New here. My kidney cancer journey so far.....

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So I thought it would be good start for me to say hello and tell you about my story so far.

At the end of May after experience some blood (only once) in my urine, I spoke to a urologist and had a number of tests which showed a tumour on my right kidney and also an enlarged adrenal gland.  He recommended nephrectomy keyhole surgery to remove the kidney and adrenal gland.  That was completed at the start of July successfully and I have been recovering well.

I went to see my consultant last week to discuss my recovery and next steps.  Again he reiterated how pleased he was with my recovery, checked his handy work on my scares etc.  He then proceeded to tell me that although they removed both organs, they had seem that the cancer had spread to my adrenal gland before it was removed.   And because of this I am now in the high risk category for it coming back.

He has suggested that I can join a trial coming up which would focus on immunotherapy and I am waiting for someone to contact me to talk it through, to see if I want to participate.

It has left me not really knowing how to feel about it.  I feel happy with the surgery, but not sure about the rest of it.  He has also booked me in for a 6 month scan, but assume if I join the trial I will be checked more frequently.

  • Hi Bantam fan  welcome to a fantastic support network and to answer one of your questions.

    I was in a similar situation and offered a immunotherapy trial after my surgery it also involved a closer look via CT scans and blood tests.

    I think we all have the fear of not knowing or not being in control of circumstances. Have you been given a Macmillan nurse or contact if you need reassuring talk to the team support it helps so much.

    Stay positive and safe

    Mike 

  • Hi Mike,

    Thanks for your reply and for answering one of my questions.  It's all been a bit of a whirlwind.

    I saw my consultant last Thursday when we discussed the trial and he said the trial team would be in touch.  I was also introduced to a nurse from the Url-oncology nurses team at the hospital.

    I have a phone appointment with my GP tomorrow where I intend to ask some questions, but that's as far as I have got so far.

    Thanks

    Chris

  • So the trial team have called me this morning and talked to me about the Rampart study at Leeds St James.  Sending me all the info through and calling next week to see if I have decided to participate.  My main worry is about me having 1 kidney, otherwise I am positive about the trial,  It was nice to hear someone else say they removed all visible cancer again.

  • That all sounds good, B.  I'm sure I've seen someone else post about this trial in the last 3-4 months.  Good luck and let us know what you decide and how it goes! 

  • Hi Bantam fan I am still on the Rampart trial @ JCUH but unfortunately no longer receive the treatment as I had side effects however I strongly recommend this trial as I have only 1 kidney after my surgery. 1 large bonus is the monitoring and support you receive from the team with bloods and CT scans but everyone is different and I share your worries but if this works and helps another person in this situation it helps you to process your own journey.

    Read all the information and ask questions which may seem silly but they have heard it all ( I asked my consultant for a car park pass) 

    It's a lot to take in and from my personal experience not trying to acare you I believe that being on the trial has saved my life due to monitoring but everyone situation is different.

    Please talk to your support team and family and friends as it's a good sounding board for ideas.

    Hope this helps you just to give you a Idea of what to expect.

    Stay positive and  trust me youre in a good place.

    Mike

  • Hi Mike

    I am 95% certain I am going to do it. For the exact reasons you have given especially the 1 kidney. My mum is a dialysis patient after contracting an auto immune disease during Covid height. I’ve seen how hard it’s been to get her settled into a routine and how tying it is.

    Im heading off to Whitby for a weeks holiday this morning and will take the paperwork and have a good read.  I’ve also got a telephone appointment with my GP today too.

    Thanks again for all your positive words over the last couple of days. 

    Chris

  • Hi Chris have a good holiday in sunny Whitby I am going just up the coast in a couple of weeks.

    Good luck

    Mike