BY GUEST BLOGGER | AUGUST 19, 2013
Words cannot describe how emotional I am that my internship at CUREis at an end. But hold on, this isn't a farewell blog.
Yes, I will be leaving to start graduate school at the University of North Texas where I will be pursuing a Masters in journalism. No, I'm not done with CURE; at least that's what I hope.
Since my full-time role is up, I would like to share with you a little about what I've learned the past 10 weeks.
I definitely think it's safe to say that my knowledge of cancer has gone up just a tad. I have more of an idea of what cancer is now than when I started at CURE.
One important thing I learned is that cancer doesn't have rules. It's a free game. Anything can happen to anyone at anytime for no apparent reason. Also, if your race, age or other characteristic gives you a low risk of cancer, it doesn't necessarily mean you're immune to it; something important I learned from speaking with Lindsay Giannobile.
Now, I'll talk about a few of the interesting projects I worked on at my time here. Some were very interesting, and even a bit concerning.
One significant project I worked on was the patient guide on metastatic breast cancer due out later this year. Another subject I found eye-opening was about how infertility is a side effect of chemotherapy or radiation therapy. One of my final journalism projects during my undergrad study at Ole Miss was on a story I did of a couple I went to church with that did four in vitro fertilization attempts before they were able to conceive. Before that project, I didn't realize what a hardship it was for women unable to get pregnant naturally. I can only imagine what that must be like for women undergoing cancer treatment, something I've learned since I've been here.
Oh, and one of my favorite assignments was on sexual dysfunction, a side effect of prostate cancer treatment. This will be featured in a prostate cancer article coming up later this year. I read about everything from erections to penis pumps. Yes, I know this is very common in prostate cancer patients and needs to be discussed, but yikes! My mom called me that day and asked how work went. I told her, "I read way too much about the penis."
Then there were those touching stories; stories about caregivers, how the little things made the biggest difference, determination and acceptance. It was those stories that encouraged me to look for hope in negative situations.
The list goes on and on.
Now for the CURE team. They are some of the smartest, funniest, most determined people I've ever had the pleasure of working with. For the first time in my life, I can honestly say that I like everyone I work with. Leaving them is definitely the hardest part of ending my internship.
I'm hoping after I'm done with school, I will continue in the path of health and science; whether it is in writing, public relations or marketing.
I still have a lot to learn and a lot to say, so it's safe to say that you will be seeing me around. Goodbye...but not really.RELATED POSTS
BY GUEST BLOGGER | AUGUST 13, 2013
Too young to date, too young to wear make-up, too young to dress like that, too young to get married, too young to see an R-rated movie; any of those ring a bell? Now let's say you were told you were too young for cancer.
Lindsay Giannobile says you're never too young for anything in the world of cancer; anything is possible. She is proof of that. Her long road to becoming a mom with metastatic breast cancer wasn't her only struggle with cancer. In fact, she had struggles even before her initial diagnosis.
In 2009, after completing a half marathon, Lindsay discovered a lump in her breast during a self-exam. "It was exactly what they say breast cancer feels like; a small hard rock," she says.
Lindsay immediately went to get it looked at, and a "quick ultrasound" was performed. The doctor told her it was nothing and, at 27, she was too young and active for breast cancer.
About 5 percent of breast cancers are diagnosed in women younger than 40, but just because something is rare, doesn't mean it's impossible.
Lindsay was told to come back if anything changes. She wasn't satisfied, but kept an eye on it.
Four months later, Lindsay discovers another lump in the same breast, and went back to the same facility to be examined again. She told the doctor, "I don't feel right about this."
Again, only an ultrasound was performed. No mammogram, no biopsy.
"They literally told me 'Lindsay, you can't keep coming back here. You're only 27, this isn't cancer. It's nothing to worry about'," Lindsay says. They told her to come back in a year if the lumps were still there.
"I felt like I did everything I could do, since I had the lumps checked out twice in a few months. I thought 'If a doctor is telling me nothing, clearly it's nothing and I'm overreacting.' At the time, I didn't think to go get a second opinion, and I really wish I had," she says.
