|
Friday, June 26th from 9 a.m. - 12:30 p.m., Methodist Estabrook Cancer Center hosted a complimentary survivorship program, Dealing with Cancer – It’s a Family Affair. At our cooking demonstration recipes and tips were shared and demonstrated by Chef Mike Flanagan and our Oncology Dietitian, Chandy Lockman Hoke. Please see our nutrition program section for recipes and tips for your kitchen.
There were many important questions during our question and answer session. We hope you find these questions and answers helpful so together, we help those touched by cancer live with, through and beyond cancer.
These are the answers provided by our Harper's Hope representatives:
1. Is there a support group for “malignant melanoma”? Also, information on interferon or the centers for best care of malignant melanoma?
Answer: There is not a support group specifically for melanoma in Omaha. There are several online support groups about melanoma, but we aren’t familiar enough with any of them to recommend one. If you try an online support group, protect your personal information. Some online support groups have a medical advisor overseeing the answers and others just allow free access to anyone who wants to ask or respond to a question. So, be careful of any information you get from an online support group and check out the medical accuracy of answers with your own physician.
2. The hardest thing for me is telling my aging parents about my medical problems. They worry a lot. How do you communicate with older parents?
Answer: Generally being honest is the best policy. You would probably rather have your parents hear the news from you instead of from a friend or relative. You also need to be aware of how your parents will take the information. If you live in the same town, it’s usually best to deliver the news in person so they can see you. Your presence is reassuring. If you live in a different town, you may want to go for a visit to deliver the news or to have someone be with your parents after you deliver the news by phone. One of your siblings or relatives, a neighbor, or a friend might be able to come and visit with them for awhile to help them process the news. As with your children and other family members, it’s best to give them information in terms they can understand and to only give as much information as they need at any one time.
3. My teenage son seems like he’s not interested at all in what’s happening with my cancer. In fact, he sometimes is demanding and angry with me when I’m too tired to do what he wants me to do. And, he keeps signing up for sports & activities so he is never at home. Is this normal?
Answer: It can be a very normal response. Teenagers are in the business of trying to become independent, but at the same time they are usually still dependent on their parents for food, clothing, shelter, transportation, and funds. They also are learning about who they are as people, so they tend to be focused on themselves and their own needs. When a parent has cancer, it’s very inconvenient for a teenager. What they want is for you to be in the background being dependable and able to help them when they need it. If you’re sick or not yourself, teens can feel anxious. The anger is often an expression of anxiety. And, when we get angry back, we often look like we have more energy than we actually have. In some ways, having mom or dad yell at them can be reassuring – you may look normal when you’re angry than you do when you’re lying on the couch. Sometimes teens cope with parental illness by helping out more, but usually they seem to spend even more time with friends, activities, and work so they seem to never be home. This is a way to manage their own anxiety and to surround themselves with support. It’s not a bad thing, but the family may have to have some discussions about what’s needed from each member to get through mom or dad’s illness.
4. Who is the best contact to help with pain management?
Answer: Start with the physician you see the most. If he or she is unable to manage the pain sufficiently, you might want to seek referrals to a pain clinic, a physical therapist, a psychologist or mental health practitioner who deals with pain, or body worker. Doctors at the pain clinics are trained in anesthesia of different kinds and can offer a variety of medications and injections to diminish pain. Physical therapy can help with many kinds of pain by strengthening or aiding in the healing of muscles and joints that have been injured; they can also help with typical cancer after effects like painful scars or frozen shoulders. Physical therapists who have specialized training in lymphedema management can help decrease the painful swelling in limbs after lymph nodes have been removed.
Sometimes you might also get a referral to a psychologist, a mental health practitioner, or a psychiatrist. This is NOT because the doctor thinks the pain is all in your head. It is because pain is actually increased when your muscles are tight or you are tense or anxious. Learning some stress management and activity management strategies from a counselor can help minimize pain as can learning biofeedback or self-hypnosis techniques. A psychiatrist has special training in brain chemistry and can often find medications that help minimize the pain signals the brain receives.
Last, there are many types of body work that can relieve pain, at least temporarily. Massage therapists, reiki practitioners, Healing Touch practitioners, acupuncturists, and other body workers can often loosen tight muscles and help a person be more comfortable.
There is research to support the efficacy of all of these pain management avenues, so don’t give up. If you have pain, let your doctor know and try a variety of pain management techniques until you find the right combination for you.
