I’m one in a million. Well…not exactly “one in a million.” I have polycythemia vera (PV) which is considered a rare cancer. According to the National Organization for Rare Disorders, the chance of being diagnosed with PV is around 2 in 100,000.1 There are other organizations that cite the incidence of a PV diagnosis either higher or lower. Regardless of what the current statistic is, very few people have this cancer.
When I first found out all my blood levels were high, and before I was seen by a hematologist for diagnosis determination, I consulted my “Google doctors.” PV was listed as a possible reason for elevated blood levels but I quickly dismissed it. I read that it was extremely rare and was most prevalent in men over 60. Since I was in my early fifties, had none of the listed symptoms and I was definitely not a man, I was convinced I didn’t have PV. Needless to say, once I was diagnosed, I was quite shocked.
Icebreaker
There are some advantages of having a rare cancer like PV. It’s always a good topic of discussion at a party since no one has ever heard of it. When I tell people I have polycythemia vera, it definitely works as an icebreaker. Everyone is curious about what the heck PV is, what treatment I am undergoing, and what my prognosis is.
Having PV also gives me the opportunity to educate medical professionals. When I mention that I have PV to a new doctor, they often look perplexed. I know they are trying to reach back into their medical school knowledge to remember. Once they do, they are typically delighted to have me as a patient and ask a ton of questions.
One is the loneliest number
The main disadvantage of a rare cancer is it is hard to find others with the same diagnosis. The tune “One is the Loneliest Number” by Three Dog Night goes through my head when I attend large cancer conferences. I’m typically the only attendee with PV.
Although there are multiple online support forums for PV patients, it’s not quite the same as meeting face to face to commiserate about common ailments. I have been known to enthusiastically “stalk” others on the online forums when I see they are from my area hoping they’d like to meet a fellow PVer. So far I’ve not had anyone block me or ask that I be removed from the site. Most are as thrilled as I am to connect.
Where’s the hype?
Because it’s so uncommon, there isn’t the hype and media attention that surrounds other cancers. With the exception of a couple of General Hospital episodes highlighting a PV patient a few years back, I’ve never seen it mentioned in any media forum. With breast cancer, for example, there are dozens of organizations, activities, cute slogans and even 5Ks. While there are a number of groups that do support PV awareness, I can’t say I’ve ever heard of a “Thin the Blood Campaign” or a “Poly V 5K” before.
Currently, there is research and clinical trials ongoing to aid in progression prevention and improve quality of life. However, it hasn’t been until just recently that strides have been made for new medications and treatments for the management of PV.
Las Vegas, here I come
Although I’m not technically “one in a million,” being diagnosed with PV is rare. With those odds, I guess I should be trying the lottery or gambling in Las Vegas.
This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Blood-Cancer.com team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.
By Deb Wesloh June 11, 2019
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I was diagnosed with PV at age 18. I was felt to be an extremely rare patient. I managed the disease 35 years and then developed myelofibrosis. I was told repeatedly my life expectancy was diminished and yet I’m still here although I can’t say my quality of life is anywhere near what it is for most of my peers. I have always felt like a square peg being jammed into a round hole.
I have a tough time with doctors giving us expiration dates. No one knows. Glad you’re doing well.
I agree!! Multiple Myeloma has a statistical date of 5 years of death expiration. Here I am 11 years in this game. This is where we as patients must also do our due diligence in opening up communication, in informing our doctors that either we do this together or we don’t do this at all.
My friend was just diagnosed with a rare cancer. She was able to find a specialist who was also in charge of clinical research for that type of cancer. She felt he would be the best because of everything was finding out about her type
cancer.
Good luck to you – and a buy a lotto
That’s great that she was able to find clinical trials for that type of cancer. Best of luck to her.
Interesting, yes that one is the lonely number is the truth for many of us. Multiple Myeloma was one of those rare disorders that are now not so rare. I’m happy there are new medications to try and stomp this (PV) out. It’s always crazy that the meds are in the works, but no clear indication of how we got in this mess in the first place. Best!
I would also like to get to the underling reason for my cancer. I’m always hoping that promising research would become available.
I know what you mean Ann. I would also like to know what caused my PV. I keep going back into the past and wonder what caused the JAK2 mutation. Was it the flu I had back a number of years ago or is it some hereditary malfunction that I was born with or was it something I ate or some medication I was on for an extended period or did age cause this mutation? Highly unlikely that I will ever know…unfortunately…
Ann, I couldn’t agree with you more. I think this is where those conspiracy theories come into play. I’m sure a lot of it has to do with environmental changes, food, and all that good stuff.
Although PV is rare it’s interesting on how many people, especially women, are on the PV forums. It makes me wonder if early diagnosing has improved, medications are allowing us to live longer (or feel better) or are there just more women on social media.
I do believe the numbers are up due to increased lab screening done by primary care doctors. When I was first diagnosed labs weren’t routine unless you had symptoms of some kind. It also wasn’t a blood cancer. It was considered a blood dyscrasia. It is good to see research is being done but because it doesn’t have the numbers of other blood cancers the research doesn’t get big dollar funding.
Hey Deb…
That is an interesting thought! We know when more women have involved the turnouts… work positively. LOL As for the social media, I believe everyone is on board, and that, all genders to share and get direct information from others.