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Related ESUN Articles

Guidelines for Patients, Caregivers and Physicians

Guidelines for Parents of a Child with Sarcoma

The Importance of Treatment at a Specialty Center for Sarcomas

The Importance of Second Opinions for Sarcoma

Dealing with the Side Effects of Sarcoma Treatments

Related Resources

Becoming the Expert: The ABCDs of Doing On-Line Research into Your Cancer

Managing a Rare Cancer

In this series of more than 50 videos, doctors and nurses talk about sarcoma diagnosis, treatment, research, and more.

A Guide to the Sarcoma Universe for Those who Have Just Arrived

An ESUN Article

Elizabeth Goldstein-Rice
Mary Sorens

Authors' Note: We recommend that you print this article and share it with those who are supporting you.

On the day of diagnosis, whether you are sitting on the examining table, holding the patient's hand, or answering a friend's phone call, sarcoma is a new and frightening experience. There is so much to accept and understand, and it can be difficult to get your bearings.

This article is designed to help you and those around you navigate the sarcoma universe.  It provides important facts about sarcoma and its treatment, and it is meant to be a useful guide for sarcoma patients and those who advocate for them, including their parents, family and friends. 

1. Know that you are not alone.

There are people all over the world who have found themselves in a similar situation. They know what it is like to be shuffled from one office to the next, waiting to see doctors, waiting for results, and waiting for treatments. Sometimes it feels like everything is happening too fast, and sometimes your patience will be tested. You may find yourself overwhelmed as you come to realize the gravity of the situation. But people just like you have been down this road, and you can too.

2. Prepare to handle the practical matters.

Getting Organized

The following bits of information and scraps of paper may be a part of your life for a while:

• Appointment cards
• Addresses and directions
• Receipts from physicians, the pharmacy, transportation costs, etc.
• Testing orders and test results (some of which may be in CD format)
• Insurance forms and receipts
• List of questions and answers discussed with doctors
• Printouts from online support groups and online research

With this in mind, you can begin your journey by deciding how to keep all of this information organized. Make it part it part of your routine to keep your personal set of records up-to-date. Some people use a three-ring binder that can easily be carried to appointments. Dividers help to keep things organized; pockets can hold appointment cards and CD's; and a hole-punch can be used to add new records as they are received. On your records, use a highlighter or pen to mark the date, the type of report, and any noteable findings, so that this information will be easy to find later.

Your Medical Records: Having a copy of your medical records can help you communicate with your healthcare team, inform physicians of recent results, and handle issues that arise long after treatment is finished. Important records include doctor's notes, lab results, and reports from pathology, surgery, and radiology. These records can usually be requested from the hospital's department of medical records. Copies of scans on CD can also be requested from the radiology department or film library.

Some countries allow restricted access to medical records, but in the United States, access to personal medical records is a patient's right.

Several forms, worksheets and notebooks are currently available online that may help you to get organized:

• The Amschwand Sarcoma Cancer Foundation Survivor Starter Notebook
  
• The Sarcoma Patient Starter Notebook from the Karen Wyckoff Rein In Sarcoma Foundation
• The Lance Armstrong Foundation provides Survivorship Worksheets and a Survivorship Notebook. The notebook is a free resource, but you may find it bulky, and delivery can be slow. The worksheets, on the other hand, can be printed and added to your personal binder or folder.

Friends and Family Communication Plan

Having the same conversation with a dozen people is exhausting.  To avoid repeating the same information, stories and updates to family, friends and support groups, consider:

• Having a "point person" who will spread the latest news for you
• Sending group e-mail updates to family and friends
• Starting your own web page at a site like CaringBridge or MyLifeline. Both of these sites are run by non-profit organizations with the mission to help patients and families keep in touch. The task of updating the site can even be delegated to a close friend or family member, especially during hectic times. These web pages also provide an opportunity for your friends and family to respond with supportive and encouraging messages along the way.
• Creating a weblog (many services like Blogger are free) or a yahoo group for your friends and family to follow.

The Schedule

There will be appointments - and lots of them! It will be helpful to choose one calendar and make it the "master schedule" on which every appointment is written. If you are using a binder for your records, you can purchase a hole-punched calendar from an office supply store and insert the calendar in the front of the binder. Make sure to select a calendar design that leaves room for you to note the name of the doctor, the time and location of the appointment, office phone number and the purpose of the appointment. If you have a cell phone or PDA, its calendar function may be especially useful, as appointments and contact numbers can be typed in wherever you are.

