My GP referred me to a haematologist because of anaemia and some readings from multiple blood tests I’ve had done over the last 18 months (original visit that triggered the tests was for Reyaud’s Phenomenon, which was confirmed). He didn’t say why exactly, and I should of course asked, but accepted that I would just have to wait to be processed through the system and get an appointment. I was told this could be some time.
When I checked the referral in the NHS app I saw the actual internal referral document with a breakdown of symptoms and blood results. The letter mentioned Myelodysplastic syndrome (MDS) which obviously rang some alarm bells. Anyway, to get closer to the point, I ended up getting a private appointment two days later. Turns out the consultant was the same one I would have seen on the NHS, but he told me this would have been in 12 months. Said he wasn’t convinced it was Myelodysplastic syndrome (MDS) (“let’s just wait and see”) and another blood test was ordered, and a CT scan.
I had the CT scanner last week (a week after the initial consultation) and was told the results would be with the consultant the same day. I have another consultation this week, presumably to discuss the results.
After reading about the different types of blood cancer, I found that I got nearly a full bingo card of Multiple Myeloma symptoms.
Is a full body CT scan likely to show enough for the consultant to say yes, you have X, Y or Z? I’d expect there to be other tests, but would obviously like to know what I’m facing as soon as possible.
So sorry to hear that you are going through what we can imagine is an understandably worrying time.
Waiting for results can be daunting but hopefully you will hear back soon and a plan can be made going forward. If you would like to speak with one of nurses please do get in touch on 0808 2080 888.
We are sorry to hear that you are experiencing some symptoms you think may be related to multiple myeloma. We have a page on this which can be viewed by our link What is myeloma? | Blood Cancer UK
CT scans can show some elements of myeloma if this was present, for example it could show fractures or bone lesions however, this is not a definitive diagnostic tool for multiple myeloma as not everyone with this condition will have these issues present and for a diagnosis, a variety of tests need to be performed to confirm this.
These tests would include blood tests including usual blood panels, calcium levels, kidney function and additional blood tests such as paraproteins and serum free light chains. Urine samples to look for certain proteins known as the Bence Jones Protein and if deemed necessary a bone marrow biopsy. CT imaging, X-rays, PET scans or MRIs may all be used in addition to these tests to aid as a diagnostic tool, but one test is not used in isolation. These tests are also used in combination with symptoms/ medical history.
Thank you for taking the time to reply. In hindsight, I don’t know why I was expecting a full diagnosis after just one round of blood tests and a CT scan!
I just want to know what I’m facing so I can plan accordingly and get on with things as best I can, but more importantly to determine if there is enough of a diagnosis to let my not-so youngish children know, or whether my wife and I have to sit on things for longer.
Had the follow-up consultation yesterday. The CT scan showed no signs of Myelodysplastic syndrome (MDS), or anything else. I was told my iron was too low, that I was anaemic, and was asked if I was bleeding from anywhere. I said I think I might have noticed. The consultant doesn’t think my body is absorbing iron sufficiently. Asked I’d had low iron before. Mentioned that I distinctly remember being given iron tablets when I was 11 or 12. Now, too late, I’ve just remembered that I had to stop giving blood 6 years ago because my iron levels were too low. So anaemia is not something new.
Back on iron tablets. I’ll have another blood test in 3 months. If levels haven’t improved then he said he would collect a bone marrow sample. Pointed out that I still had night sweats and that most of my joints seem to ache, but he said there was nothing to be concerned about at this time. So, Christmas isn’t cancelled or going to be under a cloud. Still left with a nagging feeling though given my symptoms.
Some context: I have lost a lot of weight (I’m 67kgs and 1.8m / 6 foot), but have intentionally been eating well for quite some time (zero ultra-processed foods, no junk, stopped alcohol 2 years ago) and go spinning at least 4 times a week, so weight loss and “being trim” isn’t exactly a surprise, but I know it can be a symptom of things that are untoward. Also, I used to be first or second during sprints at spinning, but for the past 6 months or so I just cannot move my legs as fast. Also came to realise recently that I seem to be weaker when lifting heavy things.
I’m not a big sleeper either, but recently have noticed that if I nod off during the day it is quite a markedly heavy feeling, if that makes sense. I thought that might qualify as the fatigue symptom listed for myeloma etc.
Anyway, rambled on enough. Let’s see what happens after 3 months of spinach and liver.
