Translocation carcinoma

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Hello, first time poster here. I had a radical nephrectomy 2 months ago and got my histology results today. It turns out I have rare form of kidney tumour called a Translocation carcinoma. There have been very few studies due to it being quite rare so there is no standard grading system and the prognosis can be variable. It's more common in kids but tends to be more aggressive in adults (I'm 38). No treatment has been recommended at the moment but consultant advised I need to be monitored very closely for signs of recurrence.  I wondered if anyone else had been diagnosed with this type of tumour? Any words of wisdom about coping with the unknown prognosis but likely to be more aggressive than other forms of renal cancer? I would love to hear about others experiences! Thanks Gill Blush 

  • Hi Gill. I haven't heard of this, so can't help you with any direct experience but I hope someone on here might. You must be going through a lot of emotions right now. I don't know if it helps at all, but even though I have a more common type of cancer, there is an intermediate to high chance of recurrence so I'm having some immunotherapy treatments to help address that and scans every 3 months. So I feel very aware of the uncertain future.I imagine you feel something like that? I think in some respects, we all have an unknown prognosis, as even where there is data/statistics, there are so many variables and individual responses that no one really knows how things will turn out for them. I hope that makes sense?! It is hard to get a handle on and in all honesty, personally I grapple with the 'unknown' with varying degrees of success! How are you recovering from the surgery? Also what part of the country are you in?

  • Hi Starlady, Thanks so much for your reply, I appreciate it. What you've said really does make sense and I'm sure in time it will get easier to manage the fear of the unknown but at the moment thing are just a bit raw. I have 3 young girls so the thought of not being here for them is what terrifies me the most. I need to try and stay positive though and generally I've been quite good at that but just felt a bit floored on Thursday with results. I've recovered well from surgery and physically pretty much back to normal. I'm in Kirriemuir, Scotland, sorry forgot to say! It sounds like you're being monitored closely and I really hope that and the immunotherapy keep you safe. Thanks again, Gill x