Awaiting tests and so scared.

[jjc]

Hello out there,

After chatting about hrt to the GP (I’m 47) a blood test showed raised paraprotein. I was put on 2 week pathway and a haemotologist has told me I need an mri and bone marrow test to check for myeloma.

I am in such shock, I’ve been well & my other bloods were ok. I’m petrified as I have children and want to be here to see them grow up.

I guess I’m just reaching out for positivity or support really.

[rabbit]

Hi jjc and welcome to the forum,

Firstly, on your blood test. Paraproteins do not necessarily mean active myeloma. That all your other bloods are OK could well mean that you have MGUS. About 0.5% to 1.5% (according to AI) of 47 year olds have MGUS and for a high proportion of them it never develops any further.

Worst case scenario: some day it develops into active myeloma. As someone who was diagnosed with the worst of that worst case, people can live long, long lives with it these days. In 2022, I was told that I had high risk (= aggressive) stage 3 active myeloma. Earlier today, still in my first remission, I worked out in the gym for an hour. Yesterday I finished booking a holiday in Italy (I have been on lots of holidays in remission).

Since my diagnosis, I have seen my ‘kids’ (they are adults) make so much progress in life: studying, working, in one case talking about marriage! I have been around to help them, congratulate them when things have gone well, comfort them when things have gone less well…

Prospectively, many highly effective new treatments have been approved in the last couple of years.

Please feel free to post your blood test results here and/or ask anything you want.

All the best to you.

Regards
Rabbit

[jjc]

Thank you, I really appreciate you replying and I love hearing how well you’re doing. So hopeful!

My paraprotein points towards smouldering or active, but the haematologist said the only way of knowing for sure is to have mri and bone marrow check.

I’ve never been so scared in my life.

Xx

• This reply was modified 1 week, 4 days ago by jjc.
• This reply was modified 1 week, 4 days ago by jjc.
• This reply was modified 1 week, 4 days ago by jjc.

[jordan1974]

Hi JJC,

Nothing we can say will take away the shock and the fear that comes with this journey. Mine started summer 2026 and I just had my first 3 month follow-up after a smouldering myeloma diagnosis. It does get easier. Incurable blood cancer is a lot to swallow. It raises a lot of fears. It was hard to process when I first found out. My son was heading off to university and I was concerned whether I would see him graduate. It will get easier.

If you’ve not had the tests done yet here are my thoughts. The bone marrow biopsy does not really hurt more than it is just weird and uncomfortable. I imagine you have experienced more painful things in your life than you will feel from that test. As for the MRI it is not bad. I am not claustrophobic and frankly I took a nap. The one thing I learned was that when I was offered music and I said Jazz…. be more specific… the young operators chose something akin to elevator music. Mental note to self… make and publish my own playlist. The biopsy is about 20 minutes and the MRI takes 1.5 to 2 hours.

I spent a lot of time reading up on the disease, the treatments and the state of things in the NHS. Things are in a pretty good state and getting better every year. If you’ve not been given a diagnosis yet you still have 2 out of 3 chance it does not involve any treatment. Mine was caught early through other routine tests as well.

If it helps, I went from the “oh shit this is a disaster” to “ok, this is something I live with and get on with life” over a couple of months. Not an instant change but finding your peace with it is possible. I think it is important to find your peace with it so those around you can find theirs. Share your fears but also share information with those closest to you.

Jordan

ps. Depending on your results you will likely start to question every sniffle and body ache. That is normal and part of adapting. The best advice I got from someone that had it worse than my experience thus far. “Your doctors will tell you what is happening via your regular tests long before you feel anything”. That has worked out to be true.

[jjc]

Thank you Jordan. I’m sorry you had to go through all that just as your son was heading off to uni.

I also have teens and am so scared that my lifespan might be shortened now. The thought scares me so much at the moment.

Reading positivity does help though, so knowing you’ve done research & the other kind replies have been really helpful.

I think I’m right in saying that my diagnosis could go either way, it’s entirely dependant on the mri & biopsy results – the plasma level. I’ve had those tests now, and you are right, they were fine.

Speak soon xx

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