Kidney cancer

A place for people affected by kidney cancer to support one another, ask questions, and share their experiences.

Waiting for radical nephrectomy

Ginge36
Posted by

Hi all, 

I'm waiting for my appointment to have a radical nephrectomy. It's been nearly 4 weeks since my consultant informed me I would need surgery due to kidney cancer and I've still not received a date for surgery. I've tried ringing my consultants medical secretary but still no date! Everything so far has been so quick (only referred for investigation into persistent blood in my urine end of July 2019) which I think is now adding to my frustration. I feel like I'm going mad waiting knowing I have cancer, I just need it gone. I know renal cancers are slow growing but I'm so anxious thinking the longer I still have the kidney it may spread. CT scan has confirmed it hasn't spread but so anxious at the minute. I'm trying to carry on as normal but it's so hard. How long has everyone else had to wait for surgery?? I have two young boys 5&8 years old but I think they are picking up on my anxiety now. My GP has signposted to this group

Mary x

lolly65
Posted by

Hello

The waiting is the worse part!, I waited eight weeks and it felt like the longest eight weeks of my life, but once you have a date it gets a little bit easier, I’m now three years NED, feel free to ask any questions.

Lisa

buttercup01
Posted by

Hi, yes I agree waiting is the pits. I was told I'd need a nephrectomy in the June n had to wait till the  Sept for my op as the surgeon was on holiday. 

It was well worth the wait  tho as he did a good job.

Despite having several mets, which have been treated by various means over the years, I'm still here 14 years later

There are also others in this group who are several years post-op.

Sue

Fear of the unknown is the worst thing. Once we know what we're facing, we find the strength to deal with it.
Joncol
Posted by
 
Yes waiting is definitely the worst. Like you I imagined the tumour growing and spreading and if I could have cut it out self I would have done! I found when I did have a date for the operation four weeks after diagnosis I felt back in control. I’m a lot older than you but I got myself as fit as I could. It felt that I was being proactive with my health. You will get through it. The operation is major but doable. Good luck
Jane
Ethelmay
Posted by

Hi ginge36. I first contacted my gp in January because I knew I didn't feel right at Xmas. Had meds for a month or two for heartburn and rumbly tum and niggles..then an ultra sound appt which showed a large kidney cyst on left kidney. Ct scans followed . I had appointments at my local hosp I was told in June that Id have to lose the kidney and spleen and was refered to another hospital better equipped to deal with it. I had an appt with the surgeon there 2 weeks ago. I had a letter on Saturday to say I'm now on his waiting list. I do understand your anxiety about waiting. The waiting is absolutely the very worst part, as Joncol and everyone else here says. Ive never known anxiety quite like this and personally Im struggling to function and keep up appearances everyday. I too imagined everything growing while waiting and take heart that the guys here have said kidney tumour is a slow grower. At my last scan it hadn't spread, fingers crossed it stays that way until the op. Lots of love to you, do try not to worry xx

Love and hugs

Ethelmay x
autumn19
Posted by

Hi 

we’re having to wait a month for my father’s operation, although he was first referred to the hospital in mid July. I did mention nhs guidelines which suggest about 62 days from referral to treatment but the consultant just explained they were working in a stretched system.

they should have a team that discuss cases & lists regularly so may be worth checking with the hospital how often they review your case so you know when to chase.

we were told we had hear within the week as to the expected date so I chased towards the end of the week & was given a pre op assessment date only.

they said we’d have to wait for the outcome of that before being given a date for the op but I have to say the nurses and secretaries at the hospital have been fantastic in listening to our concerns  & obtained a date. A month still seems to be a long time to wait when you don’t know what’s spreading but the advice to get into as healthy shape as possible seems to be the best that can be done in the meantime.

goodluck and hope you get a date soon! 

Jo300
Posted by

Hiya

I was diagnosed in May 2014 and had my op 17th July. Like Autumn19 I highlighted the 62 day guidelines - I don't think it hurts to let them know that you're educated as to what to expect. My pre op was just a week before my actual operation so once you're at that stage things are definitely rolling.

The slow growing thing is really worth holding on to. Average tumour growth is 0.8cm a year so if your wait was for example 8 weeks that's 1.2mm, barely the thickness of a thumbnail.

Hope you get some news soon!

Jo
x