BY LINDSAY RAY | APRIL 26, 2013
As I spend more time with oncology nurses, I continue to be in awe of them. I walked over to the conference this morning with a wonderful nurse who was just completely excited about learning more information and being able to take this information back to Indiana to better help her patients. That eager, helpful spirit permeates the vibrant atmosphere at the Oncology Nursing Society Conference. Nurses view themselves as partners with their patients during the cancer experience. And that is evident in the compassion and empathy they demonstrate for their patients.
For example, I attended an informal discussion about the challenges young adult cancer patients face. Nurses had gathered to talk about what exactly defines a young adult, the isolation young adults can feel by being treated in patient unit usually filled with older adults. And the topics of sexuality and infertility became a main focus. Nurses worked on identifying reasons why they might not bring up the topic of sexuality with their young adult patients--nurses might not know how to answer the questions, there could be an age barrier, they're unsure when's the right time to bring up the topic, etc. Figuring out the barriers to having this particular conversation is just one step closer to making this topic more open to patients.
But a recurring theme I have heard from nurses is that it's not only their responsibility to teach their patients, but they also have the opportunity to listen and learn from their patients. Working together patients and nurses can make treatment and quality of life during cancer better.RELATED POSTS
BY LINDSAY RAY | APRIL 25, 2013
Although I've worked with CURE for a few years, this was my first opportunity to actually attend our Extraordinary Healer award event. I've always heard that this event is special, but there's a difference between knowing an event is special and actually being there to experience that special moment. No words can quite capture the feeling that was in the room. And I'm rarely at a loss for what to say--words are kind of my job. But I can try to capture some small amount of what happened this evening.
It was moving to listen to honorary mistress of ceremonies Marlee Maitlin describe the many obstacles she's had to overcome to achieve her dreams of being an actress and the people who helped to shape who she is along the way. As she so thoughtfully pointed out, oncology nurses often serve as the people who help shape cancer patients lives--they help to heal, but also help patients find their own gifts and overcome challenges both personal and medical.
And while I had read the nominating essays, it was different to actually hear these words from the patients themselves. To stare into the nurses' appreciative faces. But mostly what made it special was that it was a shared experience. There were people to share in the laughter and the tears, people who know all about the circumstances being described.
So thank you to all the oncology nurses who were able to share this experience with us. And thanks to all the oncology nurses and patients and families who have shared so much of themselves and their experiences with us over the years.RELATED POSTS
BY SUZANNE LINDLEY | APRIL 23, 2013
Chloe woke up and climbed into our bed at midnight. I was just drifting off to sleep after hours of restless and unsettled thoughts and had hoped that she would simply fall asleep. Instead, she loudly proclaimed that she was starving. I watched her lay sullenly for a minute or two and then, with an exasperated sigh, she once again declared her hunger.
My mind was still far, far away and focused on the anguish that had laced these past few days. I couldn't stop thinking of my friend Annie, whose husband and little ones were discovering their first nights of life without her, of Gabriele's family and their loss, of Debbie and her loneliness without Skeeter, of the horror that unfolded in Boston, and of the explosive catastrophe in West, Texas. I thought of Jen and her vigil by Kevin's bedside and my prayers for his recovery. So much in the world not right. So many friends struggling. I had spent sleepless hours marveling at the strength that was surfacing amidst the grief and tumult of these tragic events----in the chasm of death, the loss of life, the devastation of a community and the ravages of cancer were signs of courage and faith. Yet I felt lost in the uncertainty and sadness life holds.
I listened for a minute more to Ronnie's even breathing. Then I gently kissed Chloe's cheek and hugged her tight. Reluctantly at first, I pointed to the door and grabbed her hand. We quietly padded down the stairs and tiptoed into the kitchen; her happiness evident as we decided that Spaghetti-O's and hot chocolate would make the perfect late night snack. We talked about her friends and what she was doing at pre-school. We chatted about Fancy Nancy and Doc McStuffins. She giggled and proclaimed that this was fun and just as suddenly that she was tired. We danced through the kitchen and back up the stairs. The world once again seemed right. I tucked Chloe in and a tear fell from my cheek to hers as I realized the beauty of our adventure. We had just shared all in the world that is certain...the gift of this moment.RELATED POSTS
BY ELIZABETH WHITTINGTON | APRIL 15, 2013
If not, that may change.
At the annual meeting of the American Association for Cancer Research, a committee of oncology thought leaders dedicated to examine the effects of tobacco and cancer, released a statement that calls for medical professionals to ask about tobacco use and provide easier access to cessation treatment for patients.
This isn't to create an even further stigma against patients with cancers that may be attributed to smoking, but to try to help patients quit and to better understand the effects of tobacco in cancer treatment.
