Age 30. Hematologist told me today I likely have ET due to mildly elevated platelets for 10 years. Shocking with a young daughter and pregnant wife at home.
Last bloodwork indicates I’ve likely had this for 10 years with high platelets on a CBC in 2011 being missed or ignored by my GP.
Trying to get a sense of what life expectancy is for someone in my position. Everything I read says young patients have median life expectancy of about 30 years from time of diagnosis. But are most young patients diagnosed late like me due to not seeing a doctor regularly when young? Wondering if I’m already 10 years into that 30 year range or if my diagnosis time is more accurate.
Trying to wrap my head around all this.
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cmc_ufl
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1) Dr. Google is a bit of a quack - you'll get better experience on this forum.
2) The fact that you had high platelets 10 years ago means nothing - might have been because you had an infection at the time. And if you have no history of counts between then and now you can't possibly know how long you have had ET.
3) Any median survival estimation can only be based on time of diagnosis. So you have to take that as 30 years from now.
4) If you were to assume you've got at least as long to live as you've lived already, advances in understanding of our conditions are almost certain to keep us going well into our dotage. I was diagnosed with PV 7 years ago and am probably a lot healthier now than I was then.
Scary when you get the diagnosis, as we all know, but stay positive and I'm sure others here will help with their knowledge.
Thanks, friendofpiglet. I appreciate your perspective and kind words.
My platelet history is as follows:
2008 (age 17) - 380
2011 (age 20) - 464
2021 (age 30) - 434, 495
I am not sure what this means for my case, but it looks like I even had high-normal platelets in late childhood. Don't have any more information on the counts than this.
I pray I have enough years left to see my children grow. Trying to stay positive.
This is good for me to read! Was getting worried that my platelets have been 900- 1000 for the reason past year or so. Good to hear you can be stable at that level for such a long time!!
cmc_ufl I know how scary it is to hear the diagnosis BUT ignore what you are reading on the internet. My hematologist told me that most with ET have a normal life expectancy, well into their 80s! He said that I am more likely to die with ET than because of ET. First step is to find a good hematologist who specializes in MPNs and they will provide you with accurate information, proper diagnosis and quality care. So much to look forward to and so many years ahead!💛 We are here for you. Do you need help finding an MPN specialist in your area? How high are your platelets? Have you had blood work to check for mutations?
Thanks smith124. Very frightening to get this news. My thoughts continually turn to the welfare of my wife and children if something were to happen to me.
I have found an MPN specialist in my area and will be working with him from this point.
I am still awaiting the specific genetic results for my ET, but all other causes have been ruled out and all other blood counts are in the normal range.
It is a bit of a shock to be told that you have an incurable cancer. It took me some time to wrap my head around it, and this site has been really helpful in coming to grips having ET.
An average is not a deadline, and people who have heart disease or liver disease, or diabetes and also have ET are included in calculating the average. Based on what I have read here, a late diagnosis is not unusual, from what I've read, it is more likely to be caught due to a blood test than any symptom. So the thirty year average also includes the people who were diagnosed late. If your diagnosis was due to a blood test, and not because you went in with a complaint related to ET, I would say that you shouldn't worry about it too much.
You are not helpless. Diet, exercise, good mental health are as helpful to people with ET as anyone else to lessen the risks of heart attack or stroke, especially if your platelet levels are controlled.
And as friendofpiglet says, who knows where the state of medicine will be down the road.
Thanks, nightshadow. Yes, mine were caught as an incidental finding on a CBC for a physical, my first physical in 10 years.
My platelet history
2008 (age 17) - 380
2011 (age 20) - 464
2021 (age 30) - 434, 495
My GP in 2008 didn't say anything because it was high-normal (not sure if this could have been ET at this point). But a good jump between 2008 and 2011, which was also ignored by my GP since it was only slightly above her threshold for being high (150-450).
I am making big changes to my health starting now as I have been quite overweight for most of my life. Nothing like a cancer diagnosis to motivate you to get healthy!
Looks like they caught it while your platelets are still relatively low, (mine were in the high 600's when they finally took a blood test to see why) so I would think that your personal outcome would be pretty good. Glad you will be taking proactive steps in the rest of your health care!
