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Q&A: Cancer Survivorship: Living Beyond Cancer
Introduction
PLWC Q&A Forum Cancer Survivorship: Living Beyond Cancer with Sandra Horning, MD; Melissa Hudson, MD; Ann Partridge, MD, MPH; and Doug Ulman
PLWC Q&A forums are month-long events on a specific topic. During the month, guests may submit questions to leading cancer experts. Each week, answers are posted on People Living With Cancer. PLWC Q&A forums are free of charge, anonymous, and preregistration is not required.
Please keep in mind that these doctors are unable to give individual medical advice in this setting, nor are they able to address questions that include information specific to one person's medical profile.
The information presented here is for informational and educational purposes only and is not intended to substitute the professional medical advice or treatment recommendations provided by your doctor.
This forum is neither intended nor appropriate to serve as a means of obtaining a second opinion on cancer diagnosis or treatment. In response to questions about specific drugs, comments will focus only on the state of current research and clinical trials.
It is advised that you do not delay seeking professional medical advice based on any information contained in this Q&A forum.
This forum is governed by all terms and conditions of the People Living With Cancer website. Participation in this Q&A forum means that you fully understand and agree to abide by the terms and conditions of the People Living With Cancer website.
The featured experts include Sandra J. Horning, MD, Stanford University Medical Center; Melissa Hudson, MD, St. Jude Children's Research Hospital; Ann Partridge, MD, MPH, Dana-Farber Cancer Institute; and Doug Ulman, Lance Armstrong Foundation and Ulman Cancer Fund for Young Adults.
Sandra J. Horning, MD, is a Professor of Medicine in the Divisions of Medical Oncology, and Blood and Bone Marrow Transplantation at Stanford University in Palo Alto, California, and was the 2005 – 2006 President of ASCO. Dr. Horning's research interests include the biology and management of lymphoma and finding new treatments for these diseases.
Melissa Hudson, MD, is a Full Member in the Department of Hematology/Oncology at St. Jude Children's Research Hospital in Memphis, Tennessee, and Professor of Pediatrics at the University of Tennessee Health Science Center College of Medicine. Dr. Hudson directs the After Completion Therapy Clinic, which oversees the care of more than 5,000 childhood cancer survivors, and has authored numerous publications about childhood Hodgkin disease, late effects of childhood cancer treatment, and health education of childhood cancer survivors.
Ann Partridge, MD, MPH, is a medical oncologist specializing in breast cancer at Dana-Farber Cancer Institute in Boston and an Assistant Professor of Medicine at Harvard Medical School. Her research interests include fertility issues for young women with breast cancer.
Doug Ulman is a three-time cancer survivor and national cancer survivorship advocate. Doug founded the Ulman Cancer Fund for Young Adults and is now the Director of Survivorship for the Lance Armstrong Foundation in Austin, Texas.
Last Updated: August 28, 2008
Questions Posted August 1, 2006
Question 1: There have been discussions in my support group that several common drugs for breast cancer cause heart problems. Could you tell me what these drugs are and what the risks are?
Dr. Partridge: When considering any breast cancer treatment, one must carefully weigh the benefits and the risks of each treatment, in light of the underlying risk of the breast cancer. The benefits of treatment are generally related to risk of disease (higher risk of disease, greater benefit from treatment), whereas the risks of the treatment are generally stable for a given individual.
Many drugs for breast cancer have associated risk of cardiac problems. For example, doxorubicin (Adriamycin) chemotherapy is associated with an approximate 1% risk of heart failure (damage to the heart muscle that is sometimes irreversible) when given in the most common ways for early-stage breast cancer. Trastuzumab (Herceptin) has been associated with an even greater risk (up to 4% to 5%) of heart failure in some studies. However, when considering the use of these drugs to treat breast cancer, the benefits of the treatments in terms of reducing risk of cancer recurrence or controlling the cancer usually clearly outweigh any small associated cardiac risk and other potential risks.
