BY GUEST BLOGGER | MARCH 5, 2014
When I was first diagnosed with breast cancer at age 29, doctors immediately sent me for genetic testing. We learned that even though I had no significant family history of cancer, I had inherited a genetic mutation from my dad's family, giving me more than a 50 percent chance of getting breast cancer in my lifetime. Unfortunately, I did not know about my BRCA2 status before finding a lump in my breast, since a prophylactic mastectomy could have significantly reduced my chances of getting breast cancer.
As a young woman with breast cancer, there have been times when I can't decide if I feel more like a pariah or a celebrity. Now that I am stage 4 and living with cancer (a concept even I can't wrap my head around sometimes), there are days when I struggle to be a normal person – a wife, mom, friend, daughter, sister ... not the poster child for "young women get breast cancer too." Although it is an important message to broadcast. I refuse to think there is a "master plan" reason for me getting cancer, but I do know some good things have happened as a result of it. The only way I know how to make sense of my roller coaster life, is to hope my journey positively impacts other people.
I witnessed one of those impacts just yesterday when I received a text from my friend Jennifer, saying, "You are more of an inspiration than you know."
My mom and I met Jennifer a few years ago at the Susan G. Komen 3-Day for the Cure in Dallas. With 60 miles of walking and talking, we quickly learned Jennifer was walking for her mom who had recently passed away from breast cancer. By the end of the three days, Jennifer had heard all about me and my breast cancer – and my increased risk as a result of a genetic mutation.
Over the next few years, Jennifer and I kept in touch. She met with my breast surgeon and underwent genetic counseling. She too, tested positive for a BRCA mutation, but without a cancer diagnosis, she had to face the tough question: now what? The last time I saw her, I had to break the news that my cancer had returned and is now stage 4.
Her text this week was to tell me she had scheduled a double mastectomy.
It's silly to think of myself as an inspiration because I don't feel like I have done or accomplished anything significant, but I do take comfort in knowing I have inspired her to take control of her own health. For those people who may not believe prophylactic surgery is the way to go – take a look at Jennifer's two little guys: don't you think they want their mommy to see them grow up? I know Henry does, and that's what gets me out of bed every day, fighting the good fight.
In a few months I will take part in a clinical study to look for additional biomarkers like BRCA; because the more we know about my cancer, the better equipped we will be to fight it. Congratulations to my friend Jennifer, for doing everything in her power to fight cancer. I hope we continue making genetic discoveries that can empower other people to do the same.
Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.RELATED POSTS
BY GUEST BLOGGER | FEBRUARY 28, 2014
The most satisfying aspect of my job is when I meet a patient who is suffering from a rare disease that until very recently was untreatable, but which today can be treated with a newly-approved medication.
Last May, at my organization's annual dinner, we invited four patients to come to the podium to discuss their diseases. They then made presented awards to the presidents of the companies that had developed a new drug already being used to treat their disease. I saw tears come to the eyes of the people attending the dinner.
We all know one or more people who are alive today because of the remarkable medical advances made very recently. This includes the many new treatments for both rare and more common cancers. The latest report from the American Cancer Society noted that between 1991 and 2010, there was a 20 percent decline in the overall death rate from cancer. The organization that I head, the National Organization for Rare Disorders (NORD), focuses on patients with a rare disease, which is defined as a disease that affects 200,000 or fewer patients in the U.S. Many rare diseases are cancer, and as we learn more about cancer, more and more will be classified as "rare."
This week is a special week for all patients with a rare disease, as Friday, Feb. 28, is commemorated around the world as Rare Disease Day.
We designate the last day in February as Rare Disease Day because every four years, when there is a leap year, the last day of the month is February 29. It truly is the rarest date on the calendar.
This year, my thoughts turn to the remarkable progress we are making in developing new treatments. Cancer research is especially exciting. Cancer immunotherapy – using the body's own immune system to fight cancers – promises to lead to new therapies for solid tumor conditions such as melanoma, non-small cell lung cancer and bladder cancer.
At NORD, we rededicate ourselves this week to the tasks that are especially critical for the 30 million Americans with a rare disease. Five tasks stand out:
1. Supporting research for rare diseases, including cancers that are rare. It is ironic that we are on the cusp of so many scientific advances, at a time when the research dollars are becoming scarcer. At NORD, our goal is to support the federal and private commitment to medical research.
2. Enhancing the capability of physicians to diagnose rare diseases. Most physicians have little experience in diagnosing a rare disease, some of which affect a handful of people. For many diseases, it can take half a dozen years, or more, before an accurate diagnosis is made. At NORD, we support systems that provide broader education for physicians in enabling them to diagnose rare diseases more quickly and with greater accuracy.
