It takes a cancer diagnosis to truly understand how cancer care is delivered in this country. The experience opens your eyes to the unacknowledged deficiencies and blind spots of our current system – most significantly, the lack of attention to the side effects and permanent collateral damage caused by cancer and its treatments.
The new targeted therapies and immunotherapies often result in fewer side effects. But those treatments are relative newcomers, and are often given in addition to the mainstays of cancer treatment – surgery, radiation, and drugs – or as I have often referred to them, slash, burn, and poison.
In the past, we typically had only one goal for cancer treatment: save your life at all costs. But with more cancers diagnosed early, and with more effective cancer treatments, we are now not only saving more lives but also prolonging the lives of those who can’t be cured.
With so many survivors, and with a growing number of people living years with metastatic disease, it is time for us to make sure we understand all of cancer’s impacts and seriously focus on addressing its collateral damage. That is why we developed the Metastatic Breast Cancer Collateral Damage Project and are asking women and men to take part in our project and complete the related questionnaire.
But it’s not enough to identify the damage. We also need to talk about ways to decrease the severe effects of cancer and its treatments. That’s where palliative care comes in. Palliative care should not be confused with hospice. Hospice is end-of-life care, and it focuses on managing the period of time when treatment options have been exhausted or would have no benefit. Palliative care is about managing symptoms as people continue living their lives.
As a recent viewpoint in the Journal of the American Medical Association (JAMA) explains, palliative care “is a philosophy of care aimed at improving the patient and family experience and quality of life,” regardless of your prognosis. It should be a companion to treatment.
Ideally, your oncology team will provide palliative care as soon as you start treatment. The focus is helping you manage your symptoms so that you can continue to function normally. If your oncology team is not meeting your needs, ask for a consultation with a palliative care specialist. These specialists have training in helping with the physical, social, financial, emotional, and spiritual distress of cancer patients and their family members and caregivers. Check out the Foundation’s ImPatient Science™ video “How Palliative Care Can Help.”
There is work to be done to ensure that all cancer patients get palliative care. As the article in JAMA notes, about 25 percent of doctors training to become oncologists are not taught how to provide primary palliative care. There is also little funding for palliative care research.
My own experience with leukemia four years ago made me realize the value of palliative care specialists. I spent many weeks in the hospital taking narcotics to help reduce severe neuropathy, with minimal success. Finally, a neurologist recommended that I take the anti-seizure drug gabapentin, which gave me complete relief. It turns out that this generic drug is great for treating nerve pain. It took the neurologist rather than the oncologist or pain specialist to suggest it.
Palliative care specialists understand that treating cancer is about more than treating a disease. They know that paying attention to a patient’s quality of life is as important as providing that patient with the best treatment options. Their work addresses what many of us know too well: A cancer diagnosis changes your life, no matter the outcome.
We hope that our Metastatic Breast Cancer Collateral Damage Project will identify issues that are not being acknowledged and need to be addressed. As part of this project, we will be hosting a Provider-Survivor/Advocate Think Tank, where we will assess the results of the questionnaire and develop recommendations on how to address the collateral damage of metastatic breast cancer and its treatment.
Of course we need to keep searching for ways to end cancer completely. But we must also focus on ways to improve the quality of life of those facing the disease today. The JAMA article says it well: “Cure without compassion is an exercise in killing malignant cells, while failing to support the living person.”
