After cancer, now what?

There was good news recently on the cancer front: More Americans are surviving cancer than at any other time in history.

According to a report from the National Cancer Institute and the U.S. Centers for Disease Control and Prevention, there are now 11.7 million people – almost one out of every 20 Americans – who’ve had cancer at some point in their lives. Their numbers have grown by 2 million in the past decade and almost quadrupled since 1971.

It’s both heartening and concerning. Heartening because a cancer diagnosis no longer automatically means someone’s life is over; concerning because the health community still seems mostly unprepared for how to help people live as well as possible after cancer.

In a way, the snail’s-pace progress toward quality survivorship care isn’t surprising. For decades the focus was simply on successfully getting patients through cancer treatment. What happened to them afterwards was a lesser priority. Research has been slow to develop a reliable body of information on the long-term and late effects of cancer treatment and on how people fare physically, emotionally and socially after treatment.

It has only been in the past decade or so, for instance, that cancer-related cognitive dysfunction, more familiarly known as chemo brain, has been officially recognized, even though patients have been talking about this unfortunate side effect/aftereffect for years. Through recent research, we now know more about it than we used to but there’s still much that’s unknown. It’s not clear if chemo brain is due to cancer itself or if treatment, specifically chemotherapy, is to blame. It’s not known if some patients are more vulnerable to it or what, if any, risk factors there might be. Although it’s often believed the cognitive dysfunction will eventually go away, we don’t really know this for sure; perhaps with the passage of time, survivors simply adapt to it.

Doctors and patients also are often at sea when it comes to followup care. How often do cancer survivors need to be monitored? What risks and long-term or late effects should they be on the lookout for?

Consider Dr. Sam LaMonte, a surgeon from Florida who underwent radiation therapy in 1991 for head and neck cancer, only to develop blockages in both his carotid arteries 15 years later – apparently a late complication from the radiation. In an article that appeared in the winter issue of Cure magazine, Dr. LaMonte says he was “dumb as a door” about the potential risk for late effects from radiation.

Late effects often emerge beyond when survivors may be looking for treatment-related problems, and it’s this lack of awareness that sends LaMonte into spasms of frustration. It also keeps him busy trying to educate health care professionals and survivors. He wants patients to know that, while radiation may have saved their lives, it may also have turned them into time bombs.

But more importantly, LaMonte stresses, many late effects can be treated or lessened if survivors are monitored, and their primary care physicians know what to look for.

Evidence-based clinical guidelines for survivorship care are still in their infancy. Moreover, the information doesn’t always filter down to those who need it, especially to primary care doctors at community clinics where many former cancer patients continue to receive most of their ongoing care. It has been more than five years since the Institute of Medicine released its landmark report, “Lost in Transition,” on the shortcomings in post-cancer care in the United States, and there’s scant sign of any significant improvement.

To complicate things, the survivor population is extremely diverse. Of the 11.7 million Americans currently alive after a cancer diagnosis, the majority – 7 million – are over the age of 65. The largest groups are women who’ve had breast cancer (22 percent) and men who’ve had prostate cancer (19 percent). These numbers tend to obscure the fact there are millions of younger survivors whose needs might be quite different from those of older people. They also obscure the many different types of the disease we call cancer. Someone who has undergone aggressive chemotherapy and a bone marrow transplant faces an entirely different set of future health risks than someone who has had a combination of surgery and radiation, or surgery alone. There’s not going to be a one-size-fits-all strategy to helping people live as well as possible after a diagnosis of cancer.

The good news is that the state of knowledge is clearly far better than it used to be. A few months ago the Minnesota Medical Association even devoted an entire issue of its magazine, Minnesota Medicine, to survivorship care. The road is still long, however, and if the new survivorship statistics are any indication, the need to address this issue is becoming more urgent with each passing year.