3. Expediting clinical trials. Testing new treatments is always time consuming, especially when little is known about a disease, and when there are few patients to test. At NORD we are committed to increasing our knowledge about how a rare disease naturally progresses, with no intervention or with existing interventions, because we can then more easily assess the effectiveness of a new treatment. And we also have established networks of patients with rare diseases so that recruitment for clinical trials can be expedited.
4. Expediting new drug approvals. We are fortunate to have officials at the FDA who understand that, sometimes, it is not feasible to test a new treatment for a rare disease the same way that a treatment for a common disease would be tested. The FDA has demonstrated great flexibility in assessing new treatments for rare diseases, and we at NORD support that spirit.
5. Assuring access to new treatments. Our health care delivery and reimbursement systems are changing. There are more patients entering the system, and better and more expensive treatments are being developed. At NORD, we can committed to working with insurers -federal, state and private – to assure that new treatments become available in a timely way. At NORD we also pioneered patient assistance programs that enable patients in need to receive the support they need.
One more thought as we commemorate Rare Disease Day, and that has to do with the new empowerment of the patient. We are seeing more and more personalized drugs – drugs that are created for an individual patient. As personalized medicine becomes a reality, patient involvement in the development process becomes ever more important. The word that I use is "patient-centricity." We at NORD are committed to making the patient the center of the health care system.
I hope that everyone who is concerned about medical advances – and that should be every one of us – takes a few minutes this Friday to think about Rare Disease Day, and about the progress we have made, the progress we are making, and the challenges that remain.
Peter L. Saltonstall is the president and CEO of the National Organization for Rare Disorders (NORD), a nonprofit organization representing the 30 million Americans with rare diseases. Learn more about NORD at rarediseases.org.RELATED POSTS
BY KATHY LATOUR | FEBRUARY 27, 2014
A few weeks ago I was asked to speak on a panel about survivorship, so I called on my friends Isabel, Carrie and Suzan to see if they could spend a little time telling some folks about what it's like to do cancer.
The panel was for McKesson Specialty Health, the company that publishes CURE, which does a wonderful job educating its employees and even its customers about cancer.
The event is called Oncology University, and new employees and old timers are given the option to come and learn more about the disease that they spend their day addressing. These folks could be in any of a number of positions, most of which will never put them in contact with the people who ultimately benefit from their work day – cancer patients.
I felt that Suzan, Isabel and Carrie would offer a number of details that I couldn't, so I invited them to join me. Isabel is a head and neck survivor whose salivary gland cancer was treated with surgery alone. Part of her story is living with chronic pain and the steps she has taken to get off opiates, which include acupuncture, exercise and living with pain above what many of us would tolerate. Suzan and Carrie have similar stories, both are metastatic breast cancer patients and both have one child. Suzan has been living with metastatic disease for a few more years than Carrie, so she spent some time giving her advice on the side effects of the drug she had just started taking. Carrie wrote about dealing with the the side effects in her last blog for us, and I was glad that Suzan had told her to power through it because the drug is showing good efficacy in treating metastatic disease.
Carrie shared what it was like to have a 2-year-old, Henry, whom she and her husband adopted the same month she found out her cancer was back. She was diagnosed initially at 29.
The audience was great, listening and asking good questions. It was hard not to keep reminding myself that Carrie and Suzan had metastatic disease, something they reminded the audience of frequently. As Carrie said, "It's important to remember we are LIVING with cancer. We look well to the average person, and to our friends, who were around when we were initially diagnosed and who now don't know what to do with us."
It's a great idea to have the people in cancer listen to the people with cancer. Let us know if you want us to come to your place with our dog and pony show.
I had a chance to see Carrie again last weekend when she and her mom and Henry came by for a visit. On the day of the panel, I had overheard Suzan, whose daughter is now 11, and Carrie talk about their negotiations with the powers that be. Suzan said something about how many years she needed to see her daughter graduate high school. Carrie said, "I need 15 years."
Henry is a beautiful little boy with a head of blonde hair. And I know it's been said often that adopted children look like their parents, but Henry really does look like Carrie down to the dimples in their cheeks.
It makes me mad that what other parents take for granted my two friends have to look at as far from a done deal. They shouldn't have to negotiate for the years they will have with their children. They should have more options.
Selfishly, I want more money for research into metastatic breast cancer so my friends, and all the other women who are having to barter for years can just look forward to the future, not wonder if they have one.RELATED POSTS
BY GUEST BLOGGER | FEBRUARY 26, 2014
Since my diagnosis in 1994 of a rare, incurable condition--medullary thyroid carcinoma--I've searched for an effective treatment. After three neck operations and chemotherapy did little to check my cancer's spread, I entered a drug trial at Fletcher Allen Health Care in Vermont. The oncologist running the experiment was Dr. Steven Grunberg, who took me under his wing. Despite my aggressive disease, he reassured me with quiet confidence. We're going to help you stick around, he said.
