BY KATHY LATOUR | OCTOBER 26, 2012
In the past few years October has become a flash point about the differences that have arisen in the breast cancer advocacy arena.
As I have looked back at my 26 years of survivorship, it makes me sad that we have come to a time when there are those who lament that breast cancer awarness month is here because it points to conflicts among those who have made breast cancer their life's work. They don't like the pink ribbon for one reason or another and are angered that they feel their disease has been usurped by some for marketing purposes.
Maybe it was easier when we were all fighting for recognition of the disease. Then there was a sense that we were all connected by the common scar of breast cancer.
In 1999 I joined thousands of others in Washington,D.C. in October to ask for a national strategy to end the breast cancer epidemic. It was the first time I had ever joined women from around the country to march for something that I felt so strongly about. We marched past the White House holding signs, some of which asked for research dollars, others telling personal stories of mothers or daughters lost to this disease. It was a first for the young movement.
One young husband carried a sign with a photo of his wife that simply said, "Too Young To Die."
We were Black, White, Brown, Asian, young, middle-aged, and elderly. It was clear that we represented every socioeconomic group and were decidedly bipartisan.
We chanted together, cried together and got angry together. We were bound by a common experience. We were bound by a common scar, which seemed to thread endlessly through the crowd, linking us together.
I remember thinking then that in only a few days October would end and breast cancer would no longer be daily news. No longer would the media surround the cause and publicize our stories. The spotlight would turn to other events, but the disease would go on, marching across the country, extending the pain that linked us.
Today, women still die of breast cancer in the tens of thousands. But the small percentage point drops have been touted as significant. Yes, we have made small headway. But not nearly as much as we should. The difference is that while more women are being diagnosed with breast cancer, more women are surviving.
I guess that makes the 39,920 women who are expected to die from breast cancer in 2012 less visible except to the ones who love them.
I wish we could turn our focus back toward them during October.RELATED POSTS
BY KATHY LATOUR | OCTOBER 22, 2012
For two days last week I was surrounded by attendees at the FORCE, Facing Our Risk of Cancer Empowered, conference in Orlando. The topic of discussion was hereditary cancer, primarily those living with the BRCA 1 and 2 mutations that cause breast and ovarian cancer.
This year there are around 600 gathered from around the world (12 countries) to explore topics related to living with the hereditary cancer experience: risk, surgical options, surveillance, advocacy, and talking with family. It's only at this conference that you hear the term "previvor" for those women and men who carry the BRCA mutations but have not had cancer – primarily because of the preemptive strikes of hysterectomy and bilateral mastectomy.
Family dynamics were everywhere at FORCE because someone in the family had to be the first one to learn of the mutation, and then he or she had to decide what to do with the information. While that may seem to be a fairly clear issue to most readers, it's one that can be extremely complicated by family dynamics, history, insurance, and fear.
In some instances the mutations have drawn families together to learn more for themselves and their children. In other instances, the mutation becomes the family secret – a secret that can kill. More than once I heard someone ask what to do when a family member refused to admit to themselves or have a child tested when he or she was positive for a mutation.
At the networking lunch I sat with two different groups. The first table was parents with BRCA mutations who were discussing how they told their children – or didn't. One mother, who carried both BRCA 1 and 2, broke my heart. She had known since her diagnosis of breast cancer at age 34 that she carried the mutations. At the time of her breast cancer, her daughters were 1 and 3. They are now 17 and 20 and she still has not told them. She sat and listened to the other mothers talk about the reactions from their children, and it was clear to see that she was terrified how her daughters would react to the news that they had a 50 percent chance of carrying the mutation, and that would mean choosing to lose their breasts and having a hysterectomy to ensure they would not get cancer.
Imagine trying to tell your daughters this news when they are dating or falling in love and then they have to pass the news along to their potential husband. She had come to the FORCE conference to get help and was going to attend a workshop on telling children that afternoon.
Janet, a breast cancer nurse at the time of her own breast cancer diagnosis, was tested for the mutation because of her relatively young age at diagnosis. When the results came back positive, her mother immediately said it was her father who was to blame since there was cancer in his family not hers. Janet was shocked, as was her younger sister, and both were angry with their father who knew there was "woman" cancer is the family but never thought it was anything to talk about. Her sister has still not forgiven him.
