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Hi @milo3986 I was just discussing the bone marrow biopsy for MGUS with @steffiney who was also recently diagnosed with MGUS.
I know all of this just scares the socks right off a person…talk of potential blood cancers, bone marrow biopsies, treatments, etc.. I had a very aggressive form of leukemia 4 years ago and now in a durable remission and feel like nothing ever happened. Basically, ‘the worst’ happened and I’m alive, healthy and here to try to help others from living in fear ‘of the worst case scenario”. 🙃
Your MGUS may not progress or require treatment for many years as your doctor mentioned. So it would be awful living in fear for 10 years with ‘What if this happens?”. I know it all sounds frightening and you feel like you’re waiting for the other shoe to drop. But my attitude is that knowledge is power and this biopsy will give your doctor the facts they need to diagnose. You in turn get the facts you need to face whatever is necessary head on! I think we are our worst enemies most times with the stories we can tell ourselves of the worst case scenarios and most never materialized.
I’m going to reiterate for you part of the message I wrote to @steffiney regarding bone marrow biopsy for MGUS.
A bone marrow biopsy is a valuable tool for your hematologist to get a good look at the blood manufacturing center for your body.
The biopsy and examination of a core sample from the marrow and aspiration of peripheral blood can show whether your bone marrow is healthy and making normal amounts of blood cells. Doctors use these procedures to diagnose and monitor blood and marrow diseases.
Your doctor is trying to get the answers he needs to make a firm diagnosis for you. It can take a week or more to get a full report on all the in-depth testing of the samples.
I know you’re obsessing over this so I’d really encourage you to schedule the biopsy. Ask for sedation if you’re feeling anxious. It’s a lovely lala-land sedative so you have no knowledge of what’s going on…painless. ☺️
What do you think?? Isn’t it better to just get it over with?
Replies to "Hi @milo3986 I was just discussing the bone marrow biopsy for MGUS with @steffiney who was..."
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
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Lori, thanks for your response.
I am trying to stay positive. I heard from Dr today and we will be setting up appt for biopsy. I have symptoms that at 78 could be lots of things other than MGUS symptoms. I’ll know for sure.
So appreciate your words.