A Guide to the Sarcoma Universe
For Those Who Have Just Arrived
Tens of thousands of people around the world are diagnosed with sarcomas each year. These patients and their loved ones start the sarcoma journey with unique life histories, strengths and resources. Many share the same hopes: to deal well with the challenges before them, to experience as much goodness as possible, and to recover as fully as possible so that they can move forward with their lives.
At the start of the sarcoma journey, it can help to truly “take in” the fact that thousands of people have been down this road before. You are not alone! Many survivors walk ahead in the distance, having made it through these difficult days. Their words and experiences provide a vision of the way through cancer and into the future.
The Wisdom of Survivors
“Be seen at a cancer center that specializes in sarcomas. Educate and empower yourself to be a full partner in the development of a treatment plan. Engage and seek the support of others who are fighting similar battles.” - Alan, leiomyosarcoma survivor
“Trust your instincts and speak up. Ask lots of questions! Find a doctor you feel comfortable with who is familiar with your disease. You can get through this. Take it a day at a time. Plan little things to look forward to. It’s key to have things to live for and work towards. Accept that some days are bad and some are good and that’s okay. Surround yourself with people who support you - not ones that bring you down. And don’t ever underestimate hope!” – Rachel, Ewing’s sarcoma survivor
“This can be a long scary road, but the more you know and the more support you have the brighter and less scary the road gets.” – David, osteosarcoma survivor
“If you are with someone or around people who do not support you or help you in your time of need, get rid of those people. Staying happy and laughing as much as you can goes so far in recovery.” - Christina, synovial sarcoma survivor
Each person’s sarcoma experience will depend on the type of sarcoma that is diagnosed, where it is located and how advanced it is. This means that sarcoma patients deal with a wide variety of treatments that can impact their lives in different ways. Still, this diverse “group” of people must learn similar lessons and skills in order to handle the daily challenges of sarcoma, its treatment and effects.
This article is like a map for the sarcoma journey, complete with empowering insights that have been shared and discussed in sarcoma support groups. The tabs at the top of this article reflect common concerns at the time of a sarcoma diagnosis: How do I prepare for this journey? Where do I look for treatment, and what can I expect? How do I cope, and what support is available when I need it?
Preparing for the Journey
Cancer care involves a surprising amount of paperwork and a long list of appointments. Most families dealing with sarcoma rely on a family calendar (electronic or printed) that everyone can check and amend as needed. Many patients also keep a binder with dividers for different types of medical information (appointments, important contacts, facts about chemotherapy and medications, test results, questions to ask, etc.). When filing medical records, it can help to highlight the date of each report, the type of report, and any notable findings will make them easier to find and discuss.
Your Medical Records
Some countries only allow restricted access to personal medical records, but in the United States access to this information is a patient's right. Maintaining a copy of one’s medical records can improve communication with doctors and keep everyone "on the same page." Important records include doctor's notes, lab results, records of chemotherapies received that include the dates and dosages of treatments, and reports from pathology, surgery, and radiology. This information 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.
It is nearly impossible to prepare for the whole of cancer treatment. What a family is told at the outset may not actually happen. Plans change based on the results of further testing, the schedules of healthcare staff and equipment, the effectiveness of treatments, and side effects that arise. One patient might find himself enjoying a party when he expected to be in the hospital. Another will find herself in the hospital when she had planned to be at a party. Choosing to accept the unpredictable nature of the cancer journey and aiming to be as flexible as possible may just be the best preparatory step to take.
- For more notebook ideas, see the Survivor Starter Notebook and the Sarcoma Patient Starter Notebook.
- There are a few mobile apps that sarcoma patients recommend for organizing medical information: Cancer.net Mobile, the LiveStrong Cancer Guide iPad App and MyMedical.
Communicating with Family & Friends
Some patients and caregivers benefit from conversing with their family members and friends with each new medical development. Others find that repeating similar conversations with several people is frustrating and tiring. It can help to:
- Send e-mail or text updates to a list of friends.
- Create an online social networking group to facilitate support and spread news.
- Delegate the task of sharing news to a close friend or family member.
- Start a blog or a web page on a site like CaringBridge. Publishing online updates can be therapeutic, and comments from families and friends on these pages can be a source of encouragement.
Dealing with Healthcare Costs
Many families are concerned about paying the bills for cancer diagnosis and treatment. Social workers, nurse navigators and patient advocates are often available at cancer centers and can provide information about the assistance available to patients. They may be able to help patients secure transportation to and from appointments.
Local and national organizations in many countries provide financial assistance to help with the costs of medical appointments, medications, housing, and transportation to cancer care. It can help to assign a trusted friend to investigate these sources of assistance.