Hi I was diagnosed nearly 20 years ago at the age of 22 so I totally understand your shock and worry about your diagnosis but can definitely say as long as treatment helps and controlled you will at least last 20 years and imagine a lot longer!!! Has your consultant gone through treatment options and long term plan for you? I was given the ten years estimate of survival when first diagnosed but then at that time said we don’t often see younger patients with this so all very unknown, I was also told that I wouldn’t be able to have children because of treatment options at the time and now have 2 beautiful 7 and 5 years olds so you can see how much can change medically within that short space of time. Happy to answer any questions about symptoms, lifestyle, treatment - I still have a full time job and busy family and it can sometimes ge exhausting but it’s defo manageable and has not effected my quality of life on the whole. Take care and definitely use this group for any questions you have! Everyone is amazing on here! 😊
So lovely to hear BeckyDing, it is just that at the time of diagnosis it does throw you doesn't it. I had no symptoms but undiagnosable rash on lower legs? This site is so helpful isn't it and so glad to hear you have been able to have children, life does go on doesn't it. Take care all.
Yes absolutely! I think when I was diagnosed it wasn’t really explained to me very well and was given tablets that just got told would help decrease risk of progression and stroke/blood clots and I then discovered was actual chemotherapy about 2-3 years later! It really was a different time and feel the majority of consultants and specialists know so much more and so much more support and communities like this now which is just priceless! I think I went through the shock of it all when I was getting to my 30s and actually realised what was really happening to my body - I also had moved hospitals and the information and support was just at a different level. This community is amazing and wish I had this when I was diagnosed as it felt so lonely at the time. Are you on medication? I had migraines and then a nose bleed which lasted over 24 hours and nose had to be cauterised - they still didn’t do any blood tests and wasn’t until my go finally did some about a month later they found my platelets were 1200! He had never seen that count in anyone under 70 before x
Hi, yes I take 1500 Hydroxy and also Clopidogrel blood thinners daily and luckily I feel normal (? perhaps only I can verify that, ha ha). It is a shock and certainly this site makes us feel we aren't alone. Take care. xx
It can be really difficult getting your head around a new diagnosis. There’s plenty of good support and support groups available. Here in the UK we have MPN Voice. I have found utilising this to be a great help. At the regular forums there’s the opportunity to hear from experts and meet others in the same boat....
Due to COVID the forums have been virtual and there have been more of them. If you can’t attend they are often recorded and available to watch later. MPN Voice are also good at keeping patients informed, through their newsletter, of other events people may be interested in.
If you’re interested there is also buddy support available. More details on the mpn voice website.
Hi,I was diagnosed with ET 5 years ago - I am 57. Once you get over the shock it's finding the best solution for you. I am on Peg Interferon which has been great. In my head I think I'm going to get old and have a good life. You have to think positively about life and try to forget your diagnosis. Focus on understanding your med options and coming to a decision that you are happy with. You are young and have your whole life ahead of you with your family. Don't let this get in the way of your life. Remain positive and look after yourself and you'll get through this.
Thanks Jocko. I appreciate your kind words. My biggest fear is the welfare of my young family and what they would do if something happened to me. I am trying to stay positive and think of the better outcomes than the worst outcomes. When my mind wanders, it goes to the bad outcomes (transformation, etc). Trying to stay calm and take care of myself.
I am 49 and have had it for a long time. From what I know life expectancy is normal and with good care from specialist haematologists you will be fine. One thing I would say is ask for a treatment plan. In one hospital I went to I would see a different person each time and they would come up with a different approach, which was disconcerting. In the end I transferred to Guys and it was the best thing I ever did. I get a bit tired sometimes but I have a full on busy job and home life too
Thanks Jenny_F. I am getting set up to see an MPN specialist in my area. He says he can develop an individual treatment plan based on my specific results once we have more information (my genetic testing isn't concluded yet). I hope to stay with him long-term.
Don’t panic - it is a shock when you’re first diagnosed and I went through similar scares when I found out by chance 17 years ago, in my 40s, that I had ET. No idea how long I’d had it before that..!
Life expectancy stats were even more scary then, often shown as 10 to 15 years but these and your newer figure of 30 years reflect the fact that ET is still not normally diagnosed till later in life and that many people will die in their 80s for reasons totally unrelated to ET.
