Happy Thanksgiving from Susan

  Wishing everyone a very Happy Thanksgiving! I love this holiday! Always filled with family, good stories, good food and very good times. I...

Friday, December 27, 2013

Researcher Informs College-Age Women About Breast Cancer Risk Factors

Lifestyle factors can affect a young woman's risk of developing breast cancer.
Even though women are at a higher risk of developing breast cancer at the age of 40, the disease often appears more aggressively in younger women. In an effort to reduce the number college-age women developing breast cancer, Isabelle Mercier, a researcher at the University of the Sciences in Philadelphia, compiled a list of lifestyle risk factors.
Weight
Weight can have an impact on your chance of developing breast cancer. According to Mercier​, up to 20 percent of cancer-associated deaths can be attributed to obesity. Fat cells provide a stable environment for tumor cells to thrive. 
Alcohol
Mercier cites research conducted by the Washington University School of Medicine that showed women who consume one alcoholic beverage a day increase their risk for breast cancer by​ 11 percent. This is because the drinks have "estrogenic activity," which is known to promote the growth of tumor cells.
Exercise
At least 2.5 hours of exercise per week can help women reduce their risk of breast cancer by 18 percent, according to Mercier. 
Tobacco
It's often advised to avoid smoking tobacco to keep your lungs clean and healthy, yet it can also affect a woman's chance of developing breast cancer. Those who pick up the habit early in life have an increased risk of developing the disease.

Read more at http://supportthefightagainstbreastcancer.com/researcher-informs-college-age-women-about-breast-cancer-risk-factors/#gKgeTyGg2fkMBmWa.99

Thursday, December 26, 2013

Resources to Ease the Financial Burden of Cancer

Although the struggle to pay for cancer care may be realized after treatment has ended, it’s best to take a proactive approach. Ask your medical team if there is a patient navigator or social worker at your hospital or clinic that is available to help with financial issues as soon as possible. You can also ask about patient assistance programs through various cancer-related nonprofit organizations or the companies that make your cancer treatments. And don’t be afraid to ask for help from family and friends. Often they want to help, but don’t know how.
Here are a few resources to help with the financial impact of cancer care, from organizations that can help pay for medication to websites that make it easy to organize fundraising and caregiving help.
CarePagescarepages.com 
Provides personalized websites and blogs that connect friends and family during a health challenge.
CaringBridge caringbridge.org A free service that provides personalized web pages to help keep friends and family informed of life events.
CancerCare Financial Assistance 
cancercare.org/financial Offers limited assistance for cancer-related costs and professional oncology social works to help find additional resources.
Give Forward 
giveforward.com Offers patients and caregivers a way to develop personalized fundraising web pages to help with the medical and household costs from cancer care.
Lotsa Helping Hands 
lotsahelpinghands.com 
Provides a way for friends and family to pitch in with tasks, chores and errands during a crisis.
National Council on the Aging 
benefitscheckup.org 
Finds programs that may pay the cost of prescriptions and health care services for people age 55 and older.
NeedyMeds 
needymeds.com 
Information on patient-assistance programs designed to help those who can't afford their medications.
The Partnership for Prescription Assistance 
pparx.org 
The Partnership for Prescription Assistance helps qualifying patients without prescription drug coverage get the medicines they need for free or nearly free.
Patient Advocate Foundation 
patientadvocate.org 
The PAF provides education, legal counseling, and referrals to cancer patients and survivors concerning managed care, insurance, financial issues, job discrimination, and debt crisis matters.
Patient Assistance Programs 
curetoday.com/assistance_programs CURE provides a list of assistance programs from nonprofits organizations, pharmaceutical companies and institutions.

Is Robot-Assisted Surgery the Best Treatment for Your Cancer?