Even with good insurance and assistance, the cost of medical care may be a burden. Asking for help can be a tough step to take, but friends and family often welcome the opportunity to chip in and provide support. Many families set up a special bank account or an online fundraising campaign and let people know about it when they express a desire to help.
In the United States, dealing with health insurance is part of the financial strain of cancer treatment. In a wide variety of insurance plans, cancer patients can ask to be assigned to 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 the family to work out problems that arise with the insurance company. In addition, some employers provide Employee Assistance Programs (EAPs) that can be a big help in prioritizing, planning, and reducing stress.
Those who take the time to check their medical bills may find that, from time to time, their bills are incorrect. Talking with medical center staff or asking to speak with a billing specialist can bring about a quick resolution to billing issues (as opposed to discussing errors with an insurance company that is refusing to pay).
Patients who need an advocate to help deal with insurance issues can contact the Patient Advocate Foundation. When an insurance company refuses to cover something, it is possible that the state actually requires them to cover it. The National Association of Insurance Commissioners provides resources about coverage requirements in each state.
Medical expenses and related travel may be tax deductible, so consider keeping receipts for these charges. Pharmacies, hospitals and doctor's offices can usually provide a year-end receipt for all of an individual’s medical expenses.
Managing Fears and Feelings
One of the challenges that new cancer patients and their families face is the fear of the unknown.1 It can be shocking to discover that doctors, even sarcoma experts, cannot answer all of their patients’ questions with certainty. Physicians often present sarcoma patients with treatment options, as opposed to set plans, and invite patients to participate in making decisions that are a critical part of their care. While these options are discussed and treatment plans are developed, patients may feel as if they are standing still, overwhelmed by the fear of an unknown future.
"Sometimes it's okay to let the unknown be the unknown...or you'll drive yourself crazy." - Elizabeth
The truth is that life continues even when the future is uncertain, and each person can learn how to deal with daily life while keeping company with 'the unknown.' It might help to consider this encouraging news: With modern medical care, most people survive sarcoma.2 At any point along the way, a patient can ask her physician if the goal of treatment is to achieve a cure. When the doctor’s goal is a cure, the patient can focus on that goal and do everything possible to live well and recover fully. During treatment, some people find that it helps to limit their exposure to activities and media that that increase feelings of stress or sadness.
It may come as no surprise that insomnia, anxiety and depression are fairly common among cancer patients and their loved ones.3 These difficulties can impact a person’s ability to make medical decisions and to remain physically and emotionally healthy. It is important to discuss these issues with a doctor who can offer suggestions, including medications. Many patients and caregivers in online support groups share their feelings of gratitude that medications are available to help them through tough times.
At most medical centers, counselors and social workers are available to talk with patients and their families. Working with a counselor can allow a person to sort through thoughts and feelings, find clarity and feel empowered. Sometimes it is not the patient but a loved one who can benefit from counseling the most.
More about Managing Emotions
Cancer.net provides extensive, oncologist-approved information on dealing with uncertainty, stress, anger, anxiety, depression, fear and guilt.
Seeking Expert Medical Care
A Rare Disease
Sarcomas make up less than 1% of all cancer cases in the United States. About 80% of sarcomas occur in soft tissue, and the rest occur in bones and joints.4 There are more than 50 subtypes of sarcoma, which means that patients can find themselves with physicians who have never seen a patient in a similar situation.
Some patients, especially those in large cities, are referred directly to a sarcoma center (a multidisciplinary team of sarcoma specialists) where they have access to comprehensive and often cutting-edge treatments. Most sarcoma centers offer:
- Pathologists with years of experience in examining sarcoma tissue under a microscope and differentiating between the many types and grades of sarcoma tumors.
- Medical oncologists who have developed expertise in planning and coordinating the specific treatments that are used for sarcoma patients and helping patients to handle the effects of those treatments. This expertise is especially beneficial for patients who need aggressive chemotherapy protocols.
- Surgeon(s) who are experienced in removing sarcomas with wide margins when possible while saving the function of organs and limbs that increase patients’ quality of life.
- Orthopedic oncologists, as opposed to general orthopedists and oncologists, who are experts in bone sarcoma care.
- Experts in radiation oncology who have treated hundreds of sarcoma patients using one or more kinds of radiation therapy.
- A wide variety of clinical trials that can benefit newly diagnosed patients and those with advanced disease
It is important for all sarcoma patients to understand the beneficial resources available at sarcoma centers. Patients diagnosed at smaller medical centers may not have access to such resources; instead, they may (or may not) have access to a local sarcoma specialist. Most of these doctors have received excellent oncology training and have developed varying levels of expertise in sarcoma. Occasionally, a sarcoma patient will be referred to a general oncologist who does not specialize in sarcomas. It is almost always in the best interest of a sarcoma patient to see a sarcoma specialist.
