It’s been 3 months since I had my red blood cell count checked. With PV or polycythemia vera, a rare form of blood cancer, there isn’t really much I can do other than follow the protocols prescribed by my hematologist. For sure, I can continue to live my life fully, exercise (yoga, meditation, Netflix binge-watching), eat well (Haagen-Dazs is a great soul soother) and drink the occasional Sauvignon Blanc (for antioxidant benefits of course). But much of my blood test results or disease progression is really out of my slightly shaking hands and onto a higher source, if you believe in that.
The last time I saw my doctor, we were still in winter and I was wrapped in so many layers of warm clothing that I was sweating profusely, and looked and felt sick. This time, I was sitting comfortably next to my husband, both of us fitted in various forms of breathable light fabrics. While I was feeling cool in the waiting room, my nerves and fears were anything but chill, wondering what today’s appointment would bring.
The outcome was good, my numbers were stable, and we would not alter the current treatment plan. I asked my questions, and my doctor listened attentively and assuaged my concerns. But I couldn’t help but wonder, could another doctor or specialist have a differing outlook or prognosis? Is it betrayal or disrespect to my doctor if I were to seek a second or third opinion? Wouldn’t we all feel better knowing that not just one, but a team of experts, concurs and concludes with a correct diagnosis and how to handle it?
There is a doctor who as a medical student was diagnosed with an obscure incurable disease, yet with an unequivocal determination, he managed to somehow crowd-source the medical community and unite a global network of doctors, scientists and patients from around the world to find himself the most promising treatment. His name is Dr. David Faijgenbaum, and his story is truly miraculous and inspiring.
But for the average person, is this a realistic pursuit? Not all of us have that kind of commitment or resources to fly overseas to investigate cutting-edge treatments or clinical trials. The most common reason patients seek another opinion is that either their physician finds the nature of their case too complex and will refer them to someone more specialized or the second opinion could also be necessary if it could lead to a lifesaving treatment or conversely, stop unnecessary treatments. Sometimes patients may lack the assertiveness or even knowledge that it is their given right to request a referral for a second opinion.
In my ideal world, after getting some sort of serious diagnosis, the process should be like being on an episode of the hit HGTV series House Hunters where participants search for a new home or vacation property. Only here, once the initial diagnosis has been given, you should be immediately accompanied by a bubbly and intrepid patient advocate/doctor-realtor and whisked away to meet with two other esteemed and qualified doctors. After meeting with at least three potentially different doctors, and reviewing each one’s diagnostic procedures and treatment options, you should then be given the opportunity to carefully consider each physician’s bedside manners, merits, qualifications, and reputation before deciding which doctor best meets your health and medical needs.
But unfortunately, our life is not a reality show, despite some days being full of drama and interspersed with colorful surrealistic elements. The best advice I received is that you should go with your gut when deciding whether to get a second opinion, and you must have confidence in who you eventually decide to stay with.
In the meantime, the important thing to establish is that your physician has expertise in your condition, has his/her ear to the ground for the latest research, literature and recent advances and is not stagnant in their knowledge.
With a diagnosis of an MPN, it’s very important that you foster a good solid relationship with whoever you choose to be followed by, and that your care and symptoms are monitored consistently from the time of diagnosis to treatment and then managed over a long and hopefully relatively healthy lifespan.