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:

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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.

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  • And then there is the additional risk of the biopsy needle setting tumor cells free to spread to other parts of the body.

  • I am so sorry that you had such a traumatic experience. At my hospital, where I assist in CT-guided biopsies as a pathologist, the patients are informed well in advance of the procedure so that allays a lot of the high anxiety such as you described. I always insist on maximizing the amount of tissue attained so that the patient will not have undergone the procedure for nothing. Despite our team’s best efforts, a small percentage (less than 5%) of patients will still end up with non-diagnostic or insufficient tissue taken – which is only compounded by the extra testing that is currently required compared to even a few years ago. Liquid biopsies are only just beginning to be something doable, but are not yet routine. I can only hope that they will become reliable enough to be a routine in the near future. Remember that all of us docs will also become patients if we live long enough.

  • Your article is so important for patients & their caregivers. I truly pray liquid biopsies are implemented soon as it would help to alleviate the stress traditional biopsies bring & the risks associated with this procedure.

  • Grace, thank you for sharing your experience with your thoracic biopsy. The part that stands out to me is how the potential risks were communicated to you minutes before the procedure was to be conducted. If this is how medical professionals prefer to deliver “patient education” then we cannot rely on medical professionals to provide useful information to patients to make informed decisions for their care planning. I know your experience was 11 years ago, but I don’t think much has changed.

    I admire–and share–your optimism for improvements in diagnostic tests with options like liquid biopsies. Still, as you point out, the way that information related to the accuracy and risks of a procedure are communicated to patients has to change. Patients need to understand why a test is being conducted, how likely the test will provide accurate results, what the next steps will be following the test results, and more.

    One of the best resources I’ve used for asking questions when a test or procedure is recommended is Dr. Marya Zilberberg’s book, Between the Lines. Chapter 12 includes 12 questions to ask. (I’m still unpacking from a move and I can’t find the copy of the questions I used to keep on my bulletin board, but you can read the review I wrote when the book was published here: http://www.healthcontentadvisors.com/blog/2012/5/20/between-the-lines-finding-the-truth-in-medical-literature-re.html).

    Ultimately, we need better solutions than requiring patients to plan a long list of questions for their clinicians; some of the information should be provided without having to ask! Your recommendation that patients be provided information on patient-reported outcomes from traditional and liquid biopsies is spot on. Furthermore, patients should be offered the information on risks and how the test will influence care planning in advance of scheduling the procedure–not when they are in their hospital gown with an IV already inserted. I know I’m stating the obvious to you, but this is a point I like to repeat because it needs to change.

    Again, thanks for sharing your experience with a large audience here and for your work as a patient advocate to help individual patients.

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