Hi everyone. Just a short intro on me and the situation I have found myself in.
In the last 3 months I have gone from noticing blood in my urine. Then learning that I have a 9cm tumor on my left kidney. Finding out within a month that I would be having keyhole surgery to remove my kidney. Then waking up from surgery and quite quickly noticing that it must be a bloody big key due to the 30cm wound starting at my bellybutton and heading around my side. Learning then I was blessed to have Horseshoe Kidney. To now learning that my cancer has become metastatic I think is the right word. Meaning it has already spread to my lungs and yesterday hearing the prognosis. And I thought I was doing it hard already. Thems the breaks I guess. Anyway thats me.
Some days you sit there think, well this has been a shit year. That one could just piss right off and I wouldn't miss that year at all. Not one bit.
So what is the prognosis? What is the plan?
And how are you?
Hi sch and thanks for reading and replying. My treatment is going to be immunotherapy. And just hoping for the best. Dr told me the cells look to be Rhabdoid something or other. And that though it is not spreading rapdly everywhere now. They are of that type. Well thats what I got from what he said. Less then five years was mentioned.
And me personally? I dont really know at the minute. I have swayed from tears welling up to feeling basically just pissed off.
Welcome to this horrible club filled with wonderful people.
Rhabdoid tumours are very rare and usually occur in children. The fact you are an adult puts you in good stead as you have strength to fight it. Don't pay attention to the 5 year survival rate the doctors tell you. I have metastatic kidney cancer of the clear cell type, with a 5 year survival rate of 8%: I'm now 7years passed diagnosis. Alot depends on your attitude, & the fact you're pissed off is a good thing. Turn that anger towards survival & you'll go a long way.
Immunotherapy has only been used for treating kidney cancer in Australia for the last few years. It works well for some, but it can aggravate any existing autoimmune conditions you may have. I was on Nivolumab for 4 months but it did nothing for me, except leave my knees aching terribly, because I suffer from arthritis. But I'm plodding along with eveything just fine at the moment. I hope you get good results with it.
Best of luck
That's bloody unpleasant news! I'm so sorry. I recently saw a documentary on immunotherapy and it looks wonderful plus not invasive, small amount of long term side effects as compared to chemotherapy or radiotherapy. Results were looking quite good too. As SCH said don't pay any attention to survival rates as your prognosis is your own and depends greatly on a multitude of factors. We have amazing doctors, surgeons, oncologists, radiotherapists, nurses and everyone else involved in this ever growing sector of the health community. You will get the very best of care whether you're rich or poor and I thank Australia every day because we have universal health care cover.
Good luck with everything you're going through. It's a terribly difficult journey but again as SCH said, being pissed off will make you fight even harder to survive. Please let us know what's happening and how you are throughout this time.
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