Patient Advocacy
Questions to Ask Your Sarcoma Specialists
A guide to help you prepare for appointments and advocate for the care and answers you need.
Questions to Ask Your Sarcoma Specialist
During Your Oncology Appointments
Understanding your diagnosis, treatment options, and next steps
- What stage is my tumor, and what is its mitotic rate?
- Should genomic testing or other advanced testing be done on my tumor now? If not, why not? If so, how do we get my tumor tested? (See Note Below)
- Do I need chemotherapy now? Is radiation therapy another option for me? What are the pros and cons of radiation therapy?
- Is immunotherapy a treatment option for me?
- What chemotherapy regimen do you feel is best for me — single agent or the combination of two or more agents? What gives me the best chance to attain No Evidence of Disease (NED) status and a lesser chance of a recurrence?
- Is one chemotherapy agent better than a combination to help reach NED status? Is targeted chemotherapy an option for me?
- I am interested in finding out all of my treatment options and the pros and cons of each in terms of the potential for a positive result, short-term and long-term, and the potential side effects.
- How often will I be meeting with you during my treatment and what types of testing — blood work, imaging studies or biopsies — will be necessary?
- What are my treatment options if my tumor does not respond to the selected treatment protocol?
- Information for potential discussion with your oncology care team from the American Society of Clinical Oncology: Local Ablative Therapies to Metastatic Soft Tissue Sarcoma
- What if my tumor recurs locally or metastases develop after my initial treatment — what will my treatment options be then?
- I would like an Integrative Medicine consult in order to learn about proper nutrition and other complementary therapies during my chemotherapy treatment and after treatment (maintenance regimen).
- As I enter the treatment phase, how can I ensure that I get the ongoing support needed for myself and my caregiver/family members in terms of emotional well-being?
Questions to Ask Your Sarcoma Surgeon
Before Your Surgery
Preparing for the surgical procedure and tissue preservation
- How many LMS cases have you seen and operated on?
- Based on my imaging studies, does it appear that my tumor is resectable?
- Based on my tumor location and biopsy results, what type of surgery is necessary?
- What further imaging studies or other tests, if any, are needed prior to my surgery?
- Will radiation therapy, chemotherapy, or both be recommended before or after my surgery?
- In proceeding with surgery, will my tumor tissue and/or blood samples be preserved?
- How will my tumor tissue or blood samples be preserved and stored and for how long? Where will they be housed?
- Will genomic testing or other advanced testing be done on my tumor?
- Does this decision need to be made before the surgery so tissue samples can be obtained and processed appropriately? (See Note Below on Testing Your Tumor)
- Will a fresh and/or frozen tumor sample taken during the surgery be used for advanced testing or future research? Note the cancer cell line project: leiomyosarcoma.info/cancer-cell-line-project
After Your Surgery
Understanding results and planning next steps
- Were you able to completely resect my tumor with clear margins?
- Based on the surgical and pathology findings, what is the stage of my tumor and its mitotic score? What do these findings mean regarding my need for additional treatment?
- What are my treatment options now? Will chemotherapy, radiation therapy or both be needed?
- What type of genomic/molecular studies have been done or should be done on my tumor to help guide my treatment?
- What else can I do proactively to ensure that my tumor is available for all possible future testing and research efforts?
Expert Video
Surgery in Treating Sarcomas
Dr. Raphael Pollock explains the importance of surgery
Questions for Your Radiation Oncologist
Radiation Therapy
Understanding the process, timeline, and side effects
- How many LMS patients have you treated?
- How will radiation treatment be done?
- Where will the treatments be done?
- How many treatments will I receive?
- How long will each individual treatment session last?
- What side effects can I expect during and immediately following the completion of the treatment?
- What long-term side effects or complications might I experience following this treatment?
- Will I need surgery or chemotherapy after my radiation treatment?
- What follow-up biopsies, lab testing or imaging studies will I need following this treatment, and for how long?
- How frequently will I have follow-up appointments with you following the treatment?
Note: Testing Your Tumor for Cancer-Related Genes
Molecular/genomic testing for sarcoma-related genes may not be for everyone, but by staying informed and continuing to ask important questions about such testing availability allows you to self-advocate. Make sure that every avenue for testing your tumor tissue is explored — potentially making a difference in the cutting-edge treatment options and targeted therapies/immunotherapies that might be available to you.