Cancer.Net Q&A Forum, December 1-31, 2006:
"Tips to Cope With Cancer Treatment" with
Diane Blum, MSW, CancerCare; Les Gallo-Silver, ACSW, LCSW-R, CancerCare; Susan Leigh, RN, BSN, Cancer Survivorship Consultant, Oncology Nursing Society; and Lidia Schapira, MD, Massachusetts General Hospital

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Diane Blum, MSW, is Executive Director of CancerCare, and Editor-in-Chief of Cancer.Net. Prior to joining CancerCare in 1984, Ms. Blum served as a social work supervisor at Memorial Sloan-Kettering Cancer Center and the Dana-Farber Cancer Institute. Her awards include the Lifetime Achievement Award from the Board of Sponsors of National Breast Cancer Awareness Month, the Special Recognition Award from the National Coalition for Cancer Survivorship, the Republic Bank Breast Cancer Research Foundation Award, and the Special Recognition Award from the American Society of Clinical Oncology (ASCO). She has written and lectured extensively about the psychosocial needs of cancer patients and their families.

Les Gallo-Silver, ACSW, LCSW-R, is the Director of Clinical Programs at CancerCare and received his master's degree in social work from New York University. He was trained at Cornell Medical Center's Human Sexuality Program and has published in the field of the sexual rehabilitation of the person with cancer. He has also worked extensively with children with cancer and their parents, couples affected by cancer, and parents with cancer concerned about their well children.

Susan Leigh, RN, BSN, is a cancer survivorship consultant. She serves as the consumer advocate on the Board of Scientific Counselors at the National Cancer Institute (NCI) and is a member of NCI's Consumer Advocates in Research Related Activities. She was a founding member and past president of the National Coalition for Cancer Survivorship, and she also initiated the formation of both the Nurse Survivors Focus Group and the Survivorship Special Interest Group within the Oncology Nursing Society. Ms. Leigh earned her degree in nursing from the University of Arizona in Tucson. Her current interests include a special emphasis on long-term effects of disease and therapy. Besides surviving Hodgkin's disease, she has also been treated for breast cancer and carcinoma in situ of the bladder.

Lidia Schapira, MD, is a medical oncologist at the Gillette Center for Breast Oncology at the Massachusetts General Hospital and an Assistant Professor of Medicine at Harvard Medical School. She graduated from Dartmouth Medical School and trained at the Beth Israel Hospital and the Brigham and Women's Hospital. Dr. Schapira's interests are in doctor-patient communication, improving access to clinical trials for underserved patients and the psychosocial care of cancer patients.

Question 1: My aunt has just been diagnosed with cancer. What are some ways I can help my mom and my aunt, even though they both live in another state? I want to do something; I am just not sure what that is.

Ms. Blum: It is difficult when you live far away to be helpful on a regular basis.You can talk with your aunt and mother, offering them support and listening to how they are doing with managing the cancer diagnosis. You also might inquire if there are stores that provide food delivery or meal delivery in their area. If there are, you could consider ordering food or meals for them. And, of course, it would be helpful if you plan a visit periodically during which you could assume some responsibility for a few days. Many people who live far away from their family members who are sick express similar concerns. It often helps to express the concern you feel, and ask directly how you can be helpful, giving some specific suggestions as I mentioned above.

Question 2: Any suggestions on family members that try to protect you too much? I'll be finishing up treatment in early December, but just found out that my siblings have decided on all of the family's holiday plans without my input. I complained when my sister told me, but she said they didn't want to burden me with one more thing. (This is just one example!)

Ms. Blum: Family members often try to protect a loved one, thinking that they are doing the right thing. You should be clear with your siblings that you want to be included in decisions as you always have been. You can tell them that if you are not feeling up to participating that you will let them know, but unless they hear that from you, you would like to be part of the family process as you always were. Let them know how you would like to participate specifically, whether it is bringing food, shopping for certain things, or decorating, according to your energy level. There is an article on Cancer.Net called Cancer and the Holidays that may be helpful to you.

Question 3: My husband has been very helpful and supportive taking care of our two young children as I complete chemotherapy and sometimes do not have the energy to take care of them. But he has become easily frustrated and impatient with me. I've tried to discuss this with him, but he says that nothing's wrong. What can I do?

Ms. Blum: Being a caregiver is stressful, and your husband is probably feeling the combined pressures of childcare and worrying about you. It would be helpful to talk to a counselor about this issue, since your husband would probably benefit from hearing that his frustration is understandable, and you could work together to identify ways to manage the needs of your children and home. You can call CancerCare at 800-813-4673 to talk with a professional oncology social worker at no charge.

It also could be helpful if there were other family members or friends who would share some of the responsibility for the children. In many situations, people offer to help in a broad way, and sometimes asking for specific help, such as picking the children up or preparing a meal, helps other people who want to assist but are not sure how to do so. This would help with some of the practical needs and perhaps give you and your husband time to talk about the tensions and frustrations created by your treatment demands.

