Mar 05 2015

Patients Looking Out for Each Other – When Patients Know Best

chemoWhen oncologists consider recommendations for their patients’ cancer treatment, they will often consider the guidelines published by the National Comprehensive Cancer Network. They expect to find the latest information in effective treatment, based on the best research, along with information they can share with their patients.

But it turns out, that may not be what’s there.

This recent NPR Shots article, How A Group Of Lung Cancer Survivors Got Doctors To Listen, features some smart and bold patients who, while chatting through their Inspire Support Group, discovered that the NCCN’s guidelines weren’t current – and were, for some patients – not as effective as they could be.  Patients who might possibly be effectively treated would instead die. That wasn’t good enough.

So they took matters into their own hands, and got the information updated.

I’ve long believed and have emphatically stated that patients have an important role to play in the determination of the right treatment for themselves. Some digging – online and with fellow patients – can often lead to information their doctors don’t disclose. Sometimes that information isn’t disclosed because the doctor doesn’t know about it (as in the example here – because the NCCN wasn’t current.) Others don’t disclose because they can’t make money from a treatment they don’t provide. Still others just don’t believe in a treatment, no matter what the evidence suggests.

Let this good article from NPR help you better understand why you must work to uncover all the possibilities for yourself.  Here are a few ways to do that:

  1. Get a second opinion if treatment recommendations are at all difficult, long term, or invasive.
  2. Tap into support groups for your diagnosis and ask others about treatment they have undergone, and their level of success.
  3. Hire an independent patient advocate to help you sort out your options.

Update:  3/6/15:  I received a note from John Novack from Inspire (where the support group conversation took place, as mentioned above).  They have received feedback that several people who learned about the updated NCCN guideline for lung cancer then shared that information with their oncologists and changed their treatment for their lung cancer.

While John did not say so (don’t want to put words in his mouth) – the conclusion I reach here is that at least some of those patients will survive for far longer than they would have had their fellow guideline-changing-patients had not stepped up.

I love this!  And appreciate their efforts so much (this includes Chris Newman, the patient featured in the NPR story, and who has commented on this post – below).  They are truly proactive survivors.

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Do you have advice or a story to share that illustrates this post?  Please share in the comments below.

Want more great tips for smart, empowered patients?

4 comments

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    • Chris Newman on March 5, 2015 at 5:14 pm

    Thank you for the beautifully written article and the sage advice Trisha. The more we can get the word out the more patients we educate. it could even help extend or save a few lives!

    • G on March 5, 2015 at 6:03 pm

    As a very minor contributor to the NCCN proposal and the NPR article I have firsthand experience with the medical jungle and the path to the best treatment. Self advocacy is mandatory

    • Chris Newman on March 6, 2015 at 10:22 am

    Our beloved and steadfastly humble “G”, who was not only an important member of our team, but has selflessly and, both behind the scenes and online, helped countless patients in his advocacy work. It is through you, and later Annika Holm, that I became aware of the important potential of curative intent treatment for appropriate lung cancer patients with oligometastases. You humble me, and I am honored to call you my friend.

    • sarahcox127 on March 31, 2015 at 10:02 pm

    Powerful! When patients take charge of their healthcare it truly makes a difference. Every patient should be engaged and empowered to learn and understand their health.

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