Polycythemia vera (PV) is a rare, but manageable blood cancer. You may be diagnosed through a regular blood test by your primary care physician or by a specialist. Once you’ve been diagnosed with PV, you’ll want to see a hematologist.
Seeing a Hematologist
A hematologist is a physician specializing in blood diseases and disorders. While any hematologist will be able to help you with your PV, it’s a good idea to ask if they’ve ever treated anyone else with the disease.
Most hematologists who treat PV and other benign hematological diseases can be found at major medical centers. If you’re unable to visit one of these medical centers, you can also be treated by an internal medicine specialist who has remote access to a doctor with experience treating PV patients.
PV is rare, and about 2 out of every 100,000 people are diagnosed with it. After your first appointment, you should have a better understanding of what PV is and what steps you can do to manage it.
After it’s diagnosed and treated, PV rarely reaches the more advanced stage. Most PV patients are diagnosed over the age of 60 and live a normal life span. Although PV is a chronic form of cancer, it isn’t a death sentence.
Questions to Ask Your Hematologist
Once you have a better understanding of the disease, the next step is talking about your treatment. Your treatment will be determined by the stage of your disease and your ability to tolerate treatment.
Here are some questions related to treatment that you may want to consider asking your hematologist:
- How controllable is my disease?
- At what stage is my PV? Will it get worse?
- What is the goal of my treatment?
- What are the benefits and risks of treatment?
- What side effects can I expect from treatment? How can these be managed?
- If I am vigilant with my treatment, will I be OK?
- What is my risk of developing complications? What happens if I do develop them?
- What are my blood count levels? How can I control them and what are my goals?
- What is the response rate to various treatments?
You may also want to ask how often you’ll need to see your hematologist and if your insurance will cover the costs of your appointments and medication. You’ll also want to ask what lifestyle changes you can make at home to help with treatment.
Within the last decade, advances have been made in understanding PV. Understanding the relationship between the JAK2 gene mutation and PV was a major breakthrough in research. People are now being diagnosed earlier and receiving treatment sooner because of this discovery. Now, studies are being conducted to try and understand why this mutation occurs.
Living with PV is not only possible, but also manageable. Talking with your hematologist often and openly is one way your symptoms can be monitored closely, allowing you to live a better life with PV.