Building Your Healthcare Team

It’s important for you to feel confident about your healthcare team and believe in their ability to treat your individual disease.  But remember, managing your care is a two-way street. Although there are many similarities, every patient is different – you are different – even your cancer can be different.  Consequently, the way your multiple myeloma develops and how you react to therapy will not be exactly like another patient.  So your oncologist and your healthcare team learn as much from you, your cancer and your body, as you learn from them.  Providing your complete medical history, including your past and present medical condition and lifestyle, is extremely important in helping your healthcare team take their best shot in caring for you. For example, pre-existing conditions such as kidney disease or impairment might make certain drug therapies inappropriate for you.  Your oncologist needs to know your full and complete medical history.

If, on the first visit to your oncologist, you need more information or reassurance, you may ask for another visit or get a second opinion from another oncologist to help you feel confident about the diagnosis or treatment plan proposed for you.  Your doctor may encourage it, and some insurance companies require second opinions in the treatment of multiple myeloma because it’s such a rare and complex cancer.

If you aren’t near a major cancer institution, it may be worth traveling to review your proposed treatment plan with a multiple myeloma expert. You also may find your oncologist is already working with myeloma experts at a major center. Because multiple myeloma is a rare cancer, the top institutions count on their colleagues in smaller cities, and even remote areas, to help recruit patients for clinical trials – and that network can help you receive state-of-the-art care whether you participate in clinical trials or not.

 

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Your Personal Advocate

A crucial part of your healthcare team may also include your own personal advocate – a friend, spouse or other loved one to accompany you to appointments, help take notes and ask difficult questions of your healthcare team. A multiple myeloma patient, James Bond, and his wife Kathleen wrote their questions down before meeting with their cancer team.  Kathleen joined Jim on his doctor visits to help ask questions and take notes.  This allowed Jim to stay focused strictly on what the doctor was saying. In addition, the Bonds recommend asking your doctor if you can bring a tape recorder to record what your doctor tells you as they found this team approach was best for getting the information correct when they went home to make important decisions. 

If it isn’t possible to have a family member with you, take a friend.  You don’t want to be so “snowed under” with data and options that you feel the situation is impossible to figure out.  Your personal advocate or companion can help you cut though the complicated details to form the questions that will help you decide with your oncologist how best to move forward.

The following list can give you and your personal advocate a starting point to help compile your healthcare team.

Things to Research Before You Meet with Your Potential Oncologist:

  • His/her experience treating multiple myeloma

    • Ask other people within the healthcare system for their impressions
    • Ask support groups
    • Search the internet for more information on this physician
    • Ask for referrals from other physicians
  • Quality of care available at his/her affiliated cancer center
  • Convenience of care and accessibility
  • Will they be covered by your health insurance policy?

Points to Consider for Your First Meeting with Your Potential Oncologist:

  • His/her perspective on treating multiple myeloma
  • Knowledge of ongoing clinical trials
  • Manner in which you and your questions are treated

GINNY
Oncology Social Worker

Ginny, on the importance of an oncology social worker as part of a larger healthcare team.

 

 


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PAT
Diagnosed with Multiple Myeloma

Pat, on how he assembled his healthcare team and the importance of asking questions

 

 


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WHO IS ON YOUR TEAM?

Nurses like:
Krista Tucker
Nurse and Educator

 
 
 
 

 

Letter from Nurse Krista Tucker

Myeloma Educator

I'm Krista Tucker, and I have been working as a nurse with myeloma patients for more than 20 years. As a multiple myeloma expert, I've learned that many patients don't have multiple myeloma symptoms until their disease has reached an advanced stage, so you may be entering this conversation with a prognosis that seems very intimidating.

I know the journey won't be easy. But sooner rather than later it's worth the effort to "Take Your Best Shot" -- to take charge of your disease by increasing your understanding of your multiple myeloma, surrounding yourself with people who can help and support you, and educating yourself on treatment options, right down to the financial aspects, so that you and your healthcare team can form a treatment plan that's right for you.

I've cared for many wonderful people with multiple myeloma, and I've seen many different approaches to dealing with their disease. I know how tough it can get, but it pays to stay positive! It's a journey that demands your energy, engagement and determination. You've got to take charge and stay involved in your care.

You need to line up the best team possible to guide you through this journey! Choose your healthcare team and support your diagnosis. Then work through the details with your oncologist about what is right for you, and know that it's okay to get a second opinion when you have questions about treatment decisions.

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When Phil and I were dating we lightheartedly called ourselves "Team P&C" to represent our loyalty and support for one another. Deciding at diagnosis that we would continue to operate as a cohesive unit, Phil and I relied on each other as teammates and used faith, humor and open communication to navigate Phil's health challenges. Always willing to go to bat for one another or to pick up slack if necessary, we know what it means to make sacrifices and see things through.

Phil has a positive attitude and natural charisma which are a perfect match for my practical approach to life. Phil's genuine love of people and my strong empathy for both patients and caregivers inspired us to connect with the myeloma community in as many meaningful ways as possible.