Hi all sorry to rain on your parade a little   l had a partial nephrectomy 11 years ago   the opp went well   back at work in 4 weeks it was a papillary cell carcinoma,  found by accident, flank pain on left side , ultrasound and ct scan diagnosed it . Over the next 11 years sometimes get the flank pain but just before Christmas last year went back to see my GP with the flank pain said it could be scar tissue but not sure so had an ultrasound   they found a nodule at the nephrectomy site still unsure was sent for a ct scan no reply from my consultant so according to him no reply is good news. So I think that us partial nephrectomy people will perhaps have to put up with a little discomfort every now and then as long as we get chance to grow old with our children and grandchildren 

I hope u are fine now, so that means i got to bear with this pain for long years,almost 2 yrs now,and not much better.

I am a little late to this party as I note that this thread started in December 2018.

However, I found the information and comments of great interest and of considerable comfort as I have recently had a laparoscopic radical nephrectomy (robotic left side kidney removal) due to a disappointingly late diagnosed transitional cell carcinoma (TCC) and felt that sharing my experience with others may similarly be helpful.

It is 10 weeks today since that I had my operation. The first few days were pretty horrible, with considerable pain from the op site but also from what they refer to as ‘gas pain’ which is where they inflate the abdominal cavity. Apparently the diaphragm get pushed up and the pain is spread up to the tops of the shoulders as they share the same nerve roots. This pain did pass after 48 hours but was pretty horrible during that time.

I was discharged after 3 days with wound dressings and a catheter as I was retaining urine. This stayed in for 2 weeks during which time I could do virtually nothing except watch TV, read and sleep.

The wound sites consisted of 4 small (bullet hole) type and one 100mm long lateral wound for the actual kidney removal. Dressings were changed very gingerly at home after 3 days and came off after 7 days.

I had quite considerable pain for 4 weeks which I was endeavouring to control with copious amounts of paracetamol and nurofen with limited success. I was told by my consultant that I should expect to make a complete recovery in about 6 weeks but for me at least, this proved very optimistic and I am now 10 weeks in and still have quite a bit of discomfort.

There is still a constant feeling of bruising, sometimes a stinging or burning sensation and occasionally a sudden stabbing. All a function of severed nerves I believe. The surface of my skin around the area was hyper sensitive and even to have a single sheet touching me at night was too much. The top of my thigh in my groin that side is numb for the same reason.

In discussion with my nurse specialist, I was comforted to hear that this is all quite normal and to be expected and the 6 weeks is more of a clinical recover time, not to be confused with recovery to normality and total comfort which may take 6 months or more.    

Having only just found the site I feel that my post may be somewhat historic but it may prepare some!! Nov 2017 and I was rushed to A&E after passing what seemed to be a gallon of blood. I was admitted that day and the following day was found to have a mass on my right kidney.Scan confirmed ultrasound and at the end of the month28thto be precise my right kidney was removed via a radical incision,the mass was too bug for keyhole. As well as that I got what tested as Renal Cell carcinoma, I also have a number of heart problems, for which Iwas and am under treatment, Diabetes, insulin controlled, Cluster headaches and a couple of other problems. But, the surgery went ahead and I then spent a horrendous 6 months, infections, being overdosed on pain killers and the wound refusing to heal due to the diabetes.
6 months later I was told I had nodules on the lungs, treatment but no cure!!
Happy days. 3 years worth of Chemo I have now been told that the last scan found no trace of the nodules, but there's always the cellular level. 
you might be asking what's this got to do with pain. Few weeks ago I began getting sharp, stinging pains centered above the op site. Following a recent round of golf I find Ihave to be careful how I walk, twist etc as it is extremely painful. Waiting a week or so to see if it's just something I pulled, failing which it's back to the good old NHS 'for an explanation,cure/ treatment.'

Still fighting, looking forward and when I can, living for the moment. 

