Kidney Cancer post surgery pain

Cancer
1

I am just over 12 months post kidney cancer surgery. I was diagnosed following sudden pain and hemorrhage and was rushed into hospital needing embolisation after which both kidney and tumor were removed. Prior to this I had no health problems and suffered no pain. After surgery I had bad back pain that was dismissed at the time, I changed consultants and hospital due to poor after care. Since then the pain has persisted and is now accompanied by some right abdominal pain. I take gabapentin pain relief daily but there is no firm diagnosis of why the pain persists other than possible nerve damage. My GP has been excellent.

Is there anyone else suffering similar following nephrectomy? Debbie

2

Hi Debbie

I just joined group so this is my first blog.

I had a radical open surgery nephrectomy last Sept (2013) As you prior to a show of blood I had no symptoms, not even pain.

i had a long op and a blood trnsfusion and a 100mm tumor and kidney (left side removed along with adrenal gland an,I think,lymph node.

I developed an infection post op and now have an incisional hernia.

I get all sorts of weird pains and twinges from time to time but not all the time

I spoke to my  doctor and it does seem like nerve damage as they really have to cut through a large area of muscle etc and it damages the nerves. 

I only take parcetomol if pain gets annoying from time to time. I think we just have to put up with it though it does get you down from time to time. I also get tired suddenly during the day but this is normal living with one kidney. On a positive note at least we are here to experience the niggles (better than the alternative methinks). I wish you well and hope the above is of help. Regards  Steve

3

Hi Steve, thanks for your reply, sounds like you've had a rough time but I agree with your philosophy - having had no warning signs, it could've been so much worse. I have since been booked to see a orthopedic consultant and am awaiting an mri scan. Having signed myself off from the consultant surgeons clinic before 12 months, I went under the radar and therefore missed 12 month ct and subsequent clinics. I suppose therefore it's only to be expected although, like you having no prior symptoms, I find it difficult to accept that scans/clinics may be a way of life. Oh well, hopefully there will be little to report - I will keep my blog updated. I wish you well with your ongoing recovery and hope your pain continues to be manageable. thanks again, Debbie

4

Hi Debbie

Hope you are still clear and the pain you are suffering post op. is starting to subside or is at least controlled.

My kidney and cancer was removed in 2008 I won't fill the page but I had no symptoms whatsoever and was initially misdiagnosed by the local consultant who said given the size there was no way I would look so well if it were cancer! The tumor was 19cm across when removed by the 2nd consultant and left a Mercedes shaped scar across my abdominal area. I too get pains similar to a stitch but in the lower area and I'm told is due to muscle/nerve damage. Luckily not constant. I went on a trial after surgery, but had to leave after 4 months due to side effects. I attended for CT scans every three months for first 4 years then six monthly. On 5th anniversary I was told I had secondary spread in the lungs. That was May 2012, I'm now on treatment but living a relatively normal life in that although I have retired early I couldn't sustain a job even part time I able to pace myself and enjoy life. However most people would have no idea I'm ill, I look well. Treatment is going well and I'm told when these tablets stop working there are others. No cure yet but I may still be here to trial one.

I'm not trying to frighten you but to demonstrate that you MUST keep up the regular checks. A pain but they're worth it. If I'd stopped the checks it would have only been found when I got symptoms. My only symptoms are side effects of the treatment at present and as that has halved the tumor sizes and are now holding them I feel very lucky. I've seen my daughter graduate uni and My first grandchild is due in 8 weeks. I can't imagine if it had not been found early.

Stick with it & Take care Jenny

5

Hi Jenny, thank you so much for your message, you've been on an awful journey and to remain as positive is wonderful and I admire your determination to keep 'upbeat'.

Since my original question I have had an appointment with an orthopedic consultant who recommended physiotherapy. This has helped tremendously as it was discovered that I had a significant tilt towards my surgery side. Whether from pain or the need to protect it has obviously caused more pain as I now have to exercise to correct this.

I am very driven to ensure I make a full recovery and so the physiotherapist signed me off last week after only 4 sessions as she was confident I will continue the exercises at home. In the meantime I started to wean myself off the painkillers as, having never taken tablets prior to my illness I didn't want to become dependant. The pain has definitely eased since physio started but is still there daily and I can of course feel it more without pain relief.

I will be 2 years post surgery in March and see only my family GP, who is marvellous. The hospital consultant signed me off after 12 months and my 12 month scan was missed as a result, thankfully my GP picked this up.

I was originally told I'd have 6 monthly ct scans for 2 years and thereafter for 5 more. Since being discharged I haven't had any although I was sent for an mri by my GP because of the back pain last year.

I saw my GP this morning to discuss progress as I haven't been for a few months.I have recurrent water infections which he said not to worry about too much. I told him I'd stopped the pain relief and he knows I'm sensible enough to take something if the pain becomes unbearable. Apart from that I have no other appointments unless I go myself. I did ask about scans and he has booked me in for an ultrasound scan and chest xray in June.

