Anyone else on here thats been diagnosed with a pineal parenchymal tumour with intermediate differentiation

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  • Hi just wondering if anyone else has had any experience with regards to a pineal parenchymal tumour with immediate differentiation. Looking for some advice or general information off someone who also has this. 
  • Hi Flowerpot1

    sorry that no one else has shared their experience yet with you. I hope someone see this and has some words of wisdom to share with you.

    Please remember that you can still reach out via the helpline for guidance. The telephone number is below.

    Stay strong. Stay positive.

    sending love n hugs

    Wee Me xx

    Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm

  • Hi hannah here, saw that ypu replied to my post. How are you 

  • Hi Hannah, yes, sorry.  Managed to hit reply too soon, and also managed to do it twice somehow!  I was searching the internet for some info on PPTID and came across your post.  I see it's 5 months old, so you likely know more about your tumour now.  My husband was diagnosed with this at the end of 2020 and it is very difficult finding information on it.  Hope you are doing well!

  • Hi thanks for replying, unfortunately i dont know much about it myself, apart from it a very rare tumour. I was told it might not even do anything and at thr moment im having 6 monthly mri scans to keep an eye on it. I had my 2nd one on sunday will be chatting to the consultant monday. How is your husba d feeling how did he find out that he had it. How are you coping with it all. We have all been on a massive rollercoaster of emotions. 

  • He's feeling much better now.  It was a huge shock as he'd only been having problems with his eyesight.  We thought he needed new glasses, but the optician saw swelling behind his eye and referred him to the eye clinic.  Everything moved so quickly after that.  They saw the tumour and that it was causing hydrocephalus.  Tried to do an EVT and biopsy, but neither worked.  Then he had a shunt fitted instead.  After that, they removed around 90% of the tumour and 6 weeks of radiotherapy.  He has yearly MRIs now, first proper one is due later this month.  He is generally a positive thinker, so he's coped really well after the initial shock of it all.  It's strange how you have both had such different approaches, but I know each person's case is different.  I hope you get good news on Monday!

  • Well ive had migraines for about 5 years and i would get visual disturbances and numbness in my face all depending on what side the migraine was and numbness in my foot which would eventually go, thPensive particular one didnt go and i felt like my eyesight was bad like i was looking under water. I was told to go to A &e in bridgend as they thought it was a possible stroke. They scanned me and found Pensive15mm lump on my pineal gland which had blocked the flow of csf fluid so needed emergency surgery. They dont a 3rd ventricularostomy and sent csf fluid away for tumour markers which all came back finPensive They tried to biopsy it but couldnt due to the location and my blood pressure was going to high. If im honest im a scrub nurse and have scrubbed for many cancer cases and i find it hard to believe Pensiveey wont remove it for me as mormally thr best course of action is surgical removal then radiotherapy if needed. They wont even entertain radiotherapy unless they need too apparently. I would rather Pensiveem remove it or shrink it as i have read the etv isnt a long term measure and. Could close leaving me in a dangerous position again. I have been told that they dont want to poke the sleeping bear unPensivess its obvious that its malignant or growing causing me issues. Honeslty i have struggled with this as i wouldnt want to leave something in there that could potentially change although ive been toldPensivet might never do anything. I have days where i feel my head just isnt right. Like this week ive been sooooo tired and have had feelings of pressure in my head which scares me. I had 3 migranes yesterday so i basically spent a day in bed, which isnt like me at all. I am tempted to get a 2nd opinion although my consultant  is highly rated, who was your husbands consultant. I had my surgery in cardiff 2020, how old is your hubby, im 37 this year with 3 young kids and an amazing partner and have felt very angry with the world considering i look after myself. I cant believe there is someone who actually has the same as me  i don't feel so alone now, so a massive thank ypu for messaging me.  Im so surprised they could see it during an eye exam i thought it was too deep. I had an eye exam about 3 weeks before i was admitted and they didnt pick up anything. I hope his scan goes okay.

  • Im not sure why there are loads of sad faces in my text !

  • The optician looked behind his eye after his vision test, and noticed his optical nerve was swollen.  This was because the tumour had blocked his CSF from draining, so it caused pressure in his head that pushed his eyes forward.  The first time I met his consultant, she said that it was either a grade 1 pineocytoma or a PPTID, going off the scan.  Given that they couldn't be sure which, she felt it was best to operate, rather than leave something when we didn't know what it was.  I've read that PPTID can either be grade 2 or 3.  Although, they don't seem to know much about how they behave. It sounds like it's already causing you issues.  Has your consultant operated in that area of the brain before?  My husband's tumour was 2cm.  He is 44 now and we have a 6 year old.  We're in Manchester.  His consultant is Miss Karabatsou at Salford Royal.  She had operated on the pineal area before.  It's good to speak to someone else going through this, you're the first person I've found!