The expert advice is that most ET patients will have a similar life span to the general population so long as their condition is properly managed to avoid the risk of complications such as stroke and thrombosis and very few progress to any more serious conditions.
I have led a completely normal and very busy life since diagnosis, working long hours, travelling worldwide etc and have had no symptoms from my ET.
I was on aspirin only for many years and only started on further treatment when rising platelets and approaching 60 made that advisable. I’m now on Pegasys, which is easy to use, very effective and gives me no significant side effects.
MPN Voice is a great source of reliable information from experts and they can even arrange a buddy if you want to talk to someone who has already been through a similar experience of diagnosis and understanding the consequences of having ET.
Thanks, Andy. Your perspective is comforting. In your case, did you have any bloodwork prior to your diagnosis that indicated high platelets? I am trying to figure out if most people generally have a lag between onset of ET and actually getting it diagnosed. In my case, it is very possible I had it for 10 years prior to getting diagnosed.
I wasn’t aware of anything previous, as being fairly young and generally fit I’d very rarely seen a doctor, let alone had any blood work done..!
It’s likely I’d had ET for a while but I don’t know how long and it was only picked up when I had bloods done as part of a routine work medical checkup as I had no symptoms. luckily the haematologist who did my blood work was an MPN specialist so suggested follow up to see if my platelets normalised or remained high.
Life expectancy is very uncertain thing and depends on many factors, and your ET is only one of many So, in my opinion, better not focus on it but make everything you can to improve your daily life with anti-inflammatory diet, sports, supplements, good mood, etc.! It's a good sign you had almost no symptoms. Also, consider PEGylated interferon, it can slowdown the ET and give you some amount of reassurance.
Thanks Alexbits. Can you give some more information on anti-inflammatory diet? Is this something a lot of people with ET focus on? Are there any specific supplements you recommend? Is pegylated interferon typically recommended for low-risk ET to slow progression?
Please, please stop looking up your condition on the internet because 90% of what you are reading is a load of scaremongering rubbish.
I was diagnosed with PV in 2015 but I know I must have had it for 30 years after multiple miscarriages and 3 DVTs. It was only post operative testing that raised alarm bells
I was told to expect a normal life span. I have noticed over the last couple of years that old age seems to be catching up with me although I am only 59. My body feels much older but I am fighting it. Having to shield for so long isn’t helping but keeping my mind busy is crucial.
Anyway, like I say, keep away from Dr Google and just ask your questions to those of us who are living, not dying, with the condition. You can also check cancer research for info as well.
I hope your mind has been eased by talking to the lovely people on here, they have become my MPN family and they have got me through so much. Take care
I greatly appreciate your perspective. I am doing my best to keep off Google. When I first started hearing "ET" thrown around, I looked up everything I could and scared myself to death with the survival statistics. For someone like me diagnosed so young, this is a major concern I have.
The support I have gotten on this forum over the last couple days has been incredible. I plan to be active here long-term!
It’s good that you have found so much support on this site, not that I had any concerns that you wouldn’t because the people on this forum are amazing. You need to get life expectancy out of your brain and start concentrating on living. You could be hit by a bus tomorrow lol. Honestly, you will live a long life with the excellent treatment you wool receive and the regular check ups so go and have as much fun as you can with your kids in lockdown x
Being first diagnosed is a shock - I was 39 and remember it well. But ET is not a killer. All kinds of obscure research is done and these estimations of prognosis are meaningless. You are likely to live to a ripe old age. Please ignore Google, the best information available for us is MPN Voice and your own medical team.
Welcome to the forum. I am glad you found your ways here where you can get support from people who understand as well as an accurate picture of what living with ET is like. Emphasis is on living with ET.
I was diagnosed with ET about 30 years ago. The Et progressed to PV about 7 years ago. Now at age 65, I am still alive and kicking. I have had a rich life and continue to do so. There can be some challenges to managing a MPN, but those challenges can be met. You are going to have plenty of time to learn about MPNs and how to manage your presentation of ET.
