New to Myeloma blood cancer

Hi, I’m 49 and decided to have a breast reduction privately before my 50th. My private surgeon ordered extra bloods ahead of this and I got a call from the haematologist saying he was worried that I had a spike in my proteins to a level of 9 and said that could indicate Myeloma. It blew my world apart. I had more bloods done and got a call in a Sunday night saying my levels had increased and I was now being referred to a Myeloma specialist. I have a phone consultation next week. I opted to pay private for this consultation to speed things up. I’ve had pain in my right leg for over a year so think this may be related. I am guessing I must have it but can they diagnose without a bone Marrow biopsy. My job is supporting people with terminal illness and am really struggling. I have no clue what to expect on Wednesday but fearing the worst and hoping for the Best.

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Hi @Dawnyp, yes, you have had an enormous shock and you seem to be on this rollercoaster now, the not knowing is the worst.
No wonder you say you are struggling, but the good news is that you have found us, we support each other on our forum.
You say you have an appointment on Wednesday and perhaps that gives you time to write down all your fears, thoughts, feelings, questions, practicalities, symptoms, relevant medical history, medications, allergies etc so you can cover every single thing you want to ask and have information to hand. I have also learnt to ask that follow up question and ask for clarification till I understand everything. I am no good at making decisions quickly so I ask for time.
If you would like to talk to someone you can contact the Support Services Team on 0808 2080 888 (10am-7pm Monday-Friday, and 10am-1pm Saturday and Sunday) or via email at support@bloodcancer.org.uk
Be kind to yourself and please let us know how you get on.

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Dawn,

wishing you all the best for tomorrow. Yes, they can diagnose from blood tests but always want others to confirm. I understand the shock as I was diagnosed at 54 but am still here aged 69 and living well. So do let us know how you are but the earlier they have found it the better. Take care. Joan

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Hi’ Dawnyp,
I am not a regular contributor on the Forum but I do regularly log in and read through the many posts. Your post struck me as like yourself my M spike was initially picked up by chance whilst I was under a different medical specialism and like you was then also referred not knowing what to expect.
Over the last 3 to 4 years I have learnt that Myeloma effects everyone in different ways and therefore its best to try not to naturally arrive at a conclusion and instead wait and ask as many questions as you need to (which I in hindsight did not) during your appointment with your specialist. What I have I learnt that there are no stupid questions there are just questions that aren’t asked !
I will add that you have found a perfect place to be able to ask questions and voice thoughts and concerns if and whenever you wish to do so. This Forum which is full of people with a shared experience and with it a sincere understanding.

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@Shaka I am so glad you read posts that is what the forum is also for.
Thanks for your experiences and such good advice, I wish I had read your post at diagnosis.
Please do post when you fancy, we are here to support you when you need it as you have just helped others.

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Hi Erica,

all “thanks” are duly passed to the Forum itself as without it there would be no home for contributors to reach out to Share and in doing so hopefully provide mutual Support !

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Hi @Dawnyp I was diagnosed with Myeloma at age 49 too after much prevarication from doctors saying that I just had a bad back and was being lazy. I initially had a set of scans to help give a complete diagnosis which were 2 MRI’s including a full body one, a CT scan and a PET scan. I did have a bone marrow biopsy but only just before In started my chemo. I won’t lie, it;s not pleasant but it’s really the only way to assess the current state of play. As others have said though do go to your appointment with a list of questions for your team. I had no idea what I was doing when I was diagnosed but you seem to be more clued up than I was. I hope it goes well for you and do check in back here and let us know how you’re getting on.

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More positive news. Been told it’s unlikely to be Myeloma but having a pet scan on hip and leg to rule out. More likely to be MGUS. Thank you all so much for your comments. It’s been such a worrying time but if it does turn out I still have it, I already feel supported so thank you and I wish you all well for the future xx

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@Dawnyp I’ve got everything crossed for you! Do keep us updated if you feel up to it. I am so pleased to hear how supported you feel by others on here :slight_smile:
Take care, Alice

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Thinking of you Alice and hoping that you are receiving good results.

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