Gains in cancer fight, but not for young adults

(CBS News) 

We are making progress in the fight against cancer. The American Cancer Society said Wednesday that death rates are going down. Between 2004 and 2008, they dropped 1.8 percent each year for men and 1.6 percent for women. However, CBS News medical correspondent Dr. Jon LaPook reports there has not been much improvement for teens or young adults.

When Caroline Hale counsels young people with cancer at Vanderbilt Children's Hospital, she speaks from experience.

Ten years ago, at age 13, Hale complained of back pain. Doctors said it was from her backpack, but she turned out to have non-Hodgkin's lymphoma wrapping around her spine.

"They hit you with so much poisonous drugs," she said, "so many poisonous drugs, so much chemotherapy, that you just can't help but feel lifeless."

Hale is part of a largely unknown group in the war on cancer. Adolescents and young adults aged 15-to-39 account for more than 72,000 new cancers every year -- seven times more than pediatric cancers. Unlike other groups, their mortality rates have not improved.

"Our peers are suffering," Hale said, "because there's not been medical advances that have trickled down to our age group."

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After surviving brain cancer at age 21, Matthew Zachary founded an organization called Stupid Cancer.

"Young adults don't get cancers that are easily screened," said Zachary. "They get Hodgkin's, they get sarcomas -- usually not detectable cancers. It's not going to the doctor and say, 'Screen me for Hodgkin's,' because there is no such test. By the time you realize what you have symptomatically, it's probably too late or Stage 4."

Report: Cancer death rates declining in U.S.

Survivorship at a young age can mean a lifetime of complications from the treatment. Hale needed hip surgery in high school. Last year, Zachary suffered a stroke.

"What 's your journey been and what have you found out? What has it told you about the system? LaPook asked Zachary.

"I found out that the system is really broken," he said. "That when the doctor says, 'You're cured, go home,' that's not the end of the story. You have the rest of your life to get busy living through the challenges and consequences of not dying from your treatments."

For Zachary, those consequences included losing his career and infertility. But after nine years of trying, he and his wife Jessica had twins.

"When you are 60 years old, you don't care about fertility. When you are 6, you don't really care about fertility. When you are 21 or 28, or you have a child or want to have a child, or your chemotherapy makes you impotent or infertile -- you have the right to live, you have the right to have children, and that should not be taken away from you. This is a unique issue that only faces people in their fertile years, which are largely young adults."

Both Caroline Hale and Matthew Zachary were initially misdiagnosed. Researchers are just starting to focus on the special needs of this group. Up until now, everything has been lumped together with all non-pediatric cancers.

[GailAWest]

I was feeling so very sick and coughing up what looked like tiny pieces of ragged,bloody flesh. I went to an urgent care clinic where the doctor treated me for bronchitis. I remember him saying, "We could do a chest x-ray but you really don't want a chest x-ray, do you?" I was 37 years old and had no other reason to believe that I wasn't healthy. I opted for no x-rays.

Eight months later, I was diagnosed with non Hodgkins lymphoma. My chemo and radiation were brutal but effective. This month, I celebrate 20 years of non recurrence. Not without cost, however. Post treatment effects are now presenting and there is a dearth of information on how to deal with them.

[littleredtop]

Cancer knows not the age of its victims. To imply that younger people are getting the short end of the stick is irresponsible editorializing.

[yoursfaithfullyforever]

um, the point is that young people aren't benefiting from the billions we're spending on cancer research, just as you didn't benefit from the billions we spend on education.

[lichtstein]

As a physician, I found this to be a meaningful story. However, the statement near the end that both individuals were initially misdiagnosed was irrelevant and unnecessary to this story. In fact, it serves to distract the viewer from the main points of the story, and adds unnecessarily to the perception that medical care is generally poor. Very disappointing!

[Smail_Buzzby]

As a physician you should be aware that misdiagnosing is not that uncommon in these cases. No one expects someone so young to have such an ailment and they do not look where they should based on the symptoms. Instead of getting butt-hurt that your profession was bashed (rightfully) you should acknowledge that this is also a problem.

