Angelina Jolie sparked a lot of buzz last week when she announced that she had undergone a double-mastectomy—at age 37—as a preemptive measure against breast cancer. Many have hailed the actress’s frankness as courageous and enlightening.
First, let’s note that Jolie’s circumstances are rare. The catalyst for Jolie’s decision was a genetic mutation that meant an 87 percent lifetime risk of breast cancer, along with a 50 percent lifetime risk of ovarian cancer (the disease that claimed her mother’s life at a young age). Without a doubt, these are astounding and frightening odds.
The vast majority of women diagnosed with breast cancer, however, don’t have a mutation of the BRCA1 (Jolie’s) or BRCA2 gene. Even women with a prominent family history of the disease—such as Jolie—might not carry the mutation, but fall into another category of hereditary cancer. What’s more, non-genetic factors can influence a breast cancer diagnosis—these include early menstruation or late menopause, lifestyle (smoking, overeating, excessive alcohol intake and lack of exercise), and exposure to environmental toxins.
Ten years ago, breast cancer was treated as a single disease, but today we are mining information from genes within tumors to guide treatment decisions. This strategy minimizes side effects and improves quality of life for patients.
In the video below, Sohnee Ahmed, a certified genetic counselor at URMC, discusses why it’s important to understand your family’s history of cancer, considerations for genetic testing if a pattern is present, and what options are available should a BRCA1 or BRCA 2 gene mutation be identified.
Interested in genetic counseling? To reach a certified genetic counselor at URMC, call (585) 275-3461.
Sohnee Ahmed is a certified genetic counselor in the departments of Medicine and Child Neurology. She provides counseling for families at the URMC’s Neurogenetics Consultation Service, Huntington Disease Center of Excellence, and Cancer Genetics Service. Ahmed is involved in research endeavors including the implementation of universal Lynch Syndrome screening among colorectal cancer patients. A frequent speaker on the importance of genetic counseling, she’s also a member of the National Society of Genetic Counselors and of the Canadian Association of Genetic Counsellors.
As the sun makes less of a cameo appearance and enjoys more of a starring role these days, and as we start shedding layers of clothes, our thoughts have taken a downward turn—to our feet! Are we really ready to bare these things? Shouldn’t we do something to spiffy them up? But wait—what was that we heard about spa pedicures and their association with infection?
To help you weigh wisely whether that hot pink pedicure is worth the risk, we got together with Ann Marie Pettis, director of Infection Prevention at Strong Memorial and Highland hospitals.
Scripts: We have our fingers (and toes!) crossed that warmer weather is afoot—which equals bare and sandaled feet. We’ve heard, however, that spa pedicures might be linked to some risks for infection. Can you elaborate?
Pettis: There’s potential for exposure to and subsequent infection from fungi and blood borne pathogens, such as hepatitis B and C, as well as HIV. This is because there’s a slight risk of a small amount of bleeding if pedicurists use instruments too aggressively and then don’t sanitize them adequately. Another common germ which is often found on the skin of healthy individuals is Staph aureus, which could make its way into the spa. Germs commonly found in water, such as Pseudomonas, might potentially be found at the spa as well.
Really, the pedicure instruments and the foot bath present the greatest risk. If you get a pedicure when you have a rash, cut, or even bug bites, you could make yourself more vulnerable to infection—and you also increase the chance of sharing an infection with the next customer. Another recommendation along these lines is to avoid waxing or shaving your legs for at least 24 hours before your treatment, since doing so can create tiny skin abrasions, opening you up to the possibility of infection.
Scripts: So are there ways to prevent infection at the spa? Can we still schedule our pedicures if we take certain precautions, or should tootsies never be handed over for treatment?