5. How/will/when will I feel normal again?
Answer: That depends a lot on your unique situation. Cancer affects all of you, body, mind and spirit. Some parts of you may feel normal or even better or stronger than before; other parts of you may lag behind. Some things may never go back to the “old normal.” Many times people have unrealistic expectations about how soon they will feel good again after their last treatment. While people are generally hoping that they’ll feel good again in a month – and they often do feel better – many side effects of treatment can last for many months or even years.
Fatigue, “chemo-brain,” and anxiety about recurrence are frequently longer lasting side effects. Depression and anxiety can be treated and if you are experiencing those during or after treatment, get help right away. They will resolve a lot faster with the right treatment. Counseling or medication or changes in activity or nutrition or some combination of those things will usually help. If you aren’t feeling at least somewhat better within 3 months after the end of your treatment, talk to your doctor and to a behavioral health team member for help in finding the right resources for you.
6. Is there any data on the percentage of recurrence in prostate cancer if someone has gone into remission?
Answer: The answer to this would be yes. There is a lot of data on recurrence. The question really is twofold. First, what data would actually apply to your particular case. And second, why do you want to know.
First, not all statistics that you read apply to you. The prognosis differs a lot depending on your age, the stage of your cancer at diagnosis, the type of tumor you had, and many other individual factors. Your doctor would be the best person to tell you what your own prognosis is.
Second, do you really want to hear statistics? Remember that statistics are the averages of many, many cases. They do nothing to tell you about any one individual’s outcome. If you find out that recurrence is very low, would you stop worrying? If you found out that recurrence is very high, would you do anything differently? For many people, when they really think about it, they don’t want to know what the statistics say. They just want to do everything they can to maximize their health and not have any prognosis floating through their minds. Think about what is best for you and if you want data about your disease, ask your own doctor.
7. Is the recovery process different – emotionally, spiritually, family-wise, etc. for ongoing pill form chemotherapy as opposed to standard time-limited (or active) treatment?
Answer: As new medications come out, we get more information about the side effects of different kinds of treatment. If you want to know the typical side effects of your medication, you can ask your doctor and/or read the package inserts supplied with the drug. There can be a difference between ongoing chemotherapy vs. time limited chemotherapy. When the treatment is time limited, a person seems to have more of an expectation that there will be a time when treatment is over and people can’t wait for that time to come. There is a thinking pattern that says “things are like this now, but when treatment is OVER things will be better.” People in time-limited therapy tend to cope with what comes up in treatment, but to see recovery as something that will start after they don’t have to deal with treatment any more. In some ways recovery is postponed until after treatment stops.
For people with ongoing therapy, they realize that they may always be on some form of treatment, so they don’t delay recovery. On the other hand, they can’t wait until the end of treatment to start the emotional, spiritual, and family work; they have to try to recover in these ways while they may still be physically having ongoing side effects. They see cancer more as a chronic disease that has to be managed and they start learning how to work their lives around their treatments. Different people respond differently to time limited vs. ongoing treatment. The longer your therapy takes, the more you may want to consult with other survivors, a support group, or a behavioral health specialist to help you with your own recovery process.
8. Can you explain (again) that all cancers have different stages & you can’t compare your patient to a neighbor, co-worker or people who are famous – like Lance Armstrong – each has different support systems not to mention financial means?
Answer: What you are saying is very true. Each person has a unique cancer and each person’s body, treatment, pre-cancer health, support system, financial situation, etc. is different. It never helps to compare oneself to someone else. The neighbors or co-workers who are comparing you probably wouldn’t look too good themselves if they were compared with Olympic level athletes. I think the thing we all want – whether or not we have cancer—is to be seen by others with compassion and understanding. It’s hard living with cancer (and sometimes it’s hard living even if you don’t have cancer). We’re all best not to judge others.
9. Is there anything that can be done for ascites (body fluid accumulation)?
Answer: Ascites is fluid buildup in the peritoneal cavity of the body. The fluid can be drained if it’s excessive and uncomfortable. For information about your specific condition and treatment options, it’s best to talk to your doctor.
10. I know it’s important for my mom to exercise, but she says she’s too tired & won’t even try. I think she would feel better if she would start doing more. How do you motivate someone who feels so fatigued?
