Fukushima Children Tested for Thyroid Cancer Risk

Experts Urge Cancer Survivorship Research Must Look at Quality of Life

Assessing the quality of life experienced by cancer survivors is becoming increasingly important, say researchers at Moffitt Cancer Center in Tampa, Fla. Such an assessment has a number of important applications when doing research on cancer survivorship, but just how to measure quality of life for cancer survivors is still being developed.

Asessment of quality of life in cancer patients can be tailored through the use of measures specific to a particular disease, treatment, or end point on the cancer continuum," said study authors Paul B. Jacobsen, Ph.D., and Heather S. Jim, Ph.D., of Moffitt's Department of Health Outcomes and Behavior. They published their conclusions in a recent issue of Cancer Epidemiology, Biomarkers and Prevention.

The authors identify strategies and priorities for quality of life research with cancer survivors. For example, observational studies can generate data on the nature and extent of problems experienced by cancer survivors in relation to their type of disease and treatment received, as well as the time elapsed since treatment was completed.

"This information can be used to inform patients of the expected consequences of specific treatments and to help identify their rehabilitative needs," said Jacobsen. "Similarly, the outcomes of clinical trials that include quality of life as an endpoint in studies can be useful in identifying which treatments yield the best quality of life for cancer survivors."

In addition, quality of life assessments can be used to evaluate the quality of care patients received. "Quality of life is a multidimensional construct about functioning -- from physical to social -- and is most often assessed by self report, either by interview or questionnaire," noted Jim. "However, some research suggests that patients may be less likely to report poor quality of life in response to an interview as compared to a questionnaire."

In total, the authors evaluate almost 20 commonly used measures of quality of life for cancer patents and cancer survivors. For example, the authors discuss the Quality of Life in Adult Cancer Survivors (QLACS) measure that is driven, in part, by the view that existing cancer-specific measures were designed primarily to capture the effects of diagnosis and treatment.

"These measures may not adequately assess problems that can persist long after treatment, such as pain, fatigue, cognitive difficulties, sexual difficulties and body image concerns," said Jim. Greater consistency in quality of life measurement may be found in the Patient-Reported Outcomes Measurement Information System (PROMIS) initiative, the authors report. The initiative is designed to develop, validate and standardize item banks for measurement of patient-reported outcomes for a wide range of conditions, including cancer.

According to Jacobsen and Jim, too many studies are based on "convenience sampling" at a single recruitment site, and these studies often suffer from the limitation of being too small. "There is a need for research based on larger cohorts of cancer survivors recruited from multiple sites, or by using population-based recruitment strategies," said Jacobsen.

The authors conclude by noting the "marked increase" in publications on quality of life for cancer survivors in recent years, suggesting widespread recognition of the value of such research. "However, for the field to continue to progress, important issues still need to be addressed," said Jacobsen. "Most important among these is how quality of life is to be measured, in whom it is measured, and what uses are made of quality of life data."

SOURCE: ScienceDaily Press Release (Oct. 28, 2011)

Helping Your Friends Help You During Your Cancer Treatment

Do not protect yourself by a fence, but rather by your friends. --Czech Proverb

Once friends learn of your cancer, they may begin to worry. Some will ask you to tell them ways to help. Others will wonder how they can help but may not know how to ask. You can help your friends cope with the news by letting them help you in some way. 


Think about the things your friends do well and don't mind doing. Make a list of things you think you might need. This way, when they ask you how they can be of help, you'll be able to share your list of needs and allow them to pick something they're willing to do.


Sample list of need:

• Baby-sit on days that I go to treatment.
• Prepare frozen meals for my "down days."
• Put my name on the prayer list at my place of worship.
• Bring me a few books from the library when you go.
• Visit for tea or coffee when you can.
• Let others know that it is alright to call or visit me (or let others know that I'm not ready for visitors just yet).

Family Matters: Talking to Your Elderly Parent About Your Cancer

Since people are living much longer these days, many people with cancer may also be caring for their aging parents. For example, you may help your parents with their shopping or take them to doctor. Your aging parents may even live with you.

You have to decide how much to tell your parents about your cancer. Your decision may depend on how well your parents can understand and cope with the news. If your parents are in good health, think about talking with them about your disease.

Now that you have cancer, you may need extra help caring for your parents. You may need help only while you are in treatment. Or you may need to make long-term changes in your parents' care. Talk with your family members, friends, health professionals, and community agencies to see how they can help.



