Telling family

[Carlalawoo]

Hi. I've just been diagnosed with MPN (ET). I need to tell my family and not sure how.Was hoping someone might be able to give me some tips please.

Thank you

[hunter5582]

My suggestion would be to first be sure you have your head wrapped around the diagnosis and what it means. ET is a type of blood cancer, but it is a chronic condition, not an acute condition. It is cancer with a little "c", not cancer with a big "C." Properly managed, you are more likely to die with ET than from it. Most people with ET can expect to live a normal lifespan. There can be symptoms that need to be managed. These symptoms can impact quality of life. Understanding what these secondary symptoms are is an important topic, particularly how they may affect you.

Family members will often consult Dr. Google about ET when they hear a family.member has it. The information can be alarming if it is not read in the right context.

Understanding and support from family is very important when managing a chronic condition. Wishing you success as you move forward.

[Carlalawoo in reply to hunter5582]

Thank you. That's very helpful

[Ebot]

Hi there.

Totally agree with Hunter. Get your head around the diagnosis first. And play down the cancer element which tends to alarm people - all bald heads and death etc.

This is most definitely cancer with a small ‘c’. It’s a chronic disease which people live with for years and as Hunter says, you’re most likely to die with, not, of

When I was first diagnosed ET / PV was still called an MPD - myeloproliferative disease. I’m really thankful for that. My head was in a mess as it was. I know for sure that if I had been told I had a type of ‘cancer’ I would have been completely floored. So terms have their impact even if the nature of the disease doesn’t actually change

Depending on how you are feeling you might want to make it clear what kind of support you’d appreciate / need now - or in the future. MPN Voice produce some very useful leaflets so perhaps worth having those to hand for your family to go away and digest in their own time. There’s a lot of alarmist (and simply out of date) information floating around on Dr Google so direct them to reliable sources like MPN Voice. Wishing you all the best

[shiftzz]

In my case, complex my sister died of adenoid cystic carcinoma , my mother didn't cope well, they were in their 80's when I got diagnosed. I struggled with the C word, but as Hunter said, most likely you will have a normal lifespan. I decided not to tell my parents, my dad passed away 3 years ago aged 92, the day after his funeral mum got sectioned and is now in a carehome, late stage dementia. Neither knew of my PV, neither had to burden of my PV. A decision I made, it was right for me. I wish you well..

[Faith33]

I agree with the above replies. I didnt tell anyone for many weeks. I had to come to terms with the C word myself. Even 7 years kater a sometimes tell peopke i have a rare blood disorder (rather than say the C word). Be kind to yourself xx

.

[MaggieSylvie in reply to Faith33]

I think that's what it is - a disorder.👍

[mark382]

I do t have ET but PV, but also an MPN. I was fortunate that when i was diagnosed it was still called a Disorder and not a Neoplasm. I was told I made too many red blood cells, so that's what I told everybody. Guess it made me more relaxed about. I only read here other reliable sites that it was a type of blood cancer. Maybe I belittled the problem, but it helped me cope. I'm more likley to die with it rather than from it, especially as I'm monitored every 3 months.

[Ipadlin]

I too have been recently diagnosed with ET and as others have said waited until I came to terms with the idea before talking to family. My consultant was really good when he told me - he began with two sentences that i used with our daughter. "We've identified your condition, it is treatable" "It isn't life limiting". Only then did he go on to say that it was cancer, "but not as you think of it" and later said "we'll be using chemo, but not as you think of it" to treat you.

Our daughter lives miles away so this was done on a video call I then sent her a link to one of the booklets I'd been given so that she could read the facts in her own time. We'll talk again once she has absorbed the information.

[Mazcd Partner MPNVoice]

hello Carlalawoo, it can be difficult to explain what ET is to your family and friends, we have some very good information on our website about ET and the different medications used to treat it, and also lots of information on side effects, it might help you and your family to read as much as they can on the website so that you and they have a better understanding of what ET is, and then you can talk to them about it, there are some helpful tips on this page mpnvoice.org.uk/living-with...

best wishes, Maz

[Lola367]

Hi Carlalawoo, I was diagnosed with ET 2 years ago aged 45 and thought long and hard about how to tell my family - my kids were 12 and 14 at the time and I didn't want to scare them nor my elderly parents so I waited until I had calmed down and found out more about the disease so I could explain it in a way that was right for them. There are some fantastic resources online including the MPN Voice links already mentioned, there is also a new ET booklet from Blood Cancer UK which is great and Macmillan has some great booklets too about how to talk to family:

bloodcancer.org.uk/understa...

macmillan.org.uk/cancer-inf...