Considering travel to a sarcoma center: After diagnosis, many patients must weigh the comfort and convenience of dealing exclusively with a local oncologist verses the potential benefits of traveling to receive treatment at a high-volume sarcoma center. It can help to seek a second opinion at a sarcoma center when making this decision.
Sarcomas are rare and complex enough that most oncologists are not bothered when their patients seek second opinions and can be quite supportive. Physicians in sarcoma centers are accustomed to providing second opinions for patients, and they understand that some patients will seek their advice and then choose to receive treatment elsewhere. In fact, distant sarcoma specialists may be willing to work with a patient’s local oncologist to oversee treatment or to provide insights and assistance during treatment.
When choosing a doctor or treatment team, one might consider the medical oncologist’s level of experience and sarcoma-specific training, as well as the resources and experts that are available (or unavailable) to that oncologist at the medical center. Is there a pathologist experienced in diagnosing these tumors? A surgeon who specializes in sarcomas? An orthopedic oncologist for bone sarcoma patients? A radiation oncologist with sarcoma experience? Are the nurses and staff accustomed to administering the complex chemotherapy protocols used to treat sarcomas?
Different Doctors, Different Options
The treatment options that patients are given can vary from one institution to the next. A diagnosing physician may not know about or tell his patient 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 draws attention to the fact that doctors are 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 disparities?, 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.5
Though not related specifically to sarcoma, the article might cause patients to consider more seriously having surgery at a high-volume sarcoma center.
Patients who pursue local treatment (without a dedicated sarcoma team) can be pro-active and seek out physicians to deal with their specific needs (for example: consulting with a particular surgeon who is known for limb salvage surgery or seeking out a radiation oncologist who offers proton therapy). Asking a physician for a referral to one of these specialists may speed up the appointment-making process.
Bone sarcoma patients should be aware that about 95% of bone tumors in the limbs can now be treated with limb-sparing surgery instead of amputation. It may be wise to seek a second opinion when amputation is recommended and to fully understand the benefits and risks of both techniques.
Questions to Ask at Diagnosis
1. What subtype of sarcoma has been diagnosed? Is there any doubt about the type and grade of tumor? [Consider keeping a copy of the pathology report.]
2. Has all the necessary testing been done to discover if the cancer has spread? [Consider keeping a copy of these test results.]
3. What is the treatment plan, and why is it recommended? [Reviewing the practice guidelines that are used at the top cancer centers in the United States can help patients understand and discuss treatment options.]
4. In your experience, what are the most common treatment side effects and the most important treatment risks for me to understand? What are the risks of refusing treatment?
5. Is there anything unusual or especially challenging about this case? Do you think I would benefit from a second opinion or consultation with a specialist?
6. To the medical oncologist: How many people with this kind of sarcoma have you treated? How often are sarcomas treated at the medical center where I will be treated?
7. To the surgeon: How many sarcomas in this location have you removed? How comfortable do you feel with this surgery – both getting rid of the tumor with wide margins and sparing my organ/limb function?
8. How long do the required tests and treatments usually take? How can I expect treatment to impact daily life…and for how long?
9. Is there a social worker, counselor or child life specialist here who could help me and my family cope with the practical and emotional challenges of cancer?
10. Adult patients: Is this type of cancer usually diagnosed in someone my age? How will age impact my treatment plan, if at all? [Adults with pediatric sarcomas may receive better care from a pediatric team.]
11. Patients with advanced disease or aggressive tumors: Is a stem cell transplant an option? Would I benefit from considering clinical trials now? Is there a research nurse who could help me research trials?
12. Patients with tumors in difficult locations (inoperable tumors or those that are difficult to resect with wide margins, head and neck tumors): Would Cyberknife® or proton radiation therapy be useful in this situation?
For more information: The American Society of Clinical Oncology
provides several important lists of Questions to Ask the Doctor.
Disease staging describes the severity of a person’s sarcoma based on the size and extent of the primary tumor and whether or not the disease has spread in the body.6 Disease stage is one of the pieces of information used in determining a patient’s treatment plan and prognosis. Patients who are given a frightening prognosis may not know how to proceed with such information. It is important to understand that statistics are only estimates – they are based on groups of patients in a similar situation. That means that there is always a range of possibilities for any individual. Some find that a poor prognosis inspires them to be fully involved and invested in their care, doing everything possible to improve their lives. A poor prognosis is a good reason to seek a second opinion so that the best treatment plan is chosen from the start. To read an encouraging article about prognosis statistics, see The Median Isn’t the Message.
A Note about Personalized Medicine and Testing
(an excerpt from this article)
There are many tests that come under the umbrella of personalized medicine. Examples are molecular profiling, genetic testing, and chemosensitivity and chemoresistance testing. One of the goals of such tests is to help the patient’s medical team explore and evaluate potential treatment options. Some of the tests use tissue samples taken during a surgery, while others may require new samples to be obtained. Patients and their families interested in personalized medicine should talk with their doctors about the value of doing such tests. Here are some questions to ask:
- Do you recommended any of these tests to patients? If not, why not?