Pettis: I actually get a spa pedicure myself occasionally. My advice is to take a look around, and inquire about the spa’s sanitation practices before you kick off your shoes and socks. Feel free to ask the owner how they disinfect the instruments and foot bath between each customer. Make sure that they use an Environmental Protection Agency-approved disinfectant. Technically, the Department of Health is responsible for ensuring that spas meet sanitary standards, but with the large number of spas out there, this is a tall order—so, ultimately, you need to do your own “due diligence.” Since they’re at increased risk for infection as well as serious complications if an infection does occur, people with diabetes should be particularly cautious in evaluating the hygienic conditions of their go-to spa.
Some spas encourage customers to bring their own instruments, which they then store for your next visit. Not sharing instruments definitely decreases the risk of exposure to anyone else’s germs. And speaking of tools, your pedicurist should never trim any callous on your feet with a razor. Instead, they should carefully use a pumice stone (to avoid abrasions or bleeding).
Finally, try to be the first customer of the day. A spa is likely to be cleanest before all the “foot traffic” tromps through.
Scripts: Makes perfect sense. How can we tell, after returning home from the spa, if we might have picked something up?
Pettis: Keep an eye out for redness, tenderness, or rash in the area. If any of these show up post-pedicure, consider contacting your care provider.
Ann Marie Pettis directs Infection Prevention at both the University of Rochester Medical Center (Strong Memorial Hospital and Golisano Children’s Hospital) and affiliate Highland Hospital. An infection preventionist with more than 30 years’ experience, she’s published articles in peer-reviewed journals and trade publications, and lectures locally, nationally, and internationally. Leadership roles include serving as past president of Western New York Infection Control Organization and the Association for Professionals in Infection Control and Epidemiology (APIC) Finger Lakes Chapter. She recently completed her term as chair of the APIC Communications Committee.
A couple years back, she spoke to Scripts with some smart advice on whether or not handshakes should be taboo during cold and flu season. You can see that “Let’s (Not) Shake on It” video post here.Just a couple months ago, she talked with us again about finding a balance between cleanliness and germs (see here).
A few blistering, lobster-red sunburns as a kid. Fair skin, light eyes, sprinkled with a hearty helping of freckles. A family history of melanoma.
When it comes to protecting your skin from cancer, you can’t be too safe. Each year there are more new cases of skin cancer than breast, prostate, lung and colon cancers combined, according to the American Center Society, with an estimated 76,690 new annual cases of invasive melanoma—a skin cancer related to UV exposure—diagnosed in the U.S. alone.
Luckily, skin cancer is almost always curable if caught early. But how can you discern between a normal, healthy mole and one that’s cause for concern? In the clip below (we’re re-sharing a favorite one from a couple years back, so please ignore the incorrect screening date at the end), you can hear URMC dermatologist Dr. Marc Brown discuss skin cancer, the importance of practicing “safe sun,” and some tips to help you identify suspicious moles (while wearing your birthday suit!) at home.
Free Skin Screenings May 11
What’s more, if you’re in Rochester, you can be proactive about your skin health this weekend by stopping by Strong Memorial Hospital’s Free Skin Cancer Screening Clinic between 8 a.m. and noon this Saturday, May 11. No registration is required; take the Silver Elevators to the 2nd floor to find the Dermatology Suite. Each screening takes about five to ten minutes and offers a written report of findings. Information on skin cancer, including prevention tips, will be available.
“Sun damage is cumulative, so it includes exposures that can seem just a part of our daily lives such as walking the dog, mowing the lawn or a trip to the store,” Dr. Brown said. “Making a skin cancer screening part of your annual routine will not only make sure that you are identifying a current issue, but it’s a terrific way to uncover potential risk factors for the future.”
For more information about the free detection clinic, contact the Dermatology Department at (585) 275-3871.
Dr. Brown also recommends the following ways to protect your skin:
Slather on sunscreen. The sun can damage your skin in as little as 15 minutes. Apply sunscreen, with SPF 30 or greater and both UVA and UVB protection, 15 to 20 minutes before you head outdoors. Don’t forget areas such as the back of your neck, top of your ears arms and legs, and scalp if you’ve lost some hair. Reapply every two hours—or sooner after swimming or actively sweating.
