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Young Adults

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This week is special to me. I was diagnosed as a young adult and it means a lot that there is a week to recognize this incredibly underserved population. That’s right, I said underserved. Often we think of underserved populations as those with significant socioeconomic challenges or other obstacles that force them to face odds unlike the general population. But I believe firmly that anyone who is not benefiting from what we know, is actually underserved. Any group or subset of our society that is not treated equally, that is not realizing the same gains or advances, and not dealt with fairly can be underserved.

This week aims to recognize the unique challenges and needs of this population and I am proud to celebrate while remaining determined to positively impact this population.

When colleagues and friends of the LAF presented staggering data to us several years ago that showed no virtually no improvement in survival for those between the ages of 18-40 (and actually some negative impact in certain ages) over the last 30 years it was eerily apparent that this was an underserved population. When we presented the date to the National Cancer Institute (NCI) and asked them to investigate this further with us, we told them this population had been marginalized. Let me be clear. For some in this age range, the chance of surviving their cancer diagnosis five years is lower today than it was in 1975. Yes, lower. How can this be? I asked myself the same thing.

Young adults happen to be the most uninsured and underinsured populations in our nation. They tend to be diagnosed late. Their tends to be an invincibility among this group as well as a very low level of clinical suspicion among providers. There are also biologic differences which LAF is now attacking through unique research efforts so that we can understand what the biologic differences may be.

When we partnered with the NCI in a historic government and non-profit partnership to produce a strategic plan for reversing this trend we discovered how truly underserved this population is.

Think for a minute about this, there are instances today where survival rates for someone who is 10 years old and someone who is 30 years old and who are both diagnosed with the exact same type of cancer have a different survival rate of more than 50%. In other words, for some types of cancer the survival rate for a 10 year old is 90% and it is less than 40% for a 30 year old. That is unacceptable.

We are pedaling hard to better understand the issues that contribute to this and ultimately solve the problem. This is a personal issue for me. I am passionate about it and this week reminds me that we have a long way to go, but we will get there and having an awareness week truly does help. It shines a light. And it forces people to acknowledge and remember.

  • Katie

    Doug, I couldn’t agree with you more! I was 25 when I found out I had liver cancer!
    Thank you for Everything that you do and LAF does!!
    Celebrate the week…
    ~ Always,
    KT

  • Judy

    My son passed away from acute lymphoblast leukemia at age 27 after a bone marrow transplant.Since then, I have dedicated myself to advocate for young adult cancer awareness. I have written a couple of articles in the local paper and I am now a committee member for patient services and advocacy for the Leukemia & Lymphoma Society Central CA Chapter in Fresno, CA. My family has joined fundraising events all year. We are currently active with Team In Training. I want to do even more to help. Any suggestions? FYI: There were six young adults (in their 20′s and 30′s) who passed away from a blood cancer within a 6 month period in Fresno about the same time my son did!!! Sincerely Judy

  • http://www.masskickers.com Eric Galvez

    Thank you for posting that Doug. These issues really need to be brought to the forefront.

  • Keisha D.

    Oh btw, yes, thank you. It was very late when I posted my last message. I am still having after effects of Chemo Brain.

    I was 36, in Nov. 06, when I was fianlly diagnosed with Leukemia AML. I went almost 7 months with misdiagnosis.

    The problem was, I was a triathalete and ran 5-6 miles a day when I started feeling bad. I felt like I wasn’t getting enough air in my lungs, and I had an ear/sinus infection that I couldn’t get past.

    They sent me on a goose chase…5 rounds of antibiotics, 2 visits with MD, 6 or + visits with ENT, 1 hearing and balance test, 3 visits ER, 7 or + visits to Allergy Clinic, 1 visit to oral facial, finally 1 visit to Hemoc.

    The point is, intially, I didn’t fit the “image” profile. Then even as my condition appeared to deteriorate, ex: significant weight gain of 31 lbs in 2 months, sever brusing over my body, sores on my tounge and gums, rare occasional nose bleed, itching w/rare occasional petekia present– they thought I literally had a psychological problem. (Quite honestly, I was beginning to think I had Munichousin, b/c they couldn’t find anything wrong.) They even sent me off for drug testing.

