How do families usually react to receiving a diagnosis?

One of the first things I usually tell them is that the lesion is not a cancer, and that alleviates some of their concerns. Many types of vascular anomalies are not curable, so often I counsel patients and parents that although we may not be able to cure the lesion, we usually can successfully improve symptoms

Arin Greene, MD, MMSc

 

I think most of the time they’re glad they have a diagnosis, because a lot of the time it’s been difficult for them to diagnose what exactly it is. Sometimes the diagnosis is not favorable, and then it obviously is difficult. In the majority of cases, the families appreciate whatever you can do for them. I don’t think we’ve really had a lot of issues in terms of families becoming… you know a lot of these are conditions that are devastatingly are obvious in most cases. The only time is when we see them early and we think the prognosis is going to be worse.

Gulraiz Chaudry, MB, ChB, MRCP, FRCR

 

The families’ reaction to the diagnosis varies, and it depends on their expectations. I think most people are relieved to have an answer and a plan, because some had neither. However some people were told this was a lesion that would go away and we’re telling them it’s not. Also, some patients have been told for years they have a certain diagnosis and we change this. This has brought up interesting issues around how a rare diagnosis becomes part of a patient’s identity. With time and education, a correct diagnosis, and management plan is worth the initial reaction.

Cameron Trenor, MD

 

The majority of the families coming to the clinic would already have known about the diagnosis, as we request that they send us the clinical information ahead of time. However, the diagnosis is changed every now and then based on examining the patient directly. There is always a long introduction given to the patient/family before one changes the diagnosis already given. The majority of the patients/families handle these changes positively. A minority are not necessarily very satisfied initially with the change of the diagnosis, particularly if the diagnosis was established and therapy was planned based on it somewhere else for a long period of time. This may require some time to adjust and learn about the new diagnosis. There’s certainly some confusion about the new entity; but families typically start inquiring and learning about the new diagnosis almost immediately.

Ahmad Alomari, MD, MSc, FSIR

 

Of course, it depends on whether it’s their first encounter with a physician or they’ve seen other consultants. If it’s their first encounter, I explain the difference between a tumor and a malformation. Families and patients appreciate coming to a group such as ours that has a long history of trying to understand vascular lesions. They understand the differences between a malformation and a tumor. The word “tumor” often changes their impression, although we say the hemangioma is going to go away. On the other hand if we say it’s a malformation, it’s not going to go away and obviously they react differently. We explain to them that we have various options for treatment and they want to know what they are. It’s a matter of education. Clearly if you’re a parent and you tell them it’s going to be a chronic disease, a long-term problem, they’re going to react differently if they’re going to have to learn to live with it than if you tell them it’s a tumor that’s eventually going to go away, although it may be causing a major problem at present.

John Mulliken, MD