A New Diagnosis of Sarcoma
The first visit
Obligatory—This is not medical advice
Patients need information. It’s vital at every point in treatment planning. There should be an open dialog. I don’t think that this can be over-emphasized. It’s so important that patients know what and why we’re making the recommendations that we are. Transparency allows patients to participate actively in their care. That said, it’s a two way street. I have to commit to the conversation and the patient, as well as their loved ones, have to commit to discussion in good faith. If the patient can’t trust the physician to be honest, the therapeutic relationship is broken. Likewise, if the care team cannot rely on a patient to report their medical history, follow up, or be compliant with medication, the treatment is compromised.
This is why by the time of my first visit with a new patient, I am always prepared. I have read the chart, taken notes, and already documented their history (insofar as it may be represented through the records available). It’s a sign of respect. This is the same as wearing a suit and a tie, which I still do—call me old fashioned. I don’t do these things because I enjoy them. I don’t find going to the dry cleaner fun. It’s part of a ritual that establishes the basis of what can be a lifelong relationship with someone. This relationship can be more intimate and emotionally intense than family, frankly. I need to be ready for it.
Personal beliefs aside, I’ll document here what I believe is necessary for a good first visit with a medical oncologist who sees patients with sarcoma.
The ‘What’ of the diagnosis
If we don’t know the problem we’re facing, it can be impossible to make the right recommendations. Sometimes, even subtle changes in the name of a cancer can have dramatic implications on treatment and prognosis. Knowing whether a small round blue cell tumor is a Ewings, Rhabdomyosarcoma, or even a lymphoma implies very different chemotherapy regimens, likelihoods of cure, and response rates. All of the details of this may not be known at the time of the visit, but they should be in process. Experienced oncologists will point out why this information is necessary. There are times when the details are not important, and oncologists will share that as well.
Here, I’ll put in the significance of having a reference center review the pathology. Pathology is a visual sport, and, for the time being, relies on human operators to ably name the condition. Data from Europe suggest that a diagnosis is changed in as much as 40% of cases.While, again, this may or may not have altered decision making up front, as our field continues to accumulate more information, distinguishing even minor differences could eventually have implications for treatment.
The ‘Where’ of the diagnosis
I have discussed this in other, more histology specific posts, but knowing whether this disease is something than can be cured with surgery, or not, is a defining question. This information is obtained with imaging nowadays. While there may eventually be some role for circulating tumor DNA, it is currently experimental, and any application of it really should be done following adequate informed decision making. It has been proven as a prognostic indicator for patients with some epithelioid malignancies, but utilization in sarcoma to inform care may be misguided—the majority of my patients who perform this testing tell me they regret it, so I want to underline that here.
These are the NCCN guidelines for imaging in soft tissue sarcoma. Super clear, right?
This is terrible even by oncology standards. The important thing to note is that most patients will be appropriately staged with a CT scan of the chest, and an MRI of the site of diagnosis. Additional imaging may be dependent upon the type of sarcoma (see #1 and why it’s important).
Imaging after definitive treatment is also an open question with recommendations based on expert consensus, as opposed to trials. At present, we are still answering this question for sarcomas of the extremities.I have told my patients that data for other tumor types shows that, at least for lower stage disease, increased scans does not always mean better outcomes. It does, however, definitely mean more scans. This is why it's so important to be frank about what we do and do not know. Imaging is often individualized with incorporation of these guidelines.
The ‘When’ of the cancer journey
Everyone is coming into your office at a different point in their story. There are times when I’m meeting an experienced patient seeking clinical trials. There are other patients who are still awaiting their final diagnosis. I also see patients who are transitioning from pediatric to adult survivorship clinics. It’s vital that we know where someone is, and where they have been.
From a medical oncology perspective, this includes the types of chemotherapy or other systemic treatments they have received. Have they gotten doxorubicin? What other agents have been tried? Have they been on a clinical trial before? While this can vary significantly, patient to patient, it is very important to make sure we know so that we can deliver the appropriate care.
Here’s ESMO guidance, even for a new diagnosis. For recurrent or refractory disease it’s that much more complicated.
How can you be ready?
So how do we get patients and doctors ready for the first visit? I have a template that I try to fill in. Below I’ve included a brief outline of how I organize this information. It’s not perfect, but it should give a basis that’s a useful starting point.
Date of Diagnosis:
Dates around time of diagnosis (include CT scans for staging, summary of findings, etc); a separate line for each event
This is the section in which I include laboratory values, full imaging reports, pathology reports, and sequencing information.