Question 4: One of my coworkers is coming back to work after being out for about six months for treatment. Is it too much to give him a "welcome back" party? We all want to celebrate his return, but the staff is split on whether to be more low key about it.

Ms. Blum: It would be best if you asked your coworker directly if he would like a welcome back party. That the staff is being split is not surprising, since some people who had been on medical leave would enjoy a party, and others would want to come back to work in a more low-key way. Your coworker will be pleased that you are all so happy to have him back, and probably will tell you what kind of welcome he is most comfortable with. Sometimes when people don't want a party, they are pleased to have cards and notes waiting for them.

Question 5: My close friend has an 11-year-old son who has been fighting leukemia for a couple of years now. She and her husband spend all of their time (understandably) caring for the sick child and are emotionally, financially, and physically spent. Our families frequently spend time together and I've noticed that her other two children (one older, one younger) are showing warning signs of needing attention. What can I do?

Ms. Blum: You can offer to spend time with her children and include them in your family activities, saying that it would make your family feel good to be able to help out.

There are experts in helping families manage cancer when a child is being treated for the disease. You could refer them to CancerCare, 800-813-4763 or www.cancercare.org, where there are social workers who specialize in this area and provide free service. Your recommendation can be that you heard about this organization that helps many families and thought it might be helpful in a general way. You don’t need to say to them that you think the children need attention, but rather, that doing all they do must be hard, and that you know of services that can help.

Question 6: I was diagnosed with cancer a few months ago, and one of my best friends has not been in touch with me since she heard about my diagnosis. This has really upset me but I'm not sure what to say to her. Do you have any suggestions?

Ms. Blum: Your friend probably doesn't know what to say to you and is not calling because of her own discomfort. You could reach out to her, saying you are getting treatment now and miss your contact with her. You could do this by email if you're not comfortable talking to her directly, although a phone call would be fine, too. It is upsetting to people when friends withdraw. CancerCare has a fact sheet called What to Say to a Newly Diagnosed Loved One. There is another excellent article on Cancer.Net on Talking to Someone With Cancer. Many people have told us that these fact sheets have been helpful to them because they are unsure of how to talk and how to help.

Question 7: I would like to find a counselor or therapist to talk with about some issues that have surfaced since I finished my cancer treatment, such as fear of recurrence, low self-esteem, and anxiety when making decisions. How can I find someone who specializes in cancer-related issues?

Ms. Blum: There are several resources for you. First, you could ask your physician if he or she recommends anyone in your community. You can also call CancerCare at 800-813-4673 where you will talk with a professionally trained oncology social worker. You can also call the American Psychosocial Oncology Society (APOS) at 866-276-7443; this is a society of mental health professionals who work in oncology, and they offer a referral service for counseling. Having concern about the issues you identify is understandable, and it can be helpful to talk with a professional about your feelings and ways to manage them.

Question 1: I'm 39 and had a hysterectomy about 18 months ago. Since then, I've had plenty of sexual problems: pain, dryness, and total lack of interest. Is there anything out there to try besides hormone replacement therapy (HRT)?

Dr. Schapira: I assume that you also had your ovaries removed, and the symptoms you describe are a result of an early menopause. Vaginal dryness and sometimes itching are quite common and are a result of lack of estrogen; pain with intercourse is unfortunately another frequent complication. Not surprisingly, many women can lose interest in sex following this surgery. Sometimes, lack of desire or interest in sex is caused by feeling low or depressed or from body image changes following cancer treatment. Some women find relief using lubricants such as Astroglide or Replens, while others try a variety of natural lubricants. If these don't work, a short course of vaginal estrogen can be prescribed to help replenish the vaginal tissues – once you obtain relief, then you can taper off. I encourage you to discuss these concerns with your doctor or nurse practitioner and try a few different things until you find relief.

Question 2: Is there any magic advice on how to respond to really personal questions? I've had two people ask me "how long I had" to live. I was speechless.

Dr. Schapira: You raise a very touchy subject and one for which there is no single answer. My sincere advice is to stay in control of how much information you choose to divulge. People are often tactless – so stay calm and find a way to deal with some of your irksome colleagues or acquaintances. Imagine you are your own "press secretary" and practice quick and easy phrases you can use to stop these inquiries. If you are stuck, then confide in one friend or relative and have him or her help you manage just how much information to give to all the well-wishers or those who are simply curious.

Question 3: My local breast cancer support group members are really nice, but I don't have much in common with them due to my age (I'm 31). Is "a little support" better than stopping going?

Dr. Schapira: I think a little support is much better than none at all and that you are the most qualified person to decide just how much is enough. You may try to find a support group designed specifically for young breast cancer patients and survivors; try looking at web-based resources and visit the websites for the different advocacy groups that deal specifically with the needs of young survivors. A patient of mine told me a similar story and she found a great web-based group.