Risks associated with treatments may also vary from individual to individual based on a person's age and previous medical history. Other common drugs that are associated with a small risk of cardiac problems (<1%) include paclitaxel (Taxol), cyclophosphamide (Cytoxan, Neosar) in high doses, and fluorouracil (5-FU). There is also concern that common hormonal agents, such as tamoxifen (Nolvadex) and aromatase inhibitors, may also slightly increase the risk of heart problems, although data in this area are limited.
Question 2: I am two years past cancer treatment. My husband was very supportive during the diagnosis, the lumpectomy, radiation therapy, and the chemotherapy, but once I stopped regular treatment (evidently tamoxifen doesn't count!) he seemed to think everything was going to go back to the way it was. I'm not sure what to do, and I'm not sure if he wants to talk about what he feels.
Dr. Partridge: This is an extremely common phenomenon. When women are newly diagnosed and going through "active" treatment, everyone, including the woman herself, rallies to get through the ordeal. However, once the transition to survivorship has begun, well-intentioned friends and loved ones may think and want to believe that a woman is feeling better, and may desire things to get back to normal. During this time and beyond, a woman continues to experience the medical and psychological repercussions of her breast cancer diagnosis and treatment.
Some women may feel even worse than they did (initially and during active treatment), from a psychological standpoint. Having breast cancer is a life-altering experience for most women. It is difficult to move forward with the new uncertainty that breast cancer survivors must face, not to mention the new body, etc. I recommend to my patients and those who care about them that they recognize this, and try to move forward, perhaps more slowly than before in their "new normal" lives and bodies. Sometimes, personal counselling or couples counselling can be of benefit. There are also an excellent videotape that discusses this very issue available through the American Cancer Society about Moving Beyond Breast Cancer that is available for free (1-800-4-CANCER).
Question 3: What dietary recommendations do you have for a breast cancer survivor wishing to continue to remain cancer free?
Dr. Partridge: Several studies have evaluated the issue of diet after breast cancer, and many results are inconclusive or have not been validated. To date, the best available evidence regarding benefits of lifestyle and diet after breast cancer suggests that women with a history of breast cancer not gain weight, lose weight if overweight, eat a well-balanced diet that is low in fat if possible, and exercise regularly. Of course, this is good advice for all women, not just breast cancer survivors. For many women, especially those who are overweight or do not exercise, it is helpful to consult with a nutritionist or your primary physician regarding diet recommendations and exercise that may be good for you.
Question 4: How do you know if you are at risk for premature menopause? I'm 39, stage IIIc breast cancer, and have finished AC chemotherapy (doxorubicin and cyclophosphamide).
Dr. Partridge: By virtue of being premenopausal, a woman is at risk of premature menopause. Chemotherapy increases the risk premature menopause. The risk of going into menopause during or immediately after treatment increases with increasing age at treatment and type of chemotherapy received.
For example, a woman under 40 who received AC chemotherapy has an approximate 15% risk of entering menopause from chemotherapy, whereas for women over 40, that risk increases to approximately 40%. For women in their 30s who receive CMF chemotherapy (cyclophosphamide, methotrexate, and 5-FU), they have about a 40% chance of entering menopause from chemotherapy, and women older than 40 would have upwards of 80% risk of entering menopause.
For many young patients, periods may temporarily stop during or immediately following chemotherapy. It can be difficult during this time to know whether a woman is truly post-menopausal or just temporarily amenorrheic (not having periods). Taking the drug tamoxifen may result in the temporary cessation of menses or irregular periods; however, tamoxifen is not clearly associated with increased risk of permanent amenorrhea.
There is also evidence that women who do not enter menopause immediately following chemotherapy may enter menopause sooner than they would have had they not been treated with chemotherapy. For example, a woman who receives chemotherapy at 35 may be more likely to go through menopause at 40 (average age in this country is approximately 51) than had she not received chemotherapy. ASCO recently published guidelines regarding risk of infertility (or menopause) in cancer survivors. Read the What to Know: ASCO's Guideline on Fertility Preservation.