Best of luck and am sure you will find a way that works for you, it can be a tricky time when you are first diagnosed, lots of emotions but you have found a great place to get support.

[Odysseus21]

I don’t understand your problem. Are you ashamed of your diagnosis?

You have been hit with a rare genetic mutation that cannot be cured but , luckily, can be controlled. You need the support of your family and friends to continue having a normal life. How can keeping it secret benefit anyone?

Apparently there are only 60,000 people in the UK suffering with us. At those odds you should buy a lottery ticket!

We will have symptoms from the MPN and also from side effects from the medications. They will not be visible symptoms. Some friendly sympathy goes a long way to help ignoring them. A problem shared is a problem halved. Be kind to yourself.

When I was diagnosed with PV I was very tempted to make myself some tee shirts with JAK2 V617F logos. I chickened out of being that brazen, but I told everyone and anyone who wanted to listen!

You do not need to be facing this alone. Tell your family that you won the lottery but got the booby prize.

[Carlalawoo in reply to Odysseus21]

I'm not ashamed at all. Just a little up and down with my feelings. Obviously the cancer word is scary. I understand its the little c, so then almost fob it off as not to worry, not important. I then get emotional and think I'm playing it down too much and it is a bigger thing then I'm admitting. I then feel guilty that I'm feeling that way as it'd not a big thing and it could definitely be worse.

I've told a couple of close friends and had very different reactions. So was looking for advice on how other people had put it across.

I have no intention of keeping it a secret, although I have played it down to my Mum, as I know she really will take the cancer word to heart and over worry. I've told her I have a blood disorder and that I'm taking aspirin.

I'm very grateful I have found this group and have joined a couple of groups on Facebook.

Thank you for your time in replying to my question. Its very much appreciated ☺️

[Yarnhabit in reply to Carlalawoo]

Hi,

I was diagnosed last year with ET, I usually tell people ( when I have to - I am quite a private person) that I have an issue with my blood but did explain to family what it was. I told my husband straight away when I was still a bit all over the place ( very carefully using like others some of the language my consultant did with me) but only told my daughter when I had processed it all. I understood the big C little c thing right away, so many of my family have had the former and all but one have died so I am quite grounded. I understand the whole chronic progressive thing but I am struggling with some of the symptoms day to day and don’t know if I am just being a wimp or my issues with lack of iron/ stress/ menopause are making me feel dreadful some days. I have taken a step back at work and have continued with looking after myself - eating well and exercising as I always have. I rest and make sure that I am kind to myself.

I think you need to find your own way and do what is right for you and your family and friends but this forum has really helped me a great deal.

TKe your time and do what is right for you.

All the best

[ainslie in reply to Carlalawoo]

Take your time, wait until you feel ready, there’s no rush

[Mrs_Average in reply to Carlalawoo]

Hi. It is a struggle. I have still remained fairly private about my condition and so only family and very close friends know. Due to symptom load changing ( I have MF) I have had to start sharing a bit more but it it always a struggle. My boss when I was first diagnosed with ET was great as he asked me how it was affecting me, at that moment, and really my main symptom was fatigue and quite manageable... re telling people I think it really it up to you.. my son was young when I got this and so I have only given him some information.. I started out by saying I had sticky blood and needed aspirin to help.. and with those that don't need the detail I just talk about it as a disorder... The only other thing I found helpful was to think about it a bit like diabetes... a chronic condition that needs managing and where you want to maintain good general health.. good luck x

[ainslie in reply to Odysseus21]

Wow, that’s some post, it’s unfortunate you can’t emphasise/ understand her dilemma, it’s a difficult time when people are first diagnosed and she is showing a lot of consideration and strength by weighing up how and when to tell the family.

[Otterfield]

I used to tell people in a fairly matter of fact way, explaining that I had a condition which caused me to produce too many platelets. I would tell them that it was technically a cancer, but not a life threatening one. I wasn't worried about it (after the first shock) so they didn't need to be either.

[ainslie]

You’ve had some good advice already, most of us experience high emotions when diagnosed and sometimes the emotions are worse than the reality, this changes with time. Ideally, you may convey the information better once you fell calmer within yourself and gathered some facts. One important fact is ET is probably the best MPN to have and most have a normal lifespan if treated properly. Second good point is docs are quite good at treating it now but in 5 years or so likely new and better treatments will be available. As Maz said the MPN voice has good realistic info on its website re ET and treatments, always a good read for a reality check. Hard as it may seem at this stage there are lots of positives to keep in mind, I hope that helps.

