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Treatment Choices: Standard of Care


Most cancer patients will have choices to make about the type of treatment they will receive. Ten to fifteen years ago this was not the case but with new treatments comes the necessity to choose.

Some doctors actively involve you at all steps. Others prefer to give you the choices and let you decide and still others will tell you what they think you should do. Let your doctor know how you would like to be involved in this decision-making.

CISN Tip:

We understand that everyone is different. The important point is that you know you have choices. Be sure that you are open and honest with your treatment team so that you fully understand your options and they address all questions that you have.

Although you may feel like you must choose among all bad options and you must rush to a decision, try to take the time to come to a decision you are comfortable with and then don’t second guess your decision.

What ever you decide will be the best decision under the circumstances.

By now you might know the standard cancer treatment choices:

  • Surgery
  • Radiation
  • Chemotherapy
  • Hormone Therapy

There are also sometimes other options including: gene therapy, angiogenesis inhibitors, lasers, biological therapy, clinical trials and complementary or alternative therapy.

Some patients also explore integrative and complementary/alternative treatment options. See Complementary and Alternative Section.

Clinical trials are also options to consider before you make your final choice.
See Clinical Trial Section.


 
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Although nobody can tell you what treatment will work best for you, we can tell you we’ve been there and have gotten through it, and so will you.

Cancer patients often say that the hardest time is the limbo between diagnosis and action when you make decisions about treatments.

These people may be members of your treatment team:
 
Name of Doctor Role/Treatment
Pathologist A medical doctor who has a specialty in looking at cells and tissue to diagnosis disease. Ask for a copy of your pathology report and consider getting a second opinion.
Diagnostic Radiologist Screens for cancer
Oncology Surgeon Surgeon who removes all or as much tumor as possible
Medical Oncologist

Administers:
Chemotherapy to kill any cancer cells in the bloodstream:

  • Neoadjuvant chemo -
    before surgery
  • Adjuvant chemo –
    after surgery
Hormone Therapy to stop or slow certain types of cancer growth
Gynecologic Oncologist Specializes in the treatment of gynecologic cancers
Radiation Oncologist Oversees radiation to kill any remaining cancer cells at the site of cancer
Oncology Nurse They have many roles in the clinic and can serve as a great resource for Q&A
 

You may also meet with a nutritionist, social worker, financial planner and/or physiologist.

Your medical oncologist will probably be your team leader. Some centers do a better job than others about coordinating your care but ultimately, you will be responsible for insuring that you receive good, coordinated treatment.

CISN Tip:

Ask questions to ensure that each of your doctors is aware of what your other doctors are doing. Don’t assume they know.

Treatment Plan:

Always ask for a written treatment plan that you can keep with your records. Some centers do this regularly but many do not. Ask for a written report of what your team has decided is best for you.

Buy a three-ring binder: put the following info in it

  • Pathology Report
  • First, second opinion
  • Treatment Plan
  • List of your doctors, contact numbers, locations
  • Ask for copies of all your test/lab reports and file them
  • Handouts from your doctors
  • Financial info
  • Insurance info

CISN Tip:

We believe information is power. Studies show people with cancer who become informed about their disease and treatment options often do better with fewer side effects than those who just follow doctors’ orders.

Some people can be overwhelmed by too much information. Learn your limits and know your style. If you don’t want to know a lot of details, that is fine; maybe someone in your family or a friend can learn the details and supply you with information as you want it.

Be sure to discuss with your doctor any other health conditions you might have.

Top 10 Tips for the Treatment-Making Decision Process from the Patient’s Perspective

1. Stop and Breathe

Calm down from the overwhelming sense of entering the cancer universe. Your emotions of shock and fear are normal. You may have trouble concentrating and retaining new information because of this, so be gentle with yourself.

 

 

Take extra care to eat and sleep well. Ask for help with this if you are having difficulties.

Avoid making any major treatment decisions until you feel capable of making an informed, educated choice for yourself.

Put together both a doctor and a family / friend team to help you.

 

 
2. Learn about the Cancer

Take the time to learn about your diagnosis. Understanding your diagnosis allows you and your loved ones to better evaluate treatment options. Take in as much information as you are comfortable with.

 

Many advocate organizations have educational materials they can mail you. We will also refer you to their websites. (Each cancer type has a different colored ribbon they use to identify their cause).

 

Be sure to inform your doctor about your learning style:

  • Do you need pictures to help you understand?
  • Do you prefer that info comes in small pieces that allow you time to digest it before moving on?
  • Do you want to know everything or just some things?

3. Identify your Questions

An important part of managing your care requires identifying questions to ask of your doctor. Your questions will change during the different phases of your journey. Organize your thoughts, uncertainty, and gaps in knowledge by making a list of questions before each doctor’s appointment.

