Haematologist doesn't classify MPN as blood cancer

[matthew]

I have recently been diagnosed with Myeloproliferative Neoplasm, based on the existence of the JAK2 mutation. It started off as a routine checkup after a long-term cough, followed by blood tests and then a visit to a private haematologist (1st haematologist I saw), who provided the diagnosis, did classify it as a blood cancer with the caveat that the classification is somewhat recent (past few years I think) and referred me for a bone marrow biopsy to exclude the possibility of myelofibrosis.

This is where the problems started. As it turns out, my private GP could not action the referral because of not having access to the NHS system, so I first had to register with a regular GP. After about a month of waiting, the process was finished and my new GP referred me to another haemotologist on the 2-week fast track.
This second haemotologist (never seen in person) denied the referral on the same day, a few hours after it was issued, with a response that only confirmed the Myeloproliferative neoplasms (MPN) diagnosis (which I already knew), said that they DO NOT classify it as a cancer and thus the 2-week fast track is inappropriate, did NOT make any mention of a biopsy to figure out which type of Myeloproliferative neoplasms (MPN) it is and whether or not it could be Myelofibrosis and recommended a general referral to their clinic. What I just found out on the NHS app is that this new referral will be actioned by the 23rd of April, so 2 months from now.

I am at a complete loss at everything that has happened… On one hand I have a haemotologist saying I have cancer and we still need to find out how bad it is, on the other - a haemotologist that says that it is not cancer, that all I’ll most likely need is some aspirin and venesections and that I’m fine to wait months before I even see someone about it.

Anyone here have some thoughts on why there seems to be such a vast difference between two specialists? I’d be fine with the truth being that this isn’t as urgent as it first seemed, but this situation doesn’t exactly inspire any confidence in me going forward.

[Erica]

Hi @matthew welcome to our forum a question that is often asked and I attach the Blood Cancer UK and Cancer Research pages on the subject.
What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Myeloproliferative neoplasms | Cancer Research UK
I expect this has caused you a lot of confusion and frustration and feel at a complete loss.
I hope this helps you.
The Blood Cancer UK support line is also there for you on 0808 2080 888.
I look forward to hearing more about you and how you get on.
Really look after yourself

[Happy2019]

@matthew
Firstly hello.
I was diagnosed last February with Essential thrombocythemia (ET). That consultant said, in his words when I asked him if I had cancer was yes, but it’s a good one!
The second consultant I saw said it had only been put into the cancer category a short while ago and it’s in that category because of where it is and what it can lead too. He said in his view it’s not but it has to be labeled as something and that was it. Equally he said that the drugs I will end up going on, although they are chemo, they arnt the chemo that we all know and read about.
For me that helped me come to terms with it as I really didn’t want to think of it as cancer as we know it. After speaking to my gp at length she has said much the same.
It’s frustrating that every consultant you see says something different, they have all got their medical degrees so what say different things.
In my head I know what it is but I tell myself it’s never going to kill me like other ones would so that gives me some piece of mind.
I hope the above makes some sense as I feel I’ve just waffled on.

[matthew]

Your experience pretty much matches my own, as well as my understanding of how serious or urgent this is. It’s just frustrating to read up on the diagnosis, including in the information that Erica shared above, find that every place where it’s mentioned it’s classified as a blood cancer, to have a specialist call it a blood cancer and give me the exact same speech you got about it being a fresh classification because of what it COULD lead to, but then when it comes time to actually do something about it, find out that “actually” it’s not classified as such.

By this point, it’s been 3 months after the diagnosis with absolutely nothing happening and now I’m faced with another 2 months of the same.

Can I ask, though, if you went through the NHS system for all of this, or if any of this was handled private? I would like to understand what options are available, in case I decide I don’t want to wait any longer.

