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Surgery story and post surgical pains, please share!

smurfin57
Posts: 22
Joined: Sep 2009

Hey every one, I just wanted to share my experience with a partial nephrectomy. Surgery at Mayo in late October. Open insicion because of location of tumor. The pain was unbearable two to three weeks after.I had an infection and kidney stones a month later and it was very painfull and scary. I am finally back to work as a firefighter after 3.5 months. I still have pains at the surgery site and my stomach muscles. It seems to be getting better. The doctors all say I have a good prognosis yet I am a stage two grade three, which isn't very good. I am kind of tired of getting quoted my percentage chances of survival. I am waiting with baited breath for my next scan which will be in a few months. I am trying to stay healthy and eat better (which is hard) Please feel free to share your experiences in this discussion.

chazman1117
Posts: 1
Joined: Feb 2010

I had an open partial left nephrectomy on January 25 @ Sloan. I am going back to work in law enforcement, hopefully, on March 8.

I am just about able to lay on my left side this week. Pain is still there, mostly in my ribs and back. The incision site is tender and my stomach muscles are shot.

I have real concerns regarding the kidney stones, as I suffered frequently prior to my diagnosis.

I have a few nodules on my lungs that have to be looked at in 6 months for growth.

I have been repeatedly told not to expect to return to "normal" for one year+

I just keep telling my self how much worse this could have been, and how much worse other types of cancer are.

smurfin57
Posts: 22
Joined: Sep 2009

Chazman,Thanks for sharing your story. Good luck with your return to work, I hope its light duty. As I said my pain was bad up to 3.5 months. Usually I had to lay down when the pain started. It was mostly my back. The pain meds made me feel nauseated. My stomach muscles still hurt and it has been 4 months now. I am wearing a binder to kinda hold some tension there. Are you starting any chemo for your nodules? I hope you are doing well and if you have any questions feel free. Steve

NoDak50
Posts: 2
Joined: Jan 2010

I am pretty new to this site and I have never posted anything... I was glad to read your story smurfin57 as I too had my surgery at the Mayo Clinic. I was diagnosed in early November and had my surgery on the 15th of December. Like you it was an open incision due to location of the turmor. I also had horrible pain, which I was told was mainly nerve pain. It felt like a branding iron inside of me. Once they got that pain under control I was much better. However, I still have some pain at the surgery site and stomach muscles. I am also experiencing rib pain when I lay down. I am scheduled to go back to Mayo on March 8th for my 3 month check-up and am very nervous about that. I can only pray that all is good. I have been reading up on all I can about this type of cancer. I even made an appointment with my husbands oncologist so that she could explain to me why I didn't have to have chemo, which of course, I am very thankful for, as I watched my husband go thru that four years ago with his bladder cancer. I wish the best for you smurfin57 and thanks so much for your story..

icemantoo's picture
icemantoo
Posts: 1705
Joined: Jan 2010

I am 7 and one half years post surgery. Everything looks good so far and the doctor says I will die of something else. I lived thru your post surgery stories and it was not fun. Things do get better and the surgery sure beats the alternative.Hang in there.

smurfin57
Posts: 22
Joined: Sep 2009

Icemantoo, thanks for your nice post. Yeah it's pretty scary isn't it. My short term problems definately overcame my long term worries about dying. You sound like one of the lucky ones, I hope you remian healthy. Did you adopt any healthier habits? How did you pain turn out. Does it finally go away or do you just get used to it? I am back to work and returning to some normalcy, I am keeping my fingers and toes crossed! Thanks again Steve

smurfin57
Posts: 22
Joined: Sep 2009

Nodak, thanks for your post, I hope you are doing well. I was wondering if you had Dr. Chow or Bruner? I too had the hot burning pain in my stomach muscles. My back pain is much better but sometimes still acts up. I still do have some pain in the stomach muscles but it is much less. The Urologist's at Mayo seemed unconcerned about my pain. I decided to wear a wide elastic binder to hold some tension on my stomach and this seems to help some. I'm not sure that this will get better. Good move on going to an Oncologist. My personal doctor recommended that I see one, when I asked at Mayo they said the Urogologist would handle it. My Oncologist explained alot about my Kidney cancer. It seems that only 5% of patients respond to the chemo. He also said that they reserve chemo for the more advanced patients. I was reassured that Kidney cancer is slow growing and the course of treatment usually is surgery. Have you considered a PET scan? Good luck and feel free to ask me any questions, or just to make some comments!

