Just thought I’d pop a message on here. I’m almost 7 weeks post surgery for my open nephrectomy and tumour removal.
It was already a Grade 2b tumour so Tomorrow is the day I go to see my consultant and get the results of my lymph nodes and stage of tumour.
Feeling a little in denial at the moment as there’s no sense in dwelling on the ‘what ifs’ - but wondering if I should prepare myself a little ? Any advice out there for people who’ve been at this stage before ?
Hi, once u know what stage its at then u can start planning. No pont in scaring yourself sillly with what ifs Good idea to take someone with u to make notes of things said/answers to questions etc
Yes, been there, got the t shirt . Have been stage 4 for years,, but still here n waiting for my routine scan results lol. Good luck for tomorrow x
Thank you so much. Think you’re incredible with your approach to dealing with it, very pragmatic and I admire you so much. Want to follow the same approach. Will let you know how it goes tomorrow x x ️
Good luck for tomorrow! Will keep fingers crossed for positive news.
Thank you Jo.
Im in bed already absolutely shattered ! My little 17 month old has run me ragged today! Enjoying lying flat on my back.
Please do x
Hi Beenie how did you get on? Hopefully as well as possible xx
Hi there Daddiosdaughter
Sorry for the delay in posting !
So.... my consultant sat us down, and told us that I have a Chromophobe RCC, a very rare subtype of cancer affecting around 5% of the whole kidney cancers out there.
They took 15 lymph nodes, and it hasn’t spread into any of them, they tumour was originally predicted as 13cm but was found to be 10cm and they’ve told me that it was completely contained to my kidney. So a lot of positive news. He told me that it is a lesser aggressive form of kidney cancer in comparison to a ‘typical’ RCC, and he would write to me to let me know how often he would need to scan me.
Its been a week since the results and I went back to work yesterday ! I’m only working a four hour day once a week for now, and 8 weeks post surgery I’m really proud of that, I don’t think I could do anymore as I have a physical job where I’m on my feet all the time.
I wasn’t prepared for the mixed emotions I felt returning to work. I was quite tearful, and a lot less happy and relieved to be back than I thought I would be. I found it all quite overwhelming and I’m emotionally exhausted and very tired today. I just felt weird pretending that I felt normal, and behave normally at work, when I feel far from normal and I also don’t feel like the same person I was ! All very strange...
Thank goodness my little boy is having a HUGE nap today ! Bless him x x
It's good to know Chromophobe is a lesser aggressive form of kidney cancer, especially as my oncologist referred to regular RCC as ' indolent' lol.
Well mine was indolent. It took 23 years to spread.
What does ‘indolent’ mean?
Basically lazy ( like me) lol
Lol.... oh! Well, lazy is good in that respect then? I think...
Lazy or not Beenie i think that's a great result, well done xx
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