Yes, women can get non-cancerous lumps, but a biopsy is the only way to rule out that a lump is cancerous.
Steven Sugarman, a medical breast oncologist at Memorial Sloan-Kettering Cancer Center in Commack, Long Island, who was not involved in Lindsay's care, encourages patients to seek a second opinion if they feel their physician isn't taking their concerns seriously. It's also important to look at "reputable sources" for information and advice, he says.
It wasn't until a year later that Lindsay and her husband, Tony, decided to get a second opinion. This time, Lindsay went to the James Cancer Hospital at The Ohio State University Medical Center. Within a week, ultrasounds, biopsies and mammograms were performed.
"We got a pathology report that had cancer written all over it," Lindsay says. Lindsay had stage 3 HER2-positive breast cancer, and within a year, the cancer spread to her bones.
Even if you're not a healthcare professional, it's perfectly normal to question a doctor. Lindsay has learned that since you know your body better than anyone, it's important to fight for yourself. "Be your own advocate," she says.
That doesn't mean that anything unusual is automatically cancer. It may be something else, or it may in fact be nothing--something people who have successfully been treated for cancer must frequently consider. When every little ache or cough brings up a fear of recurrence, the physician should respond to each worry with understanding.
"The role of the oncologist in caring for a very concerned patient is to listen carefully to the patient's complaint and order the appropriate tests to determine if the problem is a significant one that requires a specific treatment," says Sugarman.
"If the complaint turns out, after full evaluation, not to be serious, then the physician should prescribe the best plan, give the patient instructions on what changes to look for that would require further investigation, and provide words of reassurance and comfort to the patient."RELATED POSTS
BY GUEST BLOGGER | JULY 17, 2013
We've all seen cancer slogans on t-shirts, buttons and baseball caps. If you've received a cancer diagnosis, odds are good you've also heard them from your family and friends.
My first go-round with breast cancer, I wore my hot pink Cancer Sucks t-shirt with pride to my chemo treatments. A few years later, life is more challenging with my metastatic diagnosis and trying to live One Day at a Time.
Two weeks ago, I attended my uncle's funeral; after the service, we were traveling to MD Anderson for a PET scan and doctor's visit. During the service, I was looking at Uncle Bill's children, grandchildren and great-grandson.
"Hmmm.....let's see....if I was 31 when Henry (my son) was born, I'll be 36 when he starts kindergarten. If I'm 49 when he graduates high school, how many years until I could be a grandma?"
There I was, sitting second pew, when a familiar dark cloud slithered into my thoughts. "Will I live long enough to meet my grandchildren?"
My mom will tell you no one knows how much time they have; she could get hit by a bus tomorrow. While that may be true, some of us are standing in the middle of the road, making us more likely to get hit by a bus than the average person. Most people assume they'll live a long and healthy life, but when you're in my boat, it takes concerted effort to make that assumption.
It's been almost a year and a half since I was first deemed incurable. Henry was only a few weeks old and completely dependent on us, but I was the one that needed him. Even when the dark thoughts felt all consuming, I had to Put One Foot in Front of the Other and go fix him a bottle! He continues to give me purpose daily, making it impossible for me to hide under the covers.
My goal is to Enjoy Life in the Now, which is much easier said than done. Most days I choose to keep busy with being a wife and mom – balancing trips to the grocery store and play dates, with oncologist appointments and medicine side effects. I am still responding to my current medication, giving me 12 weeks until the next trip to Houston. Until then, we'll be enjoying summertime in the backyard and trying to stay cool in the Texas heat, just like a "normal" family would.
From now on, when the black cloud sneaks into my thoughts, I am going to follow Henry's lead. At 18 months old, my son doesn't look at the big picture or know what he'll be doing next year or even this afternoon. Every morning, Henry wakes up smiling and ready to tackle the day by running around like a wild man, terrorizing the dogs and trying to jump off the back of the couch.