Roy Herbst, who leads the AACR Tobacco and Cancer Subcommittee, says the conversation between physician and patient about tobacco use should be routine. "We always take a smoking history. It's very important to make sure that the patient doesn't feel any guilt or shame that they've smoked... but it's important to know."
Unfortunately, the message isn't getting through to patients. In one study, although 90 percent of medical professionals believe tobacco cessation should be a standard part of patient care, only 40 percent discuss and provide cessation support.
In a survey to National Cancer Institute-designated cancer centers, only 38 percent record smoking as a vital sign and less than half of the institutions have designated staff to help patients with smoking cessation. This is in comparison to 78 percent of centers having dedicated nutrition personnel.
While we can agree that both are very important to treatment and survivorship, why the gap in care?
Herbst explained some physicians don't ask their patients about smoking history or provide treatment because of various reasons, including not wanting to put additional strain on the patient. However, he says it is imperative physicians start the conversation because smoking can impact certain cancer treatments, comorbidities and surgery recovery.
The AACR statement also calls on the research community to ask about smoking history of clinical trial participants and evaluate subsequent effects on experimental treatments. The committee explained in its report that although most studies are not designed to examine the effects of tobacco use on these investigational therapies, "direct and indirect negative effects of tobacco use have the potential to confound the results of clinical research."
Of the 155 NCI cooperative group studies, fewer than a third actually record tobacco use and under 5 percent assess tobacco use at follow-up. Herbst says that is a lost opportunity for research and to help the patient, most of whom want help in quitting.
"It's incredible that this data is not recorded, and there's no intervention," he says. In his own practice, once he's able to identify patients who want help, he refers them to a dedicated staff at Yale that counsels patients about smoking cessation and provides treatment and counseling--something he hopes can be expanded to many other centers across the nation.
Benjamin Toll, who directs the Smoking Cessation Service program at Yale, says that first visit may be challenging, especially when understanding that the person may have just been diagnosed with cancer. "I try not to use the word 'quit' in the first meeting because it can be daunting. Instead, I say 'change.' The goal of the first meeting is to come back."
You can read a summary of the policy statement here: "Assessing Tobacco Use by Cancer Patients and Facilitating Cessation: An American Association for Cancer Research Policy Statement". Unfortunately, the full statement is under a paywall.
You can also read the AACR release here.RELATED POSTS
BY SUZANNE LINDLEY | APRIL 8, 2013
It's an ordinary day. The fatigue from my RFA (radiofrequency ablation) last month has subsided. The effects of chemo last week have disappeared and there are no appointments, labs or scans on my calendar for the next two weeks. Life is about as "normal" as possible for someone living with metastatic cancer. As I watch the tree branches rock and sway with the swirl of a spring wind through the kitchen window. I dream of things to do and adventures to take.
I dream of graduations, weddings, and the beginning of kindergarten...
I dream of springtime walks and the splendor of a sunset...
I dream of the ocean and hope in the sand...
I dream of riding horseback across an open field...
I dream of campfires and the magnificence of a moonlit night...
I dream of raindrops and roses, sunshine and sailboats...
I dream of Ronnie and walking hand in hand...
I dream of friendship and laughter...
I dream of magical memories of days gone by and of the mystery that tomorrow holds...
And I know that held within these dreams are the simple things that add a little extra to make this ordinary day - truly EXTRAordinary.
What will add the extra to your ordinary today?RELATED POSTS
BY ELIZABETH WHITTINGTON | APRIL 7, 2013
One of my favorite sayings at the American Association of Cancer Research is "...and you'll see the preliminary results at ASCO."
AACR is a little different from the large oncology meeting we attend in the summer--the American Society of Clinical Oncology or ASCO--because AACR focuses on all aspects of cancer research (from start to finish), whereas ASCO is mostly clinical research (the finish line). As it happens, ASCO news is typically AACR news a few years ago. It's a great place to get a pulse on where cancer research is heading. So, when I hear an AACR speaker tell us that we'll hear more results at ASCO, it lets me know that we're on the right track and the research is moving to the patient setting and hopefully the clinic soon.
While the road to cancer research is bumpy--an understatement--and we fail more than we succeed, I get the feeling this year holds a lot of excitement for the attendees. In addition to the standing-room only sessions and talks by this year's AACR Distinguished Public Service Award winner Katie Couric and Pulitzer Prize-winning author-oncologist Siddhartha Mukherjee, AACR also sets the stage for Stand Up to Cancer's annual Dream Team announcement.
An overall theme is emerging this year, and that is that we are beginning to research and treat the cancer as an organism – not in the fact that it's a living being, but as in we are looking at the entire picture, including the cancer's environment, how it interacts with other organisms in the body, what drives it, what makes it different, etc.
