Oncology doctors and experiences

What hospital do you go to? Is it a research hospital that has a blood cancer specialty? I was looking up MGUS that can progress to CLL. LPL reads to be a plasma disorder. Were you treated for the 4 years? I second the hope you get to the San Diego center. I hope your insurance allows. In the meantime, have you contacted the Sand Diego location to have them work with your insurance? My City of Hope often went to bat for me with the insurance company.

@katgob yes I was seen by another oncologist while I had Magus. Unfortunately, my insurance changed and I could not go to her. I’m on Scan Alta insurance with Scripps. When I went to the other 3 oncologist, it was at the Vista Oncology Institute in Vista, California. It’s a terrible place. Currently, my insurance is trying to get me approved with the cancer center in Rancho Bernardo California. I’m just waiting 🤔

@suzjlance
I sure hope your insurance will cover the cancer center. Sometimes Drs just do not seem to listen. I feel blessed to have started with the City of Hope. I have learned through others experiences so that we must advocate for ourselves. If your insurance is trying to connect, do you have a portal for your insurance to show what medical places you can go to? Blood cancers sometimes do not wait. Might you call San Diego to see if they have been contacted for you?

I chose to go to blood cancer expert at the University of Virginia, with the blessing of my local oncologist, and left with a complete understanding of my disease and treatment plan.

Strongly recommend you look into a medical expert in the for your cancer.

Hi @suzjlance ,
What you are experiencing sounds very frustrating! I do live in San Diego County, but do not have what you have. I am told a have a different blood cancer (ET or PMF) from two oncologist/hematologists and do not care to ever have another appointment with either of them. One was a MPN specialist! I hope your insurance refers you where you feel comfortable going soon. Please keep us posted.

@1pearl their working on it 😊 Thank you 🙏

Keep us posted all. Your experience helps us all. Plus, we give you encouragement. Bolster you up or help you find a new way to look at it. The wait means you keep yourself busy.

@suzjlance Just a CLL patient here, but some blood cancers can look a lot alike and they can usually differentiate them by looking at surface proteins on the cancer cells. CLL is usually pretty easy to diagnose via FLOW cytometry, but there are some tricky atypical presentations. Having said that, I think MGUS is a bit closer and more likely precursor to LPL than CLL though there can be overlap. I go to Mayo and this is the type of expertise they are really good at. I wouldn't leave this type of diagnosis nuance to a local community oncology clinic. Time to visit a major academic cancer center like Mayo or City of Hope.

Hi this is my understanding of your position. In a very simplistic overview CLL is usually CD5 positive (and typically CD23 positive), whereas LPL is generally CD5 negative and CD20 positive. So if your bone marrow report shows CD5 negative B cells with lymphoplasmacytic features, that may be why your latest doctor feels this is LPL rather than CLL. If CD20 is very bright (CD20++) then you should ask if Marginal Zone Lymphoma or something else is at play. If both are positive CD5 and CD20 then it may take a bit more work to figure out what is going on.

It might be worth getting the actual marrow pathology report reviewed at the cancer centre, as that should help clarify exactly what the abnormal B-cell population represents. LPL can sometimes be difficult to distinguish from other B-cell disorders. Maybe ask for it to be looked at by a Centre Of excellence. I am afraid that Heamatologists and Oncologists are like all of us, good and bad. These rare manifestations need a little more effort on their part, but it should be fairly easy to distinguish if CLL/LPL or a possible combination of both from your marrow report, but if unusual then an specialist maybe required.

Jon

It's very simple to look up the qualifications of any doctor as far as education, training, experience and expertise that can be tied to any published articles and their reception in the medical community. I go to a local hospital affiliated hematology-oncology practice, but the doctor I see has impressive credentials and several well regarded published articles. Not every local doctor is a country bumpkin and not every doctor affiliated with the large and nationally recognized centers is equally qualified. Ultimately, each of us has to have a certain comfort level with our doctors that only we as individuals can determine. Having faith in our doctors is a large factor in our treatment.