Are Cancer Patients Bending The Physicians Will For Imaging???

Earlier this evening I was pined by @aussiclydesdale in regards to the following article entitled, “Cancer Patients Turning To Mass Media And Non-experts For Info.” (click here for article) You can also find the press release via the National Cancer Institute here.

According to the article the researchers performed an annual mail survey of patients diagnosed with breast, prostate, and colorectal cancer.

According to the analysis it appears that there is a increase in the utilization or ordering of PET-CT in patients that sought information from nontraditional medical resources, such as radio, TV, books, brochures, or fellow patients.

The researchers rightly begin to question the potential implications to patients that may be receiving PET-CT scans that may not necessarily be warranted under current treatment protocols or national guidelines. (

However, I have a few slightly different thoughts. According to the National Oncology Pet Registry (NOPR) PET-CT will be reimbursed for 3 scans.

The first scan is usually performed during the initial diagnosis and workup of a cancer patients. The second scan is most often done either as a baseline t the beginning of treatment, or after the first few cycles to see how patients are responding to the treatments. The third scan is typically performed slightly after the treatment has been completed to monitor the patient and the cancer.

In addition, along with proper medical documentation, subsequent PET-CT’s may be ordered to monitor treatment, especially if treatment course has been changed due to progression of the cancer. Additional PET-CT may ordered during the surveillance, or post treatment phase of cancer care, as long as the proper medical documentation is obtained. (NOPR presentation here)

So I question how valid the research is due to a few items.

1. In my experience working with over 300 cancer programs across the United States, most oncology programs are underutilizing their PET-CT’s. Meaning that of the 3 scans that most patients could be receiving during their course of treatment, most patients are only receiving 1 scan, if any at all.


2. Radiology benefit managers: since PET-CT is highly expensive due to the time, the ordering of a radioactive sugar (FDG) that needs to be injected into a patients prior to the scan, as well as the labs that need to be performed to ensure that patients can receive the FDG, I do not see most patients paying for this out of pocket. (I know when I asked to have my father scanned initially with PET-CT vs diagnostic CT the radiology benefit manager would not approve, so it would have cost my father $8000 out of pocket)

3. In order to have the PET-CT covered, there needs to be medical documentation. I have yet to meet a physician that is willing to go against national guidelines, while documenting in the medical record, which can be discoverable in court, just to have a PET-CT performed because a patient wants the scan and read about it in a brochure.

As patients become more savvy about published and accessible national guidelines for their cancer diagnosis, are involved in #SoMe discussions such as #BCSM (breast cancer social media) and #LCSM (lung cancer social media) or even in #HCLDR (healthcare leaders), and the dialogue between healthcare professionals and patients become more realtime  versus when something bad happens, will this begin to change the utilization of PET-CT?

Will the consumer savvy patient begin to say if I have to weigh out a CT scan or a PET-CT during my monitoring phase of care, that they may choose a PET-CT instead? And will physicians support the choice?

It some cases it makes a lot of sense. Especially if you look at it from a patients perspective.

If you are a patient that has spent the last year of your life actively battling cancer, fighting for your life, and to return to your family would you have more peace of mind having the full story versus only the first chapter?

CT gives us a map, like one of the United States.

PET-CT gives us a map along with the weather.

I know when I plan for a journey I like to know where I am going and the weather that I will encounter along the way.

I can only imagine that if I wanted to be reassured that I was still ahead of cancer during my journey, that I may decide to choose a PET-CT so that I have as much information as possible.

Again, this is all about a story. In my opinion there is not a  specific right or wrong answer. That’s why it is your story.

Healthcare, we need to remember that patients are the writers. We are the editors. Together we can write powerful, meaningful, and new stories.

As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM or follow me on twitter @cancergeek


#PtExp #PX #cancer #hcldr #hccosts #hcsm #stories #storytelling #lcsm #bcsm #hcmktg #mktg #storyteller #hcpt #consumerism #hcbiz #CX #UX #Bioethx #storyline #ContentMarketing

3 responses to “Are Cancer Patients Bending The Physicians Will For Imaging???

  1. “Gives us a map along with the weather” – damn, that is the BEST description of the two imaging technologies I have ever heard. And why would someone not want to know the weather in the place they’re planning to travel to? LOVE this post. Am now going to spread it all over ever’where.

    • Casey, as always thank you. I appreciate your comments and it is always good to know that I am able to provide some “value” or positive message to others out there in the world.

      Steal relentlessly and feel free to broadcast and share freely.



  2. Interesting to note that in my cancer of “choice” (or lightning strike) is kidney cancer. It is rare that a PET scan is used in RCC, as it is typically a more slow growing cancer, and thus not able to show the activity that the PET measures. Patients with more rare cancers are often misdiagnosed for many months, and present with metastatic disease more often than those with breast and prostate cancer, for example. Thus it is imperative to utilize the best imaging for the cancer, which is a challenge for the less-experienced doctor. Patient advocacy groups can often lead the newly diagnosed through the maze, empower them with resources and interpret the new language that impedes real communication.

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