KC and its treatment & prognosis

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I’ve been on Macmillan for a few years now, but apart from initial contact with the nurses, not been in touch. 
My story? About 2010 I was hit with a triple whammy of skin cancer, prostate cancer and then kidney cancer. 
Well, the skin thing is a continuing saga, they dealt with KC first by a partial nephrectomy, leaving me 60% of my right kidney, then dealt with the prostate - first hormone implants then radical radiotherapy. This appears to have been totally successful! All was fine with the KC until 2 1/2 years ago when it raised its ugly head again. I was put on ‘watch & wait’ regime (though it was never explained what they were watching or waiting for!) and so after 2y 3m they decide (have I waited long enough?) that I should start immunotherapy with Pazopanib (where do they get these names?). After 6 weeks on this, and no real problems apart from exhaustion, I started passing blood. Is this a reaction to the Pazopanib? I don’t know. No one says. After a week in hospital I came out with a nephrostomy bag, and severe pain in my right kidney. That has gradually subdued to a dull ache but I’m taking in my stride. Resting loads (can’t do much more as I’m tired all the time) eating reasonably well, though my sense of taste is shot,The good news is I’ve stopped passing blood (is this normal?) and this last day or so I’ve not far of stopped passing urine into this bag (is this normal?) - I’m told I’ve got this drain fit 3 months! If so why? Why 3 months?! I realise removing it is not an easy or simple operation - but 3 months plus?!!! 
The general hospital I’ve been in weren’t forthcoming with answers, I’m assuming they don’t want to say the wrong thing in case the oncologist has other views - but! The oncologist isn’t there for me to ask! Any answer would be better than none! 
So, I’m back at home with my bag, waiting for an appointment with the oncology team (later this week as it happens) when I might get a better picture. My oncologist is top of her profession I’m told, but seems to lack a 1:1 dialogue ability with her patients, she’s not very forthcoming. Anyone else have this problem? 
Personally speaking, when KC returned 2 1/2 y ago, I was quite depressed, taking it as a terminal illness. No one has told me any different. Am I just in the progression stages (& where am I on that scale?) of this illness? What else can I expect? I was told by the general hospital doc that the best option would now be to remove the offending kidney - something that was not considered feasible when it first re-appeared because of other health issues. So until I get to see the oncology team, I’m in no man’s land. The decision about my case was to be discussed last Wednesday at their multidisciplinary management meeting - perhaps they’ll tell me the outcome of that when I see the oncology team later this week? Who knows! 

There’s a number of questions in this text, of which I’d like answers - sorry it’s such a garbled message. 

  • Wow. You have had a really challenging journey with your health: I'm so sorry for you and really hope things pick up. My own exerperince with kidney cancer is quite different to yours, so I'm afraid I can't answer your questions. But what strikes me is that they are all very reasonable questions, and ones that your medical team should be capable of addressing.

    I find that it is difficult to contact the consultants at my hospital, but the nurse (CNS) is always very good at taking my questions, directing them to the correct people, and coming back with the answers. So do you have a CNS? if not, I'd suggest you ask for one when you go back to the hospital this week. And make sure you leave with the an email address for the CNS: I find it almost impossible to reach her via telephone (she is very busy). But on email, my CNS is brilliant!

    I'd also suggest you take a little notebook into the medical appointments. Before seeing the Doctor, write down all your questions, and during the meetings, make a note of the answers I find this really helpful. The simple fact is that we all go into these meetings in emotional turmoil, and it is all too easy to forget what we wanted to ask. My notebook has been invaluable. Also, I have noticed that the Doctors take a bit more care in their answers if they see you writing down what they say. In the first meeting, I thought it might feel a little confrontational to do this, so I was upfront, told them that I was all over the place emotionally, so needed to write it down otherwise I'd forget, and the Doctors didn't mind at all.

    Again, sorry I can't gve yu the answers you need, but hopefully this will help y ou get the answers out of the medics.

    Best of luck with everything.