We know we don’t have all the answers. That’s why we reach out to professionals who have more experience and knowledge about various topics. We recently talked about adjusting to life after receiving a breast cancer diagnosis with Stacy Lewis, MSW, ACHP-SW, LMSW. The Women’s Cancers Program Coordinator at CancerCare, she provides counseling to individuals who are coping with breast cancer. She also counsels people who have experienced the loss of a loved one.
An Expert’s Opinions
I’m Taking Charge: How long after a breast cancer diagnosis do many women seek help from a counselor?
Stacy Lewis: Each individual is different, and will approach support services in different ways and at different times. I think it’s important to start by noting that there is no right or wrong time to ask for professional assistance if a woman feels she is struggling. Some women will seek out support right at the time of diagnosis, perhaps meeting with a social worker at their treatment center or oncology practice. If the woman had utilized counseling at a previous point in her life, she may decide to reconnect with that professional for support during treatment. For many women, the time period near the ending of active treatment (surgery, radiation, and chemotherapy) can be particularly difficult emotionally and mentally; often, women will seek counseling for the first time as treatment is coming to a close, to help process what they’ve just gone through and ease the transition into the post-treatment phase. Regardless of what point a women is at in her treatment or survivorship, professional counseling and supports are available and can be immensely helpful.
What are some of the most common emotions women you’ve talked to have dealt with?
Often at the time of initial diagnosis there is a considerable amount of fear and disbelief. Many women question why and how they got cancer, and share that when they are informed of the diagnosis they have a hard time hearing anything else after the doctor says those words. Other prominent emotions are anxiety, uncertainty, and sadness. Some may be openly emotional while others may become quiet and withdrawn. Some may want to share all the details of their diagnosis and treatment with their family and friends while others choose to remain more private. It is important to note that there is a wide range of emotions women may experience from diagnosis to treatment, and each woman will react and respond to the situation in different ways.
How can women draw the strength to cope? What do you tell women what they feel like they’ve given up or want to give up?
Women may draw from a variety of sources for strength throughout their breast cancer treatment. They may rely more heavily on their support network for practical and emotional support. Some may draw strength from support groups of others in treatment, or from their faith communities. Others may seek the professional support of social workers or counselors. I encourage women to consider self-care while they are going through treatment; things they can do that are unrelated to cancer and provide relaxation and restoration. Some examples may be going for a morning walk, listening to enjoyable podcasts, or sharing a lunch with friends.
If a woman feels like she wants to give up, the first thing I would caution family and friends is to resist the urge to be “cheerleaders” and say that everything will be okay. While a positive attitude can certainly be important, it is equally important for someone going through treatment to feel they are allowed to experience and share “negative” emotions. Instead, I would ask the woman to share more about what she’s experiencing that makes this an especially challenging time. Breast cancer can be incredibly difficult to go through and feelings of sadness, anger, and indifference are real and valid. As a social worker, I would also want to explore what about the current situation could be modified to make it more manageable. Perhaps enlisting family or friends to assist with practical tasks would make things seem less overwhelming. Maybe the woman is experiencing pain that has not yet been fully addressed. Sometimes a woman may benefit from seeking a “peer match,” someone who has gone through treatment before and can speak to her on the phone one-on-one. It can be very helpful for women to be able to speak to someone else who “gets it.” In any case, the goal is not to offer a “fix” but to acknowledge what the woman is currently experiencing, validate the very real challenges that accompany breast cancer, and offer guidance where appropriate.
Do the emotions every get easier to handle as breast cancer treatment continues?
This is very unique to each woman. For a lot of women, the time between diagnosis and the start of treatment can be one of heightened anxiety. This period is usually marked by a strong desire for treatment to get started or to “get the cancer out.” Women often share with me that although treatment wasn’t emotionally easy, they felt that their anxiety reduced somewhat once treatment started because if felt like they were doing something and making progress. Waiting, whether it’s for scan results of an oncology appointment, can bring increased [emotional] difficulty at any point during the process. The emotional trajectory is not necessarily linear, but for the most part rather fluid, with women experiencing periods that will be more challenging and times when things seem more manageable.
Once treatment is done, why might women still struggle?