Today, thanks to Dr. Grunberg and his staff, I'm still here. But Dr. Grunberg isn't. He died of lung cancer in September. It's a painful irony I'm still sorting through.
By the time I found Dr. Grunberg five years ago, my cancer had spread to my lungs. I was growing desperate. In my mid-40s, with many things yet to accomplish in life, I researched experimental treatments and exchanged information with other sufferers of my rare disease through the Thyroid Cancer Survivors' Association.
One day I clicked to the clinical trials page of the National Institutes of Health, and learned of a novel drug being tested against my specific condition. The drug, then called Zactima, is a tyrosine kinase inhibitor. Basically it works to block proteins that tell tumors to grow.
Vermont's Fletcher Allen Health Care was among the study sites. One weekday morning I drove three hours from my Clifton Park, N.Y., home to Burlington, Vt., to meet Dr. Grunberg and get the ball rolling. Though untested drugs can be risky, he quickly earned my trust. A thick-haired man who spoke in quiet intelligent bursts, he'd keep a close eye on me, monitoring my status through bloodwork and scans. He spoke frankly of possible side effects, which included skin and intestinal problems. There was another concern. Two-thirds of study participants were supplied with the drug--but one-third received a placebo. Neither doctor nor patient knew which one patients had. I could be left without a life preserver.
By my next appointment, three months later, my levels of calcitonin--a hormone stimulated by my cancer--crashed to 10,000 from over 100,000 before the trial. It was apparent I was among the lucky two-thirds of patients. The drug was working!
Dr. Grunberg wasn't one to show a lot of emotion with me, but he shared an enthusiastic smile when he told me the good news. I immediately called my wife to tell her, and drove back to New York that afternoon, my heart singing with hope for my future.
Over the next five years I visited Fletcher Allen every three months. I came to refill my prescription of once-a-day Zactima pills, undergo CT scans and bloodwork -- and to feel supported by Dr. Grunberg and his staff of nurses and researchers. I remember pricking my ears to catch every morsel of what Dr. Grunberg was saying. He was a steadfast presence, and when he examined my neck and chest for recurrence, I was in sure hands.
He was more than a doctor to me. As a theater buff, he took an active interest in my writing, and spoke to me of his daughter's creative pursuits. I emailed him several of my short stories, and he always took time to send me a complimentary email back. I considered him a friend.
The drug kept my condition at bay, and as a result of the trial was approved as Caprelsa by the Food and Drug Administration for use against my cancer. Today thousands of patients like me can now benefit from work by Dr. Grunberg and other study researchers.
The last time I saw Dr. Grunberg was this past spring. I noticed no difference in his manner toward me. He seemed healthy, energetic--his hair as thick and dark as ever. He gave zero hint he had cancer, let alone terminal cancer, even as he treated mine. He betrayed nothing. But when I visited Fletcher Allen again in summer I received the odd news he'd taken a leave. I asked for elaboration but the staff was oddly quiet. It wasn't until I visited again this fall when his staff told me Dr. Grunberg had died of lung cancer.
I was stunned. But he didn't seem sick, I insisted. He kept working right up until the end. That's when it hit me: he didn't want his patients to know their doctor was dying of the same condition they hoped to beat. Dr. Grunberg didn't want them to lose hope, even as his own situation grew hopeless. My sense of betrayal at not being told sooner melted away into gratitude. His silence was admirably selfless. The world--my world--is poorer without him.
When I revisit Fletcher Allen for my next appointment in January, I'll see another oncologist who has replaced Dr. Grunberg on the trial I'd entered. She's a smart, caring doctor, and I recognize signs of selflessness in her as well, because I now have a standard against which to measure people's worth. Because Dr. Grunberg gave me a new lease on life, even as his own lease expired.
David Kalish is a survivor of medullary thyroid carcinoma and the author of the comedic novel, The Opposite of Everything, which inspired this essay and will be published this spring. You can read more at davidkalishwriter.com.RELATED POSTS
BY GUEST BLOGGER | FEBRUARY 26, 2014
We call them survivors for a reason. They inspire. They give us hope. They bestow upon future survivors the courage to face the darkest of times. They remind those of us who fight against cancer that our efforts are not in vain...that victories are sometimes won and lives saved. But for those who have faced death and conquered the disease, what now?
Life after cancer is different. The truth is survivorship experiences vary as greatly as the individual battles with cancer itself; but for many, survivorship may include a lifetime of struggles. Regardless of the type of cancer faced, many of these challenges revolve around oral health.