- Which of these tests are appropriate for my type of sarcoma given the treatments that I have already undergone or might undergo?
- What are the benefits of the tests for me?
- Will any of the tests reliably determine treatment options that I might respond to?
- Where should I get the tests done?
- What are the costs involved?
- How long does it take to get the results?
- Will insurance cover the tests?
- What are the risks involved?
- Who will help me understand the results of the tests?
Communicating with the Medical Team
It is common for patients to feel nervous about talking with physicians. It is easy to stumble over words when using medical terms, describing physical symptoms and expressing fears. The good news is that patients can become more comfortable talking with doctors and nurses as they learn and gain experience. It is helpful to remember that, just as the doctor is an expert in medicine, the patient is the expert in her own symptoms, feelings and needs. Most patients feel empowered as they learn more about their health and practice speaking up about their concerns. Of course, some moments are especially difficult and emotional, but each medical conversation can be a learning experience that builds confidence and understanding.
Writing down questions before appointments, bringing a friend to appointments and writing down the doctor's answers can reduce stress and improve communication. Recording appointments is a great way to allow for the review of a doctor’s comments at a later time (and there are recording apps available for most smart phones). It can help patients and family members to read the practice guidelines that are used at the top cancer centers in the United States in order to understand and discuss their treatment options.
Don't be afraid to ask a doctor to define unfamiliar terms, provide examples, review concepts and clarify treatment recommendations. If you cannot establish an open and trusting relationship with your doctor, consider asking a loved-one to observe an appointment and offer insights, or see a different doctor if possible.
Improving Doctor-Patient Communication
Two helpful online articles include "'Doctor, Can We Talk?"': Tips for Communicating With Your Health Care Team" from CancerCare and "How to Prepare for a Doctor's Appointment" from the Lupus Foundation of America.
As treatment progresses, it helps to keep the lines of communication open. Most doctors welcome a call when families are concerned about symptoms, don’t hear about test results or feel that something is not right. Many doctors provide their e-mail addresses and respond quickly to patient’s messages.
It is important to talk to doctors and nurses about pain. Pain management is a very real need for thousands of sarcoma patients. Pain can interfere with physical and emotional healing and can limit a person’s ability to function and interact with others in a positive way. There are many helpful medical and complimentary approaches to dealing with pain.
Unfortunately, some cancer patients suffer from pain that is not managed adequately. Hospitalized patients who are in pain can ask to see the nurse in charge or page their physician at any time. Sometimes it takes talking with several different doctors and nurses in the hospital to see results. Patients who are dealing with chronic pain may feel that their oncologists do not spend enough time addressing their pain. It helps to remember that oncologists’ primary focus is on getting rid of cancer. Often the best help for chronic pain comes from a pain specialist, a doctor whose primary job is to manage pain. Patients can look for pain specialists / pain clinics themselves or ask a doctor for a referral. The pain specialist will need a patient’s medical records (x-rays, scan reports, physical therapy records, etc.) in order to fully understand the extent of the patient’s physical challenges.
Making a Way through Treatment
Most people have an idea of what cancer treatment is like based on what they have seen and read. As a result, the days leading up to treatment can be filled with a strange blend of fearful anxiety and hopeful expectation for a cure. Patients and their families can use some of this pre-treatment energy to discuss and handle a few important issues.
Fertility: Several sarcoma treatments pose a high risk to both men's and women's fertility. Sarcoma patients concerned about fertility should discuss it with a physician as soon as possible, even before treatment begins, in order to have access to the widest range of fertility sparing options. Men's options include sperm banking, and proactive patients usually have time to arrange for this procedure before treatment begins. Women's options are more complex but can still be discussed and considered. There are also fertility sparing options for children and adolescents. While the risk of losing fertility because of cancer treatments is very real, some sarcoma patients do go on to have healthy children without fertility sparing interventions.
Dental Work: Having a dental cleaning and taking care of necessary dental work is recommended before starting chemotherapy. Healing and fighting infection can be problematic during and after treatment.
The Basics of Clinical Trials: 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 trial. Clinical trials might also be worth considering later in the treatment process, so it is good to have an understanding of what they are and how they can help. One useful resource is the National Cancer Institute's Introduction to Clinical Trials.
Getting Through Treatment
"Don't let a long list of possible side effects overwhelm you. They don't all happen to everyone in the same degree." - Elizabeth
The sarcoma treatment experience varies greatly. Some patients will only need surgery, while others will need a combination of treatments that last for about a year. Those who only need surgery may be surprised at how long it takes to recover. Those who have chemotherapy and radiation therapy may be surprised at how much treatment is required. Sarcoma treatment and recovery can be a long road, one with a valuable goal…life without cancer.