Question 5: I know that my self-confidence and self-image changed drastically while undergoing cancer treatment and fortunately, I have a very supportive circle of friends who helped to boost my confidence. What are some organizations that help women improve their self-confidence and image while undergoing cancer treatment? I have heard of organizations that collect breast prostheses for women and hair for wigs. I would like to give back to the community by getting involved with these types of organizations, any ideas?
Dr. Partridge: There are numerous advocacy and support organizations for women with breast cancer, and I am sure that they would welcome your input and support. Local cancer centers and clinics often have support groups and volunteer opportunities for cancer survivors, where you could help women in your community. There are also regional, national, and international groups. A few of the more well-known groups include: American Cancer Society, Susan G. Komen Breast Cancer Foundation, Young Survival Coalition, and NETWORK of STRENGTH.
Last Updated: August 28, 2008
Questions Posted August 7, 2006
Question 1: I was treated and cured of Wilms tumor when I was a toddler. I've lived a rather healthy and normal life since. I've been reading that having cancer as a child may put me at greater risk as an adult. Is there a special kind of doctor that I should meet with? What if I don't have my medical records from all those years ago? Is there a process to go about getting them? Thank you for your help. Dr. Hudson: The risk of health problems after treatment for childhood cancer depends on the child's age at the time of treatment, the specific type of cancer, the sites of the body involved by cancer, and the specific type and amount of cancer therapy (surgery, chemotherapy, radiation). Because of this, it is very important for a cancer survivor to have a summary of his or her cancer history to share with health-care providers who assume care after completion of cancer therapy. Medical records that are needed to organize a summary include pathology and surgery reports, chemotherapy and radiation therapy administration records, and hospitalization and consultation reports providing information about complications during and after treatment. The best option is to ask the doctor who treated your childhood cancer to write a letter summarizing your diagnosis and treatment, future health risks, and recommended screening tests. If this is not possible, you should contact the medical records department at the cancer center where you received treatment and tell them that you want to sign a release to obtain your medical records. You may ask the records to be released to you or your primary care physician. Once you learn the details about your cancer history, you can use a resource like the Children's Oncology Group Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent and Young Adult Cancers. The Guidelines offer information about health risks associated with the common chemotherapy agents, radiation fields, and surgeries that are used in the treatment of pediatric cancers. Some universities and cancer centers have programs that specialize in health problems, or late effects, that may occur after childhood cancer. These childhood cancer survivor clinics usually offer complete check-ups and counseling about problems that may develop after cancer and ways to help stay healthy. The Association of Cancer Online Resources (ACOR) maintains a listing of childhood cancer survivor clinics. To be included on this list, the center must have a dedicated time and place for a survivor clinic that meets at least twice a month. Currently there are over 30 clinics listed that provide services in over 20 states. Some clinics only provide care to child or teen survivors, while others also provide care to adult survivors. Other centers specifically see only adults who have been treated for childhood cancer. Finally, some centers only see survivors who received treatment for childhood cancer at their centers. This resource may help you identify a late effects specialist in your area who can work with your primary care doctor to outline a follow-up plan. Most survivors have their care managed by a physician in their community, such as a family physician or an internist. Because childhood cancer is relatively uncommon, the chance of finding a doctor outside a pediatric cancer center who has a lot of experience in this area is rare. Some doctors may have one or two adults in their practice who were treated for childhood cancer, but most will have none. Sharing information like your cancer treatment summary or resources like the Children's Oncology Group Guidelines can help community doctors become more familiar and comfortable with taking care of the special health needs of a childhood cancer survivor. Question 2: I had ALL when I was 17 and have been in remission from ALL for nine years, and I am experiencing joint problems and pain in my knees and hip. My sister thinks it has something to do with my cancer treatment. Could this be true? Is there someone I should see about these problems? Dr. Hudson: Some cancer treatments can cause joint problems by disrupting the blood supply to the bone. This can weaken the bone and lead to its collapse, causing a condition known as osteonecrosis. (Other names for osteonecrosis are avascular necrosis or ischemic bone necrosis.) If the blood supply near a joint is affected, the joint surface may collapse, resulting in pain and inflammation (arthritis). Corticosteroids (like prednisone and dexamethasone) are the most commonly used cancer treatments that have been linked to osteonecrosis. Corticosteroids are also routinely used in the treatment of childhood ALL. People treated with a bone marrow transplant are also at risk for developing osteonecrosis. Osteonecrosis is a bone problem that usually occurs during treatment, as opposed to years after completion of therapy, so