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Hi I am a newbie my son got diagnosed with a pontine mass (tumour) 2 days after his birthday and is inoperable and no biopsy as this may kill him or seriously handicap him to say me his dad and younger brother are devastated is an understatement.After consultation and treatment plan was discussed he went for a blood test then was called  into his room and on discussion with him was told he could have 2 years 3 years and he even has patients that have gone 7 years.We have not told our son this information and are in a predicament wether to as before diagnosis he had a 8 year cocaine addiction and we feel if we tell him he may start useing again this may lead to his treatment plan being jeopardised.My other son thinks we should tell him but respects our decision not to as his parents we feel it should either be on a need to know basis or leave it to the consultant when no more can be done or he takes a turn for the worse. 

  • Hi Cazbar1967

    a warm welcome to the group. So sorry to hear about all that has been going on with your son. Life's too cruel.

    I'm currently supporting my husband through his stage 4 brain tumour journey. He was first diagnosed in Sept 2020 and its been a emotional rollercoaster ride for us all ever since. We have 2 kids (now 25 and 23). 

    As a parent its only natural to want to protect your son from the impact of his diagnosis and at the end of the day its your decision as a family whether you tell him or not or how much you tell him. I would encourage you to talk your concerns through with his medical team and ask their opinion here too.  Gather all the facts about how this diagnosis could progress over time and the impact it could have on your son's day to day quality of life before reaching a final decision.

    There's some great information on the main website about dealing with a diagnosis and how to support the person. Here's the links-

    Diagnosis | Macmillan Cancer Support

    Supporting someone | Macmillan Cancer Support

    Playing devil's advocate here and I don't mean to cause any offence but if you opt not to tell him the truth, and he should accidentally discover the truth or search online for answers, how will that impact your relationship? Pontine masses are not a type of brain tumour I am overly familiar with but how will you explain any physical symptoms he develops?  I  appreciate my husband's tumour is an entirely different type but most of his symptoms are cognitive - he can no longer read, his understanding and speech are compromised and the tumour has also severely impacted his eyesight. heaven forbid that your son should develop any similar symptoms, have a thought as to how you would explain those to him.

    Personally, tough as it  is and acknowledging the concerns you have, I would be honest with him but ensure he knows that his family are there for him every step of the way. 

    Any cancer diagnosis is a lot to process for all involved so please do not underestimate the impact this news has had on you too. Supporting someone through this journey can be gruelling so please make sure you take care of yourself here too. There's another group you might want to explore that I've personally drawn a lot of support from over the past 3 years - Carers only forum - Macmillan Online Community

    This online community is a safe and supportive space. I'm sure some of the other members will be along shortly to add their words of wisdom here too. There's always someone about to listen who gets it, someone to hold your hand and to offer a virtual hug when its needed, You're  not alone. We've got you.

    It’s always good to talk so please remember that you can also 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. 

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

    love n hugs

    Wee Me xx

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