Treatment side effects are one of the greatest concerns of sarcoma patients and their loved ones, and a detailed article about handling treatment side effects has been published in ESUN. There are many medications available to help with treatment effects, and taking these medications is not a sign of weakness. As one survivor writes:
"At the beginning I tried to be 'strong' and fight through the nausea, vomiting, fatigue and all the other wonderful side effects, but then I realized there is no reason to fight through it. TAKE MEDICATIONS to help RELIEVE THE EFFECTS!!! If one doesn’t help, ask for another." - Cari
Some of the therapies used for sarcomas can potentially damage vital organs. The good news is that there are several protective agents that can spare organs from the harmful effects of radiation and chemotherapy. These agents exist for the heart, kidneys, bladder, liver and mucous membranes.7 Patients can ask a physician about these agents and check with nurses administering chemotherapy to ensure that the appropriate protective agents are being administered.
A wise and caring young lady once wrote that comment on my blog after I had gone through some absolutely horrible rounds of chemo. I know how hard it is to look past the pain and misery of the here and the now, but I'm quite certain (living proof, in fact) that people do get back on course and go on to live full, happy, and productive lives. - Dave
Rounds and More Rounds: Each patient will need a different amount of time to safely and comfortably recover from each treatment. Amazingly, some people regularly work through treatment, while others need much more time to rest. In general, it gets harder to recover in the later rounds of chemotherapy, and exhaustion tends to increase with later radiation treatments. Some treatments put the body at risk of infection, so doctors recommend steps to avoid exposure to bacteria and viruses. Still, life can develop a rhythm during treatment that allows for a number of planned activities.
Outpatient Treatment: Some people, especially adults, spend a great deal of time at home while undergoing sarcoma treatment. They go to a medical center to receive treatment and then are released to spend a night, a week or more at home before returning for their next treatment session. Some patients even have the option of leaving the hospital wearing a “chemo backpack” or having chemotherapy administered at home with the help of a home healthcare aid.
There are a couple of challenges that patients encounter when receiving outpatient treatment. First, it can be difficult to juggle the many appointments involved in outpatient care. Doctors come to see inpatients, but outpatients often need to visit several doctors and have several procedures done in one day. This leaves a sick patient to find his way from department to department while trying to stay on schedule. The hospital staff can help, especially when a patient who has several appointments is delayed.
Outpatients will also deal with medical questions and side effects when there is no medical team nearby. Some will have a hard time knowing when to call a doctor or return to the hospital. It is important to follow the doctor’s written guidelines about returning to the medical center when certain symptoms arise, especially a fever over a given threshold. When in doubt, most patients can only benefit from calling a doctor and discussing their concerns.
Inpatient Treatment: Some chemotherapy protocols are best administered in the hospital where patients can be monitored and cared for by medical professionals. Staying in the hospital frees patients from some of the burdens of treatment and can make it easier for doctors to manage any side effects.
Hospitalizations: Some patients will spend many weeks in the hospital before treatment ends. Even those who receive chemotherapy and radiation therapy as outpatients are likely to be hospitalized for surgery and for the occasional management of side effects.
During hospitalization, most people miss the comforts and distractions of home life. Those staying on pediatric floors may have access to electronic games, playrooms and child-services staff. Patients who aren’t offered entertainment options at the hospital can benefit from bringing items from home, including: books, a journal, a laptop or tablet, crafts or hobby materials, games, music, etc. Some people take up new hobbies, work on projects to give to others, or just listen to music. And most patients have days when sleeping is the best thing they can do.
In preparation for unscheduled hospitalization, it helps to have a bag ready with a list of the things to pack in the bag before leaving. Comfort items like a pillow, slippers and earplugs are a great idea. Consider bringing a medications list and documents that have been used to track recent symptoms, treatments and medical concerns.
Patient Rights and Responsibilities
Many hospitals and doctors' offices publish a guide to patient's rights and responsibilities. This document addresses important topics such as respect, patient participation in care, privacy and pain management. A few informative samples can be found at Memorial Sloan Kettering Cancer Center, Dana-Farber Cancer Institute, and M. D. Anderson Cancer Center.
Nutrition and Cancer Care: There is a great deal of public interest in the role of diet and nutrition in cancer care. Some patients aim to improve their health and well-being by making dietary changes and taking nutritional supplements. These efforts should always be discussed with the patient’s oncology team.
