Stories of diagnosis for MDS World Awareness Day 2022

MDS World Awareness Day - October 25th 2022

Some people, when being diagnosed with MDS, are not told by their healthcare team that it is a form of cancer, nor what level of severity their MDS is.

By not mentioning the term ‘cancer’ immediately at diagnosis, and not explaining low-risk vs high-risk, there is a risk that patients find out by chance, as soon as they look up any information after their initial appointment, such as on the NHS website. The shock of that discovery, when alone, and the lack of medical staff to check with can be traumatic for many. 

Not using the term ‘cancer’ also means that these patients might not receive the support that they are entitled to, such as knowing their employment rights and access to psychological and financial support. 

What was your experience? We'd love to hear from you. Send us your story at info@mdspatientsupport.org.uk and we'll add it to the stories below.

Your Stories of Diagnosis

caret-down caret-up caret-left caret-right

“My husband’s diagnosis came out of the blue.  Despite a week in hospital with critically low blood levels, being moved around different departments and subject to lots of different tests, at no point did anybody mention either MDS or cancer. To be told he had a form of blood cancer was a huge shock, especially as they said it was incurable which he took as a death sentence.  After six weeks of thinking he only had a month or two left to live, they said his MDS was lower risk and manageable, with a chance of a cure from a stem cell transplant.  Having hope again was amazing, but if that had been explained at the start it would have saved a lot of anxiety and heartache in those first few weeks”

"I stumbled across the MDS Patient Support Group while searching for answers following my MDS diagnosis. While the doctors were great and very supportive, I didn't feel I was getting the full story. The "c" word was never mentioned and I was frankly shocked that MDS is classified as a blood cancer when I found out through the MDS Patient Support website."

“I didn’t even know it was anything serious, I felt a bit tired sometimes but at 78 I put it down to old age creeping on.  MDS was diagnosed after a routine blood test for Type 2 diabetes.  I’d not heard of it before. The consultant described it as a pre-cancerous condition that might eventually lead to leukaemia, but it was manageable with injections, and they would keep an eye on me.  I felt very reassured.  After a few years the injections were increased to weekly from fortnightly but as they taught me to do them myself it wasn’t a problem.  I might not have been cured but had more energy again and was able to carry on with my life, including going abroad several times a year.”

“My husband’s diagnosis was found by chance after a routine blood test.  He is only 45, and very fit and well … wasn’t given the impression cancer was likely [prior to having a bone marrow biopsy].  Fortunately I was with him to hear the diagnosis, the consultant was very good, explained a lot and gave us time to ask questions which he answered clearly.  At this point we had no information about the risk ‘score’ and left fearing he wouldn’t see 50! We were more upset than we had ever been in our lives, and terrified”

A lady diagnosed in a Bruges hospital, after taking ill on a cruise, was very glad that the Belgian clinician acted so quickly and liaised with her local hospital in Scotland.  However the initial diagnosis had come as a shock, and it was referred to as a cancer. She is 73, diagnosed as High Risk, is currently receiving Azacitidine one week out of every four which she is tolerating well.  

“I felt that it was a bit brutal as I was on my own and it was a shock,” she says, “ I am so thankful that I was diagnosed so quickly [by the hospital in Bruges] and my treatment [at her local hospital in Scotland] started so promptly.  I have not asked for a prognosis [but] will take life as it comes, hoping that my treatment is effective for as long as possible”

Send us your stories of diagnosis

  • Were you told at diagnosis that MDS is a form of blood cancer?
  • If not, how did find out?
  • What was it like for you finding out in that way?
  • Were you told at diagnosis that there is a low risk and high risk of MDS?

Send your stories to info@mdspatientsupport.org.uk

Free donations by shopping