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Overwhelmed By a Myeloma Diagnosis? The Key Steps to Take from Patient Empowerment Network on Vimeo.
A myeloma diagnosis can be overwhelming and, in some cases, patients and caregivers may feel frantic or scared. Dr. Forsberg outlines clear steps to approaching a myeloma diagnosis. Want to learn more? Download the Find Your Voice Resource Guide here.
Dr. Peter Forsberg is assistant professor of medicine at the University of Colorado School of Medicine and is a specialist in multiple myeloma. More about Dr. Forsberg here.
See More From The Pro-Active Myeloma Patient Toolkit
Dr. Peter Forsberg:
I think being diagnosed with myeloma can be a big shock, so I think the first step is to sort of take a beat and work on getting the logistics of care lined up. I think the first thing you want to do is make sure you have a care team in place you’re comfortable with. That means support from friends and family. It also means providers you’re comfortable with. Usually you’re diagnosed by an oncologist and hopefully that’s somebody that you already feel a good comfortable relationship with.
I always think it’s worthwhile to consider getting a second opinion, another voice. And that could be even if you’re diagnosed at the most high-power academic center in the country, or whether it’s in a more community-type setting. I think having another voice just to make sure everything makes sense, that it seems fairly consistent, and that you understand things as thoroughly as you can. But you do want to get the ball rolling in terms of making a care plan and moving towards therapy if that’s the next step, without taking too much time.
So, I think it’s kind of a balance between making sure you’re really comfortable with all the participants in your care team, whether that’s one or more physicians if you have a primary and somebody else who helps to consult or guide as a more specialized voice. But also balancing that with moving towards the next steps in your treatment because often it is fairly time-sensitive to get going with management of the myeloma.
I think that the initial conversation can be a pretty complicated one. It’s one where we want to take plenty of time to work through a variety of different questions. I think some of the most important questions can be fairly open-ended ones. Ones that sort of help to take the conversation to maybe more broad areas. So, asking things like why. Is there a specific reason why we’re choosing this approach? What are the goals for our treatments?
So that everybody can try to get on the same page in terms of understanding what the rationale is, maybe making sure that nobody is missing anything in terms of what a patient’s goal is and that those are in line with the providers and that those priorities are understood.
I also think it’s important to ask pretty specific questions. I think lots of patients are pretty good about that in terms of trying to nail down expectations for logistics of medicines, things that we should expect as we start with treatments. So, I think it’s a balance between making sure we get into those fine-tuned details as well as taking a step back and asking those broad questions so that everyone can make sure that they’re seeing things in a similar way.