Summing Up: Cancer and Your Family

Cancer will not only change your life, but also the lives of those around you. It impacts families and friends in different ways. Talking about cancer can be hard for some families. Routines of family life may change. Roles and duties within the family will change. Relationships can be both strained and strengthened. Dealing with money and insurance often become hard. You may need to change where you live and with whom, at least for a while. As you think about how cancer has changed your life and your family's life, think about reaching outside your family to get help. You may need help with household chores and errands. Respite care can give your regular caregivers a much-needed break. Counseling and support groups can help your family deal with the issues that cancer raises. Most families find that being honest and open about the cancer, about the problems that arise, and about their feelings, helps them handle the changes that cancer causes.

Family Matters: Talking To Adult Children About Cancer

Your relationship with your adult children may change now that you have cancer. You may:

• Ask them to take on new duties, such as making health care decisions, paying bills, or taking care of the house.
• Ask them to explain some of the information you've received from your doctor or to go with you to doctor's visits so they can also hear what the doctors are telling you.
• 
  
• Rely on them for emotional support. For instance, you may ask them to act as "go-betweens" with friends or other family members.
• Want them to spend a lot of time with you. This can be hard, especially if they have jobs or young families of their own.
• Find it hard to receive--rather than give--comfort and support from them.
• Feel awkward when they help with your physical care, such as feeding or bathing.

As the adult daughter of a woman with ovarian cancer said,

"Mom was always the rock in the family. Whenever any of us had a problem, we could go to her for help. Now we had to help her. It was almost as though we were the parents and she was the child. To make it even harder, we had our own children to take care of and jobs to go to."

Talking With Your Adult Children

It is important to talk about cancer with your adult children, even if they get upset or worry about you. Include them when talking about your treatment. Let them know your thoughts and wishes. They should be prepared in case you don't recover from your cancer.

Even adult children worry that their parents will die. When they learn that you have cancer, adult children may realize how important you are to them. They may feel guilty if they haven't been close with you. They may feel bad if they cannot spend a lot of time with you because they live far away or have other duties. Some of these feelings may make it harder to talk to your adult children. If you have trouble talking with your adult children, ask your doctor or nurse to suggest a counselor you can all talk with.

Make the most of the time you have with your adult children. Talk about how much you mean to each other. Express all your feelings--not just love but also anxiety, sadness, and anger. Don't worry about saying the wrong thing. It's better to share your feelings rather than hide them.

One who conceals grief finds no remedy for it. --Turkish Proverb

Cancer Risk for the Children of People Who Have Cancer

Now that you have cancer, your children may wonder about their chance of getting it as well. A higher risk for some types of cancer is passed from parent to child. However, this is not the case for every type. And everyone's body is different. If concerned, however, children should talk with a doctor about their risk of getting cancer.

Testing for certain genes can be a way to find out if a person is at higher risk of getting cancer. 

Although some genetic tests can be helpful, they don't always give people the kinds of answers they are seeking. Talk to your doctor if you or someone in your family wants to learn more about genetic changes that increase cancer risk.. He or she can refer you to a person who is specially trained in this area. These experts can help you think through your choices and answer your questions.

Family Matters: Talking To Your Children About Cancer

Even though your children will be sad and upset when they learn about your cancer, do not pretend that everything is okay. Even very young children can sense when something is wrong. They will see that you don't feel well or aren't spending as much time with them as you used to. They may notice that you have a lot of visitors and phone calls or that you need to be away from home for treatment and doctor's visits.

What the family talks about in the evening, the child will talk about in the morning. --Kenyan Proverb

Telling Children About Cancer

Children as young as 18 months old begin to think about and understand what is going on around them. It is important to be honest and tell your children that you are sick and the doctors are working to make you better. Telling them the truth is better than letting them imagine the worst. Give your children time to ask questions and express their feelings. And if they ask questions that you can't answer, let them know that you will find out the answers for them.

When you talk with your children, use words and terms they can understand. For example, say "doctor" instead of "oncologist" or "medicine" instead of "chemotherapy." Tell your children how much you love them and suggest ways they can help with your care. Share books about cancer that are written for children. Your doctor, nurse, or social worker can suggest good ones for your child.

Let other adults in your children's lives know about your cancer. This includes teachers, neighbors, coaches, or other relatives who can spend extra time with them. These other adults may be able to take your children to their activities, as well as listen to their feelings and concerns. Your doctor or nurse can also help by talking with your children and answering their questions. Or you can ask them if there's a child-life specialist on staff. This is a person who can help children understand medical issues and also offer psychological and emotional support.

How Children May React

Children can react to cancer in many different ways. For example, they may:

• be confused, scared, or lonely
• feel guilty and think that something they did or said caused your cancer
• feel angry when they are asked to be quiet or do more chores around the house
• miss the amount of attention they are used to getting
• regress and behave as they did when they were much younger
• get into trouble at school or at home
• be clingy and afraid to leave the house

"Now that my Mom has cancer, everything has changed. I want to be with her, but I want to hang out with my friends, too. She needs me to help with my little brother, but what I really want to do is play football like I used to."