Health Insurance

Every insurance company and plan has its own way of handling claims for cancer-related medical expenses, so this subject will be addressed briefly, with some hints as to how to deal with insurance issues as reported by sarcoma support group members.

If your company has an Employee Assistance Program (EAP), call them.  EAP counselors can be a big help in prioritizing, planning, and reducing stress.

Call your insurance company and ask if you qualify to speak with a patient coordinator, patient navigator, case manager or cancer network specialist. Having a direct contact or a specific department to call can make it easier for both you and the insurance company to work out any problems or billing errors.

Check your bills! If you find errors in your medical billing, tell your doctor and staff, especially if you're being treated at a large center. You may be able to get the name of a billing specialist who can work with you to correct the errors.

If the patient is your child, is 18 years or older, and is at risk of losing health coverage because of the inability to work or attend school, ask someone at your insurance company if there is a provision to cover dependent adult children who are medically disabled. Many insurance plans have this option.

If your insurance company says they will not cover something, find out if your state requires them to cover it. Start by visiting the National Association of Insurance Commissioners and clicking on your state.

Uninsured? There are options for cancer patients without health insurance. Learn about Assistance Programs for the Uninsured at the National Cancer Institute's website.

Finances

Financial assistance and services are available to cancer patients that can help with co-pays, medication costs, housing costs, transportation and more. Consult the support section of SarcomaHelp.org's Resources Page for more information. The task of investigating these sources of assistance can also be assigned to someone you trust.

Even with good insurance and assistance, the cost of cancer care can be surprising. Transportation costs, food away from home, clean-up of the patient environment, and travel expenses all add up. Many families benefit from setting up a special bank account to accept donations to help with these expenses. Asking friends and family for help can be a difficult step to take, but they often welcome the opportunity to help. You might ask a close friend or family member to spread the word on your behalf.

Tax deductions: Consider keeping your receipts for medical expenses and related travel, as they may be tax deductible. Some pharmacies, hospitals and doctor's offices can help you by providing a year-end printout that shows all of your co-pays. More information about medical tax deductions in the United States can be found at the IRS website.

Planning...to be Flexible

About that calendar you've set up to stay organized?  Write in pencil.  It will change. 

Welcome the concept of flexibility into your life. Perhaps you can picture yourself as a tree bending in the breeze. Try to maintain that sense of flexibility as you go through treatment.  What you are told at the outset may not be what actually happens. Plans can be altered based on the effectiveness of treatments, and unexpected side effects can crop up. You may find yourself at a party when you thought you'd be in the hospital. Or you might end up in the hospital when you were planning to be at a party. Developing flexibility can help you to cope with whatever comes next.

3. Seek Expert Medical Care.

A Rare Disease

Sarcomas make up less than 1% of all cancer cases in the United States. About 1/5 of sarcoma cases occur in bones and joints, and the rest occur in soft tissue (1). There are more than fifty subtypes of sarcoma, which means that patients can find themselves with physicians who have never seen a patient in a similar situation.

The Initial Diagnosis

Some patients, especially those in large cities, are referred directly to a sarcoma center or sarcoma expert, where they have access to comprehensive and often cutting-edge treatments. Patients diagnosed in smaller medical centers, where teams of sarcoma experts are not available, may be offered different treatments or a different level of care.

Because of sarcoma training programs like the one run by the Kristen Ann Carr Fund, sarcoma specialists are now beginning to practice in the smaller medical centers in the United States. Your local sarcoma specialist may have received excellent training and may be prepared to handle your case. You might feel comfortable with your local doctor and with receiving care close to your home. You will need to weigh this comfort and convenience with the potential benefits of being treated by a team of experts in a high-volume center. In this process, you might think about your local physician's level of experience, sarcoma-specific training, years of practice, and the resources and experts that are available at your local medical center to assist in your care. Even if you have made up your mind to be treated locally, a second opinion at a sarcoma center that confirms your specific diagnosis and treatment options could be very helpful for you and your local specialist. Given the rareness of the disease, most doctors will not feel slighted if you tell them that you are seeking a second opinion or an expert in sarcoma treatment.

"The Importance of Second Opinion for Sarcoma" explores the value of getting a second opinion of all sarcoma diagnoses.