I can't think of a better example of Live for Today, can you?
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.RELATED POSTS
BY GUEST BLOGGER | JULY 11, 2013
In 2010, Lindsay and Tony Giannobile returned from a vacation in Italy, their last "hurrah" before starting a family, but the life-changing news they received wasn't what they were planning for.
At 28 years old, Lindsay received a diagnosis of stage 3 HER2-positive breast cancer. Listening to Lindsay talk about her struggles and determination to not let a cancer diagnosis stop her from becoming a mother, I was inspired. Her story could give other cancer patients and survivors hope of having or continuing to have a family.
"It was our dream to have a family," Lindsay says. Unfortunately, like many other young adults with a cancer diagnosis, Lindsay learned infertility was a risk with her treatment.
From what I've learned, not all patients are given upfront information about potential fertility risks before therapy. If I had treatment and learned, after it was too late, that I could've done something to be able to have children of my own one day, I would feel denied the right and ability to have biological children.
With chemotherapy, the possibility of infertility may depend on age, type of drug and drug dose. Ifosfamide, chlorambucil and cyclophosphamide are a few drugs that can damage eggs. High doses of radiation therapy can also lead to premature menopause by destroying eggs in the ovaries. Even radiation not aimed at the reproductive organs can still cause damage by bouncing rays inside the body. Several options are available for women who want to plan for a family after treatment, including egg or embryo freezing, using an egg donor, surrogacy and adoption, to name a few.
The couple chose to freeze embryos before Lindsay started chemotherapy in late 2010 with the hope that she might be able to carry them after her year-long treatment of chemotherapy, radiation and surgery.
"We're very blessed that I had babies on the brain," she says. "That really was our only chance at the time."
The Giannobiles' plan for Lindsay to complete therapy, be finished with cancer and have a child was derailed when, a year after starting treatment, she learned the cancer had spread to her bones. The cancer, now stage 4, ultimately means she will stay on treatment indefinitely.
"Tony kept saying, 'God will make it so that we can be parents'," Lindsay says, but at this point, the couple had very few options of starting a family. Surrogacy was their first choice. They would have tried adoption, but Lindsay was told by multiple sources that they wouldn't qualify to be adoptive parents because of her cancer diagnosis. "We wanted our biological baby, and we believed that God's plan for us was just that since we were able to freeze embryos successfully," she says.
Their first order of business: find a surrogate.
Lindsay and Tony reached out to surrogacy agencies and sent emails to friends and family, asking if they knew anyone who might be willing to carry their child.
The Giannobiles received a response from Kristen Keighley, who she met during treatment.
"She said, 'I can do this, I want to do this for you,'" Lindsay says. "We got things started from there."
Surrogacy is one of the most expensive options for women unable to conceive. It can cost anywhere from $10,000 to $100,000, which includes doctor appointments, embryo transfer, surrogate compensation and legal fees. Most costs are not covered by health insurance.
To help them finance the surrogacy, friends of the couple held fundraisers. Lindsay's friend, Matt Russo, raised $1,000 for every mile he ran in a Columbus, Ohio, marathon. The final total neared $30,000.
On May 15, Lindsay and Tony's son, Rocco, was born via caesarean section. Lindsay says words can't describe the experience of watching Rocco come into the world. It is something she and Tony will always "vividly remember."
"To think our baby was frozen for about two years, then developed in someone else's body is just an absolute miracle," she says.
Lindsay describes their surrogate as a "selfless, selfless person." Kristen, a single mom, works and attends school full-time. "And to add one more thing to her plate, she carried our child."
Lindsay isn't ashamed of her decision to use a surrogate and feels surrogacy isn't talked about enough.
"I think our generation has gotten better with talking about cancer, but surrogacy is a different story."
Lindsay encourages others to not give up on the dreams they had before cancer. "Look at the things that you thought your life would consist of before cancer" she says. "I think that is so important."