Question 4: I think my daughter is getting teased at school because of her hair loss, but she won't talk to me about it. (I'm adding up a few passing remarks her friends have made in my presence and my gut feeling.) Unfortunately, she switches teachers all day long in junior high, so there's no one person to check in with at school. How can I get her to open up to me? And then, how do I help her get through this?

Dr. Schapira: I assume your daughter is an adolescent who is undergoing treatment for cancer. If that is the case, I think the best place to start is by talking to her doctor and nurse and asking for advice. Most cancer centers that treat adolescents have mental health experts and a wealth of 'good advice' for dealing with the consequences of cancer treatment.

It is important to remember that adolescents are busy trying to figure out how to separate from their moms at this age, so she may not be ready to open up and express all her concerns. Be patient and creative. The best times to deal with sensitive topics may be when you are driving or working side-by-side in the kitchen or the yard. Let her know that it's ok to talk about any and all concerns and that, while you may not have all the answers, you are steadfast in your support.

Question 5: How do I tell the difference between depression and just tiredness caused by the chemotherapy? My husband is extremely lethargic, and he's become kind of a shell of himself.

Dr. Schapira: You raise an excellent question, one which can be difficult to sort out even for trained professionals. The cardinal symptoms of depression – such as fatigue, lethargy, lack of appetite, changes in sleep, and weight loss – are also common side-effects from chemotherapy. However, if your husband's mood appears to be down, he seems to have lost interest in activities which once gave him pleasure, or if he is withdrawn, then I agree you must worry he is also depressed. The best way to figure this out is to ask him: "are you depressed?" and then help him ask for help from his medical team. Depression can be treated!

Question 6: I have trouble communicating with my doctor because I feel uncomfortable around him. I feel as if I am wasting his time with my questions. What can I do to help ease my discomfort?

Dr. Schapira: There are a few things you can do to improve or facilitate communication. The first step is to make a 'diagnosis' of what is going wrong in your dynamic with your physician. You need to figure out why you are uncomfortable around him. Does he dominate the conversation? Does he seem inattentive? Does he give you the impression that you are not important? Once you get a better feeling for exactly what is not working, you can try to figure out a way to improve your relationship. Prepare your questions in advance and give the doctor a 'warning shot' at the beginning of the visit, telling him that you need to have your questions answered. Some physicians appreciate having the questions mailed, faxed, or e-mailed in advance of the visit. Organize your questions so you don't ask the same ones at each visit, and make sure you know which ones are most important to you. Another practical tip is to talk to the nurse or medical assistant, letting he or she know that you have important questions or concerns that need to be addressed.

Question 1: My mother was just diagnosed with lung cancer. Even though my sisters and I are adults, she's the glue the holds our family together. How can the rest of us pick up the slack and support her in her time of need?

Mr. Gallo-Silver: A mother who is the "glue" of a family wants her children to enjoy each other's company, socialize with each other, and be involved with each other's lives. As it is the holiday season, your mother may not feel up to being the hostess, cook, and organizer of the family events that bring all of her children together. But she will most likely still want to direct and supervise these activities. I suggest that you and your sisters present yourselves as your mother's willing "staff" to carry out her plans for this season's family gathering.

If there are other things your mother needs, such as grocery shopping, house cleaning, transportation to doctor visits, and any number of other daily tasks she might not feel up to, I suggest a slightly different approach. Rather than ask and offer, I would suggest saying: "Mom, when I visit with you tomorrow, I will use part of the time to clean the bathroom", which is different than saying, "Can I clean up the bathroom for you?" or "Do you need help cleaning up the bathroom?" If she refuses your willingness to clean, don't argue. In terms of grocery shopping, you most likely know what your mother likes, so why not just bring some things with you? The worse that could happen is she insists you take it back with you.

Many adult children caregivers find joining a support group beneficial as a way to share helpful hints with each other. Support groups for adult children caregivers focus on how to communicate concern to their parents with cancer and provide them with the practical support while respecting their parent's independence and privacy. CancerCare offers numerous types of professionally facilitated support groups online and on the telephone for caregivers. You can contact CancerCare online at www.cancercare.org or on the telephone at 800-813-4673.

Question 2: After a lumpectomy, radiation therapy, and tamoxifen, I am having some serious body issues and it is affecting my relationship with my fiancé. I haven't slept with him yet because I'm embarrassed about how my chest looks (scarred and wrinkled), how my body will react before and during sex, and everything else one could possibly worry about. Do you have any advice?

Mr. Gallo-Silver: It is very important that you become comfortable and better acquainted with your changed body before you are physically intimate with your fiancé. Your question makes it clear how you feel about your affected breast. What is not clear is how you feel about the rest of your body. Remember that most of your body has not been affected by cancer. As you look in the mirror ask yourself what you think of your eyes, your shoulders, your legs, hips, and other parts of your body? What parts of you do you still like? 

