Raising awareness of the Cinderella of blood cancers
One small patient-support group is raising the profile of a group of rare cancers of the bone marrow
Julie Cahill, who suffers from myelodysplastic syndrome, at home in Dublin. Photograph: Dara Mac Dónaill
Julie Cahill: ‘I would sleep for about 18 hours and still be exhausted.’ Photograph: Dara Mac Dónaill
When Sinéad Mahon’s mother, Breeda Greaney, was told she had myelodysplastic syndrome (MDS) the family had, unsurprisingly, never heard of the condition. “She was feeling tired all the time and out of breath. Routine blood tests showed low white and red blood cell count and she was admitted immediately to Tallaght hospital,” says Mahon.
Following blood and platelet transfusions to improve her condition, Greaney, who was 58 at the time, was given a bone marrow biopsy to confirm the diagnosis. There followed a stressful period of seeking a match for a bone marrow transplant. But, luckily, a series of intravenous drugs improved her white and red blood cell counts enough that she did not need a bone marrow transplant. Five years later she is back at work and functioning normally. She still attends the hospital for check-ups.
Not everyone is as fortunate, as MDS can arise in different forms and degrees. Prof Helen Enright, consultant haematologist at Tallaght hospital, runs Ireland’s centre of excellence for MDS.
“It is almost the Cinderella of blood malignancies, because the average age of onset is 70. A bone marrow transplant is the only cure, but this is a very complex treatment and unsuitable for many older patients. The alternative is supportive care with blood and platelet transfusions, and drugs that stimulate bone-marrow function to improve blood cell count,” she says.
Essentially, MDS is a group of cancers in which immature blood cells in the bone marrow don’t mature into healthy blood cells. The cause is unknown in the majority of cases, but exposure to high levels of environmental or chemical pollutants might be a factor. Chemotherapy and/or radiotherapy treatment for cancer is a causal factor in 10 per cent of people diagnosed with MDS.
“The condition ranges from those with lower grade bone marrow failure and low blood counts to those who have a significant risk of progression to leukaemia,” explains Enright. Some 170 people are diagnosed with the condition every year in Ireland.
The issue is that many people with MDS don’t show precise symptoms, that would lead a doctor to consider the diagnosis.
“I am always spreading the message that older people with anaemia or low blood counts should be tested for it. A bone marrow test under local anaesthetic reviewed by a haematologist is what’s needed,” says Enright.
Some 10 per cent of patients will need to have a bone marrow transplant, and many of those are younger people with a more aggressive form of the disease.
Sinéad Mahon founded MDS Ireland following her mother’s diagnosis. “When my ma was diagnosed there was nothing about it in Ireland. I attended patient forums in London and Edinburgh to find out more. I set up a Facebook page, and sons and daughters of people with the condition made contact with us.”
According to Mahon, the value of the group is to give people emotional support for a condition that most people haven’t even heard of.
“The hospital doesn’t deal with the emotional side of it. There are lots of different blood disorders, so it’s hard to meet other people with the condition when your family member is in an isolation ward.”
The key, according to Enright, is to have a full assessment of the characteristics of the presenting disease at diagnosis.
“If the patient is a candidate for a transplant, this needs to be talked about at the start so that he or she can be referred for a donor. If not, newer drugs [have become] available in the past 10 years that have improved the quality of life and survival of patients with MDS.”
World MDS day is on October 25th. See mdsireland.com for more details. See also mds-foundation.org and mdspatientsupport.org.uk A free information booklet is available to order from the Irish Cancer Society at cancer.ie or by calling 1800 200 700.
Julie Cahill: What it’s like to get MDS at a young age
The type of MDS that I got is more associated with juvenile MDS, which is the rarest form of it. I was diagnosed with it the week before my 20th birthday. For about a year before, I was very tired. I would sleep for about 18 hours and still be exhausted. I was pale-skinned and got chest infections every six to eight weeks. The diagnosis came about only when I was in hospital for something else, and the doctor started asking me lots of questions about my family history. For example, two members of my family had died of leukaemia.
I was given blood tests every two weeks for about two months to check my red and white blood cell counts. A haematologist at St James’s Hospital in Dublin recommended that I have a bone marrow biopsy. Within 10 days I got the results and was told that my condition might progress to acute myeloid leukaemia.
My other treatment option was a bone marrow transplant. As I had a very rare bone marrow tissue type, the first two matches weren’t great. In each case the donor dropped out four weeks before the transplant was due to go ahead. Luckily for me, a third donor – this time a much better match – was found and one year later I had a bone marrow transplant. I had high-dose chemotherapy and radiotherapy before the transplant, and a battery of other tests.
Following the transplant I spent six weeks in isolation and several other periods back in isolation again due to complications. It takes a full year to recover from a transplant. I completed my degree in photographic art but haven’t been able to work in that area because I can’t be on my feet eight to 10 hours a day. Instead, I volunteer part-time in Arthritis Ireland and work as a receptionist for a physiotherapy company.
After several years attending the hospital for weekly, monthly and twice-yearly appointments, I have to go for just an annual check-up now.
I have only recently made contact with MDS Ireland to offer other people support following my experience of the condition.