Conflicting diagnosis-dealing with the doctors....

[Coping1]

I am new to this forum and am learning so much already!
I am seeing a hematologist locally and was recently sent to a BMT specialist. I have had a BMB locally and one at a BMT center. My hematologist here is convinced that I have myelodisplastic syndrome which will eventually lead to a BMT. The BMT Dr. seems reluctant to pin down a diagnosis. He says "in his heart of hearts" he feels it is MDS but it could be AA or hypoplastic myelodisplasia, but definitely some type of bone marrow failure.
He wants me to come back in 6 months for another BMB.
I have an autoimmune blood disorder that complicates things and the BMT specialist is worried that my blood disorder will significantly increase my risk of mortality with a BMT. My local hematologist feels that a BMT will eventually be my only chance because my blood disorder is triggered by infection and my white counts are so low that I keep getting septic. They seem to be a little at odds in my treatment plan.
I guess my question is, how do you deal with different doctors' opinions when you trust both doctors? I have known my doctor here for 30 years we have been through a lot together, but the BMT Dr. seems really thoughtful and straightforward.

Thanks so much for any insight you can give me!

~Coping

[Neil Cuadra]

Hi, Coping1. I hope you are indeed coping.

I'll be blunt. You can't always take a doctor's opinion at face value. Most of us trust our personal physician, but when you have a rare disease like MDS (or might have MDS) a general practitioner or internist isn't likely to have the necessary experience and up-to-date knowledge compared with a specialist who has dealt with many bone marrow failure patients. Since you've already been dealing with an autoimmune blood disorder, perhaps your hematologist does have the necessary experience. If not, you should consult an MDS specialist, even if it's just to get another opinion, but also to see if you can increase your confidence in the recommendations you're getting.

Meanwhile, going to a "BMT specialist" runs the risk that they have a built-in bias toward curing diseases with transplants, when other and less risky treatments should also be considered. The analogy I like to use is asking a painter if your house needs painting; they almost always say yes. Ask all of your doctors to explain the tradeoffs among all of the choices of treatment.

Even if you have to wait for the next bone marrow biopsy to find out what's happening or not happening in your marrow and especially whether it's changing over time, you should keep a close watch on your blood counts and a close watch for symptoms. I have a feeling you already do.

Sometimes when two doctors offer differing advice, it's worth asking them to talk to each other. They may be able to inform each other by comparing notes and discussing the ways they've been viewing your condition.

[Coping1]

Thank you for your reply.
It's actually my hematalogist who feels that the BMT is my only option-the BMT specialist is holding back on the diagnosis.
My hematologist has seen me hospitalized over and over with repeated sepsis because my WBC is so low- this then triggers my autoimmune blood disorder.
My plt, hgb and wbc are low and both BMB's have shown some type of bone marrow failure, they just can't seem to pinpoint exactly what it is, MDS,AA or hypoplastic MDS.
The doctors have talked to each other- it's just that one feels it's necessary to keep doing BMB's when the other one feels like the end result will be the same- a BMT.
My hematologist locally is the one who has to deal with my repeated hospitalizations so I guess she feels more pressure to actually do something.
I guess the good news is that I have two doctors that I like and respect.
Thanks again for your reply. This forum is wonderful!

[Coping1]

Neil,
Just to add a few more details, I have had two rounds of cytoxan therapy-one for two years in the 1990's and another for 18 months in 2010-2011, so the diagnosis they are leaning towards is secondary MDS. They found dysplasia in my first biopsy in June 2011, but my last biopsy in April showed hypodysplasia with 10-20% cellularity and refractory anemia with ringed siderblasts.
I was hospitalized 5 times in 2010 and 5 times in 2011 for sepsis and abscesses. So far this year I have been in the hospital twice. I have received multiple transfusions, platelets and while hospitalized needed multiple neupogen injections.
Just anxious to have some answers......

[Neil Cuadra]

Coping1,

I have a better understanding of your situation now. I can see why your hematologist considers a transplant inevitable, given the strongly likelihood that it's secondary bone marrow failure, after your prior cytoxan therapy. Statistics show that bone marrow failure resulting from previous treatment is less likely to respond to drug treatments. With a well-matched donor, a transplant could give you the best chance of success.

One question this brings up is whether or not you need a confirmed diagnosis. After all, a bone marrow transplant can cure either AA or MDS. But perhaps there are diagnostic differences that are important to know. I think it would be worth asking your doctors about this.

[Coping1]

I think this is what my hematologist is thinking, that the exact diagnosis doesn't really matter because I will need a MBT anyway. However, the BMT team feels it is necessary and the BMT doctor is afraid that a transplant might be too risky if I get an infection during the process and it triggers my blood disorder. My hematologist says I wil die from sepsis if I don't get a transplant. My counts aren't to the critical point yet but she is trying to get everything ready so when I get to the crisis point I'm ready-all very complicated.

It will be a year in June since my first biopsy and my counts are trending downward. When I am hospitalized with an infection they really bottom out and my hematologist feels I am just one infection away from a real crisis.

Thank you for you input. Reading this forum has been invaluable!