ET diagnosis at 18

[Gordem100]

Hi

My Son has just been diagnosed with ET at the age of 18 - bit of a shock to say the least . Just wondering what to expect as a parent

[hunter5582]

Hello and welcome to the forum. Your son is fortunate that he has you to reach out for resources to manage having a MPN.

It is alarming to learn that your child has ET and that it is considered to be a form of "cancer." It is important to understand that ET is a chronic form of cancer not an acute cancer. We sometimes call it cancer with a little "c" not cancer with a big "C". Most people with ET will live a normal lifespan when the condition is properly managed. Please know that ET is a condition that can be successfully managed.

I was diagnosed with ET over 30 years ago, when I was in my 30s. It progressed to PV about 10 years ago. I have lived a good life while managing the MPN and at age 68 continue to do so. My daughter was also diagnosed with ET in her 30s. It appears we are one of the Familial MPN clusters that are known to occur. She is also successfully managing the Et and doing well.

The pediatric and young adult MPN population is much smaller than the older adult population with MPNs; however, this does occur. There are some differences in treatment considerations for this age group. It is best to consult with a MPN Specialist who is familiar with treating this age group. Note that MPNs are rare disorders. Most doctors, including hematologists, have little experience with them. This is even more so with the young adult population. Finding a knowledgeable provider is very important. mpnforum.com/list-hem./

Here is a bit of what is available regarding MPNs in the younger population. There is more available about MPNs in general and MPNs for younger people.

The MPN Voice Young People and MPNs blog run by the fabulous Alice is a great resource. your son would benefit from interacting with others his age. mpnvoice.org.uk/about-us/yo...

One of the Pediatric MPN Centers. pediatric-mpn.weill.cornell...

Additional information

mpn-hub.com/medical-informa...

mpnresearchfoundation.org/p...

mpn-hub.com/medical-informa...

youtube.com/watch?v=-xU1kQh...(Not working as expected?)

Wishing your son success as he moved froward managing the MPN.

[Gordem100 in reply to hunter5582]

Hi Hunter - thankyou so much ! I realy appreciate it . I like the small c cancer analogy- that is far less alarming- I am doing work of a specialist already - I will signpost Alice’s work - but not sure it has sunk in yet - and I am perhaps shielding him

[hunter5582 in reply to Gordem100]

Trying to shield him is a natural parental response. Add to that, 18 year old males generally think they are invincible healthwise. It is very important for young adults to learn to manage their own health and healthcare. The truth is, many older adults struggle to do this.

There are some excellent resources on transitioning into adult care for youth and parents here. gottransition.org/

Wishing you and your family all the best.

[Steve_Essex]

it’s tough being diagnosed any age, but at 18 when you think you’re invincible and still discovering who you are and want to be will take some adjustment.. and support

Hunter has provided links to some great resources and support networks with people who are a similar age.. I’d definitely recommend your son joins.. even if he sits back and just reads other people’s stories / posts until he’s ready to interact..

it’s also important he educates himself on lifestyle choices that can help manage symptoms and reduce risks of clotting etc..

I was diagnosed 36, standard blood test with no symptoms but picked up raised platelets.. was diagnosed with ET which was adjusted to PV..

I try and keep active - gym 3-4 times per week and a couple of cardio sessions.. I eat moderately clean through the week.. lean meat, fruit, veg.. but still indulge when I want to.. also I like to have a drink.. but make sure to keep hydrated in between and before bed.. ( that’s important )

I try and take control of the factors that I’m in charge of and try not to worry about the rest.. although I have had the occasional wobble - this group has been ace at providing the support I need..

I’m also positive that medical advances will exponentially improve over the next few years.. treatment options are much better now than 15-20 years ago and hopefully your son is some way off needing any treatment beyond aspirin anytime soon!!

Wishing you and him all the best

[Gordem100 in reply to Steve_Essex]

hi - thankyou ! He is very much a teenage boy !

