Life upside down

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Hi - I’m 42 - RCC discovered in Feb completely by accident from a non related scan. Life has been turned upside down side down and inside out since. Had a partial nephrectomy at the end of April. Very successful op but has taken a lot out of me. 8 weeks post op and only getting back to normal energy levels this week. Bad news last week - Histology shows that the cancer is pHA1 which is good but it’s aggressive - rated 3 (out of 4). I’ve been referred to an Oncologist now and there are talks of Immunotherapy. Got the predictor back from Urologist and it’s saying a 35% of reoccurrence in the next 10 years! Crazy stuff - I’ve two small kids and my wife and I now have a genuine concern for my longevity. Very hard to get my head around all this - work commitments are now getting back to pre-op levels and I’m finding it hard. Don’t really know what I’m asking here but would be nice to talk to someone in a similar circumstance. Thanks. 

  • Hi there DJ83. It's a lot to take in I know, but from what you write I'd first say. There's a 65% chance of no occurrence in the next ten years.

    I think you need to speak with your oncologist and go through all your options, if you go down the immunotherapy route what % difference does that make?

    Try and take your wife with you and make notes, you will forget everything he/she says 5mins after you leave the meeting. Go in prepared with a list of questions and my best wishes going forward.

    PS. 8 weeks and just getting back to normal is very good recovery even for a partial. 

  • Hey DJ83 ,so I was exactly the same as you , found cancer by accident, 12cm tumour with aggressive rating of 4 , I was told without having immunotherapy there was 70% chance of return , with immunotherapy it will go down to 40%, i know it's tough to get your head around but live life to the full, what have you got to lose , you can spend the next how many years worrying that it will come back when it might not ever come back . I've just had my first immunotherapy treatment and everything was fine no side effects which is great , read my story on my profile for better understanding,  but as hard as it is for you think of your family and then tell yourself everyday that this won't beat you or take over your life , smash it mate I believe in you , you got this big man . Shep47

  • Thanks DC1 - glass half full it needs to be going forward. Very relevant point about immunotherapy and oncologist - much appreciated. Things would have been a lot different for me if this hadn’t been inadvertently found - positivity! 

  • Cheers Shep47 - great to hear such positivity mate. I’ve read your profile and fair play to you - I think your fitness levels coming into this and your attitude is driving you on. I need to take a spoon full of your attitude. Is your immunotherapy in tablet format? Fingers crossedthat side effects stay away Thumbsup 

  • Hey DJ83 , hope your going well mate , my immunotherapy is on iv drip I've had one so far ,I have to have another 8, it's every 6 weeks over 12months , I've had couple of little niggles, itchy skin but nothing that makes me think it's owt bad , im really happy with how the first one went , I was very apprehensive about having it but talking on here helped me alot , it pointed me in the right direction,  I hope this helps and get ya head in the game and smash it pal you got this . Shep47

  • Hey!  Be kind to yourself.   A RCC diagnosis is always going to be a shock.  Your age is a benefit here.  Stats are just stats and not specific to you or how you may respond to the treatment.  I know it's a toughee but try and stay calm and let protocol take its course.   It's 65% that it won't re-occur!

  • Thanks for the message and kind words Mmum - much appreciated Thumbsup