Wear a hat and loose-fitting clothing. A hat with a four-inch brim will shade more than 95 percent of the face, head, ears and neck. Wear light-weight clothes that cover your arms and legs.
Avoid the most intense sunlight. Schedule outside activities for the early morning or late afternoon to keep out of the most intense sunlight between 10 a.m. and 3 p.m.
Don’t tan indoors. Heading on vacation? Getting prepped for swimsuit season? Let’s bust a relentless myth: Getting a base tan from a tanning bed or booth will NOT give protection from sun damage. In fact, it’s been linked to skin cancers.
This annual skin screening event is sponsored by the American Academy of Dermatology, Rochester Dermatologic Society, and URMC’s Department of Dermatology.
Dr. Brown specializes in the diagnosis, treatment and prevention of skin cancers. In addition to performing Mohs surgery on more than 1,200 patients a year, he also runs a multidisciplinary melanoma group practice.
This week, we’re sharing a video that tackles one of the most prevalent myths related to organ donation—that medical care efforts may be less than heroic if doctors and nurses know the patient has signed an organ donor card.
In this clip—created by URMC’s Finger Lakes Donor Recovery Network, in recognition of National Donate Life Month 2013— you’ll hear upstate New York health care providers’ thoughts and experiences with organ donation and transplantation, illustrating how that myth is far, far from the truth. What’s more, some families go on to say that being able to donate their loved one’s organs is the one silver lining to come out of a nightmarish personal storm.
Research Shows Organ Donation Might Help Families Grieve
There’s no way around it: Funerals are hard. But when your loved one has made a final gift that can save lives and bring healing to other families, something positive can come out of the pain.
“There’s a great deal of support for organ donation in the Rochester community,” said Rob Kochik, executive director of Finger Lakes Donor Recovery Network (FLDRN), a division of URMC.
“Even so, we often find that some of the same people who are quick to express support at the idea of donation have not actually taken the step to officially register themselves. It’s probably because they haven’t spent much time considering their own potential to leave a legacy of hope.”
We spoke to Kochik to learn more about organ donation—and the incredible power one person can have to change lives.
Scripts: Not to downplay the very real struggle that grieving families face—we know time is the true healer of deep wounds—but is there any research showing that organ donation can help surviving family members make sense of their loss?
Kochik: There’s definitely evidence behind the idea. At FLDRN, we offer support to organ donors’ family members for a minimum of two years following their loved one’s gift. A number of these donor family members go a step further and serve on our FLDRN’s Donor Family Advisory Committee, giving us insight were incredibly grateful for. Who best to learn from than previous donors’ family members?
In a recent survey, family members told us they were motivated by the prospect that “something positive could come out of [their] loss,” that “someone else would have a better life,” and that, in a way, “[their] family member would live on.” This idea of paying life forward, and having something beautiful come out of their tragedy, is certainly compelling. It can be something encouraging to cling to in those first difficult days, months, even years.
Scripts: That’s a great way to describe it. But why do you think some people “never get around to” thinking about organ donation?
Kochik: Naturally, none of us likes to think about our loved ones dying, much less to consider our own death.
Even so, it’s inevitable that each of us will die at some point—so it’s really important that we make this very personal decision and share our wishes with our family members. When we make the choice ourselves, and document it, we spare our family members from being burdened with one more emotional decision at a time when they’ll likely be overwhelmed. We know this firsthand; family members of loved ones who’ve taken the time to elect to be (or not be) donors repeatedly tell us they are very much relieved that they didn’t have to make this potentially exhausting decision.
Scripts: I bet many people don’t think of it from that angle, but it’s a fair point. On another note, though—can donor families and transplant recipients ever meet up?
Kochik: Great question. Transplant recipients often send thank you cards and letters to their donor’s family members; it’s one small way to express their appreciation for a very big gift – life. And in the other direction, donor family members often enjoy sharing some more information about their loved one with transplant recipients; it’s a way for them to see that their loved one’s story is being told, and they’re living on. Periodically, when both parties wish to meet in person, FLDRN helps coordinate that.
