Karen Wyckoff Rein in Sarcoma Fund
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Karen Wyckoff Rein In Sarcoma Fund
A Fund for Sarcoma Cancer Research, Education and Survivor Support
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Suggestions for those newly diagnosed with sarcoma cancer
1) Join the Karen Wyckoff Rein in Sarcoma Fund Support Network. The Network is designed to provide increasing resources and support for sarcoma patients, survivors and loved ones in the upper midwest. You will also be sent updates on KWRISF support events.
2) 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/.
3) 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 experienced 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.
4) 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. See the KWRISF list of Cancer Centers available in the United States.
5) 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 family member, 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.
6) Join a local support group. Many of the sarcoma centers have sarcoma specific support groups. If you do 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.
7) 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 you {your} appointments. This will make it easier to refer back to information if necessary when talking with your doctor or nurse.
8) 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.
9) Ask for clarification on any tests or procedures that you don’t understand. “Are they necessary?” “How can they help you?”
10) 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.
11) 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.
12) Share the Karen Wyckoff Rein in Sarcoma Fund (www.reininsarcoma.org) web site and others that you find to be helpful with your physician.
13) Remain involved and proactive in your treatment. Research shows that involved and engaged patients do better than those who take a more passive role.
14) Utilize the services of a registered dietician to find the best diet for you and to help with the effects of treatment. Talk about nutritional supplement options with your doctor or a dietician.
15) Reach out to others for help - family, extended family, friends, others who may want to help. Utilize the CaringBridge™ - RIS partnered web site - "A place to heal, celebrate and share". CaringBridge™ is a nonprofit organization offering free personalized Web sites to those wishing to stay in touch with family and friends during significant life events. To learn more visit RIS-CaringBridge.
If you allready have as CaringBridge wedsitre and would like to share your CaringBridge™ web site with other sarcoma patients, list this web site (http/:www.reininsarcoma.org) on your CaringBridge™ site and
- Provide your CaringBridge™ personal web site address for inclusion in a new CaringBridge™ RIS Sarcoma Connection page on this web site.
16) Read relevant books: medical, science, support, inspirational, religious, spiritual, complementary (mind/body), informational, and dietary. See the Aschwand Sarcoma Cancer Foundation recommended reading list for initial suggestions.
17) Remember that you have choices. You have the right to choose your doctor, hospital, and course of treatment.
(Our thanks to the Aschwand Sarcoma Cancer Foundation for much of the material in this section)
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