ET cancer or not?

[Hydrox]

Hi all, I posted a question several weeks ago , ET cancer or not, I received lots of replies and from the advice I received decided to email the geneticist dealing with my family cancer history. I asked her why my MPN ET Jak2+ diagnosis had been left off the list of family cancers. I received a prompt reply saying that she had not intentionally omitted it and would revise her records forthwith. As she did not dismiss ET as a cancer then I now have to conclude that it is. I think clarification is import especially when family and friends ask the question. Thank you all for your very helpful advice.

[Rachelthepotter]

Hi. A form of words that I find helpful to use is to say that I have a chronic blood cancer. If people want to know more, I can explain.

I have myelofibrosis( MF)and it makes me tired , and is life limiting in that sense. It’s probably also life limiting in the sense of shortening my life, even if it doesn’t transform to AML, but the jury is out on that one.

[Applesnpears]

Good to hear that your efforts were successful.

The word "cancer" covers such a wide variety of conditions it is easy to understand why the general public are confused. But medical professionals should be better informed.

[fee13]

Cancer is abnormal proliferation of cells so MPN's fall into this category.

[wotan10]

Words are rather confusing.

I asked my consultant at the very beginning what form of blood disorder we were working with. He said that it was a chronic blood disorder that is infinitely managed with a good out come.

It is only recently that cancer has been used with me.

I was devastated when I first heard this on this forum.

All this means for me is that at the cellular level they go into hyper drive and produce too many.

The way I perceive this is I take the hydroxicarbinide to dampen down this effect It no longer holds the fear factor for me as my levels are in the normal range presently after three years of medication.

Hope this is useful.

[ourlife]

Hi Hydrox,

I believe the N in MPN stands for Neoplasm, which means uncontrolled cell growth, which is where the clarification of our condition being a cancer comes from.

I am also under the impression that the world Health Organisation re classified MPD to MPN in 2006 to officially recognise ET,PV,MF as blood cancer. It was this evidence that helped me to make a successful claim on my critical illnesses cover.

Maybe MAZ can clarify if my beliefs are correct.

Good luck and have fun,

Ourlife

[Hidden in reply to ourlife]

Many people have had success claiming on their critical illness cover on the grounds that MPNs are a form of cancer. Equally, people in the U.K. who are on aspirin or any other medication for their MPN are eligible for a Medical Exemption Certificate on the grounds of cancer treatment. Once held, all prescriptions for any health problem will be free.