CISN - Recently Diagnosed Cancer - Decision Aids

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Decision Aids - Comparing Treatment Options

Overview

Remember, there is no correct treatment option for all patients, even if their diseases are similar. Your doctor will help identify treatment options that are well suited to your disease. But in many cases there will be several options as cancer is not yet well enough understood to know for sure which one will work best for you.


Benefits vs. Risks

Further, since most treatment options represent a balance between benefits (advantages) and risks (disadvantages), your particular preferences are important to factor into your decision.

For example, some people want to take very aggressive therapy to feel confident that they have done everything possible to fight their cancer. They may want to take very toxic chemotherapy (i.e., many side effects), even if the chance of it helping them is quite low.

Others might be quite concerned about the toxicities associated with chemotherapy, especially side effects that may not show up for many years after treatment is complete (e.g., new cancers caused by the chemotherapy). They might choose to forego chemotherapy unless it has been proven to have a very large and likely benefit.

Many of us have had to weigh advantages (benefits) vs. disadvantages (risks) when buying a house or car or when / where to move. The same kind of thinking applies when making treatment choices.

What to consider:

Your doctor can provide the statistical numbers, but only you can factor in:

  • What the benefit vs. risk numbers mean to you – your values
  • Length of life
  • Quality of life
  • Cost
  • Travel
  • Ease of treatment / frequency of visits
  • Any diagnostic or biomarker tests that are available to provide more information about your tumor and its response to treatment.
    • Example: Oncotype DX for estrogen positive, early stage breast cancer: www.OncotypeDX.com

You should think about which of these differences are most important to you.

Too many choices

We realize that making this decision can be daunting, especially when you are in the emotional throes of having recently received a cancer diagnosis.

In fact you may feel like you have too many choices.

While you will want to rapidly come to a decision, taking an extra week or two and/or having a second opinion is often medically feasible.

Doing so is also likely to help you feel more confident about your decision. Regardless of what you decide, try not to second-guess the decision.

If you assess all options carefully, you will have the peace of mind that your decision was the best one you could make, given that there is still a great deal of uncertainty about treating cancer.

Categories of treatment:

Typically each option will include several different categories of treatment (e.g., surgery, radiation and/or systemic treatment). It will be useful to look at all of the categories associated with an option together. That way you can compare trade-offs based on the full treatment plan.

  • Surgical Procedures that might be available to you
    This should include information about:
    • The invasiveness of the surgery
    • The length of time you would be under anesthesia
    • Any loss of function that may result from the surgery
    • Potential for disfigurement
    • Possibility for reconstructive surgery

  • Radiation Therapy Regiments that might be appropriate
    This should include information about:
    • The total amount of radiation you would receive
    • How frequently you would need treatment (often five days a week)
    • Over what span of time (often over four to six weeks)

  • Systemic Therapy Regiments that might be appropriate
    Systemic therapies include:
    • Chemotherapy
    • Hormonal therapy
    • Newer biologics and immunotherapies that circulate throughout your body
      and are used to treat and/or prevent metastases

  • How The Therapy is Administered:
    • Orally as a pill (most hormonal and some chemotherapies)
    • Through an IV (many chemotherapies) - some as IV-push (bolus), some as IV-drip over a long period of time
    • As a vaccine (most immunotherapies)
    • How frequently you would receive the therapy
      (e.g., daily, every three weeks)
    • Over what period of time

You should also discuss the side effects associated with each therapy.


How to chose between options:

We recommend that you begin to fill the template out with your doctor. Then take it home to discuss with your loved ones and add information that is especially important to you.

Find out all of your options:

Your doctor should provide detailed information to complete the left hand column of the table as well as some of the pros and cons.

For example, women with breast cancer often must decide between having more extensive surgery—i.e., mastectomies without radiation vs. less extensive surgery—i.e., lumpectomies plus radiation.

CISN Tip:

We have designed the following template (see below) to help you organize your thinking about various treatment options. A printable version of a treatment options template is in development.

For each of your treatment options, make sure you understand and adequately explore the following pros and cons of each of your treatment choices:

  • Potential for cure and/or life extension
  • Extent and likelihood of permanent loss of function
  • Cost of treatment plan; insurance coverage
  • Length and convenience of treatment plan

  • Other medications likely to be used in treatment plan

  • History of use of this treatment plan
Understanding treatment side effects:

We have an entire section on treatment side effects that we strongly encourage you to read. It will provide you with information that you will want to discuss with your doctor before deciding on any course of treatment.