Frank Fitz
Posts: 19
Joined: Jan 2010

I had my left kidney, ureter and bladder cuff removed on 1/22/10 by Dr Chow at Mayo. I am doing pretty well. In fact, the worst of my pain and recovery issues surround the nerve damage, on my side, that apparently occurred when they put in the scope during the laproscopy surgery (I have a bulge on my left side along with some numbness).

My follow-up is mid April for a cystoscopy to see if any cancer cells went into the bladder and started forming a tumor. My transitional cell cancer apparently has a knack for going to the bladder next. No cells showed up anywhere in the various scans.

It seems rather interesting that there really is no follow-up following surgery -- not even with information on diet, excercise, etc. Maybe an Oncologist is a good idea but I was also told that was not needed.

Good luck to all and keep communicating.

NoDak50
Posts: 2
Joined: Jan 2010

Hello again smurfin57. I haven't been online in awhile, and since I can't sleep tonite thought it was a good time to surf the net. My doctor at the Mayo Clinic was Dr Michael Blute. He was also my husbands surgeon four years ago with his bladder cancer. I guess I was lucky to get him when I did as he has since retired and moved back to his home in MA. I was just there for my three month check-up and thank goodness all is looking good. I was told at Mayo that they let our home Docs take care of the pain part, as they don't deal with that. I am doing well, but I still have some pain now and then. My main complaint is that I am still so fatigued. I just don't have alot energy these days. Hope all is going well for you also..take care now.

Patrick70
Posts: 1
Joined: Mar 2010

I had prtial left nephrectomy on June 16 and again on November 9th. (long story) The pain I had on my first one was my hips, being on my right side so long slowed me down bad, plus loss of feeling in my right foot. As of being 5 months post op I still have limited feeling in my right foot and no feeling in my back, half way down to right below my waist. I had an abscess on my incision in January, that sucker took 5 to 6 weeks to heal and to stop leaking. The worst part of both surgeries was the lack of sleep, it took 6 weeks for me to sleep all the way through the night.

rae_rae's picture
rae_rae
Posts: 280
Joined: Oct 2010

It's been 5 1/2 months since my radical nephrectomy. I still experience numbness, nerve pain and a lot of tightness in the upper abdomen and difficulty breathing due to my incision location, anemia and B12 deficiency. While none of it is severe, it is very annoying.

I was also stage 2, grade 3, which I look at as GREAT compared to what it could have been. I don't worry about my three month check ups and go on living my life as before. Life is full of change and never what we expect so whatever the future brings- I will deal with it one day at a time.

While the forums and online information are all great resources, I found that limiting the amount of time spent online reading about kidney cancer changed my perspective and decreased my fears. Not every story is a scary one, but those are the stories we most often read.

Everyone finds their own way of dealing - personally I don't consider myself a cancer survivor - I just have a really cool scar to add to my collection. Every challenge is a chance to grow and learn and find out how incredibly strong you are.

While I do drink more water and gave up drinking any alcohol altogether (just a personal choice), I can't say as though my diet has changed much. I still eat too much salt and love chocolate.

What I did come to realize was when faced with the possibility of my days being numbered, I realized my bucket list was spending more time with my loved ones and not taking friends and family for granted for one second. At the end of my life I want to be remembered fondly and loved deeply and that I gave much love in return.