One of the most common side effects of chemotherapy and radiation treatment to the head or neck is severe dry mouth. For many, especially those who have survived oral and head and neck cancer, the impact of this condition is long-term and debilitating. Beyond just the discomfort, severe dry mouth can cause rampant dental decay, frequent oral infections and difficulty in chewing and swallowing. This, in itself, can lead to poor nutritional intake.
For those survivors whose treatment included head or neck radiation, limited opening of the mouth, known as trismus, can make eating a difficult task and oral hygiene burdensome. Oral and head and neck cancer survivors also face unwanted oral health issues with the possibility of rapidly advancing periodontal disease (gum disease), burning mouth syndrome, and osteonecrosis, an occurrence of dead bone which becomes exposed through the gum tissue and is often painful and can lead to systemic infection.
It's not just those with oral and head and neck cancer who face oral health issues related to cancer care. Those treated with intravenous bisphosphonate drugs for multiple myeloma and metastatic bone disease have a similar risk for the development of osteonecrosis of the jaw.
Bisphosphonates are excellent drugs that have a definitive place in treatment regimens, but their effect on the bone remains for decades. Those survivors whose treatment has included intravenous bisphosphonates must be certain their dentist knows their medical history and is familiar with the risks associated with this class of medications. Survivors who continue to take maintenance medications often continue to experience issues with dry mouth. While dry mouth may not be as severe as during cancer therapy, the decreased salivary flow is often enough to increase the risk of rampant dental caries and intraoral infections.
Some of the challenges faced by survivors go well beyond health issues. Social and psychological changes are not uncommon. For the oral and head and neck cancer survivor, eating in a restaurant may be so great a chore that what was once a pleasant outing is avoided because of sensitivity to foods or inability to properly swallowing. Frequent choking or eating slowly makes the survivor self-conscious in a public setting. For survivors with cancer that has left them scarred with physical changes, psychological and emotional scars often take much longer to heal. Whether it is the head and neck cancer survivors acceptance of a reconstructed face, adjustment to a new body image for the breast cancer survivor, or the prostate cancer survivor's struggle with urinary incontinence, the challenges of survivorship are very real and a means of support and coping must be realized and valued.
As more healthcare providers prioritize the importance of providing services to cancer survivors, it is my hope that we will see more emphasis placed on meeting the physical, emotional and spiritual health of this special group of individuals. Survivorship issues transcend the perceived barriers between medicine and dentistry and mental health and social work. This is an appropriate cause for healthcare professionals from all walks and specialties to come together for the betterment of those who were once our patients and are now survivors!
Dennis M. Abbott, DDS, is the founder and CEO of Dental Oncology Professionals, an oral medicine practice dedicated to care for the unique dental and oral health needs of individuals battling cancer.RELATED POSTS
BY GUEST BLOGGER | FEBRUARY 24, 2014
One of the many unfortunate things about having a rare tumor was that for some time no one was certain what it was. In fact, I was misdiagnosed a couple of times.
The first surgeon that I came in contact with believed it to be esthesioneuroblastoma, which is quite rare. It has affected maybe 800 people in the world. However, it is a slower moving tumor, and he had me convinced that this thing could have been slowly growing for up to five years without me being the wiser.
His plan was to do surgery. I had my first CT scan on a Friday and he wanted to do surgery the following Tuesday. He said he couldn't do a biopsy beforehand because the tumor was in my brain. Being in 'fix it' mode I agreed to it. To sum up: This man, who was very nice by the way, and who happens to be a surgeon, said he could remove the tumor. It sounded good to me. My family flew in the next day and put the kibosh on that plan.
At first I argued with them. I wanted this tumor out of my head, and there is a man (who went to medical school) who says he can do the task, so why not let him.
While I was lying in the ICU that weekend, my family worked tirelessly to come up with a plan to make me listen. Finally, after the relentless efforts of my parents and siblings they made contact with the Anschutz Cancer Center at the University of Colorado hospital and MD Anderson. They believed a biopsy could be done through my nose.
I'll admit that after the biopsy, things became fuzzy for me. While the doctors convened on my case and treatment, my condition got worse. I was hardly able to get out of bed, and the prescription painkillers had me pretty much out of it. So much so that I don't remember the majority of things that happened in this time. I was finally hospitalized at the university hospital, and I began my first chemotherapy treatment. It was a 96-hour infusion of taxol, cisplatin and 5-FU. Nurses practically wore haz-mat suits while administering these toxins into my veins.
