Hi, I have just been diagnosed with Myelodysplastic syndrome ('MDS'), after investigations for anaemia. It is apparently low risk, and I’m on active monitoring. Waiting for EPO blood test results to see whether that will help with tiredness/breathlessness.
Has anyone been diagnosed with this for a while who can give me some idea of their journey. I know everyone is different, but I feel a bit lost,.with not getting treatment. Thank you
Hi @Leew67 welcome to the Forum, though I’m sorry it took a few days to get back to you, and about the diagnosis that brings you here.
Being told you have a blood cancer but don’t need treatment straight away is a strange place to be, and feeling lost is such a common response to it. We’ve a page on active monitoring for Myelodysplastic syndrome ('MDS') that includes some personal stories from people on watch and wait themselves, which you might find useful: Active monitoring for MDS.
Hopefully some of our members who’ve been on watch and wait with Myelodysplastic syndrome ('MDS') for a while will see your post and share a bit of their own journey with you. I’m going to tag a couple of members who’ve been navigating similar territory recently - @Hepzibah and @Dance101010, so hopefully they’ll feel able to share a bit of their experience if they’re able to. (Please don’t feel any pressure to respond, but if you are able to contribute, it’d be very much appreciated.)
The MDS UK Patient Support Group can also be a good way to connect with others specifically going through Myelodysplastic syndrome ('MDS'), including local support groups.
Our Support Services team is there too if you’d like to talk any of this through - 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Do let us know how you’re getting on, and take care,
Ceri - Blood Cancer UK Support Services
Hi Leew67
I was diagnosed partially with Myelodysplastic syndrome ('MDS') 8 or 9 months ago. I say partially because my diagnosis is actually Complex Myelodysplastic syndrome ('MDS')/Myeloproliferative neoplasms ('MPN') so, as far as I understand it a cross over between the two. I have known for much longer that I have Eosinophilia - white blood cells off the charts.
For a long time I was having very regular blood tests and Haematology Consultant appointments, but as my physical condition hasn’t changed and the more recent blood tests were ‘odd but normal for me’, that is to say there was very little fluctuation, I have been put on Watch and Wait. I expect my next appointment probably in the next month or so.
I am someone who likes a name/label for an illness so I know what I am dealing with, or at least I can attempt to understand it. Unfortunately, I have found much of the information (and to be honest there doesn’t seem to be that much for certain blood cancers) to be too scientific/way over my head. So, having got a ‘label’ I found myself very lost. Suddenly, I was faced with the dreaded ‘C’ word, no treatment, little to no information, and a Watch and Wait situation. I didn’t feel abandoned, and I trust my consultant, but I did feel in limbo for a while until my brain accepted this course of action. Obviously, if I had an obvious change in physical symptoms then I could get an appointment for a fresh blood test and consult, but thankfully it hasn’t come to that! I should add that to date, I’ve not really had any of the known symptoms, or at least not ones that can’t be logically explained away for a woman of, let’s say, maturing years. I was encouraged to visit my GP because of a sudden loss of a large amount of weight, and that was what set the new search for what was going on with my blood. (I’ve always had a battle with weight but I wasn’t actively trying to lose any at the time. Sadly, the weight loss has stopped and realistically I could do with losing a lot more! Strange how life works out!)
Sorry, that’s all a bit long winded. I fully understand your ‘lost’ feeling, but I would encourage you to take it as a positive sign. If your symptoms change, or you think you are waiting a bit too long for your next appointment, reach out to your Specialist Nurse if you have one, or the consultant’s PA - I recommend putting your concerns in an email, and then if you are not comfortable with the response, request a face to face.
I hope you’ve managed to put your mind at rest a little.
Thank you, for your reply. It has been really helpful. Take care
@Ceri_BloodCancerUK
Thanks for the link to Myelodysplastic syndrome ('MDS') UK Patient Support Group. I don’t think I’d come across that one before so will now add it to my file.
Hi ! It’s confusing and worrying isn’t it? I have single lineage Myelodysplastic syndrome ('MDS') low risk, so I am severely neutropenic. I miss being able to swim. I also have psoriatic arthritis which is apparently linked. Fortunately I am with Kings for both now. Do get to a centre of excellence if you can. I also recommend the Myelodysplastic syndrome ('MDS') patient Support Group. They helped me enormously on diagnosis. Best of luck.