Answer: I think it is important for your mom to understand that to benefit from exercise she does not have to commit to doing a long intense exercise program. She can benefit from doing a low intensity activity, for example starting out with a 5-10 minute walk a couple times a day. Slowly and regularly she can try to increase the time and amount of exercise to gain back strength and endurance. As demonstrated in my presentation, a large number of studies have shown that patients reported improvements with fatigue levels after participating in regular exercise interventions. The research has also demonstrated that exercise greatly improves quality of life measures reported by patients
12. What would be a good exercise for a lung cancer patient that wouldn’t cause much activity due to breathing issues?
Answer: Simple isometric exercises (where you maximally contract a muscle without moving it) and low intensity strengthening exercises can help build muscle and help with reconditioning without increasing the demands on the lungs like aerobic activity does. Interval training where higher intensity exercise is combined with low intensity exercise also is found to be effective with reconditioning and may be less aerobically taxing.
13. How do we sign up for exercise class?
Answer: Contact Shanda Freitag, PT who is the Harper’s Hope Physical Wellness Coordinator. Her phone number is 402-354-0816. You will need to be medically released by your doctor before you can participate.
14. What are available exercise classes for cancer survivors?
Answer: The exercise classes that are currently being offered are: Pilates, Strength Training, and Aerobics. The Pilates classes are on Tuesdays and Thursdays, one class at 11:00am and one at 5:00 pm. The strength training classes are on Mondays and Wednesdays at 5:00pm or Tuesdays and Thursdays at 4:00pm. The aerobics class is on Mondays, Wednesdays, and Thursdays at 6:00pm or 7:00pm. The aerobics class includes both dance aerobics and Zumba.
15. What would be a good motivation for someone who won’t exercise? “To say to them?
Answer: That is the “million dollar question!” I think it always helps to remind people of the many benefits of exercise, both physical and mental. For everyone exercise decreases the risk of getting heart disease, cancer and diabetes. Exercise also helps improve high blood pressure, decreases cholesterol levels, and reduces depression and anxiety. For those with cancer research has shown that regular exercise is associated with decreasing the risk of recurrence. As with most things in life the best thing you can do is be a good role model and integrate regular exercise into your life.
16. Can you explain that when red blood cells are low (along with oxygen levels) that makes you extremely fatigued & lots of times you just can’t hardly walk 10 feet much less do physical activity. Sometimes blood transfusions & shots help – but that doesn’t happen over-nite!
Answer: Often times a side effect of cancer treatment is anemia, a condition where the red blood cells in the body are low. Oxygen is carried by red blood cells so if a person is anemic the body has to work harder to supply oxygen to the tissues and this often results in shortness of breath and fatigue. Anemia can then be treated with certain medications and/or blood transfusions.
17. Perfectionist family members: They are rough on me. How do I help them to ease up on me?
Answer: I would talk with them about your feelings. Help them understand that you respect very much the way they choose to live their lives and that you support them doing that as they see fit. You do not choose to live the same way and would so much appreciate their support for your life style choices. Let them know that the pressure you feel from their attempts to insist that you do as they do, is making life very difficult and unpleasant for you during this already difficult time. Let them know you love them and you need their compassion, understanding, and support at this time.
18. Please describe the at home genomic test available.
Answer: Genetic tests examine genes and DNA to see if they indicate particular diseases or disorders. There are several “at home” tests available; some look at the number and shape of the chromosomes, some look for unusual portions of proteins or sections of DNA. This is from the Federal Trade Commission: “The Federal Trade Commission (FTC) wants you to know the facts about the direct-to-consumers marketing of genetic tests. According to the Food and Drug Administration (FDA), which regulates the manufacturers of genetic tests; and the Centers for Disease Control and Prevention (CDC), which promotes health and quality of life, some of these tests lack scientific validity, and others provide medical results that are meaningful only in the context of a full medical evaluation. The FDA and CDC say that because of the complexities involved in both the testing and the interpretation of the results, genetic tests should be performed in a specialized laboratory, and the results should be interpreted by a doctor or trained counselor who understands the value of genetic testing for a particular situation.”
19. Do insurance companies generally cover prophylactic treatments for breast cancer?
Answer: (As with all things medical, this of course, depends on the insurance company and individual policy.) There are insurance companies willing to cover preventive measures for individuals who test positive for a particular hereditary syndrome. There are several organizations that have published standards for individuals at high-risk and most insurance companies are aware of those standards.
20. If a family decides to do genetic testing & discovers that one member carries the cancer gene but others don’t, what kind of counseling or support does the person at risk need? Is support available?
Answer: As part of the process of genetic counseling, we review the possible results and discuss some of the possible scenarios. It can be very overwhelming to find out about a positive test result. In our particular program, we always offer to put that individual in touch with other families who have experienced the same thing or with one of our Behavioral Health counselors at Methodist Estabrook Cancer Center. There are plans in place for a “support group” for individuals at high risk in the near future.