The treatment options that you are given can vary from one institution to the next. Your diagnosing physician may not know about or tell you about services that are offered at other facilities.  In the New York Times article "Second Opinion – Should Patients Be Told of Better Care Elsewhere?", Denise Grady considers the fact that often patients aren't told of treatment options available elsewhere.  She draws our attention to the fact that doctors are currently under no obligation to advise patients of specialized procedures, promising trials or the existence of highly-skilled professionals at other locations. The burden is on the patient to find out about, and request help in getting access to, these resources.

In some cases, the same treatments can have different outcomes at different hospitals. In the article "Should informed consent for cancer treatment include a discussion about hospital outcome disparties?," the authors explain that:

Several studies have found disparities in the outcome of medical procedures across different hospitals—better outcomes have been associated with higher procedure volume. An Institute of Medicine workshop found such a "volume–outcome relationship" for two types of cancer surgery: resection of the pancreas and esophagus. (2)

Though not related specifically to sarcoma, the article might cause patients to consider more seriously having surgery at a high-volume center.

Seeking an opinion or treatment at a sarcoma center

Specialty, or high-volume, sarcoma centers are good places to go for consultations, as quickly as possible, after diagnosis. The specialists there have typically seen hundreds of sarcoma cases and have personal experience with producing remissions using treatments local oncologists may not be able to administer. Surgeons in sarcoma centers may also have extensive experience in particular procedures, such as limb salvage surgery. These specialists are accustomed to providing second opinions for sarcoma patients. They will not be offended if you listen to their advice and then decide to receive treatment elsewhere.

Insurance Companies and Second Opinions: In many cases, your insurance company is required to pay for a second opinion. If you are patient at an HMO like Kaiser, you may need to specifically request an "out of plan provider" to see a sarcoma expert at a high volume sarcoma center. This request can be made directly to the insurance company without involving your doctor. If your request for a second opinion is denied, you can speak with an ombudsman or social worker at your HMO, speak to a hospital social worker or financial counselor, seek legal counsel, or consult the Patient Advocate Foundation for free legal assistance.

Your diagnosis and treatments, including pathology, chemotherapy, radiation and surgery, can be performed by different doctors in different medical groups if you choose. Feel free to ask your doctor to consult with specific experts or help you make appointments elsewhere. You can also call for an appointment yourself, but the process may be quicker when the first contact comes from a doctor familiar with your case. Often a good working relationship can be developed between doctors at a sarcoma center and your local hospital that will allow you to benefit from the expertise of the sarcoma center while also receiving much of your treatment closer to home.

"The Importance of Treatment at a Specialty Center for Sarcoma" examines research that supports the need for consultation at a high-volume sarcoma center.

A few notes about specialists and specialty centers:

• Seeing an orthopedic oncologist, as opposed to a regular orthopedist or general surgeon, is critical in bone sarcoma care. Orthopedic oncologists often practice in sarcoma centers. They can also be found by searching the database of specialists in the Musculoskeletal Tumor Society.
• Just because a surgeon is an expert does not mean he or she has done the procedure you need. Ask how many times he or she has done your particular procedure!
• There are radiologists with expertise in sarcoma – find out if there is one at your medical center.
• If your diagnosis is an unspecified type of sarcoma, or if there seems to be any doubt about your exact diagnosis, ask if your slides can be sent to a pathologist who specializes in sarcoma.
• Not all children's hospitals have a sarcoma center.
• Pediatric cancers can be diagnosed in adults! Some hospitals will not put adults who have been diagnosed with pediatric sarcomas in a pediatric sarcoma program, even if the pediatric sarcoma program has a strong team with more expertise and could be more beneficial to the patient.
• Some hospitals always put an adult who has been diagnosed with a pediatric sarcoma in the pediatric program, because it is the program with the most sarcoma experts.

4. Communicate openly with your medical team.

In Fighting Cancer: A step-by-step guide to helping yourself fight cancer, the authors comment, "The two most common complaints with all cancer patients are fear of the unknown and failure of communication with their doctor" (3). A lot of people find themselves nervous around doctors, stumbling over words when trying to voice their concerns and fears. But as you deal with sarcoma, it is possible to grow in your ability to communicate with doctors and nurses, to learn to be proactive in your care, and to develop a better understanding of medical information. Remember that you are the best expert in how you are feeling and how you want to be treated. Some appointments will be more difficult or emotional than others, but each appointment can be a learning experience that builds your confidence and understanding.

