First of all thanks for the tremendous response to my first post. I'm so glad I found this community.
When I was diagnosed with ET in July, my consultant stated very clearly (twice) that it was not cancer, but having researched it a bit it seems that WHO, MPN Voice, Cancer Research etc all treat it as a cancer of the blood. So I'm now confused 😖. I have a follow up meeting next week at which I aim to discuss it, but if anyone has any info on why the dichotomy, I would be very grateful.
Whether it's the big C or not, the treatment and prognosis are the same, so I'm not worried about it - just concerned.
Cheers
John
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Yes it is cancer, chronic in nature. Means the doctor you are going to is not up to date on our diseases.....change doctors unless you want to educate them which most don't take well to...
Thanks Rebecca - it could be an interesting discussion with her, especially as she is the senior haematology consultant and is located in the Cancer Wing! You can see why I'm confused.
I was diagnosed 5 years ago and my consultant was brilliant at explaining what this all meant. When she then explained that this was in fact a blood cancer this shocked me totally. Being treated and checked regularly means that 99% if the time there has been no side effects or general disruption to my life. It’s always there in the background but don’t let it take over your life or what you do.
On a very positive note with WHO classifying this as a cancer and on the advice and support of this forum we were able to make a claim on our critical illness policy which in turn has lifted a weight off our shoulders.
Don’t be alarmed that this is a blood cancer, ensure that your consultant is aware of this fact and that treatment is appropriate to the diagnosis.
This forum is fantastic and everyone has a voice and are all willing to help others with advice and / or guidance. There is probably nothing you are feeling which someone on here hasn’t experienced and all are more than willing to offer support
Hi. Perhaps diplomatically (and in the interests of constructive discussion) it might be worth getting hold of some of the excellent MPN Voice leaflets and taking those along to your next consultation. At least you can then begin a ‘I’m slightly confused’ conversation armed with some evidence! Good luck!
Hi John , yes im same my Gp said its a form of cancer! However the heamatoligist told me it ISNT , I would like to see an expert in mpns to be honest but i believe the only one near me is prof harrison in London . so im up in the air like you im also jak2 pos regards Holly
Hi John, another thing that is just the same! In some ways your right, the treatment and prognosis being the same whatever the label is. However because you are new to this, you may find in time that it is less OK.
Many of us suffer the indignities of being told that none of the symptoms we suffer are related to either the mpn or the drugs. Further, the women amongst us, get told it's our hormones / age / we are over thinking It! To name a few. This is very stressful and can play tricks with your mind. When well meaning friends and family ask what does the consultant Say?....
I nearly forgot. The word neoplasm, puts our diseases in the cancer bracket, but because they are chronic not aggressive , it seems it is of no interest to most of the medical profession.
Are you coming to London in November? My husband and myself are. We are desperate for knowledge and understanding.
WHO defines this as a cancer. That also entitles us to free prescriptions if you don't already qualify. I guess some doctors prefer not to use the word cancer as it is so emotive but to categorically deny that an MPN is a cancer does indicate that the doctor is probably not up to date or fully conversant with our conditions.
A visit to an MPN specialist is always a good thing. I flew down from Scotland to see Prof Harrison and I now live in Devon and my present consultant is able to correspond with her about me as I am on her books so to speak.
As you say, the management of our conditions is the same whether they are called a cancer or not. 'A rose by any other name is still a rose' but it does make a difference in terms of claims on insurance and prescriptions etc
It's an emotive thing - and that's what makes it particularly important for us all, as there is, despite all the best efforts, so much confusion surrounding our conditions, and especially the way they perform differently in all of us. It's always a shock to learn you have a debilitating condition that may well sweep you away, and the word - Cancer - itself carries such a payload of dread and worry. I think that is why some consultants soft-pedal on this, and others plunge ahead with very blunt appraisals. Can't be easy on them, but we're struggling out here, aren't we?
I had the same experience. My doctor didn't say Cancer and he didn't say Chemo... but it is Cancer, and it is Chemo. I think they want to keep things positive. When you hear Cancer in your diagnoses you immediately want to as "how long do I have." Well it's nice to know that no matter what it is, and what the drug is, it's not life shortening. Just a bit of a different journey through life here on in.
Chin up! We got this! (I'm only 2 weeks into my journey.)
Im a clinical nutritonist and specialise in Jak conditions. The term cancer stands for an abnormal proliferation of cells, in the case of ET and PV the upregulated Jak2 causes increased proliferation of blood cells. So essentially it is a form of cancer, in fact Jak2 is a gene that regulates inflammation and increased inflammation as a result of upregulated Jak2 expression is seen in many cancers across the board.
Up until 8 or so years ago some MPNs were classified as blood diseases. It changed after that time.
AL Amyloidosis is a blood disease a former husband of mine suffered from. It is a blood disorder but not a cancer. Treatment protocol at the time was the same as that for Multiple Myeloma. Although not a cancer it eventually took his life.
With regards to MPNs I find it sad that occasionally some of our family, colleague's and friends need to hear the word 'cancer' before they believe a condition is serious. People mean well but they can't see it, we are often symptom free for years, and they can't feel our dreadful symptoms.
With MPN diseases it's difficult for people to understand the seriousness of the various diseases. We do have a 'cancer' but we may feel well for so many years. My years of symptom free appear to have come to an end. I am so beyond exhausted I don't want to get up or shower or shop. I have had enough of fluctuating body temperature. One minute I'm soaked and then wham I'm shivering! The exhaustion is so bad I have been trying to teach the hairy responsible dog to vacuum up all himself but he would rather lick me to death so the house is a no go zone. Years ago if anyone had said I would be living in such filth I would never have believed it. I was house proud and a workaholic.
When and if we do become symptomatic and ill it is not often (from my experience) considered due to the MPN. On Hydrea nearly 2 years the lowest platelet I reach is 475, the highest was 1,000. Monthly platelet count is around the 600.
I take 500 hydrea daily and 100 asprin. I am also on high dose pain meds. Now chronic pain condition but initiallystretched ligament t6/7. Suffer nerve pain in lumbar spine but a little concerned about further surgery. Both pain and high platelets count started around the same time 2006/7. I often wonder if there is a link.
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