Secondary lung cancer

Hi Bazzaer, Sorry no one seems to have replied to you as of yet.  I'm just a little way behind you in as much as i am having my right kidney removed on thursday (day after tomorrow). I have a 9cm tumour on it.

Sory you're left in limbo. During my first urology appt i was told of a bladder tumour and a tumour on kidney. I was also givena card with the number of a specialist oncology nurse and told to call her for more info on what was happening to me. Was you given a card too ?

There are a team of oncology nurses that will help you i think. They know so much and even if it isn't someone assigned to you they will, i'm sure, find out all they can for you.

Keep posting on here though Bazzer normally someone will respond with a bit of advice or experience to share.

Good luck....Del.

Hiyah Del, wow, you’re up for the big one, best of luck my friend, I can never praise the guys who operated on me enough, wasn’t so keen on the aftercare or the near total lack of it, I live alone, good to have someone to chase things up for you, I was assigned a cancer nurse but on the n.h.s. cancer care line I’ve had to wait up to a week for a reply phone call,  was actually in the toilet when that happened so I missed it, there was no booking time just am or pm, a second attempt a week later was cancelled without notifying me because I had a follow up appointment with an oncology consultant, that wasn’t so clever either because my hearings not so good lol, I’ve loud tinnitus as well, plus the line wasn’t that good, I kept talking over the consultant without realising it, I have been successful contacting the cancer care line but of late they are so busy, they’ve just got too much on, so now I’m on immunology I try to ask questions there , I’ve only just started that, what concerns me is that my cancers aggressive, should be having my 3 monthly ct scan now but that’s been moved on unti I’ve had 3 months of immunology, so it’ll be nearer 5 months since the last scan, all in all I just get up and live every day, I’m at a complete loss with where I’m at with this cancer, the cancer care line can’t really help me, they don’t know, I’ve no idea what rate this cancer can grow at.

Anyhow, I truly believe they saved my life last October, so every day since thens been a bonus, my thoughts and prayer are with you, just by chance last July 29th I urinated blood, otherwise I’d never have known, unlikely I’d be here now, lost my brother with same cancer 5 years ago, he was 7 years older than me, he found out too late, so we are fortunate, all the very best, barry

How frustrating that you can't seem to get the info you want.

Same as you i pee'd blood. At work on 4th feb this year. I've already had a 4cm tumour removed from my bladder.

Part of me still feels like there's been a mistake. I'm fine. People (neighbours and friends) ask me how i am and think i'm putting a brave face on when i say i'm fine. But i am. Perhaps a dull ache around my back. But that's about it.

Hope you find out all you want and need to now soon...Del.

I totally get where you are coming from with the 3 month wait.  We have to find an equilibrium approach and not to swing from the ecstatic to the disappointment and any emotion inbetween.  When I have "what if" thoughts, I remind myself to be pragmatic and that the 3 month schedule is not without scientific base.  I find "inconclusive" to be an easier result than a positive.  I try and disengage from the 3 month schedule.  It doesn't alter anything, it's just data.  At some point my immunotherapy is going to stop working, and then I will move on to level 2 treatment.  

You'll be on the best drugs for your cancer.  

Hi Brazzer,

So sorry to hear you cancer has spread to you lungs, the same thing happened to me a year and a half ago, I was put on immunity treatment and mine did actually shrink and went away, mine treatment stopped working after fifteen months and I have been put on another combination chemo treatment as mine spread to my liver, I do hope you get good results from the new treatment you have started, all the best Sandy

That’s interesting Del, I feel a fraud at times, it’s hard to judge the seriousness of this when there’s little to show for it, well apart from major surgery, although a few days back I took a tramadol for arthritis but also to perk me up and to ease fatigue and some depression , went out and dug some of the garden, that resulted in me fighting for breath for two days and basically physically shattered so I’m aware there’s limits now I could go

beyond but only for short periods, I feel something let me know unreservedly that it’s there 

Mmum, I’ll take your word for it, for me it is a near total unknown, it’s like waking up to my very own mortality, so many issues being thrashed out in my mind, reasoning with my life up until now and what it amounts to, whether to be positive, I’ll fight this thing, whether to have some form of acceptance, I live very much on my own, very few real friend, no living relatives now, had enough isolation with Covid then following on from major surgery, in a way it’s like a crisis crossroads now, feel so vulnerable now, before last September never known such a threat, have arthritis, loud tinnitus, but that’s backstage by this, came out of the blue, don’t seem to have a plan B

Sandra that initially sounds so good, sorry to hear about the liver issue, I’m very new on here, can’t really gage this thing, not panicking but I do feel very isolated, cancer care line , they were helpful, that’s when I could actually get someone, then I just left it, I need face to face, even today I had pre chemo appointment just after 8 am hospital, that took some getting there for that and the nurse taking it never showed up, telephone call later, I’m no good with these calls, I get so tired, can’t think, try to plan things, I’ve had more stress from the nhs than I’ve had with this cancer, macmillan have been brilliant

Hi Bojup,

Welcome to the kidney cancer community, you are in the right place, I am very lucky as the different hospitals I have been to have had Macmillan centres attached to them so I have been able to have face to face talks and also I have had therapy’s on site too, to help with my needs from worry and stress, I have been well looked after, I am under the Brighton cancer centre at the moment as it was between Portsmouth or Brighton that actually had the treatments I needed, the best part is that when I first went on infusion chemo they have a building for all the treatments so I was very lucky as like you I was so nervous about going but they explained everything and were very reassuring, I hope you have better treatment next time you attend your appointments, try to stay positive and look forward not back, they say onwards and upwards, I am sending my hugs and love to you Sandy