Janet has told her daughter and son they will need to be tested at age 25, the age recommended. Before that she wants to be sure they have life insurance and a good job. Another mother commented on the pressure it puts on their children to get their lives started early so they can get life insurance, which, unlike health insurance, can be denied based on hereditary cancer risk.
From that table I moved to another that was supposed to be for men with the mutation. I took the only open seat at the table and found myself surrounded by a whole family – four siblings and their spouses. The siblings – two brothers and two sisters – were all positive for the BRCA 1 mutation that was discovered when one sister decided to be tested. Their mother had died of ovarian cancer 16 years ago and one of her sisters had died of breast cancer. Her husband was completely in favor of the testing after watching what his mother in law had gone through. The other siblings were tested after their sister was found to be positive. One sister had already had bilateral mastectomy and hysterectomy, the other sister was planning her surgery.
It was time to move to the next breakout session and the family was dividing up the breakouts to take notes as they moved away from the table. Their choices: reconstruction options, screening after mastectomy, sexuality and body image, communicating with family members, understanding risk, or ovarian cancer survivor networking.RELATED POSTS
BY JON GARINN | SEPTEMBER 24, 2012
It's been nearly 30 years since my dad died from lung cancer. I never realized how memories of his unwillingness to stop smoking would still have an impact on me today.
Yet while our editorial team was discussing a lung cancer feature we're planning for next summer, Kathy LaTour's suggestion that we include a sidebar with tips on how to stop smoking drew from me an unanticipated response: I was incredulous.
How, I wondered, could smoking cessation tips have any impact on people determined to continue smoking even after receiving a lung cancer diagnosis? If they are addicted and determined to continue smoking, then no amount of advice we could provide would make any difference, I opined. It would just be a waste of space.
After much debate about the merits of including such tips, it suddenly occurred to me that my resistance to the idea was based on my caregiving experience from so long ago. I hated the fact that Dad kept smoking throughout his treatment and until his death. He was fiercely determined to beat his cancer, but he was also stubbornly opposed to breaking the habit. His brother continued to smoke through his tracheotomy tube, despite the ravages of throat cancer. My mom still smokes, and grows belligerent if anyone dares suggest she give up one of the only things that she enjoys.
Fortunately, my colleagues helped be recognized my transference. That was then; this is now. There are a lot more smoking cessation tools and assistance programs than there were 30 years ago. And it's unfair to our readers to assume they'll be as intransigent as my father or my uncle or my mother.
Without question, more can be done to help people stop smoking (the challenge is even greater among certain minority populations, as we reported on several years ago). And practical advice always trumps platitudes about willpower. Our commitment is to continue providing the very best information backed by science, even when that commitment is driven by a three-decade-old wish that didn't come true.
November is Lung Cancer Awareness month. Consider some of the facts about the disease:
BY KATHY LATOUR | AUGUST 17, 2012
In this issue of CURE you will read about a young woman named Diana DeVoe who was diagnosed with rhabdomyosarcoma at age 19. Now 42 and suffering from chronic pain due to neuropathy associated with late effects of the drugs she was given, DeVoe has found a gift in the suffering she has experienced in the last seven years. It's strange how suffering sometimes breaks through the resistance to feeling.
Rhabdomyosarcoma is a malignant tumor of the muscles that are attached to bones and can occur in many places in the body. Its cause is unknown and it most often affects children. It popped up on DeVoe's left hand during her first semester at college, appearing as a knot between the knuckles.
She didn't know when she went home for Christmas break that year that her life would never be the same, and that the next two years would be a marathon of surgery to remove the tumor and two of her fingers, chemotherapy with some of medicine's strongest drugs, and college, a supposedly carefree time that wasn't.
Emotionally she dealt with it the way many young adults do, by pretending it didn't happen and isolating from friends and family. DeVoe told new friends in her life that she lost her fingers in a car accident.