And when you look at how much money we Americans pay people like you it is certainly fair to perceive that our medical care is generally poor. This is more the fault of our politicians and our lawyers than our medical professionals, but you folks are getting very wealthy regardless.

I know people who have been misdiagnosed, and I know people know have been given more cancer meds than they should which nearly killed them (2 people) - do you?

[2xCancerChick]

I wouldn't condemn the entire medical community because that would not be fair but I can tell from first hand as a TWO TIME young adult cancer survivor I was misdiagnosed and my symptoms and concerns were dismissed for EIGHT YEARS by a number of doctors, not just one. I was dismissed as having "IBS" and that I had to learn to live with it. I was basically told, to maybe lose a little more weight, play with my diet, exercise/stress management, maybe try an anti-depressant and eat more fiber. I lived with severe cramping & bloating to the point where my abdomen expanded an additional 10 inches where I looked like I was 9 months pregnant (which is ironic since I had a hysterectomy at age 25 because of my first cancer), massive diarrhea several (average 20) times a day and heart burn & acid reflux where my entire chest felt like it was constantly on fire. The docs knew about my previous cancer history and strong family history of colon cancer, my grandfather had colon cancer and my dad died of it at age 46. The docs did colonoscopies and upper endoscopies and found nothing, but they never once thought to do a CT scan.

Eighty days before I was diagnosed with my second cancer, I started to have constant nausea and painful vomiting. For about two month before diagnosis, I stopped eating solid foods, I basically lived on grape & apple juice and broth (which I hate now!). I became very weak and started to experience severe muscle & joint pain and my blood pressure would bottom out every time I got up from the couch or bent over. By that point the doctors still couldn't figure out what the problem was and still no one thought to do a CT scan. The one doctor had the nerve to say, "I don't know what to tell you" and he wasn't planning to send me for more tests.

Seven days before my diagnosis I started vomiting so much more that I couldn't even keep sips of water down. The last day before diagnosis, the dehydration was starting to make me somewhat delirious and my friend called 911 to get an ambulance to take me to the ER. I finally got my CT scan, they found an obstruction in my small intestines and did emergency surgery. I was told had my friend not called 911, I probably would have died within a few hours, at best maybe a day later. I almost did not make it to my 36th birthday.

Guess what...after they removed the tumor from my small intestines I didn't have any more IBS symptoms....no bloating, no diarrhea, no nausea, no vomiting and no more heartburn or acid reflux.

Eight years of suffering! Eight years! And I had seen over 6 different doctors during that time period...primary care, gastroenterologists, endocrinologists and GYN.


Because of the misdiagnosis by my doctors I had to take a work at home position because I had the embarrassing "IBS" issues and the fact that working in an office had become very difficult. With a work at home position, promotions are very difficult to get....I should be making a lot more money more then I do now. Granted I am not a perfect size 2, but because of the severe bloating the skin on my abdomen got so stretched out, it is disgusting looking, surgery will be the only fix for that and I don't have the money. There isn't much research on small intestinal cancer so the chemo they gave me is what they use for colon cancer but that was basically a crap shoot (no pun intended) because they really don't know if it works. So I probably allowed them to poison me, in which I developed painful neuropathy and chemo brain for nothing. And the statistics for my type of cancer states I have about a 35% chance of living past 5 year...so far I have made it 2 years.

Thankfully, after I finished chemotherapy I moved to an area with two very big research & comprehensive cancer hospitals and now I feel like I am finally being taken seriously.

Like I said, I am not out to bash the entire medical community but many doctors need to become better aware about the young adult cancer community and not to dismiss us because they think we are too young for cancer. I am very involved with young adult cancer community now and I have to tell you, my story is not unique. The diagnosis may be different but many, many, many other young adults have gone through similar experiences like mine. That is not okay!