Where Should I START Following My Myeloma Diagnosis?
Where Should I START Following My Myeloma Diagnosis? from Patient Empowerment Network on Vimeo.
What should multiple myeloma patients do following diagnosis? Watch as myeloma expert Dr. Peter Forsberg shares care and support advice, and patient and Empowerment Lead Lisa Hatfield shares support that she’s found helpful and advice for moving forward to treatment.
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Transcript:
Being diagnosed with myeloma can be a big shock. Here are some key steps you can take from a myeloma expert:
Dr. Peter Forsberg:
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.”
Lisa Hatfield:
Well, to start following your myeloma diagnosis, I think the first thing that has to happen is you have to allow yourself time to take in that information from your provider, to think about it, always have another person with you to take notes. Because the shock of getting a cancer diagnosis can overwhelm your mind, and having somebody with a notebook and pen and can take notes during every appointment was really critical for me. My husband went with me, and it was a huge godsend going back and looking at those notes whenever I had to go to another provider to talk about my diagnosis. So I think having a person go with you, having a good medical team, some people prefer to go on the Internet and research myeloma. I did like to do that. I probably found too much information, but it helped me come up with a plan of what type of questions to ask my providers and possibly treatments. I wanted to understand treatments better. So I think trying to figure out your myeloma diagnosis, first start with your medical team, always have somebody with you, and just take your time trying to understand what the team is telling you. There’s usually not a huge rush with a myeloma diagnosis. You don’t have to act within 24 hours, so allow yourself some time.