To handle the stress of medical appointments, write down your questions ahead of time, bring a friend with you, and write down the doctor's answers while you're in the office. Don't be afraid to ask a doctor to explain what he or she is saying, to ask for examples, or to ask about other options. Review the practice guidelines that are used at the top cancer centers in the United States so that you can more easily understand and discuss treatment options. If you cannot establish an open and trusting relationship with your doctor, ask a loved-one to observe an appointment and offer insights, or see a different doctor if possible.

As treatment progresses, keep the lines of communication open with your healthcare team. Call your doctor if you have new worrisome symptoms, or if you don't hear about test results. Talk to your doctor about pain. Admitting that you are in pain is not a sign of weakness; it is a sign of honesty and legitimate need. When you are in pain and under a doctor's care, most medications that help pose little risk of addiction. And medication can really help! As your pain level changes, make sure that your healthcare team is aware of your pain level. Don't be afraid to ask for more pain relief when you need it. It is also a good idea to make sure that your pediatrician or general physician is kept up to date about your current medications and treatments.

Two helpful online articles include "Communicating with Your Doctor and Healthcare Team" from the Sarcoma Alliance and "How to Prepare for a Doctor's Appointment" from the Lupus Foundation of America.

The People You'll Meet

Along the way, patients and caregivers meet and have discussions with all kinds of professionals.

• Medical oncologists typically handle systemic treatments like chemotherapy and may coordinate your entire treatment plan.
• Radiotherapists will discuss the type of radiation therapy that may be effective and when it should be administered.
• Surgeons are focused on removing tumors while saving vital organs and body functions.
• Nurses in the oncologist's office, the infusion center, clinic and hospital can be your friends and your greatest allies. Cultivate good relationships with them and feel free to ask them any questions you may have. Nurses can provide nutrition tips and helpful advice to keep patients on track with their treatment program.
• Social Workers can help with many issues, from practical concerns like the need for transportation to the complexities of handling family conflicts during treatment.
• Child-Life Specialists can help children understand cancer and express their feelings in a safe way.

Asking for Help

Health-care workers often have the information you need or know how to get it, but you have to ask! Try to build good working relationships with every staff person you encounter.

The following are some examples of questions that your team can answer:

• Do you have a research nurse who can help me search for clinical trials?
• Is a stem cell transplant a better option in this scenario?
• For the patient who cannot sleep:  Did the doctor leave orders for something that will help with sleep?
• For the surgery patient who is in pain: What can you do to make this pain more bearable? If the situation does not improve, often the nurse in charge will help, or your doctor can be paged to change your medication orders.
• In the ER:  Patients who are neutropenic need a clean room as quickly as possible. If you're an adult and the regular ER staff doesn't seem responsive to this request, ask if there's a pediatric ER with a clean room available.

5. Be Aware of Your Needs. Take care of yourself.

Whether you are patient or a caregiver, your physical and emotional needs are important. If you are not sleeping, ask your physicians for a short-term sleep remedy so that you can cope during the day and remember details. Caregivers also need to be proactive about their own physical health. Make sure to discuss any health difficulties that you have with your doctor and do what you can to head off foreseeable medical problems of your own.

Know that the first few weeks after diagnosis are a heartache and exhausting for everyone.  This is normal at this stage; you are not losing your mind.  In fact, it hardly seems fair that patients and families are called on to make key decisions in this state of mind.

Learn more in "The Emotional Impact of a Cancer Diagnosis" from the American Cancer Society. To read guidelines about nearly every cancer-related concern, see "Coping with Cancer" from the National Cancer Institute.

If you find that overwhelming feelings are preventing you from taking care of yourself, keeping appointments, or making decisions, reach out. Most cancer centers have a department of counselors and social workers who are ready to help. Talking with a counselor can allow you to sort out your thoughts and feelings, feel understood, find clarity and empower yourself. If the patient seems to be handling everything well, a friend or family member might benefit the most from counseling. It can be incredibly difficult to watch a loved-one suffer, and a friend's grief is just as real as the patient's pain.

