To provide a vehicle for patients and their families to communicate with friends and loved ones during a hospital stay or outpatient treatment, Fox Chase offers an online service called CarePages – a free, private and personalized web site. On CarePages, a patient or caregiver can post an update, share photos, and collect supportive messages from family and friends. In addition, there is an option to connect with bloggers who have been through a cancer experience, and to learn about healthcare issues through a monthly newsletter.
Patients who have created a CarePages site have said that it gives them peace of mind knowing that the people who care about them are being informed of their progress. For some, the act of writing itself can be therapeutic. And it’s a great feeling to read supportive messages from those who care about you and to know that you’re not alone.
In July of 2008, when I was 29 years old, I was busy working as a physician assistant for an oncology group in Scranton, PA. I normally ran three to five miles a day for exercise, and had run several races including a marathon in 2006, but noticed that I was becoming short of breath on the hills. I was also getting extremely tired after working all day at the office.
I was in shock. When you work with cancer patients every day you never think that it can happen to you.
Everything moved very quickly after that. I had an appointment with Dr. Robert Emmons of the Fox Chase/Temple Bone-Marrow Transplant Program a few days later. He told me that I needed to start chemotherapy immediately and would need a stem cell transplant. I had several months of high dose chemotherapy, and after my sister donated her stem cells, I had the transplant on December 26, 2008.
Recovery from the transplant was very slow and I felt as if I would never feel good again. I had problems with graft vs. host disease, which caused severe diarrhea, nausea, and lack of appetite. As a result, I lost 25 pounds. Throughout my recovery, my husband and family were so supportive and Dr. Emmons and his physician assistant Lisa were wonderful. They encouraged me the whole time and told me that I would get “back to normal,” even if it was a slow process.
During my procedures and healing, I relied on the Care Pages website to help me communicate with my friends and family. It’s such a wonderful service. While I was in the hospital, I put out an update every day of what was going on and how I was feeling. When I returned home, I was able to give everyone information on my health status. There is even a place on Care Pages to upload pictures, a feature that my family who live far from us really appreciated. My family and friends were able to send me encouraging messages on the website.
Care Pages kept me connected with people, and I will always appreciate it.
Eventually, I started to feel better, gained some weight back, and started exercising again. Today I am jogging again, hiking with my dog, and mountain biking. I feel great, like my old self. I’m going back to work in January. Life is good again!
Sharon Schwartz, CRNP, MSN, WHCNP, is a nurse practitioner in the gynecological oncology practice at the Women’s Cancer Center. In addition to her nursing experience in oncology, she has worked in obstetrics and fertility. Her varied background has helped her provide informed and compassionate counsel to patients at all stages of care. Because she is so good at talking to patients, I asked her to address the issue of abnormal Pap tests, and what women can do with the tools available today to prevent cervical cancer.
Did you know that cervical cancer is one of the cancers we can almost completely prevent?
We are fortunate that we have screening tests (pap smears) to detect pre-cancerous changes that usually occur before actual cancer (you may hear them called dysplasia, cervical intraepithelial neoplasia, CIN). This means we have opportunities to treat precancerous cervical growths before a woman develops invasive cervical cancer. We are especially fortunate that we know the primary cause of cervical cancers, the Human Papilloma Virus (HPV). We now have FDA approved vaccines to prevent the majority of HPV infections and dysplasia that can arise as a result of such infections.
However, in the United States it is estimated that 10,000-15,000 women develop cervical cancer each year. Worldwide, it is an even greater public health issue. More than 500,000 women around the world are diagnosed with invasive cervical cancer each year.
In this country, screening is widely available and inexpensive. As the HPV vaccine is more widely adopted, the incidence of invasive cervical cancer should decrease, both nationally and internationally.
What can women do to increase our chances of avoiding cervical cancer?
First, those who are eligible for the HPV vaccine should receive all three vaccinations. The vaccine is most effective before a woman is infected with the virus. However, even women who have been exposed to HPV benefit from receiving the vaccine. If we are beyond the recommended age to receive the HPV vaccine (right now it is recommended for girls and women ages 9 -26, but that may change), we should make sure that our daughters, granddaughters and other relatives who are eligible for vaccine get inoculated.
