You or a member of the family or a friend have just been diagnosed with MDS. Hearing the term MDS or fully known as Myelodysplastic Syndrome, might be terrifying. You’ve undoubtedly got a lot of questions.
“How did it happen?” “How could I possibly get it?” “How am I supposed to go from here?” More importantly, “What should I do and who to consult?”
These are all relevant questions that must be answered to devise a strategy for obtaining a proper diagnosis, treatment options, and advice on how to live life despite the discovered condition.
But first, what exactly is Myelodysplastic Syndrome (MDS)?
MDS is a diagnosis that involves abnormalities in the blood cells of the bone marrow and is otherwise known as the “bone marrow failure disorder”. It stops the bone marrow from making enough healthy blood cells to circulate in our bodies, thereby hampering the healthy blood from optimizing the delivery of oxygen, hormones, nutrients, and antibodies to our organs.
It affects mostly the elderly population and tends to lead to acute myeloid leukemia (AML) if not addressed promptly. While MDS is not always fatal, it will cause the body to lose its ability to fight infections, with the possible end result being AML.
An MDS diagnosis comes as a shock and, along with it, immediate and long-term complications. The most prudent reaction would be to learn what steps to take next and how to access the best possible treatments.
What to Do If You Are an Adult With MDS?
That is the most difficult question to face but something that must be addressed if you want a chance at beating the condition.
However, you might want to understand the possible factors why you were diagnosed with the condition in the first place.
The risks for MDS include the following:
- You had past treatments for cancer (chemotherapy or radiation therapy)
- You were exposed to certain chemicals (tobacco smoke, pesticides, fertilizers, solvents such as benzene, etc.)
- You were previously exposed to heavy metals such as lead or mercury
What happens after you’ve been diagnosed with MDS?
Once you’ve been diagnosed with MDS, you’ll meet with your hematologist or oncologist to discuss the diagnosis, prognosis, treatment choices, and, if necessary, the treatment suggested for you. MDS, like any type of cancer, can cause a wide range of feelings, including worry, uncertainty, anxiety, and sadness.
The amount and complexity of the information you are given during the diagnostic process, and after receiving an MDS, diagnosis can be overwhelming. There are several methods for organizing your thoughts, questions, and concerns so that you may share them with your healthcare providers.
Treatment goals for MDS are determined by the type of MDS you have, how the disease affects you, and what treatments are available. The manner MDS is controlled can vary greatly.
The three main modalities of MDS treatment are:
- Observation
- Supportive Care
- Disease Modifying Treatment
You might consider bone marrow transplantation or participate in MDS clinical trials. It’s critical to understand your oncologist’s treatment suggestions, how they could affect you daily, and what the therapy goals are so you can ask questions and make an informed decision.
Myelodysplastic Syndromes (MDS) can have an immeasurable impact on the patient’s body, mind, and spirit. During any stage of MDS, the patients, their caregivers, and families may experience difficulties in one or more of these areas.
Patients with MDS can begin receiving palliative care as soon as they are diagnosed with the condition. Palliative care will be incorporated into your daily care by most health care specialists as they also want to focus on relieving the pain and suffering of individuals with this illness.
Palliative care can help you with:
- Treatment choices that are difficult
- Physical signs and symptoms, such as pain, nausea, vomiting, diarrhea, constipation, exhaustion, nutritional requirements, and so on.
- Emotional issues like depression or anxiety
- Social requirements
- Financial management
- Spiritual assistance
The patient’s needs, goals, and concerns will be identified by the palliative care team in collaboration with the patient’s caregivers. Palliative medicine takes a multidisciplinary approach to patient care, relying on input from doctors, pharmacists, and other healthcare professionals.
Nurses, chaplains, social workers, psychologists, and other allied health professionals collaborate to create a care plan that alleviates pain in all aspects of a patient’s life. The palliative care team can treat physical, emotional, spiritual, and social problems that develop with severe illness or incurable diseases using this multidisciplinary approach.
Palliative care teams are assigned to specific cancer centers or clinics, and other centers may have access to trained persons upon request.
Though further research on MDS patients is needed, studies demonstrate that palliative care can assist and benefit individuals in the early stages of the disease. Although palliative care is not intended to be a treatment for MDS, it can help patients, and their families cope with the disease and improve their chances of survival.
It is a very helpful way to get the information needed and take an active part in your MDS journey.