Anthony P. Conley, MD: Soft tissue sarcomas and bone sarcomas are essentially rare diseases that often require expert opinion. As such, I think that patients with a diagnosis of a soft tissue sarcoma or a bone sarcoma should be referred to an expert sarcoma center early in their disease course so that we can help the clinician maximize their patient’s chance of having a better quality of life, as well as hopefully a better survival. I usually recommend that when the patient’s diagnosed, that they reach out to our center. I think most sarcoma centers in America have different or unique mechanisms to help draw in patients early. That’s important because, oftentimes, there’s a lag time between the time a patient experiences symptoms to the time they actually have a diagnosis of sarcoma. This can sometimes impact their own quality of life, or their survival. Once a patient comes to see us in our center, we typically will ask the patient to spend several days with us so that we can order appropriate testing and seek expert opinion from some of our consultants, such as our surgeons, our pathologist and our radiation oncologist.

Oftentimes, we’ll discuss the patient’s case in the context of a sarcoma multidisciplinary conference, where individuals that only specialize in sarcoma will sit down and review the patient’s individual case. Then, we’ll try to formulate the best possible plan of care for that particular patient. And then, it’s really my responsibility to contact the referring physician to let them know what our recommendations are. Typically, this may involve a telephone call. Because our schedules may not always coincide, secure messaging that’s HIPAA (Health Insurance Portability and Accountability Act) compliant is recommended, so that way we ensure that the patient’s not going to have any loss of care as a result of recommendations that aren’t met.

Shreyaskumar R. Patel, MD: More often than not, the primary care system will get their local community oncology team involved—whether it’s a surgeon for a localized mass, or a medical oncologist for something that’s widely metastatic. This is the point where it can get a little tricky. The reality is, in day-to-day practice, the patient’s anxious. The patient wants some answers, real quick. The medical team wants to help them out. They will do the best that they can. That oncologist will then consult with their radiologist, and will get a biopsy done. The tissue ends up with the local pathologist at that community hospital, who takes the first crack at it and consults with some referral pathologists to try to confirm the diagnosis or at least confirm the subtype. At that stage, the referral may happen. Or, maybe the oncology team feels comfortable enough to treat the patient locally, within the community system.

Where should an academic center get involved? The ideal scenario would be, the earlier, the better. That’s a self-fulfilling prophecy, and I understand that. But, the health care systems that have made the most difference are the small nationalized health care systems. There’s a health care system in Sweden, for example. For any soft tissue mass that’s 5 cm or greater, they refer in to the local university in Lund. No community or private oncologists, or private physician will deal with it. That’s not practical in a country like this, with facilities available all around.

My recommendation, clearly, would be that as soon as a suspicion of sarcoma is entertained, maybe refer the patient at that time. If that’s not practical—because the patient cannot travel, insurance won’t cover it, or whatever the reason may be—then, the local team is going to do the very best they can to establish the diagnosis. But there should at least be a phone consult at that time to their regional local academic center to say, “Here are the details that I’m dealing with. What should I do next?” And more often than not, when I get a phone call like that, I will say, “What you say and what you have in front of you makes sense. Here are things that you can do in the local area. Keep me posted. I’m happy to help, as you go along the course.”

Or, I may say, “What you have just does not make sense. If the patient really can come, I would much rather you send the patient over. Let us take a look at things, formulate a plan in the appropriate way with multidisciplinary input, and then we can get back to you.” We can have a shared management plan. If the patient needed systemic chemotherapy, we would send them back with recommendations that they could get it in the community. They will get 2 cycles, for example. Then, they will come back for a scan, so that we can stay involved in the management of the patient and help guide the therapy. There are other instances where we are happy in making the recommendation. But the phone has to ring in my office for me to be able to help. I think that’s the key thing.

When does that happen? It tends to vary in different circumstances. And, again, to a certain extent, it’s up to the comfort level of the local team as to how comfortable or not comfortable they are dealing with the diagnosis and the treatment.

Transcript Edited for Clarity