After my treatment, a couple weeks later, I started to feel better. A nurse was disconnecting my IV, and she started asking me about my condition. My sister was sitting in the room with me as I answered. I told the nurse it was esthesioneuroblastoma. My sister sat up and interrupted me, "Umm, Becks, you know that's not what you have, right?"
"No. Don't you remember the doctor giving you the results of the biopsy in the hospital?"
"He did?" Like I said before, things got fuzzy. I didn't even retain important information. "What do I have?" I asked.
"Sinonasal undifferentiated carcinoma," she told me.
"Huh." I paused. "Is that better?" I asked with a ray of hope.
She shrunk in her chair. "No."
It turns out it was a more aggressive tumor. Instead of growing in five years, it grew in five months. It was also more rare, affecting 400 instead of 800, and it was classified as inoperable. They knew that it started in my sinuses and that is was some sort of carcinoma, but the word 'undifferentiated' pretty much meant they didn't really know what it was.
After six chemotherapy treatments and more than six weeks of radiation therapy, the tumor shrunk enough to be removed surgically. After the tumor was completely removed and available for further testing I was officially diagnosed with sinonasal teratocarcinosarcoma. When my surgeon told me the new diagnosis, I again asked, "Is that better?"
"No." Instead of being 1 in 400, I am now 1 in maybe 50-80 people in the world that have ever had it. It is highly aggressive and rare, and now we know that it is a polymorphic cancer, meaning it can affect and travel through blood, tissue and bone. In fact, part of the tumor had actually calcified and turned into bone--and you thought it couldn't get weirder.
Hindsight is always 20/20. If I had undergone that first surgery I most likely wouldn't have survived. Thank you to my family and friends who saved my life. You gave me the tools to live. You gave me a missile to take into a gun fight.
Being diagnosed with a rare cancer can be frustrating because there is not as much information out there on rare diseases. The study groups are small, so the statistics often sound very bleak. When I was looking into sinonasal teratocarcinosarcoma I was reading statistics like 'in a study group of 11 people, 8 died within 1 year. Of those who survived, 70% died within 5 years.' This was not encouraging information.
The support is not the same for those with rare cancers. The lack of support can be as small as not having our own color for a wrist band, and as large as minimal funding for research. There are no official parades, marathons or fundraisers for sinonasal teratocarcinosarcoma or the many other rare cancers out there. If you want those things for rare cancers you have to do it yourself. Sometimes that can make a person feel alone.
Everyone deals with trauma differently. For me I found that the best medicine was laughter. I found something to laugh about every day, and the amazing thing about laughter is that it is contagious. Others around us would open up more freely, and I have even made some lasting friendships from the waiting rooms in the cancer center. When you have a good attitude, you inspire other to do the same. Before you know it you won't feel so alone any more.
Becky Busch was diagnosed with a rare and aggressive cancer several years ago. Since surviving it, she has rediscovered her passion for writing. Among other things, she writes a blog about herself and her own battle with cancer at whoisbb.simplesite.com.RELATED POSTS
BY GUEST BLOGGER | FEBRUARY 24, 2014
Most any diagnosis of cancer is filled with worry and bad thoughts, but when the cancer diagnosis comes with the words that it's a rare cancer, the words are more than devastating, they're horrifying and nerve-racking.
How rare, what's the prognosis, why me, what did I do, what can be done and what are my odds or chances on recurrence and dying?
At least that was my reaction when I was told in 2007 that the tumor behind my right eye was adenoid cystic carcinoma; the more difficult part was the pronouncement by the oncologist that the cancer was incurable and fatal. "You will certainly die because of the cancer."
Wow, could it have been told in a gentler way, without the windows closed and dark curtains drawn all around?
After the surgeons and oncologist left, I took a half hour to myself and cried, uncontrollably. I needed that time to understand the magnitude of what had been said to me, and then I straightened up, took a deep breath, looked around and realized I was still alive and the cancer was just a disease like any other disease. All I had to do was find out more about the cancer and try to live life as best as possible.
The problem was gathering information about adenoid cystic carcinoma is that there's such scant information out there. Plus, what information is out there is sometimes so outdated and wrong.
For example, how many people are diagnosed each year with ACC, is it 1,200 or 1,500 or a lesser number? And what are the survival rates in terms of years? Different sites, different information. I wondered should I just pick my own numbers.
The other problem was finding an oncologist who had at least some experience with this type of cancer. The first one put it very bluntly, "30 years as an oncologist and you're my first ACC patient; I can't help you."
The second oncologist put it more mildly, "I know nothing about your cancer. I'm flying blind and learning as we go along. You probably know more about this cancer than I do."
My third and current oncologist hasn't said what he knows about this cancer, which I guess is good. During a visit, I did ask him if he's treating me like any other cancer patient, wondering if this cancer is different than other cancers.
