Navigating Your Leiomyosarcoma Treatment – Empower Yourself

leiomyosarcoma treatment

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  • Take charge of your leiomyosarcoma treatment / Prepare yourself
  • Stay informed about the latest in research, treatment options, and new therapies/drugs
  • List questions to ask before treatment starts and during treatment
  • Conventional Therapy / Complimentary Therapy *(Note  Below)
  • Ask the right questions of your Oncology Care Team about what to expect regarding potential side effects and how to optimally manage them at home

NOTE:

The difference between conventional therapy and complementary therapy:

Conventional therapies:  surgery, chemotherapy,  immunotherapy, radiation therapy, stem cell transplantation.

Complementary therapies:  nutrition, exercise, psychosocial therapy, pain management, naturopathic options.

Empowering Yourself / Self-Advocate:

  1. Your cancer treatment is not totally in the hands of your oncologist . .  .you have a say.  You must self-advocate to put yourself in the best possible position to ensure the best possible outcome.
  2. Make sure you are coming into the treatment decision phase with as much information about all possible options and the pros and cons of each.   By during your homework, the oncologist will know that you are a well-informed patient who expects a thorough discussion of all  the possible and likely most effective treatment(s) to maximize the potential for your best possible outcome.
  3. Make sure that if you have any other medical issues, that you discuss them with the oncologist so they can be taken into consideration during the development of your treatment plan. You want to minimize “making matters worse” with your other medical issues and minimize potential problems with your cancer treatment– decreasing the effectiveness of the treatment or causing additional or worsened sided effects.   This includes providing  a list of all of the medications and supplements that you are currently taking to make sure that they will not adversely interact with the proposed treatment.  Again,  you want to maximize the potential for the best outcome.
  4. Pay attention to your nutrition. Do not consume foods that are not in the best interest of fighting cancer.  There is a great deal of available literature on best nutrition practices, plus the integrative medicine clinic of the treatment facility at your treatment center should be able to provide proper guidance  in this area.
  5. Exercise is important. Even minimal exercise can have a big benefit.  Both the American Cancer Society and the National Cancer Institute recommend moderate exercise if doable.

Before Treatment / During Treatment – Questions to Ask:

  • Based on the size, location, and stage of my cancer, what is the treatment plan that will offer me the best opportunity for the best outcome?  What are the pros and cons of all of the available treatment options for me?
  • Should my tumor be genomically tested ?  If so,  will I be given guidance and assistance in how to get that done?  If not, why should it not be tested?
  • Based on the recommended treatment, what will the treatment process be?
  • How many initial courses of treatment will I have, and what is the duration of each course of treatment?
  • If not meeting with a Sarcoma Oncologist, ask if there is a benefit to be gained from getting a second opinion about the proposed treatment plan from a Sarcoma Oncologist.
  • If the recommended treatment is chemotherapy or immunotherapy, will the treatment be given to me as a hospital inpatient, at an outpatient clinic center, or can I be treated at home?
  • Must the treatment be done at the facility of the treating oncologist or could I receive the treatment under his/her guidance at a treatment facility closer to my home?
  • Should a family member be with me during my treatments (for support and to bring me and take me home from the treatment sessions)?
  • Will insertion of an in-dwelling IV infusion catheter be recommended or required to receive the treatment?
  • How will I be monitored during the treatment? Blood work,  imaging?  How frequently will these tests need to be done?
  • What side effects am I likely to experience and how can I prevent or minimize them?  What about pain management if needed?
  • How are my daily activities likely to be affected during treatment? Will I be able to work?
  • Are there ancillary support services available at your center, such as integrative medicine resources? If so, how can I get access to them?
  • If the initial recommended treatment is not effective, what would be the next recommended treatment?
  • Will the treatment being recommended preclude me from participation in clinical trials if needed in the future? Would I receive assistance in locating a clinical trial if standard therapies are unsuccessful?
  • Are residual/lasting side effects likely? If so, what might they be? Are there long-term health concerns from the treatment that I need to be aware of?  If so, what might they be?
  • Is there resource assistance for emotional support for me and my family/caregiver during my treatment if needed?

When Treatment is Completed– Questions to Ask:

  • Follow-up appointments after completion of treatment — how often and for what length of time?
  • What blood tests will be needed? How often?
  • What are the most effective follow-up Radiology/Imaging examinations needed to monitor my progress and  how often?  Are there potential long-term effects from radiation exposure due to imaging studies done using ionizing radiation?
  • Is there potential for tumor recurrence, and what is the usual time frame for that to possibly occur? What should I be watching for?
  • What are the options if there is a recurrence?
  • What is suggested for a psychosocial professional to help me with anxiety and/or depression if needed?

 

NCI guidance on managing side effects during cancer treatment:

This site will provide guidance on:
1.  Infection and Neutropenia
2.  Ways to prevent infection
3.  Talking with your health care team to prepare for your appointment
4.  Related resources on:
          – managing chemotherapy side effects; infection
          – nutrition in cancer care
          – preventing infections during cancer treatment
          – clinical trials for infection

Dr. Robert Maki discusses systemic therapies (including chemotherapy) for soft tissue sarcomas.

Reaching For the Cure Together