Finding a Good Oncologist
I am a former researcher, now a patient lawyer and I work in the pharma space. Even though I have more scientific background than the average person, it was difficult to navigate the information onslaught that comes with a diagnosis in the face of the emotional turmoil of those first few days. I felt like the little kids on Peanuts listening to the teacher who sounds like a trumpet.
I am very fortunate to have had the help of a fellow patient attorney who had by chance done work for a Stanford physician who is one of the best blood cancer docs anywhere and ended up finding a really spectacular doctor and getting into a clinical trial that has kept me phenomenally healthy for over 5 years. But the result could easily have been much worse had I continued with the first oncologist ("Dr. X") I saw.
Here is what I learned from my experience.
Finding a good doctor
See a clinician who works at a teaching hospital for your initial work-up and diagnosis.
For my initial aspiration biopsy, I asked the doc to order a FACS analysis, which gives much more information than the standard histological study. FACS analysis requires that the cells be placed in a special solution and that they are analyzed within 48 hours of sampling. The doctor assured me that they knew what they were doing. The pathology report showed otherwise - the cells had been placed in the wrong solution, and the sample sat over the weekend before being processed. The results were worthless, and the biopsy had to be repeated. Valuable time lost and LOTS of money wasted (I was paying out of pocket)
Find a doctor that listens
If the oncologist seems rushed and their words sound "canned," find another oncologist.
Dr. X literally ran into the examining room for my first appointment. I told him my background and asked him to give me technical explanations rather than the lay-person version. This seemed to throw him off. He talked a mile a minute and made chicken-scratch notes about treatment on a random piece of paper that was illegible. That happened the second time I saw him too.
Find a doctor that gives you options
If the oncologist fails to encourage you to seek a second opinion, and/or fails to inform you that you have options with respect to clinical trials, find another oncologist.
Ideally, your doc keeps up on the literature enough to be familiar with at least the most promising Phase 3 trials (it's not really feasible to be up on all of them unless they're a research doc themselves). If they're not, that's a bad sign. However, since cancer treatment is a big revenue generator for hospitals, encouraging patients to seek a second opinion may result in the patient going elsewhere, which is not in the hospital's financial interest.
My first doc ("Dr. X") was about 15 miles from Washington University Hospital, where Dr. Nancy Bartlett (a highly regarded CLL research clinician) is on staff. Dr. X never mentioned her, nor did he mention that there were a number of clinical trials for targeted therapies being conducted at Wash U. When my friend told me about her, I mentioned her to Dr. X, who seemed disappointed that I was going to see her for a second opinion.
Find an advocate, not a salesperson
It's really tragic - at a time when you are least capable, you have to take in and process information that's already challenging to understand and make decisions that could affect the quality and length of the rest of your life. Your doctor should be an advocate for you and not a salesperson for the hospital's for-profit services.
To sum up, teaching hospitals are a really valuable resource for getting a competent reliable diagnosis. Clinical research docs are aware of treatment options that non-research docs don't know about, either because they are early-stage or (all too common) because they don't keep up on the scientific literature. It may be that your cancer is one for which treatment is pretty clear cut, and you don't want to participate in a clinical trial, or don't qualify for one. But you should be made aware that trials may be an option.
What type of blood cancer are you or your loved one diagnosed with?