I think many patients and their families have been from doctor to doctor and place to place and sometimes state to state or country to country, hoping to trust whatever doctor it was they were seeing that day. Ultimately they may lose faith in the medical establishment overall because they’ve been given so many different answers, they’ve just decided that none of us know what we’re talking about. And so most of the time but not all the time, by the time they get to us, if they’ve had to travel, the reason they’re coming to us is because they’ve gotten information online or from doing their research to realize that their best chance of getting good information is in Boston, and so most of them have an open mind and are here and trust us. There are some with whom, I think, we have to build trust or get them to understand that we really do have confidence in what we’re saying.
Steven Fishman, MD
Approximately one-half of patients that we see in our Vascular Anomalies Center have had an incorrect diagnosis from an outside center or physician. When we clarify a diagnosis, patients and their families are satisfied because without a proper diagnosis, we are unable to initiate treatment.
Arin Greene, MD, MMSc
Receiving a different diagnosis can be difficult for some patients. With so many people tied into internet support groups and social media, often our patients have found solace with peers and families with a particular diagnosis. If our team then offers a new diagnosis and explains the rationale, it can be isolating and disappointing. Disbelief and anger are common. In these situations we work closely with our social worker to support them and help answer their questions over time. We have had instances where patients do not accept our diagnosis and continue to identify themselves by their original diagnosis. In either case we try to encourage patients to stay tied to our center or their local teams so they can have some continuity in their care.
Erin Spera, MS, CPNP
Often it’s a great relief. The patient with a long-standing chronic lesion who’s been told they have hemangioma all their life and they’ve looked up “hemangioma” on the internet, and they’re totally off-base. Then you tell them, “You haven’t got hemangioma, you’ve got a malformation!” Every patient wants to know what their lesion is. They deserve precise words and understanding of the natural history and the treatment. You can get the wrong treatment if your doctors use the wrong word or make an inaccurate diagnosis. For example, propranolol’s being used “like water” for hemangiomas around the world. Some are treating arteriovenous and lymphatic malformations and other tumors with the drug and there’s just no evidence it’s working. We would not expect it to work for vascular malformations.
John Mulliken, MD