Teenagers and a Parent's Cancer

Teens are at a time in their lives when they are trying to break away and be independent from their parents. When a parent has cancer, breaking away can be hard for them to do. They may become angry, act out, or get into trouble.

Try to get your teens to talk about their feelings. Tell them as much as they want to know about your cancer. Ask them for their opinions and, if possible, let them help you make decisions.

Teens may want to talk with other people in their lives. Friends can be a great source of support, especially those who also have serious illness in their family. Other family members, teachers, coaches, and spiritual leaders can also help. 

Encourage your teenage children to talk about their fears and feelings with people they trust and feel close to. Some towns even have support groups for teens whose parents have cancer. Also, ask your social worker about Internet resources for this group. Many have online chats and forums for support. 

What children of all ages need to know: About cancer Nothing your child did, thought, or said caused you to get cancer. You can't catch cancer from another person. Just because you have cancer does not mean that others in your family will get it, too. Just because you have cancer does not mean you will die from it. In fact, many people live with cancer for a long time. Scientists are finding many new ways to treat cancer. About living with cancer in the family Your child is not alone. Other children have parents who have cancer. It is okay to be upset, angry, or scared about your illness. Your child can't do anything to change the fact that you have cancer. Family members may act differently because they are worried about you. You will make sure that your children are taken care of, no matter what happens to you. About what they can do They can help you by doing nice things like washing dishes or drawing you a picture. They should still go to school and take part in sports and other fun activities. They can talk to other adults such as teachers, family members, and religious leaders.

Intimacy & Cancer: That Thing Called Love

At some point, when you are feeling better from your  treatments, you and your partner or spouse may be ready for intimacy. Often, as we all know, even on a good day, we don’t always have feelings of desire at the same time.  It is no different when you are dealing with cancer. It helps  to have open lines of communication. Your partner may  be concerned that voicing a wish to be intimate again will be a source of stress and upset for both of you.

Tell your  partner how you are feeling about intimacy and just as important, let him/her share their feelings with you. Invite  them to ask questions. Many partners need reassurance that the person with cancer still has an interest in being intimate, and vice versa. Remember, intimacy isn’t only about physical attraction but how you and your partner or spouse thinks about your relationship together.

If you have advanced or metastatic thyroid cancer and are undergoing chemotherapy or radiation  treatment, ask your doctor or nurse when it is safe for you to be sexually active. This requires that your blood chemistry be at values that insure you have enough red, white and platelet blood cells.

If you are undergoing chemotherapy or radiation therapy always use a barrier when having sex. This most often is  a condom but can also be a dental dam that covers the vaginal wall. Barriers also protect both genders from any source of infection and women from pregnancy.


Consider different types of sexual expression other than  those that require penetration. Sensual massage focusing  on the whole body as well as the genitals is a safe alternative.  If you are a women who has trouble lubricating, ask your  oncologist or gynecologist to suggest different lubricants and moisturizers that do not contain any of the forms of estrogen.  If you are a man having trouble getting an erection, ask  your oncologist or urologist to prescribe an appropriate  erectile dysfunction medication.

If you find it difficult to have an open conversation about intimacy with your loved one consider couple’s counseling to help you both learn to cope.

Family Matters: Spouses and Partners

"I was very scared when my husband was diagnosed with cancer.  He had always taken care of me and we did everything together. I was afraid I simply wouldn't  be strong enough to help him through his treatment. I was so afraid that he might not recover, and I was also afraid to talk with him about my fears because I didn't want to upset him."  

Your husband, wife, or partner may feel just as scared by cancer as you do. You both may feel anxious, helpless, or afraid. You may find it hard to be taken care of by someone you love.

People react to cancer in different ways. Some cannot accept that cancer is a serious illness. Others try too hard to be "perfect" caregivers. And some people refuse to talk about cancer. For most people, thinking about the future is scary.

It helps if you and the people close to you can talk about your fears and concerns. You may want to meet with a counselor who can help both of you talk about these feelings.

Sharing Information

Including your spouse or partner in treatment decisions is important. You can meet with your doctor together and learn about your type of cancer. You might want to find out about common symptoms, treatment choices, and their side effects. This information will help both of you plan for the future.

Your spouse or partner will also need to know how to help take care of your body and your feelings. And, even though it's not easy, both of you should think about the future and make plans in case you don't survive your cancer. You may find it helpful to meet with a financial planner or a lawyer.