Be careful about how you read the statistics regarding MPNs, especially longevity statistics. There is a big difference between statistical probability projections for large numbers of people and your individual prognosis. Do not apply the "30 year" figure to yourself as a prognosis. That is not what it means. Most people with ET will live a normal to near-normal life span. As others have stated, expect to die with ET rather than from it.
This is not to say that there cannot be challenges along the way. Many of us, myself included, find that the secondary symptoms can be more of a problem than the thrombocytosis itself. At the core. MPNs are inflammatory disorders. The deregulation of the JAK-STAT pathway does more than drive up hematopoiesis (the production of blood cells). The overproduction of inflammatory cytokines is thought to be responsible for many of the secondary symptoms we experience.
The good news is that there interventions to help deal with both the primary and secondary symptoms people with MPNs experience. We are each unique in how our MPN presents and we each need an individualized treatment plan. Due to their rarity, many hematologists do not have the KSAs to provide optimal care. That is why it is so important to consult with a MPN Specialist. Here is a list of docs with that expertise mpnforum.com/list-hem./ .
Please know that you have plenty of time to learn about ET and how to treat it. In the absence of symptoms like thrombosis/hemorrhage (ET is at risk for both) the standard protocol would be low dose aspirin + monitor. If you are having issues with systemic inflammation, there are interventions for those symptoms too.
Below are some reliable resources to get you started on learning more about ET and MPNs.
I hope this helps you get started on your MPN journey. Know that this will be a long journey with some hills to climb, but a journey you can handle with success.
Thank you for your replies to my posts. You are such an inspiration to me! I will study all this material you sent. I plan to be active on this forum long-term!
I enjoyed watching Dr Spivak’s presentation and explanation that most ET patients never get homozygocity for JAK2, which presumably means that their disease stays the same. Is that your understanding? He says that the allele burden for ET patients is rarely greater than 50%, which presumably correlates to low progression rates?
That is essentially correct. There appears to be two dimensions to how the JAK2v617f mutation manifests.
People with ET tend to have the lowest MAB, people with MF the highest, and PV somewhere in the middle. MAB<50% tends to correlate with lower symptom burden. Emphasis is on the word TEND. There is not a definitive linear relationship. The Mutant Allele Burden does tend to progress with time since the JAK2 mutated hemopoietic stem cells seem to have a competitive advantage over wild-type HSCs. That is why the allele burden tends to increase over time. Progression of MAB occurs at different rates for different people and at different points in time.
There is some evidence that it matters whether the JAK2 mutation is heterozygous (one side of the gene pair) or homozygous (both sides of the gene pair). The heterozygous mutation is more likely to be found with ET. Homozygous mutations are more likely to be found with PV. Again this is a tendency. Even when homozygous JAK2 mutated HSCs are present, the mutated HSCs are not necessarily all homozygous. Some may still be heterozygous. It is thought that it may be what happens is that during cell replication the defective JAK2 gene found on one side of the gene pair gets passed to the other side, creating a homozygous gene pair.
Learning more about the underlying genetics involved in MPNs is critically important. We will all learn more and benefit from the ongoing research.
Many thanks! Well, I was diagnosed last Dec, aged 52, with ET, so just hope I can remain stable and make it to 80 without too many (or any major) complications. Drugs other than, say, HU would be nice. Hopefully Ropeg will be approved in 2023 and afford a better, molecular response, because my fatigue on HU is worse than anything I experienced prior to treatment.
At age 52 I am a bit surprised that the doc opted for HU since you are age<60. Many docs would start with Pegasys if cytoreduction was indicated for someone younger than age 60/65. Did you have symptoms that required cytoreduction? Most docs would opt for aspirin-only for someone age 52. Sorry to hear that you are experiencing adverse effects from the HU. Unfortunately asthenia and dyspnea are common with this med.
If you are in the USA, Besremi (ropegylated interferon) should be approved to treat PV in 2021. Perhaps in just a few months. I believe it is in clinical trials for ET if you are interested.
Don't know if you have seen these two articles, so I will repost them. Both are very good. (Claire Harrison, Jerry Spivak).
I had a mild MI - possibly due to the ET. Otherwise I was virtually asymptomatic. I’ll ask if I can switch to PEGinterferon on grounds of intolerance to HU, but it may be too expensive for the NHS here in the UK. Thanks for the articles, although those ‘progression’ and ‘transformation’ statistics are much higher - and more worrisome - that I expected, given the ‘normal’ or ‘near-normal’ life-expectancy espoused elsewhere.
