Being diagnosed with EHE

Hi and welcome to the online community

I'm sorry that you haven't had a reply yet and that you're struggling at the moment. This is a good place to be able to express your feelings when you don't want to worry your family.

I didn't know what EHE was so I've googled it and think it's Epithelioid Hemangioendothelioma, a type of soft tissue sarcoma. If that the case you might like to join the soft tissue sarcoma group where you can share experiences and get support. To join just click on the link I've created and then choose 'Join This Group' on the page that opens. You could then copy and paste your introduction from here by clicking on 'Start A Discussion' which you'll see near the top of the page.

If I'm wrong about what the initials stand for please let me know and I'll point you in the direction of a different group.

Wishing you all the best

x

Hi yes that’s correct it’s so rare it’s not known by many people even specialists but I’m in good hands with Mr Johnston from Stanmore hospital in Middlesex. With my diagnosis they usually like to do the wait and watch proceedure although my tumour had grown and was causing severe pain as it was growing from the main artery in my arm. I’m just struggling with the what ifs and can’t let myself think about the future , I feel over whelmed when my family talk of things In years to come and I’m wondering will I still be here and I’m not usually negative but feel so out of my depth with all this and not having control !!!  I see the stress in my family’s faces and can’t open up to them and worry them more than they already are. Thankyou for your time with replying and wishing the positive path you are now on always stays positive xx

I'm glad to hear that you are in good hands . I do fully understand the what ifs. I'm due a 3 monthly check-up next week and can't help but worry that they'll spot something I haven't seen and I'll be back on that treadmill again. I think unless you've had cancer you don't fully understand how the worry of reoccurence never fully goes away.

Thank you for your good wishes and I hope you have many more years ahead of you too!

x

It is just constant worry isn’t it , hopefully next week will bring you good news, doesn’t stop the stress though. And that’s exactly right unless you have cancer there is no real understanding of what you go through, I keep being told il be ok but it doesn’t stop me wanting to scream yes but I have cancer and I’m frightened, and have this to deal with forever now!!  I’m just hoping for the positive days !! Keep me posted on how you get on il have everything crossed for you xx

Just thought I'd let you know that after a thorough check over nothing untoward was found on my skin!! That's me now for another 3 months.

Thanks for asking after me and all the best to you

xx

Im so sorry I’ve only just seen this but wow what fab news I’m so pleased for you. I’m still trying to work out how to get notifications and then find my messages on here. But what lovely news . I’ve only a few days left then Friday have my follow up appointment and will find out my care plan I’m hoping routine scans mris and that’s it and not find out my specialist has more up his sleeve for me ... anxious times ... Thankyou so much for the update xx

Hi haven’t been on here for a while , how are you doing ? Xx

Hi

It's nice to hear from you. How are you doing?

I have the next of my three monthly check-ups next week although it will be over the phone, as my last one was. Although I'm not aware that I have anything to be concerned about I'd still rather see someone face-to-face to be physically checked. I'm going to ask when they expect to start 'proper' checking again when I have my consultation next week.

x

Hi , yes I think the one to one in person always gives us peace of mind , I’ve been having my too time scans etc and all was stable up to January, julys CT has shown growth of nodules in my lungs only by 1 mm but still new activity and now have a new lump appear above 4 months ago I left it Hoping it would just disappear but hasn’t and has all the same symptoms as my tumour had in my right arm so having MRI on both arms tomorrow at the UCLH and then results via phone on the 28th so at present my anxiety is through the roof need the 28th to hurry along so I know what I’m dealing with ..... let’s hope you continue to stay on the right path of being stable xx

Sorry to hear that you need some more investigations. I totally understand how stressful it is waiting for results, especially when you have the same symptoms as before.

Wishing you all the best for tomorrow

x