Inoperable kidney cancer (for now!!)

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Hi everyone. On Tuesday this week I had the news that I had kidney cancer, which had spread to my lymph nodes in my peritoneum . The consultant said the lymph nodes were large and wouldn’t be feasible to operate at this time. I need a biopsy to determine the type of tumour (they suspect tcc) followed by treatment to hopefully reduce the lymph nodes so they maybe able to operate and remove the kidney. 

A couple of years ago I had a kidney transplant which is obviously not helping with all the immunosuppressant drugs I have to take. But I am a positive person and I have always believed half the battle is won in your head.   

The thing that is grinding me at the moment is the waiting and not knowing when the biopsy/treatment is going to start. Nothing is happening quick enough. 

Have any of you been through (and got through) similar??

Thank you

  • Hi! Welcome to the forum you didn't want to join! You'll get lots of support and good advice from this group.

    When my kidney cancer was diagnosed, it was found by a dermatologist, and the breast clinic, so it had obviously travelled a long way! I also had several enlarged lymph nodes in my peritoneum, like you.

    I was told that surgery wasn't possible, but have been having immunotherapy for over a year. This has shrunk the main tumours by over 50%, and the smaller ones, including the enlarged lymph nodes, have disappeared. I do not know if I will be offered surgery in the future to remove the primary tumour, but it is unlikely. I have to say that I had no idea I had cancer, and it has not caused any pain or symptoms.

    The worst thing is the waiting, especially at the beginning of your experience, when you are waiting for a treatment plan and a way forward. Nothing seems to happen quickly enough, and it can be a time of frantic worry and 'what ifs'. Try not to Google this, it will only scare you silly and a lot of the info on the internet is inaccurate or out of date.

    Clearly, your situation is complicated by your having had a kidney transplant, but your oncology team will know how to tackle this, or you will possibly be referred to a super specialist team who can. They will do their very best for you!

    That you are a generally positive person will help you with the next few weeks, hopefully. Do keep posting on here so others can offer support. I hope you don't have to wait too long for your biopsy.

    Sending virtual hugs

    Candysmum

  • Oh the Waiting!!!!   Yes we all experience this at the beginning and it's not nice.  It pops into your mind all the time.  Ever present.  I tried to take it a day at a time and break it down into small parts.  The appt letter, then the biopsy, then the results then the treatment.   Every day I'd think "I'm a day closer to blah", then the weekend etc  It really does get better once you start the treatment and you know what the plan is.  Good luck. 

    My wait was 24/11 (diagnosis) until 11/12 (biopsy) then 18/12 (onco meeting to decide treatment).  Then treatment started mid Jan.  Only 3-4 weeks so I consider myself very lucky.