Pineal tumour with drop metastases to anterior clinoid process and intramedulary at T2/3

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My 33 year old son was diagnosed with a PPTID in his 3rd ventricle in 2012. He had gamma knife radiation for it and it shrunk the tumour and stopped it growing. He has had 6 monthly MRI to check it and every time it has stayed the same. I think this lulled is in to a false sense of security. This December after his routine MRI, he was called beginning of January to be told there had been a change. He had an urgent MRI that week and we went in for the results 2 days later. His tumour showed signs of enhancement and it has also spread to his anterior clinoid process and also in his spinal cord. He had been feeling numbness and shooting pains in his chest under his arm and went to his GP about it who gave him nerve tablets,,we now know it was the tumour in his spine causing this. We are now waiting on results of a lumbar puncture to see what the tumours are with a view to going to The Christie for possible treatment. My son had a text today with a time for an appointment tomorrow where we hope to get some results and a plan moving forward. To say we are heart  broken is an understatement… he is handling this so well, I am being strong for him and his dad… I just don’t know where I can get advice on how to help his dad who pretty much hasn’t stopped crying since we found this out. After his first diagnosis our sons relationship fell apart and he moved home so we could take care of him as he lost all his confidence., he has a 10 year old son who comes to stay every other weekend too… can anyone tell me what I can do to support my husband through this? I just don’t know what to do..and where to turn. This is so hard…. 

  • Hi  MrsEmma

    a warm welcome to the group. What a lot you have going on, I hope your son's appointment today has gone smoothly and allayed some of the fears of the unknown here. It's such a lot for everyone involved to take in.

    I am supporting my husband through his stage 4 glioblastoma journey and supporting our two kids (21 and 24). It's been an emotional roller coaster ride for the past 17 months for us. This group and Carers only forum - Macmillan Online Community have been a great source of support for me personally. Friends and family are great but they don't always "get it". On here within the community there is always someone available to listen and offer some words of wisdom and even the occasional virtual hug.

    It’s always good to talk so please remember you can call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.

    As for what you can do to help your husband through this, all I'd say is be there for him. Listen. It's such a lot for everyone involved to take on board and everyone reacts differently. There's no right or wrong way to feel or to act here. The one thing I've repeatedly said to my kids is that we need to stick together. We need to be on the same page here and be there for their dad. We are taking it one step at a time, one day at a time. My husband's diagnosis was terminal from the start so it's case of being led by what he needs/wants from us too.

    Please make sure you take time to take care of yourself too. It's all too easy to get caught up caring for everyone else that we forget about ourselves. Taking "me time" is essential here.

    For now I'm sending you lots of positive vibes and a huge virtual hug. Stay positive. Stay strong.

    love n hugs

    Wee Me xx

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

  • Thank you so much for your support… my heart goes out to you, the whole journey is just one wait after another…

    The outcome today was that they want to remove the spinal cord tumor if it is safe to do so and definitely get a biopsy either way. From looking at the cells they can then be 100% on offering the correct treatment… 

    Its a step closer to moving forward so at least we have something to look towards. Pre op on Weds and op in the next 2-3 weeks…

    Sending love and strength to you and your family x

  • Stay positive, mrsemma. One step at a time


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

  • Hi emma, im sorry that you have had this news but im sure they will give him the best treatment that they can. i have recently been diagnosed with a possible pptid found because i had a hydrocephalus caused by it. Its horrible playing the waiting game as they are still not aware if it is that for sure as they were unable to biopsy it so i need 3 monthly mri scans to find out if its benign or malignant. The problem is im a scrub odp for theatre and have seen too much so as you can imagine my anxiety is awful and i analyse everything from peoples reactions to every symptom im having.  Im 36 with 3 young kids, a partner and a very supportive family and friends and its been tough for everyone. My partner has cried so much he feels heartbroken,  my parents have been upset but are being positive and supportive. I feel like having a chat about things when things get too much really helps me and them, having the deep chats, explaining how you truly feel helps, yes its upsetting and scary but it helped me to a certain degree. My dad was crying the other day because i was so upset and scared with everything we both couldnt look at each other without crying, it ruined me seeing him so upset. Ive gone through a divorce and its still ongoing and honestly ive met the love of my life now and although ive known him for 14 years we have been a couple for 18 months and never been so happy and this thing is in my head has appeared typical. All i wanted to do was push my partner away as i didnt want to put him through this, i was so concerned and felt a massive feeling of guilt towards my family and friends by worrying them so much putting them all through this, its tough but you and your husband sound like amazing parents, he is very lucky to have you both like i do with mine. I hope your all okay and especially your son. Xxx much love to you all. 

  • Hi have been thinking about your son lately, how is he, how are you all xx