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I am losing confidence in my oncologist. She has not given me any helpful information about my symptoms. I have gained more knowledge here!

A MyLeukemiaTeam Member asked a question 💭
Centerville, OH

My question is this; should I switch to a hematologist for more accurate information and diagnosis?

April 14
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Reactions
A MyLeukemiaTeam Member

Welcome to the club of finding your own answers? My doctor had time to talk to me each visit for 5 minutes. He would just tell me "don't worry?" After 10 months of learning about CLL and medication I requested medication when my WBC count was 76,000. My doctor did request a money grant from Leukemia Society which gave me $3400 per month for the co-payment. When I discuss my life with my doctor I do all the talking and he looks surprised with my good health and my knowledge of what is happening inside my body. I never had any gland lumps but I just discovered from a new doctor my spleen is enlarged which may be an ill affect from CLL? I hope you do not delay make a healthy choice after you have enough helpful information? Celebrating Long Life (CLL)

April 14
A MyLeukemiaTeam Member

Absolutely find another oncologist/hematologist Daidre. I’ve fired/changed 6 oncologists in the past 10 yrs of CLL. Also have fired 3 PCPs. Keep in mind that you pay them & they are not gods. No disrespect at all to those in the medical field, however, there are many that should not be practicing medicine. Advocate for yourself. If you are not listened & feel that your doctors don’t care, then find ones that do.

April 14
MyLeukemiaTeam

Should you consider switching from your oncologist to a hematologist for better information about your leukemia symptoms?

It's completely understandable to feel frustrated when you're not getting the answers you need about your symptoms. Your concerns are valid, and feeling informed is crucial to managing your health.

Show Full Answer

Should you consider switching from your oncologist to a hematologist for better information about your leukemia symptoms?

It's completely understandable to feel frustrated when you're not getting the answers you need about your symptoms. Your concerns are valid, and feeling informed is crucial to managing your health.

Here's what to consider:

Oncologists vs. Hematologists

Many people with leukemia see hematologists who specialize specifically in blood disorders. Some oncologists also have hematology training (hematologist-oncologists), but a hematologist focuses primarily on blood-related conditions, which is exactly what leukemia is.

Before Switching

Consider having an honest conversation with your current oncologist first:
- Bring a written list of your specific symptoms and questions to your next appointment
- Explain that you need more detailed information about what you're experiencing
- Bring a trusted friend or family member to help advocate for you and take notes
- Be direct about feeling your concerns aren't being addressed

If Communication Doesn't Improve

If your oncologist still isn't providing helpful information after you've clearly expressed your needs, seeking a second opinion or switching providers is absolutely reasonable. You deserve a doctor who:
- Takes time to explain your symptoms
- Answers your questions thoroughly
- Makes you feel heard and supported

Many cancer centers have resources to help you find specialists. Don't hesitate to advocate for yourself—your health depends on having a provider you trust.

April 14
A MyLeukemiaTeam Member

I did not mention that my visits are mostly done on a phone since I am sent my blood test results which are very interesting and 100% good. During all my visits I seem to be doing 75% of the talking? I provide my situations and my educated guess about what is happening to me? After the past few years I have been given no input to help my health except for my request for medication. My doctor failed with my ill affect with the medication which I experienced for 7 months before my pharmacist told me my medication caused my ill affect? This group and other have provided me with much information to make my life more happy and healthy. Celebrating Long Life (CLL)

April 18
A MyLeukemiaTeam Member

I'm with the crew here. If you don't feel like you have a medical "team" relationship, that there is no transparency, or just flat no questions answered---find someone new. ( there is no harm in finding the right fit as this can be a long journey). Remember, its your quality of life, don't be at the mercy of your Dr, put him at the mercy of you. Feel free to post questions here, there are plenty of us as well as we are monitored by experts so we don't steer you astray. Huge hugs! Michele

April 17

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