I was contacted by Cancer52 earlier in the year about what problems, if any, had I experienced having a rarer cancer. Two weeks ago I did a zoom interview about having an MPN. I explained the difference in care that I had experienced when I was diagnosed with breast cancer and when I was diagnosed with PV. I talked about the lack of familiarity of the illness that I had found in more than one medical professional and the difference in care from one GP to another. I mentioned the times I had to tell a doctor that if he did not recognise PV as a cancer then they should look up the illness in the WHO guidelines.
They are contacting a number of people who have lesser known cancers to put together a video which they will also be presenting to parliament in the coming months.
I am waiting to get the draft interview then the final draft will be put together.
I will let you know how it goes. I just hope I put the MPN case across okay.
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jillydabrat
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That sounds really great Jill. Well done ! I hope this does go to Parliament and a lot more in the medical profession will be made aware of MPNs and their symptoms and treatment. I too found the breast cancer team much more informative than Haematology. Looking forward to hearing how it goes. xx Fran
Interesting to see that two of you have had breast cancer? Possibly just a coincidence of course, but just wondering. Was this before your mpn diagnosis? I had early breast cancer back in 2010 with extensive breast surgery needed until 2012. When i had a stroke in 2018 my consultant asked me did i know my platelets had been high since 2012. I was diagnosed with ET shortly after. I've often felt there was a link.. Who knows?
I’ve often wondered that too when I heard that Jill had had breast cancer too. I was diagnosed with ET in the March as new GP noticed my platelets had been rising for about 2 or 3 years and had it checked by Haematology. Two months after, in May I discovered the breast lump. Regards Fran
I feel like raised platelets etc seem to be ignored alarm bells should ring straight away and more need to be highlighted and what to look for in MPN cancers.
Hi jilly, this sounds really interesting, I’m sure you will do a great job. Good luck with it! There is also a department of health on line questionnaire at the moment called women’s health let’s talk about it, it’s looking into women’s experience of the health service and if they feel represented.
Ooo going to go onto the link you’ve given and contribute, thanks! Realise now that I have been gaslighted by my gp for the last 10 years, having been told my terrible night sweats are due to anxiety for some years, then when I overcame the anxiety being told that it’s my age.... despite my platelets going above the normal range (unbeknownst to me) at the same time I first raised my night sweats. When my platelets went above 900 they first told me they’d like me to come back for another test in 3 months, did that again when the results were higher again, told me not to worry, had me wait another 3 months to recheck and only then referred me to haematology. That was 2019, and was immediately diagnosed at the beginning of 2020.
Thank you for being an advocate. I think one of the hardest parts about having this diagnosis- is feeling almost ashamed because of your fears and quest to get to the bottom of why you are feeling so bad at times and then you have to seal with medical professionals who make you feel like it’s nothing - and most won’t call it a cancer.
Thank you Jill. Please keep us posted. A few years ago I was questioned by my Gp as to why I had told their IAPT counselor I had blood cancer. I felt embarrassed and ashamed. Ironically, to get to the doctor's that day, I had driven past a poster by Bloodwise (now Blood Cancer UK) listing many different types of blood cancer to raise awareness. PV was on the list. We shouldn't be made to feel like this, Jane
Fabulous!!! Just drafting a complaint to gp about being told my ET ‘is not really a cancer’ , took a break because I am again feeling upset about it and checked emails and saw your post. This is great! Will it be available to show to my gp surgery? As someone who has in the distant past created and delivered training as a part of my work, I have been contemplating doing this with regards to MPNs to deliver to my surgery- they close regularly for training every month, and was thinking of requesting they let me do this as a part of resolving my complaint.
Having become a part of this community just over a year ago, I’ve read your posts, and thus have no doubt you will have represented us very well!!
Thanks for the vote of confidence. I haven’t got the date for the final video but they haven’t done the draft video yet. If it helps, when I am going to a new health professional, I take a copy of the WHO Directive which defines all MPN’s as a cancer (look up your particular MPN) and I took the information from Cancer UK site who have MPN’s on their website. Each time a health care professional utters those words “It’s not really a cancer is it”, I produce those papers and ask them who is wrong?
I don’t like to want to have to do this but what all of us have on this site is a chronic health problem with some very unpleasant symptoms that can be life changing and I hate the flippancy of some health professionals when it comes to our conditions.
Over the last few years my joint pain (especially my spine) has become so intolerable that I have had to buy a power chair just to get out. Because of shielding it didn’t get used much but we kept it charged. That didn’t save the batteries though and I have had to fork out nearly £200 for some new ones.