[ritaandscooter1]

When I was diagnosed with PV in 2003 or age 43, it was called a blood disorder. To this day I tell people I have a blood disorder. For me who hasn't taken anything but aspirin and have hardly any symptoms, the blood disorder term works better. It should not be a difficult diagnose to discuss with others as most MPN people die with it not because of it. Best to you! Kerry

[MaggieSylvie in reply to ritaandscooter1]

I wouldn't know a symptom if I had one. Probably put it down to the other side - MDS - or to fibromyalgia. I'm old; I fall asleep during the day. My partner, Type 1 diabetic, is older, falls asleep during the day. People don't bother with us because we've got problems and are boring. What I will say is that my haematologist is great at getting extra x-rays and scans if I have a problem, that's most likely unrelated to my MDS/MPN. I wonder now why I told people what I've got, except I do know - it was because it was mindblowing to have a diagnosis like this one, that I wasn't expecting and had never heard of.

[Janis12]

Hi, bit of a shock but once you become educated you realise that the situation is manageable and you can get on with normal life. I have ET diagnosed three years ago, sadly my parents had already passed away but I am sure they would have worried so I would have used the 'blood condition' for them as the diagnosis. I use the cancer diagnosis when I want my partner to massage my feet, he hates doing it so I pull my trump card and in a feeble voice I say 'I have cancer you know', we both burst out laughing and then I get what I want....win win every time!! Your mind set will change once you get used to the diagnosis, I am doing everything I did before diagnosis which includes a lot of exercise and because I am open about my condition with friends and family they are comfortable asking me how it's going, talking is a great therapy. Good luck.

[Mostew]

So glad you have found this site . It’s a great comfort to share all our emotional ups and downs with others who really understand…

No question is ever to small or ‘silly’

I agree with people who say choose who you use the wonder cancer with. Blood dsorder is so how less worrying but honest as well .

Hope you are feeling ok

[Solyesh]

Interesting question - Given the suspicions of my GP (who referred me to an MPN specialist), I had a degree in Dr Google by the time I had my first appointment with the specialist and got the semi-official (post bloodwork pending BMB) diagnosis. He was great - he said as I myself had suspected given my bloodwork that it was likely ET and I was Jak2+. Final diagnosis would be confirmed with a bone marrow biopsy..but he said the famous "you are more likely to die with ET than from ET" - it was a lot to take in for someone in their 40's with 4 kids. I waited a week before telling even my wife as I wanted to be able to frame the conversation correctly. It has been 3 years since official diagnosis and we still have not told the kids. Mainly as my wife battled a very serious case of breast cancer when they were a little younger and the C word scares them (and they would not initially grasp the differnce between the little c and Big C) - also it has not impacted my life very much so for them not a lot has changed.

I have shared it with a few friends and I am always sure to mention that it is a treatable chronic condition that was re-classified as a cancer about a decade ago. The reclassification, I explain, was actually good as it has drawn additional interest, and more importantly, research funds into a very rare disorder. With these friends, I let them drive the conversation as to how much they want/need to know.

[Looolooo]

I was careful not to use the c word with the oldies, because they can have some fairly fixed ideas about it. With young adult children, I was more matter of fact using the more likely to die with than from line. Some friends I haven't told at all as likely to overeact. It's your condition so it's your call. Hope it goes well.

[shiftzz]

The C word. I was being treated for PV, I hadn't googled it much, anyhow after about a year my consultant gave me a form to get free prescriptions and he had ticked the box CANCER. I came home in shock, that was the 1st I had heard of it being cancer.

[Carlalawoo in reply to shiftzz]

Oh my, that wasn't a nice way of finding out. My doctor was great and explained everything very well. He said he thought it could be MPN, but used the long words, which I was never going to remember. Didnt confirm it or go through anything with me until after my BMB. Had a cancer nurse and lots of info at my appointment when they conformed the diagnosis. Wishing you the best

[Exeter21]

I agree with Hunter. I read up everything & left it until after I knew properly. I also consulted an MPN . When I told my children they read up on it & were so knowledgeable & just said.

Get on with it mum & put it on the back burner . Education on food is important .

I got both my children to have blood tests for ET too. I continue with healthy activity & travel. I changed from Hydroxy to Interferon & feel very good . We are lucky to find out we have it as many never do .

👍. Julia UK.

[Looolooo in reply to Exeter21]

Key point. 'We are lucky to find out, some never do'. This is my approach too. It can really change your perspective on the condition.