Trusting Yourself

You may be feeling lost in a range of unfamiliar thoughts and emotions right now. But you have developed coping skills throughout your lifetime. Don't underestimate your ability to use your experiences and strengths to rise to this challenge. If you tend to be analytical, you will most likely be analytical throughout the cancer experience. You may ask more questions or "worry" more than your loved-ones think is necessary. If you tend to be melancholy, you may have some dark days during cancer. You may not be as positive as others think is best. If you tend to be an optimist, you may surprise people with your positive spin on events that are very difficult for them to watch. A 2002 review of research studies concluded that patients' attitudes do not appear to be related to cancer recurrence or survival rates. So do what works for you! And remain open to learning new skills that will help you endure.

Want to add to your coping skills inventory? Check out the Coping Checklist for Patients and Coping Checklist for Caregivers from the American Cancer Society.

Letting Others Help

When people ask if they can help, let them.  Cooking, cleaning, dog-walking, carpet cleaning, lawn care, driving, helping out with other children or just being available to listen at odd hours – these are all kindnesses that can help your entire family. Sarcoma treatment can take a long time to complete even in the best of cases. You may not feel like you need help today, but in several months you might wish you had accepted more help along the way. Accepting help from the start allows your friends and family to create a system that will be available when it is most needed. To facilitate this process, consider having a friend set up a page for you at Lotsa Helping Hands. This is a free service that allows friends and family to coordinate helpful tasks for you.  

Share the article "Helping a Friend Deal with Sarcoma" with your friends. It will give them ideas about how to support you and your family.

Handling The Expectation of Others

There will be people who don't understand the sudden change in your priorities and people who drain your energy for various reasons. This may be the time to let some distance grow between you. Lower your expectations of yourself when it comes to making everyone happy or doing all the things people have come to expect of you. Do it for your own sanity and for the good of those with you on this journey.

Staying Present

Take one day at a time.  Focus on one treatment at a time.  Be aware of the possibilities, potential difficulties, numbers and percentages, but don't obsess over them.

Remember to play and to laugh. You have the power to brighten so many moments with humor and creativity. In The Healing Power of Humor, Allen Klein writes: "When we can allow some humor to be a part of our pain, we are not as directly involved in our suffering. It is as if we put on someone else's glasses to view our situation. Everything seems familiar, but there is a slightly different look to the scene. (4)"

Enjoy the good times, celebrate the good news wholeheartedly, nurture hope and never forget that there is a light at the end of the tunnel!

6. Prepare for treatment.

Fertility

A sarcoma diagnosis often requires immediate action, and several sarcoma treatments pose a high risk to both men's and women's fertility (See Fertile Hope's Fertility Risk Calculator). If fertility is important to you, bring it up with your doctor. Men's options include sperm banking. Proactive patients usually have time to arrange for this procedure before treatment begins. [Even if life seems to return to normal after treatment, it is wise for men to to have their sperm count tested before discontinuing sperm storage.] Women's options are more complex, but can still be discussed and considered. There are also fertility options for adolescent patients. Some people regain fertility after treatment and go on to have healthy children, but there are no guarantees.

To learn more about fertility issues and cancer treatment, read "Cancer and Fertility"in the Electronic Sarcoma Update Newsletter, or visit Fertile Hope.

Dental Work

If you have time, go to the dentist before treatment starts. Healing and fighting infection is often problematic during and after treatment.

Disease Staging

Staging is a system of classifying a cancer based on its microscopic characteristics. A tumor's stage is one of the pieces of information used in determining your treatment plan. It's also a "prognostic indicator," meaning that it is used to come up with that magic number, the predicted outcome for people with similar tumors. The art of prediction is fortunately just that, an art, and you should not be discouraged if you're handed a low number. Do take it as a sign that you may want to hear what other doctors have to say. A frightening statistic is never good, but it may serve a good purpose - to get you more involved and invested in your medical care.

A description of the staging for soft tissue sarcomas can be found in the article "How are Soft Tissue Sarcomas Staged?"

A fairly technical description of sarcoma staging is found in the Sarcoma Learning Center.

Seattle Children's Cancer and Blood Disorder Program website tells us that, in regard to bone tumor and sarcomas, "The staging system is different for each type of cancer and sarcoma."

Clinical Trials

Clinical trials offer access to cutting edge treatments, and many offer these treatments to everyone who enters the trial (no one is given a placebo). In certain cases, patients benefit from considering and starting clinical trials at diagnosis. In fact, some clinical trials are designed for newly diagnosed patients in specific situations, and some offer promising treatments that cannot be given outside of the clinical trial. Talk to your doctor about this possibility, and remember that you may need to do the research yourself. It is difficult for physicians to keep up with trials that are offered at different locations, and a trial offered somewhere else may be the best for your situation.