    On my last visit, before the referral to Hemoc, I threw a fit! I called in the office manager, and the attending. I told them I was not crazy, or on drugs, that I know my body, and something is not right, and I wanted answeres or I would seek legal counsel. (Awe, the joy of dealing with a county hospital.)

    The attending came back and told me that my wbc was low, but nothing alarming, let us wait a couple of weeks and see where it goes. I am sure you can imagine the look on my face. I told him at this point it was time for a referral, that was on a Friday. I got the referral, and made them expedite an appointment for me on the coming Monday.

    I submitted my blood for lab testing. Less than an hour, the doctor returns with tears in her eyes and tells me, I have Leukemia. I sat stunned, but oddly releived. (if Hemoc didn’t find anything, I was going to go find a Psy. Dr.)

    Next, entered my newly appt case manager, Jill. She told me I was going to be admitted immediatley. And, blasts were present at 6%; and they thought I might have PML, which is 95% cureable. Pathology should confirm, shortly.)I was so happy to hear the odds.

    The next morning, I was admitted into the hospital for a month. My blasts had already jumped to 19%. The diagnosis, AML, the rate of survival, 40%. I was told I was a rare find. They told me most with AML come in via the emergency room, already bleeding profusly, and consumed with cancer. Plus, my age??

    I made it, but very sadly, 2 of my 19 yr old friends didn’t.

    I will tell you during my dark moments I thought of Lance. How someone could beat brain, lung and testecular cancer, then go on to win the Tour de France, not once, but 6 more times. I kept sharing this with my hospital friends, to help them thru their dark moments, like when my brain cancer friend, when the dr. tell him, this chemo is not working, let’s try something else.

    So, yes, definate need for more advocation!

    On the funny side, I will share with you what I used to say when someone would come in, and without intention, make me think a little less hopeful…I would just say.. you know if Lance Armstrong can beat Brain, Lung and Testecular cancer, then go on to win the Tour de France 7 times, I’m from Texas (pardon the explicitive), but I got the balls to beat this thing!

    This usually ended with laughter, and it was the last negative/pitty party comment I heard from them. From then on, they joined in my train of thought, I am a fighter, and I will beat this thing!!!

    Sorry this was so long…But I wanted to reflect, your presumption is not off the mark, in fact it right on!

  • Keisha D.

    Oh, one last thing!

    During cancer treatment, I fired two doctors. i told them just because I am a poor college student, does not mean that I am not smart.

    I am now pursuing a degree with the intention in medical advocacy law. I want to help those, who don’t know there rights, and help those who don’t speak the language, understand, they too count!

    So much work left on informing the hospital and staff of the perspective from a cancer patient perspective.

  • MAC

    Doug, Thank You for posting this comment. My 20 yr old son, J. was complaining of horrible back pain and visited 3 doctors who gave him Vicodin before the 4th one took a blood test and saw that his protein levels were high. She didn’t have enough information to make a full diagnosis but knew that something was wrong. The first doctors kept saying he must of hurt his back lifting weights. He kept saying he did not hurt his back, but was having pain in his back. They didn’t listen to him and did not take him seriously. When I asked several other doctors what they would do if a healthy 60 year old male complained about severe back pain they all answered they would test for prostate cancer. Yet, here was a healthy 20 yr old saying the same thing and they never thought it may be testicular cancer…which it was. Stage 3…spread to lungs, lymphnodes, spine and serious tumors in two main veins. Since March 5, 2008 he has had two surgeries, two rounds of chemo, 28 days in the hospital and will go in tomorrow for his third round. He will have a 4th round after that and then we will see what’s next. He is positively fighting.

    We have both read Lance’s book–Thanks Lance!!

    BTW-when J. was diagnosed he told me that during an annual physical, when he was 16, the doctor noticed an abnormal growth and told him that they would keep an eye on it. Unfortunately the doctor never told me – the adult parent. J. went onto college and never saw that doctor again and never told me either.

    This is why it’s important to educate doctors and parents. I’m not sure how to help with this, but very much want to play a part in helping spread the word.