The adjustment from treatment into survivorship can be a difficult one and [it’s] not uncommon for women to feel challenged by it. Some women have described it to me as having “blinders on” during treatment; there is so much going on during treatment that the medical aspect is understandably what they focus on. As I mentioned earlier, the time when treatment has ended may be the first time a woman has to step back and think about what she’s experienced. Emotions that may have been previously pushed aside come to the forefront, and this can feel isolating and discouraging for women who have just come out of a very difficult experience. Physically, some women may still be healing from surgeries or the side effects of chemotherapy or radiation after they’ve been completed. There are body [image] and self-esteem concerns that women often content with as they adjust to what their body or breasts look like after treatment. Additionally, the financial challenges of a cancer diagnosis and treatment can unfortunately linger for many years after the treatment itself has ended.
What is the biggest challenge you’ve heard from women about adjusting to life after treatment?
Often one of the biggest challenges has to do with peoples’ perceptions of what the woman should be doing and how she should be feeling after treatment. Many people expect that women “bounce back” immediately after treatment has ended, and for many women that is not the case. Sometimes women put pressure on themselves to get right back into work or resume the familial responsibilities that someone else took on during treatment, and often the physical and emotional healing that happens after treatment takes time. Family and friends may offer less support than they did during treatment itself, or they may express surprise that the woman’s primary emotion is not necessarily joy or relief that the experience is “over.” Although the treatment itself may be over, the recovery and reflection continues. Women sometimes feel ashamed or anxious if they feel they are not living up to their own or others’ expectations about what a survivor “looks like.” I encourage my post-treatment clients to be gentle with themselves about their feelings and capabilities, and to try to have an open, ongoing conversation with their support network about what they need.
Is there any way for women to return to life exactly how it was before being diagnosed?
Most women that I work with have shared that their lives are changed, to varying extents, after breast cancer. Each individual goes through their own process of integrating their cancer experience into their life moving forward, and each woman will determine what being a survivor means to her. Many women express a desire to “put the experience behind them” and quickly resume the life they had before; this is normal, but it is also important to recognize that this timeline is different for each woman. It is a process, and things don’t necessarily go right back to normal after the last oncology visit. Most women need some time to heal physically, mentally, and emotionally.
Is it normal for women to experience a change in interest after breast cancer? Are these changes often mild or are they profound?
Many women that I’ve worked with speak about a change in priorities or interests following breast cancer. The changes can be subtle or more overarching depending on the individual. For example, some women have shared that following breast cancer they experienced the desire to “give back.” They may begin volunteering at breast cancer organizations or fundraisers, or become a peer mentor to offer support and guidance to women who are earlier on in the cancer journey. Some women express a desire to make larger changes, such as reevaluating their work/life balance or spending more time with family and friends.
What can women find support as they adjust to post-treatment life?
I would always encourage a woman who it ending treatment to speak to her oncology team about a survivorship care plan before her last appointment. These documents include information on all the treatment she’s received as well as information on what her post-treatment care will look like (ie: how frequently she will have follow up appointment, who she can call if she has questions). Having a survivorship care plan discussion is [a] great first step in thinking about post-treatment life…[it] offers the woman a chance to verbalize to her team what her support needs may be, and allows the team to proactively offer resources. CancerCare’s e-booklet, “After Treatmet Ends: Tools for the Adult Cancer Survivor,” includes a guide for talking to your oncology team about your survivorship care plan.
There are [also] numerous organizations offering support to women with breast cancer and those post-treatment. CancerCare offers free psychosocial supports to individuals nationwide through our online support groups, educational materials, and short-term counseling. I would encourage women to visit our website www.cancercare.org or contact our Hopeline at 800-813-HOPE (4673). Our Hopeline is staffed by oncology social workers who can provide information on all of CancerCare’s services, and direct callers to additional resources. Some other breast cancer organizations I refer to frequently are Young Survival Coalition, Living Beyond Breast Cancer, Triple Negative Breast Cancer Foundation, The Sister’s Network, SHARE, and Metastatic Breast Cancer Network.
What advice can you give to women who are adjusting to life after breast cancer?
The main advice that I would give is for women to allow themselves the time they need to adjust, and know that every woman is different in terms of how long it takes for them to feel back to “normal,” however they define it. I would encourage women to not be afraid to speak up and seek professional support if they find that they are struggling emotionally, and to know that support is available to them as they move forward.
I’m Taking Charge sincerely thanks Stacy Lewis, MSW, ACHP-SW, LMSW, for taking the time to do an interview with us.
CancerCare is the leading national organization for free, professional support services. The organization was founded in 1944 and provides services and information to help people manage the financial, practical, and emotional challenges of cancer. To learn more, please visit www.cancercare.org or call 800-813-HOPE (4673).