the course of your bone pain is not typical for this condition. An x-ray test is usually the first test to check for osteonecrosis, but it may show changes only in later stages when there is more damage to the joint. A magnetic resonance imaging (MRI) test is one of the most useful tests in making the diagnosis of osteonecrosis in the early stages. Discuss your joint pain with your primary care doctor and ask for his or her recommendation about whether you should have x-ray or MRI studies done to check for osteonecrosis. If the diagnosis of osteonecrosis is made, or if your joint pain continues, your doctor may recommend further evaluation by an orthopedic surgeon (bone surgeon). If your imaging studies do not support the diagnosis of osteonecrosis, your doctor may recommend further evaluation by a rheumatologist (arthritis specialist). Question 3: I hear a lot of people talking about reaching their five year anniversary as a cancer survivor. Why is the five-year milestone significant? Dr. Hudson: Most children who have completed cancer therapy and stayed in remission for five years are likely "cured" of their disease. At this time, cancer specialists begin to worry less about cancer recurrence and encourage patients to focus ways to stay healthy after cancer and monitoring of health conditions that may be caused by cancer treatment. Some cancer patients may be discharged from cancer follow-up at this time. Also, insurance companies often recognize the significance of the five-year remission point by refusing to provide health coverage until a patient reaches this milestone. Question 4: My son had a bone marrow transplant to treat his Hodgkin lymphoma about five years ago when he was 11. He leaves for college next month, and we are wondering what medical records to send with him or if there are long-term side effects from the transplant, radiation therapy, or chemotherapy that we should watch for. Thanks. Dr. Hudson: When young adults with a history of childhood cancer move to a new community, they should always identify a physician in the area who can take over their medical care, even if it's only a temporary move (related to college). This is especially important if the cancer history has been complicated by relapse, required procedures like bone marrow transplant, or resulted in chronic health issues. It's best to make an appointment when you are well to share the details of your cancer history and allow the doctor to do a baseline physical exam. This will help the doctor be better prepared should you present later with new health problems. At the very least, your son should take a copy of a treatment summary stating his diagnosis, treatment, future health risks, and recommended screening tests (see question #1 for more details). The summary should also have the name, address and phone number of your son's pediatric cancer center and primary cancer doctor(s) who can be contacted should health problems arise. It is also helpful to include a list of chronic health problems that may have been caused by the cancer or its treatment and current medications. For example, a common health problem in survivors of Hodgkin lymphoma treated with radiation to the neck is hypothyroidism. The summary should note a chronic health condition like this, the type and dose of thyroid hormone medication, and the endocrinologist or other doctor who is prescribing the medication and monitoring thyroid levels. Your son should keep a personal record of the summary and provide a copy to his new physician and/or health center on campus. You son's risk of long-term side effects after bone marrow transplant for Hodgkin lymphoma at 11 years old depends on the specific chemotherapy he received and the organs/tissues in the radiation treatment field (if he received radiation therapy). The treatment commonly used for Hodgkin lymphoma may affect dental health, thyroid, heart, and lung function, as well as the ability to have children (fertility). Some treatments for Hodgkin lymphoma also increase the risk of survivors developing a second cancer. These health risks may be higher in survivors treated with bone marrow transplant for unresponsive or relapsed cancer. However, the doses of chemotherapy and radiation therapy given to children are routinely restricted to safe levels to reduce the risk of these harmful effects as much as possible. Your primary cancer doctor, who has more detailed treatment information, should be able to provide you with the most specific information about your son's risk of health problems after bone marrow transplant. Question 5: My 4-year-old has trouble walking and the doctors say it is neuropathy and are blaming the vincristine. How long does this last? What can we do? Dr. Hudson: Neuropathy, or damage to the peripheral nerves (outside the brain or spinal cord), is a common side effect of certain chemotherapy agents including vincristine, vinblastine, and cisplatin. Sensory nerve injury may cause burning, tingling, numbness, pain, or increased sensitivity to touch. Motor nerve injury results in muscle weakness or poor balance and coordination. Most commonly, neuropathy affects the hands and feet. Rarely, nerves in the head and neck are affected, resulting in jaw pain and hoarseness. Fortunately, in most patients, symptoms improve or completely resolve once treatment is completed. Rarely, sensory changes like numbness or muscle weakness may persist after completion of therapy. Treatment for neuropathy is directed at controlling symptoms. Physical therapy provides exercises to improve strength, balance, and coordination. Splints or braces (orthotics) may be prescribed to support the feet and ankles and reduce the chances of injury from falls. Medications can also be prescribed to control symptoms like pain, tingling, burning, and other uncomfortable sensations. Occasionally, if a child develops severe neuropathy, doses of medications like vincristine may be reduced or withheld.