Scripts: What a special thing. Before we wrap up, tell us: Of all the myths that muddy the issue of organ donation, which one would you most like to see cleared up?
Kochik: Hands down, the most frequent reason people tell us they’ve not signed up to be a donor is because they’ve (wrongly) assumed that their age or medical condition would render them ineligible.
That couldn’t be further from the truth. The fact is, that there are absolutely no age restrictions to become an organ donor – and each donor’s medical condition is carefully evaluated at the time of donation. Everyone is encouraged to enroll in the registry, no matter their age or medical history.
To learn more about organ donation and transplantation, please visit the Finger Lakes Donor Recovery Network website, or the Facebook page for the bLifeNY awareness campaign, developed by the URMC Division of Solid Organ Transplantation and Hepatobiliary Surgery. Or call FLDRN at (585) 272-4930.
From when the alarm blasts us awake until we drift off to sleep at night, the days are chock-full of choices—not only snap judgments, but those that require deeper thought. With the hundreds of decisions we face daily, who needs to sort through yet another one?
You do if you haven’t begun to consider how you’d like your medical care to proceed, in the event that you become ill or injured and are unable to then make or express your wishes.
For expert advice that might just save your loved ones a lot of heartache, we consulted Dr. Richard A. Demme, URMC associate professor of Medicine and Humanities.
Scripts: There seem to be several things people refer to when they talk about end-of-life planning—advance directives, living wills, and health proxies, to name a few. Can you provide a big-picture view here?
Demme: It certainly can feel a little confusing, which might contribute to the off-putting nature of this important subject. My own need to know more about end-of-life planning was sparked in my first week as an attending nephrologist, when a patient asked me for a lethal injection. That was over 20 years ago—I’ve been picking this stuff apart since. But thinking about this serious, somewhat tricky topic is essential.
The things you mention all fall under the same end-of-life planning umbrella. Advance directives, generally speaking, are instructions specifying how a person wants her health care to proceed should she become incapacitated and unable to communicate her wishes. A living will is an older type of directive outlining treatment instructions. For example, in an advance directive, you can choose to withhold certain life-support therapies, or ask for a trial period of treatment.
A health care proxy is a person who is supposed to interpret your wishes about health care decisions. The form appointing this person is also called a health care proxy. Proxies are broadly empowered in New York State, which means there’s more flexibility when doctors communicate with them than when referring to a printed document, which can’t talk back and clarify.
Scripts: So is end-of-life planning really for everyone? Kids, the young, the healthy?
Demme: If you’re over 18, you can and should name a health care proxy. There have been historical court cases—long, ugly battles—about which medical treatments should be continued for people in persistent vegetative states. Do you think a court would make a better decision for you than your own chosen proxy? Of course not. Your proxy, someone you trust to make decisions on your behalf, could ask to continue or stop treatments.
There are no fees or lawyers in appointing a proxy. Remember to choose wisely—not someone who’s consistently unavailable, or someone who just can’t live without you. Surprisingly, about 30 percent of people might not choose their spouse/partner to make their health care decisions. You need to count on your proxy to be able to know when to continue aggressive treatment, but also when to say Enough, now let’s concentrate on patient comfort. The hardest part about picking is figuring out who will make decisions according to your wishes, even if they personally would rather make a different choice.
Scripts: Some of the legal documentation asks that end-of-life decisions be put into words. How can we keep language broad enough to prevent potential confusion? We’ve heard that you don’t want to have been so specific with your wishes that you inadvertently complicate situations you couldn’t have anticipated. Are there good online resources you can point us to?
