I often find that doctors are rather flippant about PV, finding this from the first day I was diagnosed. When I received a name for my condition (PV JAC 2+) by the consultant I was told to see her registrar for my prescription. Even though I had finally been given a name for the symptoms I had been experiencing for 2 years I still hadn’t a clue what PV was.
I was ushered into another room where a prescription was given to me and I was told I had to have this dispensed at the hospital because it was a chemotherapy drug. My blood ran cold as I had only just got the all clear from breast cancer. I said to the Reg. “Do I have cancer?” I remember as clear as day his flippant response by saying “Oh yes, but it’s not a tumour or anything”.
I remember just looking at him and thinking how matter of fact I had just been told that my life was changing forever.
2 years later my life hasn’t changed at all except the pain and lethargy but I do still compare all medical consultations with that first experience and still find that medical staff are offhand about my condition. I put it down to their lack of experience with it. So, how did you find out?
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jillydabrat
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My haemo told me when I was diagnosed; the WHO re-classified MPNs from blood disorders to blood cancers in 2008. My current haemo doesn’t consider them cancers though, but that’s just him!
Hi - I had a similar experience. I was seeing my haemo for regular check-up post breast cancer and my platelets were high. He said in a off-hand way that it was "just a blood condition. Well, technically they call it cancer now, but it's not life threatening and there are no symptoms, so..." then shrugged dismissively. He also said HU was "technically" chemotherapy, but again, no big deal and no symptoms.
Given that I've had severe fatigue, breathlessness, brain fog, and overall diminished capacity, I wish he had been more serious and better informed. Like many of us, I had to do my own research to sort out what was happening to me. And for my doctor, it's not about inexperience with MPNs. When I talked about all of this with him. he said that in his 20 years of practice he's had a number of patients with MPNs but has never seen any symptoms or negative impact on his patients' lives.. Apparently, I've been the first to have both -- and he's still skeptical.
You're right about how different the two experiences were. When I was told I had breast cancer, my doctor was serious, sympathetic, well informed and up to date about the disease, the treatment options, the range of what I might experience, and future impact. Wish it had been the same with ET.
Hi, before I was rediagnosed with idiopathic erythrocytosis, I was told I had PV. The haem and team nor my gp told me it was a cancer. I actually read it on dr Google which I regretted doing but thank god MPN Voice was around at the time so I could share my fears, find out more about PV and realise I wasn’t dying! I really had to do my homework and find out for myself. As I said if it wasn’t for Maz and the great people on MPN Voice, I.e. all of you, goodness knows what state I would have been in.
For me, I wish the medics could have been more honest but perhaps that doesn’t work for everyone.
I was diagnosed 3 weeks ago, I got a letter a week befor that that had gone to my doc and he sent me a copy. I freaked out as I didn't know what Polcythaemia vera JAK2 positive was. I googled it scared the life out of me had to wait a week before I saw hematologist who calmed me down and said it was cancer but manageable. My bloods went down so didin't have to have meds there and then, I got my results from my blood test to day and my platelets are high so they have put me on Hydroy 500 every other day and to have another blood test in 2 weeks, and so begins my journey x
Very unprofessional whoever told you it was cancer. I have had this fir 28 years and most of the time on chemo treatment ie interferon injections and hydroxy. It is not cancer. It has never stopped me travelling and I still have my holiday insurance with no extra charge b
Have a look on the Macmillan cancer site. Whoever told you it’s not a cancer is wrong. The WHO reclassified all MPN’s from a blood disorder to a blood cancer in 2008 ask anyone on here and they will back me up
Well Jillydabrat if this is true I have living with it since 1991, nearly 29 years. I have never been told it was cancer and I was never told that the drug I have been taking was a chemo drug. I have some side-affects from and have other non related health issues, including a heart attack 6 months ago, caused my my haematologist changing my hydroxy to Anagrelide causing my platelets to hit nearly 900. This has not stopped me travelling and has not affected my travel insurance.
Morning Townie, I hope by now that you have looked at the WHO information and the MacMillan Cancer site. Please be careful with your health insurance because if you don’t tell them you have a cancer and you need medical attention in another country they may not pay out because your condition is undisclosed. PV can be a condition you can live a relatively long life with so just because it’s classified as cancer (not by me, which you seem to be insinuating, but by the World Health Authority!) it doesn’t mean a death sentence. Only a small percentage progress to MF and AML.
Hydroxy IS a an oral Chemotherapy drug and your box should have this warning on it. You should read the instruction leaflet that comes with the drug, if you haven’t had one then ask the pharmacist next time you get your medication.
I am, or we are not trying to frighten you about your condition or medication, we are just trying to inform you. As I said earlier, check on the WHO site and the MacMillan cancer site for confirmation.
I am not going to argue with you, it’s up to you to get yourself informed or live with your belief but you will find your statements are wrong and I am sure others on this site will confirm this also.
I have already told my health care insurer about this they have looked it up and are happy to insure me, they are also insuring me after my heart attack 6 months ago. There is no reason to suspect that this condition is life threatening and no reason that believe that we should not lead a long and normal life!!!
Which is what I said. You seem to be changing your argument every post. Nobody has said you cannot live a long and meaningful life and as you like the exclamation mark, here you go!!!!