Staying Close

Everyone needs to feel needed and loved. You may have always been the "strong one" in your family, but now is the time to let your spouse or partner help you. This can be as simple as letting the other person fluff your pillow, bring you a cool drink, or read to you.

Feeling sexually close to your partner is also important. You may not be interested in sex when you're in treatment because you feel tired, sick to your stomach, or in pain. But when your treatment is over, you may feel like having sex again. Until then, you and your spouse or partner may need to find new ways to show that you care about each other. This can include touching, holding, hugging, and cuddling.

Time Away

Your spouse or partner needs to keep a sense of balance in his or her life. He or she needs time to take care of personal chores and errands. Your partner will also need time to sort through his or her own feelings about cancer. And most importantly, everyone needs time to rest. If you don't want to be alone when your loved one is away, think about getting respite care or asking a friend to stay with you. 

Family Matters: Changes to Roles in the Family

When someone in a family has cancer, everyone takes on new roles and responsibilities. For example, a child may be asked to do more chores or a spouse or partner may need to help pay bills, shop, or do yard work. Family members sometimes have trouble adjusting to these new roles.

Adjusting to Your New Situation

Many families have trouble getting used to the role changes that may be required when a loved one has cancer.

Money. Cancer can reduce the amount of money your family has to spend or save. If you're not able to work, someone else in your family may feel that he or she needs to get a job. You and your family may need to learn more about health insurance and find out what will be covered and what you need to pay for. Most people find it stressful to keep up with money matters. 

Living arrangements. People with cancer sometimes need to change where they live or whom they live with. Now that you have cancer, you may need to move in with someone else to get the care you need. This can be hard because you may feel that you are losing your independence, at least for a little while. Or, you may need to travel far from home for treatment. If you have to be away from home for treatments take a few little things from home with you. This way, there will be something familiar even in a strange place.

Daily activities. You may need help with duties such as paying bills, cooking meals, or coaching your children's teams. Asking others to do these things for you can be hard. A young father in treatment for colon cancer said,

"When I came home from the hospital, I wanted to be in charge again but simply didn't have the energy. It was so hard to ask for help! It was easier to accept help when I realized that my kids felt that they were contributing to my recovery."

Developing a Plan

Even when others offer to help, it's important to let people know that you can still do some things for yourself. As much as you're able, keep up with your normal routine by making decisions, doing household chores, and working on hobbies that you enjoy.

Asking for help is not a sign of weakness. Think about hiring someone or asking for a volunteer. You might be able to find a volunteer through groups in your community.

Paid help or volunteers may be able to help with:

• physical care, such as bathing or dressing
• household chores, such as cleaning or food shopping
• skilled care, such as giving you special feedings or medications

Respite care. Just as you need time for yourself, your family members also need time to rest, have fun, and take care of their other duties. Respite care is a way people can get the time they need. In respite care, someone comes to your home and takes care of you while your family member goes out for a while. Let your doctor or social worker know if you want to learn more about respite care. 

Learning You Have Cancer: Family Matters

Cancer will change your life and the lives of people around you. Your routines may be altered. Roles and duties may change. Relationships can be strained or strengthened. Dealing with money and insurance can cause problems. You may need to live with someone else for a while. You may need help with chores and errands. Most people find that if they, their friends, and family talk about the cancer and how it makes them feel, they feel closer to each other.

Families are not all alike. Your family may include a spouse (husband or wife), children, and parents. Or maybe you think of your partner or close friends as your family. In this book, "family" refers to you and those who love and support you.

Cancer affects the whole family, not just the person with the disease. How are the people in your family dealing with your cancer? Maybe they are afraid or angry, just like you.

When you first find out you have cancer and are going through treatments, day-to-day routines may change for everyone. For example, someone in your family may need to take time off work to drive you to treatments. You may need help with chores and errands.

How your family reacts to your cancer may depend a lot on how you've faced hard times in the past.

Some families find it easy to talk about cancer. They may easily share their feelings about the changes that cancer brings to their lives. Other families find it harder to talk about cancer. The people in these families may be used to solving problems alone and not want to talk about their feelings.

Families that have gone through divorce or had other losses may have even more trouble talking about cancer. As one woman with advanced thyroid cancer said,

"Talking about my cancer was rough at first. My husband and I divorced five years ago, so my mom had to move in and help me with the boys. Eventually, I was able to tell my ex-husband about my cancer, and he helped the boys understand. Our family has been through a lot, and we'll get through this, too. To me, the only constant in life is change."

If your family is having trouble talking about feelings, think about getting some help. Your doctor or nurse can refer you to a counselor who can help people in your family talk about what cancer means to them. Many families find that, even though it can be hard to do, they feel close to each other when they deal with cancer together.