Hello new members @steffiney and @milo3986
Lori is very experienced and has a depth of information about bone biopsies for sure. I thought I’d throw in my thoughts about it for your consideration as I have taken a divergent path.
I have not had a bone biopsy. I was diagnosed…gosh my doctor told me last week it was almost 3 years ago. I hadn’t realized. Anyway, I have opted not to have a bone biopsy yet. I went in for blood tests every three months and my numbers have been relatively stable. They increase a little here…decrease a little there, but overall, they have been very stable. So stable, in fact, that my hem/onc doc has decided that I can have a six-month period this time between bloodwork.
The question that I asked my doc was… With numbers at this level, at what point would you start actually treating my disease as smoldering multiple myeloma or multiple myeloma? He told me that he would watch my bloodwork results and make a determination based on that, and at my current levels, he would not treat me any differently. It would be watch and wait regardless whether I was diagnosed with MGUS or smoldering multiple myeloma.
I know that at some point my MGUS can progress but I choose to wait on the bone biopsy until there is evidence of progression.
I am not afraid of the pain. I would certainly insist on sedation. I just don’t want to have it done for the benefit of a definitive diagnosis. I am asymptomatic and was diagnosed quite accidentally, just as most of us are. I have learned to live with the MGUS diagnosis with very little anxiety. I’m 71 years old and feel good, am happy and have an excellent life. I focus on blessings (in the secular sense) and not the what ifs.
At any rate, it is good to ask lots of questions and explore all your options. If your disease progresses or if you are symptomatic, then they will need to dig deeper. You can decide now to go ahead and do it or you can get a bone biopsy if your numbers get wanky.
Make sure you have found a physician you trust and who patiently answers all your questions.
Best,
Patty