When asked, people are generally shocked when I say I don't have regular scans and hospital appointments. Post breast cancer my Mom went for 7 years and I think it's presumed that after cancer you are 'on the radar'.

I must admit I'm not unhappy that I don't have to make more hospital visits however, I suppose there are times I have that small, nagging doubt in my head. This is why I am keen to do everything I can to get rid of my back pain as it is a constant reminder - apart from being painful.

Like you I had no symptoms before kidney cancer and it was a complete shocker when I was rushed into hospital and told I had a tumor. I wrote about my experience and continued to blog after the event.

My only struggle is that between acknowleding I've had cancer and ignoring it - if that makes sense. If I could, I'd pretend it never happened and not mention it again but the continuing pain is like a finger poking me to remind me. Because of that I have to acknowledge that prevention is better than cure so will continue to do all I can to live a healthy and positive life.

Thanks again for your message, you are a real inspiration.

Debbie

Emis Moderator comment: I have removed the link as it was to a site unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

http://patient.uservoice.com/knowledgebase/articles/398316-adding-links-to-posts

http://patient.uservoice.com/knowledgebase/articles/398331-private-messages

6

Hello, new on this site so apolgies if this is covered elsewhere.

I had my left kidney removed 12 months ago but was right as rain within 6-8 weeks. So much so that I probably got complacent and did too much. Being a keen cyclist I went back on my road bike and boy, did phantom kidney not like that!! I did 13 miles and it took 3 months for the aching to stop.

Fast forward six months and had got up to 20 miles on my Hybrid bike (sit up and beg sitting rather then the bent over road bike) but I blew an inner tube and went back to the road bike and did 20 miles.

Haven't been able to do anything since (2 months ago) and my whole left side hurts when turning over in bed, getting off the sofa etc. Saw my specialist as thought I might have given myself an incisional hernia and he dismissed this saying it's probably nerve damage and I should get the bike shop to look at the set up on my road bike !!!

Is it common for recovery to take so long??

Cheers

Nick

7

Hi Nick

Had my right kidney removed in 2008 and like you recovery was pretty quick.  However the pains that I get which are brought on by moving in a certain way or bending in a particular way whilst doing things are still the same as those which were put down to nerve damage when I asked for the cause back in 2008.

From information I gleened following nerve damage in a motorcycle accident in 1994, it takes a long long time for nerves to recover.

I don't know from your post whether your kidney was removed via your side/back or your stomach.  Mine was via the stomach so my pains are all in that area if I stretch too much.  Sorry I can't tell you they have gone away but at least as you learn what causes the pains like me you can avoid doing that activity or as you did adapt your position so as not to agravate them.

Take Care

Jenny

8

I have the same symptoms and my radical nephrectomy was over 18 months ago. I'm a patient at MD Anderson, just had my yearly checkup and I'm fine, but the pain is always on my left, especially when I breathe.

9

Hi all..

I hope all of you are doing fine. I would like to ask if anyone has the same issue I have and what I should do. I had left kidney cancer in 2012 and partially removed it together with an ovarian csyst. For 2 years, I had xray on lungs,sonar every 3 months and ct twice. It was ok, now I do sonar only though i should do xrays as well every 9 months. For more than 6 months I suffer from presistent left pain, I went to abodminal doctor after having sonar which was ok,he suggested that I may have cold or muscle pain or I have to check my colon which was ok then and prescribed pain killers which did nothing. Now besides this pain I think my colon is not ok and evey food i eat turns to load after eating it by 1 hour. Though i didn,'t change ny eating habits i have gained 10 kgms within few months. I'm afraid to undergo ct scan because i heard it may cause kidney failure when repeated. Have anyone the same issue?

10

I was diagnosed in Nov of 2015 and had surger in late Dec.  Partial nephrectomy on right side.  I have discomfort on my right side, mostly when I do moderately strenuous work or when I eat too much (strange combination).  It's the same type of discomfort.  Much like a soreness.  It's right below the abdomen.  Will go for my next scan in August. I've heard of nerve damage before.  That's possible.  Could be something else.  Guess I'll find out at my next dr's appointment. 

11

i also had a cancer tumor removed on my right kidney, they took part of the kidney to... that was in may. i have been in pain on the right side by ribs where they cut through, but  they are thinking nerve pain and say i have to watch,, i had to have a colonoscopy soon after due to my inners started to refuse to work properly it was terrible.  the scan i had done earlier showed nothing on the outside of colon or bowels and the colonoscopy showed nothing major either. they told me my system would be different for awhile due to the stress done to my body and the surgery.  i had to change eating and eat like mild food and cut out seeds of any kind,raw vegetables, onioons and anything spicey... i follow a similar diet for people with ibs and in the last two months im getting a bit normal.  i hope this helps a bit. 