After graduation she moved from the Midwest where she earned her degree to Dallas to work for a large hotel chain where she would help open new hotels for the next 20 years or so.
Relationships didn't happen; she kept people at arm's length – always using the good hand.
Then she hit a wall when at age 36 she began experiencing neuropathy in both feet. It's hard to describe neuropathy. First it was numbness, then it was pain, pain that kept her from driving for more than 10 minutes at a time. A plethora of doctors and drugs didn't help until she saw Angela Orlino, MD, director of the young adult program, After Cancer Experience (ACE), a survivorship program of Dallas Children's Medical Center and the UT Southwestern Medical Ceenter, the oldest AYA program in the country.
It was time to stop hiding and call herself what she was – a cancer survivor. Since you can read this whole story yourself in the magazine, you may be wondering why the blog. This is why. Orlino needed to know what drugs had been used to treat DeVoe, who was fairly sure they were called doxorubicin, vincristine, cyclophosphamide, and cisplatin. The doctors were asking so she called the hospital where she was treated, which didn't help. The records were on microfiche -- somewhere.
Today when you finish treatment, you should get a Survivorship Care Plan that gives you specifics on which drugs you got and how much. It should also document radiation if you had any and all unusual issues surrounding your diagnosis and treatment. Unfortunately, while the healthcare system has made progress in providing Survivorship Care Plans, they haven't made enough. Few cancer centers have begun the practice.
In the winter issue of CURE you will learn how to be your own advocate and how to put together your own care plan. We are giving you the list of items you need to find out and some suggested ways to document these as well as some additional pieces of information you may need to ask your medical or radiation oncologist.
Today, DeVoe is spreading the word to other adults in the ACE program not to shut down like she did but to move on, and to take their care plan with them.RELATED POSTS
BY ELIZABETH WHITTINGTON | AUGUST 7, 2012
Recently, I've been following the journey of Joanna Montgomery, a new mother recently diagnosed with stage 3 fallopian tube cancer. Produced by Cafemom.com, the short videos detail her life as she and her husband care for daughter, Grace, while she undergoes treatment for cancer.
After a high-risk pregnancy, Joanna gave birth to a healthy baby girl. It was during the c-section that her doctor noticed something odd on her fallopian tube, a mass the size of a softball.
"I don't think it's cancer," the doctor told her, it may be twisted. "Cancer? Why would you even say that?" thought Joanna.
The day after they brought Magnolia Grace home she learned it was malignant. "Here we were holding this six-day old baby, who is so perfect, and it just seemed so surreal," she says in the video. "We had been so happy and excited and it just seemed like a punch in the gut."
Shortly afterward, Joanna had aggressive surgery and chemotherapy. "If you had asked me five years ago what I would do if I had cancer, I might have said that I'd first try to address it holistically," she says. "However, with a new husband and a new baby, I wasn't going to take any chances." Joanna underwent a full hysterectomy and began treatment, while also making holistic lifestyle changes.
Her oncologist leveled with her and said her chances were 50/50. "On paper it might be 50/50, but I think it doesn't take into account all that I have to live for," she says.
Shortly after her diagnosis, Joanna started a blog called itscancerbaby.com to allow friends and family to follow the family's experience with cancer and bringing home Grace.
"Once I started blogging, I started experiencing two things: One, an instant community of people - others fighting cancer and otherwise touched by cancer - who knew exactly what I was going through," she says. "Second, I realized that I was helping others by sharing my experience in real-time. And this realization came with it a sense of responsibility - to be mindful and positive, as others were listening. "
CaféMom has produced the series of videos. I've included Episode 1 below. They run about five minutes.
Take a few minutes to watch them and let us know what you think. Joanna is incredibly honest in the videos and is open to taking questions from other patients, survivors and caregivers.RELATED POSTS
BY KATHY LATOUR | JULY 24, 2012
My friend Karen turned 56 yesterday, and it was quite the celebration. Karen had been waiting for four weeks to begin a clinical trial for a new oral drug that might slow the growth of her stage four endometrial cancer, and she had finally been cleared to start. It was the best present she could get.