For more information on requirements, costs and support for surrogacy, here are a few resources:
You can read more about family planning with cancer in CURE's Summer issue article, "Managing Expectations."RELATED POSTS
BY GUEST BLOGGER | JUNE 5, 2013
My cancer center is also a teaching hospital, which means I often encounter the future of cancer treatment: oncologists in training. They usually enter the room before my doctor and ask about my diagnosis, symptoms and drug side effects. I visit my oncologist enough for him to know the answers to their questions, but the exercise helps teach them good bedside manner.
I met my first oncology fellow soon after hearing the "C" word for the first time; so understandably, I was more than a little overwhelmed. The one thing my husband and I remembered from the discussion was that his name was Dr. Goldfarb, so from that moment on, every doctor-in-training I have met is simply referred to as a "Goldfarb."
Now that I am a veteran in the cancer center, I have a hidden agenda when I meet a Goldfarb: I want to show them I am a person, not a textbook statistic. The ability to see patients as people instead of cancer cases is a valuable skill for an oncologist – one that will no doubt be appreciated by the thousands of patients a doctor will treat throughout his or her career.
I tell them all how I was diagnosed with breast cancer at 29 with no strong family history. Thank goodness my gynecologist advocated for a biopsy even though the mammogram and ultrasound said my lump didn't have the characteristics of cancer. Statistically-speaking, it shouldn't have been cancer...but it was. My initial treatment included a double mastectomy with six hearty rounds of chemo. Statistically, I wasn't likely to have a recurrence...but I did. These are good lessons for anyone to learn, particularly doctors who will be diagnosing future cancer patients.
Last year, I met a Goldfarb in my breast oncologist's office one week and saw him in the gynecological oncologist's office the following week. Upon our second introduction, I laughed, "We actually met last week. Looks like we get to talk about the north AND south poles!" He just stared at the floor and avoided eye contact – I guess the humor of the situation was lost on him.
While most Goldfarbs take the opportunity to learn from patients, my most recent Goldfarb visit was extremely unsettling. I was telling him how it took almost six months to diagnose my recurrence because my X-rays were clean, despite a persistent cough and severe shoulder pain. He replied, "Well, statistics show that finding metastatic recurrence earlier doesn't mean you'll live any longer."
In the four years since my first diagnosis, I have never felt more like a cancer statistic than I did at that moment. I'm not sure if Goldfarb was trying to sound knowledgeable, or if he is arrogant enough to believe we know everything about this wacky disease. Cancer is so individualized, we don't always know why a drug will work in one case and not another – a fact that is scary and encouraging at the same time.
I quipped back, "Well, I have metastases to the lungs, liver and bones. Had we found my recurrence earlier, perhaps it would just be in my bones. And if I hadn't had so many spots by the time we discovered it, maybe I wouldn't have just spent 10 grueling months getting weekly chemo!"
My husband likes to say that I play in the small percentages, and I tend to agree. I was in the small percentage of women diagnosed in her 20s. I am in the small percentage of women who are metastatic in her 30s. And I hope to be in the lucky percentage of women that dies of something other than cancer well into my 90s.
We are not cancer statistics – we are people! I don't care how long the average woman lives with metastatic breast cancer, because frankly – who wants to settle for being average?
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.RELATED POSTS
BY GUEST BLOGGER | MAY 9, 2013
I recently returned from Stupid Cancer's sixth annual OMG 2103 Cancer Summit for Young Adults, a nearly four-day conference for young adult cancer patients, survivors, caregivers, professionals and advocates. It's the fourth year in a row I've attended this amazing conference, which began in New York City but has been held in Las Vegas for the past two years. Before you think this is some boring oncology event, think again. Here are 10 reasons I attended the Summit and so should you:
1) People understand what you're going through. You can drop words like neutropenia, stenosis and metastasis without people asking you what they mean. No one cares if you have to zonk out in the middle of the day or can't drink. You're not the only one having a hard time losing weight, growing hair or trying to find your way again after cancer. We've all gone through a lot and can relate with each other, share what we've learned, and make the whole crazy cancer and survivorship ride a little easier for each other.
