Hi Mark
Your experience is so much like my own I can so identify! I was diagnosed as smouldering in December. Unfortunately my diagnosis took somewhat longer than yours. My initial bloodiest was back in July last year and my para protein level was also 28.6. There followed some further blood tests which took an agonising age to come back. After that I had a bone marrow biopsy and a skeletal survey.
My paraprotein level and BMB results gave me the smouldering diagnosis. My skeletal survey was clear. I’ve also recently had a full body MRI scan for which I got results earlier this week. That, thankfully was also clear.
i cannot describe the stress of the last 6 months! To go from a routine blood test to that first appointment at the cancer unit….the agonising wait for test results. The bone marrow biopsy which, for me anyway, was a most unpleasant experience. Then there’s the mental aspect of it, which from your post I guess you are also experiencing. It’s a tough lot of information to deal with.
I actually felt relieved to finally get a diagnosis as I hate uncertainty. Yes smouldering comes with its own degree of worry but as an optimist….it could’ve been a lot worse! For now my consultant is going to see me every 2 months for the usual check up and tests and long may that continue without things moving on! I’ve spent my time learning as much as I can about the disease. There’s so much good information out there, not least on this site and in these forums.
You don’t say what age you are and I’m not being rude by asking I hope. My diagnosis took so long because I’m mid forties and the consultant was pretty sure when I first saw him that I was too young to have myeloma. I think that slowed my diagnosis up.
As an aside…..my MRI scan showed up another non-myeloma related problem. A mass at the side of my spine. What this is, is as yet unknown and I’m awaiting an ultrasound for further investigation. So more stress! I have honestly had my moments of wondering lately, in down times. If I hadn’t had the blood test, I wouldn’t know about the myeloma. if I hadn’t had the MRI I wouldn’t now be worrying what’s the mass at the side of my spine. Is ignorance bliss? I don’t think so. I believe we will both benefit from hitting the ground running here. Many aren’t so lucky.
Apologies for the novel. I just really identified with your experience. I hope you can get to a stage where you accept what’s happening and can live with it without the stress level you’re experiencing now. I never thought I’d get there either! But I have and so can you.
All the very best of luck to you Mark and I hope to hear more about how you are going on. Take care
