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Notable News: September 2018

Since smoking is the leading cause of preventable disease and death worldwide, reports about it don’t usually contain good news, but this month they do. The International Association for the Study of Lung Cancer (IASLC) is convening in Toronto, Canada this week for the 19th World Conference on Lung Cancer #WCLC2018, and the importance of screening is being emphasized. Data coming out of the conference shows that CT screening reduces lung cancer deaths by 39% in women and 24% in men. Cdc.gov says the only recommended screening for lung cancer is low-dose computed tomography (also, low-dose CT scan or LDCT). Yearly lung cancer screenings are recommended for people who have a history of heavy smoking, smoke now or have quit in the past 15 years, and are between 55 and 80 years old. So, if you are at risk, make sure you are getting screened! Also, you can find the cdc.gov fact sheet about smoking here.

Another study shows that smoking might not remain the leading cause of preventable disease and death, but something else is going to take it’s place. Right now smoking is the leading cause of preventable cancer among women in the United Kingdom, but that is set to change, reports cnn.com. Thanks to a reduction in smoking and an increase in body weight, obesity will be the leading cause of cancer in women by 2043 if current trends continue. The news is particularly alarming because obesity can also cause some cancers, including breast cancer, to spread. Data collected between 1979 and 2014 was analyzed to determine the projections. Campaigns highlighting smoking risks are credited with the reduction in smoking-related cancers, and researchers are suggesting similar campaigns about the risk of obesity be implemented. More information can be found here. These findings aren’t unique to the UK; this report from November 2017 shows similar trends in the United States.

Obese or not, the quality of your food can increase your risk for cancer, reports medicalnewstoday.com. A study done in Paris shows that regular consumption of food low in nutritional value increases cancer risk. Of the 471,495 participants in the study, 49,794 had been diagnosed with cancer. More specifically, the findings showed men had an increased risk for colorectal cancer, cancer of the upper aerodigestive tract and stomach, and lung cancer. Women showed an increased risk for liver cancer and postmenopausal breast cancer. The research is being used to support the enforcement of a food-labeling system that would clearly state nutritional value of products. Learn more about the study and the food-labeling system here.

More good news comes this month in the form of new information. A study reported in cancer.gov reveals that cancer of the appendix, while usually given the same chemotherapy treatments, is actually quite different from colorectal cancer and other gastrointestinal cancers. The study also showed that the type of gene mutations present in appendiceal cancers could serve as an indicator for a patient’s prognosis. While the study isn’t likely to change practice yet, the information does provide helpful information about a rare cancer, and it indicates a need to develop treatments based on each specific cancer subtype. Much more detailed and technical information about the study findings and appendiceal cancers can be found here.

Finally, there are a couple of stories that happened this month that are worth sharing because they emphasize the poignancy of National Childhood Cancer Awareness Month in a way that little else could. The first is a love story about a couple that recently got married on the grounds of St. Jude’s Children’s Research Hospital. The bride and groom are both childhood cancer survivors who met at St. Jude’s while undergoing treatment 25 years ago. They lost touch over the years, but they were reunited when they both accepted jobs at St. Jude’s, and they rekindled their childhood friendship. Their friendship blossomed into love, and this couple of survivors chose September 1, the first day of Childhood Cancer Awareness Month, as their special day. Read more about the couple’s big day here. Bonus: there’s a video!

The second story is a different kind of love story. It’s about two-year-old Brody Allen. Brody has terminal brain cancer, and he loves Christmas. Brody isn’t expected to make it to Christmas this year so his parents decided to celebrate Christmas early. They put up a tree, and they put up outdoor decorations. Then, their neighbors started to decorate, too. Soon, the whole town was in on it and, earlier this week, Brody’s hometown put on a full-on, life-size Christmas parade in his honor, complete with super heroes and Santa Claus. You can read more about Brody here and see clips from his parade here. Merry Christmas, Brody.

Patient Profile: Jack Bell

Jack Bell

Hepatoblastoma

Today, Jack Bell is a 13-year-old 8th grader. He’s the second of four siblings, and he’s a generally happy kid. While he doesn’t remember much about it, he is also a childhood cancer survivor. Along with Jack, there are more than 400,000 childhood cancer survivors in the United States, and that number is growing. Over the past 40 years, cancer death rates in children have declined 70 percent. However, with cancer still the leading cause of death from disease among people under age 19, a childhood cancer diagnosis is difficult for the entire family.

“It was not a good time. It really wasn’t,” says Rachel Bell, Jack’s mom, remembering his diagnosis. It was late December 2007. She was expecting her third child in a couple of months and preparing for New Year’s Eve guests, but when Jack, an active two and a half year old, took a four hour nap while she was putting away the Christmas decorations, she took notice. There were other things, too. He fell asleep during a shopping trip to Costco, and Rachel’s husband Ed, who was in charge of bath time, had noticed a protrusion in Jack’s abdomen. With a doctor’s visit coming up, they planned to have it all checked out, but they didn’t have a chance. Jack woke up screaming the morning of New Year’s Eve, and he just wouldn’t calm down. They called the doctor’s office, but were advised to go to the emergency room, where Jack was checked for mono, appendicitis and cystic fibrosis. “They kept ruling things out,” Rachel says, adding that the list of possible illnesses kept getting worse. Unable to determine the cause, Jack was admitted for more testing.It was the next day, New Year’s Day, that Jack’s pediatrician told Rachel and Ed that Jack had cancer.

