Managing the Emotions Around Metastatic Breast Cancer

By on October 29th, 2014 Categories: Day-to-Day Matters

Shock, anger, terror, loss of control — these are just some of the feelings that can hit when a person is diagnosed with metastatic breast cancer. And most people living with metastasis would agree that there are very few individuals who truly understand the depth of those emotions.

To find out more about ways to navigate the sometimes overwhelming feelings that can come up, I had a conversation with Sage Bolte Ph.D., M.S.W., L.C.S.W., O.S.W.-C. Dr. Bolte is director of Life with Cancer, Inova Cancer Services. Life with Cancer is an Inova Health System not-for-profit support and education organization in Northern Virginia offering support for patients and families including navigation, counseling, support groups, education, and mind-body wellness programs.

CN: People living with metastatic breast cancer often describe it as a roller coaster ride they can’t get off of — there’s no “opt-out.” How can a person sit with the idea that this uncertainty, fear, and sometimes-chaos is the new reality?

Dr. Sage Bolte: Give yourself permission to redefine that what you want today or tomorrow may be different from day to day, and know that that is okay. Sometimes when you’re on the ride, it can help to look at things that can sustain you for today, rather than for a year.

If it feels overwhelming, then what you need to do is narrow in on the part that you can control. When it feels never-ending, what DO you have control over right now? You have control over what you ask your doctor and how much information you receive, how you spend your time today, how you ask for support, how you don’t ask for it, and how much information you decide or not to share — and that is really important, because if you fully disclose that you’re living with advanced breast cancer, or keep it private, you have to live with consequences/reactions. You have control over choosing to see someone who is a spiritual leader or therapist who can teach you some techniques such as mindfulness meditation or prayers that are helpful. You have control over choosing to see a cognitive behavioral therapist who can teach you how to renegotiate some scary or negative thoughts you may have. Often times when on the ride, the first place we go is to the idea that that someone else is driving and that “I don’t have any control.” We don’t necessarily have control over the disease and that is scary and overwhelming. So what can we do to lower that anxiety and fear — what can we plan over the next 3 months?

Three months is often a manageable period of time that you can plan, even if you’re on a new kind of chemo. Typically you have 3 months until the next scan. What can you do that brings you joy during that time? You can have a weekly lunch with friends, go out with your partner, take a long relaxing bath — little things that nurture you so that you can sustain yourself during the roller coaster ride — because it will keep going.

CN: The time before follow-up scans can bring some of the more intense anxiety. What do you tell people?

Dr. Sage Bolte: “Scanxiety” is a very real experience and I don’t want to minimize that. There are other things you can do, too, or actions you can take to make it less anxious. Take a friend with you who can make you laugh. Take music that relaxes you if that works for you. There are guided imageries that work for managing anxiety and fear just for that purpose. Think about doing something positive after the scan. This keeps you looking forward and can distract you from the scan. Plan little things during the following few days until you get your results. Line up your friends. “Okay, your job today is to take me out for lunch.” Things like that. If you find that distraction or other therapeutic techniques are not helping, then I might suggest what I call “better living through chemistry”! If you’re really ramped up, then you’re not always able to access the internal resources that you have. So you may want to talk to your doctor about anti-anxiety medication.

The anxiety doesn’t really go away completely, but you figure out how to manage it. If you notice that your anxiety before a scan is really consuming you and you cannot concentrate at work, if you’re having that constant low tremor in your body — if that is where you’re reacting — then it’s essential to pay attention to you. You don’t want to do anything that makes you feel worse, so talk to your doctor about resources such as therapy. Stress affects our bodies in powerful ways and we want to work to keep our bodies as healthy as possible.

CN: Some people with metastatic breast cancer choose to keep going to work. There are plenty of emotionally sticky things that can come up here. How can a person keep things as normal as possible for herself?

Dr. Sage Bolte: Making the decision to disclose at work is a big deal and very personal. Knowing oneself and one’s work environment is important. And the other component of that is if you choose to disclose, especially to your company, it may be helpful to get someone to come with you. A counselor or nurse educator might be able go into an office and do a short “in-service” to help employees understand what to do. You could bring an oncology social worker, a spiritual leader, or some other supportive person. Resources like Cancer and Careers can be helpful as well. If you’re working with a team, usually when they’re ramped up and asking a ton of questions or don’t say the most helpful things, it’s because they want to help and they just don’t know how. If you can give that information up front — what they can do to be supportive or what you do or don’t need/want from them — it’ll be a lot easier for you to return to work. If it’s all hush-hush, and people don’t know if they can talk about it, it might feel like walking on eggshells because you don’t know who knows what, and that can be really stressful. Develop strategies for how to keep your staff informed in ways that you want to keep them informed. Colleagues may need to be educated on what living with advanced breast cancer means and how to best support you, what questions to ask, that day to day may each look a little different — this is again, something you can inform.