2) You won't be judged or pitied. No one cares that you have one testicle, no nipples, a bald head, a red scar snaking across your chest or walk with a cane. We all have our battle scars. And it's nice to finally say, "I have/had cancer" without someone giving you the pitiful "Awww, you're too young... my cat has cancer too" spiel.
3) You'll learn something new. With 25 breakout sessions and 50 speakers covering myriad topics for patients, survivors and caregivers, you'll arm yourself with plenty of knowledge, no matter if you're newly diagnosed or 10 years out of treatment. From sex to survivorship, environment to insurance, and fundraising to fertility, there's something for everyone. Many of the sessions are repeated so you don't miss out on vital information. The speakers are not only top healthcare professionals, but advocates, caregivers and survivors.
4) You'll be entertained. This isn't your grandfather's oncology conference. One of the biggest problems adolescent and young adult (AYA) cancer patients and survivors have is age-appropriate support. But the OMG Summit changes all of that, delivering what could have been ho-hum information with straightforwardness and humor. For instance, OMG 2013 closed out with a comedic routine by Dr. Zubin "ZDoggMD" Damania, who in his own words mashes "medicine, music and madness to educate and entertain." We also watched the First Descents documentary "Out Living It," played Re-Mission 2 at HopeLab's exhibitor booth, and watched as Stupid Cancer presented filmmaker Andrew Jenks of MTV's "World of Jenks" with its Social Impact Award. And there was plenty of time to dance.
5) You'll hear the latest on the AYA advocacy and research front. Top doctors, oncologists, healthcare pros and non-profits are on hand to talk about rapidly changing AYA advocacy and research. (I have to say, I felt pretty darn smart coming out of sessions after learning about genomics and neuropsychology.) Most sessions end with a Q&A period, allowing them to answer your burning questions on topics that run the gamut: treatments, late effects, sexuality, complementary medicine, carcinogens in the environment and more. Plenary sessions focused on genetic breakthroughs and personalized medicine, as well as progress in AYA research and AYA clinics.
6) You'll meet people working hard to make sure the AYA voice is heard. You'll never meet a group of more dedicated folks than the employees and volunteers of Stupid Cancer and all of the non-profit and advocacy groups that attend and exhibit at the conference. With young adults accounting for 72,000 new cancer diagnoses each year, it's critical that the medical community understands our needs from treatment to survivorship and beyond.
7) You'll be inspired. There are so many inspiring people contributing to the AYA cancer community, from starting non-profits to running marathons and embroidering hats to granting cancer patients and survivors dream days. If you have no clue how to get involved, you'll find plenty of ideas at the OMG Summit.
8) You'll laugh and cry. Where else can you be telling someone a cancer joke one minute and then crying over shared experiences the next? Once and a while you'll even get thrown a curveball, like a surprise marriage proposal. Plenty of tissues are provided.
9) You'll learn to get busy living again. The OMG Summit is not for people who want to stay in bed all day and cry, "Woe is me." It's about not letting cancer rule your life and giving it the bird. Sometimes you need a little help, and everyone in attendance is there to give you ideas and support to make that step.
10) You'll make friends for life. If there's anything positive that comes out of cancer, it's the amazing, supporting, fun friends you make--a rapport that lasts well beyond the walls of the OMG Summit.
If you missed OMG 2013 this year, you can still attend the OMG2013/East one-day conference in New York City on September 28. It's a bit more intimate that the annual event, but has the same, great purpose and people. Hope to see you there!
Amanda Marsh was diagnosed with Non-Hodgkin's primary diffuse large b-cell lymphoma in 2005 at the age of 22. She was treated at Stony Brook University Medical Center and is nearing eight years of remission. She's currently deputy editor for Bisnow Media and lives in Islip, Long Island.RELATED POSTS
BY GUEST BLOGGER | MAY 6, 2013
I stirred up some controversy in my last article about having a genetic predisposition for cancer. Apparently I opened a huge can of worms with the article's opening statement:
"Even the most well-adjusted cancer patient can't help but ask, 'Why me?'"