Unfortunately, much is unknown about the effects of diet and supplements on cancer, especially when a patient is in treatment. In fact, some traditional nutritional advice does not apply during certain treatments. For example, there may be risks associated with eating some raw fruits and vegetables, which are otherwise healthy and considered to be “cancer fighting,” during cancer treatment. And some dietary supplements can interfere with the effectiveness of chemotherapy and radiation therapy. At many medical centers, nutritionists are also available to help cancer patients deal with dietary questions and eating difficulties. They can even work with young children and teens to explain issues in age-appropriate terms and to help them cope with changes in appetite and diet.
More about Nutrition during Treatment
Coping Well and Strengthening Relationships
Coping with cancer can be stressful. Fortunately, each person dealing with a new sarcoma diagnosis has already developed skills for managing stress, anxiety and fear. In fact, most people understand and rely on several of the coping skills that are associated with a positive adjustment to cancer diagnosis.3 These skills include:
- Maintaining a fighting spirit
- Maintaining a positive focus
- Cognitive restructuring
- Emotional expression
There are many effective paths through cancer. Patients and caregivers can choose to focus on their strengths, to recall challenges they have overcome in the past and to cope in the ways that work best for them as individuals. Those who tend to be analytical may ask more questions, research their disease and worry more than others think is necessary. Those who tend to be melancholy may not be as upbeat as their loved ones think is best. And those who tend to be optimistic may surprise people with their positive spin on events that are difficult for others to watch. A 2002 review of research studies concluded that patients' attitudes do not appear to be related to cancer recurrence or survival rates.8
A 2009 study9 adds one note of caution concerning patient attitudes and treatment outcomes. The study found that patients who show signs of depression may have a slightly increased risk of mortality. This potential risk provides good reason for doctors, patients and caregivers to watch for signs of depression in the patient and to deal with them proactively.3
Perhaps the most important question to ask of oneself about coping is, “Do I feel that I am coping well right now?” Patients and caregivers who realize that they want to deal better can take steps to develop more coping skills or talk with a counselor for assistance.
Additional coping strategies to consider3 include:
- Lifestyle improvement
- Re-evaluating priorities
- Engaging in activities that have been put off (travel, trying new things, etc.)
- Advocating for oneself
- Asking others for help and support
- Present-moment focus
- Prayer or meditation
- Using complementary medicine
- Artistic creation/expression
- Positive self-talk
Present-moment focus is a common coping method among people dealing with sarcomas. Members of online support groups write about learning to take one day, even one moment, at a time. They come to savor everyday victories, celebrate good news wholeheartedly and nurture hope.
Present-moment focus is utilized more formally in mindfulness meditation, a practice that has been shown to reduce stress and increase quality of life for patients with many diseases, including cancer. Mindfulness practice helps people to become more aware of their moment-to-moment experience and to be more compassionate toward themselves and others. According to Susan Bauer-Wu, PhD: “It’s so very important for people who have cancer or any other serious illness to be in tune with what they’re experiencing, rather than shut off from it, which can so often be the case. Mindfulness becomes a foundation to help patients make good decisions and navigate all they have to go through.10” Mindfulness meditation or mindfulness-based stress reduction classes are available at many major medical centers, often through a department of integrative medicine.
Asking for and accepting help: Everyone has been touched by cancer in some way. When a cancer diagnosis is made, people want to help. It is a good idea to channel a community’s immediate response into action. While the family prepares for treatment, they can also prepare to accept support in some of the following ways:
- Create a support calendar and invite friends to sign up to bring meals, come for visits, and help with daily tasks and transportation.
- Establish a bank account or online campaign page to allow friends to express their support with donations.
- Ask friends to help with childcare or schedule a sitter regularly to allow adults to handle medical issues, rest or escape for a while.
- Gather a pediatric patient’s friends together for a sleepover.
When a family accepts help from the start, their loved ones feel like an important part of a support network. The early efforts of that network will teach everyone involved what the patient’s family needs and how their friends can best help. If life becomes more challenging as treatment progresses, an established, active support network can be invaluable.
More about Coping Skills
ESUN contains a helpful article about Coping with Sarcoma. Learn more by consulting the following materials: Coping with Cancer, the Coping Checklist for Patients and the Coping Checklist for Caregivers.
Navigating Changing Relationships
Relationship changes during cancer are universal and are a popular discussion topic among sarcoma patients and caregivers. Families often find that their closest relationships are strengthened and stressed at the same time. Patients tend to struggle if they feel forced to depend on family members more than usual. Caregivers may find it difficult to adjust to a new role that can require a significant amount of time and resources. Couples often notice that their relationships feel less balanced and more complicated. Children and siblings are impacted in a number of ways and can benefit from age-appropriate coping support.
Strengthening Family Bonds
The whole family benefits when each member feels supported. There are helpful articles written to provide caregiver support, and parents will be encouraged by the Guidelines for Parents of a Child with Sarcoma. Cancer.net provides excellent information to support children of parents with cancer , siblings of children with cancer and children with cancer.
