As time passes after a metastatic breast cancer diagnosis, many people find their lives falling into a pattern of “treat, scan, repeat.” A treatment plan works for a while and imaging scans look good — until suddenly they don’t. Then you and your doctor work together to come up with a new plan, and the pattern starts all over again.
Naturally, it can be scary to ask the question, “When treatments stop working or become too difficult, what's next for me?” Sometimes, a person’s family, friends, and even members of the healthcare team might encourage a rosy, “chin-up” attitude. It’s not uncommon to feel some discomfort about this subject matter, and some loved ones might avoid frank and honest conversation. But it makes sense to consider what you will do when the side effects (and stress) of constant treatment outweigh its benefits.
This is an important topic to raise with your treatment team, even if it still seems far down the road. Some women worry that their doctors will think they’re not fully committed to their treatment plans if they start talking about the end of life. However, your doctor might not raise this possibility if you don’t. You can simply say, “I know we still have treatment options, but what will we do if I reach a point when treatments are no longer working or the side effects are too difficult?” Or, if you and your doctor have tried many treatments but the cancer is still progressing, you could say, “What should our plan be now and in the future?”
“One thing I hear a lot is ‘I don’t want to disappoint my doctor,’ says Kelly Grosklags, L.I.C.S.W., B.C.D., a Minneapolis-based oncology psychotherapist and grief counselor. “It's understandable but it’s not anyone’s job to take care of their healthcare team. And frankly, physicians can be relieved when a patient brings this up first.”
Here are some questions to consider and discuss with your treatment team. It’s fine if your answers change over time. The most important thing is to get the conversation started.
- Do I want to continue treating the cancer no matter what, even if the benefits are small and the side effects become hard to manage? Maybe there’s a milestone you want to reach in the future, such as a child’s graduation, a wedding, or another important personal occasion. Or maybe you’re not comfortable with stopping treatment if there is at least some benefit. Ask about working with a palliative care team who can partner with your treatment team to help you manage side effects.
- If the side effects of treatment start to outweigh the benefits, would I consider stopping treatment? Side effects can take their toll. So can the repeated stress of going for imaging scans and other tests to see if the cancer is responding and then waiting for the news. Some people reach a point where they decide that the downsides of cancer treatment outweigh any benefits. Kelly Grosklags notes that this decision often brings a sense of relief and even freedom to her patients. They have more energy to do the things they want to do and quality of life improves. Even though some family and friends may see this as “quitting” or “giving up,” Grosklags says, people generally arrive at this decision only after they feel they've done everything they could.
- How will I know when the time is right to even think about stopping? Kelly Grosklags finds that intuition is a powerful guide for most people: They can sense that the cancer isn’t responding despite multiple courses of treatment. If imaging scans show the cancer is progressing and symptoms such as pain and fatigue are worsening, these can be signs as well.
If I decide to stop treatment at some point, what’s next for me? Stopping treatment for breast cancer is not the same as stopping treatment entirely. (As Kelly Grosklags likes to say, “There is always a plan!”) The care plan changes focus from treating the breast cancer to treating your symptoms so you can live well. Your doctor might recommend that you start working more closely with the palliative care team and then shift to hospice care. Many of us think of hospice as a place for people in their final days of life, but that’s not entirely accurate. Hospice is a care approach that focuses on helping people live well at the end of life — physically, mentally, and emotionally — and can be delivered at a care facility or in the home. In the U.S., the average time in hospice care is just 7 days, meaning that patients often don’t get the full benefit of what it has to offer: symptom relief, emotional support, and family support. Considering hospice sooner makes sense for most people, even if they’re not quite ready to stop anti-cancer treatments. Often it becomes evident that hospice can help not just with the physical process of dying, but with the emotional suffering and anguish that comes before it for many people and their families.
“People sometimes feel like they’re going to lose their control in hospice, but I actually see them gaining more control,” says Kelly Grosklags. “They’re not asked to give up their lives. If they’ve always gone to the lake in July, then they can do that. In hospice, we get very focused on one question: What do you want the rest of your life to look like?”
You can visit our Hospice Care section for more information.
Expert Quote“Every person living with cancer has a wealth of information internally — what we call intuition. The quieter we are, the more we can hear internally, and then if we have the courage to listen to that, it can be an excellent guide for us.”
–Kelly Grosklags, L.I.C.S.W., B.C.D.