After a diagnosis of sarcoma, choosing the right physician can be a difficult and confusing process. It is important to find a doctor who has experience treating the particular type and stage of cancer you have. This is especially challenging with sarcomas because specialists are difficult to find and often are not located close to home. Visit our list of helpful contacts and resources to assist you in finding a sarcoma specialist that’s right for you. The Cancer Information Service (1-800-4-Cancer) can also assist you with treatment facilities including cancer centers and other programs in your area that are supported by the National Cancer Institute (NCI).
Several approaches can be taken when a sarcoma specialist is far from home. If you have available financial and social support and are physically strong enough, traveling to one of the sarcoma treatment centers may be the right choice for you. If temporarily moving to a treatment center is not an option, it may be worth your time and money to make a consultation appointment at a sarcoma center. In this way you can obtain treatment advice from a sarcoma specialist and bring this home to your local oncologist for implementation. Sometimes consulting oncologists will write up treatment protocols that your local oncologist can use to guide your treatment. If traveling is not an option at all, have your local oncologist consult by phone with a sarcoma specialist for treatment advice and protocol.
In addition to finding a physician who has experience treating sarcoma, it is important that you feel comfortable and confident with your physician. Treating sarcoma can often be a long and arduous experience. Finding a physician who is professionally competent as well as an empathetic and effective communicator is essential. Being treated for cancer is a vulnerable and often terrifying experience and being heard is a key aspect of effective treatment. A good oncologist should be open to questions, interested in concerns, a good listener, and not in a rush.
MEMBERS OF THE HEALTHCARE TEAM
Medical oncologist: A medical oncologist is a doctor who specializes in treating cancer with a variety of drugs often referred to as chemotherapy. Medical oncologists manage chemotherapy in both inpatient and outpatient settings and are often the physicians coordinating and heading up care. Medical oncologists are board certified from the American Board of Medical Oncology or the American Board of Internal Medicine.
Surgical oncologist: A surgical oncologist is a surgeon who specializes in the surgical management of cancer. There are many types of surgical oncologists and they are usually classified according to the part of the body that they operate on. For example, a surgical thoracic oncologist is a surgeon who operates on cancer in the chest and lung area. Your surgeon should be board-certified and experienced with the type of sarcoma that you have.
Radiation oncologist: A radiation oncologist is a physician who specializes in the treatment of cancer by using radiation therapy. Qualified radiation oncologists, certified by the American Board of Therapeutic Radiology, use radiation rays to destroy cancer cells or alter their metabolism so as to hinder their ability to function normally. Radiation therapy is used on cancers, including sarcomas, where there is a selective ability for the radiation to destroy the cancer cells while allowing the nearby adjacent normal cells to repair themselves from the injury.
Oncology nurses: Nurses are a very important part of the cancer healthcare team. Nurses work in the hospital setting as well as the outpatient clinic and doctor’s office settings. Oncology nurses have specialized training in delivering chemotherapy, handling intravenous lines, managing side effects from treatment, managing pain and providing counseling and education. Most of the time it is the nurse who delivers the chemotherapy and other medications ordered by your oncologists. Nurses have a wide variety of skills and expertise and are often the members of the healthcare time that patients have the most access to during their treatments. Nurses are valuable resources and can answer many questions.
Pathologist: The pathologist is a physician with specialty training in the microscopic examination of tissue or cell samples (the biopsy). He/she first determines whether a tumor is benign or malignant (cancerous). If the latter, the tumor is then classified (type) and graded (aggressiveness). It is only when this examination is complete, that the clinical team (surgeon, medical oncologist and radiation oncologist) can develop the most effective treatment for optimal outcome. Therefore, it is vitally important that the pathologist has special training and skill in the evaluation of sarcomas. Since these are rare tumors (1% of all cancers) few pathologists have developed high-level expertise in this subspecialty. It is crucial that one of these nationally recognized consultants reviews your case to render a second opinion. If the pathology diagnosis is incorrect or inaccurate, the therapy you receive may be less than optimal.