Mukherjee said in his talk that although we are finding that cancer is so much more complex and individualized that we ever imagined, the optimist in his says that there are still commonalities. He gave us a brief history lesson in showing that we have moved beyond merely finding cancer genes, but that we must now consider proteins, genomes, network interactions, and the cancer's physiological pathways in its environment.
One of Mukherjee's ending slides in his presentation was Barbara Bradfield – Patient 0 in the first patient clinical trial involving the HER2-positive breast cancer drug, Herceptin (trastuzumab). He reports that Bradfield, who continues to be a patient advocate and is living with metastatic breast cancer in Oregon, is a testament to cancer research. And the best of cancer research is ahead of us.RELATED POSTS
BY SUZANNE LINDLEY | MARCH 26, 2013
I have a thirst for wanting to accelerate medical research; a personal plea for more advances and greater funding that is instead threatened with huge cuts. When the drip of my chemo began 14 years ago I didn't think about the hard work, dedication and science that was behind my treatment or how many drips it would take to bring about a cure. I knew only that this scary concoction might prolong my life.
As new treatments were developed, I benefited but still didn't realize what was needed to get even one new treatment to my infusion room. I assumed that there would always be a treatment. I thought that there would be an easy fix. I know better now. For without research, I wouldn't be here today enjoying and harnessing the power of everyday life; creating extraordinary milestones out of ordinary moments.
I woke up this morning to what would have once been a normal day; a day pre-cancer that most likely would have been taken for granted. It is the everyday experiences provided to me through research that now bring me great joy. I listened to Chloe's steady breath, snuggled next to me after having made an appearance in the middle of the night. I let her sleep late while I, too, took in a few more minutes of rest. Today will be filled with everyday stuff and precious moments that interlace colorful life threads ... a lazy morning with my pre-schooler, lunch with Katie, texts with Karlie and dinner on the table when Ronnie gets home. ...finger painting, "Fancy Nancy," a quiet walk to the lake, a picnic and the grand feeding of the two resident ducks.
Spring is here and new life is budding on the trees. The season is awakening and I feel that I am, too.
Fourteen years feels like a breath, and like forever all at once. These years have been abundant with colorectal cancer research. Research that saved my life.
Tomorrow is chemo day. From the I.V. bag, slowly into the tubing and steadily into my veins I will watch the drip, drip, drip of research that will bring me even more time. I will be grateful that there are still treatments to receive. These treatments, procedures and clinical trials made possible because of cancer research have given me hope.
Twenty-eight million other Americans are counting on further cancer research to give them hope, too, but budget cuts at the National Institutes of Health (NIH) threaten those hopes and our lives. These cuts won't just affect those of us with cancer but will impede the research for every disease from Alzheimer's to Zellweger Syndrome (A to Z).
Your voice makes a difference. Join Rally for Medical Research and "unite with millions of Americans across the country to call on our nation's policymakers to make life-saving medical research funding a national priority. This unified call to action will raise awareness about the critical need for a sustained investment in the NIH to improve health, spur more progress, inspire more hope and save more lives. Visit Rally for Medical Research to get involved!
We need cures, not cuts!RELATED POSTS
BY KATHY LATOUR | MARCH 5, 2013
Since I am now 63, I have to keep reminding myself I am a "young" cancer survivor, meaning I was diagnosed under the age of 40. And I wish I had had Matthew Zachary and Stupid Cancer when I was diagnosed.
Zachary was in his senior year of college when he heard the call of the C word, learning he had a brain tumor. One of those survivors who took the diagnosis and decided to do something with it, he became a one-stop shop for the needs of young adult survivors with his OMG! annual meeting and the weekly Stupidcancer radio show on Mondays at 8 p.m. ET at stupidcancershow.org.
Zachary is committed to making the journey a little easier for the young adult population, who have a huge set of issues unlike those of their adult survivor counterparts. Think about it. What would cancer have done to you in your mid-20s. Reading some of the discussion lists on the Stupid Cancer site make me shudder at how isolating and difficult it is for this age group, who often have to move home with parents and seldom have insurance.
I did the Stupidcancer show this week, which Zachary does with Annie Goodman, another young survivor. I was on at the invite of Karen Shayne, who has put together the National Women's Survivor Convention in Nashville this August that promises to be a remarkable gathering of speakers and events. Shayne, also a young survivor who, like me is far enough out to be experiencing some of the gift that keeps on giving, talked about her own late effects on the show and her desire to empower women with this event.
Whether you are a young survivor or not, you might want to check out the stupidcancer show or go back to listen to some of the other shows on archive, including the one from last night (you can listen here).RELATED POSTS
BY KATHY LATOUR | FEBRUARY 28, 2013
I loved it when breast surgeon and breast cancer advocate Susan Love said she would rather talk about death than sex. I think it puts in perspective how very difficult it is to discuss something that has always been seen as mystical, and yet, as we all know, people who can talk about it have the best sex lives.
