Coping With Bone Cancer

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People deal with the distress and uncertainty of cancer in different ways. One strategy that often helps is to learn enough about the cancer to be able to ask questions about its treatment and about what the future may hold. Another is taking one day at a time and being sure to talk with friends and family.

Coping with bone cancer involves adjusting to the diagnosis, getting through treatment, making sense of life, and getting used to the 'new normal' thereafter.

Emotional

First, know that you don’t have to sort everything out all at once. It can take time to deal with each issue as it comes up, and that is both normal and necessary.

Osteosarcoma, Ewing sarcoma, and chondrosarcoma are the most common primary bone cancers and will be discussed here. The American Cancer Society has rich resources on many different cancers, including the bone cancers, and is a good place to start when trying to read up on your diagnosis.

But dealing with the diagnosis involves more than learning about bone cancer. Ask for help when you need it. Talking with professional counselors, clergy and cancer support groups also may be helpful. You can ask your doctor about support groups in your area or do some research online.

Physical

Your treatment for bone cancer may involve surgery, chemotherapy, radiation, or a combination of these therapies. Each treatment is associated with its own set of side effects, and so differing coping skills and strategies may be needed at different times in your cancer journey.

Coping With Surgery and Affected Limbs

Surgery is very common in the management of bone cancer. Any type of surgery can have risks and side effects, so you should not hesitate to ask the doctor what you can expect. And, if you have problems along the way, definitely let your doctors know about them. Doctors who treat people with bone cancer often will be able to help you with the particular problems that may come up.

Typically this is an orthopedic surgeon—a surgeon who specializes in muscles and bones—and one who is further experienced or specialized in treating bone tumors.

It is common for bone cancer to affect the legs or arms. Today, many people who have surgery for bone cancer have what are known as ‘limb salvage’ procedures. About 85 to 90 percent of patients with osteosarcoma in the appendicular skeleton (eg, legs, arms, knees, and thighs, but not skull, spine, or ribs) can now be operated on using a limb-sparing procedure, thereby avoiding the amputation. Limb preservation surgery can be complex and can include the placement of an artificial component entirely inside the body (an endoprosthetic device). Such devices can preserve the function of the limb, but there are drawbacks such as risk of infection and the need for a revision surgery 10 years later.

Less commonly, amputation may be required, which can result in the need for a distinct set of coping skills due to the loss of a limb. The loss of a limb can be challenging, and some people may feel hopelessness or grief afterward. The perception of one’s own body image can be affected. It may be the case that coming to terms with the feelings around having an amputation may be just as important as getting used to the practical things and the “new normal” in life after having an amputation and/or prosthesis.

Whether you have limb-salvage surgery or amputation, for patients with bone cancer, the cancer journey continues after surgery. Physical and occupational therapy play an important role in successful rehabilitation after surgery. Both passive and active range-of-motion exercises are important in maintaining optimal limb function, and working hard to get better can be an important part of coping.

Coping With Radiation

Radiation can be used as part of the process of making sure no cancer is left after surgery. It can also be used if the bone tumor is particularly hard to remove or if it’s hard to remove the whole tumor surgically.

The side effects of radiation depend on the part of your body that’s treated, and the most commonly encountered ones include skin changes where the radiation is given, feeling very tired, and having low blood counts.

It can help to know that most side effects get better after treatment ends, but some might last longer. Always communicate with your cancer care team about what you can expect as a result of treatment.

Coping With Chemotherapy

Chemotherapy may be used before surgery, after surgery, or both before and after. Chemotherapy can make you feel very sleepy or tired and weak, sick to your stomach, and cause your hair to fall out.

The good news is that these problems go away after treatment ends. Also, for many of the chemo-associated side effects such as nausea, there are effective treatments that can be used to address them, so if you have side effects, talk to your cancer care team so that they know what you are experiencing and can help.

Coping With Targeted Drugs

These are newer therapies that sometimes help when traditional therapies do not. There are side effects, but they tend to vary depending on which drugs are used.

Nausea, chills, fever, rashes, headaches, and diarrhea may be among the side effects experienced with targeted drugs, but your care team will let you know what to look out for depending on the individual agent used and your personal health history.

Social

Friends and family can be extremely helpful, and although they may not always understand your thoughts and feelings in the way you want them to, it often helps to talk to someone else about your hopes and fears. Opening up to others about the subject gives them permission to ask, listen, and learn how they can better support you.

Treatment requires some time away from your regular life, whether that’s school, college, or work. While there may be some concerns about “not telling the whole world” that you have cancer, it is important to tell at least those who need to know, and it’s likely that most people will be very understanding and supportive, perhaps even offering to help in any way they can.

Practical

Survivorship

Anybody who has ever had cancer will at some point worry about it coming back, and for some individuals it can be extremely hard not to worry about the cancer coming back. It may help to know that you are doing all you can to address that possibility.

You will be seeing your cancer doctor for years, long after you are treated. Be good about going to all of the follow-up visits. You will have exams, blood tests, scans, x-rays, and possibly some other tests to see if the cancer has come back. But, the longer you’re cancer-free, the less often the visits and tests are needed.

Nobody would ever ask to be diagnosed with cancer, but many people with cancer say it has changed their lives in positive ways, or that they would not be the same person today without having gone through that experience. As noted by the American Cancer Society, “You can’t change the fact that you have cancer,” but you can always change the way you live the rest of your life. This includes taking care of yourself physically, but also trying to avoid worrying excessively.

The National Cancer Institute has an entire web hub devoted to survivorship, coping with cancer,and many of the issues that may come up along the way. There is also a page by the American Cancer Society that is specific to living as an osteosarcoma survivor.

Caregiving

Both osteosarcoma and Ewing sarcoma can occur in relatively young individuals who are dependent on help from parents and others. Most osteosarcomas develop during adolescence, which is a very complex and delicate time in a person’s life. Similarly, the peak for Ewing sarcoma is between 10 and 20 years of age. 

In other words, parents act as crucial caregivers for many patients with bone cancer. And, like any major event affecting one family member, bone cancer and its treatment can have a profound effect on the whole family.

The American Cancer Society has developed resources for caregivers and for caring for children with cancer. There are also resources devoted to cancer caregiving, in general. Resources for caregivers often emphasize the importance of “care for the caregiver,” pointing out that hopelessness, guilt, confusion, doubt, anger, and helplessness can take a toll on both the person with cancer and the caregiver.

Indeed, caregiver burnout is a serious issue that can compromise the quality of care the person with cancer receives, but recognizing the signs of burnout is half the battle, and help is out there.

The National Cancer Institute also has excellent resources on these topics—not only on coping with cancer and the issues that come with survivorship, but also resources for family caregivers.

Sometimes after reviewing such materials about caregiving, people will come to learn that they have been “caregivers” for many years—it’s just that they don’t necessarily call themselves by that term or identify as such.

Sources:

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Forni C, Gaudenzi N, Zoli M, et al. Living with rotationplasty--quality of life in rotationplasty patients from childhood to adulthood. J Surg Oncol. 2012;105(4):331-6. doi: 10.1002/jso.22088.

Grimer RJ, Aydin BK, Wafa H, et al. Very long-term outcomes after endoprosthetic replacement for malignant tumours of bone. Bone Joint J.2016;98-B(6):857-64. doi: 10.1302/0301-620X.98B6.37417.

Hinds PS, Billups CA, Cao X, et al. Health-related quality of life in adolescents at the time of diagnosis with osteosarcoma or acute myeloid leukemia. Eur J Oncol Nurs.2009;13(3):156-163. doi: 10.1302/0301-620X.98B6.37417.