The Right Help at the Right Time!

If you're a cancer survivor, you've already learned how to rally your medical and support teams and use them wisely. For most people, this means consulting with specialists, gathering enough information about the disease to make good medical decisions, following through with treatment, and leaning on friends and family for emotional and psychological strength. In the beginning, when you're running in crisis mode, cancer will seem to be the center of your life-all your doctor appointments, all your conversations, and all your energies are focused on nothing else. In the beginning, cancer is all-consuming.

But once you have been treated and you've made it through one or two "clean" follow-up appointments, the crisis of cancer is past. Slowly, over months or years, comes the recognition that cancer is no longer the center…that although cancer will always be part of your life history, it does not need to rule your life forever.

Different people come to this realization at different times. For some survivors, being free of regular visits to the oncologist is a cause for celebration. Others, however, have a more difficult time letting go of the medical team that saved their lives. With other types of medical specialists, the time to let go of the physician relationship is clearly defined and logical. For example, once a broken bone has healed, there is no longer any reason to continue to see the orthopedist. But cancer is in a category all its own, and the boundaries are not so clearly marked. This can make many patients uneasy about ending the patient-physician relationship.

The Bond of Cancer

Going through a crisis situation bonds people together. Just as soldiers in wartime develop "foxhole friendships" that last a lifetime, women who survive breast cancer form heartfelt bonds with other women survivors, as well as the oncologists, surgeons, nurse practitioners, and others who were with them during their toughest ordeal. The amount of time a woman spends with these specialists can be extensive.

"A woman is going to become very familiar with me," says Kyle Terrell, a surgical oncology nurse practitioner at Johns Hopkins. "I spend a lot of time with each woman. Sometimes I'm the first person they meet, even before the surgeon. I educate them about breast cancer before surgery, and I talk with them about drain management after surgery, and even later I'm available for information about prostheses, mastectomy bras, and other basic information. I follow women through their whole post-operative course."

That kind of intense involvement creates a bond of trust, which can be important to recovery and satisfaction with treatment.

In addition, many women who receive a diagnosis of breast cancer were perfectly healthy beforehand. For them, interaction with their oncology team gave them the most intense medical exposure they've ever had. They may never have established a close relationship with any other doctor in their lives. The cancer team, therefore, can become the standard for care that a woman begins to expect from every other physician she sees. And those other physicians-whether they are gynecologists, primary care physicians, or other specialists-may have a difficult time meeting that same high level of trust and involvement. But oncologists and their teams are there to treat cancer. Once the crisis and follow-up are over, sooner or later the times comes to break the ties with the cancer team and move on with living.

When to Let Go

When is it reasonable to expect to make a transition back to routine care? There's no set answer it varies from woman to woman. Five years is the typical amount of time before a woman and her oncology staff can feel comfortable with the decision to move on. "But there's nothing magical about that number," says Dr. John Fetting, medical oncologist and clinical director of the Johns Hopkins Cancer Center. "It reflects a substantial amount of time since the problem began, and usually enough time to begin making the transition."

Every breast cancer survivor needs to understand that a doctor wouldn't recommend making the transition from intensive oncological care to routine care if it weren't safe for them to leave. If the patient is uncomfortable or highly anxious, the transition can be slow. "But the majority of patients are more than happy to stop seeing us," says Dr. Fetting.

The team can steer you to the appropriate type of care, depending on your needs. For some women, simply seeing a good internist is all they need, one who can authorize mammograms and write prescriptions just as the oncology team can. Other women might prefer to see a specialized gynecologist as well as an internist. Either way, the goal is to find other doctors you can trust with your health, transition away from the oncology team, and let your new doctor help you care for the new you…the cancer survivor.

"It's hard to break these ties," says Kyle Terrell. "Treating cancer takes as much time as a full-time job, and the team provides a whole physical and emotional support system….It's sad to move on, even while you're hoping you won't ever see us again."

For every woman, the key to a successful transition away from oncological care is confidence …confidence that she has a life beyond cancer…confidence that she can regain control over her own health…and confidence that she can once again think of herself as healthy. And each woman has her confidence restored at a different rate after surgery.

"Time is a great healer and confidence-builder," says Dr. Fetting. "Some women are shaken profoundly by this experience, and it takes the longest time to look forward to a future with confidence. Others are quickly able to reestablish confidence, optimism, and hopefulness."

There are some women, however, who become "stuck" in the oncology relationship. These women don't regain their confidence and feel vulnerable, uncertain, anxious and stressed. The intensity of these feelings usually diminish with time, but they can make the transition much more difficult. If a feeling of wholeness and sense of self aren't regained after several years, the woman may be advised to seek counseling to help her get past those feelings of fragility that may hold her back from enjoying life.

The cancer team loves to see a woman become healthy, confident, and independent. But making the transition to routine care doesn't mean being abandoned or cut adrift. Resources are available to help each woman find the type of physician that will give her top-notch care and help take care of all her health needs, not just those that pertain to cancer. And the door to the Breast Center is always open in case there is a problem or a concern months or years later.

"It's important that my patients know that I am always available to them, even though we are changing the type of relationship," says Dr. Fetting. "Instead of routine oncology visits, after the transition I'll seem them as needed. I'm only a phone call away."

Carol Svec is a freelance consumer health writer and author of "After Any Diagnosis: How to Take Action Against Your Illness Using the Best and Most Current Medical Information Available."

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