Second, keeping up with gynecologic examinations, including Pap smears, is vital. Make sure to schedule regular visits and discussions with your OB/GYN or other primary care provider who has expertise in performing pelvic examinations. Your provider should be able to keep you up to date on current recommendations for the timing of Pap smears. If you have an abnormal Pap result, your provider may recommend a colposcopy. This is very similar to a Pap smear but the cervix is viewed with magnification by a binocular instrument called a colposcope. Special lenses and solutions are used during the colposcopy to identify any abnormal areas on the cervix. Any abnormal area is biopsied (a tissue sample is taken for viewing under a microscope). If dysplasia is discovered, the practitioner will discuss treatment recommendations with you.
Finally, it should be noted that there are cancers that develop in the internal canal of the cervix and may be more difficult to diagnose than those which develop on the outside of the cervix. However, women who are up to date with gynecologic care are more likely to pick up problems than those who do not have OB/GYN care for many years. Some early symptoms of cervical cancer are bleeding between periods, bleeding after intercourse, or a new odorous vaginal discharge. Any of these symptoms should be discussed with your OB/GYN provider and investigated. The more you know about preventing cervical cancer and the more regular your checkups, the more likely you will be to identify any problems before cervical cancer develops. In this case, vaccination and consistent screening are the keys to prevention.
Sharon Schwartz, CRNP, MSN, WHCNP
Women who have had lymph nodes removed during surgery or radiation to the lymph area under the arm are at risk for lymphedema, a swelling in an extremity, caused by an accumulation of lymph, or intercellular fluid. According to the American Cancer Society, an average of one in five, or 15-20% of women who have had standard lymph node removal, will develop lymphedema. One study estimates the prevalence at 49% when including self-reported symptoms of lymphedema. Approximately 400,000 U.S. women have the condition. Because it affects a number of our patients, we asked Wilma Morgan OTR/L, CLT-LANA, the Lymphedema Specialist in Fox Chase’s Rehabilitation Department, to address some common questions surrounding lymphedema and how it can be prevented or controlled. If you are concerned about lymphedema, please don’t hesitate to contact your oncologist or Wilma. If you have specific questions for Wilma, please submit them in the comment section below, or call her at 215-728-7000.
Q. What are the signs and symptoms of lymphedema?
The onset of lymphedema is typically one to three years after treatment and can be very subtle and unpredictable. Lymphedema can also arise 20 years after surgery. For that reason, the criteria are not universally recognized and professionals may find it difficult to recognize the symptoms.
Also be aware that lymphedema can occur after gynecological cancer, such as vulva, ovarian and uterine. Swelling can occur in either one leg, both legs and genital areas.
Lymphedema usually presents with a feeling of tightness, heaviness or aching in the arm, and you may notice decreased flexibility in the limb or a buildup of fluid in the trunk, chest wall, or limb. There may also be changes in the skin, with tightness or pitting. In some people the swelling is painful, and in others it’s not. Some people experience pain in the shoulder or back as well. Others report a feeling of fullness, heaviness, or tingling in the arm, trunk or back.
Q. What are the risks and what precautions can a patient take?
Patients who have had lymph nodes removed are familiar with many of these precautions. First, blood pressure measurements, blood draws, IVs and other interventions no longer take place on the arm on the side where the lymph nodes were taken. This is part of the recommendation to avoid constriction or pressure on the arm, along with avoiding tight jewelry, clothing or shoulder straps.
Patients also want to avoid straining or overloading the muscle in the arm. However, this does not mean that you should avoid exercise. In fact, recent studies have shown that slowly progressive strength training is safe for breast cancer survivors and that among women who participated in twice weekly, slowly progressive strength training, the risk of lymphedema flare-ups decreased by half. Strength and body image improved as well. The important point is to start gradually and build up over time.
Patients who have had lymph nodes removed are also advised to avoid infection to the arm on that side by keeping it clean and moisturized, using an electric shaver instead of a blade, and using insect repellent to prevent bites. Also, when getting a manicure, ask your technician not to cut the cuticles on your fingers, but to push them back gently. It’s also a good idea to wear gloves when gardening to avoid cuts.
Preventing burns is also important. Use sunscreen and avoid drastic temperature changes and activities that irritate or chap the skin. Use oven mitts for cooking and gloves when washing the dishes.
Changes in air pressure can cause a collection of fluid in the limbs, so patients at risk for lymphedema are advised to wear a compression sleeve and gauntlet on the hand when they fly (and at other times) to control swelling. Today, a company called LympheDivas™ makes the sleeves and gauntlets in a variety of colors and patterns.
Also, when traveling, be careful not to lift or carry heavy luggage, which can overload muscles and cause swelling. Drink plenty of water, because dehydration will draw in protein molecules to hold water, which can cause or worsen edema.