Your doctor will probably provide you with an extensive list of potential side effects for each drug that s/he recommends.

We suggest that you fill out a table like the one below for each regimen that you and your doctor are considering. Click here for a printable version of the side effect template to take to your doctor.

With your doctor, fill in the top panel by listing all the drugs that would be included in the regimen and indicating the amount of each dose, how often you would take it (i.e., frequency) and number of doses overall.

Then work with your doctor or nurse to transfer information about side effects of individual drugs to complete the bottom panel.

As you are filling in the table make sure you ask some of the following questions to ensure that you adequately understand all of your options:
Systemic Therapy Regiment
Drug
Amount
Frequency
Number of Doses
1)      
2)      
3)      
Common
Side Effects
Occasional
Side Effects
Rare
Side Effects
     
1) 1) 1)
2) 2) 2)
3) 3) 3)
  • What is the meaning of common, occasional and rare (i.e., what percentage of patients are affected by side effects listed in each column)?
  • Do you understand all of the conditions described in the table?
  • Which of these side effects are serious or life threatening?
  • Which side effects are of most concern to you, based on your values and lifestyle?
  • Are there protective treatments that can reduce the likelihood of any of the listed side effects?

  • Are there treatments that can counter any of these side effects if they occur?

  • Which side effects are likely to go away after treatment? Which are likely to be permanent?

  • Are there any late-appearing side effects (e.g., secondary cancers)?

  • Are there any drug or food interactions or other interactions (e.g., some drugs make you more susceptible to sunburns) that you should be aware of?

  • How often does this treatment affect patients’ cognitive functioning? How and how seriously?

  • How often does this treatment affect patients’ fertility? Are there any precautions you can take (e.g., banking sperm or eggs)?

When you go home review these sheets carefully, highlighting the side effects that are of most concern to you.


How to Make a Treatment Decision?

We have discussed the importance of finding out all of your options and how to compare them against each other. It is also important to decide early on who will help you make your decision.

There is no one way or even right way. Again, your treatment process should revolve around what you want and need.

We will list a few options that others have chosen. You may find your personal style in one of those or you may like a combination of styles.
  • How much information do you want:

  • Informed decision: People who like to have all the facts up front use this style. You may be already searching on the Internet. You might ask for all of the statistics and even articles about your choices.

  • Basic Information: People who only want “the bottom line”, rather than all of the details prefer this style.

It is important to know which style you prefer so you can inform your doctor. If you only want the bare details, you might consider asking a member of your family/support team to be the one that receives more detailed information.

  • Who helps you decide:

  • Shared decision: This style involves you and your doctor coming to a decision together. You may also include other members of your personal support team in the decision.

  • Individual decision: People using this style option will come to a decision alone. They may want all the information or just the bare facts, but they will make the final decision.

  • Paternal decision: Someone else makes the decision for you. It may be the doctor or it may be someone in your personal support team. Sometimes this is culturally driven but may not always be.

  • Empathic decision: This is a new term used by researchers at Mayo Clinic and is a based on the needs of the patient. It can be any combination of the above styles.

Again, there is no right or wrong way to do this. What is important is that you make the choice based on your style and needs and not on your doctor's or family.

For example, if you want all the facts and then want to make the decision either alone or with a family member and you have a doctor that gives you little information, and the only option is his way, then it is time to find a new doctor that is a better match for you.

Timing of your decision: This is also variable and needs to be honored and discussed fully with your doctor. Although you do not want long periods of time between diagnosis and treatment, there may be several weeks to even months that can be used to gather facts, second opinions and the time needed to discuss all options and decide.
CISN Reminder

You may have more than one treatment choice. Some people will choose one path; others may choose a different path. The choice you make will be based on many factors that may include some or all of the following:
  • Scientific evidence
  • Personal preference – your values
  • Length of travel / number of office visits
  • Ease of use (Example: oral medicine vs. I.V.)
  • Cost
  • Clinical trial eligibility
  • Other factors

Make your decision together with your doctor and support team and then forget about your other choices. Feel confident that you made the best choices for you.