I didn’t realise I was arguing I am just stating what I have been informed over the last 29 years. My haematologist starts getting agitated when I ask her questions and I am in the process of switching hospitals. I’ll say no more.
My team does not consider our condition to be life threatening but is infinitely managed through informative care.
Friends we are not in a world of uncertainty but it's a condition with scarey facts, It's how we react to it that requires us to be kind, to be vigilant and compassionate.
Getting our heads around the words is hard enough.
I was diagnosed with ET, three years ago.
My platelets are within normal limits and stable for the last 18 months.
Thank you so much for your post wotan10, and although I am fed up with having this condition, I am in no way frightened about it and I’ve had it long enough now.
Your are right Townie in the belief that MPN's are not normally life threatening in the majority of cases,it is the complications and them transforming into more serious things like AML is when they can become life threatening. Atb,tina.🤗
As people have said, MPNs are cancers. People have had payouts from critical illness insurance on that basis. People with MPNs receiving any drug treatment (even low-dose aspirin) are eligible to apply for a Medical Exemption Certificate if they pay for prescriptions. This allows you to have free prescriptions for any condition.
Like many of us responding to your post. I was just handed a leaflet, a prescription for hydrox & nothing much else. It wasn’t till I got home and read the leaflet that the penny dropped what ET was.
I got diagnosed with ET in 2008. My platelets were about 550-600,000. The first thing my doctor told me was not to google it and that is was a blood disorder, He never mentioned the word cancer. But he immediately put me on hydroxy and anagrelide. My numbers went down to the 300s, which is normal, So I stopped my medication on my own but ended up in the hospital for 3 days with a blood clot in my spleen. As my fatigue and dizziness increased over the years, I did some research and found out it was reclassified as cancer. I was diagnosed with PV about 3 years ago and started on Jakafi (Ruxolitinib) along with hydroxy. My hemo finally called it cancer when I told him I had cancer insurance but I couldn’t collect because now they can claim pre-existing condition. This is actually a short version but I didn’t want to take up too much space. If you look up neoplasm, you’ll understand why it’s called cancer.
Townie, I was diagnosed with PV a year ago, but think I've had it for about 10 years. My symptoms started literally within a month after I accidentally inhaled a large amount of insect fogger. I've often wondered how many others can trace their disease back to a certain incident like that. Anyway, the reason I decided to respond to this thread was because you said you had a cardiac event that was unrelated to your disease. I suggest you look up correlations between PV and cardiac events. Many people are initially diagnosed with this disease because of cardiac or thrombotic events. Unfortunately that was not the case for me. Approx 5 years into my disease I ended up in the ER and the cathlab, but they did not catch the disease. Even with years worth of high platelet readings they still failed to diagnose it. I continued to have chest pains even after having a stent put in and the cardiologist said either I was imagining it or it was muscular in nature. I'm not saying it was strictly the disease that caused my heart attack, but it was certainly exacerbated by my disease. Once I was diagnosed and started finally getting my blood counts under control the chest pains have finally gone away. There's a good article out there called "In Polycythemia Vera, 45 Is the Number". It's worth a read as it's referring to the importance of keeping your hematocrit under 45. My hematologist did not know this and always just went off my hemoglobin, which is not good enough.
Oh I am so confused. When I was diagnosed in 1991, I was first tested for diabetes, leukaemia and other blood related diseases and eventually they told me I had Essential Thrombocythemia!! Nothing else was mentioned. My platelets level was 990. I was put on daily interferon injections and had these for 8 years. My platelets settled down for the next 5 or six years and I was on aspirin alone. In 2006 they rose again and the hydroxy was started and continued until last year when a new neonatologist decided I could change to Anagrelide resulting in platelets going up to over 850!!! Result heart attack and two stents fitted. Now back on Hydroxy.
In all these years I have NEVER been told I have cancer. I am hoping to go to new heomatologist soon, as my present one seems to get agitated when I ask questions.
I've just seen my new haematologist last week after requesting a transfer. Old haemo wouldn't give you a straight answer and didn't appear to like you asking them in the first place. The trust you need to have in the care you receive from the person treating you needs to be strong, I had no trust or faith in him whatsoever left.If you don't mind me asking why are you in the process of going to a new haemo? Ata,tina🤗
I was told over the phone and said I'd have an appointment in six months and a book arrived a week later from bloodwise. No explanation therefore a horrible few days trying to speak to someone. As I needed answers to explain why my platelets had been high for over five years. Still feeling frustrated . On hydroxy I have a battle trying to find out whether I should continue each time it runs out although I ring a week before as requested. This time three weeks without hydroxy until my husband rang asking what's going on!
As I kept collapsing, headaches nightsweats white lights before my eyes etc.
That’s shocking that you have been left 3 weeks without your medication. Does your consultant know. I would phone two weeks before they are due and make your consultant aware of what is happening. It looks like things haven’t improved about how people learn about their condition which is really disheartening.
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How slowly does PV progress
Hi, does anyone know if it is safe to take vitamin D supplements if you have PV?
now my local Heme/onc says I have ET not PV and it matters how they treat me. 
How long did it take to come to terms with your condition?
How do you communicate your condition?
