A couple of conversations and a news story over the past week have led me back to an appreciation of the miracles and the problems of cancer survivorship.
The messages are mixed: we have accomplished truly remarkable advances in cancer treatment, but those advances come with unanticipated and very real side effects.
A former patient of mine tracked me down about 10 days ago. He wanted to talk, and let me know about the recent events in his life.
The gentleman had Hodgkin disease at a young age, just when he was beginning to look forward to establishing his career and starting a family. The disease was treated successfully with radiation therapy, and his course was—in general—uneventful.
Eventually I moved on and we parted ways. In our conversation, I learned that he was successful in his career and his life. Then disaster struck unexpectedly.
Playing a sport he enjoyed, he had a cardiac arrest. The wonderful news in this part of the story was that a cardiologist was nearby, and my former patient was resuscitated. Talking with him a couple of weeks after the event, he had undergone surgery and was recovering with no apparent ill-effects.
The reality is that we have known that radiation therapy used to treat Hodgkins disease puts long-term survivors at greater risk of heart disease. The problem is that the patient and apparently his physician weren’t aware of that information and the recommended follow-up examinations.
As I told my patient, no one can say for certain whether or not his particular problem was related to his prior cancer treatment or a more typical cause of heart disease. The reality is that there are other significant causes of heart disease, including cholesterol, family history and other factors that sometimes we just don’t understand.
But we can’t ignore the lesson that we haven’t done a good job of letting doctors, patients and their families know about the long term effects of cancer treatment and what needs to be done to follow these patients. We also haven’t done a good job of helping patients find this information so they can be informed and serve as their own advocates.
The other experience—equally unexpected—was an email from the family of a young lady I first heard about a year and a half ago.
The initial call came from a very concerned relative. I didn’t know the gentleman. He was referred to me by a good friend of mine who asked if I could give some advice and guidance to a colleague of his.
The patient was this man’s sister-in-law. She was in her 30’s and had just been told she had fatal liver cancer. The family was despondent and desperate. A colorectal cancer, without apparent symptoms, had been diagnosed with spread to the liver. A doctor told her the disease was fatal and that not much could be done. The family was in obvious distress at the news.
I couldn’t promise miracles, but I did say that based on what he told me—and given her age and general health—she shouldn’t take “no” for an answer. My advice was to at least consider chemotherapy, and get into the hands of a team that provided the latest treatments for cancer that had spread to the liver. I couldn’t say that she could be cured, but there was a remote possibility that she could be helped. It was certainly worth trying, in my opinion.
The news in this week’s email was wonderful: the cancer had responded to the treatment, and the woman was now cancer free. He thanked me for giving the family hope, at a time when hope was in very short supply.
You can share this remarkable story. It is now being featured on a website from Johns Hopkins Oncology Center’s liver tumor center. The video offers a look into the life of a patient living with cancer, the effects of the diagnosis and treatment on her family, and the impact of advances in cancer treatment that truly made a difference in her life and the lives of her family and friends.
The last survivor news story is not a personal one, but something that many people across the country have seen for themselves this past week: the return of Steve Jobs to the public stage in his role as CEO of Apple after a liver transplant to treat cancer that had spread to his liver.
Mr. Jobs has been very quiet about his disease, but he clearly is a remarkable survivor. It’s fair to say that there have been questions raised about his treatment, but there is little question that he has returned to a very active role at his company, and a very active role in life.
Celebrities—as I have written and said before—are special people. They have accomplished much, but they are still people. On the public stage, they represent not just themselves, but the millions of others out there with cancer who function every day trying to earn a living, deal with treatment, and live their lives.
Mr. Jobs has accomplished much, but perhaps one of his greatest accomplishments right now is representing the cancer survivors who live among us every day, doing what they need to do to live their lives.
We are surrounded by people who have survived cancer, who are being treated for cancer, who are struggling with cancer. Cancer is part of their lives, and it is part of our lives.
But we have far to go. We still don’t have enough survivors. We still have those who struggle with the long term impact of a diagnosis of cancer. We still have much to learn about the side effects of cancer treatment.
As cancer survivors—in particular those diagnosed earlier in life--“age out” of their disease, their doctors become more concerned about their other medical problems, such as blood pressure and elevated cholesterol. They may not know what has to be done to monitor the long term effects of cancer. They may not even be able to find the information about the original diagnosis and treatment.
We don’t do a good job of disseminating the information about the long term effects of cancer treatment, and we don’t empower patients to have access to the information. There is much we don’t know about the long term effects of treatment, and we don’t do enough research to answer the questions about the potential downsides of our successes.
This message is one of hope. It is also a call to action, about how we need to learn to provide cancer survivors, their families and their physicians accurate information about the long term effects of cancer care. We need to provide the funding for research to find out what we don’t know about the impact of being a cancer survivor, both physically and psychologically.
We can accomplish miracles today that 30 years ago were a gleam in our eyes. But those miracles come with a cost. Given the alternatives, I hope you would agree that these are costs we gladly choose to bear.
At the same time, we can’t ignore that these long term effects exist. It is our responsibility to do more to close the gaps about what we know and what we don’t know, and how we help survivors continue to survive their journey--even as they go on with the rest of their lives free of what once was a fatal disease.
