Our friends at Memorial Sloan Kettering Cancer Center have reprinted an article by Esther Napolitano, from June of 2014 that contains detailed advice about living with advanced cancer.
People living with advanced cancer face unique challenges, but there are resources available to help. Memorial Sloan Kettering social workers offer advice on managing some of the challenges of living with advanced cancer.
Having advanced cancer may mean that your disease is not responding to treatment and that long-term remission is no longer likely. It may be that your cancer has returned or spread after therapy, or that doctors have run out of standard treatment options.
“We are seeing a burgeoning population of people who will never be post-treatment survivors, but who instead are ‘on-treatment’ survivors living with their cancer as a chronic illness,” says social worker Roz Kleban, who co-leads Memorial Sloan Kettering’s support groups for women with metastatic breast cancer.
Learning You Have Advanced Cancer
People with advanced cancer can expect to live longer and maintain a better quality of life than ever before, thanks to advances in diagnostic techniques and cancer therapies. However, the news that a cure is no longer possible can be devastating. Managing symptoms and physical changes brought on by the disease and its treatment, navigating complex family dynamics, and contending with work and financial hardships are just some of the possible issues that can arise.
While learning that you have advanced cancer is difficult at any age, younger adults with metastatic disease may face additional challenges. Many are just beginning to form their professional identity, affirm themselves in relationships with intimate partners, or live independently apart from their parents. They may be deciding whether they want to become parents themselves or worrying about the future of the young children they already have.
“As you’re trying to define and deepen your own identity, you’re faced with a life-threatening illness and uncertainty,” says social worker and family therapist Carolyn Fulton. “When you realize that your illness is not going away, you have to allow yourself to grieve those losses, which can include not being able to work or have children.”
Addressing Your Emotions
“Get to know who you are, understand what you’re facing, and decide how you want to live in the midst of the physical changes that occur with advancing illness,” advises Ms. Fulton, who co-leads an online support group called Making Today Count for Memorial Sloan Kettering patients with advanced cancer.
“Experiencing a mix of emotions such as fear, anger, and grief is normal,” explains Ms. Kleban. “Being positive doesn’t affect your cancer. Don’t beat yourself up when those awful, dark thoughts creep in. Learn to control them rather than suppress them.”
Find a time when you can attend to those feelings, then try to set them aside. “The best coping strategy is distraction,” she suggests. “Keep your life busy with things that you deem important and pleasurable. The subject of your day should be, ‘What can I do today that will make me feel good?’”
Finding What Works for You
There is no right or wrong way to cope. Each person must come to terms with a diagnosis in his or her own way and at his or her own pace. “Find a way to work through this. Individual therapy with a social worker, psychologist, or psychiatrist or complementary therapies like meditation or guided imagery, particularly when faced with increased anxiety, are helpful avenues to consider,” recommends Ms. Fulton.
Connecting with someone else affected by advanced cancer in a support group or online community can offer perspective and validation and ease feelings of isolation. Faith and spirituality are also important sources of strength and comfort for many people.
“Work on keeping hope alive,” adds Ms. Kleban. “Hope does not mean in this instance hope for cure. But there’s hope for pain-free activity. Hope that you will get to that next vacation you planned with your friends. Hope that you can smooth over the problem you’ve had with your mother all these years. Hope to be present and live life as best as you can.”
Talking about Your Illness
Taking charge of the things you can do something about can be helpful at a time when you don’t have much control over many aspects of your health situation.
“One piece of control that you still have is how and when you choose to communicate information, and protecting your own feelings throughout that process,” says Ms. Fulton. “You may decide to designate a friend or family member to email your loved ones about your medical situation, mentioning that you are not interested in discussing it but want to make sure everyone knows what’s going on.”
“How you field questions about your health is up to you,” adds Ms. Kleban. “If you want to respond, you may choose to say that you have a chronic illness, or describe it as a type of cancer that demands constant attention. If you prefer not to talk about it, say so and change the subject by asking, ‘How are you doing?’”
Acknowledging the Elephant in the Room
It’s common for people living with advancing or terminal illness to think about death and have moments of anxiety because of it.
“Anxiety may intensify when left untreated, particularly at the end of life if you refuse to think or talk about your end-of-life wishes and define what quality of life means to you,” says Ms. Fulton. “But if you address this anxiety and allow yourself to sit with harder emotions like the sadness, anger, and frustration often connected to the realization that the cancer is not going away, then you can gain valuable insight.”
“Bringing your family together in therapy can help open the lines of communication so you can discuss the difficult topics — including fears about anticipated death — and bridge anything that might feel stressful within those relationships,” adds Ms. Fulton.
Managing Caregivers’ Expectations
People who care for loved ones with advanced cancer say that one of their biggest worries is witnessing the physical changes associated with disease progression, particularly toward the end of life.
“There are many misconceptions about the physical and emotional realities of cancer,” notes Ms. Fulton. “Caregivers are often quick to make assumptions and worry that their loved one is depressed when actually they are physically fatigued from the illness.”
Individual counseling and family therapy — such as programs offered through Memorial Sloan Kettering’s Counseling Center — help patients and family members come to terms with how advanced disease impacts your ability to live, especially as you move closer to physical decline.
Addressing Your Physical Symptoms
It can be difficult to decipher whether new symptoms such as aches and pains are associated with your cancer or with the normal aging process. “Everything becomes terrifying, but you can’t expect the doctor to take care of you unless you report what’s going on,” says Ms. Kleban. “The doctor prefers that you report these things, and at this stage you can’t be that arbiter.”
Complementary therapies such as acupuncture, exercise, and yoga can play an important role in helping to control symptoms such as pain, fatigue, anxiety, nausea, and difficulty sleeping.
Palliative medicine is another option. “The goal of palliation is to keep people comfortable throughout the disease, not just at the end of life,” says Ms. Fulton. “It can help alleviate pain and distress as much as possible as you move through your illness.”
Meeting the Needs of People with Advanced Cancer
There are resources available offering practical advice on work, finances, and preparing for the potential loss of physical mobility and independence; medical information about clinical trials and ways to alleviate symptoms and improve quality of life; and emotional and psychological support to help you cope.
“We need to continue to find ways to meet the unique needs of this population, to acknowledge and advocate for them, and to give them a voice,” says Ms. Kleban, who was involved in the creation of the Metastatic Breast Cancer Network — the first national nonprofit advocacy group dedicated to the issues faced by people with metastatic breast cancer.
Another resource, called the Advanced Cancer Initiative, was created by Memorial Sloan Kettering’s Department of Social Work to help patients and their families deal with issues that may arise from advanced and often incurable cancer. It offers educational and support programs to address common concerns such as participation in clinical trials, coping through use of complementary therapies, talking with your children about cancer, and finding meaning in life while dealing with advanced disease.
