New to group and new diagnosis

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It's been an interesting few months! I was originally diagnosed with arthiritis last year which was restricting my mobility. Then I slipped down the stairs and fractured my hip. While being treated for that scans revealed a T2a lesion 7 x 6 cm on my right kidney with likely adrenal metastasis and a lytic lesion on the left greater trochanter with concerns this could have spread to my bones and contributed to my hip fracture. 

Like many others I seem to be in that limbo period between initial diagnosis and biopsy results being available and MDT and treatment plan in place. The symptoms are more mental than physical at this stage although I still struggle with my mobility, get very achy and tired and suffer from lack of sleep and headaches (I'm sure that is stress related). 

I try to have a positive mindset but often struggle to keep that going. The uncertainty at the monent is just horrible. Despite having an amazing wife and family and great friends who are all supporting me, I thought it would be worth while reaching out on here to connect with people that are going through the same thing. 

Look forward to hearing from you! 

  • Hi there.  

    Yep, the uncertainty and the waiting!  We've all experienced it and it's not nice.  I tried to live day-by-day, keep myself busy, then it would be the weekend and that's another week ticked off.  I lived for the phone calls which would be progress, albeit at what appeared like snail's pace.  Every scheduled appointment was a step closer and it helped having something to count down to.   

    I suppose every region has their own typical timescales.   As you've had a scan and a biopsy you don't seem far away from tangible progress.  You could always phone in and check what they're currently waiting for - to be on the MDT list or if further tests are awaited.  Or if you've been referred somewhere you could check the receiving team have received it.  It reminds them you are still waiting.  

  • Thanks for your reply.... the support is appreciated and even that cheered me up a bit :-). 

    Yea, I try to keep busy too but that isn't easy given my mobility issues and because I get so tired. I am never sure whether the aching and discomfort, in my legs and lower back especially, is arthiritis, hip fracture recovery or something more sinister! 

    I have been off work for a month or so recovering from the hip fracture but am going to attempt to return tomorrow on reduced hours and working from home. Hopefully, that will give me another distraction until I know what is going on. And yes, I am intending calling the Clinical Nurse Lead today as well. 

    What is your situation and how are you doing, if you don't mind me asking? 

  • If you click on an avatar, you can read people's bio/history etc.   I have stage 4 RCC, spread to lungs.  I have been oon immunotherapy for 2 years now.  Lung metastasis undetectable, primary tumour decreased from 59mm to 23mm.   

  • Great news from Mumm!