Beating Cancer as a Kid, Only to Fight It Again as an Adult

June 1, 2009— -- For 32-year-old Casey Quinn of Minneapolis, Minn., cancer screenings have become a regular routine.

"I'm so used to it being an annual part of my life," he said.

Quinn is a survivor of childhood cancer. At the age of 17, doctors diagnosed him with his first cancer -- a collection of tumors in his colon. The decade and a half that followed became a reoccurring fight against cancers that surfaced through subsequent screenings, a battle that meant multiple surgeries, harsh treatments and the loss of his right leg.

Despite the fact that Quinn has not always received good news during his screenings, he said that the decision to keep monitoring his cancer is a simple choice.

"I would certainly recommend always having a checkup," he said. "I think a lot of it has to be in your own hands."

Quinn's philosophy, however, may be different from that of a number of childhood cancer survivors like him. Research presented Sunday at the annual meeting of the American Society for Clinical Oncology revealed that many survivors of childhood cancers may not keep up with recommended screenings for breast, colon and skin cancer as they grow older.

The finding came from an analysis of the Childhood Cancer Survivor Study, a comprehensive, long-term follow-up study of childhood cancer patients.

Specifically, among childhood cancer survivors at increased risk for a second cancer, only 11 percent reported a colonoscopy within the recommended five-year period. Only 30 percent said they had a mammogram within the recommended one-year period, and just 27 percent reported a skin exam.

The figures are especially troubling because children who are treated for cancer -- especially when radiation therapy is involved -- face an increased risk of cancer later on in life.

Lead researcher of the new study Dr. Paul Nathan of the Hospital for Sick Children in Toronto said, "We were surprised to find that many survivors of childhood cancer are not following surveillance guidelines that may detect new cancers during their earlier, more curable stages."

Nathan said part of the reason behind the finding may be that the family doctors who see these patients may not have a complete knowledge of how childhood cancers survivors should be followed.

But Dr. Aziza Shad, director of pediatric hematology/oncology and director of the Cancer Survivorship Program at the Lombardi Cancer Center at Georgetown University Hospital in Washington, D.C., said that while this may be the case, the patients themselves may also avoid these screenings.

"I think there are many reasons for it," Shad said. "There is a lot of trauma in treatment, and when I say trauma I'm saying emotional trauma as well as physical trauma. [Screenings] just bring back bad memories. ... They want to feel a sense of normalcy."

Regardless of the reason, the finding has big implications. Shad said there are currently 270,000 childhood cancer survivors living in the United States. She said that past research has shown that a majority of those treated for childhood cancer in the 1970s and '80s still live with the effects of the treatment.

"Seventy-five percent of those [patients] live with some kind of a chronic ailment," she said.

The following pages represent three stories of childhood cancer patients who paid a high price -- in the form of additional cancer and side effects -- for the treatment they received as children. But for each of these survivors, continued screening and treatment likely also saved their lives and allowed them to live as normal lives as possible.

As a result, Krauel received more chemotherapy, as well as radiation to her brain and spinal column.

The leukemia went into remission and has never recurred since then. But the radiation used to treat her leukemia led to the development of the skin cancer melanoma along her scalp and spine at the age of 14, a cancer for which she would require surgery.

At the age of 18, she developed thyroid cancer, another malignancy likely linked to her prior cancer treatment. Surgeons removed the half of the gland that housed the tumor, but in 2007 the cancer returned and she had to have the rest of her thyroid removed to eliminate it.

In 2007, doctors also diagnosed Krauel with inflammatory breast cancer, a rare but aggressive form of the disease. She received treatment for this cancer and is now in remission from it as well.

Now 31 years old, Krauel said her fight against cancer has not been an easy one. In addition to cancer, she has faced cataracts and osteoporosis as consequences of her treatment.

"There is a ton of stuff that creeps up on you that you would never think as a younger person you would have to fear," she said.

But despite this, Krauel said that she does not regret having the life saving treatment she received as a child.

"It saved my life, so I am not condemning anything," she said. Indeed, Krauel is preparing to celebrate her seven-year wedding anniversary in September. She has two children, 5-year-old Jake and 3-year-old Emma. Both, she said, are healthy.

And just as her life has changed, so too, she said, have her reasons for seeking continued cancer screening and treatment.

"It was different then because I was a child, and I had my parents making decisions for me," she said. "Now I have to make these decisions for the sake of my husband and kids. So it was a lot different before because I just had to survive for myself."

Krauel regularly attends the survivorship program that Shad leads at Georgetown University. She said that she would recommend to any childhood cancer survivor that they get in touch with a similar clinic.

"Until the mid-2000s, I think a lot of people didn't know that they really needed to follow up, because I don't think that we were told," she said. "I also think that a lot of people don't get follow-up treatments because they don't have the right insurance or they don't have it at all."

Shad said that given the option, she finds that most survivors of childhood cancer would make the choice to opt for sometimes difficult treatments to fight the disease.

"I have three patients right now ... all of them have second cancers," she said. "Not one of them has said to me, 'I don't want treatment.' They feel like they beat it once, they can beat it again.

"They have so much more to live for now."

Krauel added, though, that she hopes researchers "will be able to do more research on pediatric chemotherapy and radiation so other childhood cancer survivors don't have to experience so many late effects and are able to live a more normal life.

"When they ask me how I do it, I just tell them that I keep my head up and keep putting one foot ahead of the other."

"Sort of the dark side of cancer is that you are not given any good choices," said Kathy Riley said. "Peter was a brilliant little 5-year-old with a great future ahead of him. We knew the effect the radiation could have on his developing brain.

