Liquid biopsy research should include the perspectives of patients like me

Eleven years ago, I was shocked to be diagnosed with advanced lymphoma. To offer an informed second opinion, an oncologist recommended that I have a standard-of-care CT-guided thoracic biopsy. The goal was to collect a tissue sample from one of the nodules on my lung or from the mass in the middle of my chest that an earlier PET scan had detected.

I hope I never have to undergo a biopsy like that again. It’s why I’m incredibly excited at the prospect of what are being called liquid biopsies. These are essentially blood tests used to collect a sample of cancer cells or pieces of DNA from them.

The option to use liquid biopsies as a reliable first choice to guide treatment planning would be a welcome improvement for people with cancer. Since many of them aren’t aware of this in-development test, it might be useful to know what traditional biopsies look like. Here’s a description of mine:

I started by fasting overnight before having the procedure. My care partner and I (I was told I needed someone to drive me home after the procedure) took the day off from work to travel into New York City for the appointment. After I checked in and changed into a hospital gown, a nurse inserted an intravenous line into my left hand.

We then met with an interventional radiologist, who explained the procedure and risks. Learning you will have a needle inserted into your chest near your heart, then scanned by CT to make sure the needle is in the right place, followed by pushing the needle in a bit deeper and having it scanned again sounded horrific.

The doctor rattled off a list of potential risks. The complications, which included a collapsed lung, pulmonary hemorrhage, infection and, in rare cases, being admitted to the hospital or dying, sounded scary for a biopsy. I signed the informed consent. What choice did I have? I needed clinical evidence for a final diagnosis.

I was wheeled into the room for the procedure, scolding myself for looking around at the equipment and tools. I was casually told I would be instructed to hold my breath and stay still at certain times during the procedure.

“Wait a second,” I said to myself. “I thought I was going to be under anesthesia? How will I be able to understand what to do and when?”

As a patient advocate who assists patients and their loved ones in navigating their diagnosis and the health care system, I am level-headed, rational, and laser-focused on the task at hand. My composure as a patient was starkly different. My patient mind took stock of the situation and I blurted out, “What if I’m too awake and I see them plunge a needle into my chest and it’s really painful?”

“What if I move while they are inserting the needle deeper?”

“What if it’s so painful that I faint?”

My frantic questions were met with reassurances that everything would be fine and I wouldn’t feel or remember a thing.

I was now confident everything would not be fine, that the needle would puncture a major blood vessel or my heart if I didn’t hold my breath correctly as instructed. To my embarrassment and the dismay of everyone in the room, my fear spiraled into hysterical crying and an uncontrollable panic attack.

The medical team was running behind schedule. I saw the frustrated looks around the room that basically said “we don’t have time for this.” I was so sorry. This was supposed to be a routine biopsy but I was petrified, even more so since the biopsy was being done to verify a cancer diagnosis.

After being given some anti-anxiety medication, my crying slowed to a silent, steady stream of tears. I had never felt more afraid in my entire life. Sedation was administered, and I underwent the procedure.

Here’s what my recovery looked like:

• a partially collapsed lung
• coughing up blood
• significant chest pain and shortness of breath
• extended monitoring for low blood pressure
• multiple chest X-rays
• extra time off from work due to pain and shortness of breath

And for all that I got inconclusive results because the team wasn’t able to get an adequate sample of tissue.

I eventually needed video-assisted thoracic surgery with biopsy to get enough tissue for my doctor to confirm the final diagnosis.

The post-procedural complications and recovery I experienced are fairly common and well-documented as minor complications in the literature. Looking back, I wish I had known more prior to the procedure on what to expect from a “traditional biopsy.” I also wish there was a faster, less invasive, less expensive, less traumatic way of collecting tissue.

I imagine what would have happened if I could have had a liquid biopsy instead of the traditional one: no overnight fast or trip to New York. Less (or no) time off from work for me and my care partner. No panic attack, no partially collapsed lung, no pain or coughing up blood.

As researchers work to develop liquid biopsies, it is important for them, and the media, to report the perspectives of patients and care partners on both this innovation and traditional biopsies, in part because most people have no idea what is actually involved in a traditional biopsy. It is essential not to underestimate or overlook completely the patient experience, the impact on quality of life, and the costs associated with both traditional and liquid biopsies.

Significant out-of-pocket costs can be incurred from traditional biopsies and, if the results are inconclusive, from repeat biopsies and surgery. In addition to medical expenses, there’s also time lost from work, for both the patient and care partner, transportation costs to and from the facility, parking fees, child care, and the like. Additional costs may be incurred and time lost if complications occur.

I know that liquid biopsies aren’t foolproof alternatives to traditional biopsies. Like the traditional version, liquid biopsies can fail to return results. They can also “detect” cancer or another malady when it isn’t there (known as a false positive) or miss it when it’s present (false negative).

But as research into this technique moves forward, how it affects quality of life and out-of-pocket spending must be carefully assessed. It is crucial to obtain patient-reported outcomes after traditional and liquid biopsy procedures. Patients and their loved ones need this level of granularity to make informed decisions about their care.

Grace Cordovano, Ph.D., is a board-certified patient advocate specializing in cancer and founder of Enlightening Results.