Recently diagnosed

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Hi, I recently took myself to a&e due to severe headaches I'd been suffering for about 2 weeks. A CT scan of the head showed mets in my brain. This was followed by a full body CT, which also found mets in my lungs. It was suspected they started in the kidney (which has now been confirmed). When I was told it hit me and my brother and sister like a freight train. Like everyone else, I never expected to get that diagnosis. I've had problems, and been under the urology consultant for the past 12-13 years following a traumatic brain injury I sustained whilst abroad. I had a motorbike accident and ended up in hospital in a 3rd world country, on kidney dialysis. 

I had a camera passed into my kidney in January this year for further investigation and I was found to have a 2.5cm mass. A biopsy was taken which I was told was benign.

I had a CT scan in March which apparently picked something up  but this wasn't followed up or brought to light, until I took myself to a&e 4 weeks ago. The mass had grown by 1cm in 2 months. I'm not the first and sure won't be the last to be let down.

I'm having stereotactic radiotherapy therapy at guys hospital tomorrow for the brain, and the urology oncologist has told me that they're looking at immunotherapy to treat the other. 

To be honest I'm very scared at present and I'm most scared of  breaking the news to my two young children (12 & 8), who currently do not know. Their mum and I are no longer together, but we are still on good terms and very close.

I was told not to drive and my mobility isn't the best since the brain injury, so I've just been staying at home alone, and I suppose, burying my head a bit.

I've had a lot of support from my siblings and friends. 

I'm 45 years old and would really appreciate a bit of advice on what to expect, and how to deal with this journey, as a young man?

Thank you and may strength be on your side. Muscle

  • Hi  

    Welcome to our community though sorry to hear about everything you have been through. My experience is different in that it is my wife with cancer but our son was a little bit younger when my wife was diagnosed. My health has not always been the best too and one question my son asked was what would happen to him if I died too - ouch.

    We do have quite a good guide on talking to children here and it is worth bringing their school in too so that they get the same message from any of their trusted adults. Often children will notice what is happening and can imagine things much worse that they might really be and sometimes even blame themselves for something they did.

    <<hugs>>

    Steve

    Community Champion Badge

  • Thanks Steve. I'm sorry for your wife's diagnosis. My kids mum is also very poorly with Lupus and fibromyalgia, so initially that was my biggest fear - my children being left orphans at such a young age and how it would affect them in their future lives, as they are both sensitive souls. I did call the McMillan line to get some advice and they've sent some books out to read together.

    So, for now I'm just going to keep on keeping on and trying my best to stay positive, and adhere the advice I've been given.

    Much love 

    Rich Heart

  • Hi rich . Sorry to hear of your diagnosis. I am to also young 37 and my wife is pregnant. And to say so far has been a rollercoaster would be an understatement. I have been diagnosed twice in the last few weeks to which I found out the latest is hereditary so that’s a tough pill to swallow and I should have been getting tested from 10 years old . My care will now to be under guys I am awaiting there call . I currently started ipi/nivo immunotherapy but that is very much subject to change now . As mine is super rare so I’m not sure what way there go 

  • I'm sorry we meet here.  It sounds like you're just starting treatment now?  From my experience and looking back, the time from investigations, diagnosis until treatment is the worst time.  The waiting and the uncertainty.  I couldn't wait to start immunotherapy.  After I started I noticed I felt better and I got into a grove.  I couldn't wait to get more immuno every 3-4 weeks or go to scans or chat with my onco.  I'm lucky that I had a good response to the drugs and over time it just all came normal routine.  Now, I'd fed up with it all!  Hopefully once you've had a few treatments you should notice a difference and it won't be so uncertain. 

    My young people were a lot older when I was diagnosed, 18 and 21 so it was a conversation on a different level to yours at 12 & 8.  But children are very resilient and accept all sorts of situations.  At the end of the day, you're still their Dad.  

  • Also, I was similarly concerned when and how I would tell the children.  First it was easy to tell no-one for 4 months because we didn;t know anything ourselves re treatment or even the cancer type.  Then my daughter was sitting pre-lims (mock exams) so we left it until after those.  By that time 8 weeks had passed since diagnosis and I had moved along the acceptance/shock/what-happens-next pathway and so that made it easier too.  My husband thought I made the message too soft.! Haha  Grin

  • Hi Kyle,

    I'm so sorry for you and your loved ones. I completely relate to it being a rollercoaster alright. 

    I will say this - guys are fantastic at what they do. It's all about holding onto the little thing now.

    May love and strength be with you my friend Heart

  • Hi Mmum, sorry for your diagnosis. I think the not knowing enough at present makes things difficult, so I'm hoping when we know a bit more of what we are dealing with, then we can plan where to go from there. 

    I was different in regards to telling people. Almost like having that information to contend with was too much for me to deal with and I needed to offload, but a lot of this could be to do with my brain damage.

    Love and strength to you all through this Heart️ 

  • Thank you , I hope they contact me sooner rather than later . As this whole process has been a lot more unknowing than being in the know . Which is of course the worst part .