God Bless,
Rae

Jamie1.3cm's picture
Jamie1.3cm
Posts: 188
Joined: Jan 2011

Those wide elastic binders really can help with the pain. Just the extra support makes a difference. But be careful with those very physical jobs. The post-surgery hernia rate is higher than people like to mention. Watch for that tell-tale "bulge." Doesn't mean you have to get it fixed -- I go years before getting mine fixed, and then re-fixed when the first fix didn't work (and it's a hard recovery too!). But that hernia is definitely not pleasant. I'm glad you're doing better, Murph.

Someone above mentioned not spending too much time online reading about cancer, and I actually agree. I'm also on a support site in the UK, and everyone there has very serious kidney cancers -- large tumors, metas'd, on many meds, etc. I noticed it was really bringing me down. Here I am with my dinky little tumor; I felt like an imposter!

babycakes11's picture
babycakes11
Posts: 7
Joined: Apr 2011

I am having some issues with my breathing as well and my doctor says it's from the incision. It kinda freaks me out when I am going to sleep or even sitting around and I all of a sudden it feels like I can't breathe and I am gasping for air. Is this the same type of issues you are also having?

rae_rae's picture
rae_rae
Posts: 280
Joined: Oct 2010

I was also cut under the breastbone and down my left side and it has affected my breathing. Often it feels like I have an elephant sitting on my chest and even a brisk walk causes shortness of breath and pain. It's because it is so close to the diaphram/lung area (so says my doctor). I started taking an anti depressant (Celexa) a few weeks ago which has helped me feel a little more "alive", focused and has alleviated some of my nerve pain, which in turn has helped me sleep better at night and has somewhat helped the breathing issue (I don't have intense pain when taking deep breaths). I also had a deep tissue massage on my abdomen at 5 months post op which helped somewhat.

Between the iron supplements, the B12 shots and the Celexa, I am starting to get my groove back. I am now 6 1/2 months post op. It will get better over time!

Katielynn
Posts: 61
Joined: Apr 2011

Hi rae rae,
I'm so glad I read your post. You seem to have a very optomistic attitude...I too amd "trying" to limit my browsing about my problem....It does seem the scary stories far outnumber the positive ones, such as yours...I too will add another scar to the family of scars I already have...I have to try and constantly think that things could definitely always be worse...and make the very most of every day...I too started to drink more water, don't know if that will help, and my two favorite food groups are also salt and chocolate...I'm trying really hard to kick the salt habit, but the Easter candy is still calling my name...Once it's gone, I'll work on limiting that also.....Take care, and enjoy the day.

CDMeyer
Posts: 1
Joined: Mar 2011

I feel kind of lucky compared to most stories I've read here. I had a 9cm x 6cm x 5cm tumor on my left kidney (Chromophobe type, Grade I) (stage 1 to 2 - confined to kidney, but starting to stick to renal vein inside kidney) found on a CT scan after a kidney stone attack in late Jan this year. Surgery was scheduled for Feb 14 - got the big slice (8" horizontal scar about 3" above my beltline) and removed entire left kidney. Spent 3 nights in the hospital. Got off the morphine drip after Day 2 and have taken no pain medication since then. First week after surgery I had trouble urinating (had to go every hour and could not fully eliminate), also the morphine made me constipated until Day 6. My bladder was back to normal on Day 8. Walked 1.25 miles on Day 13. Went back to work on Day 15 (desk job) with no problems, except drive to/from work hurts when hitting bumps in the road. Day 33 after surgery (last Sat.) walked my 2 large dogs myself for the 1st time, which made me very happy. This week (5th week)started to notice less pain when driving over bumps. Still walk slower than normal and my abdomen feels very tight and like there's a lead weight in there. Also many of my pants are too tight at the waist - gained about 1-2" in my waist even though I've lost 5-7lbs. I think maybe the abdominal muscles that were cut have caused my belly and waist to expand a little.

puppetman
Posts: 53
Joined: Mar 2011

I will go this Monday to see my Doc to see when I will have my right kidney out, I already have alot of back pain , I have 6 herniated disc in my back and 2 in my neck plus a plate in my neck, so I already have alot of pain, I just wonder how much more pain I will have?

