I am 54M, recently diagnosed with ET in Ontario, Canada. High platelets (900), negative mutations. I do not have any visible symptoms. I do not have any pain. Maybe very occasional short term aches in certain parts of the body. I am told I am low risk, on low dose aspirin and blood panel every six months. Oh, my spleen enlarged a bit.
So I considered myself lucky, but at the initial stage I was in shock. "I do have some sort of a cancer? what do I do?" So kept this info only to a small circle, only wife and few friends. My children (18 & 19) do not know. Now I feel a bit more relieved and at the acceptance level of my grief cycle.
I am debating internally if I should share this info with more people. But I do not want any more dramatic explanation. Or want to go through all the hassle.
How did you do it? Any tips?
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AnonymousMike
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Everyone and every family is different and the shock of the initial diagnosis is awful. I can only say what I feel personally. First I would tell your children as soon as possible as if some friends know it is therefore no longer a secret and they might be very upset if a third person let it it out by mistake plus be very frightened especially by the word cancer. However emphasise to them that although ET is a rare cancer it is a chronic one with excellent treatments if you need them, that much research is going on into new ones and that many people can have a normal lifespan with it.
My children were tiny when I was diagnosed and it also wasn't designated as a cancer then. They grew up knowing that mum had 'dodgy' blood, took some pills (aspirin and HU then) and had hospital appointments periodically. If they queried it I likened it to one of their cousins who has type 1 diabetes and has to use insulin but pointing out I had the easier treatment.
We only told my parents and two friends and then really only because they helped with childcare for hospital appointments. After we'd got over the initial shock (and a very gloomy consultant left to be replaced by one who was much more positive) my husband and I took the view then, and wouldn't have done it differently now, that I looked well, was coping with treatment which was likely to be lifelong and really I didn't want to be labelled as ill. When for various reasons 30 odd years later we did have to share information the usual reaction was that I hadn't looked ill. I noticed I usually lost them when explaining the nature of the disease. This wasn't from unkindness but unless they know someone else with a rare blood cancer they associate blood cancers only with leukaemia. I can quite understand this.
It is though good to have a close friend, in addition to your wife, who knows perhaps to be able to discuss it with or just to offload onto occasionally (have a rant). However don't be surprised or upset if they forget you have it. Chronic cancers are rather lonely illnesses and this is understandable especially if you don't have any obvious symptoms nor needing dramatic treatment. You can always come on here for support.
It would be interesting to know how other people have handled it.
I must say that I found your post both wise and uplifting,especially your comment that, " chronic cancers are lonely illnesses. " Clearly you are both empathetic and compassionate.Thank you lifting me up,even though I did not write the original post.
How we deal with it is just as varied as how our disease affects us. I've always been quite open with most things. I've disclosed my MPN condition to near all my friends/family and even to some business associates, partly to explain my varying productivity. The only trouble was one guy who told my husband "why doesn't he just cut it out?" I didn't care but my husband won't talk to him any more.
But it seems you are very private, so your condition is no body's business. Esp if you're symptom free there's no need to bring it up. If/when you're comfortable disclosing it will be the time to do so.
I have less option to hide it even if I were private as I can have a heavy symptom burden.
On your question of do we have Cancer, the answer is a convenient yes. Convenient because this word has opened money and academic interest in MPN. Since this change from a "disorder" ~2008 a whole pie chart of research is happening, see this post and image:
As for a short phrase explanation, I usually have some version of "it's a bone marrow malfunction that makes trouble with blood counts". Sometimes that is followed by the question "how do they cure it", to which I honestly say "they don't" If there's more interest I go into current progress, treatments etc.
You're right that if we have symptoms, especially fatigue/ susceptibility to infection and/or treatment is being tricky we owe it to ourselves and family to be more open. I was disappointed when I had to do this and grateful for the very long period I didn't need to. Those working will possibly have no option if they need help to cope. Needless to say Covid has meant many of us on treatment have had to shield and then there has been no option but to disclose it to protect ourselves and get more support. Actually, oddly, it may have had some future benefits that it just might remind people with other bugs to avoid us in future for which I certainly would be very grateful!
I like your short explanation - to the point. Mine is very similar. It also greatly depends on who I am talking to as to the amount of information I either want to or need to disclose. I tend to avoid using the word cancer unless it is really necessary. Human nature being what it is I've found either it evokes distress from the other person or stories about other cancers with bad outcomes - no-one means to upset us I think that is just how it takes people and certainly this has definitely taught me to be much more careful when told about other people's difficult health issues. There will unfortunately always be someone who says the wrong thing for whatever reason.
I was in my early 70's when diagnosed- was asymptomatic-levels at beginning 774 now 250!In my case was just getting over Bowel Cancer and I thought "oh no" not another cancer!
I don't have any family just my husband and a few cousins- but have told all of them -
I am sure you will be okay with treatment-I did tell my few relatives because I was so shocked!
I think who you choose to tell is a very personal thing. I chose to tell people on a need to know basis. So my close friends and family know about it, some work colleagues too (I work in the medical industry so it was easier to explain it). I call it my “funky blood” but when I explained it to them I described it as cancer with a little c and I explained how I will likely die with it, not of it. Personally, I would tell your children, it’s better they hear it from you and you can explain it properly, than they overhear it and worry. Also, they may wish to get some testing as a result of your diagnosis. I hope this helps you on your journey.
A very interesting and individual question. Besides my wife, my two best friends (who don't live close by) and the wife of a very close friend (who is going through a much more serious cancer and we started talking about hospital staff) - I have not told anyone...principally bc I don't want our kids to worry..my wife fought stage 3 breast cancer 7 years ago so if the kids hear the word cancer it sends them down a difficult rabbit hole...as I have been lucky and not had symptoms which really impact my daily life too much - I have kept it fairly private...if that were to change, I would feel OK letting more people know...
We are all different in how we manage information about having a MPN. This reflects our own needs and preferences as well as the needs of our family. There is no need to share any more widely than you wish to share. One the other hand, it is a chance to educate people about this rare form of cancer. In the proper context, sharing about ET and the other MPNs can spread awareness.
I would suggest that sharing with your adult children is a good idea. I expect they would want to know about anything that could have significant impact in your life. in addition, there is the issue of Familial MPNs. It is known that MPNs can run in families, though it is not a directly inherited disease. In my own case, I have a JAK2+ PV. It was ET, but progressed into PV. My daughter has a JAK2+ ET. She was diagnosed in her 30s like I was. My son has an idiopathic erythrocytosis. This was also detected when he was in his 30s. We do share information as we are a close family and support each other.
If you do decide to share information with your children or anyone else, suggest a frank and direct approach. The way I explain it that it is a type of blood cancer, but it is a cancer with a little "c" not cancer with a big "C". ET is a chronic condition that can be successfully managed like diabetes. Know that your kids in particular will most likely immediately Google ET and may not get an accurate picture of the condition. Suggest directing them to reliable sites like MPN Voice. Perhaps even print a few things out for them.
The bottom line is that someone with ET is more likely to die with it than from it. There can be issues to manage and some of the symptoms can be more subtle and not obviously related. Issues like fatigue, pruritis, and the systemic inflammation that we often experience are quite real and at times quite bothersome. Your family/support system simply needs tp understand what you are dealing with. It sounds like you are fortunate to have a relatively indolent case of ET at this point. Hopefully it will continue to present in this way.
I tell people I make too many red blood cells and generally leave it at that. This may trivialise it, but I guess it's my coping mechanism. If they ask further questions then I go into more detail, depending on the questions.
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