Many people in the UK do use PEGylated Interferon. Noting Dr. Harrison's protocol, some docs routinely offer a choice between Pegasys or hydroxycarbamide for treatment. Many, nut not all, are unable to tolerate Hydroxy or prefer the risk/benefit profile of PEG-IFN. Ultimately, it should be up to you to decide which is in your best interests.
Suggest not sweating the progression stats too much. Certainly be aware of them, but remember that these statistics apply large group of people not to individuals. The stats are not your individual prognosis. If you wanted to look at issues related to your individual prognosis, you would look to your MPN-driver type, the mutant allele burden, the presence of non-driver mutations, and co-occurring medical conditions.
One thing you can do to reduce risk has to do with lifestyle choices. Diet and exercise can affect your cancer risk, possibly including risk of MPN progression. Reducing inflammation is one clear example of something that improves quality of life and may well help to delay/prevent progression. It is particularly important for us to avoid known carcinogens and other agents cause genetic damage. There are things we can do to improve our chances to live a normal lifespan. More importantly, there are things we can do to live a higher quality life no matter how long we live.
I read the article you posted and noted the choice she offers patients; I was not given a choice, but was told instead that, unless I begin treatment, ‘the next episode would be disabling.’ I have, therefore, just spoken to Dr Harrison’s PA and will ask my GP to refer me. My current hospital have just cancelled my scheduled appointment and pushed it back another month - not acceptable. Moreover, they didn’t even perform a BMB at diagnosis, and note that Dr H almost always does in order to gain a baseline. Thanks for reassurance re. progression. Given my normal red and white cell counts at diagnosis, mildly elevated platelets (600), CRP of <1, and absence of splenomegaly or other constitutional symptoms, I suppose I SHOULD relax a bit more about my prognosis. I’ve also become vegan, exercise every day, don’t drink or smoke, and keep an eye on my blood pressure and cholesterol levels. As I’ve said before, if I can make it to 80, I’d be happy! Keep well and in touch here!
Assertive patients receive higher quality care. Passive patients do not, It sounds like you are managing your care properly in that you have identified unacceptable care and are willing to take action. Sometimes providers can and should be replaced.
It sounds like you are already proactively to do things to manage your MPN and other health issues. You could also consider some of the anti-inflammatory dietary choices and supplements (e.g. curcumin) if you have a mind to. You are already well down the road of an anti-inflammatory diet if you are following a vegan diet. If you can find one where you live, consultation with an Integrative or Functional medicine doctor can be very helpful in this regard. ifm.org/find-a-practitioner/
I think seeing Dr. Harrison or one of the other MPN Specialists is an outstanding idea. Please do let us know how things turn out.
Curcumin has worked better for me for osteoarthritis/inflammation than any NSAID or other agent I ever took. You do have to use a bioavailable formulation or it does not work. A note of caution - curcumin is blood thinning to some degree. It does tend to potentiate the aspirin a bit. Not as much as some other agents (e.g. fish oil), but do be aware.
Not much to add except that we’ve all been through that frantic period of Googling and have emerged with less and less anxiety as time passes, and, perhaps, that the diagnosis can be a blessing in disguise if one chooses to see it in a certain light: most people take their health for granted. With ET, if you take control of the modifiable risk factors for the thing everyone should take care of - our cardiovascular system - you are more likely to outlive the so-called ‘healthy’ non-MPN people out there who drink, smoke, eat poorly and don’t exercise!
You did, thank you! I have my good days and my bad days - mostly with fatigue and the time between ‘phone appointments. Now it seems that my consultant is ‘moving on,’ so I’ll have to see someone else, though at least it’ll be a face-to-face appointment. I do so hope Ropeg is approved and that the possibility of ‘progression’ being halted is on the cards over the coming years.
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So, in my opinion, better not focus on it but make everything you can to improve your daily life with anti-inflammatory diet, sports, supplements, good mood, etc.! It's a good sign you had almost no symptoms. Also, consider PEGylated interferon, it can slowdown the ET and give you some amount of reassurance.
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