Hi harleyoliver19, 

I can imagine it must have been a bit of a shock to you to be told you were having a radical nephrectomy when you expected it to be a partial one. We have information on our website on the radical nephrectomy which you can read here. I hope it will be helpful to you and that you will get to talk to others who have had a radical nephrectomy and that they will be along shortly to share their story with you. Others on our forum have had this procedure before as for example [@Freddie123]‍ who mentioned on this thread from January that he was going to have a radical nephrectomy. 

Hopefully coming here and talking to others who have been in a similar situation before will help you prepare for the coming days. I hope the meeting with the surgeon goes well and that you find out soon what your surgery date is. 

If you wanted to talk to one of our nurses, you can ring them on this free number 0808 800 4040 - their line is open Monday to Friday from 9am to 5pm. 

I hope everything goes well and that things get back to normal for you soon. 

Best wishes, 

Lucie, Cancer Chat Moderator

Thanks Lucie

advice much appreciated i am a firm beleiver in being fully informed i researching in my case the more knowledge and informed i get the less panicy i feel.

Am an ex nurse and have worked in a lot of fields so in a way im lucky, this chat room is excellent i can release and talk about my concerns etc without worrying family or friends, they have enough on their plate already.

was planing a trip abroad before my operation but even that has now been halted oh well onward and upward

Hi Harley

My name is Claire. Firstly I don't know what to say about your story. It sounds like you've had a rough time. I don't know how rare having two cancers at the same time is but I was shocked when I read about it.

I was tested during November and told I may have a tumour on my kidney. In December it was confirmed - stage T3a. I was shocked and I was told I would have a radical nephrectomy on the 9th January. The Urology Consultant said that due to the large size of the tumour (15cm) and a large cyst (10cm), that laparoscopic surgery wasn't suitable and that it had to be open surgery. 

It's been 10 weeks and 2 days since the surgery. I've had some good days and some bad days. But I'm sure that the chemo that you've had to endure was much worse than my bad days. The Urology Consultant is very confident that they have got all the cancer, although it had spread into fatty tissue around the kidney, it had not spread to the lymph nodes. The plan is to monitor me with regular CT scans. I returned to work (initially part-time) last Monday (16th March) but with Covid-19 I'm not sure that was the best idea.

I too read everything I could to be less panicked. People kept telling me to stop consulting 'Dr. Google', but I definitely think it has been better being informed.

Have you got a date for your surgery yet? Let me know when and I will be thinking about you and your family. Keep strong and be safe during these surreal times.
C x

(Sorry about the long post) 

Hi Claire

thank you for letting me know how you are recovering and wishing you a full speedy recovery.

Have not heard anything presume because of covid-19 im staying posative and keeping well have been isolating myself etc for a while due to the surgury and chemo previously.

Don't want to appear selfish but want this operation to be done ASAP before hospitals are overwhelmed i have underlying conditions and every surgury i have a HDU bed must be available never had come close to using one so think this will be less likely to be available as time goes on.

Staying postative as always

Hi Harley

I was just wondering how things are, have you had the surgery yet? If you have, how are you progressing?

I'm having more good days now but still some issues with nerve damage due to the size of the incision/scar (32cm). I had a scan in April with no sign of the cancer spreading, so that's all good. 

C x

Hi Freddie

Actualy having my operation nxt monday 22nd June sorry to hear you are struggling. Because of Covid op was put on hold also have some serious medical issues i know despite what i tell them there putting me in a HDU (high dependancy unit) post op this op is in a differnet hospital than i have been in so there a bit concerned about my recovery and breathing.

Can not beleive this time last year i was waiting for mastectomy been a horrible year finger crossed comming to the end and can get back to my care free life

Hi Harley 

Good luck for Monday. The ward I was on the staff were great. I felt like I was in very good hands. My thoughts will be with you on Monday. 

My only advice is for after the operation - do your best to be as active as you can. I know it won't be easy but I think I didn't try enough to be active in the weeks following and that is why I am still having issues. 

C x

Hi All

Have not been on for a while the radical nephrectomy was performed on 22nd June things didnt go quite to plan awoke in horrific pain epidural failed allergic to opioids so spent the nxt 36 hrs vomiting while differnt PCA's were tried eventualy just told the to stop stick with IV paracetamol and 2.mg oxy oral got out on 4th day came home i am a strong person and usualy get little or no pain was done keyhole but the had to make a larger cut to get the kidney out that is about 6-7 inches long noticed straight away numb on left hip, the severe skin pain and numbness due to nerve damage surgical pain 2/10 wounds completely healed. got histology result not stage or grade 1 it's a stage 3 shocked at that but it had invaded fat cells so thats good only change to me is scans every 6 months rather than 12. Spent almost 4 weeks upstairs nausous and in pain nerve pain slowly getting better still numb around hip not bothered about that. just passed my 12 month anniversry of mastectomy that upset me more than i had imagined but now about90% back to normal still sore and fatigued but feeling better everyday. oh on the plus side lost a stone in 2 weeks LOL

Hi Harley

I'm sorry to hear you've had a bad time. Hopefully your feeling better health-wise and the wounds are healing. I was allergic to the opioids too but I was given an anti sickness tablet that worked for me. The histology report was also a shock - mine was grade 4 and I was supposed to be having a follow-up CT scan every 3 months but (I think due to covid) it's messed up. So my next is in January which will be 10 months since my last one?

The nerve damage is still causing problems and I've been to see the consultant this week about it. He's not sure if it will ever fully recover and has suggested core strengthening exercises, etc. so I'm keeping my fingers crossed. I'm going to try and do my best to live with it and just get on with living life. 

All the best

C x

Hi Freddie

sorry to hear about the continued problems i was lucky still numb over the left hip but nerve pain almost gone i have my enrgy back my hair is back almost to normal just want to get on with life have always been a live for the day kinda person more so now just had my yearly mamogram done at another hospital as my breast unit has closed due to covid. Results in about a month. Have finally planned my next holiday of to Turkey in a few weeks treating my sister. Hate what the covid is doing to people from every aspect the fear that people have i live up north and as a ex nurse of 28yrs the fear is harming more than the covid i feel for people not being able to access healthcare and tests not being done. The last yr when i look back has been terrible just so releived it didnt happen this yr. If my kidney removal had been delayed it would have been a dissaster mine went from grade 1 to 3 in a matter of 3 weeks already speading fast. I feel for anyone who has had test posponed like yourself or just a wait and see aproach, i am grateful my surgeon got me in fast after several test.

I do hope you get things sorted i was so down and misseable with the nerve pain

Good luck x