MandyBear
Posts: 14
Joined: Jan 2011

Remind the doctors/nurses and anesthesiologist about your neck & back issues.
That's very important. No telling about the pain..everyone is different.

MandyBear
Posts: 14
Joined: Jan 2011

I also experienced a radical nephrectomy with a very large tumor. I had skin pain, urinary pain and stomach pain for a good long time. Yes, they cut through our entire abdomen wall..it saves our lives to get in and get out with a large tumor like that. Good luck with your recovery. I'm 30 years post surgery!

puppetman
Posts: 53
Joined: Mar 2011

WOW, 30 years post surgery "thats great" I go to have My surgery on May 4th, I hope and Pray things go ok, a few days after I get back home, I will get on here and let You all know how I am doing, I am having all of My right kidney removed.

Jrow
Posts: 13
Joined: Nov 2011

I don't see any 2012 comments here, so I may be in the wrong "rabbit hole".

I am 9 months post Mayo Clinic open partial nephrectomy. My doctor was Lebovich, but honestly, in a teaching hospital, do you really know ~who~ does the actual cutting?

Anyway, at my last check up I was NED so this bulge where the muscle is so thin due to nerve damage is really just an annoyance, but I'm putting it out here in case anyone else is wondering if theirs is "normal". 3 months post surgery I was still hoping it was fluid that would eventually resolve. However, after this last CT they say it is not fluid, but rather my intestines pushing out like a hernia. I was finally told that nothing can be done for it. My husband suggested exercise and they said no. The only possibility of repair is more major surgery using that "mesh" that is currently under investigation. No thanks.

I notice it especially when I am active, like walking all day. But as mentioned in another comment, the binder or corset-type garment helps. They sell them at the hospital pharmacy.

I'm just wondering if laproscopic surgery patients encounter this same thing? By the way, I had RCC Chromophobe, Stage 1, Grade 2, 3.5 cm tumor.

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Jill, haven't heard from you for a while. So glad to hear you're NED. I'm supposedly likewise, at the moment, at least). I'm also chromophobe like you (but stage and grade 4 and 9cm + a recurrence).

You're unlucky, I think. I had a big cut (about 10") which they opened up again for the second op. and I've got more or less no bulge to show for it. I suppose a lifetime of dabbling with martial arts, weightlifting, rowing etc gave me a decent muscular corset which probably helped.

I can understand your lack of enthusiasm for the mesh although for some it has been the only option and has been an acceptable one.

Did they tell you why they vetoed your Husband's suggestion of exercise? I would have thought that that was a good idea - pursued very carefully though, with expert guidance. Our onboard expert here is our good friend Fox, as a physical therapist, so I hope he might care to express an opinion.

NewDay's picture
NewDay
Posts: 182
Joined: May 2012

Hi Jrow,

I had a bulge and bruises appear in my lower abdomen 2 weeks after my laparoscopic radical nephrectomy and went to the ER where they diagnosed it as a hernia. I went in to see the Urologist a few days later, but had to see his PA instead. She pushed on it and said it was just fluid. The surgeon stopped in for two minutes and, without even looking, stated that he had the same opinion. They say it could take weeks to months to resolve. I have scans next week, so at least maybe I will know for sure what it is. It only bothers me when I walk a lot. I hope you find a solution. Maybe this is one of those cases where you need to get a 2nd doctor's opinion about either the surgery or exercise.

Kathy

dhs1963's picture
dhs1963
Posts: 401
Joined: May 2012

My showed up about two weeks after surgery. It was painful, swollen, etc. Dr looked at it, poked around and said it was a hematoma/seroma. Then it started draining...and got a superficial infection. Overall, it finally closed again after 7 weeks. (about 1 week ago).

Good luck with it.

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