Some women consider reconstructive surgery to improve the look of the affected breast. While you may have made love in the nude before breast cancer, many women after breast cancer feel more comfortable making love partially clothed. Partners of women with breast cancer may also prefer this over them being nude. This is not because of their thoughts or reactions to the affected breast, but because it is easier for the partner to avoid touching, rubbing or leaning against a sensitive area of their partner's body, as the clothes are a reminder of this. Many beautiful and sensual garments, sleepwear, and night shirts are available that can be worn over your bra that might please you and your partner.

In terms of how your body will react, I think it is always helpful to start from the beginning. By that, I mean start by holding hands, then kissing, hugging, and caressing. Caressing should focus on areas of your body that are comfortable for you. Some women like a foot massage as a starting point. Do this gradually, and determine what feels good, comfortable, and pleasurable to you. Your doctor, nurse, or social worker can suggest a variety of education materials that will give you more specific information on how to resume sexual activity. The American Cancer Society has an excellent education booklet on sexuality and you can obtain that through their website at www.cancer.org. In addition, CancerCare offers free professional individual counseling on the telephone and at 800-813-4673.

Question 3: My children are still fairly young (12 and 14), and I'm about halfway through treatment. We try to talk to them about what is going on, but they have become a little withdrawn lately. How can my wife and I get them to understand that I'm still the same person?

Mr. Gallo-Silver: While it is understandable that as a loving parent you are concerned about your children, why would no discernable response to your situation be preferable, helpful, or even healthy? My opinion is that it would not be. As a parent, you make every effort to teach your children to care for and respect other people. It would be only natural for them to show some type of concern, worry, or sadness about the fact that you are being treated for cancer.

The best way to give your children reassurance is not with words, but with actions. If you have the energy, perhaps you can return to some of the fun things the family shared together. If these things are a bit too strenuous for now, perhaps there are other age-appropriate ways you can play with your children. Children, no matter how loving and sensitive, always need to focus on themselves; it is a part of how children grow emotionally. Your children want to know that you are there for them and you may identify many ways to show them that they can still "count" on you. Instead of trying to prove to them that you are the same person, perhaps it makes sense for you to accept that perhaps that is not the case. Cancer is a life-changing event for you and for the family. You may indeed see your life differently, value things in a different way, and even react to things differently. Your children may be more aware of these changes than you are. Perhaps these may actually be helpful changes. It may be helpful to reflect on the ways you may have changed and this might be a good topic for a different type of discussion with your children. CancerCare offers a unique service of professional consultation for parents with cancer through the CancerCare for Kids Program. You can contact CancerCare at 800-813-4673.

Question 4: My 19-year-old son successfully completed treatment recently for testicular cancer. His doctor tells him he is healthy now, but since he was diagnosed, he has been very negative/apathetic about his health. He has lost interest in activities he once found fun, such as hanging out with his friends and playing sports. What can I do to support him?

Mr. Gallo-Silver: It is wonderful news that his doctor tells him he is healthy, but the loss of his affected testicle still needs to be mourned. The loss of a body part is similar to the loss of a loved one, and people need to go through a grieving process. Your son may feel he has been mutilated by the surgery that removed his affected testicle. His scrotum, the sac of skin that holds the testes, now looks different, and some men feel less manly or emasculated by this change in appearance. He may have also lost weight and muscle mass due to his treatment. In addition, chemotherapy can sometimes cause a lingering fatigue, which is a mixture of a loss of physical energy and stamina.

All of these things may have caused him to develop symptoms of depression. It may be difficult for you to think that your son might have an additional medical problem that needs treatment, but depression is such a problem. However, no one can diagnose depression from a few descriptive sentences. I believe your son needs to be evaluated to determine what kind of help he needs now. He may or may not need medication at this time, but given his experiences with his testicular cancer and the reactions he has had, I believe he could benefit from psychotherapy. Your son's doctor would be a good first step in the process of finding resources in your community as would an oncology nurse or social worker. In addition, the American Psychosocial Oncology Society (APOS) Helpline can help you find a mental health professional in your community that specializes in helping people with cancer. You can reach them at 866-276-7443.

Question 5: My wife has kidney cancer and has had a rough time. But, sometimes it feels like she vents all of her anger at me. For instance, our last hospital visit took all afternoon due to office delays, and I know she was frustrated. She said she was fine while we were there, but on the way home, she started screaming at me for the way I drive. I’ve tried to talk to her about this, but she doesn't see it.

Mr. Gallo-Silver:   My first comment is very important. Please do not drive when your wife is screaming at you. Please pull over and park the car; if you are on a highway, please turn off the highway at the next exit. This is a potentially dangerous situation. Your wife does not mean for this to be a dangerous situation, and you pulling over or leaving the highway will most likely make her yell more; but it is really the safest response to make. You can continue driving when the yelling has stopped. Your wife's feelings are important and you both know it is not about your driving (and being yelled at has never improved anyone's driving). So, if she is so upset that she needs to yell, then you need to stop driving, and the two of you need to talk. That will be the most direct and clearest message that none of this has to do with your driving.