Last Updated: August 28, 2008
Questions Posted August 14, 2006
Question 1: Is there any chance of getting life insurance as a cancer survivor? I just got engaged and am thinking about my financial status. I am three years post-treatment, with a great prognosis.
Doug Ulman: Many cancer survivors are able to obtain life insurance, but it often takes considerable time and a lot of research. I was able to qualify for life insurance after I passed the five-year survival milestone and after working with an insurance broker who knew which companies would be more amenable to offering me a product. I suggest that individuals find an insurance agent or broker who will take the time necessary to explore all options. There are many great resources available to help, including Lance Armstrong Foundation SurvivorCare that may be accessed at www.livestrong.org/survivorcare or by phone at (866) 235-7205.
Question 2: I've recently accepted a new job, and I'm wondering if I have an obligation to inform them about my medical history. My cancer treatment ended 18 months ago, but what if I need additional therapy?
Doug Ulman: Congratulations on your new job. I would check the law in your state to learn of any official obligation to disclose your medical history to your employer. I suggest that you contact a lawyer with an expertise in health care to determine how best to proceed.
Question 3: I am a cancer survivor and am very interested in establishing a survivorship networking program in my community and with the cancer clinic where I received my treatment. Can you recommend some organizations that could provide some guidance to get this project off the ground?
Doug Ulman: Your desire to give back in your community is inspiring. Depending on where you live, I would suggest meeting with the social work staff at your hospital or a nearby cancer clinic to determine what needs might exist for survivors in your area. They can help point you in the direction of local organizations such as Gilda’s Club, The Wellness Community, and the American Cancer Society, among others. Additionally, you can find organizations in your area by visiting www.livestrong.org. Thank you for all that you are doing to help others in your community.
Question 4: I've just completed my treatment for ovarian cancer, and I'm getting ready to head back to work. How can I make the transition easier for my coworkers and me?
Dough Ulman: First and foremost, congratulations on completing your treatment. Heading back to work can be an exciting time, but also a time of uneasiness as many coworkers may not understand what you are going through. I would suggest being open and honest with your coworkers so that they know how you are feeling. Completing treatment is a wonderful milestone, but it does not signify the end of the cancer experience, as there frequently are many emotional, physical, and practical challenges that remain. Several personal stories from survivors who discuss their experiences returning to work post-treatment are available at www.livestrong.org. Once again, congratulations on this important milestone.
Question 5: After 16 months of treatment, I have a wonderful prognosis and seem to be cancer-free. However, sometimes I get very nervous about my health, much more so than I did during my surgeries and chemotherapy. Is this normal? How should I cope with this?
Doug Ulman: I am so glad that you have received a wonderful prognosis! I think your feelings are entirely consistent with your experience. As a cancer survivor myself, I have felt exactly the same way on numerous occasions. Many times, there is a greater sense of control during treatment, as regimens are set and timelines are known. Once you finish treatment, there are many unknowns that can cause survivors to worry about their health. When I approach my check-ups today, more than nine years post-treatment, I still worry and wonder about the outcome. This is a normal part of my life, but I don't let it put a damper on my optimistic outlook and my desire to live life to the fullest.
