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Hi, sorry to be morbid but is there anyone on here that was first diagnosed with stage 4 high grade kidney cancer . I need to know if there is some hope and treatments if this is the outcome. I have a large tumour on my kidney and gross haematuriu was my symptom so I am automatically thinking that it is high grade also as the lump is classed as a large lesion . Will there be treatment that helps me if this is the case. 

  • Hi  ,  many folk on here have stage 4 kidney cancer and know how frightening it is when you get that first diagnosis.  My husband has a large tumour - 14cm, but there are bigger in this group - not that this is top trumps of who has the biggest tumour! Slight smile   My husband is alive and well 3 years into his diagnosis.  There have been ups and downs, but he is determined to enjoy life and retirement as he planned around the treatments - and there are plenty of treatment options, mainly Immunotherapy and Targeted Therapy (TKIs), and advances are being made all the time.  

    Over the next few weeks you will go through various test so they can understand what type of kidney cancer it is , Renal Cell is the most common, and if the cancer has spread at all. You will have many questions - most of which you think of after you leave the consultant!  I can see  gave you some good advice to write down your questions, so that you have them ready.  Your consultant will talk your treatment options through with you once the results are in.

    It might be worth giving MacMillan a call so they can support you as you navigate your way through the coming weeks.  

    I won't say "don't worry" as we've all been in the same place you are now.  This part of the journey always feels the longest, but you will soon understand what your own particular journey looks like and the next steps.  Once you know that and share it here, there will be others who have trodden a similar path and can offer support.

    Hang in there.


  • That really helps , thankyou so much for that  Had your husbands cancer spread on diagnosis or was it contained . Also did he have a high grade cancer. Thanks again 

  • My husband's cancer was detected through gross haematuria too.  It happened just the once, but we went to the Dr's straight away who booked him in for an ultrasound and camera check.  The tumour was found on the ultrasound.

    In the few weeks after this, he had various scans and biopsies.  It was determined that his cancer had spread to lungs and lymph system and was high grade, hence the stage 4 diagnosis.

    We have been to every appointment together and agreed the approach we wanted to take - we like to know facts and are happy to be told straight what is going on.  This isn't the approach for everyone, but it works for us, and I'm always led by my husband.  It's about him, not me.

    Communication is key.  Don't wait to be told "stuff" - they may think you don't want to know.  If you have questions, ask them.  The other thing we did from the start was that my husband gave permission for me to talk about my husbands health care with all providers, e.g. GP, Hospital, Consultant, MacMillan etc.  That took the burden off him for dealing with all the admin stuff, sorting out appointments etc.  I do all that and let him concentrate on dealing with the treatment.

    Do you have family  ?

  • I have the best family 

  • You have made me feel better xx

  • Brilliant! Green heart  They will want to support you in every way, so let them.  You'll all find your natural support routine as it you go along.  xx