To learn more, visit the Clinical Trials Learning Center, which contains a searchable database of clinical trials for sarcoma patients. Make sure to use the menu in the right sidebar to read about considering trials, the types and phases of trials, and to find related resources. Another helpful resource is the National Cancer Institute's Introduction to Clinical Trials.

7. Get through treatment!

Hospitalization

There will be hospitalizations.  Even if you receive treatment as an outpatient, you are very likely to require hospitalization to manage the side effects of chemotherapy at some point. If your treatment will require surgery, then you will likely be hospitalized during the post-surgery recovery period as well.

Prepare yourself ahead of time to make a hospital room your home on short notice.  Have a bag ready, with a list of the things you want in that bag for unscheduled admissions, such as when you develop a fever when your counts are low.  Pack your own pillow, blanket, fuzzy slippers and bathrobe, portable DVD player with new DVD's purchased especially for the occasion (great for teens!), hand-held game sets, sound machine with headphones, stuffed animals, plastic flowers, books and magazines – whatever helps you to relax and settle into your own hospital-life routine.  Make sure to bring your medications list and any logs or worksheets that you've been keeping to better answer questions as to your current condition and needs.

Many hospitals and doctors' offices have a "Patient's Rights and Responsibilities" document that clearly spells out that facility's commitments and expectations in regard to the patient/medical provider relationship. We encourage you obtain a copy and review it. These documents deal with a variety of important issues. A few informative samples can be found at Memorial Sloan Kettering Cancer Center, Dana-Farber Cancer Institute, and M. D. Anderson Cancer Center.

Outpatient Treatment

It's a common refrain, heard in regard to more than one well-known multi-block hospital, that being outpatient can be difficult both physically and psychologically. This is especially true when the patient has several appointments in different departments on the same day. Big city staff may not be as friendly as those at your local hospital, and patients are usually left to fend for themselves in maneuvering the facility and finding what they need. 

If you're an outpatient and have appointments in more than one center in a single day, make sure the front desk at each center knows about your appointments, and ask them to notify the other departments if you run late. 

The best part of outpatient treatment is that you get to climb into your own bed when you get home from chemo (likely with full control of the remote!), away from the medical world. You can eat familiar food, sit in your favorite chair and grouch at your favorite dog.

You may be able to work out an arrangement, often with support from a home healthcare organization, to have chemotherapy as an outpatient. This process can involve learning how to change IV bags, use digital pumps and manage side effects. It's not a decision to make lightly, and it does require a commitment to "hands-on" caregiving, handling medical equipment, and dealing with the home healthcare agency. The benefits vary based on the patient's needs. Some patients feel more secure receiving chemotherapy at the hospital, and some feel much more at ease in their own bed.

Inpatient Treatment

If you're treated as a pediatric patient, you may not have the option of receiving chemo as an outpatient.  If you'd rather stay in one place, avoid the hassles of having to navigate the hospital, and can come up with ways to amuse yourself in confinement, consider the inpatient option. 

For those headed to the pediatric units, you will likely have more entertainment options at hand than the adult units do. There has been a trend towards updating pediatric floors with electronic games, playrooms, and a child-life services staff. 

Young adults may find that they don't feel comfortable on a floor with pediatric patients and their families. For those in their late teens or twenties, the inpatient/outpatient choice determines whether they will be "the oldest one on the floor" or "the youngest one in the infusion center." Either of these situations can leave young adults feeling isolated and misunderstood.

Dealing with Chemotherapy and Radiation Therapy

Protective agents can protect your organs from the harmful effects of radiation and chemotherapy. These agents exist for the heart, kidneys, bladder, liver and mucous membranes (5). Ask your doctors about these agents. You can also check with the nurses who are administering chemotherapy to ensure that protective agents are being administered.

For detailed information about current organ protection recommendations, check out the American Society of Clinical Oncology 2008 Clinical Practice Guideline Update: "Use of Chemotherapy and Radiation Therapy Protectants."

Side effects of treatments are one of the chief concerns of patients and their loved-ones. There is an ESUN article devoted to dealing with side effects here.