21. If we have genetic testing done now & next year they find another cancer gene, do we need to do the testing all over again?
Answer: It would of course, depend on the gene testing done and the “new” cancer gene. If there has been some new technology or gene discovery, the genetic laboratory usually has specific testing criteria. Once we hear of the criteria, we review our database and will contact the appropriate individuals. However, we always encourage the individuals that we have seen to keep us updated with any changes in their family histories and to feel free to contact us if they have heard about something in the news and want to find out more information.
22. If we have genetic testing & insurance pays for it, who gets the results from those tests? Does the insurance company have access to the results? Do the results go back to my employer? Are the results released whenever someone requests my medical records?
Answer: If you have genetic testing done, it is your choice about who will get those results. If you have testing done and test positive, you will need to have some preventive treatment or screening. Your physician(s) and insurance company will be more able to assist you in the treatment/coverage if they know the results of your testing. Most hereditary clinics keep their records separate from the general medical records. The Genetic Non-discrimination Act of 2008 is a law that was designed to prohibit the improper use of genetic information in health insurance and employment.
23. Is asparagus taken 2 times a day a successful cancer treatment or antioxidant?
Answer: Asparagus is a vegetable that is high in folic acid, provides other vitamins such as A, C and some of the B’s as well as is a source of fiber. You could say that asparagus is a super food. Definitely a food that we should eat more and more often! That being said, there is no such thing as a magic food. There are no foods that should be viewed as a stand-a-lone treatment for cancer. A healthy diet can help support you during conventional cancer treatment, like surgery, chemotherapy, radiation therapy or a combination of them. Also a healthy diet including more fruits, vegetables and whole grains, choosing lean sources of protein in moderate amounts and eating less processed foods along with other positive physical activity and lifestyle choices can help you decrease your risk of cancer as well as other chronic diseases such as heart disease and obesity.
24. You talk about weight loss. What about weight gain?
Answer: An unplanned change in weight is a common side effect during cancer treatment. Some individuals may gain while others may lose. The risk of cancer and weight gain is in relationship to overall weight status; being at a healthy weight or being overweight or obese. Researchers use BMI or Body Mass Index is a quick and easy way to compare your height to your weight to determine healthy, overweight or obese weight status. The American Institute for Cancer Research (AICR) examined over 400 studies on body weight (BMI) and cancer. Besides not smoking, AICR found the single most important thing you can do to reduce your risk of cancer is being at a healthy weight! The chart below can be used to determine your BMI. If you are a survivor in the Omaha area in need of assistance making positive lifestyle changes, please consider one of our many Harper’s Hope programs, such as Focus on Nutrition or our Physical wellness classes, to assist you with your goal. Please go to www.harpershope.org for more information.
25. Has soy proved to be beneficial or detrimental for breast cancer patients?
Answer: Sorry this is not a “yes” or “no” response as truly, the answer is neither! AICR did a wonderful review of a new analysis study in their October 2008 e-News letter. Please take a look at the below link for the whole article, however; the results are that soy’s possible estrogen-like effects are probably too weak to have any significant consequence on breast tissue in healthy women, even breast cancer survivors. Soy consumed is moderate amounts, which is one or two servings of whole soy foods daily, is probably safe for most women. One serving of soyfoods equals 8 oz. of soymilk, 4 oz. of tofu or tempeh or a half-cup of green soybeans (edamame). Women who are receiving anti-estrogen treatments should stay on the lower end of the range and avoid isoflavone supplements (i.e. pills and powders) if they choose to use soy foods in their diet. The evidence does not support adding soy to your diet to protect against cancer; however, soy foods are still healthy food choices and can still be viewed as one way to make healthier choices for your overall diet. It is important to remember there are no magic foods! Soy foods nor any other single food for that matter has the power to single-handedly prevent cancer or be completely be responsible for causing cancer! Honestly, it all boils down to your overall diet, physical activity and lifestyle choices!
http://www.aicr.org/site/News2?page=NewsArticle&id=14077
26. What healthy snacks would you recommend? Fruits & veggies do not fill me up. I am milk intolerant too & low blood sugar.
Answer: AICR has a great, free brochure available to order or download about snacks! Some topics this booklet addresses is how to snack smart, how to keep portion sizes in check and healthy snack ideas for any type of craving whether crunchy, chewy or sweet! In addition, they do include some bonus recipes! This booklet covers so many topics that I dare say it will have an answer for everyone and I highly recommend it!
http://www.aicr.org/site/PageServer?pagename=pub_homemade_health_sn
|
