Remember the Patient`s Experience in Interventional Oncology

In the words of Jane Goodall, “Only if we understand can we care. Only if we care will we help. Only if we help shall they be saved.” I had an experience that embodied this statement.

As a cancer warrior and because of the graciousness of Suzanne Lindley I recently had the pleasure of a life-changing event. For 3 days I lived with other individuals affected by various liver tumors typical of what we routinely treat in interventional oncology. My encounter not only underscored things I have learned as a patient but also exposed me to new concerns and plights. At the risk of sounding like a preaching ex-smoker I thought it might be worthwhile for both IO physicians and in turn their patients for me to reiterate some of the concerns and comments discussed by my new roommates.

Communication

This is a two-way street between doctor and patient. Patients thrive on knowledge and explanation. Before the reality of IR clinics I had the experience of talking to an occasional patient regarding their chemoembolization procedure only to hear them respond, "I have cancer?" Communication is key to allaying patient anxiety which in turn has been shown to lessen procedural complications. But the onus is also on the patient as well. Having the personal experience myself, when first diagnosed, it is like being a deer in the headlights. Your brain feels like it is surrounded by saran wrap. You don’t hear, understand, or remember what you are being told. It is helpful for the physician to deliver information slowly, repetitively, and at a level the patient understands. Also it is ideal if is this transfer of information transpires in the presence of a family member or representative for future regurgitation of the conversation.

Exam Day

When scheduled for labs or imaging, patients and their caretakers begin to get “scanticipation” or “scanxiety” in the days days prior to the actual event. Anxiety and depression creep in as one’s mind wanders regarding a bad result that can mean a major change in their lives. One of the cruelest insults is the unexpected cancellation of their test for which they have mentally prepared themselves for so many days. Of course sometimes this is unavoidable but it should never be cancelled for whimsical convenience.

Delayed Results

As a cancer warrior, I am on the edge of my seat until I receive my labs or imaging results. I would go so far as to violate HIPAA rules just to retrieve my results ASAP. It is amazing talking with patients how long and how insensitive some health care workers are at providing prompt results. These results can be life changing and the anxiety of not knowing can be impossible to live with.

Side Effects and Complications

Regardless of the percentage, these happen and should not be taken lightly. The choice of a procedure based on lower cost should never be chosen at the expense of “a few percent increase in complications.”

Dabblers

When listening to our esteemed gurus speaking of their appropriate modality of treatment, they sometimes give the impression of the simplicity and ease of the procedure while applauding its efficacy. This may be true but many times it is true because it is in their hands with their experience. Reality of the procedure including its minutiae should be stressed by our experts so dabblers do not enter or enter with extreme care. I was amazed at the percentage of complications and side effects that my 3-day roommates encountered. It seemed so disproportionate to the lectures I have heard.

Alternative Medications

Many individuals asked about my impression of vitamins and various nutrients. My feeling is that as long as it doesn’t supplant or interfere with known successful therapy, then why not? For myself, I was on an oral chemotherapy at the cost of $14,000 per month. It put me into protracted liver failure. I tried all traditional medical remedies including immunosuppression. While immunosuppressed I contracted Hep C from a needle stick. Three liver biopsies and 18 months later, no change for the better. I began a regimen of turmeric, milk thistle and N-acetyl cysteine and 2 months later my liver began to return to normal. I was told it was probably coincidence. Well, as far as I am concerned, give me more coincidence!

The Word "Survivor"

When speaking to non-ffected individuals, it is a common misimpression that a cancer survivor is cancer free or cured. This could not be further from the truth. Many who are “surviving” face almost insurmountable problems on a daily basis. I prefer to call these individuals cancer warriors as they are in a constant battle to overcome the potential terminal nature of their process whether it be the cancer or its treatment.

Hope

It confounded me to hear the amount of individuals who were given an estimate of longevity after their cancer diagnosis. It typically came not from IR physicians but from oncologists. It disturbed me as this was never my practice since I believe the battle is individual, variable, and unpredictable. I began my career in pediatrics and an old pediatric icon impressed on me never to label a child because if you do they will grow into that label. In the same manner if you tell someone they may have 6 months to live they may adhere to that sentence. I believe that hope can be the last bastion of sanity for many and it should never ever be belittled or taken away.

The Snapshot

Finally, there is what I affectionately call "the snapshot." In the house where we stayed there were 10-12 gorgeously gowned women positioned ever so beautifully on a spiral staircase. During the photo shoot, that moment in time captured a poise, a smile a countenance that could never be mistaken for someone who is ill and suffering. That instant everything was perfect and sickness was the furthest thing from the minds of these angels. Someone viewing the pic would never know what it took in preparation both mental and physical to generate that “snapshot.”

I realize that for many of my peers the info shared above is redundant and well known. However the passion of my new friends was so moving I felt compelled to share their concerns and experiences.

Before signing off, I would like to end with 2 more Jane Goodall quotes: “What you do makes a difference, and you have to decide what kind of difference you want to make.” and “We have the choice to use the gift of our life to make the world a better place--or not to bother.”

Thank you,

Jim Caridi