Be Cautious When Making Treatment Decisions – There Are Traps Waiting To Ensnare You

 No matter what, being diagnosed with cancer is difficult and very stressful.  Choosing a treatment can be a difficult task, especially since there are treatments that are minimally effective, not effective or are deleterious to your well-being.  Sometimes an approved treatment only causes you to have side effects but does nothing, or very little, to improve your quality of life or to extend your life. 

In these circumstances treatment choices become hard however, it must always be your choice to use or not use a treatment.  It should never be your doctor’s choice or your family’s choice.

For some of us living another month or two is worth suffering through difficult side effects a treatment might cause, but for others, the quality of life trumps the length of our life.  Both of these decisions are correct for some of us, but neither is right for all of us.  These decisions have to be your choice; nobody else should make these decisions for you.

Making things even harder is the fact that there are cancer treatments that don’t improve the quality of your life nor extend your life.  All they seem to do is make you more miserable, yet they are offered to us without regard to our needs or desires.  Why is this the case?  There is no excuse to use a treatment that will not improve your quality of life or extend your life but will cost a lot of money and make you miserable.

Unfortunately, you need to be cynical; you can’t always count on your doctor to help you sort through the options. Many doctors will abdicate their roles and will just list all the drugs out there because they want you to have a say in your personal care. They blindly assume that because the FDA approved a specific treatment that its advantages outweigh its dangers.  Sometimes our doctors are not knowledgeable and don’t realize that the studies leading to the approval were inconclusive, or even negative.

Offering a list of possible treatment options to us, without their complete understanding of the drug and without their conveying to us all the information about the drug so that we can make our own decision is not empowering us.  Empowering a patient is providing us with well-versed guidance; informing us about the benefits and the risks of a treatment so that we can then make an educated and intelligent decision.

Ask your doctor specific questions.

It is important that we take the lead and make sure that we are being presented with the best, complete and accurate information.  We need to ask our doctors questions like:

1-     Will this drug help me live longer?

2-     Other than extending my life, what other positive effects can I anticipate gaining by taking this treatment?

3-     What are the negative side effects I might experience from using this treatment? 

4-     How dangerous or unpleasant might these side effects be for me?

5-     Will the side effects cause me any additional restrictions in my daily activities?

6-     What will the financial cost be to me if I elect to use this treatment?

7-     Will my using this treatment restrict me from being able to use another treatment?  

 

If you don’t get answers or don’t believe that the doctor really knows, ask them to do the research and then give you a summary of their findings.  While they do this you should go and do your own research, don’t wait for them to get back to you. 

 

Why is it important to do this research?  Here are three great reasons:

 

Bendamustine (Treanda)

The FDA has approved this drug to treat non-Hodgkin lymphoma and chronic lymphocytic leukemia. 

Cost: $53,000 to $85,000 a year.

Results: There is no evidence that Treanda improves the survival time or the quality of life for people with either non-Hodgkin lymphoma or chronic lymphocytic leukemia despite its FDA approval.

 

Cabozantinib (Cometriq)

The FDA has approved this drug to treat thyroid cancer.
Cost: Nearly $170,000 a year.
Results: There is no evidence that Cometriq provides any survival advantage while it usually degrades a patients’ quality of life. 

 

Everolimus (Afinitor)

The FDA has approved this drug is for kidney, breast and pancreatic cancer.
Cost: Nearly $145,000 a year.
Results: Afinitor does not improve the survival time for people with kidney, breast or pancreatic cancer, despite the FDA approval.  There is no evidence that it improves quality of life either.