Advice on kidney cancer

Hello @Sandy19 

At roughly this time last year, I was (literally!) about to have surgery for bladder cancer when my kidney cancer was discovered and they sent me home for the situation to be reassessed. 

From my experience, your grandad should expect a flurry of hospital appointments: with consultant and specialist nurse; for CT scans, perhaps MRI, to determine the exact position of the tumour and extent of the disease; then appointments to discuss the results and for a treatment plan to take shape. 

Surgery is the usual thing with kidney cancer. In my case it was clear right from the start that I would lose my whole right kidney. With smaller or more accessible tumours this may not be necessary. Similarly, because I had complicating factors, it was clear that I would have to have the big, open cut surgery. But otherwise laparoscopic, or keyhole, surgery is sufficient. Still a big thing, though. 

I was in hospital for for six days. That was an intense time. Back home, the first week or two might be quite grim; things get better quite quickly as you set small aims and targets. But it was a full three months before I was able to consider starting work again and then only on reduced hours. Even now, ten months after, I do get tired and have to recognise my physical limits and work within them, but in most respects I’m living normally again. 

I continue to have CT scans at three month intervals. Even before surgery, it was suspected that the kidney cancer had spread to my lungs, so we’re keeping an eye on that and I haven’t had to start on drug treatment yet. I also have check ups every six months for the bladder cancer but there’s no sign of that recurring at the moment. 

I won’t go into too much detail too early. There’s no getting away from it, it’ll be stressful, even frightening at times. But, when I look back at my last year, I prefer to see the many ways in which it has been thoroughly rewarding, that I could never have predicted or even imagined. So it will be difficult - but need not all be terrible. 

Your grandad is very lucky, for a start, to have such a caring granddaughter concerned about him. Feel free to ask me any questions you like, as his situation becomes clearer, and if I am able to answer, I will. All the very best to you, Lisa, 

-Mark 

Thank you so much for taking the time to message, I find it better at understand what others have gone though rather than reading the leaflets you get. In December he went in for stones so they thought, they did a scan on his bladder and shown was not emptying fully. So in January a biopsy was taken from the right side kidney tube at the bottom but they could not get to top to check so three weeks later he was back in with bleeding was told was scabs falling off from the biopsy. The following day a surgeon came to him and just came out with it saying it's a tumour that's before results was back. The following week he had a appointment and was told the results came back unclear but was back in for second biopsy that came back has cancer. Since December we have spent most the time in and out of a and e. We went to see surgeon yesterday who said it's not bladder cancer is kidney cancer and there is two tumours there. He gave him three options leave it or try radion or go for op, I have sat and spoke with grandad telling him I don't wanna see him give up to it and if second opinion did not work he could not go for operation after. I have seen my mum with cancer and she beat it my auntie has just been treated for breast cancer and so far there all clear so with all the love and help he can beat this. I am glad you have beat it and I hope you carry on beating it. I am so glad there is people out there I can talk to because I always phone my grandad everytime I get a message to help him understand he is doing the best thing 

Just to clarify, in case I inadvertently created a misleading impression, above. I haven’t beaten anything. I have recovered well from major surgery, which is a tremendous thing in itself, and am still doing so. But my cancer is incurable. It’s just that the metastases to the lung are quiet for the time being, or have been, and if they’re plotting something I’ll find out about it at the next CT scan (and then do whatever needs to be done). There’s always something to throw us wildly off balance, but being able to adjust quite quickly to the reality of the situation is, if you can do it, an enormous help in this. 

. . .

An update. This is probably not the right place to put it, but still. Forgive me. Last week the more lively tumour, growing where my right kidney used to be, was dealt with. Radiofrequency ablation, RFA, was a much bigger deal, and much more intense, than I was expecting. But anyway, I can put up with some unpleasantness if one of my tumours is going to be (what’s the right phrase to use here? ah yes...) blasted to smithereens !!

So  

-Mark 

Hi I am sorry I could have read wrong thinking you had beaten it. To say your going though all this you have taken time to message me and try and understand what's to expect. I have been sat with all the books and leafets they gave my grandad he don't want them because he is to scared and worried about it all. 

I don't wanna write anything wrong or say something that could sound bad. I went though the cancer with mum but was so different to grandads mums was skin cancer she had to loose her leg but never got into her lynth nodes, I am just don't wanna make my grandad go though all this because me and the family wanna give him the best life he has left at his age 

To  

Hi again, Lisa, it’s ok. 

I haven’t forgotten what it’s like to get a cancer diagnosis, whether for oneself or for someone close, you suddenly feel every mph that the earth is spinning, you’re thrown wildly off balance and it can take a while to find your feet again. 

Before my own situation came to light, we had a year of my wife’s breast cancer: the discovery, surgery, chemo, hair loss, radiotherapy. I suppose it prepared me, to some extent, for when my own trouble started. Anyway ... 

My wife’s way of dealing with all those booklets was not to read them. Well, she skimmed through them once and then put them away. My way, on the other hand, was to read everything carefully and several times. I wanted to know everything about my own illness, and still do, whatever it’s doing. 

At first, though, I did find it difficult to read threads here. While there was useful advice and information, many people’s stories, even the more uplifting ones, left me in tears, I was still too raw. But going through major surgery and the different stages of recovery from that, has taught me a huge amount about life and about myself and, genuinely, my cancer ogre doesn’t frighten me any more. (So don’t worry about writing the wrong thing, as far as I’m concerned.)  

How old is your grandad? And, aside from this, what is his general state of health? Is he fit enough to go through surgery? Which treatment option do his doctors seem to be steering him towards, or is it still too early in the process to know? 

I’m not being nosey, and there’s no need to answer any of these, they’re just questions that came to my mind while reading what you’d written. In my own case, I found that once I knew exactly what I was up against and a treatment plan was taking shape, then I had real things to deal with and the chaotic swirl of imagined fears receded. 

I know, it’s difficult. When a partner or family member gets ill you want to protect them. But no matter how much you would wish to take their suffering away from them, it’s not in your power to do so. They have to go through it themselves and sometimes we can only be there for them when they need us, or give them some space when they need that. 

All the best to you 

-Mark 

Thank you Mark for the message back, it sounds like life has thrown a lot at you and your wife, it's hard one person haven all this but for u both I can't imagine what it's like, 

 When my mum was told she had cancer it was just a shock because you always think the worse, we nearly lost her at one point due to drs making a mess. Since then I have always given to money to anything to do with cancer. 

My grandad is 83 but to look at him he don't look his age he is fit and no other health problems. They have not suggested which is best they gave us three options and we had to pick which we thought was best. I did say to grandad I don't want to make you do anything you don't want to but I said I would rather you be in less pain for what you have left in life and enjoy it. Today I have been on phone talking to Macmillan nurse because he has another bleed they said to get him back to hospital if he is still passing blood. But he is not happy it's hours in a and e before they even take him to ward to have it flushed though. Do you think I have chosen best option for him in your honest opinion? I have kids but if I have to spend days hours in hospital with him I will just to give him good quality of life with out the pain. I have sat and read everything today made lots of notes and questions to ask.

Told my grandad about you sending messages and how much you have helped me understand stuff I can't thank you enough for this