Consider all factors when deciding on a surgeon and a surgical technique for your cancer surgery.
As a cardiologist, David Martin is accustomed to reading scientific studies. So when he received a prostate cancer diagnosis in October 2012, he pored over the medical literature to learn as much as possible about his treatment options. Martin, from Medford, Ore., was 50, and with a wife and three sons, he wanted to maximize his chances of having the tumor permanently eliminated, while minimizing his chances of complications. These complications, such as erectile dysfunction and urinary incontinence, occur at rates Martin found to be “disturbingly” high.
As a result of his research, Martin ruled out radiation therapy because the complications can tend to show up later on. Instead, he opted to face the issue upfront. “I wanted to get it treated and move on with my life,” he says. That meant he would have to undergo a radical prostatectomy, either by regular open surgery or by minimally invasive surgery, using a laparoscope (a thin tube with a light and lens at the end) or a robotic surgical system.
David Martin carefully considered all his options before choosing robot-assisted surgery for his prostate cancer. Photos by Christin Szczesniak.
Many prostate cancer surgeries are now performed using robotic systems, and they’re increasingly being used in other cancers, too, including gynecologic, head and neck, and thoracic. When performing an open operation, the surgeon makes an incision large enough to see into the body. In a laparoscopic procedure, the surgeon directly manipulates special instruments through small incisions. With robot-assisted surgery, the incisions are still tiny, but the surgeon sits at a console to perform the procedure by directing the robotic arms. This process enables finer movements yet prevents the surgeon from feeling the tissue in the same way as in open surgery.
When performed correctly by well-trained surgeons in appropriate patients, robot-assisted procedures have the potential to prevent short-term complications, such as blood loss, and to reduce the length of hospital stays, compared with open surgery.
Weighing the Benefits
Even with all the potential benefits, there exists little research proving that robot-assisted surgery can improve long-term outcomes compared with open or laparoscopic surgery. There is also a lack of trials comparing this surgery with laparoscopic procedures. Moreover, robotic systems are expensive. According to a recent observational study, robotic surgery systems add about $2,200 to the cost of a hysterectomy for a benign condition. (These extra costs are generally absorbed by the hospital, with insurers and patients paying the same amount for the procedure regardless of whether the surgeon uses a robot.)
We think there are some areas where there’s currently a benefit, some areas where there’s probably a future benefit, and many areas where there’s no clinical benefit.
—Martin Makary
Still, the few studies concerning this surgical technique are promising. A 2012 review of robot-assisted oncologic surgery reported that observational and population-based studies demonstrated fewer surgical complications for some robot-assisted procedures that have been in use for more than five years, including prostatectomy and bladder removal. For robot-assisted radical prostatectomy, the review found that oncologic outcomes were “at least equivalent” to open approaches, with improved rates of decreased surgical complications compared with both laparoscopic and open surgeries. But comparisons of long-term oncologic and functional outcomes—such as incontinence—are “sparse,” according to the study’s authors.
“We think there are some areas where there’s currently a benefit, some areas where there’s probably a future benefit, and many areas where there’s no clinical benefit,” says Martin Makary, a surgeon at the Johns Hopkins Hospital in Baltimore, who has researched robot-assisted surgery. The challenge is determining which technique will benefit a particular patient.
Surgeons using robotic systems say they can perform minimally invasive operations that would be very difficult or impossible using a traditional laparoscopic procedure. “When you do laparoscopic surgery, you have a hole in the patient and use long instruments, using part of the body as a fulcrum,” says John Meehan, a surgeon at Seattle Children’s Hospital in Seattle. “With the robot, you get 3-D vision and instruments” that bend or hinge like a real arm, he explains. Some surgeons also point out that it’s more comfortable to sit at an ergonomically designed console versus standing at a patient’s side maneuvering awkwardly with laparoscopic instruments. These ergonomic benefits are believed to reduce surgeon fatigue and potential technical errors, particularly during long operations.