Thank you for your post. I thought I was going mad. 
I had a radical right nephroureterectomy 10 days ago. The pain has been horrific. My experience mirrors yours so far. I too have a catheter to allow the bladder to heal and to have chemo into the bladder next week. 
The literature I have been given suggests I should be bouncing back soon seems massively optimistic. 
I feel reassured that this is 'normal'   

Hi Totty1,

I'm now 17 months down the road and still have the occasional twinge but generally fully recovered. In my case I reckon it took best part of a year to get over the surgery but to be frank, the chemo really knocked me sideways. I was supposed to have 4 cycles of 2weeks on and one off, so in total 8 sessions over 12 weeks but it was stopped after 3 cycles as my haemaglobin level had dropped severely and my energy levels were on the floor. I could barely walk up a single flight of stairs without stopping 3 times. Everyone is different however and hopefully you'll not suffer so much. Having said that I'd definitely have the chemo should I ever need it again. I'm now more or less fully recovered but it has been a long road tbh. I'm being CT scanned every 6 months and my prognosis is very good with no signs of recurrence.

I wish you and of course all with similar issues, all the luck and best wishes

Hi Totty1,

I'm now 17 months down the road and still have the occasional twinge but generally fully recovered. In my case I reckon it took best part of a year to get over the surgery but to be frank, the chemo really knocked me sideways. I was supposed to have 4 cycles of 2weeks on and one off, so in total 8 sessions over 12 weeks but it was stopped after 3 cycles as my haemaglobin level had dropped severely and my energy levels were on the floor. I could barely walk up a single flight of stairs without stopping 3 times. Everyone is different however and hopefully you'll not suffer so much. Having said that I'd definitely have the chemo should I ever need it again. I'm now more or less fully recovered but it has been a long road tbh. I'm being CT scanned every 6 months and my prognosis is very good with no signs of recurrence.

I wish you and of course all with similar issues, all the luck and best wishes

Thank you for your response. I felt significantly reassured after reading your post that my recovery from surgery is on the right path. You have now reassured me further. 
Thank you. 

I'm glad you are recovering ive been 4 years still have a slight pain now and then but it's the mental state I had problems with they said it was survives quilt. But it makes you a lot stronger in the end chin up always think positive. 

Dear Elvisfan

thank you for your response and kindness. I worry about survivor's guilt although I'm not yet clear they are very optimistic. My sister,  52, died 10 years ago of ovarian cancer. She did advise me that she would haunt me if I didn't get on with my life and have a good time. She would as well

Totty

Dear Elvisfan,

I am a female Johnny Cash fan! Anyway, had partial nephrectomy left kidney four weeks ago. Was beginning to think recovery slowish but now reassured by these posts. My days vary. Sometimes walk well (but no more than a mile). Others, feel a bit lightheaded, sore still.

My tummy is still pretty big but a relief after gas subsides. I am not looking forward to colonoscopy in two weeks time after acute attack of diverticulitis (bowel cancer, **** I hope not) but think I will just handle it, as pain from laparoscomy has reduced considerably. Like everyone else on here, it is over the kidney site that it is worse and where I have dissolvable stiches. Don't get much help across departments, eg surely there must be a rule as to when another intervention desirable, or not?

I don't get the result of kidney biopsy until 1 November, that is, 9 weeks after the procedure. It is such a long time to wait (They say it has to do with a lack of histologists: Brexit too). 

Anyway, take courage. Heaven knows what 'clinical recovery' actually means!!

sx

Hi Totty1 & all,

I had a partial right nephrectomy via keyhole surgery in June . Stage 2 RCC, prognosis good following surgery but have had ongoing discomfort down my right side, feeling of tightness in the wound area, occassional stabbing pain but more usually "stinging nettle" type sensation. I'm so glad that I've found this site & now realise ongoing discomfort is common place & fingers crossed will reduce over time.....considering the alternative if hadn't had surgery, a little soreness is a small price to pay.

Good luck to all with recovery.

Hi I was having a mopey sort of a day. But then I saw your post and knowing that this lovely bunch of people are supporting each other has made me teary and happier. Thank you
Totty

Hi Totty1,

Glad I brightened up your day:wink:

This group seems like a needed lifeline/resource for so many people that have experienced similar events. So nice to see so many people doing well.

Have a fab day