After 25 years of phone calls from friends with the news that they had been diagnosed with cancer, I didn't think I could be surprised anymore. But when I heard in January that Karen had advanced endometrial cancer, it was really a shock. I have known Karen for more than 30 years. We met and became friends through the the Dallas nonprofit sector where she was a development director before working for a Dallas foundation in programming before managing a family foundation and now in her current job as CEO of an international medical foundation, a job that combines her love of science and her ability to bring people together to master a challenge. The shock of her diagnosis came because, even though I know that cancer is an equal opportunity disease that strikes without rhyme or reason, Karen is one of those people who has always cared for her body. She has eaten the 'beat cancer diet' since I have known her (lots of fruits and veggies), has always exercised, does yoga, and, in addition to working on her body, has done her head work as well as her heart and soul work.
As I like to say when I give my highest compliment, she is a grown up emotionally.
And it is a bad cancer. Initial debulking left her free of cancer for only a matter of weeks before pain and another scan showed it was back in all its fury. Six rounds of the trifecta of nasty drugs beat it into submission – but again, within weeks of the end of chemo in June, it was back. Karen has said from the start that she isn't afraid to die, she just feels like it's not time. And her oncologist agrees. The Phase II clinical trial has shown good results and some remarkable results, results Karen hopes she will be a part of. And yet, she knows that reality says she may not respond. With the first dose of the drug she begins the odyssey of living in hopeful reality where she is fighting to live while preparing to die. It's a place many of you know.
I plan to keep up with Karen and let you know how she is doing – and offering you her advice on how to live in the valley of the shadow of death. Let us know how you're doing too.RELATED POSTS
BY JON GARINN | JUNE 24, 2012
Now that I'm approaching 50, I'm like most men my age: confused. Should I get a prostate-specific antigen (PSA) screening test?
The U.S. Preventive Services Task Force recently finalized its decision to discourage the use of PSA testing as a means of detecting prostate cancer. And although the American Urological Association and the National Comprehensive Cancer Network recommend that men start being screened for prostate cancer at age 40, I know that after age 50, the chance of actually getting prostate cancer increases substantially.
The 80/80 principle
Let's face facts: For most men, prostate cancer is almost an inevitability. I spoke to a cancer researcher from Pennsylvania at this year's American Society of Clinical Oncology meeting who said the media doesn't often report on what most oncologists know--that 80 percent of men who reach age 80 will have prostate cancer. They'll likely die of something else before the generally slow-growing tumor metastasizes. So what does a man do, then, if he's an active 81-year-old, like billionaire investor Warren Buffet? Opt for aggressive treatment, with its potentially debilitating side effects, or choose active surveillance?
Tip of the iceberg
A PSA test wouldn't be my first exposure to prostate cancer screening. I've been having the digital rectal exam (DRE) as part of my annual checkup for a few years now. (For the unenlightened, the DRE is a less than pleasant experience, one that I refer to as the "cold jelly" exam. As part of my annual physical, my doctor inserts a gloved, lubricated finger into my rectum to feel the surface of my prostate. Just before commencing with the DRE, he announces, "cold jelly!" with the same urgency that I'm sure Frederick Fleet used to warn the officers on the bridge of Titanic that there was an "Iceberg, right ahead!") And there's certainly no danger in getting a PSA test--it requires nothing more than a simple blood draw. So why all the fuss?
Ratcheting down the rhetoric
Prostate cancer is the second leading cause of cancer death in men. There's no denying that the death rate from prostate cancer has declined--by 44 percent in the last 20 years. Survival rates over the same period have nearly doubled, from 53 to 98 percent. Can this be attributed to PSA screening alone? Or might it have something to do with increased awareness? Or with more men having serious discussions with their doctors about a cancer that, at one time, was rarely talked about?
The only tool we've got
The other day, as I was standing in line at the supermarket checkout, the young cashier asked me if I wanted to donate $1 to help find a cure for prostate cancer. I would rather donate $1 to find a better diagnostic test. The PSA test is fraught with problems. Any number of anomalies could account for the result. But for now, it's the only tool available. We simply don't have any other reliable way to distinguish between men who have indolent and aggressive cancer.