“In gynecologic cancer surgery, the robot has made a big impact because we’ve converted a lot of our open cases into [minimally invasive] cases,” says Chad Michener, a gynecologic oncologist at the Cleveland Clinic in Cleveland.
Robotic Risks
Even surgeons who aren’t extensively trained in conventional laparoscopic techniques can learn to use robotic systems because of their easier-to-use instruments and shorter learning curve. Myriam Curet, a surgeon and chief medical adviser at Intuitive Surgical, manufacturer of the widely used da Vinci system, says the technology is not intended to substitute for proven laparoscopic procedures, but to extend the benefits of minimally invasive surgery.
Still, no surgery is without risks. While studies show that robot-assisted procedures are generally safe, Makary says, complications can occur. For example, procedures could take longer to perform, meaning patients would spend more time under anesthesia. Also, the robotic controls make it more difficult for a surgeon to feel other tissues and organs in the body. This makes it easier to nick an artery or other crucial area. The Food and Drug Administration issued a warning to Intuitive Surgical for failing to report such adverse events, and the company was sued over injuries allegedly caused by its robotic system. Curet says that, overall, complication rates from robot-assisted procedures are comparable with those seen in open surgery, based on current data.
Physicians say it’s essential to determine which cases might better benefit from the robot-assisted approach. “Who are those patients? What are the characteristics of the surgery or the cancer?” asks Jason Wright, an assistant professor of obstetrics and gynecology at NewYork-Presbyterian Hospital/Columbia University Medical Center in New York. It’s hard to recruit patients for randomized trials that might answer those questions because so many patients want robot-assisted surgery, regardless of whether it’s appropriate for their situation. “Some people do come in requesting it,” says Kirsten Greene, associate professor of urology at the University of California, San Francisco.
Training Time
As medical facilities compete for every healthcare dollar by marketing their technology, patients not only expect but also demand access to the latest devices, regardless of evidencebased outcomes. Wright was an author of a 2012 study examining the marketing of robot-assisted gynecologic surgery on 432 hospital websites. While most sites reported improved short-term outcomes with a robotic system, very few cited limitations of the devices, such as complications, operative time or cost. And a study co-authored by Makary and published in the Journal of Healthcare Quality in 2011 reported that of the 41 percent of 400 hospital websites mentioning robotic surgery, 89 percent made statements of clinical superiority, and 32 percent specifically cited improved cancer outcomes. None mentioned any specific robotic-surgery risks.
Like acquiring any expertise, surgeons have a prolonged learning curve as they get up to speed using a robotic system. Intuitive Surgical provides training, including practice procedures through simulators and models, but training needs vary according to the surgeon’s baseline skills and other factors, Curet says. Requirements for how many supervised cases surgeons perform before operating independently and how many cases they must regularly perform to maintain their skills are determined by hospitals, so there’s no universal standard. In the department of obstetrics and gynecology at the Cleveland Clinic, for example, surgeons must perform 20 to 25 supervised surgeries before they can perform the procedures on their own, and must perform 20 robot-assisted procedures per year to maintain their privileges, Michener says.
It’s important when people who are confronted with this to look at the surgeon’s experience and outcomes and feel like they’re cared for.
—David Martin
Jim Hu, director of urologic robotic and minimally invasive surgery at the University of California, Los Angeles, who performs both open and robot-assisted procedures, says patients should focus their search on the surgeon, not the technique. “A robot in the hands of someone who isn’t very good isn’t going to help cure cancer more than someone who is good performing an open surgery,” he says.
“It’s just another tool that a surgeon uses,” Greene says. And it’s not appropriate for everyone. Certain problems, such as severe lung or heart disease, or extensive scarring from previous surgeries, actually make laparoscopic and robotic procedures more dangerous, she adds.
Martin opted to have Hu use a robotic system to operate on him in January. He says his physical recovery was swift and his function rapidly returned. He urges other patients to do their homework before deciding on a treatment. “It’s important when people are confronted with this to look at the surgeon’s experience and outcomes and feel like they’re cared for,” he says.

