Into Week 7

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Hello there. Just a quick hello and summary: Got diagnosed end Jan for Papillary Renal Stage 2 Kidney Cancer. Had operation March 12th and had half LH kidney removed. Saw consultant this Thurs where he said histology has shown it to be higher grade more aggressive Grade 3 plus T3 in depth. This means not off the hook so to speak yet and have been referred to new consultant to manage pill treatment to prevent reoccurrence. Bit of a shock but trying not to get upset over something I have no control over. Tbh only just starting to mentally work through it all. Friend took me to the Horizon centre in Brighton recently and I was blown away by what Macmillan offer. Helped out in their community allotment the other week which was great. Anyway, that's all for now....

  • Hello and Welcome!  Papillary not so common on here - a couple of people have posted looking for "friends" so I am sure they will be delighted to say hello in due course.   But we are a friendly bunch and there's always someone around who's been through what you are going through with an angle to share.   Hope you are recovering OK after your op.  Adjuvant treatment is quite new for kidney cancer I think!  New options being developed all the time.  

  • Hello - hope you are getting over the op ok. It is disappointing to be told that more treatment is recommended and, as you say, it is a tough one at times to deal with mentally/emotionally. It is for sure an ongoing thing. You try to be upbeat, as much if not more for others than yourself but  the uncertainty is hard. Do you live in the Brighton area and where are you being treated?

  • Thanks so much for this, very kind

  • Yes I live in Brighton and had operation at Princess Royal Haywards Heath as it was robotic. Thanks for your reply - yes I've been thinking about how to relate all this to others recently - I just find it hard to gauge when people ask questions how much I should tell them, I mean - do they need to know whole story, are they just asking generally how you are or will it bring them down if I hit them with the Cancer word, etc. Anyway thanks

  • So true about what to tell people. For me, how much detail I give depends on who it is, how well I know them etc. People are generally shocked when I tell them I had a kidney removed and why. I don't go into detail too much about the immunotherapy treatment and why I'm having it, as not many people have heard of it and also don't know much about different grades/types of cancer and all the implications. Like you say, they probably don't want to hear the worst case scenarios! So I tend to say 'I feel well at the moment thank you'.

  • Like that - I think I'll say that from now on. Thanks

  • Hi I had mine removed at Prh as well but had to have mine cut open & not keyhole & had several infections so had it opened up again . Has to heal on its own with hole that goes into cavity. Its hard what u tell people as you end up saying it a million times . Staff are amazing . It takes longer than we think to get better especially if you think what has to be done on the inside . 

    Take care everyone & try to stay positive. 

  • I just find it hard to gauge when people ask questions how much I should tell them

    Oh!  There's a discussion in there :-o.  Everyone is different and no one size fits all.  For me, the information isn't public knowedge. I've told close family, 2 friends and 3 managers at work when diagnosed.  But I'm leaving that employer mid May.  I didn't want any involuntary reminders of my situation or let the cancer define me.  And I wanted to maintain my privacy.  I don't see myself as a cancer warrior (educator) or pioneer!  I'm happy to say I've achieved my objective.  It's tricky - you can't untell someone if they behave in a way that aggrieves you.  On the other side of the coin, others like a bit of empathy and support.  

  • Had mine out at prh and I thought they were all fantastic. Surgeon was AA. Amazing. 

  • Yes I thought so too