Do you ever ask the question, "Why me?" And if you do, do you think about all the good in your life and the fact you didn't deserve to get cancer? I personally think it's a natural, human thought, simply because NO ONE DESERVES TO GET CANCER.
I am not ashamed to admit it – sometimes I look at a neighbor or a friend and think, "Why me, and why not her?" It's not because I feel sorry for myself or think bad things should only happen to other people. And while I don't believe I was "chosen" to spend the majority of my life fighting a battle with cancer, I do think there is more to all of this than just a roll of the dice.
For me, asking, "Why me?" has nothing to do with religion, morality or philosophy. It's about unlocking the mystery of why people get cancer in the first place. Did I make choices to cause this? Is there something I could have done differently? What can I do to prevent this from happening again?
Cancer treatment is very literally a fight for your life, and information is one of the most powerful tools we have in that fight.
If we know why one person gets cancer while another one doesn't, we will be better prepared to fight, prevent and CURE cancer. If one in two men and one in three women will receive a cancer diagnosis in his/her lifetime, millions of lives might be saved if we all ask the simple question, "Why me?"
Carrie Corey is a wife, mom and metastatic breast cancer survivor. She will be reporting in frequently on her journey.RELATED POSTS
BY ELIZABETH WHITTINGTON | APRIL 30, 2013
The sixth annual OMG! Cancer Summit for Young Adults wrapped up this past weekend in Las Vegas. While CURE wasn't able to be on the ground with the gang from Stupid Cancer this year, we heard it was a hit.
You can see video recaps of last year's event here, as well as a series of webinars on the OMG cross-country road trip that eventually led to Las Vegas. We'll give the OMG staff a little more time to put together the 2013 recap video.
This year's summit logged more than 500 survivors, caregivers, healthcare professionals and advocates.
And a marriage proposal. How's that for their motto of "Get busy living"?
OMG volunteers had heard that Brian, a participant at the conference, intended to propose to his girlfriend, Heather, during the weekend. Once Matthew Zachary and Kenny Kane, both OMG founders, learned of the proposal, they helped Brian set up the surprise.
During the closing ceremony, Heather was awarded the "Redhead Spitfire Award." When she came up to the stage to accept her recognition, Brian popped the question.
Heather has exemplified "grace, courage and joy," during her cancer experience, which made the proposal in front of friends and fellow survivors even more special. "The Stupid Cancer family is thrilled to congratulate Heather and Brian on their engagement," said Thea Linscott, with Stupid Cancer.
She said yes.
In addition, this year OMG! has expanded the caregiver track. "In listening to the young adult cancer community's special needs, OMG2013 included a caregiver track that was not only well attended, but applauded. Caregivers were given the opportunity to share their stories, challenges and triumphs with each other and panelists," Linscott said.
The Volunteer Legacy Award was given to Scott Slater, Erica Mlot and Jason Mlot by Kenny Kane, Matthew Zachary and Alli Ward to recognize their dedication to Stupid Cancer.
You can view some of the photos and commentary from the event on the OMG Summit Facebook page. We'll also be posting guest blogs from those who attended the event, so stay tuned!RELATED POSTS
BY GUEST BLOGGER | APRIL 24, 2013
I should have been excited and proud. Instead, I was royally pissed off.
It was November 2012 at the annual meeting of Critical Mass: the Young Adult Cancer Alliance. I had just listened to the beautiful and formidable Suleika Jaouad, a young adult cancer survivor and blogger, tell her cancer story to nearly 200 representatives of medical, research and advocacy organizations, all assembled to improve the lives of young people affected by cancer.
So why was my overriding emotion one of frustration?
It was because the story she told--one of misdiagnosis, uncertainty, dismissal and isolation--hit way too close to home. Tweak a few details and knock it back a couple of decades, and it could have been my own story, circa 1994. I couldn't believe that, nearly 20 years later, with all the progress we had made in launching and growing the field of young adult oncology, a newly diagnosed patient would still run up hard against so many of the same obstacles and challenges.