What I said in my interview was that I wish those who were so flippant would spend a day in my shoes and let’s see how they would handle some of the symptoms associated with this condition.
My haematologist did say during the diagnosis conversation, that he didn’t recognise MPN as a “cancer” in that there wasn’t a tumour to deal with. Should he be (politely) taken to task about this - is there any benefit in calling/not calling it a cancer? (Getting questions together for my first meeting with him on Friday).
I would suggest that as a patient, such views minimise your diagnosis, and ask whether he/she has an MPN and lives with the symptoms and diagnosis, as if not, however much they read about it, you are now instantly more expert on having our cancer.
I always make sure I don’t say ‘my ET’ but say ‘my cancer’ instead. My wee passive aggressive action to keep challenging such ‘beliefs’. If they insist they will continue to not recognise it as a cancer, you could ask to be changed to a haematologist who does recognise it, as this one is ignorant of science and ET being classified as a cancer. The medical field is constantly updated as more research is done, by far more eminent scientists than he/she. We’d still be drilling holes in people’s heads like they did centuries ago if medical professionals decide for themselves whether to go along with scientific evidence or not.
Unfortunately, as I soon learned on this forum, we have to be not only assertive patients, but advocates for our condition. Cancer is classified as cell growth that is out of control. Whilst our condition is tumourless , our bone marrow cell production is out of control which is why it was reclassified as a cancer by the World Health Organisation over a decade ago. Many doctors and haematologists are unaware of this or choose to not accept it. It’s their job to keep up to date with scientific advances, and if this haematologist does not, or is actively ignoring advances, they are not the right person to treat you really, in my view, and it is your right to be treated by someone who does take their field and our condition seriously.
I have complained formally about such ‘comments’ since 6 weeks after my diagnosis, when my gp said the same thing as your haematologist. I asked my doctor why I was given a cancer diagnosis, which I was still processing, if it is not a cancer. I formally complained about this. The surgery fell over themselves apologising, as they have no scientific grounds to say it is not cancer, and saying such things mean they are failing in their duty of care
Hopefully, they will accept their error when you see them. I would personally start with asking if they are the right person to treat you if they don’t recognise your condition, and expect they’ll quickly backtrack when you say this . Professionally they are in the wrong and you can report this if you feel you want to
That’s so well written, and offers expert advice/guidance to ‘megabyte’.
I can certainly relate to some Doctors not recognising ET as a Cancer.
When I was diagnosed with ET I informed my then employer; shortly after the works doctor asked if I had proof of my Cancer diagnosis. I had an idea it was disbelief that ET was a Cancer, and I was proved right. Fortunately, I had a copy of my haematologists letter to my GP which clearly stated, ‘ET is deemed a cancer of the bone marrow.’
In fairness to the Doctor when he was presented with the proof he did say to me ‘I have been educated today.’ He had no idea of the WHO (2008) re-classification of MPNs from the formerly recognised ‘blood disorder’ to ‘neoplasm’. However, it does make you question how this updated information filters down to GPs.
Likewise, like others on here, I’ve found this last year to be a stressful battle in getting my GPs Practice to rightfully acknowledge MPNs (blood cancer) for the purpose of Shielding. This was particularly relevant, as it had protective benefits such as protection in the workplace, and access to group 4 for vaccination. Although I was eventually successful after much advocating, I found the lack of support from the medical profession worrying, even when presented with clarification from Government Guidance, Blood Cancer UK and MPN Voice. I had to nitpick through their inadequate responses highlighting their errors, and for that I was made to feel like a nuisance, and that should never be the case.
I know Jilly will do a great job in highlighting our plight.
Hope you’re beginning to see some improvement in your recovery from surgery too.
Yes absolutely! Does he regard leukaemia as cancer? 'Cos the rest of the world treats it as such! The thing is, that once MPDs were designated as MPNs by the WHO, then research haematologists could apply for financial support for their research. That ment that scientists found that MPNs were caused by acquired genetic mutations in the case of PV this is the JAK2 mutation. Then research pharmacists developed treatments to inhibit the expression of the mutated gene. That's a big step forward for treatment and gives patients a much better quality of life. It's really important to recognise the true nature of things and call them by the right name otherwise we get stuck in the dark ages ..... especially as far as treatment is concerned. As you can tell I feel really strongly about this. So many people get fobbed off by lazy minded doctors who don't know what they're talking about. It's just too easy to tell a patient that it's all in their head.