Friendships can change dramatically after a cancer diagnosis. Some friends step up to offer valuable support, while others step back or distance themselves. It seems that some people are confident that they can handle a friend’s illness and that they have something to contribute, while others feel unable to help or to sustain a relationship that is threatened by a frightening disease. Cancer is also a major ongoing ‘event’ that can overshadow other aspects of a friendship and expose differences in values and priorities. As individuals grow and learn through the cancer experience, their friendships will inevitably change.
Relationships during a medical crisis require work and grace from everyone involved. Even the best friend can say the ‘wrong thing’ during such an emotional time. When patients have the energy, maintaining and strengthening friendships can actually be a life-affirming investment during treatment. Patients can help their loved ones to understand and care by sharing their thoughts and experiences. They can create a safe space for conversation by welcoming questions and telling people which topics of discussion are okay. They can lead by example, showing others how to use humor and honesty to handle issues when communication is difficult. And they can invite their loved ones to talk about life outside of the cancer experience, to share their daily joys and sorrows.
It can be heartbreaking when friends disappear during cancer treatment, and it helps to focus on the friends who stay. In the end, cancer survivors look back with great appreciation for the incredible friends who were there for them during treatment. Those friendships grow to be deeper and more meaningful than before.
Handling the Expectations of Others
It may be impossible for a family dealing with sarcoma to continue fulfilling commitments and participating in activities that they valued before cancer. Lowering expectations of oneself and redefining priorities during treatment are often necessary, especially when it comes to pleasing other people and meeting their needs.
As shocking as it is, some friends and family members will not understand the drastic life changes that come with a cancer diagnosis. They may voice concern, sadness and even frustration with these changes. Patients and their families might do well to distance themselves from friends who demand too much during treatment.
Pediatric and Young Adult Issues
Children and young adults diagnosed with cancer are dealt a harsh blow during a critical time in life. They may start treatment feeling determined to handle their daily responsibilities just as before. While some patients are able to achieve this goal, many will need to slow down and do less than planned during treatment. This can be a frustrating and frightening development, especially for those with classes, school debts, jobs, children and other major responsibilities. Young sarcoma patients also express that it can be hard to watch their friends move forward in life while they feel like they are standing still, facing mortality.
It is important to emphasize that sarcoma treatment, even for those in the prime of life, can be grueling. Treatments for high grade sarcomas are some of the strongest cancer therapies in use today, and making it through treatment is an incredible achievement. The hope is that young patients will be able to pick up again, near where they left off, when the cancer is gone, and that they will have a chance of living a long and full life, free of cancer.
Adolescents and young adults dealing with cancer may struggle to maintain their independence and define relationship boundaries after diagnosis. Loving parents and relatives are often eager to step in and help patients with everything, from cleaning the house to making major medical decisions. Young people tend to react in similar ways to this shift of power and control in their lives. Some are just thankful for the help; many are confused by mixed emotions; and some feel angry. Parents and caregivers often attempt to meet a patient’s obvious needs while tip-toeing around the patient’s frustration and trying to honor her boundaries. Talking about these issues can be challenging but helpful for families. And some young people feel a lot better after sharing their thoughts and experiences with their peers in online support groups.
For Young People with Cancer
Cancer.net provides excellent information to support children with cancer. Also see Nine Tips for Talking with Kids about their Cancer. There are also organizations focused on providing cancer support for children, adolescents and young adults.
The Power of Support
At one point or another in the process of treatment and recovery, most sarcoma patients and caregivers feel the burden of unanswered 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 experience is like?"
Online Support Groups: People with sarcoma often feel alone where they live, but the Internet can connect them instantly with others who feel the same way. Patients can join in discussions with survivors who have dealt with the same subtype of sarcoma, the same chemotherapy protocol, and the same surgery. Connecting this way gives patients and caregivers the opportunity to discuss the rare challenges that they face, helping them to feel understood, informed and empowered. A few resources that can be found in sarcoma support groups include:
- Encouragement and insights from people who have been through every stage of the sarcoma journey – and a vision of what life can be like after treatment
- The names of doctors who have treated patients in a similar situation and information about the expertise at various sarcoma centers
- Practical tips about traveling to sarcoma centers - where to stay, what services are available to help travelers, what the weather is like, and help with the process of getting an appointment
- Information about the effects and outcomes of various surgical options from people who have had those surgeries
- Helpful suggestions about dealing with the side effects and daily challenges of treatment
- Answers to questions about specific clinical trials and first-hand experiences of patients who are participating in those trials
- Connections that reduce loneliness, including opportunities to meet other patients and caregivers in person
Sharing Experiences in an Online Sarcoma Support Group
I Wish I Had Known Before I Was Diagnosed….
