Patient Experience: Do I Have Cancer? Yes or No?

When people are anticipating a possible diagnosis of cancer, or receive one, the internal clock begins to tick. This is a concept that can be difficult for physicians and other clinicians to grasp. This is one thing that I have been acutely aware of since my own clinical rotations. I saw time and time again people and families having to wait to find out news, sometimes it was good, other times it was bad, but a lot of the time, there was a significant period of wondering, anxiety, worry, and waiting.

Recently with the care of my father, his probable diagnosis of pancreatic cancer, and needing to coordinate his care and manage both of my parents own anxiety and fear, I am once again experiencing the concept of ‘patiently waiting’ on the healthcare system.

As I sat and spoke to several of the physicians and asked many questions on the workup, potential treatment options, and plan of care it made me begin to question why we behave the way we do. What is it that drives our behavior in healthcare?

We have all of this amazing technology, yet we use it in a way that doesn’t always add the most value to those we care for: people and families. So why do we use it in the manner we do?

Well, I went to the NCCN.org to look at the various guidelines, by disease sites, to see what the recommendations are for workups. For the most part they are all relatively similar in nature.

Person arrives with symptom, history and physical performed, followed by imaging and labs, something suspicious is found, a biopsy is performed, sent to a pathologist to receive a diagnosis (confirmation of what is suspected) and then the person and family are called and told that they either have cancer or do not have cancer. Additional imaging is ordered and then referral to surgeon, medical oncologist, and/or radiation oncologist for treatment planning.

I know that this “recommendation on workup” takes time, coordination, finesse, and needs to be done in the time that is best for the person and family going through the process as well as the clinicians. It is a balance. Sometimes the people and families in the middle of all of the chaos don’t want to go fast, and other times it is medically not possible to go quickly.

From my own experience in building, operating, and improving programs my benchmark has always been 3 business days or less (72 hours). Some facilities and clinicians do not like this mantra, but I have seen it become an ideal standard.

However, why does it take that long to get a confirmed answer to someone that just wants to know if I have cancer or not? Yes or no. Why?

In thinking about it, it all comes down to the fact that we live in a world in which we are paid for the tests and exams we order and read. Order it in the right sequence and it will be paid.

So until there is a confirmed tissue specimen sent to pathology and it has been reported as cancer, a PET can not be ordered and reimbursed.

However, if a person wants a simple YES or NO answer if the suspicious mass is cancer, and they want that done as quickly as possible, how do we do accomplish this task?

PET? Positron Emission Tomography. A PET scan along with a CT scan are like viewing a wether map. The CT Scan is like looking at a map of the US with the states, cities, lakes, and other physical attributes. A PET scan is like seeing the weather. Alone not a lot of help, but together a very powerful tool.

So if someone wants a simple answer of YES or NO as to if they have cancer, then a PET-CT is a valuable option. The problem is that today it only can be paid for after there is a confirmed diagnosis of tissue from a pathologist.

Why? Why do we need a biological test that tells us something is cancer after we already know that it is cancer? Granted I know we use it to see if there is cancer that has spread to other places inside the body. I know we use it for staging and treatment planning. I understand we use it to see how active the cancer is as well.

I get all of that. However, is there harm in performing this test sooner in the workup process to a person? Is the information gained in doing the PET earlier in the process still as valuable to the clinicians? Do they lose any content in performing the PET sooner rather than later? How many times would a PET be ordered in highly suspicious people and not be cancer? Is the exposure to FDG (a radioactive sugar) in a non-cancerous population more or equal to those that receive CT and other imaging exams? What would be the lifetime radiation exposure?

I know there are a lot of questions, but if we set the right process within the recommendations, then perhaps the risk is the equivalent, but we are able to get a simple YES or NO to people and families in a more timely fashion.

At the end of the day, it is all about getting the right answer to the patient at the right time, as quickly and safely as possible.

The question remains, is it a simple YES or NO that people want or is it a definitive answer that physicians need?
As always, you can feel free to contact me at: CANCERGEEK@GMAIL.COM

~CancerGeek

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