Having a benefit to calling it a cancer isn’t the point really, it is what it is, a blood cancer. He could say leukaemia isn’t a cancer then as there is no tumour with that. It’s the flippancy again that has got my blood boiling. How would he like to deal with the tiredness, sweats, itching, joint pain and dizziness associated with the illness. If your Haematologist will not treat your condition for what it is I would ask to see someone who takes it seriously. For a haematologist to say your particular MPN is not a form of blood cancer would ring alarm bells big time as he/she is supposed to be the expert on blood conditions.
Hi Jill , firstly a huge Thank You for representing our case and fighting our corner I'm sure you've done us proud with an admirable job. Let's hope it all leads to a better understanding and perhaps increased funding into blood cancer research.
Both you and Megabyte hit a chord with me as a few years after my PMF diagnosis when I was needing a letter from my then Haematologist to support a benefit claim I was taken aback to read along these lines:-
"Of course it isn't cancer in the classical sense just a clonal malignancy of the bone marrow the symptoms of which are being adequately managed with a simple oral chemotherapy".
As you might guess I chose not to submit the letter but rely on my GP assessment which ironically was much nearer the mark as he had a grasp of what Myelofibrosis is.
Naively I continued seeing the guy through ignorance and after he retired I got an even worse replacement and only then sought a second opinion which led to my life saving transplant. Had I not jumped ship I doubt i would be here to tell the tale.
Thank God you found someone who was able to see what was happening and get your treatment. It’s frightening how little some health professionals know and equally frightening that they do not recognise how much our conditions affect our lives. I did say on the video that when I was told “oh yeah, you have cancer but it’s not a tumour or anything”. I came home and used Dr Google which terrified me with the results of my search. I went on to say that I found MPN Voice and never looked back because the people here are amazing and any questions or fears I had were answered by people going through the same illness and treatment so I did raise the flag for the site 🤗. Nothing seems to have changed though Chris, people with an MPN are still having to battle to have their condition recognised and be treated accordingly x
Hi, Chris, your story is similar to mine. I just happened to buy cancer insurance a few months before my ET diagnosis in 2008. I believe that was the year that the WHO declared it a blood cancer. But my hematologist called it a blood disorder. I naively believed him but a few years later I started googling it and found out it was reclassified. I confronted my doctor and he admitted it was cancer. By then it was too late to claim my benefits, because they go by your original diagnosis. And in big block letters, my policy said you could not make a claim based on a blood disorder. So that was that. I certainly am glad you are here to your story. Hope you are doing well.
Hi, that's great news! As with many patients on this forum, my PV was not initially picked up even though my blood results had clearly shown a major problem a few years previously. It is stange that leukaemia is a well acknowledged cancer whereas ET, PV and Myelofibrosis are all but disregarded - even by some haematologist! It should be an easy process to flag up the abnormal results from the blood testing laboratories. Another problem can be arranging an initial blood test - a patient often has to suggest one and hope their GP agrees! My 91 year old father has had a few dizzy spells about which his GP said to take care when bending, Dad asked for a blood test, GP reluctantly agreed and there's a problem with his results! (Probably diabetes but not confirmed yet). Also, I do wonder if these blood cancers are so very rare? Strokes in apparently previously healthy people are a very common cause of death but is there always an investigation into the cause of the stroke? Many thanks for reading and keep safe everyone!ĺ
Excellent! Well done you.As everyone says “ walk a mile in my shoes”.
Unfortunately because Mpn’s are so rare it’s only those consultants who are really well versed in this cancer, understand.
I applied to be a volunteer with our local cancer care operation about two years ago. They too refused to acknowledge mobs as blood cancers despite it being presented by me in black and white. Sadly a lot of ignorance still abounds out there.
The best way for the ins and outs of mpns to be recognised for what they are, would be an hours long tv programme on mainstream television.
I asked my consultant if pv jack 2 mutation was a blood cancer and she said it was because it don’t stop growing . as some people don’t class it as a form of cancer , I know how much my ability to do every day tasks have been lessened , I don’t know if it’s medication or what
I'm sorry to read that so many of you have had negative experiences. I was diagnosed with ET in 2001 before it was classified as cancer, but my GP and my haematology team always took it seriously. When MPNs were reclassified I was glad to be able to get free prescriptions but hated thinking of myself as someone with cancer. I hate the cancer label even more now I have MF but it is what it is sadly.
Outstanding! Do please let us know when the video is available.
FYI - I recently started care with a new orthopedist. When I told him I had PV - we said "What is that. It has been a long time since I was in med school." He listened when I explained what PV is and how it is related to inflammatory issues. I like this doc! I wish more docs were like him.
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Awaiting surgery with PV 
Frustrating Appointment