So, I guess I'll roll up my sleeve and get the test. If my results warrant a conversation, I'm confident that my doctor will help me understand the risks and benefits involved. One thing in my favor is that I don't have a history of prostate cancer in my family, so a high score wouldn't necessarily mean I should risk getting a biopsy, but that I should establish a baseline and test again at a later date.
A cure at any cost
We live in a "cure it if you can" culture, which means people who have the means to do so (and many who don't) will insist on going to extremes to cure an illness--especially cancer--if it can be cured. But when it comes to prostate cancer, the cure is sometimes worse than the disease. That's a risk I'm not yet willing to take.
BY DEBU TRIPATHY | JUNE 14, 2012
So how does T-DM1, an investigational agent that attaches Herceptin to a toxic drug, stand up when tested against the current treatment for cancer already progressing on Herceptin?
Well, it's been quite a busy time at ASCO, a lot of advancements on many fronts. The first and foremost is a new HER2-targeted therapy called T-DM1. This is for patients with HER2-positive breast cancer.
We've known for many years that the antibody Herceptin can clearly improve outcome in early stage and can even improve survival in advanced stage. However, in advanced breast cancer, most patients eventually progress.
In addition to Herceptin, there has been one other FDA approval, a drug called Tykerb, or lapatinib. When combined with a chemotherapy called Xeloda, it can delay progression, but it hasn't shown to improve survival. So, we're still in need of better therapies for HER2-positive advanced breast cancer.
This new drug, T-DM1, uses the Herceptin antibody, but it's bound to a very toxic drug. This drug couldn't ordinarily be used alone because it has too many side effects, but when it's bound to the Herceptin antibody with a linker, it works like a Trojan horse. It gets internalized into the tumor cell and induces cell death.
This drug was earlier found to be effective in patients who had already progressed on Herceptin and Tykerb, but the FDA did not want to use this data alone to approve the drug. The FDA wanted to see a randomized trial, and then it wanted to see a survival advantage. So, it took another two years to get the trial done.
The researchers compared T-DM1 to Tykerb and Xeloda, and the results of this trial show a pretty dramatic benefit. There was about a third longer time to progression in patients receiving T-DM1 compared with Tykerb and Xeloda. There also seems to be a survival benefit, but it's too early to fully confirm it. However, the way the data is panning out, it almost will certainly show a survival advantage. Most of us think this will be sufficient to get the drug approved, but we'll have to see if that's the case. It will certainly change the treatment approaches in treatment of HER2-positive breast cancer.
There are also combinations with T-DM1 being tested. We've mostly heard about safety data, not effectiveness just yet. We know we can combine it with the chemotherapy Taxol, and it appears to be safe. There is a large randomized trial combining T-DM1 with another drug called pertuzumab. This is an antibody, when combined with Herceptin, appears to improve outcomes in first-line therapy, whereas T-DM1 was tested in second-line therapy.
Finally, as one might expect, there are trials designed to look at T-DM1 in early-stage breast cancer. We know the best we can do for patients is to prevent metastatic recurrence in the first place, so we're putting a lot of effort into treating early-stage breast cancer. No results yet, though; it will probably take a couple of years for that data to emerge.
When you look at the big picture, you have to recognize that HER2-positive breast cancer 20 years ago was considered the most aggressive type of breast cancer. Now it's one of the better types of breast cancer because we have effective therapies for it. But there is still a lot of room for improvement. We're still not curing advanced HER2-positive breast cancer.RELATED POSTS
BY KATHY LATOUR | JUNE 6, 2012
Everywhere you turn is new information on the importance of rehabilitation in the cancer experience.
In the feature I did for our summer issue on the importance of rehabilitation for all cancer types, I tried to stay away from breast cancer since that's the association we have already, and my point was to show that rehabilitation is critical for everyone and every cancer.
Then the journal Cancer came out with a supplement devoted to refocusing on the importance of rehabilitation for women with breast cancer – even expanding it and adding exercise – and we are again seeing that rehabilitation is important for all of us to keep our muscle tone and strength, and regain and, in some instances, begin using and getting our bodies in shape. (You can read the supplement online for free at http://onlinelibrary.wiley.com/doi/10.1002/cncr.v118.8s/issuetoc .)
