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Oncology doctors and experiences
Hello, I had MGUS for 4 years. I was diagnosed with CLL in December 2025. This was through bloodwork and a bone biopsy. My oncologist at the time was very vague, and it was hard to communicate with him so I changed doctors. The second oncologist said I had CLL and LPL. I like this Doctor. He communicated well, but then he left the Oncology center and went somewhere else. My third Doctor, who I just went to, states I do not have CLL and that I have LPL. I am so confused! I have contacted my insurance to see if I can go to the cancer center here in San Diego, California. I’m waiting for approval. Has anyone else had this happen to them? Any advice?
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Your point that not all country docs are bad or academic center docs are superstars is true, but when you are a hem/onc you first have to understand you may be presented with patients with a 100+ different blood disorders and there are likely some that don't fit neatly into a known presentation. You can't possibly be up-to-speed on all of them and need to be aware that those outside your comfort zone are best handled by doctors more likely to see more cases. Academic cancer centers see far more patients with vastly more diseases and have access to better labs and diagnostics on site than any local cancer center. Additionally, the pathologists at those large centers have researchers on site they work clinical trials and studies with who can help to better diagnose atypical disease presentations. I started my cancer journey at a nearby local clinic in the NYC area. After doing some basic research on current trials and drugs I quickly learned my local doctor was not up to speed as he didn't even know the new drugs being trialed and instead talked to me about 10 year old chemo regimen largely no longer recommended. I asked for a referral to Memorial Sloan Kettering and my world completed changed at the first appointment. I shared my experience with a disease expert at MSK and she said local doctors have a hard job, but they can't possibly be experts on every blood cancer nor keep up with the rapidly changing treatment landscape. She added, my disease, CLL/SLL is the only disease she treats because she too can't be an expert on multiple blood disorders.