Cancer treatment engulfs patients in a blur of intense emotion, pain and activity as they and their medical teams attack the disease. Then, when treatment comes to a successful end (as, fortunately, it so often does) and patients are released to journey on their own back to normalcy, many quickly discover that recuperating from cancer is one thing, but recovering from its treatment and impact on your life is quite another.

Even surviving cancer affects people emotionally as well as physically. It can upend family dynamics, sometimes permanently… it can disrupt or completely change professional lives… and it virtually always creates anxiety concerning future health and care, as well as uncertainty about how to go on living a regular, daily life once again. For many survivors, what lies ahead is a long, often lonely path with lots of new challenges. Happily, there is excellent help to be had.

The Emotional Path

A number of cancer centers have developed specialized survivorship programs. Two of the most comprehensive are the Lance Armstrong Foundation Adult Survivorship Program and the Perini Family Survivors’ Center, both run by the Dana-Farber Cancer Institute in Boston. I recently spoke with the Perini program’s codirector, Kenneth Miller, MD, to discuss how cancer survivors can prepare themselves for the survivorship journey.

Dr. Miller told me that survivorship has three phases…

Transition is the period immediately after treatment ends. Accustomed to having health professionals hovering over them, many patients feel a letdown when they’re done with treatment. They may be surprised by feelings of abandonment and loss.

Extended survivorship is the second phase, covering the several years immediately following treatment. This time is characterized by active surveillance and monitoring aimed at ensuring that any recurrence is caught quickly and treated appropriately. Cancer survivors may find themselves coping with physical and cognitive limitations that they had not anticipated. Uncertainty and a sense of being adrift with no particular destination are common feelings at this point, although many patients also report a growing sense of confidence and hope.

Permanent survivorship refers to the years and even decades of life after cancer. It’s generally thought to begin at the five-year mark, which is the time when many cancer survivors are officially said to be at very low risk for recurrence. Many now dare to feel cautiously optimistic — it is the time when they travel, in Dr. Miller’s words, from “being cancer-free to being free of cancer.”

Physical Challenges Cancer Survivors Face

Of course, cancer patients need to remain vigilant about taking care of their physical health as well. Specifically this means…

  • Being on the watch for potential long-range side effects from their cancer therapy. Not only can cancer treatment cause immediate side effects, but others can arise later from treatment that happened years ago. Possibilities include heart, liver, kidney, bone, and central nervous system problems, as well as painful neuropathy. When your cancer treatment ends, ask your oncologist about what symptoms you should watch for and what you should do if they occur.
  • Keeping complete treatment records including surgery, chemotherapy drugs, radiation details and the like. It is important for cancer patients to have this information and to maintain an updated version, with any new relevant information about their health. Online health record services are excellent for this purpose, since they are easily updated and the files can be sent to physicians as needed.
  • Having an interested, involved health team. Best is a long-standing relationship with a doctor who knows you well and has been kept up-to-date on your progress throughout cancer treatment. In the absence of such a relationship, it is important to find a doctor who is interested in knowing the details about your illness and treatment and who uses that information to help you achieve your best possible health. It’s a good idea to bring a naturopathic physician on board, since these specialists focus on patients’ overall health outlook and function.
  • Not ignoring other aspects of your health. Cancer history aside, survivors need to stay current with their blood pressure, cholesterol and blood glucose levels and other health measures. What’s more, having had cancer once means you are at higher risk for other forms as well, both genetically and possibly because of the treatments. Cancer screenings, such as colonoscopy, skin examinations, PSA testing and digital rectal exams (for men), and mammograms and Pap smears (for women), therefore, are a top priority. Finally, Dr. Miller stresses that it’s of special importance for people who have had cancer to follow a healthy anticancer lifestyle — including eating a healthful diet, exercising, resting and managing stress.

A World of Resources to Meet Your Needs

There is more support and information available to cancer patients today than ever before, including advice on legal questions about health coverage and access to social workers who specialize in treating issues related to cancer, including family relationships, sexual discomfort, body image and changes, anxiety and other related difficulties. Helpful resources include…

  • Major academic hospitals and cancer centers, which typically offer extensive resources, including support for cancer survivors.
  • The LIVESTRONG Care Plan, (www.LiveStrongCarePlan.org), based on research from the Institute of Medicine, offers extensive online resources and information on how to create your own wellness plan.

All these are helpful tools to make the transition from patient to survivor a smoother and more comfortable journey.