Suggestions for those newly diagnosed with sarcoma cancer:
Join the Association of Cancer Online Resources (ACOR) sarcoma list serve and open up dialogue with other sarcoma patients, survivors, and family members concerning treatment options, diagnosis, helpful advice, and emotional support. Participation on the list is helpful and at no cost to you. If you are unable to join the list, ask a trusted friend to do so on your behalf: http://www.acor.org/
Research doctors, hospitals, and targeted cancer centers. Seek an opinion from a sarcoma center or doctor who has considerable experience treating sarcoma cancers. Sarcoma can be very difficult (different) from other cancers in how it responds to treatment. Therefore it is wise to seek the opinion of someone who is experienced in treating this specific form of cancer. Many well-qualified and highly seasoned oncologists have never had a patient with a diagnosis of sarcoma. Don’t assume that your doctor knows sarcoma. Ask him or her how many sarcoma patients he/she has treated throughout his/her practice and within the last year.
If a sarcoma specialist is not available in your area and travel is out of the question, ask your doctor to consult with a sarcoma specialist elsewhere. Often times, treatment can be administered by your hometown oncologist with follow-up and direction being offered from a sarcoma center. Check out our list of sarcoma centers available in the United States.
Consider participating in a clinical trial. Make sure to talk with your doctor about traditional treatments for sarcoma as well as about any possible clinical trials that may be available. While trial participation is not for everyone, for some, such trials may provide access to helpful new treatments and/or delivery mechanisms not otherwise available. Please note that criteria for trial participation may vary. As such, ask your doctor about options before starting treatment. For some trials, enrollment is limited to those who have had no previous treatments. See our Links and Resources page under the section titled "Cancer Clinical Trial Information" for more information on clinical trials.
Find a personal advocate/someone whom you trust to carry out your wishes and provide emotional support for you throughout your treatment. This can be a friend, loved one, or co-worker. It is also strongly suggested that if possible this person be willing to act as your medical advocate or defender in the event you are unable to strongly make your own case. Share your feelings with this person. If you are ill or upset, it can be helpful to have someone with you during meetings with your doctor to remember exactly what was said. Having this person serve as your “secretary” (by taking notes during meetings with your health care providers) can help you make sure valuable information is not lost.
Join a local support group. Many of the sarcoma centers have sarcoma specific support groups. If you do not seek treatment in or live in any of these areas, look into other more general cancer support groups in your community. Also, don’t minimize the impact that an online support group may offer (especially for people in rural areas). There are also special support groups for loved ones and parents of children with sarcoma.
Prepare a written list of questions for your doctor or nurse prior to each meeting. It can be difficult to remember each question when emotions run high or after receiving news about your treatment’s progress. Write all medical appointments on a calendar along with your treatment schedule and a list of all the medications you are taking (and the dosage) and keep this with your list of questions. Bring it to all of your appointments. This will make it easier to refer back to information if necessary when talking with your doctor or nurse.
Don’t be intimidated or afraid to ask anything. Your doctor works for you. And you have a right to fully understand all of your treatment options and any potential side effects associated with your choices.
Ask for clarification on any tests or procedures that you don’t understand. “Are they necessary?” “How can they help you?”
Get copies of your x-rays, scans, or test results. Store them in a safe place so that you can refer back to them if necessary or bring them with you to seek a second opinion.
Do not assume that no news is good news. Learn about your own health condition and treatment by asking your doctor and nurse and using other sources.
Share the Amschwand Sarcoma Cancer Foundation web site and others that you find to be helpful with your physician.
Remain involved and proactive in your treatment. Research shows that involved and engaged patients do better than those who take a more passive role.
Research cancer-fighting diets and optional minerals/supplements. Talk about these options with your doctor or a dietician.
Read relevant books: medical, science, support, inspirational, religious, spiritual, complementary (mind/body), informational, and dietary. Check out the ASCF recommended reading list.
Remember that you have choices. You have the right to choose your doctor, hospital, and course of treatment.