For individuals, friends and families who are looking to connect during life's challenging times. Share personal experiences, evaluate information and get support during times of need, illness, treatment or recovery.
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well, the prognosis is very
well, the prognosis is very poor. DLBCL is a malignant cancer. unfortunately, no one can say with any certainty how long a person will live following diagnosis. too many factors are at work-- such as the overall health of the patient and the stage of their disease at the time of diagnosis. i know it's not the answer you're looking for, but anyone who says they can tell you the answer with certainty is not to be trusted. at best, doctors make educated guesses on these things. it's the question everyone has and the answer no one has.
My husband was just told he
My husband was just told he has B cell lymphoma after his Urologist finding a lesion in his bladder while doing a cystocope for kidney stones. We haven't seen the oncologist yet and have a thousand questions swirling around in our heads. Dr. said it is rare to find it in the bladder and that it came from another part of the body. Has anybody else had something similar?
What has this doctor
What has this doctor convinced that this isn't a primary lymphoma of the bladder? Yes it is an extraordinarily rare subtype but it does occur. It was actually harder for me to find the bladder as a secondary lymphoma site than it was for me to find primary site info. it's just not a common extra-nodal lymphoma site.
My guess is that this is a so-called MALT (mucosa-associated lymphoid tissue) type lymphoma, and these are generally low-grade or indolent lymphomas with good prognoses.
I'm not saying this can't be an extra-nodal lymphoma that has spread to the bladder, of course I have no idea, I'm just not used to hearing about this.
I urge you to bring an audio recorder to the visit with the oncologist. Tell them you're recording it all, they should have no issue with that. And ask them to repeat things, again and again, until you understand. In other words don't act like you understand things or say "oh ok" when it's not OK. Take all this doctor's time as you need. and if you have more questions, you call them. Again and again if necessary.