Et and mean survival

[Irishgal12]

Sorry if I have asked this before i cant remember.

My haem told me near normal life expectancy but I have read 15 year median survival can anyone shed any light on this please am 33

[Tico]

If you are unsure if you have asked a question before,go back to your previous posts. Your Haematologist is right in his answer to you, unless you progress or suffer a thrombotic episode. P.s. You have asked these questions before. Atb,tina.🤗

[Irishgal12 in reply to Tico]

Sorry to bother u

[amarylis]

Hi just to put your mind at rest. I was diagnosed with ET in 1996 when I was also in my 30s. I’m 63 this year and still fit and well. I fully intend to carry on a full and busy life for many years to come. Take care and take heart. All the best.

[Applesnpears]

The figure of 15 years is misleading.

Historically the median age of diagnosis of ET was around 65 years, so adding 15 years would get you to 80, in line with the national average life expectancy. On that basis ET has no effect on life expectancy.

It is probably true that ET is being diagnosed earlier than it was in the past but that means that the historical data on median life expectancy is out of date.

An early diagnosis of ET might even have a beneficial effect on life expectancy as people change their lifestyle after diagnosis ( to stop smoking, better diet etc) to reduce the risk of thrombosis. Regular appointments with your specialist will maintain the efforts to be healthy.

You should be planning to live to an old age.

[Irishgal12 in reply to Applesnpears]

Thank u

[Ramy22 in reply to Applesnpears]

That’s what I sort of just said.... you said it so much better! 😀

[catkinspolymer]

Hi Irishgall12,

I have had ET for over 30 years am now 75 and trying to avoid covid 19

all the best Town crier

[hunter5582]

Note: I was diagnosed with ET in my early 30s. That was over 30 years ago. Despite the ET progressing to PV 7 years ago, still alive and kicking with a good quality of life.

Not sure where you saw the 15 year median ET survival - that sounds more like PV, with median survival of 14.8 years. Here is what you will more typically find.

"The life expectancy of patients with essential thrombocytosis (primary thrombocythemia) is nearly that of the healthy population. Median survival is approximately 20 years. For patients younger than age 60 years, median survival is 33 years." Aug 22, 2019

emedicine.medscape.com/arti...

It is very important to look at the methodology of the longevity study you are reading as well as understanding the meaning of the statistics that are being cited. In calculating the median survival rate in years, age at diagnosis makes a big difference.

"Essential thrombocythemia (ET) is an acquired myeloproliferative disorder (MPD) characterized by a sustained elevation of platelet number with a tendency for thrombosis and hemorrhage. ... The median age at diagnosis is 65 to 70 years, but the disease may occur at any age." Jan 8, 2007

ncbi.nlm.nih.gov/pmc/articl...

As you can see, when you see some of these statistics being cited, the methodology of the calculation makes a big difference. When you average in people diagnosed at age 65 with people diagnosed at age 33, the median life expectancy is going to be lower than what a 33 year old would expect to attain. Not because of the ET. Because of the age of the person. 65 year-olds do not live as long as 33 years-olds on average.

Another factor to analyze is into what risk band a person with ET falls. Low - medium - high. There are a number of factors that determine risk category: age at diagnosis, secondary medical conditions, driver mutation, non-driver mutations, etc. When you lump all risk bands together, the average will be the sum of all risk groups and will not be as accurate as risk-delineated projections.

Another key concept to understand is the difference between a statistical projection and your individual prognosis. They are not the same thing. Statistical projections apply to large numbers of people, not to individuals. There is no way to predict from these studies how far from from either side of the "average" length of life in a statistical projection you will fall(whether you will fall one-two-or three standard deviations from the mean).

As you continue to read these studies, to understand them you have to have a basic understanding of research statistics. Here is a quick and dirty primer.

Mean simple.wikipedia.org/wiki/Mean

Mode simple.wikipedia.org/wiki/M...

Median simple.wikipedia.org/wiki/M...

Standard Deviation simple.wikipedia.org/wiki/S...

Well that was are rather long answer to your question. Looking for the silver lining of social distancing - at least we have more time to read and write. Please try not to worry so much about longevity and focus on living your life to its fullest. Life is a blessing and something for us to fully embrace and enjoy.

Wishing you more time enjoying and less time worrying,

[Irishgal12 in reply to hunter5582]

Thank you Hunter for taking the time

[Pippa63 in reply to hunter5582]

That was interesting I didn’t know any of that. Thankyou. Pippa

[Ramy22]

I was diagnosed with ET in my 20s when most people diagnosed with ET were elderly so they said 15 years because that’s how long the elderly lasted after diagnosis.... a doctor explained this... so now they diagnose sooner people who have it are still living til their 80s and 90s. I’m 57 now and have many years left! Don’t worry... you will be fine and life til a ripe old age.

[Mood2020 in reply to Ramy22]

Thank you so much to all. I think I finally understand the whole life expectancy thing now !I was diagnosed a few months ago aged 35 so I thought I was only going to make it to 50s and my 2 year old daughter would only be a teenager when I’m gone. Hoping for health and a good healthy life expectancy for all!

[Superwoman]

When I was told I had ET my Haematologist told to expect to live a normal life expectancy that was seven years ago now, I live a lot heather life style, not saying that I did not before my diagnosis but keep fit eat well, have never smoked, but enjoy a glass of wine now and then, and drink loads of water a day.

I am now 70 you are young, and have the rest of your life in front of you, so enjoy it as best you can in these troubled times with this nasty Covid Virus.

And never worry about asking the same questions as we are all in the same boat, and row together in that big old sea of life, and sometimes forget that we have asked a certain question, but we are always here for each other.

Jean 🤗

[MaggieSylvie]

It's only the median, and those figures are old ones. My haem told me ten years (I'm 75) which came as a terrible shock to me as I fully expected to make my century, but all the experts say to take no notice of those statistics as they really don't represent the reality. Despite our age difference, you and I are similar and by the time we need anything other than aspirin, research will have produced something better. Keep smiling, Irishgal!

[Irishgal12 in reply to MaggieSylvie]

Thank u x