Few Oncologists Consider Cancer Patients' "Burden of Survivorship"

Zosia Chustecka

July 09, 2009

July 9, 2009 — A diagnosis of cancer is usually a life-changing event, and helping patients with this realization can be as important as reviewing their physical well-being, says Robert Fisher, MD, a medical oncologist from the Rocky Mountain Cancer Centers, in Longmont, Colorado.

Excessive attention is given to the active treatment of the cancer and not enough on the period that follows, when patients may be struggling with "the burden of survivorship," he suggests in an essay published online June 29 in the Journal of Clinical Oncology.

"We view recovery from the standpoint of frequency of office visits and treatment dates," Dr. Fisher writes. "But from the patients' perspective, as active treatment ends, their cancer experience may be just beginning."

After the crowded treatment schedules and excessive attention from medical staff, patients are suddenly left with nothing. Many have described this time as "falling through an empty void," Dr. Fisher writes. "Why is it that we, as medical oncologists, are not there for our patients to avoid this freefall?"

"I think this is due to our errant, excessive attention to those on treatment," he writes.

More effort should be made to understand "the trauma experienced by many patients in their years as cancer survivors."

"We are all too busy, are always overscheduled and always behind, but somehow we must have our patients feel their follow-up visit is as important as any other," Dr. Fisher told Medscape Oncology. "To have an interest in having patients articulate how life has changed since their cancer was diagnosed and to encourage patients to put their diagnosis into a larger perspective is important."

"I have learned that being an oncologist is not just about giving chemotherapy," Dr. Fisher writes. "It is also about inspiring patients."

Posttreatment "Letdown"

Some of the feelings that cancer patients experience after ending their treatment are described vividly in a series of posts on the New York Times Well blog, prompted by a recent article about "posttreatment letdown."

In the article, reporter and prostate cancer patient Dana Jennings comments: "Even though it was a relief to be done with the radiation, it still felt like getting fired or laid off.

"We patients know that not having treatment is a sign of progress," he writes. "But sometimes having treatment, doing something, is easier than the uncertainty, than the waiting. It's like being stuck in a traffic jam and taking the first exit that comes up just to keep moving. When treatment ends, it's just you and your mutinous body warily thrown back on each other."

The article struck a chord with many patients. Several congratulated the journalist for articulating exactly what they had themselves been feeling.

"I absolutely felt this 'letdown,' " writes Margaret, a breast-cancer patient who had undergone a mastectomy, chemotherapy, and radiation. "Actually, I became a complete emotional wreck — cried at the drop of a hat, which I had not done, ever — even at the time of my diagnosis.

"Everyone was full of cheer about 'now you can get on with your life,' and I was just starting to process what the hell I had gone through," she writes.

"When we are ill we don't allow ourselves to focus on the gravity of the situation," another cancer patient agrees. The time and effort it takes to navigate the healthcare system and survive the rigors of treatment leave little opportunity, and so it can be a real shock when treatment ends. It is only then that "we can look back and think 'Holy cannoli, I could have died!'

"People assume that the end of recovery is a happy time, and of course it is," she writes. "But that doesn't mean you don't sometimes have to process feelings from the earlier period that you couldn't afford to grapple with then. It's like recovery beyond recovery."

"The aftermath of the whole experience was definitely more emotionally draining than the actual treatments," writes a patient who underwent chemotherapy and radiation for Hodgkin's disease. "It takes time to get back into the swing of life, as recovering mentally is a slow rebuilding process."

Dr. Fisher commented to Medscape Oncology that the posttreatment letdown comes from both the sudden loss of attention from oncology staff and from a realization that the patient is suddenly "alone" in their fight against the cancer. "In general, we do little to transition patients to 'life after treatment.' When a patient goes from this overwhelming, intense scrutiny and support to 'we'll see you in 3 months,' it must be psychologically hard for most."

To ease the transition, Dr. Fisher says he informs patients of their future reduced schedule of follow-up well in advance, and he sees patients at 4 to 6 weeks after their last treatment in order to deal with psychosocial issues that may have occurred in that transition period.

Close Bonds With Oncology Staff

Several of the posted messages on the New York Times Well blog highlight the close bonds formed during the treatment period.

"Friends, colleagues, and even other family members can't relate to the intimacy felt with the oncology nurses and fellow patients," writes the mother of a son with Hodgkin's lymphoma. "For a time, the lives of strangers collide during the most dramatic of times — then we all go on our way."

"No one warned me I'd miss my oncology nurses, the radiation techs, and the feeling of safety I got from the routine of cancer treatment," writes 1 patient. "I seemed to cruise that part."

But the posttreatment phase was "very hard," she continues. "I floated aimlessly about. . . . I couldn't focus or get things done."

This sentiment is echoed by Kate, who had undergone surgery, 12 rounds of chemotherapy, and 35 sessions of radiotherapy. She describes feeling "a bit adrift" when all the treatment ended, and she experienced anxiety and depression.

Both of these patients say they were very lucky to have found a therapist who understood and who helped them. Coincidently, in both cases the therapist was also a cancer survivor.

Kate also started her own blog, which she says "helps me and I think helps others.

"Survivorship is a relatively new area of focus," she writes. "Lots of us didn't make it before, so it wasn't a real issue. And most oncologists haven't spent much time thinking about what happens when we live."

Lives Forever Changed

This is the point that Dr. Fisher also raises in his editorial. The experience of having cancer and becoming a survivor changes a patient's life forever.

"We must realize that our patients' return office visits often function to recharge them and give them security and comfort until the next office visit," he writes. But it also offers an opportunity for the oncologist to inquire about more than just physical symptoms. Asking a patient how cancer has changed them may assist in healing and recovery, he says.

"Just as we follow our patients diligently for disease relapse, we should use the same diligence in our encouragement of all surviving patients to resume meaningful living," Dr. Fisher writes.

But this return to meaningful living can take some time, as patients point out in their messages.

"I am a different person living in the same world, and it's going to take a while for me, and the people around me, to adjust to that," writes a leukemia survivor.

"After about a year I realized that I would never feel like I did prior to diagnosis, either physically or emotionally," writes a breast cancer survivor. "When I finally understood this, I slowly began to enjoy life more and not be as consumed by worry."

"It was well over a year before I felt like myself mentally and wasn't terrified I was going to die," writes Ellen, who had a kidney tumor removed by surgery. "Every year, going for the annual follow-up tests, scans, etc, brings up all the anxiety and fear they'll find some type of cancer again, I doubt that feeling ever goes away."

But another patient writes that he is "glad he had cancer."

"Cancer changed me — for the better. I'm happier now than I have ever been," Marc writes. "But part of me misses the treatment."

Marc underwent surgery and chemotherapy for non-Hodgkin's lymphoma. "It was a heroic time for me. My usual upbeat but sarcastic take on life was suddenly inspiring to others. Treatment presented new and challenging obstacles every day, and my victories were truly victories."

Now, he writes, "life has gone back to its old routine, but I still crave the challenge of recovery."

J Clin Oncol. Published online June 29, 2009. Abstract


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