10 Things You Need to Know About Young Adults With Cancer
1) CANCER IS KILLING US
Surprise! Cancer is the single most fatal disease for young adults. And, if you leave out the big three — murder, suicide and unintentional injury — cancer is the leading cause of death, period.
2) THERE ARE MORE OF US THAN YOU THINK
Nearly 70,000 young adults between the ages of 15 and 39 in the US alone are diagnosed with cancer every year. That’s close to SEVEN PERCENT of all cancer diagnoses.
3) YOUNG ADULTS ARE THE MOST LIKELY PATIENTS TO HAVE A DELAYED DIAGNOSIS
Between our personal feelings of ‘invincibility’, rare visits to the doctor and low clinical suspicion once we get there, it can take us much longer than other patients to find the doctors we need to help us on the other side of our diagnosis.
4) IT’S A ‘NO-MAN’S LAND’ BETWEEN PEDIATRIC AND ADULT ONCOLOGY
Where SHOULD you go if you’re a 26-year old with Ewing sarcoma or a 17-year old with testicular cancer? We have no medical “home” where both the treatment and the environment are geared to our needs.
5) YOUNG ADULTS ARE THE MOST LIKELY TO BE UNDER- OR UNINSURED.
We’re too old for our parents’ insurance, too young for Medicare, and may not yet be in a jobs with great health benefits. Our income level may pit premiums against minor priorities like… oh, food or rent. And inexperience in the system can cause us to miss available assistance.
6) YOUNG ADULTS ARE THE LEAST REPRESENTED GROUP IN CLINICAL TRIALS
Less than 2% of young adult patients are on clinical trials, and little to no research focuses specifically on us. About 90% of us are treated in the community — AKA: The Land of NO Trials — which doesn’t improve our odds.
7) SURVIVAL RATES IN OUR AGE GROUP HAVE REMAINED NEARLY FLAT FOR 30 YEARS
Kids and older patients have seen steady improvement in the survival rates of the last three decades thanks to advances in treatments, prevention and screening. We haven’t.
8) WHEN WE FINISH TREATMENT, WE STILL HAVE A LONG WAY TO GO
Finishing treatment is like being pushed off a cliff. Without a parachute. We want to be happy and “normal” again, but instead, we may be left facing big question marks: physical or cognitive side effects, fear of recurrence, massive debt and a newly forged, not-quite-stable identity.
9) WE WANT TO TALK ABOUT SEXUALITY AND FERTILITY
We’re forming our sexual self and are in our prime childbearing years, so we need to talk about these issues even if they’re not on our radar yet. Our sexual issues could stem from the disease, treatment, medications, stress or even our healthy partner. The fertility decisions we make now — sometimes with only a small window of opportunity — will affect our family and us for the rest of our lives.
10) OUR SUPPORT NEEDS ARE DIFFERENT FROM OTHER PATIENTS
We don’t fit in with most support groups. We want to know other patients whose happy-hour chatter might consist of how to date while bald and beefed up on ‘roids; whether or not we can have kids; and scheming to stay in school or at work just for the insurance. Oh, and whether we’re going to live or die.
—- Statistics from Adolescent and Young Adult Oncology Progress // PlanetCancer.org ((These people are amazing))
Wow, I can't believe you went through so much! I had to go through cancer with out a mother as well, it's not fun in the slightest! But I guess I had my dad and he was by my side every day, for about a year.. (I was 4 and have been in remission for over 12 years). I honestly hope you stay in remission for ever. Cancer is so horrible and it's always the best people who get it.. I wish you good luck in everything <3
Sometimes, especially when you’re sick, you just want to curl up with your mom, right? :) Thankfully, I have my sister and a best friend I couldn’t have done any of this without. I’ve made fantastic NEW friends and hopefully, I can finish this up soon enough. Congrats on your remission and thank you for your great message. <33 Mary
Currently, I have an appointment on October 31st to see Dr. Dillon at Harborview to discuss when my teeth come out. All my friends say to wait until after Thanksgiving, but the truth is, I don’t think it’ll matter anymore.
Since the entire process is going to take between nine and twelve months? I’d rather just get it done and over with. This is the last thing I need to do to put all this cancer business behind me. I had a clean scan last week (OMGYAY!), which means that if I can keep THAT up over the next (toothless) year, then I really will have beaten this thing.
I’m a survivor.
I just can’t keep smiling (literally) with nasty teeth. I have one broken already, and others are going faster than I can get into the doctor. Thankfully, they don’t hurt nearly as much as they could. There will be photographs as soon as I can muster up the courage. It’s embarrassing. As much as I know that this isn’t because I just refused to brush or floss (since that wasn’t the case at all), it’s still awful since people put pretty teeth in such high regard.
But it’s okay. This one last thing and then I’m done… even if it takes a year and costs $30,000. I already have the first $5000.