Social worker Marie Brewer talks about the challenges of supporting a loved one with myelodysplastic syndrome (MDS) and ways to find assistance and treatment options.
Myelodysplastic syndromes (MDS) are a group of conditions that affect the bone marrow. The stem cells in the marrow do not work properly, so they cannot make enough healthy blood cells.
Someone with MDS might have a low white blood cell count, a low red blood cell count, or a low platelet count. Sometimes more than one type of blood cell is affected.
MDS can range from mild to very severe, depending on whether some healthy blood cells can still form and the amount of buildup of immature bone marrow cells (blast cells). Depending on the type of MDS, someone may experience anemia, infection, easy bruising, or spontaneous bleeding.
MDS is a type of blood cancer. There are about
Healthline spoke with Licensed Master Social Worker and Information Specialist Marie Brewer at the Leukemia & Lymphoma Society (LLS), about how family members and caregivers can advocate for their loved ones with MDS.
This interview has been edited for brevity, length, and clarity.
I think the term myelodysplastic syndrome in and of itself can be overwhelming. So it’s important to recognize that MDS is a cancer diagnosis, and receiving a cancer diagnosis is often unexpected and devastating for patients.
It’s important to allow the patient to experience their emotions, even if it’s [those emotions] different from how you might react. Caregivers can start by communicating openly with their loved ones. Maybe the loved one isn’t ready to talk yet, and that’s okay. When they are ready, they’ll know that they’re able to talk [with] you.
It’s a good idea for caregivers or loved ones to help the patient develop questions that they want to ask during their doctor’s appointments. And to have those questions written down.
It can also be important to know: Does your loved one want a lot of information about their diagnosis and treatment options, or do they prefer to learn a little bit at a time?
A caregiver can help their loved one feel a little less overwhelmed so that they can focus on their health, which is really the goal, especially [with] a new diagnosis.
MDS is a group of [conditions] that affect the blood and bone marrow, which also means that there’s a wide range of presentations and severity and therefore treatment options. So every patient should be evaluated individually by a hematologist-oncologist who specializes in MDS and can speak to their specific type of MDS.
MDS is considered a rare diagnosis. So seeking treatment at a center that specializes in treating MDS or has experience treating MDS is crucial.
The information specialists at the Leukemia and Lymphoma Society can help complement your loved one’s medical care by providing free information and support resources throughout the entire cancer experience. We’re highly trained in blood cancers, including MDS so we can provide the most up-to-date information and the latest treatment. LLS information specialists are available by phone at 800-955-4572.
There are new advances in MDS treatment that are only made possible through clinical trials. The LLS has a clinical trial support center where nurse navigators work one-on-one with patients and family members to help identify clinical trials that they might be eligible for based on their specific type of MDS, not anybody else’s.
The kind of support needed will be different for each person, and it might change over time. So it’s really important to maintain open communication with your loved one and to be open to the feedback that you’re getting and the needs that they’re identifying.
Accompanying a loved one to a doctor’s appointment can be supportive on multiple levels, including emotional support.
When someone is diagnosed with a cancer like MDS, it can feel overwhelming. And when we feel overwhelmed, it can affect our executive functioning. So loved ones can help by doing things like taking notes and helping organize medical records, bills, and appointments.
Helping them complete financial assistance applications and looking for support resources — those are all things that might seem small, but can be really helpful to people.
Caregiving also has its own challenges. So it’s equally important for people who are caregiving to take care of themselves and seek their own support.
LLS does have a wide array of free resources to help with education support and resource navigation for patients and caregivers. We also provide one-on-one support throughout the entire cancer experience.
We also help people navigate the emotional aspects of this experience and the physical side effects of treatment. We can even help to explore financial assistance.
There are other organizations, such as the MDS Foundation, that provide MDS support exclusively. They offer a wonderful directory of MDS Centers of Excellence that can help find healthcare professionals who have experience treating MDS.
I want to ensure patients and caregivers that they’re not alone in this. When people are diagnosed with cancer, like MDS, it’s almost like having to learn a new language. So help and resources are out there, and I really encourage people to reach out to the Leukemia & Lymphoma Society, MDS Foundation, and other patient advocacy organizations that can help to navigate all these things.
Survival rates for MDS look at different risk groups based on the
According to the
The ACS published the following
- very low: 8.8 years
- low: 5.3 years
- intermediate: 3 years
- high: 1.6 years
- very high: 0.8 years
Survival rates are averages and cannot predict how an individual’s journey with MDS will unfold.
Advocates for people with MDS can access resources from nonprofits that support people living with blood cancers. They can connect people to medical centers that specialize in treating MDS.
With MDS, it’s important to manage the emotional, medical, financial, and practical impact on daily living. Support is available for those who need it.
Marie Brewer is a Licensed Master Social Worker and an Information Specialist at the Leukemia & Lymphoma Society (LLS). She started with LLS in April 2022. Marie has over 10 years of professional experience working with cancer patients and their families, mostly in hospital settings prior to joining LLS. She has held positions helping both pediatric and adult patients. Marie also had the privilege of developing an Adolescent and Young Adult (AYA) Oncology program, which is a population she is passionate about. In addition, she previously worked as the Clinical Program Operations Manager of a childhood bereavement center.