That said, it is possible that you are also upset, angry and frustrated. It is important for you to consider if some of your own frustration is being demonstrated by being a bit overly aggressive on the road. This has been known to happen.

Both you and your wife were aware that she was not fine with all of the delays at the doctor's office. She was upset, frustrated, angry, sad, and most likely had many other feelings. There was no way to avoid her yelling at you in that moment. The work that the two of you need to do is before these moments occur. My guess is she may generally not feel heard. Not necessarily by you in particular, but most certainly not by her doctors. She needs your help in developing a strategy to manage her stress and tension when things get messed up and delays happen. Maybe it is music, or a book, or a walk, or a ball she squeezes; the solution may need some creative thinking. Many people with cancer learn relaxation techniques to manage these types of situations. The two of you might benefit from learning different ways of communicating. One of these ways is called the "speaker-listener technique" which has been very helpful to other couples affected by cancer. The American Psychosocial Oncology Society (APOS) Helpline can help you find a mental health professional in your community that specializes in helping people with cancer. They would be able to identify those professionals who could teach your wife relaxation techniques and a therapist who is knowledgeable about the "speaker-listener" technique and other ways to help couples improve communication. You can reach them at 866-276-7443. Also, CancerCare has a varied education library for people affected by cancer, and its fact sheet "Doctor Can We Talk" and other information on communication might be very helpful. You can obtain this fact sheet ot other education materials from www.cancercare.org or by calling 800-813-4673.

Question 6: My father recently found out he has advanced prostate cancer and is undergoing treatment. We live far away, so I try to keep in touch with him by phone. Whenever I ask how his treatment is going, he tells me not to worry and says that his cancer is "no big deal." As a grown adult, I feel I'm old enough for my dad to be open with me. What can I do to let him know he can be truthful with me about his health?

Mr. Gallo-Silver: Being a long distance caregiver is very difficult. It can be hard to determine such things as knowing when to visit, when to get involved, what is an emergency, what to anticipate, and how to be useful. My suggestion is to change the discourse with your father entirely. The discussion needs to be about your concerns about living far away, the fact that you feel bad about this, and that you are actually quite worried about him. My educated guess is that if you are open with him, perhaps he will be more open with you. If not, then I suggest you plan a visit that does not coincide with a medical emergency, holiday, or a large family gathering. It should be just you and your father in order to give you both an opportunity to talk things through face to face about how difficult it is for you knowing that he has an advanced prostate cancer and living so very far away from him. Yes, it sounds a lot like the telephone conversation, doesn't it? However, sometimes when a parent sees the emotion in their child's face and in eyes, they get it. It is fine for your father to have his independence, privacy, and his pride, but since he also decided to be a good parent and raise a child that cares about him, he has to let you share this experience with him. CancerCare offers a unique individual telephone counseling program provided free by professional oncology social workers. In addition CancerCare offers online support groups that are particularly helpful to long distance caregivers. You can reach CancerCare online at www.cancercare.org or at 800-813-4673.

Question 1: My boyfriend of almost two years just broke up with me, and I can't seem to get past it. I'm crying more than I ever did, even when I was diagnosed and during the relapse. What is wrong with me? Before I had cancer, I seemed to take things more in stride.

Ms. Leigh: Since I have limited information about your situation, I am assuming that you are a young woman; if this is not the case, I apologize for the incorrect judgment. But your situation brings back vivid memories of how I felt personally as a young survivor many years ago.

Obviously, your life has changed dramatically, and few people – with the possible exception of other cancer survivors – can truly understand your losses. Crying is certainly not unusual in this circumstance, but you may need some help to discover just what is happening and why.

I hope you have access to a caring and knowledgeable healthcare provider. You first need a thorough evaluation and accurate diagnosis, so that appropriate treatment can be offered. If you are depressed, there could be medical and/or psychological reasons contributing to your distress. This assessment should first rule out any medical problems, such as hormonal imbalances that might signal hormone deficiencies or premature menopause, or unusual fatigue that may be from chronic low blood counts, sleeping problems, or thyroid disorders.

In addition, your physician may refer you to a counselor or therapist who is familiar with cancer survivors and their issues. Most depression in survivors is situational, meaning that you are reacting normally to a traumatic experience. It becomes a problem when you are unable to find joy in life, withdraw socially, think of suicide, and you don't get the help that is needed to overcome these feelings. So, an accurate assessment is vitally important so that you get the right kind of treatment.

This may also be a good time to seek out fellow survivors, not only to talk about feelings of depression but to also discuss related issues such as dating, relationships, self-esteem, loss, grief, and the "new normal." This can be done either through one-to-one contact, online or in-person support groups, or camps and retreats. It might be particularly helpful to look for support or networks where the participants are in a similar age group as you.