CN: For a lot of people with advanced cancer, facing the ongoing emotional ups and downs over the long term can become difficult to tolerate. Some might contemplate whether they can take a temporary treatment break to lessen some of the physical side effects and stress. How do you make that decision?

Dr. Sage Bolte: Taking a treatment break is a very individual decision. Weigh the pros and cons: What do you know? What is your doctor telling you? What is your body telling you? What are your spirit, your family, and your friends telling you? Truly, it comes down to you. Certainly, the doctor weighs in. Some people are afraid to take a break because they worry that it encourages the perception of “giving up” or “not fighting as hard.” But sometimes it’s about actually TAKING CONTROL so you can focus on other pieces of your life. For instance, “I want to take a trip to Europe and enjoy it.” The benefits do not come without risks. But sometimes the benefits outweigh the risks. And you have to sit with the possible consequences and rewards of taking a break.

You also have to manage the expectations of others around taking a break. If a partner panics and says, “Oh my God, don’t take a break,” how do you manage that? If that happens, I may say, “Sit down with counselor, a neutral party, and sort it out.”

Often when women ask the question about taking a break, it means they are mentally, spiritually, and physically exhausted. So explore with your provider what aren’t we doing well enough? Managing symptoms? Emotions? Spiritual needs? And can we figure out ways to meet those needs and continue treatment? Are there other contributing factors? What else is not going well? If we can help find how to help support those resources, or help you feel better, you might be better able to assess whether a break is what you need or want. Along with your physician, an oncology social worker might help you sort through these questions. You can identify an oncology social worker at the Association of Oncology Social Work website.

CN: And then there are those occasional meet-ups with other kinds of anxiety. How can someone maintain some level of internal equilibrium each day, knowing that her cells may be doing things she knows nothing about, or that she may feel a pain somewhere that she hasn’t previously felt?

Dr. Sage Bolte: Ask, “What can I control? What decisions am I making that are nurturing my body now? What questions can I ask my doctor about tests he/she is doing in between scans?” Often, regret is preventable. Not always. But say to yourself, “If I think ahead to my next scan and it showed evidence of progression, are there things I could be changing now or doing now?” Then try those things. I also think looking at “How do we sit with uncertainty?” is important. It’s hard for ANYONE to sit with uncertainty — disease or not. We live in a world where we can react right away or get information almost instantaneously. The Internet and so many other things make that possible. So not knowing can really be unsettling.

Again: What do I have control over? What I put into my body, how I use my body, tracking my negative thoughts, my spiritual life, minimizing things that cause more anxiety — caffeine, stress, conflicted relationships. Sometimes women will choose to compartmentalize the cancer for a few hours a day — put it on a shelf mentally for 3 hours. You can say, “I know it’s there, I’m not ignoring it, but it is not going to drive decisions today.” And be mindful of that conscious choice. Some women worry that if they do it for too long it means they’re being ignorant and ignoring their body for too long. “How can I trust my body and not feel betrayed by my body?” I hear this a lot. Getting to know your body again is important and building trust in the knowledge of your body. So mindfulness and visualizations can help. Visualize healthy light bringing renewed healthy cells into your body that can help you feel good about what you are doing with your body. Be intentional about how you spend your time so you can feel like you’re spending your time in ways that are helpful and encouraging.

Many women with stable disease feel, “If I let my guard down, I’ll be swept up and caught off-guard” if my scans come back and show progression. And so they seek out support groups or online information, etc. This is not always helpful in managing anxiety.  Some women find that going to support groups creates more anxiety and pulls them into thinking about the disease more than they want. The same can be true with blogs or online chats. If this is you, maybe counseling is for you — this provides a place where you can leave it. However, support groups, specifically professionally facilitated support groups, can be a great place to learn about how other women manage the day-to-day uncertainty and anxiety of living with advanced disease. This again goes to the point that every woman is different and needs to find what is right for her.

Claire Nixon, Editorial Director — Claire directs a team of writers, researchers, content managers, and physicians through the creation of high-integrity web content. She brings 20 years of experience in health communications and journalism to the Breastcancer.org team, as well as the lens of the patient – she was treated for breast cancer in 1998 and again in 2012. In her off-time, Claire enjoys creative writing, independent films, meditation, and the ocean.

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  1. Caroline Durham

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