12

I have the same problem, I had my left kidney removed on 6/1/2016. After a 4 days in ICU I started getting real sharp pains on my leg. I scream because it felt like 1,000 of stabbing on leg..they told at the hospital it was nothing. I was in the hospital for 7 weeks and I kept having those pains and all I heard was, that I'm here to recover from surgery. I would get mad at the nurses and doctors. Nobody listens to me

Then when I got out they send me to pain management. Which they were no help, they try to day I had to go back to my cancer doctor. He read the report and I had to go get tested again for cancer, this time in my spine and blood..after 4 months of them testing me. Their was no cancer! Now they don't know what it is..they said it's nerves. Plus if I didn't have it fix, that I might not walk again..still waiting to see what it is. Mean while i'm using a walker because it'd hard to walk more then 1-2 house distance. I still in pain, nothing is helping. I feel like nobody cares.

Thank you

13

Hi all

I'm 59 and had a radical nephrectomy 10 mo. ago in February 2016 after being diagnosed with RCC. Initial recovery was good and 6 mo. lung scan was clean. However, about 2 mo. after surgery, I started getting lower back pain and stiffness on both sides, along with occasional "phantom kidney" area twinge. I worked with a Pilates instructor to strengthen core, but back stiffness persists. Best advice: regular walking and not sitting for long periods. The walking seems to relax the muscles. I have no idea why this developed (never had back problems before). Hoping it eventually goes away.

14

I'm so glad I found you all! I was diagnosed with kidney cancer in November 2016, had a radical nephrectomy December 16. Like most of you I had no symptoms, no sign at all.

It was discovered on an MRI of my spine checking on a herniated disk I've had for years. I've healed up very well but, lately when I fall asleep on my left side I wake up in excruciating pain in my back in the area where the kidney was. It literally feels like I'm being torn in half! I have follow up testing this month with lung xrays and MRI of the abdomen. I'm not too worried as it was a low grade cancer but, aggressive. They didn't need to take the adrenal glad or lymph nodes. No chemo, radiation or dialysis. Thank goodness but, this pain is by far worse than the pain from the herniated disk in my low back. I was worried sick something had gone wrong. I'm so very thankful to have found this forum and know I'm not crazy!

Thank you all so much!

I hope all if you are doing good and on track to being healthy. This had to be the most painful surgery I've ever undergone. Please keep posting updates? It's so nice to not be alone with this. I'm happily married but, people don't understand until they've gone through this.

Have a wonderful weekend and again, thank you!

Nadine

15

Hey dora im having same pains and i had my left kidney removed do to cancer 2 weeks ago.and my surgeon dont want to listen to me and don't care I'm in pain. and don't want to help with pain management.so i will love to 👂 advice and im in pain. I'm starting to have really bad back pain as well get back to me.

16

Thanks for your input debflo38.  I had a similar experience with hemorrhaging two weeks after right partial nephrectomy in 2016.  Had the embolization with three coils, followed by six months of a ureteral stint. Ever since I've had severe pain all around the right thoracic area for 17 months and counting.  I've had several spinal injections thinking it to be nerve damage. Had a PET scan, MRI,  numerous CT scans and have not been able to discover the etiology of my pain. Taking oxycodone 4Xday for minimum relief. It's very discouraging to live like this but, fortunately, I have a husband who has seen all I've gone through and understands.

17

Hi debflo38. I am new to this group. Hoping for some help. My Dr has said I have a mass in my Kidney. Because of the amount of growth in a short time, and the houndsfield units in my 3 phase CT, the Dr says it is a 80% chance it is clear cell carcinoma. He suggests a radical nephrectomy because of the location of the tumor. He say ablation is an option, but may take 2 or 3 treatments over a year or two, and still may not get rid of it. Not an option he suggests. The tumor is in the middle of my kidney.  He says a needle biopsy is dangerous in the kidney, because cancer cells can be released and spread. As we get closer to surgery date, Oct 16th, 2017, I am getting quite nervous. What if they take it out and it is not cancer?  Then I just had a major organ removed, for what?  Is this normal to give a patient a percentage like this, AND still do surgery? Should I insist on a biopsy? If I agree to the surgery, which, I already have, but as I said, I am getting nervous, freaking out, actually, What should I expect in the recovery stage?  Any insight you can give will be greatly appreciated. 

18

Hi sadiesmother, I could have written your post. Can I ask if what you described in your post from 12 months ago is still applicable today? My exact same op as yours was 1st April last year and I'm still experiencing all the symtoms you mentioned. Are you?

19

Hi JCLIF, the Docs know pretty much what they are doing. They see pictures like yours on a regular basis and don't make too many mistakes. I am assuming you will have had your op by now. I hope everything went well. Reading your post I would assume you had your entire kidney removed. The better news would be that a full nephrectomy is easier to recover from than a partial. And stop freaking. You can manage perfectly on one kidney. And it is better safe than sorry. Just don't play rugby or drive to fast, when you can drive again I mean. Best wishes for your recovery.

20

I am still having pains near incision area and on my back right side... family doctor is thinking scar tissue might be attached to my intestines.. but he doesn't have suggestions on how to fix or what to do next... I'm still only back partime work due to all this... I can't drive long distance either, about an hour before I am shifting around in my seat trying to get rid of pain. I don't have answers... I wish I did