Some online resources include: CancerCare (www.cancercare.org) where you can talk directly to a social worker; Planet Cancer (www.planetcancer.org ), an interactive website for young adult cancer survivors; the Lance Armstrong Foundation (www.livestrong.org) that has information about life after treatment ends; and the Association of Cancer Online Resources (www.acor.org), which includes information specifically for long-term survivors.

Helpful books include: After Cancer: A Guide to Your New Life by Wendy Harpham, MD; Childhood Cancer Survivors by Nancy Keene, Wendy Hobbie & Kathy Ruccione; and Cancervive: The Challenge of Life After Cancer by Susan Nessim.

Question 2: I spent most of my teenage years in and out of hospitals being treated for a rare type of cancer. I am now 23 and have been cancer-free for four years. Part of me feels like I've had enough life experience to be 40 and part of me feels cheated out of my high school prom, senior week, homecoming, etc. I'm not sure how to deal with this. Thanks.

Ms. Leigh: Oh, how I relate to your question. I was 24 when I was first treated for Hodgkin's disease, and that was 35 years ago! I still so vividly remember my perceived disconnect as to how I related – or could not relate – to my peers. Here is an excerpt from a book chapter that I wrote a number of years ago:

"My physical recovery took over a year once treatment stopped… But my emotional recovery was an ongoing process. Days of sheer joy were interspersed with days of depression. As my priorities had so drastically changed, it was often difficult to relate to my old friends or feel comfortable socially with new ones. At times I felt old beyond my years, yet there was also a childlike feeling of wonderment and exhilaration for every new day. Life was miraculous, but often very confusing." (From Building A Legacy: Voices of Oncology Nurses, 1995).

I must admit that I never really felt understood until I met other survivors. It was such a breath of fresh air to be a founding member of the National Coalition for Cancer Survivorship back in 1986, as it was the first time that I was in a room of fellow survivors and healthcare providers who all recognized and valued the issues, both positive and negative, of life beyond cancer. 

So, what can you do about it? Most of your peers will never catch up with your life experiences. And you probably can't expect them to understand what you went through. But that doesn't mean you can't teach others about cancer and its consequences. You can get involved with support networks or cancer organizations within your community. You can talk to medical students about what it is like to be a patient with cancer at such a young age. You could attend a retreat or camp for young adults who have had cancer and meet others who are dealing with similar issues. Or you could join or start a young adult support group. Use your wealth of experience and knowledge to help other young survivors, and make a difference as only you can do.

The book Nordie's at Noon may also be helpful to you, in addition to the other resources I've mentioned.

Question 3: I'm a 6-year survivor of breast cancer, but I still find myself checking my breast for lumps almost every morning when I wake up. How can I get over this?

Ms. Leigh: Checking your breasts for lumps every morning is not necessarily bad. I suspect, though, that you are concerned about the chronic anxiety that leads to you to these checks. This anxiety is not unusual for cancer survivors, but it can be draining, both physically and emotionally. You probably just don't feel safe yet that the cancer will not return or confident that you will be able to identify an early sign of recurrence. You may also feel that all this cancer anxiety should be over, since it has been so many years since you finished treatment. So finding someone you trust to help you confirm the source of your anxiety and better understand what is happening will be a helpful first step. This might be a trusted healthcare provider, a professional counselor, an understanding friend, or another survivor.

In After Cancer: A Guide to Your New Life, Dr. Wendy Harpham, herself a cancer survivor, offers advice to diminish anxiety. Some of her suggestions include:

• Avoid stimulants, such as caffeine or decongestants
• 
  
  
• Gather information to help reduce risk of recurrence or be able to identify early recurrence
• 
  
  
• Learn self-relaxation techniques
• 
  
  
• Get adequate sleep and exercise
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• Pray if this is a form of comfort and support for you
• 
  
  
• Join a support group in order to share practical ideas about relieving anxiety
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• Find a professional counselor to work with you individually

Susan Nessim adds other suggestions in her book, Cancervive. Some of her suggestions include: keep a journal and explore your thoughts on paper; learn visualization techniques; and try hypnotherapy.

And, realize that each one of us deals with life after cancer on our own schedule. Remember that time can help heal, and it may take a bit longer to recover than you expected. I would suggest the same online and print resources that I listed in my answer to Question 1 above, to help you find assistance.

Question 4: I've been cancer-free for seven years. I don't think about it too often, but recently I was watching a movie where someone dies of cancer (which I didn't know when we rented it). I actually had to excuse myself to get composed in the bathroom. It was really surprising to me how strongly I reacted. Is this normal?