[Willow]

Hello @matthew. I sympathise with your frustration and the way you have been left waiting longer than you should for an appointment. The World Health Organisation (WHO) classified Myeloproliferative neoplasms (MPN) as blood cancers in 2008 because the bone marrow produces blood cells in an uncontrolled way. I have the Myeloproliferative neoplasms (MPN) Myelofibrosis which I have lived with for over 30 years. It has become a lot more complicated in recent years but considering I was in my early thirties at diagnosis I am grateful to have lived with it for so long. As far as I am concerned I would rather be told the true facts of the situation, ie, that it is a chronic type of blood cancer rather than a haematologist try to tell me something different! I appreciate however that some people may be alarmed. I think it is wrong to say that Myeloproliferative neoplasms (MPN)’s have only been put into this category ‘a short while ago.’ I wouldn’t call 17 years a short while ago! Maybe the haematologist needs to get their information up to date. I wish you well. Willow

[Duncan]

Hello there @matthew, welcome to the forum. I’m so sorry to read of your Myeloproliferative neoplasms (MPN) diagnosis and issues with haematologists not clarifying what you’re living with.

You’ve already received such great responses from fellow survivors of Myeloproliferative neoplasms (MPN) (hey there @Willow and @Happy2019!) and dear @Erica has greeted you warmly as she does with us all when we join the forum. I remember my own diagnosis with Polycythaemia vera (PV) being very confusing due to my haematologist telling me outdated nonsense like yours did with you, but Erica and other forum members kindly and swiftly pointed me in the right direction so I could find accurate information.

You’ve already had the great Blood Cancer UK information about Myeloproliferative neoplasms (MPN) shared with you above, and perhaps you know that it’s a family of blood cancers including Essential thrombocythemia (ET), Polycythaemia vera (PV), myelofibrosis and some other much more rare types. I’d say try not to google Myeloproliferative neoplasms (MPN) as information online tends to be generalised and inaccurate. Maybe stick to official blood cancer sites such as this for facts.

I’d say, despite not being a doctor, that waiting till April for your referral when you haven’t even had your type of Myeloproliferative neoplasms (MPN) confirmed is too long. Although Essential thrombocythemia (ET) and Polycythaemia vera (PV) are similar in many ways in how they can affect our bodies and what their treatments tend to be, we are all individuals and have our own specific symptoms and bodily reactions to these Myeloproliferative neoplasms (MPN). You need your specific type of blood cancer diagnosed so you know what your treatments will be.

At this early stage after a diagnosis with Myeloproliferative neoplasms (MPN) it’s important to know how high your haematocrit is (blood thickness/viscosity) as clotting is our main risk. I’d say waiting for another couple of months is too long for this, so I suggest you contact PALS to get your diagnosis and treatment sorted out sooner.

PALS can help advocate for your health needs and chivvy things along with that haematologist or department that doesn’t think you have blood cancer: Find patient advice and liaison services (PALS) - NHS

Regardless of whether your haematologist thinks your diagnosis is a blood cancer or not, you need your treatment plan clarifying soon so you can learn more about what you’ll be living with and how to fit the rest of your life around treatments and any symptoms you might have.

Do please consider calling the lovely specialist nurses you’ll see around the forum who also support us with any queries we might have. You can call them on 0808 2080 888 and honestly they will give amazing advice.

Please keep us posted about how you get on, any symptoms you experience, and any questions you might have. There are many of us around the forum living with Myeloproliferative neoplasms (MPN) so please don’t feel alone with what you’re going through @matthew.

[matthew]

Thank you, @Duncan

I was not aware of PALS and I can see that I can contact the service at the same hospital I was referred to (where the referral was denied). This is exactly the kind of service I was looking for, as what I need first and foremost is just basic guidance on what my options are and what I can do immediately.

Will get in touch with them immediately!

[Duncan]

Oh that’s excellent! Do please let us know how it goes. I might even be tempted to call the specialist nurses at BCUK first to talk through ways to make your contact with PALS even more helpful. But I’m very glad PALS looks like what you might need to help you get a clearer diagnosis.

Do keep us posted and don’t hesitate to ask other stuff that comes up in the interim. Maybe looking around the forum might put your mind at ease a little, seeing others not only surviving these Myeloproliferative neoplasms (MPN) but living well.

I’ll be keeping an eye out for your posts @matthew!

[Happy2019]

@matthew
All my appointments have been under the NHS.
So far I’ve seen 5 consultants. All different. The first one I have to say was by far the worst and just kept beating around the bush so to speak. The rest have been great. Listen to my questions and I do feel like they answer them honestly.
All had said it’s not a cancer like we know it which I’m reassured by.
I’m interested to know where people are in the country to see what areas are saying different things.
I’m in Hampshire

[Duncan]

That’s interesting that so many consultants have said similar things to you @Happy2019 about your diagnosis not being like cancer. My first haematologist told me Polycythaemia vera (PV) was not cancer when he diagnosed me with it and so I felt really confused as I’d already read research about what having the JAK2 gene mutation could mean, as in I was most likely to have Polycythaemia vera (PV). He also told me that the hydroxyurea he prescribed me wasn’t chemotherapy, at which point I stopped trusting his supposed clinical expertise.