5 High-Tech Fixes for Patients

Health advances more easily reveal causes of illness, cost of care faster

Dec. 23, 2013 7:24 p.m. ET
Informed Patient columnist Laura Landro joins Lunch Break with five innovations in medical care that are percolating and are ones to watch in 2014. Photo: The Christ Hospital Health Network, Cincinnati.
From virtual doctor visits to online diagnoses, information technology is rapidly changing the way patients interact with the health system. Here are some innovations that are catching on more broadly and could improve care in 2014:
Monitor Long-Distance
An electronic intensive-care unit, or eICU, lets critical-care doctors and nurses check on patients in several hospitals from a remote command center with a bank of monitors displaying patients' vital signs. They can alert bedside staff if they see a subtle change in a patient that could signal a worsening condition. Remote monitoring by specialists is also catching on for emergency rooms and surgical units to help evaluate patients with stroke, seizures and other conditions.
Patients in a hospital with an eICU program were 26% more likely to survive their stay and were discharged 20% faster than those receiving usual ICU care, according to a study published earlier in December in the journal CHEST. The study analyzed some 120,000 patients in 56 ICUs over five years.
Video cameras can be activated if the remote team needs to visually check the patient, and can be used to check regularly on patients who might be at risk for falls, according to Brian Rosenfeld, an inventor of the eICU technology and chief medical officer for telehealth at Philips Healthcare, a unit of Dutch technology giant Royal Philips that purchased his company in 2008. As more evidence of its benefits has emerged, resistance among some critical-care doctors to having a remote doctor looking over their shoulder has dissipated, he says, but some "still think they are delivering perfect care and no one can help them."
The eICU helps especially in rural areas where there can be a shortage of specialists. Phoenix-based hospital-and-health system Banner Health currently monitors and supports more than 450 ICU beds across several Western states from command centers in Mesa, Ariz., and Greeley, Colo., and even uses some doctors in a Tel Aviv, Israel, center to cover shifts.
Crowdsource an Ailment
Patients can crowdsource their symptoms to find a diagnosis. As strange as it sounds, health experts say this may hold promise. On a new website, CrowdMed.com, patients who haven't been able to get a firm diagnosis can post their symptoms online to crowdsource an answer.
Founded by technology entrepreneur Jared Heyman after his sister Carly went three years with an undiagnosed illness, CrowdMed lets users offer a cash reward that goes directly to the "medical detectives"—be they laypeople or physicians—who help solve their case. Medical detectives may suggest a diagnosis and bet points on others' suggestions. Each diagnosis is treated as a stock with a share price that moves based on "demand" for the diagnosis. CrowdMed uses an algorithm to calculate the probability of each diagnosis being correct according to betting behavior, ranks the diagnoses from most to least likely, and presents the patient with the top 3 to 6. The average reward on the site is currently $200, the company says. Detectives split the rewards based on how many points they bet on the correct diagnosis.
Mr. Heyman says the idea isn't to replace doctors, but to come up with a list of possibilities a doctor might not have considered. Before the site launched, doctors diagnosed his sister with a disorder that includes early menopause symptoms. CrowdMed used her case to test the system later and within three weeks it was diagnosed correctly.
Luke Hoelscher, 31, recently posted his case on CrowdMed.com, after what he describes as several frustrating years of going from doctor to doctor with undiagnosed symptoms that included blurry vision, severe light sensitivity, bodily pain, and fatigue. He is offering a $500 reward. A former software engineer who can no longer work due to his health issues, Mr. Hoelscher says he has yet to find an answer through the site, but is optimistic. "There have to be people out there who have dealt with what I am dealing with," he says.
CrowdMed, along with increasingly sophisticated online "symptom checker" programs for consumers, allow patients to use some of the same strategies that doctors are already turning to for help with difficult cases. Some doctors participate in private, online social networks to seek input from other physicians and use Web-based programs that analyze reams of data to suggest possible diagnoses.
Consult Via Video
Hospitals, insurers and health systems are increasingly allowing patients to make an appointment online or consult a physician via video chat. Insurer CignaCI +0.21% for example, recently teamed up with Sunrise, Fla.-based MDLive to allow some health-plan members to schedule a virtual consultation with a doctor for nonemergency situations such as allergies and sinus infections.
In a pilot program, Mercy Health in Cincinnati has offered patients at two of its medical practices electronic visits. Patients complete an online survey specific to certain conditions, such as sore throat or headache and a doctor responds within 24 hours determining next steps such as calling in a prescription, or recommending rest. Physicians can attend to the electronic visits in between seeing other patients in the office. A spokeswoman says Mercy requests a $35 copay for these visits and about 10% of health plans cover the visits. Patient surveys indicated that even if the payer didn't cover the visit, she adds, patients would be willing to pay out of pocket for the service because of its convenience – such as no need to miss work, or arrange for childcare.
Sharecare, an online health-and-wellness site whose founders include celebrity doctor Mehmet Oz, recently launched AskMD, an app that collects information about symptoms, locates doctors, filters results by insurance, specialty and distance and directs users to the nearest emergency room if it looks like they need one. Hospital Corp. of America, a major hospital chain, is a sponsor of the launch, and some of its affiliated doctors and hospitals will be featured.
Text a Nurse
When Valerie Weichart, 56, was hospitalized recently for back surgery at St. Rita's Medical Center in Lima, Ohio, she was provided with a tablet device. It allowed her to view her medical chart and lab-test results, read up on her medications, see bios and photos of the staff caring for her, and text a nurse for help. St. Rita's parent, Catholic Health Partners, aims to roll out the system to its 23 hospitals after having completed a successful pilot. The system, called MyChartBedside, is linked to patients' electronic medical records. Patients can also use the device to surf the Web and play games.
"I felt more comfortable knowing what my medications were, so I didn't have to ask so many questions," Ms. Weichart says.
NewYork-Presbyterian Hospital also has been testing arming patients with tablets. "We worried at first about how nurses would adjust to it, but they really like it," says hospital chief executive Steven Corwin. The units are quieter without the ring of call buttons. The messaging system makes it easier for nurses to prioritize patient needs and requests. And patients are more fully engaged in their own care, Dr. Corwin says.
Calculate the Cost of Care
With the coming changes in insurance coverage, calculating copayments and other out-of-pocket costs could be daunting. Insurers and health plans are offering cost estimates online and through mobile apps that calculate how much patients will have to pay out of pocket, how much a plan will pay, and available in-network reduced rates. UnitedHealthcare's myHealthcare Cost Estimator, launched last year, recently added inpatient hospital information including knee replacement, childbirth, and spinal surgery. The costs can vary widely. For example, the company says, childbirth, including prenatal and postnatal care can range from $9,699 to $29,076 in the New York City area. In a survey of its users, 67% said the calculator gave them the confidence to make better cost choices.
Write to Laura Landro at laura.landro@wsj.com

