Advice From Cancer Experts On What To Expect When Cancer Returns
By: Marilynn Marchione
Judith Bernstein meets with Dr. Henry Fung at the Fox Chase Cancer Center in Philadelphia. Her husband, Arnold, is at right. Bernstein has had eight different types of cancer over the last two decades, all treated successfully. About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent. (AP Photo/Matt Rourke)
Second cancers are on the rise. Nearly 1 in 5 new cases in the U.S. now involves someone who has had the disease before.
When doctors talk about second cancers, they mean a different tissue type or a different site, not a recurrence or spread of the original tumor.
Judith Bernstein of suburban Philadelphia is an extreme example. She has had eight types over the last two decades, all treated successfully.
“There was a while when I was getting one cancer diagnosis after another,” including breast, lung, esophageal, and the latest—a rare tumor of her eyelids, she said. “At one point I thought I had cancer in my little finger.”
About 19 percent of cancers in the United States now are second-or-more cases, a recent study found. In the 1970s, it was only 9 percent.
Over that period, the number of first cancers rose 70 percent while the number of second cancers rose 300 percent.
Strange as it may sound, this is partly a success story:
More people are surviving cancer and living long enough to get it again, because the risk of cancer rises with age.
Second cancers also can arise from the same gene mutations or risk factors, such as smoking, that spurred the first one.
And some of the very treatments that help people survive their first cancer, such as radiation, can raise the risk of a new cancer forming later in life, although treatments have greatly improved in recent years to minimize this problem.
Psychologically, a second cancer often is more traumatizing than the first.
“I think it’s a lot tougher” for most people, said Julia Rowland, director of the federal Office of Cancer Survivorship. “The first time you’re diagnosed, it’s fear of the unknown. When you have your next diagnosis, it’s fear of the known,” and having to face treatment all over again.
Robert Ulrich, 58, a contractor and building inspector in Wasilla, Alaska, said that when doctors told him in 2013 he had advanced colon cancer, two decades after he had overcome Hodgkin lymphoma, it was like “they put a time stamp on your existence … it makes your head spin.”
He is making end-of-life plans while fighting the disease with aggressive chemotherapy.
“My outlook on it is, I got 30 years out of the first go-round which gave me an opportunity to raise my family and enjoy my bride. So whatever time I get forward here I consider free time,” he said. “You hope for the best and you prepare for the worst.”
Imagine what it has been like for Bernstein, 72, the Philadelphia-area woman who has had skin, lymphoma, breast, two types of lung, esophageal, thyroid and now the eyelid cancer, a form of lymphoma.
“I’m not going to tell you I’m some uber human being,” Bernstein said.
She went to a psychiatrist after one diagnosis and “spent four days very upset” after the latest one.
But she said that exercising has helped her feel well through treatments, and that having endured many tragedies among her friends and family has given her resilience.
“Some people just can grieve and deal with it” when faced with challenges like cancer, she said.
“She is so upbeat,” said Barbara Rogers, a nurse practitioner at Fox Chase Cancer Center who has treated Bernstein for more than a decade. For most patients, “it is harder the second time around, or third or fourth … like, ‘Oh, God, not again.'”
Medically, second cancers pose special challenges.
Treatment choices may be more limited.
For example, radiation usually isn’t given to the same area of the body more than once.
Some drugs also have lifetime dose limits to avoid nerve or heart damage.
“The body has a memory for the radiation or chemotherapy” and can’t endure too much of the same type, said Dr. Alan Venook, a colon and liver cancer expert at the University of California, San Francisco, who treats Ulrich, the Alaska man.
A second cancer means doctors need to assess genetic risk to the patient and possibly the family, Venook said.
“We’ve failed if a woman who had a BRCA1 mutation and had breast cancer develops colon cancer,” he said.
The gene mutation means she should be monitored and screened often enough for other cancers to have any precancerous colon growths removed, he said.
Experts have this advice for cancer survivors:
Have a formal survivorship plan, a blueprint for the future that includes a detailed summary of the treatment you received and what kind of monitoring is needed.
“Anyone who’s had a first cancer needs to understand what kinds of symptoms they need to be alert to and what kind of medical follow-up” they need, said Elizabeth Ward, an American Cancer Society researcher who authored a recent report on second cancers.
Don’t neglect screenings for other forms of cancer besides the one you were treated for. Make sure to get any recommended tests such as colonoscopies, mammograms or HPV or Pap tests.
If you get a second cancer, “take a deep breath,” Rowland said. Treatments improve every day, and there are more resources, including social media, for support, and doctors are more used to treating cancer more than once.
“No one’s giving up on you,” she said.
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