Diagnosedwithararebloodcancer–myjourneysofar.

ByWendyReichental

I will never forget the day I anxiously waited in the hematology/oncology waiting room, my heart pounding as I contemplated what lay ahead. My family doctor referred me here following routine blood tests as part of my yearly physical. Further blood work indicated that I tested positive for a particular gene mutation and that I have a myeloproliferative neoplasm (MPN), which stands for a group of rare blood cancers typically characterized by the overproduction of blood cells in the bonemarrow.

One of the million things running through my freaked-out mind aside from the immediate thought of, "Am I going to die?" was, "How did I get this MPN?" The jury is out on what causes an MPN; some scientific documents point to some environmental impact or long-term noxious exposure. I wondered if my mom's treasured but highly corroded aluminum pots, in which she so lovingly cooked many stews and chicken soups, could have delivered something more than comfort.

I received no real answers because the causes of an MPN diagnosis remain elusive. MPNs typically tend to be an older person's condition (sadly true in my case, as I was just about to turn 60), although they can occur in younger adults. I have an MPN known as polycythemia vera (PV), whichresultsinelevatedredcellmass.

As I sat in the chair in shock, I felt even more dismayed when my doctor rattled off several questions concerning any strange and unusual symptoms I might be experiencing. For instance, do I have any intense itchy skin following my shower? What about visual disturbances, fatigue, shortness of breath, headaches or sweating, especially at night? Well, I can tell you I was undoubtedlyprofuselysweatingnow!

My doctor saw my anxious reaction as he provided more details about my diagnosis and tried to assuage my fears by telling me that the 1970s hit tear-jerker movie Love Story, with Ryan O'Neil and where the main character, famously played by Ali McGraw, tragically dies of an undisclosed terminal blood disease, gave all blood cancers a scary, fatal prospect and consequently a bad rap.

This anecdote did nothing by the way to soften the blow. I was still in panic mode, but I appreciated the doctor's message that blood-related cancers have come a very long way since thenandaresignificantlymoresurvivabletoday.

While my doctor tried to assure me that it was possible to live an expected lifespan, he was also blunt, telling me there are no cures or remission with an MPN. There is also the risk that an MPN diagnosis might progress to other cancers, particularly acute myeloid leukemia. Unfortunately, doctors do not know why MPNs transition into something more severe in some patients than in others.

Treatment options depend on your specific MPN and the severity of the symptoms. I now have a different doctor at another hospital where I am more closely monitored and have blood tests doneeverythreemonthsalongwithultrasoundstocheckonmyorgans,specificallymyspleen which could be most impacted by this type of cancer. My current cocktail, which is unfortunately not served in a tall glass, consists of low-dose aspirin and a tolerated, but not without its drawbacks,chemotherapydrugtoreducecellgrowthrate.

As I absorb all the data on MPNs, I hope my story reminds everyone, especially women of a certain age, to prioritize their well-being and insist on annual check-ups, particularly getting their blood work done, which can identify and treat health issues before they worsen. I am extremely grateful to my family doctor who noticed something unusual in my blood work and referred me promptly toahematologist.MyPVdiagnosiswasthankfullycaughtearly.

In the meantime, I hope we continue to advocate for better recognition of these rare conditions and diseases and keep working together, pushing for easier access to a family physician, equitable healthcareservices,morediagnostictools,clinicaltrials,andongoingvitalresearch.

A global effort to expedite rare disease treatments and, ultimately, to one day find more cures is thekindofnonfictionmovieandhappyendingwecouldalldelightin!

Be sure to check out Heal Canada's newly launched digital magazine My Blood My Health, which covershematologicalissues,includingmalignanciesandotherhematologicaldisorders.