Monday, December 23, 2013

Life, Interrupted: By a Dog

Suleika Jaouad at home with her dog, Oscar.Ashley WooSuleika Jaouad at home with her dog, Oscar.
  • FACEBOOK
  • TWITTER
  • GOOGLE+
  • SAVE
  • EMAIL
  • SHARE
  • PRINT
Life, Interrupted
LIFE, INTERRUPTED
Suleika Jaouad writes about her experiences as a young adult with cancer.
Ever since a therapy dog visited me in the hospital during my first cycle of chemotherapy in May 2011, I became fixated on the idea of having a dog of my own one day.
When you are talking to a dog about cancer, there are no judgments or taboos. The therapy dog, a small energetic King Charles Spaniel, jumped around on my hospital bed playfully tugging at the blanket on my lap. For the first time since I had fallen ill, I didn’t feel like I was being treated as if I were made of porcelain. The therapy dog made me feel like a human first, and a cancer patient second.
During the first year of my cancer treatment, adopting a dog was out of the question. I spent more time in the hospital than out. And in the time I was able to spend at home, I had to live in a germ-free bubble to protect my fragile immune system. As a substitute for a real dog, my mom found “Sleepy,” my childhood stuffed dog in the attic. As embarrassing as it was for me to be toting a stuffed animal at age 22, Sleepy was the next best thing to a real puppy. He made me feel like a kid again, safe and innocent to the cruelties of the world.
Six months after my bone marrow transplant, I finally got the green light from my doctors to get a real puppy. I promised my parents that I would take numerous precautions to protect my health. The dog would wear disposable booties on walks, to keep his paws as germ-free as possible. I promised to wear gloves when walking and feeding him, vowed that he would never sleep in my bed and lined up four friends to help take care of him when I lacked the energy.
I spent months trolling animal adoption websites for the perfect furry companion but as soon as I saw Oscar, I knew I had to bring all four, wiggling pounds of him home with me. With his soft white fur, tiny heart-shaped nose, and hazel eyes, it was love at first sight.
But within 72 hours of living with Oscar, I began to wonder if I had made a huge mistake. I had meticulously geared up for his arrival (teething toys, a crate, and an armload of cleaning products and stain removers: check, check, and check). But nothing could have prepared me for the task of sprinting outside of my apartment building at the crack of dawn with a peeing 8-week-old schnauzer-poodle mix. After a bone-marrow transplant and two and a half years of ongoing chemotherapy, my muscles were weak and my energy nonexistent.
Walking Oscar quickly became the most dreaded part of my day. After a few blocks, he was warmed up and ready for a run in the park. I, on the other hand, couldn’t wait to crawl back into bed.
When my boyfriend Seamus is home from work, he shares the responsibilities of taking care of Oscar. But during the day, it’s just me and the dog.
Oscar, unlike my caregivers, doesn’t care that I’m tired, feeling nauseous after my chemotherapy treatments. Every morning between 6 and 7, Oscar scoots over to my side of the bed and begins the process of baptizing me with his tongue until I wake up.
Caring for Oscar is not always easy, but trying to keep up with him has been some of the best medicine I’ve received since my cancer diagnosis. Oscar and I have even shared similar experiences, and together, we’ve slowly matured and grown more disciplined. He no longer pees on the Oriental rug in my living room, and I have stopped sleeping in until noon. Oscar just finished getting his booster shots, and I will soon be getting all of my childhood vaccinations for the second time (a patient’s immunizations are lost during a bone marrow transplant).
Walking up and down stairs used to be a challenge for us. I felt weak and unstable on my feet after spending so much time on bed rest. And Oscar’s short, stubby legs meant that more often than not, he would end up tumbling rather than walking down the stairs. Now, we bound up and down the stairs with ease, taking them two by two.
I’ve found that I do some of my best thinking during our early morning walks — those few hours after the garbage trucks have gone and before the coffee shops open when Manhattan is as asleep as it ever will be. For that one hour each morning, I’m focused on the now.
Because of Oscar, I have discovered the Tompkins Square Park dog run where we‘ve made lots of new friends. There’s Mochi, the terrier mix who likes to wrestle in the sand with Oscar. And Thelma and Louise, the shy brother and sister beagle duo who prefer to watch the other dogs play from a distance. I get my morning comic relief from watching Max, a giant hound, whose favorite extracurricular activity is attacking the fur trim on women’s winter coats.
As for the dog precautions that I promised my parents, we have tried to stick to most of them. I wash my hands regularly, and as my immune system has grown stronger, we’ve graduated to wiping down Oscar’s paws each time he enters the apartment. It won’t surprise any dog owner that Oscar has wriggled his way into the bed, but at least he sleeps at the foot of it.
Although I was the one who rescued Oscar from an animal shelter, it has become clear that he’s done most of the rescuing in our relationship. We’re still working on “heel” and other basic commands. When we leave my apartment, Oscar bounds ahead of me, tugging at his leash as he guides me toward the dog park. For the first time in a very long time, it’s not the cancer that leads. It’s Oscar.

Suleika Jaouad (pronounced su-LAKE-uh ja-WAD) is a 25-year-old writer who lives in New York City. Her column, “Life, Interrupted,” chronicling her experiences as a young woman with cancer, appears regularly on Well. Follow her updates on Twitter or Facebook.

