Questions To Ask During Appointments
Questions to ask your Sarcoma Specialist
- 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 of the different treatment options.
- 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?
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Information for potential discussion with your oncology care team if applicable from the American Society of Clinical Oncology: Local Ablative Therapies to Metastatic Soft Tissue Sarcoma
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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 who are caring for me, In terms of emotional well-being (i.e. eliminate stress, anxiety during appointments etc.)?
Questions to Ask Your Sarcoma Surgeon if Surgery is Needed:
- 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 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 to be used for advanced testing or future research? Note the cancer cell line project: https://leiomyosarcoma.info/cancer-cell-line-project/
Questions to Ask Your Surgeon After Your Surgery:
- 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?
Dr. Raphael Pollock, a sarcoma specialist and medical oncologist, explains the importance of surgery in treating sarcomas in the link below:
Questions to ask your Radiation Oncologist:
- 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.