I say "people" because single people get cancer too. So, whether single or married or divorced or whatever, cancer changes our perspective on sex. When I wrote my book "The Breast Cancer Companion," I wanted to include sex because it had been an issue in my marriage and I knew it would be for other women.
What surprised me was the wide variation of responses that women and men gave me when I asked about sex. One woman said she and her husband had become so close during the cancer experience that she was having trouble relating to him sexually, and another said she refused to talk about sex because they never had. It had been the one thing in their marriage that worked without words or communication of any kind and now the deal had changed and she was angry.
For men who get cancer the issues can be the same or different. Some men see it as their place to take charge in the bedroom, and if they feel diminished physically because they don't feel well or they have had to let their wives take care of them, they may have trouble finding their role again.
The bottom line is that cancer changes us, mentally, physically, emotionally, spiritually and if you look at that list, each of those facets is part of sex. It also changes our partners who will, perhaps, see us differently than they ever have. How these changes play out in sex will depend on the two people who have gone through the experience and their commitment to the relationship and each other.
For single people it's a whole different ball game as they try to find a life partner with the added chapters of their life that cancer brings. Fertility may be affected by cancer, and there is always the question, "So when do I tell him or her that I have had cancer."
Talk to people who have been there, get help to find your way, every piece of advice comes from a core message: communicate. Communicate with your partner, your potential partners, yourself.
We have done a number of stories about sex in CURE. Go to www.curetoday.com and put sex in the search field and have fun.RELATED POSTS
BY JON GARINN | FEBRUARY 22, 2013
In our winter 2011 issue, we wrote about "financial toxicity" being an unwelcome side effect of cancer care, noting that even insured patients are increasingly going bankrupt because of soaring out-of-pocket expenses. It seems like nearly every day we hear another terrible tale of someone's financial hardship, and many of our readers have asked us to dedicate more coverage to the cost of cancer and practical steps patients can take to cope with it. Look for a special extended report on the subject with our fall issue.
In the meantime, don't miss a word of Steven Brill's brilliant cover story in the current issue of Time magazine. Consider it a staff recommendation. In fact, it should be required reading for every American.
Why? Because knowledge is power.
To say it's an eye-opener is an understatement. Be warned: The piece is hefty--weighing in at more than 20,000 words--so you might want to take it in manageable doses. But do take it. Think about it. Discuss it. Because until we make a brutally honest assessment of why the cost of health care is so high, we won't be able to do anything about it.
Brill begins with a fairly simple premise: The problem with health care in America isn't so much about who should pay for it but how much it costs. He begins by looking at hospitals, starting with nonprofit institutions, where profits are huge and patients get gouged. Astronomical markups on everything from high-tech medical devices to humble gauze pads are simply beyond comprehension. Insurance companies and Medicare are best positioned to bargain with healthcare providers so that patients don't pay these insane prices, but pity the poor souls who are uninsured or underinsured. By telling the stories of several patients and examining their medical bills, Brill spotlights everything that is wrong with our healthcare economy .
Surprisingly, Medicare withstands the scrutiny. In fact, it works so well that Brill makes the case for lowering the enrollment age to include near-retirees. I think the case could be made to either open up the program for anyone who wants to buy into it or simply turn it into universal health care. As Slate's Matthew Yglesias observes, "Taxes would be higher, but overall health care spending would be much lower since Universal Medicare could push the unit cost of services way down."
In addition to expanding Medicare coverage, Brill also offers a number of other solutions, such as reforming medical malpractice, taxing operating profits and imposing price controls--all good ideas, but highly unlikely. And until more Americans get involved and recognize the core problem, which Brill describes as "lopsided pricing and outsize profits in a market that doesn't work," nothing will get fixed. While Obamacare has "changed the rules related to who pays for what...we haven't done much to change the prices we pay," he concludes.
A few take-aways:
You will never look at a hospital bill the same way again. They've become so indecipherable with codes and acronyms that an entire cottage industry has sprung up around helping patients understand what they're being billed for.
If you're paying out-of-pocket costs for your treatment, negotiate with your doctor. Ask questions and discuss specific treatment and testing options with your doctor. Less expensive options may be available that can prevent you from hitting your insurance limit.
Don't be afraid to barter over the bill. Most billing representatives won't volunteer the information, but nearly everything is negotiable. Ask about charity programs, affordable payment plans, self-pay discounts and financial assistance. Do it before the bill gets turned over to a collection agency, when you still have room to negotiate.
When all else fails, turn to a billing advocate or a claims assistance professional. Among other things, these independent contractors can review medical bills and determine proper payment, negotiate with providers, resolve claim problems and audit fees and charges.RELATED POSTS