Saturday, December 21, 2013

The Whole Chronic Thing

When I was first diagnosed with metastatic breast cancer, I wanted a second opinion.  It wasn’t that I thought another physician would tell me that I was fine, I just wanted to hear another take on the whole thing.
So it was that I met George Raptis.  He was wonderful.  He bolstered the findings of my first medical oncologist and praised her to some extent, for given my presentation of symptoms and history he would not have chosen to perform the PET/CT scan that revealed my metastatic disease.  And that is when I first remember hearing the description of stage iv cancer as a chronic disease.  He told me the mean survival rates (2.5 to 3 years) and then went on to say that many women live with metastatic disease well in excess of five years.  And, to that end, my cancer would be treated like a chronic disease.
When Dr. Raptis left for greener pastures and I met my new oncologist, she also used the description ofchronic disease quite a lot.  So, too, did the dozens of women who attended the Living Beyond Breast Cancer conference for women with metastatic disease.  The words just floated in my mind and never really settled anywhere.  It was just a phrase.  Just a beige description that made no impact.  Until just a few weeks ago.
My favorite knitting nurse (you know who you are!) was preparing my monthly shot of Xgeva and my quarterly Lupron shot (the arrows in her quiver are painless).  I have no memory of the specifics of our conversation, but I recall that as I bared my left cheek for the Lupron jab she said “after all, you have a chronic disease.”  And the phrase finally settled.
It didn’t just settle.   It grew barbs and dug in.
Chronic disease.
I mulled it over and over, the phrase tumbled in the cement mixer.  The whole walk to the bus and the ride home was dominated by the thought.  I don’t have a yeast infection, I thought.  I have cancer!  I didn’t like the phrase and started to take umbrage that people say it so casually.  I had said it that way, after all.  It’s how I described it to my family: no, I will never be free of cancer; I have a chronic disease.  The thing is, telling my family that I have a chronic disease made me socially acceptable.  It didn’t sound so bad after all.
Further, chronic disease makes this all so unbelievably doable on an emotional level.  “I have a chronic disease.”  It sounds so much better than “I walk around with a palpable cancerous tumor in my right breast.”  I quite literally feel an honest-to-goodness difference when I verbally say “I have cancer” as opposed to “I have a chronic disease.”  Indeed, I need to consciously force myself to say them identically, otherwise the final syllable in disease takes a little upturn in tone.
I know that if you take the time to look up the meaning of chronic it becomes clear that how ever I may feel about the word, its use is completely valid.
chronicFurther, consider the company we keep under the rubric chronic disease: Parkinson’s, ulcerative colitis, diabetes, epilepsy, and HIV–to mention but a handful of individual Hells.  It’s just that in my mind, the phrase chronic disease describes the endless character of any disease in a way that makes it more socially and emotionally acceptable than these diseases are on their faces.  It’s complicated because folks with chronic disease are often seen as the cause of their own circumstance and are often under diagnosed and under treated.   In a very real sense I want to own the word cancer.  (See Laurie Edwards’ book In the Kingdom of the Sick for a lengthy and informative discussion of chronic illness in an age where we are accustomed to being cured of disease.  I reviewed the book in an earlier post.)
I do my routine: Letrozole in the evening, Lupron quarterly, and  Xgeva monthly.  PET/CTs quarterly–though this will soon move to bone scans and non-PET CTs.  I drag my sorry ass to the medical oncologist every month.  I’m sure as hell not doing this because of my chronic asthma.  No, this is different. I have to make sure this thing stays in check and doesn’t start spreading to more bone or other organs.  And, for me, that needs to be called cancer at all times.  I am managing my disease, i.e., cancer.
I made it one year with MBC, but I see so many women with stage iv disease in worse shape than me.  It brings on a guilt that seems ludicrous, but exists notwithstanding all the reasons why it shouldn’t. I mean, if you have completely run out of options it’s not chronic anymore, is it?  It’s the end.  It rips my heart out.  We just lost Cindy Rose Phillips and Donna Peach, and Lisa Lynch among others.  And so many more of our friends are fighting for their very lives right now.
No, suddenly I don’t like the words at all.  Chronic disease somehow masks what is really going on.  For good or ill, I have breast cancer.  Stage IV breast cancer.  And, you know, that’s okay.  I just want to call it what it is in its starkest terms.  I want to take ownership of that word: cancer.  Chronic disease is just too good for it, considering the real hell that it is for so many men and women.  Considering the real hell that it has been for me.

About Scorchy

Change Agent. Feminist. Cat Mom. Knitter. Stage iv breast cancer. What a pain in the ass.
This entry was posted in My Stage IV LifeSocial CommentaryStage IV Musings and tagged ,. Bookmark the permalink.