I’m based outside the UK so my care is not quite so relevant to your question, but I have a close relative in Kent diagnosed with Essential thrombocythemia (ET) who has also been given confusing information about their blood cancer from their specialists. My dad in south Wales also got the run around by specialists minimising his concerns when he got tested (thankfully he’s negative for JAK2).

This recent thread from a new forum member also relates to whether Myeloproliferative neoplasms (MPN) are considered blood cancers and Nurse @GemmaBloodCancerUK kindly shared some great information: Not technically newly diagnosed but confused about definitions

I’m all for doctors gently helping me get my head around difficult prognoses etc but when they’re wrong and worse yet giving outmoded healthcare then it does make me wonder why so many aren’t keeping up with advancements in their field of expertise!

[Jonpd]

@Matthew Due to the rarity of Myeloproliferative neoplasms (MPN)’s many Haemotologist’s have limited experience of Myeloproliferative neoplasms (MPN)’s. Ideally you should be seen by a Myeloproliferative neoplasms (MPN) specialist or at least have one involved in your care. There is a list of Myeloproliferative neoplasms (MPN) specialists on the internet.

It is also worth looking at the Myeloproliferative neoplasms (MPN) voice website which has a lot of information on Myeloproliferative neoplasms (MPN).

[Jucoo]

Hi there,
I too have had several consultants and have been seen and had blood tests at 3 week intervals. The last one has referred me for a bone marrow biopsy but said I don’t need to see him for 3 months. This feels far too long and I’m really struggling. Incredible how they all vary isn’t it.
Jucoo x

[matthew]

@Jucoo Interesting, as I have just come back from my visit to an NHS haematologist, which I finally managed to get. In my case it looks like the bone marrow biopsy isn’t actually necessary as the Myelofibrosis diagnosis can be excluded based on my latest blood test, as well as the ultrasound that looked at my spleen size - long story short, there were no indicators that would suggest Myelofibrosis. So again, it’s a case of one doctor referring me for it, another saying that it’s not necessary, but at least this time with a proper explanation as to why it’s not necessary, so I’m OK with that.

[Erica]

Hi @Jucoo and @matthew I always liken it to a court case when both sides have expert opinions that contradict each other.

[Duncan]

May I ask if you were told what your diagnosis is, if it’s not MF? It’s very helpful to have this information as Myeloproliferative neoplasms (MPN) do vary in their symptoms, treatments, and prognoses.

From my own diagnosis and subsequent reading about Myeloproliferative neoplasms (MPN) and how they can affect us, I understood that they can’t be definitively diagnosed without having a BMB first. Blood cells need to be seen at their bone marrow source to detect how they’re misbehaving, and to which of the Myeloproliferative neoplasms (MPN) they most closely match.

Of course defer to what your haematologist says but do keep asking questions about what you’re living with. I’d want to know more specifics to relieve anxiety about any unknowns!

Glad you were seen sooner than April though @matthew, that’s got to be a relief!

[matthew]

The current diagnosis is Polycythaemia Vera, which is also something the first haemotologist said was the most likely one.

By the way, the reason I was seen sooner than April is because I hassled my GP to issue a new referral to another hospital to see if the outcome there is going to be any different. Turns out it was and they booked me in for a visit after just a few days.

[Duncan]

Oh that’s so great that your efforts got you that referral to a different hospital! I know it’s not easy to question these experts but sometimes we need to. Look at how you now know what you’re living with thanks to asserting your needs. Good stuff!

I am really sorry you’ve been diagnosed with Polycythaemia vera (PV), although you’ve found a place where many of us meet and share how we’re getting on, as you know.

Here’s the Blood Cancer UK information about Polycythaemia vera (PV) which I found really helpful and weirdly comforting after my own diagnosis: Polycythaemia vera (PV) | Blood Cancer UK

Welcome to the Polycythaemia vera (PV) club @matthew, although I bet you’d rather not be a member!