Ms. Leigh: Yes, this is quite normal for many cancer survivors, including myself. It can happen during movies, TV shows, commercials, weddings, birthdays, anniversaries, holidays, medical appointments, and other times. Triggers, defined as anything such as an act or event that initiates or precipitates a reaction or series of reactions, can suddenly remind us of past traumas and allow old fears or sadness to burst to the surface. In The Human Side of Cancer: Living with Hope, Coping with Uncertainty, Dr. Jimmie Holland refers to these fears as "gremlins" that appear after cancer, may never completely go away, and will rear their ugly heads at both expected and unexpected times. Expected times are usually the days or weeks around scheduled follow-up visits and diagnostic tests. Many survivors feel knots in their stomach, can't sleep, or are irritable before these check-ups. Or, they become anxious when the anniversary of their original diagnosis approaches. Unexpected times for these feelings to emerge can be just like your situation, when watching a movie or TV show and one of the characters is found to have cancer. Since we rarely see anyone do well in these stories, our fears can be magnified. 

In After Cancer: A Guide to Your New Life, Dr. Wendy Harpham categorizes these feelings as check-up anxieties, holiday anxieties and anniversary reactions. While most of us learn to adapt to these triggers through trial and error methods, Dr. Harpham offers a number of general and specific suggestions as to how to deal with them. Her general suggestions include adapting our ways of thinking, such as:

• Checkups offer opportunities to confirm that you are doing well, to stay well, and to celebrate your life.
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• Expect strong emotions on holidays. Let every holiday be a celebration of your life and what you do have.
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• See anniversaries as opportunities to reinforce good feelings about your life.

Triggers remind us of our own mortality. Each of us deals with our fears of dying or ideas about death in very individual ways. Reactions to these circumstances can be reminders that we still have personal work to do, and our challenge is to decide if we can do it alone or seek help from others. I encourage you to seek out the books and other resources I've referenced.

Question 5: I am feeling very fatigued lately, but I am used to getting up and exercising in the morning. How can I get over this feeling and get back to my normal routine?

Ms. Leigh: I wish I knew if you are still receiving treatment for cancer, or if you have completed therapies and for how long. But I suspect that you are trying to recover from chemotherapy, radiation therapy, or a combination of both, so I will start with fatigue during therapy, but concentrate on lingering fatigue after cancer treatment ends.

Fatigue is the most common side effect of cancer treatment, even more prevalent than pain and nausea. One estimate states that 90% of all people treated for cancer are affected by fatigue at some point, and it does not necessarily go away once treatment ends. Our bodies are under siege during treatment (surgery, invasive diagnostic tests, chemotherapy, radiation, and sometimes biotherapy) and then there are the tremendous amounts of anxiety and emotional strain, all of which combine to take their toll. Generally, fatigue may be worse and have a longer recovery time with more complex or difficult therapies, such as bone marrow transplants; with combination therapies like chemotherapy followed by radiation therapy; or with repeated or extended treatment.

Dr. Wendy Harpham addresses the issue of fatigue in After Cancer: A Guide to Your New Life, in a chapter entitled Aftereffects of Cancer, calling fatigue an "invisible wound," and listing a number of other reasons for possible fatigue. Some of these reasons include: medications (for pain, insomnia, blood pressure, depression); anemia (low red blood cell count) from cancer treatment; chemical imbalances from cancer treatment; hormonal changes (premature menopause, hypothyroidism); damaged tissue or organs from cancer treatment; pulmonary (breathing) difficulties; infection; emotional factors such as depression, anxiety; malnutrition; sleep disorders; deconditioning from inadequate exercise or from overexertion; and caffeine, alcohol, or nicotine intake.

The extent of this list enforces the need for a thorough physical and psychological assessment to pinpoint why you are feeling fatigued. Components of this examination may include blood tests, x-rays, or other diagnostic tests; examining your medical history, including cancer and all other diseases; identifying lingering or late effects of therapy; and exploring patterns of exercise, eating, and sleeping. It should also look at the medications you are taking, including all supplements; events that change your level of fatigue; and your psychological health at that moment in time. This will hopefully provide the doctor and yourself with the information needed to identify the possible reasons for the fatigue, and then develop an action plan.

Scientific evidence now supports including exercise into both cancer treatment and recovery plans. While athletes like Scott Hamilton and Lance Armstrong have raised awareness about the importance of exercise, cancer researchers are now discovering the evidence to support physical activity as a component of cancer care. Dr. Anna Schwartz, herself a cancer survivor, has written a book entitled Cancer Fitness: Exercise Programs for Patients and Survivors that can offer safe plans to increase fitness levels no matter what the starting physical state. Besides help with developing individualized exercise plans, she also includes information about diet, symptom management, and goal setting. And, all her work is based on sound scientific principles.

Another good exercise book is The Spirited Walker: Fitness Walking for Clarity, Balance, and Spiritual Connection by Carolyn Scott Kortge, who is a cancer survivor who has refined her original walking program to suit the needs of people with cancer or the after effects of cancer. She describes different types of walks for different levels of walkers. Imagery, breathwork and affirmations are part of her program.

I hope these resources can help you get back to feeling more energetic. One caution, though, is that some survivors never fully regain their original energy levels. But you may also develop habits that could help you become better conditioned than ever before.