Pharmacists: Pharmacists are licensed to prepare and dispense drugs. In addition to preparing medications, pharmacists have a tremendous amount of information on how drugs work, their side effects and potential interactions. Pharmacists can instruct you on the proper and optimal way to take medications and how to manage side effects.
Social workers: Social workers can be a gold mine of information for a cancer patient. Not only are they trained in counseling but they have a great deal of practical information to assist you during your care. Social workers have information on local support groups, community services and government support. Navigating the application process for disability, such as Social Security Disability, can be confusing and difficult to access. Social workers are invaluable in assisting patients with the application process.
Psychiatrists/Psychologists: A psychiatrist is a medical doctor who specializes in providing psychological counseling and support. Psychologists and other types of counselors provide similar services. Dealing with cancer can be a confusing and emotional time. Talking with a therapist can be helpful in dealing with the anxiety and depression that often surround a diagnosis of cancer. For a referral, ask your oncologist, call your medical plan, or contact a social worker who works with cancer patients.
Dietitian: Keeping up your nutrition is very important for your health during cancer treatments. Many cancer treatments cause side effects such as nausea, diarrhea and mouth sores, which can impede eating, and cause unwanted weight loss. A dietitian can make dietary suggestions for particular side effects as well as provide information on maximizing protein, vitamin, and calorie intake.
Spiritual Care/Clergy/Chaplain: Most hospitals have spiritual support resources for patients and their loved ones. Spiritual support can be very comforting when coping with a diagnosis of cancer. Ask your hospital about their spiritual support services or contact your personal support system for help during this difficult time. Many clergy will make in-hospital or home visits for patients fighting serious illnesses.
You, the patient, and your support system: Do not forget that you too are an important member of the healthcare team. Make sure that you take an active role in your treatment decisions and let the healthcare team know when you do not understand information, disagree with treatment choices or feel left out of the treatment making process. Let your healthcare providers know who you are, what is important to you and who is important to you. You are a unique and special person and your healthcare team should know that you are not just another cancer patient.
TALKING WITH YOUR DOCTOR
As an integral member of the healthcare team it is important that you take an active role in your care. The following is a list of helpful suggestions for communicating with your physician that will empower you as an informed consumer.
1. Make a list: Before going to any doctor’s appointment, create a list of questions that you would like answered. Enlist the help of family and friends so that your questions are comprehensive and well articulated before an appointment. Bring this list with you to your appointment and refer to it as needed during your appointment to make sure that you don’t forget to discuss anything. Remember, no question is a dumb question especially when it comes to your own health.
2. Bring a companion: Bring a family member or friend with you to appointments, tests and treatments. It is often difficult to concentrate and absorb information when you are anxious, afraid or not feeling well, therefore your support person can ask questions and take notes. It may be helpful to designate one person as your companion so that the healthcare team gets to know them and there is continuity with your appointments.
3. Record information: Write down answers that you get during your appointment including exact drug names, side effects and statistics. This information will be useful when doing research on treatments and will assist you in becoming a sophisticated cancer-care consumer. Taping a meeting or conversation with your physician may also be helpful. Ask your physician for permission to tape your interactions.
4. Helpful questions to ask:
- What are my treatment options? You should be given all treatment options before planning an approach to therapy.
- What are the benefits of this treatment?
- What are the risks of this treatment?
- Does the pathologist who made the diagnosis of my sarcoma have expertise in bone and soft tissue tumors?
- Was a second opinion obtained on the pathology specimen (biopsy)?
- Who are the nationally recognized pathology experts in sarcoma and how can I obtain a second opinion from them?
- How successful is this treatment for the type of cancer I have?
- How many similar cases have you treated?
- What type of long term and short term side effects might I experience?
- What types of medications will I receive and what are they for?
- Are there side effects to these drugs?
- How should I expect to feel?
- How long will I receive the treatments?
- Who will be giving me the treatments and where will I receive them?
- Will I need a special intravenous line to receive the medications?
- Will I need to be hospitalized?
- Will I need help at home?
- What is the best way and best time to contact you if I have further questions?
- Are there foods and activities I will need to avoid during treatment?
- What types of symptoms or side effects should I report right away?