Granted, there were a few major differences in our tales. The first was her forum: Suleika blogs for the New York Times about many issues facing young adults with cancer through the lens of her personal experience. To have a public platform at a place like the Times is, in itself, a giant leap forward in recognition and credibility for the field of young adult oncology.
Second, on a more practical front, she had frozen her eggs to preserve her fertility. When I was diagnosed, cancer-induced sterility was something that you never anticipated but were supposed to accept gratefully after the fact, an unfortunate bonus that came along with the grand prize of survival. The fact that fertility preservation was incorporated into her cancer experience is an achievement worth applauding.
The final and most obvious difference was that she was telling her story to a ballroom full of people who cared passionately about helping young people with cancer like her--healthcare professionals who were caring for young adults, researchers who were studying their needs and issues, and advocates who were developing resources and services to support them. While I had struggled to find even one other young adult patient during my year-plus of treatment, Suleika had just spoken in front of a caring and engaged community that didn't even exist as a figment of my imagination back in the day.
But Suleika's story, and her challenges in finding this community and its wealth of resources, made it starkly clear that, while much progress has been made, there is still far to go in order for newly diagnosed young adult patients to reap the benefits of that progress the instant they hear the words, "You have cancer."
When Critical Mass formed in 2006 under the auspices of the LIVESTRONG Foundation as the Young Adult Alliance, it was a bold experiment in simultaneously building a community and a new field of oncology. We were a smallish group of committed volunteer stakeholders who wanted to amplify the (slowly) growing awareness of an overlooked and misunderstood population: young people with cancer between the ages of 15 and 39 years old whose survival rates, it had just been discovered, hadn't improved since the 1970s. And for those of us who had been patients ourselves, we knew firsthand that there was a lot that required improvement. Things like rampant delays in diagnosis, no peer support, financial and disclosure challenges for those in fledgling careers, the need for fertility preservation information and financial assistance, no medical "home" between the pediatric and adult worlds and, in general, few resources addressing the unique needs of cancer patients at this life stage in a way that was both relevant and resonant.
Our solution was to bring together everyone who cared about--or who we thought should care about--young adults, and to throw them in a room together with structured collaboration to identify the issues and build a plan to address them. After that, our hope was...well, that magic would happen. That enough people would care, and would continue to care, to bring about a critical mass (pun fully intended) of interest that would sustain implementation of the plan and the continued growth and expansion of the field.
And magic DID happen. Our young adult ecosystem has continued to expand and grow. Attendance at the annual meeting has increased every year. Many new organizations that offer new services and resources have come into being. There are medical fellows being trained in young adult oncology. There is a journal and a professional society. The annual tally of journal articles with AYA references has increased from negligible to more than 5,000 per year in a just few short years.
The growth of the network has been so robust that the LIVESTRONG Foundation opted to support the spin-off of the whole program into a separate 501c3 non-profit---et voila, Critical Mass was born. And as we at Critical Mass take a hard look at where we have been in order to chart our best path forward, one thing that we know for sure is that the fundamental desire to grow the network and strengthen our mission to serve young adults with cancer has never changed.
One of the characteristics that defines young adults is impatience, and an altered perception of time. It's one reason that, when you tell a young person that they "only" have to go through, for example, a year of treatment, they will look at you like you are certifiably insane and will almost certainly tell you that a year is an unfathomable length of time to step outside of the life they are meant to be living.
Although young adulthood is fast receding in my rearview mirror, I think that characteristic is ingrained enough to explain why I can feel frustration and impatience in the face of what most would call success. But this week [April 1-7] , as we celebrate National Young Adult Cancer Awareness Week (which, I will note, also did not exist during my own cancer journey), I will allow myself to experience a measure of satisfaction before turning around and rolling up my sleeves to join again with the rest of this incredible community as we continue our work to make sure that we are there to catch the next young adult who falls through the cracks. And the next, and the next, and the next.