It sure looks as though he's treating my cancer like any other cancer, with the standard six months between tests and check-ups.
I did pick five years as the starting number for survival rates; that sounded good but by 2012, a new tumor had been found pushing against the brain. It actually started growing in 2011 but it was missed, even with the MRI and contrast.
My oncologist gave me the bad news, there's nothing that can be done, surgery is out because the tumor had grown around a major blood vessel. If we tried surgery, I would die on the table. Oh, not good.
Chemotherapy has never been and was not an option with ACC because the cancer is so relentless.
It was almost as though the oncologist didn't have an answer; that he was at the end of the rope: and then, one last hope, radiation. But how much and how long, and would it be safe considering I had had radiation in the same general area in 2007; plus, this time there would be radiation to the brain. Thank God for Stanford.
Their recommendation, eight weeks of daily radiation and all will be good to go. Of course, with this cancer there is no good to go, ever.
On Jan. 2, news came that a growth had been found in the left lung; for now it's all observation and then a fine needle biopsy (I had that done for the eye in 2007, so no worries there).
What I've discovered in my cancer journey is that there is no ready-set information about adenoid cystic carcinoma. Yes, it is a rare cancer, and as such, there is little information out there on how to treat it and what to expect.
Also, there is little research being done leaving ACC patients to wonder why? Is it because this cancer affects so few? I know many ACC patients feel like we're the pariah, the black sheep of the family. I have noticed that ACC patients themselves have started their own websites for information on this cancer; only we understand what we're going through so it would stand to reason that we'd reach out to help each other.
We have several sites on Facebook, where we exchange information and often support each other as we fight this cancer; the sad part is so many new people are joining these sites and then there are the ones we say goodbye to...too often and too many. As for me, I am spending time with childhood cancer patients and helping raise funds for research.
Les Mahler is a journalist, copy editor, song writer, children's story writer, photographer, and an adenoid cystic cancer survivor since 2007. He's on his third fight against ACC.RELATED POSTS
BY GUEST BLOGGER | FEBRUARY 24, 2014
Many people don't know that lung cancer is a disease that can affect anyone. One in 14 people will be diagnosed with lung cancer and over half of those diagnosed will be people who either quit smoking decades ago or who never smoked a day in their lives. Lung cancer can happen to anyone regardless of age, gender, race, health or smoking history. Its patients have felt stigmatized, neglected and unsupported in their communities. Lung cancer is the least funded cancer even though it kills more people each year than breast, prostate, pancreatic and colorectal cancers combined.
These were the statistics I read while Google searching the disease that had suddenly invaded our lives. I had fallen into the role of caregiver and patient advocate without any warning or training manual. It was the hardest job I've ever had and at the same time, the most rewarding.
When my dad was diagnosed with lung cancer in 2002, his diagnosis came out of the blue and we had no local support. The isolation of a lung cancer diagnosis was intense. With little treatment options, incredibly low survival rates and no support or resources specially for his disease, the odds of survival for him began to plummet. This was our devastating reality 10 years ago. My dad died 11 months and 21 days after his diagnosis and he fought fiercely to live every one of those days. I promised my dad then that I would never stop working to support those affected by lung cancer. And I haven't.
Today, 11 years later, I am the director of support and advocacy for the largest lung cancer nonprofit in the nation, LUNGevity Foundation. I have created and managed support programs for people impacted by lung cancer and survivorship conferences that take place nationally and regionally. But it's been a long road of advocacy.
I encourage people who feel a calling or mission to become advocates for what they believe in to make a plan and stay the course. We need more of you in the cancer community to be the voice for those who can no longer speak.
I do have a few pieces of advice:
Take care of yourself.
While you are caring for the life of someone your love, don't forget to take care of yourself. You won't be useful to anyone if you are burned out and exhausted. Fighting cancer and fighting for someone's life is incredibly hard. Mistakes get made when we are tired or emotionally charged. Don't forget to take care of yourself. You'll do a better job at being a caregiver to someone else if you do. Take care of yourself and ACCEPT help from others.
Find the unmet need.
In my case and with a disease like lung cancer, our immediate unmet need was support for patients and families. Eventually that turned into access to information about the disease and treatment options and more funding for research so that there can be more survivors. All of those unmet needs put together are HUGE but taken a bit at a time they can be addressed. I'm not a researcher or a doctor, but I can navigate a patient during their journey to find the answers they may be looking for. I wasn't a social worker or therapist, but I could create a peer to peer support resource for people to walk the lung cancer journey together and build ways in which patients and families could help themselves. Find your unmet need and come up with an action plan to address it.
Connect with others.