Demme: Try to avoid such popular boilerplate language as “extraordinary measures,” and “natural death.” Don’t say, “Do everything.” Due to the absence of agreed-upon medical definitions for these terms, sometimes we doctors are left with question marks hanging over our heads. Instead of unhelpful buzzwords, find precise language to help you articulate your message. You can write things like “If I am no longer able to recognize my family, and am not likely to recover, I would want treatments stopped.” Or, “I would prefer to try to eat by mouth, even if there is a risk of aspiration pneumonia.” But, it’s difficult to forecast all of the medical situations you might encounter, so it is more useful for physicians to know who you want us talking to when you can no longer tell us your wishes.
One excellent resource is this easy-to-use website (developed by a team of URMC medical students!) that fleshes out these topics a bit more fully and allows you to generate online, using their forms, some of the documentation we’re talking about now.
Scripts: So in summary, what’s the single action you’d recommend that readers take today?
Demme: You could probably guess, but here goes: Please consider appointing a health proxy—and don’t forget to communicate your health care wishes to him. Do it now.
Dr. Richard A. Demme has been a board certified nephrologist for over 20 years. He is a Fellow in the American College of Physicians. He chairs the URMC Ethics Committee, and is the co-director of the Division of Medical Humanities and Bioethics. His interests include ethical issues in transplantation, end-of-life care, medical decision making and informed consent, and the history of medicine.
Dan Gnagy sought his PCP’s advice when he started having difficulty swallowing. The 52-year old had experienced chronic reflux since his 20s, and thought he just needed adjustment to his medication.
But when the doctor peered into Mr. Gnagy’s throat, what he saw alarmed him, and he immediately referred him to thoracic surgeon Dr. Jeffrey Peters. After tests and a biopsy, the doctor’s initial diagnosis was confirmed: stage IV esophageal cancer. This week, we’re sharing Mr. Gnagy’s video account of his story, which originally published with Canandaigua Daily Messenger.
A Deadly Cancer
Esophageal cancer strikes only three percent of cancer victims but boasts the second highest death rate of all cancers—making it one of the deadliest in the U.S. Largely preventable through early detection and behavior modification, esophageal cancer is a disease that slowly targets older individuals—men in particular—who may have experienced symptoms of reflux for years. As the giant cohort of Baby Boomers move into middle age, heartburn has now become a common condition, making esophageal cancer awareness all the more important.
What’s It Got to Do with Reflux?
Reflux is a condition where the muscle around the opening from the stomach to the esophagus becomes lax, allowing stomach acid to wash up into the esophagus ulcerating its delicate epithelial cells. Years of reflux can cause the esophagus to undergo enough changes to lead to precancerous conditions and even cancer.
Treatment is targeted at eliminating the corrosive effects of stomach acid by using antacids, proton pump inhibitors and lifestyle modification. URMC is one of just 13 U.S. surgery sites chosen to offer the LINX Reflux Management System, a ring of small, bead-sized magnets that mechanically prevents the backwash of acid into the esophagus. The force between the magnets strikes the just-right balance: Weak enough that it opens wide for swallowing, but strong enough that it tightens the faulty seal back up after food has passed down.
Because reflux affects one in 10 Americans and is a precursor to esophageal cancer, it’s important to treat it as aggressively and completely as possible in the beginning stages. Important interventions include eliminating risk factors like obesity, smoking and drinking.
Gnagy’s cancer is now being treated at the James P. Wilmot Cancer Center, and he has responded well. He makes the trek to Wilmot every two weeks for chemotherapy and has been told that his cancer is now inactive.
April has been designated Esophageal Cancer Awareness Month. To learn more about the disease and what you can do to prevent it visit the Esophageal Cancer Action Network.
An interview with Dan Gnagy also appeared in the Messenger-Post News, here.
For more information about the LINX* heartburn ring being implanted at URMC, click here.
* Of note, Peters has served as a consultant to the device’s parent company, TORAX Medical, and received nominal compensation for sharing his clinical expertise at meetings over the past three years. You can hear from a patient who has enjoyed success with the device here.