"It was the choice of a different life than we had imagined versus most certainly death."

The Rileys opted for the life-saving treatment, and as feared, the radiation to Peter's brain had the effect of permanently impairing his mental function.

"Intellectually he is not the same child that he would have been," Kathy Riley said. "Some of the higher level reasoning and critical thinking skills, he just doesn't have that."

But this side effect was not the only detrimental effect from treatment that Peter would experience. About 10 years after the radiation treatments, he developed a second brain tumor that was likely a result of the irradiation.

"It was the same kind of tumor that they saw years later after the bombings of Hiroshima and Nagasaki -- it was essentially radiation poisoning," Kathy Riley said.

Fortunately, this tumor was benign and could be removed through surgery. But Riley said that hearing from a doctor that her son would possibly have a second experience with cancer was a major blow.

"It was heavy. It wasn't devastating; the first time you go through it, it is completely devastating because it is so frightening," she said. "It was almost as if he was paying a price we didn't want him to for a cancer."

Shad said that for parents like Kathy Riley, the realization that life-saving treatment often comes part and parcel with significant side effects is a grim one.

"I think it takes a while to sink in," she said. "They are usually very upset about it ... but those that realize that there are these side effects also feel like they don't have a choice. It's an awful place for parents."

Peter is now in remission from cancer. He has to have MRI scans for the rest of his life; the type of tumor that most recently occurred in his brain, though benign, is known to recur. Peter also has some hearing loss, and his thyroid must be monitored for unusual growths. His treatment has affected his ability to find employment, and he may never live on his own.

Still, Kathy Riley said the treatment was the only reasonable choice.

"Given the chance to do it again, we would do radiation; we would do it again," she said. "Absolutely, we would. ... It's the only course that we could have taken because it was the only proven cure at the time."

And the Rileys have used their experience to help others. Kathy Riley co-founded an organization called We Can that helps other parents of children with cancer through treatment decisions. It is an organization in which Peter, now 21, plays an active role.

"I've always wanted to help kids, to help someone who maybe went through almost the same thing I did," he said. "At first it was difficult. Now I think to myself, 'I'm not like everyone else, but in a way I think of myself as being like everyone in many ways.'"

Surgeons originally believed that they could rid Quinn's body of cancer with surgery alone. But shortly after he began seeing doctors for treatment of his colon cancer, he noticed a pain in the back of his pelvis. A subsequent medical scan revealed yet another cancer, this one in the bone of his right hip.

"That was pretty frightening," Quinn said. "That's when it turned from just colon surgery to, 'OK, now it's really bad.'"

He now faced surgery, radiation and a strong chemotherapy regimen. Recalling the chemo, Quinn notes, "It was nasty -- really, really nasty side effects." The 6-foot-3 Quinn went from 150 pounds to 115 pounds over the course of his treatment.

Meanwhile, the surgery to remove the bone tumor in his hip left him with severe damage to his sciatic nerve, which extends down the right leg. While the surgery to remove the cancer from his hip was a success, Quinn said the pain in his foot and leg from the damaged nerve was nearly unbearable.

But the cancer, at least, seemed to be behind him. Quinn graduated from high school in 1996, and life seemed to return to normal as he headed to college. But he still checked in at the Mayo Clinic periodically for routine checkups. And it was during one of these checkups, in October of 1998, that his next battle with cancer began.

"That one showed a spot in my right heel, on the same side as the tumor had been in my pelvis," he said. "I'll never forget the feeling of that biopsy in my heel."

The biopsy came back positive. And this time doctors felt that the location of the tumor in his bone, combined with the low likelihood that chemo would eliminate the cancer a second time, necessitated a more radical approach. They told Quinn his best chance involved amputating his leg.

At first he said no. "I was just reacting -- overreacting maybe," he said. "It was just the most shocking thing in my life.

"The next day, some switch went off in me and I decided, 'Of course I have to do this.'"

Doctors took Quinn's right leg below his knee to prevent the cancer's spread. For years, Quinn was cancer free. But in 2007 Quinn once again began experiencing unusual symptoms in the form of what he believed to be panic attacks.

He saw a psychiatrist, who agreed that panic attacks were to blame for what Quinn calls "mad rushes" that he would get. His psychiatrist put him on anxiety medicines, which worked at first. But then the attacks got worse.

The true answer to his condition came when he visited his oncologist and had an MRI scan of his brain.

"Bam, there's a golf ball-sized tumor in there," he said.

In an operation that Quinn refers to as "round six" in his fight against cancer, surgeons at M.D. Anderson Cancer Center in Houston, Tex., delicately removed the areas of the tumor that they could without damaging critical areas of his brain. However, they were only able to eliminate 85 percent of this tumor. And while radiation and chemotherapy initially kept the remainder of it in check, Quinn said that his most recent scans suggest that this tumor may be growing once more.

"So that was round six, and I'm waiting for round seven," he said.

But along with the repeated encounters with cancer, Quinn said he also gained insight into his condition. He was eventually diagnosed with Li-Fraumeni syndrome, a condition which dramatically increased his risk of developing a host of cancers. But while he said that based on his experience, he would recommend that any childhood cancer survivor keep up with regular screenings.

"I either go in and have the checkup, or I live my life not knowing. The prior of these two leaves me with much more comfort," he said.

"If [the results] are good, I go on living my life," he said. "If it's bad, I start treatment and have a much better result."

MedPage Today's Michael Smith and the ABC News Medical Unit contributed to this report. To read stories from MedPage Today, click here.