- Will my insurance cover the treatment-related costs?
5. Important information to share: Many times healthcare providers are busy and do not take the time to ask important questions during a visit. Because of this it is essential that you voluntarily share certain types of information with them.
Allergies: Always make sure your physician and nurses know if you have allergies. This includes allergies to such things as latex, tape and other adhesive material, and betadine/iodine, as well as to specific medications. If you are hospitalized make sure you have an allergy band on your wrist and that the nurses and physicians check it before giving you any type of treatment.
Medications: Share all medications you are taking, even the ones that you take only occasionally. Medications include prescription drugs, over the counter medications such as aspirin, and herbs and supplements such as vitamins. Many medications interact with one another and it is important that your healthcare team knows everything that you are taking so that adverse reactions can be avoided.
Young children/Pets/Living arrangements: Let your healthcare team know if you have small children at home. Young children are susceptible to childhood infections such as chicken pox that can be very dangerous to you during treatment if your immune system is lowered. Pets, especially cats, can carry the organism toxoplasmosis in their feces that can cause harmful infections in people with weakened immune systems. For this reason, do not empty litter boxes during treatment. Have another family member or a neighbor take care of this household chore for you to reduce your chances of exposure. Dust from construction can also kick up harmful germs and should be avoided if at all possible.
Changes in body function: Report any changes in body function such as headaches, changes in bowel habits, bleeding, and shortness of breath with your healthcare provider.
Lifestyle habits: Let your healthcare team know if you smoke, drink alcohol or use recreational drugs. This information is needed to ward off any complications that may occur as a result of these habits interacting with your disease and treatments.
SEEKING SECOND OPINIONS
Seeking a second opinion is not taboo or something to be embarrassed about. In fact, seeking a second opinion is quite common among healthcare consumers and most oncologists welcome colleagues’ opinions. By seeking a second opinion, a diagnosis will often be confirmed and you may gain greater understanding of your diagnosis and treatment options. Because sarcomas are very rare and difficult to diagnose, seeking a second opinion from a sarcoma specialist is invaluable. Many oncologists routinely send pathology slides to another pathologist to confirm the diagnosis, especially with rare cancers. Ask your oncologist if this has been done. Fine differences in a diagnosis can have major implications for prognosis and treatment options. In some instances third opinions may be necessary.
In addition to seeking a second opinion for diagnosis and treatment information, a second opinion may be warranted if you are having difficulty creating a positive working relationship with your oncologist. Personality conflicts do occur between patients and physicians and staying in a difficult relationship may only hinder care. Like all humans, physicians have varying levels of communication skills and one oncologist may be much more therapeutic than another. Remember that you are not stuck and you do not have to stay in a relationship that is not right for you. Having cancer is tough enough; having a difficult relationship with your physician is an additional strain that you do not need.
American Cancer Society Resources
Talking with your doctor
Choosing a Doctor and Hospital
The National Coalition for Cancer Survivorship
The Cancer Survivor Toolbox?
Teamwork: The Cancer Patient’s Guide to Talking with your doctor
Oncolink: University of Pennsylvania Cancer Center
Preparing for your first oncology consultation
Cancer Care, Inc.
A Helping Hand Resource Guide
Benjamin, H.H. (1987).
From victim to victor: For cancer patients and their families.
Dell Publishing: New York.
Benjamin, H.H. (1987).
The wellness community: Guide to fighting for recovery from cancer.
G.P. Putnam’s Sons: New York.
Bruning, N. (1985).
Coping with chemotherapy: Up-to-date, authoritative information you can trust-from experts and from someone who’s been there.
Ballantine Books: New York.
Cancer Care, Inc. (1998).
A helping hand: The resource guide for people with cancer.
Cancer Care Inc.: New York.
Groopman, J. (2000).
Second opinions: Stories of intuition and choice in the changing world of medicine.
Viking: New York.
Morra, M., & Potts, E. (1994).
Choices: The new, most up-to-date sourcebook for cancer information.
Avon Books: New York.
Nessim, S., & Ellis, J. (1991).
Cancervive: The challenge of life after cancer.
Houghton Mifflin: Boston.