Very new to this site but thought I would give it a try as I am little lost at the moment. I have recently been diagnosed with Translocation Associated Renal Cell Carcinoma with a high Nuclear and stage 4. I have had half my right kidney removed and the biopsy done to lead me to the point of knowing what type of cancer I have is extremely rare (only 50-70 known cases have been reported in the world). I had a PET scan a week ago and seen an Oncologist for the first time today. Unfortunately I left the Oncologist feeling very disheartened and angry that they couldnt give me any more information about this. Yes I know it is very rare but I thought they may have done some research into this prior to our meeting. I felt as though they put it into the too hard basket and basically felt as if they wanted me to go sit in a corner and die quietly (I know this wouldnt be the case but just felt angry)
They have agreed that I still have active cancer cells in my kidney but a mass the size of a football around the surgical site, that showed from the PET scan was inconclusive.. They are not sure if the this area is inflamation, infection or cancer. Needless to say.. I am quite anxious to find which it is.
All we where told was that there isnt anything they can do as they dont know what they are dealing with and to go home and they would be in contact.
I do not want this to be a angry post/rant, I am just interested to here other peoples opinions.
Hi there, I just joined this forum yesterday after my younger son was recently diagnosed with Stage 4 renal cancer. I talked to an old friend whose husband has been fighting kidney cancer for over 2 years. Some comfort I was given includes: there are many immuno therapies to use against the disease. There are many good doctors too. Secondly, if they don't know much about your specific problem then you have to be proactive and read as much as you can. You'll find a lot of info online, some good some not, and the more you investigate, the better because when the doctor asks you for agreement to use a certain plan, you are better prepared. My philosphy - if it's any use - comes from an old writer who said "to live better, think of each day as a life in itself" because then it can seem longer and richer. Material things lose their value straight away. The website https://oncologynews.com.au has an article on "Research review underscores progress in treating kidney cancer..." - be proactive, there are others out there feeling just like you, dear.
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