Arm exercises weren't even something my medical team mentioned when I had a mastectomy 25 years ago. The Reach to Recovery volunteer told me how important it was to do the "walk up the wall" exercise in the shower to stretch out my arm to keep scar tissue from forming, but I have to admit that I was only thinking about picking up my 1-year-old just as soon as possible. Some women have told me that their surgeons told them not to lift anything over five pounds, but mine didn't. I don't think she agreed with that five-pound limit even 25 years ago. So, as soon as I could, I had my baby in my arms and my butt in a swim suit.
I was a committed swimmer when I was diagnosed. As many days a week as I could, I hit the YMCA pool and did laps in the moderately slow lane. I found I could meditate and empty my mind when swimming and one of my biggest fears was that breast cancer would end that. When the drains came out I asked my surgeon how soon I could swim again. I didn't have to worry about messing up reconstruction because I hadn't had any. They said they wanted me to wait a while because I was going through chemo (I always felt like they wanted to see if I would live so I wouldn't waste anyone's time or money).
She said I could swim in a week after the drains came out and then as often as I felt like it since I would be starting chemotherapy. So I got a few good swims in before I started chemo, and then maybe one or two on the week when I didn't feel like I was starring in one of those zombie movies.
Finally, when I was feeling well again, I was hitting the pool regularly. I took the little fiber-filled thingy that Reach to Recovery gave me and sewed it in my swim suit where my right breast used to be. The only problem was that it got saturated with water and continued to drip when nothing else did, so I got in the habit of just reaching over and wringing it out when I got out of the pool. Well, that got a few looks, I'll tell you.
It got harder and harder to swim regularly over the years, but I have always had full range of motion and never lost any of my upper body strength. My surgeon and I have talked since then about swimming and how, even after I got lymphedema from a hang nail (yep, a hangnail), when I swim regularly I can keep it from swelling and get it almost to the same size as the other arm. And it sure feels better.
The message here is that if you feel you can't move like you should, get a referral from your oncologist or your primary care physician for some rehabilitation and let them help you get moving. Check with your local Y to see if they have the LiveSTRONG at the YMCA program where you get 12 weeks of classes designed just for cancer survivors.
Dr. Julie Silver, a breast cancer survivor and physiatrist (rehabilitation doctor) at Harvard Medical School says it's time we stop coming out of treatment and saying that we accept a new normal of a less physical life until we have given rehabilitation a chance to get us as close to the old normal as we can get.
And let's face it. Some of us need to toss the old normal for a new one that includes exercise and setting a good example for the next generation.RELATED POSTS
BY JON GARINN | MAY 19, 2012
I'm a big fan of filmmaker Ken Burns, so I was eager to see a new profile of him in The Atlantic. His films on The Civil War, Baseball and Jazz have not only provided a window into America's history for generations of viewers but also introduced the "Ken Burns effect" to documentary filmmaking.
When asked about his insights into storytelling, he revealed a deeply personal motivation: his childhood experience of his mother's cancer.
"I don't know why I tell stories about history. I mean there are kind of classic, dime-store Ken Burns 'wolf at the door' things. My mother had cancer all of my life. She died when I was 11 and there wasn't a moment from when I was aware, 2 and a half, 3, that there was something dreadfully wrong in my life. It might be that what I'm engaged in in a historical pursuit is a thinly or perhaps thickly disguised waking of the dead. That I try to make Abraham Lincoln and Jackie Robinson and Louis Armstrong come alive and it may be very obvious and very close to home who I'm actually trying to wake up."
He goes deeper still. "We have to keep the wolf from the door. We tell stories to continue ourselves. We all think an exception is going to be made in our case and we're going to live forever. Being a human is actually arriving tat the understanding that that's not going to be. Story is there to just remind us that it's just OK."
Burns' reflections dovetail with insights from Tani Bahti, a hospice nurse we interviewed for a story on caring for a loved one who has decided to end treatment. Look for it in our summer issue.RELATED POSTS