Rounds and more rounds: You may need to plan a safe and comfortable recovery period from certain treatments. The body is at risk of infection after chemotherapy, so your doctor may recommend steps to avoid exposure to bacteria and viruses. In general, it gets harder to recover in the later rounds of chemotherapy, and exhaustion increases with later radiation treatments. You will learn to expect ups and downs and may even be able to plan activities based on your treatment schedule. Just remember that each round can be different...remember flexibility.

Nutrition During Treatment

Many support group participants feel that physicians and other health-care providers should be more forthcoming about the observed (if not scientifically validated) benefits of a good nutrition and nutrition-supplement education program. The usual nutritional advice often does not apply during treatment. For example, there may be risks associated with eating some raw fruits and vegetables during treatment.

There are a lot of caring, talented nutritionists who work with cancer patients and can help you to understand the do's and don'ts and the why's of nutrition during treatment. Best of all, they can work with both young children and teens to explain the change in age-appropriate terms and help them cope with the stress of making this important transition. If your nutritional plan involves any kind of supplements, make sure to discuss them with your oncologist, as some supplements may interfere with the effectiveness of chemotherapy drugs.

"Eating Hints for Cancer Patients" from the National Cancer Institute offers practical advice in handling all types of issues related to eating during treatment. "Nutrition in Cancer Care" is a more thorough guide from the National Cancer Institute.

Young Adult Issues

Most young adults are just starting to build a foundation of independence in school, work, and family life. As a young adult, you may be able to continue in school or work, but many patients end up taking a leave of absence. This can be very frustrating when your friends are moving on with their "normal" lives, but it is not your fault if you lack the energy or ability to continue your daily routine. The treatments for sarcoma are very aggressive, and just getting through them is an achievement! The hope is that you will be able to pick up your life again when all this is over, and that you'll live a long and full life, free of cancer.

As a young adult, you may feel the need to deal with doctors without inviting your loved-ones. You may need to maintain some control over the flow of information about your health, choosing to process information before telling even your closest family and friends. Or you may find yourself allowing your family to take over, thankful for the help, just wanting to "get it over with." Whatever approach you take is okay, even if it baffles those who are supporting you. That support system is very valuable, however you choose to make use of it.

Try to listen to the people who care for you most. Even if they don't understand how you feel, their ideas and suggestions may help! You may have some friendships that deepen and some that fall away. While it is hard to watch friends distance themselves when you are hurting, it is interesting to see who steps up to develop those relationships! Most survivors look back and are so thankful for the friends and family members who stood by them.

There are support groups specifically for young adults, both online and in or near cancer centers. Check out Planet Cancer or Adult Bone Cancer Survivors if you are considering joining an online group.

8. Seek support when you need it.

At one point or another in the process of treatment and recovery, a patient or caregiver may feel the burden of unanswered personal questions and concerns. "How do other people deal with this?" "How is this going to affect the rest of my life?" "Are there people who really understand what this is like?" Online support groups offer life-changing connections for those who are dealing with sarcoma. It is now possible for most patients to find others of the same age, diagnosis, treatment, and more. Most online support groups provide patients, survivors, and family members a place to feel understood and to connect, as well as to ask questions and discuss sarcoma.

When asked what they wished they had known from the time of diagnosis, respondents to an informal survey said that they wished they had been in touch with a sarcoma-specific support group (6). The resources they needed and could have found in a sarcoma support group included:

• Where to go for second opinions
• Names of doctors who have treated patients in a similar situation
• Details about the expertise of the sarcoma centers that these doctors work with
• Practical information about where to stay, what services are available to help travelers, what the weather is like, and just about anything else you want to know about how to maneuver the process of getting an appointment
• Answers to questions about specific clinical trials, talking to patients in the group who are participating in those trials.

Local support groups are another option. Local sarcoma groups are rare, so sarcoma patients may be placed in a group with patients who have had different cancer experiences. To find a local support group, check with your hospital or seek out a group like Gilda's Club or The Wellness Community. A word of caution: some sarcoma patients may feel isolated in a general support group, because sarcoma patients tend to be younger and may deal with more physical and functional effects of treatment.

If you are unable or uninterested in joining one of these groups yourself, you may suggest that a loved-one join to receive support for the both of you. There are even caregiver groups, such as the Yahoo group for young adult spouses of cancer patients.

SarcomaHelp.org provides a comprehensive list of sarcoma support groups and other support resources for patients and their families.

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Authors' Note: If you are ready to explore more information about sarcoma, we encourage you to visit Getting Started at SarcomaHelp.org.

References

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