23 Responses to The Whole Chronic Thing

  1. bethgainer says:
    Scorchy, bravo for writing this insightful post. You are 100 percent right about the language of mets. I agree with the above-mentioned comments. Calling metastatic breast cancer — or any metastatic cancer for that matter — a chronic disease minimizes the importance of the actual disease. It is NOT a chronic disease. Thank you for your candor and for writing this post.
  2. tw says:
    I never regarded losing my Mother or Aunt as losses to a chronic disease. They died of cancer, that’s all there was to it. People get chronic acne, chronic ear infections and chronic headaches but rarely die of those. I agree with you Scorchy, labelling cancer underplays its true nature. It just offers up a socially acceptable term so people avoid the conversation so many are unwilling to face. The truth is cancer kills and until there’s a cure we must never let social niceties stifle the facts.
  3. Catherine says:
    Oh yeah, I am with you. From the moment that term was applied to me it didn’t sit right. I reckon that is because chronic suggests difficult but liveable… The stats and stories around Mets do not sound chronic, they sound tragic. Somehow I feel like the word chronic is just another way of making this okay for other people.
  4. dear Scorchy,
    when Hugh was first diagnosed with multiple myeloma, I remember the first time his MM specialist referred to it as now being a chronic disease. I recall feeling somewhat comforted by that remark – my husband wasn’t going to fall into the stats that predicted such dire survival rates – he would live many more years, have his tandem stem cell transplants, recover, then take medications to address any recurrence – referred to in the big pharma, as well as medical research journals, as “novel agents”. something rankled me about the constant approval and upbeat reporting that always came back to chronic disease. and we just kept losing so many of our MM friends, many who had been treated with the newest, latest and still succumbed to that wretched scourge.
    it was not unitl I was dx’d with ST IV metastatic BC, then heard the same touting of the “progress” of it being a chronic disease, that I realized that there was so little being done to promote the concept of “cure” or “prevention” or promising research for both our illnesses – but there was still the same old, tired, hit or miss regimens of treatment for recurrences. which led me back to what that niggling thought about big pharma’s relentless pumping out of novel agents. the horrifying question that had simmered and stewed since hugh’s diagnosis was:
    if a disease gets relegated to being “chronic”, does that mean that the emphasis on research for prevention, cures, whys, and hows of diseases develop, manifest, and progress is less urgent?
    that thought, that question scared the shit out of me – we both had ST IV “chronic diseases!”. and I knew then that it was some sort of protective mechanism that would not allow my brain to fully form that question way back in the beginning when Hugh was diagnosed, 2 years before my own diagnosis – I wanted the promise of the experts who assured Hugh and I that there would always be a new drug right around the corner to provide an effective intervention for recurrence. I simply wanted my beloved husband to LIVE. ironically, hugh died 7 months ago, almost exactly within those dire survival predictions – while in a supposed full, robust remission. (stem cell transplants have a nasty tendency to making patients prone to a secondary cancer – it’s believed that Hugh had a very small brain tumor – in a very lethal location- before it ever manifested with signs and symptoms.)
    there is something in me that will forever completely reject the notion of ANY cancer being labeled a chronic disease. and it makes me physically ill to think of all the resources poured into developing more and more drugs to stave off the ravages of ST IV recurrences that could have, should be spent on research for the Real Deal. words matter. and they produce actionable results. it leaves a bitter and most frightening question as to what is to be gained, and what might be lost in re-labeling a disease known to kill, now CHRONIC.
    I am with you, Scorchy – I do not want to be in the box of “chronic” – I might not live long enough to see any real progress towards annihilating my cancer(s), but i’ll be damned if I jump on the chronic bandwagon and settle for it being any less than what it is – CANCER. and I, too, wonder if back in the beginning of treatment for BC, we called mastectomies by their rightful name, “breast amputations” instead of settling for a more palatable word, how much further advanced we would be in the game of determination to wipe out the need for them. (your past post on this issue was incredibly enlightening.) thank you for writing about this issue, for your honesty and for hopefully challenging the medical community in this seemingly skewed approach to soften the blow of ST IV disease.
    much love and light to you, my friend,
    Karen XOXO
    • Scorchy says:
      Lately, just over the last two or three days, I have begun to feel as if I won’t get past the five year mark. Not sure why I feel this way, but I do. And it is this feeling, I think, that led me to the dislike of this strange land known as :Chronic Disease.”
      It plays tricks on us. I hadn’t thought much about the words covering for the surreptitious activity of keeping a disease “chronic” so companies could make more money. Some would say that’s cynical–I would say that it is truthful. There are a lot of fat cats out there who think like this (apologies to my felines),
      I feel so sad when I think of Hugh. You were his rock, I’m sure. Where is your rock now? Oh everything about this disease gets to me. Everything.
      I’m glad we have one another.
      xoxo
  5. Barbara says:
    Yep.
  6. Elizabeth J. says:
    I totally agree. My oncologist calls it a chronic disease. He even compared it to diabetes. Yet, I have friends who have had diabetes for many years. They do not expect to actually die of diabetes itself. Perhaps from secondary health problems that develop over many years of being diabetic. They expect to see grandchildren grow up. They feel BETTER when they take their meds!
    In contrast, I will most likely die of metastatic BC. I know my lifespan will be considerably shortened. I will be fortunate if I see my infant grandson start kindergarten. And the side effects of my meds give me hot flashes, a great deal of aching, insomnia, fatigue, etc.
    Maybe the problem is they keep us alive too long to keep calling it terminal, but don’t really have a better term than chronic. But to most of us nonmedical people, we think chronic is asthma, arthritis, diabetes, epilepsy, not something that will probably kill us less than 10 years from now.
    By the way, I agree with the term breast amputation. When people today think mastectomy, they often think of skin-sparing surgeries where the woman wakes up “reconstructed.” I even heard a “breast surgeon” interviewed (quotes because I really wondered) who talked about the skin-sparing and how most women can chose immediate reconstruction (really – tell that to all of us who were told we had to wait until after radiation) and this was the kicker, “nobody gets radical mastectomies anymore.” (I replayed the interview twice as I did not believe I heard it right.) Technically, she was right, it is now modified radical mastectomies. But, she never once mentioned them. Never once mentioned lymph node removal. Only skin-sparing with reconstruction. Not even a mention that even in those cases reconstruction is a long multistep process. Many of my friends were actually shocked that I would not wake up after surgery with a reconstructed breast in place! So maybe it is time to make people realize what mastectomy really is.
    • Scorchy says:
      Like diabetes. Isn’t that rich? I hear what you’re saying. Diabetes is its own Hell, to be sure. But it’s not breast cancer, man. Though, I have a friend with diabetes and she is having such a hard time now that she’s older. Still, it’s not a game of one over the other, it’s still not cancer.
      As for amputations, I wrote post about language (amputation vs mastectomy). The film that accompanies it leaves no question about what it really is–whether it was 1930 or 2013. http://wp.me/s2CLwB-language
      Back in the day I used to think that women woke up with new boobs in place. All was well! Cancer out, good boob in. Cured! Boy, do I know different today.
  7. Scorchy, You ROCK as always…chronic disease is so much better all around ~ although NO DISEASE would be the Best Scenario. My HEARTfelt hugs to you xo
  8. Hi Scorchy,
    Words matter so much don’t they? There is this tendency in Cancer Land to constantly attempt to lighten things up or gloss over stuff. While I get that, it’s way too often a dis-service to the cancer patients themselves. Sometimes I think there is more concern for the non-cancer people. Hard to explain… I agree with Kathi about the mastectomy vs. amputation word choice. Yet another attempt to lighten up an almost still barbaric procedure… I’ve never really liked the term chronic disease either in regard to mets. Your post is perfectly written. You nailed it. Thank you.
  9. Pat Wetzel says:
    Why do people disengage when you say “CANCER”? They look away; want to change the subject; mutter the usual nonsense “You look so good!”. What is so difficult about a bit of compassion or care? But neither are part of our societal make up anymore. We care about superficial things. Using the right word. Wearing the right whatever. Featureless, wrinkle-less facades. “Chronic Disease”–no worries here! (/sarc)
    By the way Scorchy, I love the snowflakes! Great post!
    • Scorchy says:
      Yeah. I guess before I got the cancer I used to look away too. I felt weird and embarrassed that I mentioned it. And now I’m on the other side and know first-hand that you won’t break, get the vapors, or otherwise die if someone says “cancer.” It’s up to us to break down the wall. Snowflakes and all (a nice little WordPress thing they do every year until Jan 4.). xoxo
  10. Tomi Morris says:
    Years and years ago, my aunt suffered from chronic leukemia ( the 70′s, early-mid 80′s). The words made it sound like it wasn’t really leukemia. It wasn’t that thing you died from. It was just there. Well, she did die of leukemia eventually (honestly, I don’t remember how long her leukemia journey was) and in our heads, she died “because it turned to real leukemia.” This blog is so spot on for me. Reading through it, all I could think of was my aunt. The lightbulb just switched on. Thank you.
  11. The Accidental Amazon says:
    Scorchy, I couldn’t agree more. I don’t know if some kind of compromise phrase would help — like chronic cancer, as opposed to the generic ‘disease.’ As horrible as many of the chronic progressive diseases I see with my patients, stuff that does not get better, stuff that will eventually lead to death, things like Parkinson’s and COPD, these diseases don’t include the same potential time bomb of mets. Lumping metastatic cancer in with other ‘diseases’ just doesn’t quite cut it. Who is served by the chronic disease phrase? Does it make the clinicians feel better? I don’t know. It doesn’t make me feel any better, either as a patient or a clinician. There are so many inept and inapt medical phrases out there, though. For instance, I’ve always thought ‘mastectomies’ should be called breast amputations. And then there’s the phrase ‘cancer survivor.’ Don’t love these either.
    Thanks for writing about this. xo, Kathi
  12. Knot Telling says:
    Very interesting thoughts; I hope this is widely read by people with cancer and especially by the people around us. Our experience is so difficult to express; you do a wonderful job, Scorch. Hugs.