Jack Bell during chemotherapy, age 2

“It went fast from that point,” says Rachel. “You’re in a completely new world.” Jack had stage four hepatoblastoma that originated in his liver and had spread to both lungs. Hepatoblastoma is a very rare type of malignant tumor, and the exact cause is unknown. Rachel says that in Jack’s case, doctor’s believed it was a fetal mutation in which his liver didn’t stop growing when it should have. Jack had surgery that day. He had multiple masses in both lungs and one in his liver the size of a watermelon. That’s what was pushing his ribs out causing the protrusion in his abdomen.

Jack’s chemotherapy started January 9, and they were making weekly trips to the hospital. They were in and out of the hospital a lot during that time. Anytime Jack had a fever they had to go to the hospital. Just as they were adjusting to their new world, they got another surprise. Though she was not due until February 28th, Rachel went into labor February 5th, and their third son, Sam, was born. Within five hours of coming home with the new baby, they were back in the hospital with Jack who had a fever.

“It was chaos,” says Rachel. She had a new born, a two year old with cancer, and Charlie, her oldest, was five and in kindergarten. In addition, Jack was sick from the chemo and losing his hair. After the second round of chemo they learned that the tumors in Jack’s lungs were gone and the one in his liver had shrunk 50 percent, but it was wrapped around a main artery, and Jack needed a liver transplant. “I just wanted someone to tell me that he was going to be okay,” says Rachel, but no one could do that. Rachel and Ed learned that without the transplant surgery, Jack had only a ten percent chance of survival. With the surgery his survival rate went up to 85 or 90 percent.

Jack got on the transplant list on April 1, but there were indications that the cancer was spreading. Jack’s Alpha-Fetoprotein (AFP) numbers were going up. The AFP numbers serve as a marker for liver health. Normal levels are below ten; Jack’s had been 365,000. Doctors were unable to determine if and where the cancer was spreading, but if it was, it could jeopardize the transplant surgery. So, Jack was moved to emergency transplant status May 1. Rachel, Jack, Ed and Baby Sam had to be ready to leave for the transplant hospital at a moment’s notice. They had to have air transportation available, and arrangements for someone to care for Charlie. “We had to wear a beeper and be ready to leave at any time,” says Rachel, who adds that they were willing to jump through whatever hoops they had to or try just about anything to help Jack. “If they tell you to stand in the street and throw glitter in the air and sing a song, you’re going to do it four times a day,” she says.

On Mother’s Day that year Rachel remembers praying for a liver for Jack, but also being acutely aware that his liver would come from another child, and she grieved for the mother that would be losing her child. It was three days later, May 14, at 3 a.m. while she was nursing Sam, that they got the beep. They had a liver and had to leave immediately. Jack was prepped for surgery which went through the night and ended May 15. The doctors discovered that Jack’s AFP numbers had been correct; the tumor was growing, but it was contained to his liver so it did not affect the transplant. The surgery went very well. Jack was a perfect match to his donor, and they were home by June.

Jack Bell after his liver transplant, age 3

Jack, who turned three during his liver transplant recovery, recently celebrated being ten years cancer free. “Thankfully, he doesn’t remember much,” says Rachel adding that Jack does seem to be very in tune with his health for his age.“He does know a lot about his liver,” she says. Like other childhood cancer survivors, Jack will spend the rest of his life being monitored. Every two months he returns to the hospital for blood work. “I am constantly watching the AFP number,” says Rachel, who adds that after transplant surgery, Jack’s AFP went down to 12, and then to two, and that it has held at two ever since. He also takes immune suppressant medications to prevent his immune system from attacking and rejecting his liver, which has happened twice in the past decade. Jack also has a yearly cancer check that looks for late effects of the chemotherapy which are common among childhood cancer patients due to the effects of treatment on growing bodies. Rachel says that so far, any sign of late effects in Jack, which include some hearing loss, are minimal compared to what could have happened. Late effects can be physical, emotional, and/or cognitive and vary in degrees of severity. “It changes your whole attitude about what is important,” says Rachel.

In 2009, the Bell family welcomed their fourth child, Anna Kate. She is nine now. Sam is 10, and Charlie is 15. Even though Jack doesn’t remember much about his diagnosis and treatment, Rachel says it has definitely shaped who he is. Over the years Jack has become very close with his doctors and nurses and considers them part of his family. He even says that one day he’d like to be a doctor who specializes in the liver. “It’s important for these kids that survive to know how lucky they are,” says Rachel. “There will be a day he understands how serious it was and maybe he’s starting to realize that now.”

Coincidentally, while Jack was recovering from his transplant in May 2008, the United States Senate declared September 13 National Childhood Cancer Awareness Day. Later in 2012, September was made National Childhood Cancer Awareness Month. The proclamation states, “This month, we remember the young lives taken too soon, stand with the families facing childhood cancer today, and rededicate ourselves to combating this terrible illness.”

From left transplant surgeon, Dr. Frederick Ryckman, Survivor Jack Bell, Rachel Bell, and oncologist, Dr. Emad Salman. Rachel says, “I love any chance we get to be with these two docs!”


Sources:

https://www.cancer.gov/types/childhood-cancers

https://www.acco.org/childhood-cancer-awareness-month/