There are other caregivers, family members, survivors and advocates who share your passion to advocate for your cause. Seek them out and connect with them on message boards, websites, and advocacy groups in your local community. Have phone calls, twitter chats, and meetups to discuss ways you can raise awareness and make an impact. If one person can make a difference, image what a group of like-minded people can do!
Be gentle on yourself.
I wish I would have taken this advice more. As caregivers to those we love we tend to take every victory and every setback personally. We also sacrifice our health and needs while caregiving. I remember when my dad passed away thinking that I hadn't done enough to "save him", as if anything I could have done would have stopped the progression of his cancer. "I didn't search the internet enough. I didn't explore 3rd or 4th opinions. I didn't tell enough jokes, pray enough or keep up a positive attitude 100 percent of the time. He didn't try alternative therapies." And a dozen other what-ifs and second-guessing-myself thoughts that flowed through my mind.
Today, I know the outcome would have been the same no matter what I did then, and from that experience I take away the precious memories and moments I was able to share with him as his caregiver and his daughter.
Looking back now I know the landscape of this disease enough to know that having access to information and treatment options, access to clinical trials and medications for side effects will make the road smoother for someone else. I know that having others to talk to can alleviate feelings of fear and guilt and isolation. Those are the unmet needs I've been trying to address.
Seek out support for yourself and your loved one while you are actively walking through cancer. And when you are no longer caregiving and ready to be an advocate, surround yourself with others who believe in your cause, will support you and help you to succeed.
Finally, don't lose hope.
Even if things don't work out exactly like you planned, don't lose hope that one day there will be more. More support, more treatment options, more awareness, more research and more survivors. I absolutely believe that there isn't anything greater than hope. It picks you up when you've been knocked down. It hugs you when you feel defeated, carries you when you receive good news, and it's the whispered promise that everything you have done and everything that you will do, matters.
Katie Brown is the Director for Support and Advocacy for LUNGevity Foundation.RELATED POSTS
BY GUEST BLOGGER | FEBRUARY 20, 2014
No, I'm not a celebrity – I'm a breast cancer patient.
For people living with metastatic disease, oftentimes medicine side effects are worse than the symptoms of the cancer itself, and such is the case for me today.
Two weeks ago I started taking a new drug (Afinitor) that studies have shown can dramatically increase patients' response time to my current medication (exemestane). As with any new drug, my medical team went over the side effects before writing the prescription; I admit I've somewhat started tuning that part out – it makes me feel like I'm watching a TV commercial for an erectile dysfunction drug. "Yuck!!! Who would want to take that?"
For me, when we're talking about LIFE-SAVING medicine, the benefit will almost always outweigh the negative side effects. I don't mean the debilitating side effects, I mean the manageable ones: I've lost my hair twice, I've had black fingernails, lost toenails....blah, blah, blah... diarrhea or constipation? Fatigue, aches and pains? You know the drill. If the drug works and gives me the quality of life to enjoy being a wife and a mom, I'm in. And so we start down the new path.
Now, when cancer drugs say you might get mouth sores or a rash, they don't mean an annoying cold sore or an itchy hand like "normal" folks might complain about. They mean painful, fire-breathing mouth sores and a rash that makes you want to scratch your skin off. While I don't have the rash on this one, I am not exaggerating about the mouth sores. The sore is inside my mouth, but my bottom lip is so swollen it looks like I was punched in the face.
When I dropped Henry off at school this morning, Chris was paranoid the teacher would think he is an abusive husband. It is HUGE. I am talking with a lisp, and I can't even sip my morning coffee without dribbling all down my shirt. Good times!
Like most aspects of cancer, there's also a mental battle going on here. My pride tells me I can do anything I want to do – that cancer doesn't have a hold on me. So I am determined to keep taking a good drug, even if it means dealing with some annoying side effects.
But I can hear the words of my oncologist's nurse, reminding me I can easily land myself in the hospital if side effects get out of control. Or worse, have to discontinue the medicine for good.
There's a thin line separating "deal with it" from "call your doctor."
Whereas last week I thought I could power-through, today I cried mercy. This morning's count was eight mouth sores, which makes me not want to eat, drink or talk! Darn it. I called my doctor, who gave me a few days off meds to let my mouth clear up with the help of some prescription goodies. Hopefully next week I can try it again.
I'm going to enjoy my weekend, pouty lip and all. Since I refuse to be a hermit, I will likely encounter strangers who ask what happened. There's no way to quickly explain how breast cancer caused my fat lip, so I need to come up with a better story or else I'll end up telling my life story to the checker at the grocery store. Right now I have three good options.
1. My two-year old Henry threw a ball and hit me in the face.
2. I just started taking a kick-boxing class.
3. You should see the other guy!
What do you think? Any suggestions?