With the Asthma and Allergy Foundation of America’s (AAFA) recent release of its 2013 Spring Allergy Capital list, Rochester won 37th place on the list of “the 100 most challenging places to live with allergies” during the spring and fall seasons. The report takes into consideration pollen counts, the use of allergy medications (both over-the-counter and prescription), and number of board-certified allergists per patient.
With the warmer spring weather soon upon us—signaling plants to start budding and trees to pollinate—we can expect hay fever (or seasonal allergic rhinitis ) to be right on its heels. What’s an allergy sufferer to do? To learn more about managing runny noses, congestion, sneezing, itchy and watery eyes, we spoke to allergist Dr. Carolina Marcus.
Scripts: Is there any way to avoid exposure to pollen this spring?
Marcus: Indeed, there are several smart, simple things you can do.
First, when it’s hot out, use an air conditioner as opposed to cracking windows or propping open doors. You really want to keep them shut as much as possible, to limit the amount of pollen entering your home and car. You can also plan to avoid outdoor activities or exercise early in the day, instead engaging in these activities in the afternoon or evening, since tree pollen is heaviest in the morning and tends to dissipate as the day goes on. You might also consider taking a shower and wash your hair—even if it’s just with water— before bedtime. This helps rid your hair and scalp of accumulated pollen that could otherwise end up on your pillow, where you can inhale it. By that same token, wash your clothing frequently, and don’t go to bed in the same clothes you wore during the day.
Scripts: That’s all great, practical advice. But what about medications—can you highlight some options?
Marcus: Over-the-counter antihistamines can be very helpful. Loratadine, cetirizine and fexofenadine are long-acting antihistamines that can help alleviate itchy eyes and a runny nose. But for nasal congestion, the single most effective treatment is a nasal glucocorticoid spray, which you secure by prescription. You should ask your doctor if you think you might benefit from this kind of medication.
Scripts: And how can I pinpoint the exact cause/s of my troubles?
Marcus: You have to engage a specialist. Consultation with an allergist can help you identify specific triggers and manage your symptoms and/or asthma. In some cases, allergy shots might be the best therapeutic option. Talk to your primary care doctor if you think you might benefit from working with an allergy specialist. It’s really important that you communicate your symptoms and concerns to all of your caregivers, regularly, so that they can best care for you as a team.
Here’s to a happy and healthy allergy season!
Carolina Z. Marcus, M.D., is an assistant professor of Immunology at the University of Rochester Medical Center. Her clinical interests focus on the education of her patients and their families, as well as the community at large, on asthma, atopic dermatitis and allergies. Dr. Marcus has a particular interest in food allergy awareness and education.
Want an appointment? Dr. Marcus sees patients at URMC’s Allergy and Immunology Clinic, 400 Red Creek Drive, Rochester, NY 14623. Learn more by calling (585) 486-0147.
Our Scripts blog is updated weekly, and offers coverage of scientific breakthroughs, second opinions on the latest medical recommendations and research, and insight into popular wellness trends. If you have a topic or issue you'd like to see discussed on this blog, send a note to scripts@urmctoday.com.
The vast majority of women diagnosed with breast cancer, however, don’t have a mutation of the BRCA1 (Jolie’s) or BRCA2 gene. Even women with a prominent family history of the disease—such as Jolie—might not carry the mutation, but fall into another category of hereditary cancer. What’s more, non-genetic factors can influence a breast cancer diagnosis—these include early menstruation or late menopause, lifestyle (smoking, overeating, excessive alcohol intake and lack of exercise), and exposure to environmental toxins.
Sohnee Ahmed is a certified genetic counselor in the departments of Medicine and Child Neurology. She provides counseling for families at the URMC’s Neurogenetics Consultation Service, Huntington Disease Center of Excellence, and Cancer Genetics Service. Ahmed is involved in research endeavors including the implementation of universal Lynch Syndrome screening among colorectal cancer patients. A frequent speaker on the importance of genetic counseling, she’s also a member of the National Society of Genetic Counselors and of the Canadian Association of Genetic Counsellors.
