How long will I live with MDS? 

Survival statistics are helpful tools that doctors and patients use to understand the general prognosis for a specific type of cancer. While they cannot provide an exact prediction of individual outcomes or how long someone will live, they can offer some insight into the likelihood of treatment success. It's important to note that not everyone may be interested in digging into these statistics, and that's perfectly okay. It's a personal choice whether to explore this information or not, but many patients find it helpful in their decision making. 

One way to assess outcomes is through median survival, which represents the midpoint on a timeline. If you gathered a group of patients with the same cancer diagnosis, the median survival would be the time when half of them are still alive, and the other half have passed away. It's a way to understand the average or middle point, acknowledging that some individuals may live longer, while others may not reach that point.

What should I consider when looking at statistics? 

• Outdated Data: The numbers provided are based on patients diagnosed with MDS in the past. Recent advancements in treatment may result in better outcomes for individuals currently diagnosed with MDS.
• Prognostic Scores: The statistics are based on prognostic scores that consider factors like MDS type, specific blood test results, and certain chromosome changes in abnormal cells. However, other factors such as age, overall health, and treatment response can also impact the prognosis.

Revised International Prognostic Scoring System (IPSS-R) risk groups

This system was established before important MDS treatment advances in chemotherapy were available, but it is still relevant because the IPSS-R is based on cytogenetic abnormalities, age, blood tests like complete blood count, and the blasts percentage found in a bone marrow biopsy. 

According to the IPSS-R if you were diagnosed with very low risk the median overall survival is 8.8 years contrasting to very high risk which is 0.8 years. It is very important to consider that this estimate was calculated before many current clinical trials (with the main objective of prolonging life expectancy and quality of life) were started. Most of these trials are focused on high-risk and very-high-risk MDS patients. 

WHO Prognostic Scoring System (WPSS) Risk Groups 

WPSS can also be used to predict outcome, median survival and the chance that the MDS will transform into acute myeloid leukemia (AML) within 5 years. These statistics were published in 2007 based on patients diagnosed between 1982 and 2004.

According to the WPSS the median overall survival for very low-risk MDS is 11.8 years with 3% risk of developing AML in 5 years. Compared to very-high-risk where the median survival is 9 months and has an 84% risk of developing AML in 5 years. 

It is important to know that a prognostic score does not guarantee that time will be exactly what is predicted. Many factors, including new drugs, clinical trials, and better understandings of risk can affect prognosis, so you should not be discouraged with high-risk or very-high-risk MDS diagnosis. 

Currently, there are multiple clinical trials and medication advances that help to improve median survival with no progression to AML. Its important to consider that the reports on survival are not guaranteed and that researchers hope the survival extends with the novel medications available. 

In summary, survival statistics provide valuable insight into the general prognosis of a specific cancer type, but they should be interpreted cautiously. Recent advancements in MDS treatment may yield better outcomes than older statistics suggest. Prognostic scoring systems, such as IPSS-R and WPSS, consider various factors like cytogenetics, age, and blood tests to predict survival and risk of progression to AML. However, it's crucial to remember that these scores do not guarantee individual outcomes, and ongoing clinical trials and advancements in medication aim to improve survival and delay AML transformation. It's important to stay hopeful and consult with healthcare professionals for the most accurate and up-to-date information on MDS prognosis and available treatments.