[JustKeepSw1mming]

Hi Gordem,

I was diagnosed at 28. Purely by accident, during a routine blood test.

I agree with Hunter and Steve, luckily there is more and more information about it now and I am sure the quality of treatment will also get better and better!!

When I was diagnosed, I was told I could lead a normal life, just needed to take aspirin and be smart about hydration, not being too hot or too cold etc.

Your MPN specialist will work closely with your son to advise him.

The forum has helped me a lot as well.

Good luck, take care of yourself as well and know that you are not alone in this.

[Gordem100 in reply to JustKeepSw1mming]

Thankyou - he gets migraines which. Got worse and then fatigue that I put down to a respiratory bug that got us all the back end of last yr . I am ok - I work in the NHS and saw it coming a bit - but you always hope you are overthinking

[Ebot]

Hi Gordem. I’m sure others with direct experience of being parents of young MPN patients will respond - there are definitely a few on this Forum.

Just wanted to highlight that MPN Voice has been doing a lot recently around the needs of young MPN patients and has launched various initiatives aimed directly at young MPNers.

Clearly the needs and concerns of young people with MPNs will be different to those of the traditional, older MPN demographic.

I wonder if there is anything in the pipeline aimed specifically at supporting parents / carers of the younger cohort. Perhaps Maz might respond. Meanwhile do check out the MPN Voice website.

Wishing you and your son well.

[Gordem100 in reply to Ebot]

Thankyou so much ! He is very much a teenage boy and very laid back

[Trainer12]

my daughter was diagnosed five years ago at the age of 19. Like you a complete shock and it took us as parents quite a while to get on top of the health condition and to separate the situation for such a young person from that facing older patients. I would suggest as all on here will to make sure you have an MPN specialist taking care of your son not just a haematologist with an interest in MPNs. Our initial diagnosis was not handled well by the local haematologist and the wrong information was given to us which made a bad situation much more traumatic. Once I was introduced to Claire Harrison at Guy’s London things were explained and my daughter as an individual was cared for rather than just what the textbooks say for the average MPN sufferer. I don’t know where you and your son are but I would use Hunter’s list of specialists to guide your decision even if this means some travel. We travelled more than 250 miles to get to see Professor Harrison but this is usually only once a year. Even when abroad for studies the Professor answered e-mails and gave advice when my daughter had issues or health concerns. I would be more than happy for you to contact me with any questions you have and I know my daughter would do the same for your son. It is a scary time at diagnosis but my daughter has continued to do everything she loves including swimming professionally for a division 1 NCAA College team, living in the U.S. completing two undergraduate and a Masters degree and now back in the UK training for the London Marathon in aid of MPN Voice who have been another source of support and information on our journey. As my doctor friend said when I telephoned him in a state after the diagnosis, ‘ Robyn went into the surgery healthy and that hadn’t changed through being diagnosed’.

[Gordem100 in reply to Trainer12]

Hi Trainer

Thankyou ! I live about 10miles from Guys so will definitely look up Professor Harrison! Did you self refer ?

[Trainer12 in reply to Gordem100]

That’s very good luck then! Yes just ask your present haematologist to refer you . They should know of her anyway. I was lucky enough to meet someone who had set up the MPN site with Professor Harrison and so I was able to contact her directly. I can’t tell you how much she has got us through these last five years! Contact her ASAP and she will see your son, do all the bloods and maybe a bone biopsy to get all the facts and explain everything so clearly for all of you. She has quite a few young MPN patients which again makes all the difference. Good luck and do let me know how you get on. It is also important to keep in mind that the platelet count is not the key factor in risk. Robyn’s is 1.5 million! Yet she has been lucky with her symptoms compared to lots of people with far less of a high count. She has just last week commenced medication after merely taking aspirin for five years. It seems the advice towards the stage of intervention has recently changed so the professor will have very up to date data moving forward. Best wishes and feel free to ask any questions .