Question 6: I am a cancer survivor and have started dating again, but feel like I don't have much in common with the people I meet. Are there any dating services or online networks specifically geared for cancer survivors?

Ms. Leigh: Dating is difficult enough under the best of circumstances. Having had cancer can magnify the challenges of developing both friendships and intimate relationships. So much depends upon where a person is developmentally, including prior self-image and current feelings of self-worth, the real or perceived changes in physical appearance, and emotional scars that reflect how we see ourselves. It also depends upon the type of people we meet, the social situations that we put ourselves in, and the support networks that surround us. This was one of the hardest parts of my own recovery when I was in my mid to late 20's and into my 30's as I viewed myself as "damaged goods" -- due to my scars, my inability to bear children due to treatment, and an unknown future that could include getting sick again. And, some of my peers even thought I might be contagious! So I found it easier to be alone much of the time, but social isolation surely isn't the answer.

An issue of major concern for survivors who are ready to date again is that of disclosure: when do you tell your date that you have had cancer? Over the years, I have found two basic reactions to this dilemma. The first is to tell the date right away, so you feel that no time is wasted if the other person can't handle your cancer history, and thus no emotional investment is made. The other reaction is to take your time and see if there might be potential for a relationship. In Cancervive: The Challenges of Life After Cancer, Susan Nessim feels that the "first strike" approach is a way of protecting yourself, testing the other person, or a combination of both. The "waiting" approach will most likely be less threatening to your date, offer a better chance to establish trust and feel affection, but may feel dishonest at times. The timing of disclosure will probably be very individual and different in different circumstances.

Involvement in cancer support groups or advocacy programs increases your chance to meet people who understand you and your medical history. Start by seeking out survivors who are close to home. Then, if you discover you need something that is not available in your community, use your expertise and try to start something. If your community is large enough, a dating service for cancer survivors may not be out of the question. Your creativity and imagination could help you discover a great source of dates!

In addition to the resources listed above, these websites may be useful: The Ulman Fund (www.ulmanfund.org), the National Coalition for Cancer Survivorship (www.canceradvocacy.org ), The Wellness Community (www.thewellnesscommunity.org ), and the Young Survival Coalition (www.youngsurvival.org ).

Question 1: My husband has lost almost 30 pounds since he started treatment for esophageal cancer. Where can I find tips on how to get him to take more food and fluids to gain weight? Where can I find ideas for meals to fix for him to help him gain some weight?

Ms. Blum: First, I would recommend speaking with your husband's physician and nurse to learn their recommendations. They may work with a nutritionist who could talk with you about meals that would appeal to your husband. Cancer.Net's information on appetite Loss may be helpful to you. The National Cancer Institute also has some recipe recommendations. Lastly, it's often frustrating for family members when they watch a loved one losing weight and not wanting to eat. As you look for recipes and advice from professionals, talk to your husband about what would appeal to him and when he feels most like eating.

Question 2: My husband is currently being treated for cancer. The doctor hasn't told us it is terminal and my husband hasn't asked. Should I be asking the "hard" questions, or should it be my husband's choice? He seems so oblivious to the whole situation that I think I may not be able to remain hopeful and positive for him if I know something he doesn't.

Ms. Blum: Your husband is dealing with his cancer diagnosis by being hopeful and positive. I would ask if that is what the physician is presenting to both of you, or whether you are hearing information that seems more negative to you. You do not want to talk with the physician about your husband's prognosis without him being involved in the discussion, so if you are hearing more negative messages, you can consider asking your husband what he is hearing after a medical appointment.

You might also initiate a discussion with the physician about treatment options that would be available if the current treatment is not as successful as hoped. That would be a way to have a discussion about the future without taking on the issue of the long-term prognosis. There is much more hope in cancer today than there was a decade ago, and your husband may have a very good chance of doing well.

Question 3: Are there any organizations or websites that could help with financial concerns, such as assistance resources?

Ms. Blum: CancerCare, a national non-profit organization, provides financial assistance for transportation, child care, and home care to families that meet certain financial criteria. Social workers at CancerCare are also experts in referring you to other possible sources of financial assistance. You can contact CancerCare at 800-813-HOPE (800-413-4673) or at www.cancercare.org.

Question 4: Could you please list the locations and contact people for current centers that have clinics for adult long-term survivors, particularly those clinics that are open to survivors who were not originally treated at that center? I am having some horrible, multiple medical problems that are affecting my quality of life very severely since breast cancer treatment ended in 2003. I have repeatedly tried to get help in my local area.

Ms. Blum: There are many survivorship clinics at major medical centers throughout the country. The National Coalition for Cancer Survivorship (NCCS) has a list of long-term survival clinics. It includes institutions such as Memorial Sloan-Kettering, University of Pennsylvania, UCLA, Vanderbilt, and M. D. Anderson, all of which have clinics that focus on post-treatment issues that you are identifying. You should definitely seek help, since many of these problems have been recognized and there are recommendations for managing them.