Carrie Corey was diagnosed with stage 2 breast cancer at age 29 and with a stage 4 recurrence in 2012 at the age of 31. She is a wife and new mom living in Dallas, and will be reporting frequently on her cancer experiences.RELATED POSTS
BY ELIZABETH WHITTINGTON | FEBRUARY 20, 2014
After more than a decade as the National Lung Cancer Partnership, the organization rebrands itself as "Free to Breathe," taking the name of its popular nationwide events.
The cancer community has seen rebranding of several non-profits over the years, whether it's to stay relevant to its audience or provide a more recognizable face to the public. It hasn't been that long ago that the Susan G. Komen Breast Cancer Foundation became Susan G. Komen for the Cure, taking the name of its long-standing and popular races. It has since become known simply as Susan G. Komen. In 2011, Gilda's Club and the Wellness Community came together as the Cancer Support Community, although you'll see that iconic red door of Gilda's, and her name, has remained in some communities.
I questioned why a lung cancer organization would drop the words "lung cancer" from its name. Did this mean it would focus primarily on fundraising for research as opposed to providing support services for patients? And how would that research funding equate into cures?
Thanks to Tracy Fischer at Free to Breathe for answering my questions.
What was the impetus for the name change from the National Lung Cancer Partnership to Free to Breathe?
Hundreds of thousands of people championing the lung cancer cause have come to know the National Lung Cancer Partnership through our Free to Breathe event series. After extensive research and analysis, we've decided to unite the efforts of our entire organization under the Free to Breathe name. Our research revealed that the name Free to Breathe resonates deeply with people whose lives have been touched by lung cancer. It inspires passion, dedication and hope. It is active, engaging, simple, and more clearly conveys who we are and what we do. Plus, it's easier to remember!
To make it clear that our organization is still 100 percent focused on lung cancer, we decided on the tagline "a Partnership for Lung Cancer Survival." This helps people who know us as "The Partnership" recognize our organization, and ensures our purpose and focus are clear to those just getting to know us.
How will Free to Breathe achieve the goal of doubling lung cancer survivorship by 2022? Is it by funding research or will Free to Breathe have a hand in directing specific research?
While our name has changed, our focus has not. We believe that every lung cancer patient deserves a cure, and we remain passionately committed to our vision of doubling lung cancer survival by 2022.
We will continue funding research in addition to helping people living with the disease understand their treatment options and benefit from innovative therapies, with a focus on molecular tumor testing and clinical trials.
While funding research is a key component of our program of work, it is not our only strategy. For example, in collaboration with several partners, we have developed a program to measure and reduce the time it takes patient to go from diagnosis to appropriate treatment (freetobreathe.org/research-grants/other-scientific-programs/access-tlc).
Free to Breathe also plays a crucial role in the administration of the Lung Cancer Mutation Consortium, a partnership of 16 cancer centers across the US working together to test patients' tumors for mutations and characteristics that can be targeted with very specific treatments. This knowledge will help doctors better understand which patients may benefit from which therapies, and help increase clinical trial enrollment which ultimately helps new treatments get to market faster. For example, the LCMC played a key role recently in patient recruitment for a study that led to a "Breakthrough Therapy Designation" from the FDA for a new therapy designed to target BRAF-mutated non-small cell lung cancer. This designation makes it easier for the drug to make its way through the FDA's testing and approval processes and get to patients faster.
Is Free to Breathe a research funding organization or lung cancer support organization? Do you work with other lung cancer organizations to promote awareness, advocacy, education and research funding?
While we don't offer direct patient support, we do offer many patient resources to help patients understand their treatment options and decide which treatment paths are right for them. Our website provides comprehensive information on the disease, diagnosis and various treatment options (freetobreathe.org/lung-cancer-info/understanding-a-diagnosis). We also offer a clinical trials matching service, as well as advocacy tools to help people recognize symptoms of the disease and raise awareness of its true impact. We empower people to get involved and bring the movement to double survival to their own communities through our nationwide event series and a community fundraising program: freetobreathe.org/get-involved
Realizing that collaboration is key to making substantial strides toward doubling survival, we work with other lung cancer organizations in many capacities. For example, this year, we're co-funding our second Impact Award with Uniting Against Lung Cancer. The largest scientific grant offered by both Free to Breathe and UALC, the Impact Award is expected to produce significant improvement for lung cancer patients within the next five years. We are also an active member of LungCAN, a collaborative group of lung cancer advocacy organizations that have come together to raise public awareness about the realities of lung cancer. You can read about other collaborations on our website: freetobreathe.org/about-us/who-we-are/collaborations.RELATED POSTS