Heidi Schultz Adams is President and CEO of Critical Mass: the Young Adult Cancer Alliance, and a 20-year survivor of Ewing's sarcoma. Founder of Planet Cancer, the first online community for young adults with cancer, she also literally co-wrote the guidebook on how to "do" cancer in your 20s and 30s: Planet Cancer (The Frequently Bizarre but Always Informative Experiences and Thoughts of Your Fellow Natives). Heidi's blog was originally published in The Huffington Post's "Generation Why" series on young adults with cancer.RELATED POSTS
BY GUEST BLOGGER | APRIL 23, 2013
Even the most well-adjusted cancer patient can't help but ask, "Why me?"
While there are a number of lifestyle choices that can increase one's risk of cancer, there's no real explanation why an 8-year-old has to struggle with leukemia when a 90-year-old man enjoys a long life of smoking cigars and drinking whiskey.
I didn't develop breast cancer because of the cigarettes I smoked in college. I didn't get it because of all the beer and bacon cheeseburgers I consumed in my 20s. I get to blame my cancer on something that is beyond anyone's control: I tested positive for the BRCA 2 genetic mutation. As a result, I was more likely to get cancer in my lifetime than to NOT get cancer.
Some people don't want to know if they are genetically prone to getting cancer because they think it will cast a black cloud on their future. But burying your head in the sand will not make that lump go away - it will only make you less prepared to fight when cancer rears its ugly head. Had I known that I was such a high risk for breast cancer, I could have taken measures to prevent it.
No one wants to go under the knife voluntarily, but having a bilateral mastectomy before receiving my diagnosis would have significantly reduced my chances of getting breast cancer. Instead, I will be in treatment until they find a cure. Because I didn't have a strong family history of breast cancer, I had no reason to consider getting tested for BRCA. My dad's sister had successfully completed treatment for breast cancer, but I didn't know of any other cases of breast cancer in the family until after I tested positive for the mutation.
Last week I went with CURE Editor-at-Large Kathy LaTour to see Decoding Annie Parker (click here for her movie review). While I enjoyed the film and hope it will generate awareness about BRCA genetic mutations, I would like to share a few facts with you that you will not learn from watching the movie. (DISCLAIMER: I am not a scientist, doctor or geneticist. I am a 33-year-old metastatic breast cancer survivor with a BRCA 2 genetic mutation who has spent the last four years navigating the cancer world as a patient.)
1.) Having a BRCA mutation gives a woman at least a 60 percent chance of getting breast cancer in her lifetime. It can also increase a man or woman's chance of developing several other kinds of cancer, including skin, pancreatic, ovarian, testicular, prostate, stomach and more.
2.) BRCA mutations can affect each generation earlier than the one before it. Learning you have a mutation doesn't foreshadow an event that might happen in your 50s or 60s. My aunt had breast cancer in her 40s, but I was diagnosed at 29. (Remember, the recommended age to begin mammograms is 40.)
3.) If you know your risk, you can get screened early and often, and there are preventive measures you can take. We all know that early detection is key to the best prognosis. And ladies, it would have been much more fun to get the free boob job without also getting the cancer diagnosis and the gallons of chemo - TRUST ME!
4.) Your family health history includes both parents. In terms of breast cancer, many doctors only ask about your mom's family history, but think back to middle school science: you get equal genes from mom and dad. I inherited my BRCA mutation from my dad's side of the family.
5.) Your BRCA status cannot affect your health insurance coverage. The Genetic Information Nondiscrimination Act (GINA) protects Americans against discrimination based on their genetic information when it comes to health insurance and employment.
If you have numerous relatives with breast cancer or other related cancers, talk to a genetic counselor about getting tested for hereditary genetic mutations like BRCA 1 and BRCA 2. (And don't buy one of those DIY take home tests!) Think of testing as a powerful tool that can help in your family's individual fight against cancer. You could be saving the life of your daughter, your niece, or your granddaughter, as well as your own.