 

Write these questions down and leave space to fill in the answer given by a member of your treatment team. Ask for clarifications if you don’t understand. Doctors often have a specific time set aside for each person during the day so it is important that you come in to your visit organized.

 

4. Ask Family and Friends for Help & Bring an Advocate to Appointments

Cancer patients sometimes feel like they need to acquire a PhD in their cancer overnight.

Asking for help from family and friends can lighten the burden, speed up the research process, and remind you that you are loved.

Also ask a capable, caring loved one to join you for your medical appointments to serve as your advocate in communicating with nurses, doctors, and other members of your medical team, or to hold your hand.

Serving as both patient and advocate for one’s self can sometimes be too stressful.

5. Identify Treatment Facilities with Expertise in your Cancer

There is tremendous variability in treatment approaches across the United States.

Standard care, or a nationally agreed-upon treatment for a specific disease, does not exist for many types of cancer.

 
  • Some facilities have larger departments devoted to certain types of cancer.
  • Some facilities take more aggressive or less aggressive treatment approaches.

  • Some facilities have different types of equipment. Some facilities use different cancer-related tests.
 

All facilities conduct different research, and therefore their clinical trials are most often unique to their institution.

6. Identify Oncologists Specializing in your Cancer

There is also tremendous variability in oncologists across the United States.

Many oncologists think differently, communicate differently, relate to their patients differently, and might recommend different treatments.

Shop around, find the Doctor who is right for you and who is knowledgeable and experienced in treating your cancer.

Find a doctor who treats you respectfully, makes you feel comfortable and gives you confidence.

A very important aspect, once you have selected a treatment team, is to be honest with them. Let them know how much you want to be involved with making decisions.

If they recommend a medicine and you begin to have side effects, don’t just stop taking the medicine. Call, ask for an appointment and discuss what else might be done or if there are other medicines to counteract your symptoms.

 

It is very important that everyone is on “the same page”. Again, be open and honest about what you are doing. If you are feeling vulnerable (and who isn’t) ask a friend to come along to support you.

Remember to ask about arrangements for “after hours” phone calls, especially following your first doses of new medications.

7. Collect Multiple Opinions

Really, shop around. To make the most informed, educated decision about treatments, you should visit with at least two to three facilities and oncologists. Your Doctor will not be insulted. Some patients get diagnosed and treated locally but travel to larger centers for second opinions. This is not only OK, it is smart. Any doctor who is not comfortable with this is probably not the right doctor.

Cancer is not like the flu or strep throat, which have standard treatments. Cancer can oftentimes be treated differently depending on your doctor, treatment center, or the area of the Country that you live in.

We all test-drive many cars before we buy one; do the same before you settle on a doctor.

8. Evaluate Risks Versus Benefits

What are the risks of treatments? What are the benefits? One simple way to evaluate risk versus benefit is to create two columns with risks on the one side and benefits on the other. Definitely factor in expected outcomes from treatments, side effects, quality of life, and predicted outcomes without treatments.

9. Use Practical Tools: Notebooks & Tape Recorders
 

Collect your information in a notebook, and consider tape recording conversations with doctors.

The emotional stuff of cancer sometimes clouds the mind’s ability to remember the fine details of complicated medical conversations.

 
 

The tape will become your ally and memory. Even if you go to your appointments with a friend/family member – tape the appointment conversations.

10. Embrace Laughter, Hope, & Patience

Don’t forget the joys of life in the midst of negotiating the new terrain of cancer.

 

Laughter is excellent medicine for every aspect of your being. And trust that you will move through your challenge step by step.

Never give up hope!

Moving through the cancer maze is a process that takes time.

 

Many long-term cancer survivors can attest to wanting to be further down the path than they are. Be patient, and know that you will progress.


Check out the CISN Resources Links for the following organizations, as well as other non-profits focused on disease-specific cancers for more information about treatment decisions.

  • National Cancer Institute
    • Cancer Information Service at 1-800-4-CANCER for support, educational materials, and other resources, medical dictionary, fact sheets organized by therapy and disease, and more.

  • American Cancer Society (ACS)
    • Web-based program called Treatment Decision Tools, fact sheets, and more.

  • National Comprehensive Cancer Network (NCCN)
    • Treatment Guidelines for Patients developed with ACS, and more.

  • Lance Armstrong Foundation
    • LIVESTRONG SurvivorCare at 1-866-235-7205 to discuss cancer diagnosis and treatment options, the LIVESTRONG Survivorship Notebook, cancer information, and more.

  • People Living with Cancer
    • Resources about finding quality cancer, diagnosis, treatment, and more.

  • National Coalition for Cancer Survivorship
    • Free, self-learning audio program called Cancer Survival Toolbox, publications, Resource Guide, publications, and more.
 
 
 
 
 
 
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