarding the significance of your newly diagnosed breast cancer. First, you have to get your head around this news and then set the tone for others by the way you live each day. Those who can handle this reality will be with you on the journey. Others who don’t quite get it may be less available to support you.
Mr. Niznan: I do not know how much time I have any more than the next person. Living with a terminal illness, however, forces us to look at the ephemeral nature of life. The only thing we have any certainty of is what we experience right now, in this present moment. To always contemplate when my life will be over is a torturous mental exercise. Your time would be better spent looking at what is most important to you: What do you value most in life? Then, work on doing things that incorporate those values. This is hard to do if you always feel death is staring you right in the face.
Regarding the level of pain associated with advanced disease, you should talk with your healthcare team about your concerns. Today, there are many medications that enable patients to manage their level of pain and still function.
Mr. Niznan: Seasonal Affective Disorder (SAD) is a real condition that many people live with. Sometimes they are completely unaware that the change of seasons is impacting their mood. SAD is connected to the amount of available sunlight people are exposed to during the winter months when the days are shorter.
Many people with SAD spend time in front of desktop light boxes to increase their light exposure during the day. Individuals who are predisposed to depression, experiencing changes in mood and decreased levels of functioning, would benefit from speaking with a therapist. Recommendations from a psychiatrist for medication could also help combat the effects of Seasonal Affective Disorder.
Mr. Niznan: The depressed individual is often the last to know they are experiencing depression. Those who live with them begin to see the changes in mood and behavior over time. Living with someone who is depressed is a challenge. Living with someone who has depression with substance abuse compounds the issue. They need to get professional help. It is often very hard to get them engaged in the process of helping themselves. You may need assistance from family members or friends to get the spouse the help they need.
Mr. Niznan: The management of multiple medications for depression is best left to the prescribing psychiatrist. Sometimes generic medications can be prescribed instead of brand name drugs, which often are more expensive. Medications alone are not always the cure-all for depression. A combination of medication and talk therapy could be more effective. This of course would be an added expense, but it may expedite a positive change in your mood. Once the medication has helped ease some of the depressive symptoms, you will be in a better space to work on strategies suggested by your therapist. A therapist may recommend changing your sleep patterns, your meal schedule and increasing activities that provide enjoyment. Often you have to really push yourself to change present patterns of behavior that maintain the depression.
Question: I have survived estrogen receptor-positive breast cancer 3 times. It was originally in my breast at 38 years old ('97), then metastasized to my ovary ('07) and finally to my lung ('09). I am now NED (no evidence of disease) and have screening by CT annually.
I am now having difficulty not thinking regularly about IF/WHEN it will pop up in another location. I worry about if I will know about it soon enough to treat it and what symptoms I can safely ignore. I am frustrated by my lack of concentration and inability to maintain my thought processes when under stress — which is continual in my new career in financial planning. How do I get my work/life in balance without dwelling on what may never occur again, or may come back tomorrow? Any suggestions?
Mr. Niznan: You have gone through so much over the past 13 years! With all those medical experiences in the past, it might be very hard not to feel like the sword of Damocles is dangling above your head. Look at all you had to handle and where you are now. Reflect on what strengths in your personality you needed to tap into in order to get through everything. You needed to compartmentalize fears and doubts to focus on decisions that were in front of you at the moment.
You can utilize those same inherent skills now at your job. Recognize those worrisome thoughts as they intrude. Then tell yourself, “This is not the time to wrestle with this question. I can think about it later if I choose.” You have to actively push those thoughts away at that moment. Regarding being aware of the signs of recurrence, you may need to express some of these worries with your healthcare team so they can reassure you and review the plan for monitoring your health.
Question: How do I get my husband to understand that I need more support emotionally to be able to be sexually interested while on exemestane (Aromasin)? The medicine causes reduced libido — almost to the point that it is nonexistent without lots of physical/emotional effort. It is difficult to bring up my need for personal support with other current issues in our lives. Is there a gentle way to ask for support and not "upset the apple cart" without professional help, considering the number of other areas of stress in our lives?
Mr. Niznan: It sounds to me as if you are both under a lot of stress currently and you are trying not to bring on even more stress. Unless your spouse can read your mind, he really will not know what type of support you need. He may know what he needs, but this could be inconsistent with what you feel emotionally and physically due to the Aromasin.
Making space to have a conversation about what is really important to you is the first step. It is too hard to discuss these issues with distractions and other activities going on around us. You want to be heard and want to hear what your husband has to say. Start by finding the time to be together without interruption. Second, he needs to hear that this issue is very important to you and that you are looking for his help to make it better for both of you. Tell him how you see the situation and what it is like for you. Then you allow him to express his thoughts. You may not be able to come to some resolution in this first conversation, but if it goes well you are setting a pattern of healthy communication for subsequent talks.