Question 6: As an eight-year survivor, I've tried to give generously to cancer groups. However, there seems to be more organizations than ever to choose from. What qualifications should I look at, to decide if my money would be well-spent?
Doug Ulman: Many wonderful organizations exist to help fight cancer. With so many organizations from which to choose, I recommend you visit an impartial charity evaluator like Charity Navigator, available at www.charitynavigator.org.
Last Updated: August 28, 2008
Questions Posted August 21, 2006
Question 1: I was diagnosed with non-Hodgkin lymphoma (NHL) ten years ago, and have been cancer-free for six years. How important is follow-up? If it's been gone for six years, what are the chances it's coming back?
Dr. Horning: Among the 30 types of NHL, some are very unlikely to recur after six years and others require ongoing surveillance. Check with you hematologist/oncologist as to the appropriate follow-up for your lymphoma subtype.
Question 2: Are there any unique resources for people whose cancer is expected/likely to recur? I have metastatic leiomyosarcoma, and have experienced periods of remission (from six to 18 months) after each treatment. I believe that I face some different issues than other long-term cancer survivors, even during my periods of remission.
Dr. Horning: The concerns for health and quality of life are different for individuals who expect to continue to require treatment for their cancer on an ongoing or intermittent basis. I am not aware of unique resources for this group that are widely available. However, finding coping strategies and diversions and setting achievable goals are important to adapt to your circumstances. Support groups available in oncology centers, private practices, and supportive care programs such as the American Cancer Society and Leukemia and Lymphoma Society may be helpful.
Question 3: I'm moving this fall for a new job opportunity. After seven years with my oncologist, I think switching doctors may be the biggest concern of mine about the move. Unfortunately, my current doctor doesn't know anyone personally in my new city. How do I go about finding a new oncologist that I'm comfortable with?
Dr. Horning: Changing oncologists can be traumatic, but a variety of resources are available. If moving to a city with a medical school, you can inquire about specialists in your cancer type there. Checking to see if oncologists in your new city belong to professional organizations that provide continuing education, such as ASCO, can be helpful in your search. Foundations related to your specific cancer type frequently have local chapters across the states, and these groups can help facilitate your finding a new oncologist. Contacts in your new business may take you to primary care physicians who can also make recommendations.
Question 4: I am 24 and am finishing treatment for stage III Hodgkin lymphoma. My doctor talks about coming in for CT scans, but I"ve talked to other people who have had more extensive testing PET scans, etc. What's the best course of follow-up care and/or what do I ask my oncologist?
Dr. Horning: We are in a transition period with the more routine use of PET scanning. Although sensitive, this imaging can also lead to false-positive results. Current recommendations are to use CT scans for routine follow-up care of patients with Hodgkin lymphoma, but fused CT/PET images are becoming more popular and can serve as a substitute. With either type of scan, the necessary area for imaging for recurrence can be covered.
Question 5: I am trying to lose the weight I gained during CML treatment, and I am on a low-carb diet. Is this diet going to affect the results of my upcoming PET scan?
Dr. Horning: Your diet will not affect results of the PET scan.
Question 6: I have had dental problems, such as brittle teeth and tooth sensitivity, since I finished my radiation therapy and chemotherapy treatments. My oncologists did not warn me about this side effect. Are there any studies on cancer treatments and their effects on the teeth or jaw?
Dr. Horning: Dental problems are variably related to chemotherapy or radiation therapy, and there is a rich literature for your health-care professional to consult. Radiation of the head and neck can result in a variety of consequences that affect oral health. Chemotherapy is less likely to result in persistent dental problems unless there are complications. However, recent data have linked bisphosphonates, especially in the treatment of myeloma, to jaw problems in the setting of dental work. It is important to let your dentist know in advance about any type of medical problem or medication exposure. A good place to start is to talk with a dentist who works closely with medical and radiation oncologists.
Last Updated: August 28, 2008
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