“I wished I had known about the emotions that you go through and that it is normal to go up and down and all around....” – Karen
“I wish I had known when I was diagnosed that it is not all up to the doctors to ‘take care of me,’ and that I had full responsibility to take care of me, too.” – Elizabeth
“I wish I had known when I was diagnosed that the two years of treatment that seemed like an eternity back then would seem like a blink of an eye nearly twenty years later. I wish I had known that there were going to be many years left to enjoy life and that I had not tried to cram so much into those two years. I wish I'd taken it easy! I wish I'd let "regular life" stop for a while, felt okay with that, and focused on getting better instead of focusing on trying to do everything I did before the cancer.” -Kara
“I wish I had known the love, compassion, and humanity of all of the people around me, known and unknown.” –Kevin
“I wish I had known when I was diagnosed how strenuous the regimen was for Ewing's Sarcoma. I had no idea all my treatment would be considered inpatient and take over a year.” –Cindi
“I wish I had realized I shouldn’t push people close to me away just because they don't understand.” – Kelly
“I wish I had known how to ask more detailed questions. By the third recurrence, I finally learned to use simple but leading questions: ‘Can you explain more about that?’ and ‘What do you mean by that?’ and ‘I need more details to understand.’"- Elizabeth
“I wish I had known that it is ok to be afraid and to be angry! It is ok that you cannot and will not be able to do things that others can!” -Aimee
“I wish I had known that sarcoma is much harder than I thought, mentally and physically, both on me and my loved ones. I never knew how much I meant to others until now.” –Rachel
“I wish I had known when I was diagnosed that there would be friends and family that could be there for me and then those who could not be.” – Cathy
“I wish that I'd known about others with my same type of cancer who had made it.” –Marianna
Local cancer support groups can also be helpful for patients and their loved ones. Groups that are specific to sarcoma are rare, but general cancer support groups for adult patients, young adult patients, pediatric patients and caregivers may be available. These groups foster caring discussion about individual journeys and common cancer experiences. Local support groups can be found by talking with medical center staff or checking with organizations like the Cancer Support Community.
A word of caution: Because sarcoma patients may deal with especially aggressive treatments and tend to be younger than other cancer patients, they might feel different or isolated in general cancer support groups. Patients who are uncomfortable joining one of these groups might ask a loved-one to attend to receive support that can help the whole family.
Peer-to-peer support: Those who don't feel comfortable joining a group of people with sarcoma may be interested in talking with one person who has dealt with a similar situation. Some cancer centers offer a peer support program, and Imerman Angels offers to connect each patient around the world with a similar survivor.
"Personally, I never wanted to go to a local 'support group' when I was actively battling sarcoma, as I just assumed (wrongly) that it would be a group of whining, complaining, and crying people, and I didn't need or want that. Had anyone tried, I'm sure someone could have sold me on the idea of a 'peer program' and the chance to talk with someone who had been through this all before. I think peer support is particularly important because the fear of the unknown can be so overwhelming. For me, having my oncologist explain what I might go through was far different than listening to other patients in the same sarcoma ward tell me what they had experienced. Were it not for my new sarcoma buddies, I may well have panicked during (and especially after) my first cycle of chemotherapy (which did not end without incident)." - Dave
A Closing Invitation
Much of the information in this article is derived from two types of experience - personal experience and support group experience. Personal experience is usually gained at a cost. For example: a patient might learn about pain management because she has suffered, talked to a doctor without success, and finally decided there must be a way to get relief. A patient might learn about specific treatment options after consulting with several physicians and doing a great deal of research. A patient might learn the value of second opinions because he did not seek one and now wishes that he did. A patient might learn, slowly and surprisingly, that life really can go on for a decade after sarcoma. This kind of personal experience is not easy to come by, especially when a diagnosis is new.
In a support group, patients learn from the experiences of others. With open minds, they can absorb a great deal of knowledge and wisdom. Of course, sometimes people share information that isn't helpful. So it is good to enter a support group determined to find HELP and not to be distracted or dismayed. When a person joins a support group with the desire to learn and to help, to be kind to himself and to others, the experience gained is transformational. [On a personal note, after nearly ten years of online discussion about sarcoma, it feels like I have gained thousands of experiences, tiny pieces of the best and worst moments in other people's lives, and I have learned so much from those moments.]
People come and go in sarcoma support groups; what matters is that they find what they need for the journey. Whether you join for a few weeks, months or years, it can really, truly help. Personal connection makes any new experience a little easier to bear.
Last revised: 3/2014
Last medical review: 3/2014
The author is grateful for the insights and thoughtful contributions of Elizabeth Goldstein-Rice, Mimi Olsson, Elizabeth Munroz, the ABC Survivors support group and the Team Sarcoma Facebook group.
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