Q. Is lymphedema temporary? What are the current treatments?
Lymphedema can be temporary or chronic, but it in either case, it can almost always be managed. The goals of treatment are to utilize remaining lymph vessels and other lymphatic pathways, decongest swollen body parts, eliminate scar tissue, avoid the re-accumulation of lymph fluid, decrease the risks of infections, and maintain the normal or near normal size of the limb. Strategies to achieve these can include meticulous skin and nail care, manual lymph drainage, compression bandaging, remedial exercises, and training in self-care and lymphedema management.
We are very excited to be one of the few hospitals in the area to offer laser therapy for lymphedema. It currently has been FDA approved for breast cancer but we hope soon that it will be approved for all lymphedema treatment.
Q. What is the role of the lymphedema therapist?
Lymphedema can be an overwhelming condition, altering a patient’s physical appearance, lifestyle, and self-image. It often causes feelings of anger, frustration, sadness, fear, or hopelessness. But it doesn’t have to be that way. The role of the lymphedema specialist is to support the patient as the oncologist coordinates a tailored treatment plan, and to help the patient adhere to the plan. The lymphedema specialist is there to offer strategies and coping tactics based on both the latest research and on her experience with a wide range of patients.
Lymphedema is a condition that can be successfully managed through teamwork between the patient and her providers. The Fox Chase Women’s Cancer Center is committed to working with women to minimize the effects of lymphedema physically and emotionally, so that no one need feel she is on her own in managing it.
Denial and Other Coping Strategies
Dealing psychologically with a cancer diagnosis is a challenge for anyone, and as individuals, we respond in different ways. At Fox Chase, we have both a Psychosocial and Behavioral Medicine Program and a Behavioral Research Core Facility to study the ways in which patients cope with cancer, and to offer tools to help. Below is an excerpt from an article on Denial by Suzanne Miller PhD, director of these programs that appears in the current issue of Coping with Cancer magazine. In it, she helps us separate healthy coping mechanisms from unhealthy ones, and gives advice for managing the stress of living with cancer. If you have any questions for Dr. Miller on dealing with the psychological challenges of cancer, please feel free to submit them here, or contact her office through Fox Chase Cancer Center at 215-728-6900.
Denial can be good.
As one of the psyche’s primary defense mechanisms, denial is a natural way of distracting from or selectively editing out a painful reality. There are times when denial is a useful strategy that allows people in overwhelming life situations to keep on going and still deal with their diagnosis.
It might be useful, for example, to deny the worst case scenarios and focus on the fact that as many as 95 percent of early stage cancers are manageable, that there are good treatments and skilled practitioners, and that new treatments are being developed every day. Some might call this maintaining an optimistic perspective.
So then, how do we know whether our denial is healthy or not?
Healthy denial involves being able to acknowledge the diagnosis, communicate with our family, discuss a plan with our health care team, and, then, having processed it, move on to other life tasks. While it might look to others that we’re in denial, what we’re really doing is “blunting” the impact of the diagnosis so that it has the least psychological impact on our life and our psyche. This is actually a positive way to deal with the challenges of needed medical procedures, office visits, and other interventions.
Unhealthy denial, on the other hand, runs the gamut from an individual refusing to acknowledge that there is anything wrong, to the person who is slowly taking it in but refusing to take any action, rationalizing that there is time, there are no symptoms, and there are more important things in life to address right now.
For caregivers, it’s important to know whether a loved one who has been recently diagnosed is adhering to physician recommendations. If she has discussed the situation with her health care team, made her disease management decisions, and has still decided to go ahead with an overseas vacation for example, she is likely engaging in a healthy form of denial – allowing a distraction, engaging in her life, and being optimistic in a reasonable way.
Time can be the key to understanding whether denial is healthy or not. When we’ve just been hit with unexpected news about our health, it’s okay to take time to accept and understand it. Only then are we equipped to hear the options and make the best personal choices around our situation.
But for some, a serious diagnosis is such a shock to our self image and sense of vulnerability, that we need support to bridge the mental gap between thinking of ourselves as healthy, and yet acknowledging we are ill. With this type of denial, a caregiver can help the individual get through the coping process, step by step, to help the survivor regain a sense of control over his or her life:
In the case of cancer, we never know if the initial diagnosis is fully correct, or how it will play out in our specific case. Part of the psychic challenge is learning to cope with uncertainty. But with the help of loved ones, health professionals and other support systems, we can feel more in control of our options and our futures. And it is this sense of control that helps improve our quality of life and avoid an ongoing need for denial.
Suzanne M. Miller, PhD