I am a firm believer that medicine is best practiced as a team, with the one undergoing treatment at the center participating fully. It’s a belief embedded in the multidisciplinary care model. I have been fortunate to have been exposed to multidisciplinary clinics in my fellowship at Memorial Sloan Kettering Cancer Center and have worked at institutions that also believed in practicing oncology this way. One of the things they all had in common was a tumor board—a forum where all the specialties involved in cancer care can meet, review, discuss, and come to a consensus on a patient’s case. It is not a small undertaking and requires significant coordination—and a shared belief in its importance—to bring radiology, pathology, surgery, and medicine all in the same room at the same time, alongside social work, physical therapy, genetics, and nursing.

Still, I remember being at a meeting of the National Consortium of Breast Centers, where a keynote speaker had related her experience with breast cancer. She mentioned that her case went to a tumor board, a concept she found scary and confusing. It had not been explained to her, and in her mind, she pictured cancer cells positioned around a table like military generals plotting their next move in this war being fought in her body. After someone explained what a tumor board was, she felt some relief, but also was left with one question: Why hadn’t she been invited to it?

Whether patients should come to tumor boards has been discussed at various points in my career. I can see how having the person present during her own case presentation could provide a more rounded perspective as members of a multidisciplinary cancer team hold their own deliberations. Typically, the patient’s attending will present the case—the patient’s age, diagnosis, history, exam—and then we’ll review the objective data—radiology and pathology. After that, colleagues will provide input on next steps, backed by their impressions of the latest data, oftentimes citing trials and relevant publications, before we come to a consensus. Sometimes, achieving consensus can be hard, especially when the data are not so clear. In those cases, it is not uncommon for voices to be raised as one party tries to convince the other; when things get heated, I am personally relieved that no patient—particularly the one whose cancer presentation provoked such a conversation—was present.

Beyond the mechanics, there are also the logistics to consider regarding a patient attending a tumor board conference, and they can be immense: privacy protections (when other patients’ cases are being presented that day), coordination, and timing are just a few.

At one of my prior hospitals, patients who wanted to be present when their case was discussed were welcome to join. The conference would be paused for a moment as a member of our staff, typically the nurse navigator or social worker, escorted the patient into the room. I remember one woman who attended: she smiled as she entered and was seated at the back of the room. Everyone in attendance acknowledged her presence, and then we went through her story, the imaging, and the pathology. I remember it wasn’t exactly a straightforward case of newly diagnosed breast cancer, but there was a striking lack of discussion. Indeed, many attendings did not participate. I did lend my opinion, but I remember being very careful about what I said, and how I said it—I did not want to risk upsetting a patient I did not know, or worse, arguing with a colleague in front of one of our patients. What strikes me now, looking back on that moment, is how the patient was also silent. I don’t know if the forum was intimidating, or if she was never asked to contribute. I have often wondered, what did she learn from being present in her own tumor board discussion?

Patients being present when their cases are discussed was a conversation topic that came up recently on Twitter, so I reached out to Dr. Kelly Shanahan (@stage4kelly) for her thoughts on the matter. Dr. Shanahan brings a unique perspective as both a physician and a woman with metastatic breast cancer. She was a practicing OB/GYN for 25 years, running a solo private practice for half of her career while raising a daughter. Neuropathy from chemotherapy for her metastatic disease cost her that career, and her daughter left for college, affording Dr. Shanahan the time to devote to a new calling: patient advocacy. She is passionate about patient autonomy and shared decision making, as well as making clinical trials more accessible to patients.

We had met on social media, but unlike so many other twiends, Kelly and I have actually met in real life. When I asked for her thoughts on tumor boards, she responded:

As a physician, I knew of tumor boards, of course, but when I was diagnosed with early-stage breast cancer in 2008 and went to the mecca 3.5 hours away from my rural, ski-resort town, I do not believe my case was discussed by a tumor board; after all, I had garden-variety ER/PR-positive, HER2-negative infiltrating ductal cancer, and my treatment course was pretty standard: surgery and then endocrine treatment. I decided to undergo a bilateral mastectomy and sentinel node biopsy. It was dictated not by the cancer but by my job and responsibilities: as a solo ob/gyn, I didn’t have time to drive 45 minutes each way for 35 days for XRT.

When the final pathology came back with one node involved by breast cancer, I underwent chemotherapy. Still, I don’t recall a tumor board review at all. When I was diagnosed with extensive (i.e., every bone in my body) bone metastases 5 years later, I couldn’t drive very far. Faced with a vertebral fracture and an impending fracture in my left femur, I stayed local and saw a community oncologist who came to our town 1 day a week. He certainly didn’t 1) encourage clinical trials or 2) discuss anything with a tumor board. In time, I stabilized and made my way to the mecca once more. But by then, I was doing OK—there was no reason to present my case to a tumor board.

Although my case was never discussed, I think that patients should be offered the opportunity to participate in tumor board discussions about their own case—and I don’t think the patient needs to be a doctor. True, the typical patient may not be able to understand all the nuances, but the patient is the expert on what matters to her. Getting input from the patient would, I believe, help the team recommend the best options for that patient.

Logistically, it could be difficult to include the patient, but the use of telemedicine platforms that protect health information could overcome some of the logistical challenges. I know they are already being used to connect academic centers to community doctors, so why not use them to get the patient involved?

Short of being present in person, there are other ways to engage us. Why not ask us to answer a questionnaire to capture our goals for treatment before presentation? I think this information would be useful as the board deliberates. Knowing what the patient wants from treatment is key to recommending treatments; some patients will prioritize quality of life over quantity, and those wishes need to be respected. Experiences with prior lines of therapy could also influence recommendations—and who better than the patient to express this?

Participating in a tumor board discussion might also lead to greater acceptance of clinical trials, as the patient hears why experts may recommend this route.

This degree of patient inclusion is certainly new, and I know there will be significant pushback from some, but I feel strongly that involving patients in their care and the decisions around their care benefits everyone. And I believe this from both my patient and doctor perspective.

I can see Kelly’s point of view. There have been many times when I wanted to know more about a patient whose case was being presented: Did she live alone? Was she independent? What did she expect from treatment? Sometimes, colleagues could paint a picture of the person beyond her images and pathology slides, but sometimes, they could not. Understanding who the person we are discussing is would be a benefit to us as clinicians participating in a tumor board.

At the same time, I do worry that clinicians will self-censor if a patient is present, which would negate the benefits of the discussions we have. It’s also important to understand that the tumor board aims to provide guidance, but it does not require that a patient or her physician follow it. At the end of the day, how a woman approaches her cancer will always depend on the shared decisions made between herself and her doctor.

So how can we resolve this? I liked Kelly’s suggestion of having the person be present, even if not in person. I personally don’t have an answer to the method by which this could happen, and I recognize that all patients may not want to participate. But I do think patients are interested in what is said about them, what options are discussed, and what the tumor board recommends. I think ultimately, it is up to each institution to consider the issue, and I know we must.

How are tumor boards handled at your institution? How can we be inclusive of our patients’ perspectives in these discussions?

Don S. Dizon is an oncologist who blogs at ASCO Connection. Kelly Shanahan is an obstetrician-gynecologist.

Image credit: Shutterstock.com