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3 weeks post op. When does the pain end??

Steph85's picture
Steph85
Posts: 163
Joined: Feb 2018

I'm 32 years old and I had a open partial nephrectomy on my right kidney. I'm a stay at home mom to my 2 yr old and also have a 5yr old. I'm still having pain above my incision site which is from mid abdomen to my flank side. Having rib, abdomen, and back pain. I'm trying not to take oxycodone but tylenol hasn't been working. I'm also getting intermittent pain on my left flank. I'm trying really hard not to over do it, it's hard when my boys want my attention. Anyway, has anyone experienced pain like I have 3 weeks out? Does anyone know how fast rcc can metastasize to your lungs or anywhere for that matter? I'm having some tightness and pain in my right lung. Aye... 

-Stephanie

icemantoo's picture
icemantoo
Posts: 3278
Joined: Jan 2010

Stephaie,

 

At 3 weeks the worst of the pain should be over. You are still healing. As for mets to the lung you probably had a small tumor given the fact that you had a partial and mets are very unlikely with small tumors. Please give your tumor size with your question or fill in your My CSN Space so we can try and answer that question with more information.

 

Icemantoo

Steph85's picture
Steph85
Posts: 163
Joined: Feb 2018

My tumor was 3.2 cm stage 1 grade 2. Clear cell rcc. Thank you for responding so quickly! 

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Hi Stephanie. What you're describing sounds normal for 3-weeks out. I had a radical nephrectomy, though it was laproscopic, not open. I was still hurting well beyond three weeks from surgery, however, the pain did lesson as time went on. My advice on the oxy is that unless you have a history of addiction or for some other reason can't/shouldn't take it, take 'em if you've got 'em. Your body has been through a major trauma, and you need rest and healing. I know that's tough with two small children, especially when one isn't old enough to be in school yet. Is there anyone who can help with child care, even if for some short respites? One of the benefits to the narcotics is that they make  you tired so you can sleep, which is an essential part of healing. It's good to get up and move around as much as you can, but it's also important not to overdo it and to get plenty of rest during recovery. 

As for lung mets, while I do have them, I'm certainly no expert on their development. I think a lot can depend on whether your tumor was fully encapsulated or if it may have gotten into blood vessels or other tissue. Most people don't have lung met issues this soon after surgery (assuming all pre-surgery scans were normal), though I guess anything is possible. If it keeps up, definitely talk to your doctor soon. 

I wish you speedy healing and clear scans in the future.

Gary

Steph85's picture
Steph85
Posts: 163
Joined: Feb 2018

Thank you for your reply. My tumor was 3.2 cm stage 1 grade 2. Clear cell rcc. Difderent cancer's run in my family. My Mom died 9 years ago from esophageal cancer and I'm just scared of going down the same path.

Matt1979
Posts: 9
Joined: Dec 2017

I also had an open partial late November.  Three weeks out, the inscision was still pretty tender.  Every week thereafter had major improvements, I even started to sleep on that side with that huge inscision at 4-5 weeks...       

My back pain lasted until about 2-3 weeks ago, but it was never really intense.  More like a dull ache that was worse when I was leaning against something.  Especially riding in a car.   I was alternating between ibuprofen and tylenol, and felt the the ibuprofen worked much better for me.  

Lindaco
Posts: 1
Joined: Mar 2018

Are you allowed iboprufen?  My doctor says that is one of the meds that is not allowed... 

Matt1979
Posts: 9
Joined: Dec 2017

I don't recall being told not to take it.  Now I'll have to ask at my next follow up.  Thanks for the heads up.

icemantoo's picture
icemantoo
Posts: 3278
Joined: Jan 2010

Stephanie,

 

At 3.2 cm your tumor is just a little puppy. Mets are rare under 4 cm. We all went thru the worring anyway. So far so good.

 

 

Icemantoo

Steph85's picture
Steph85
Posts: 163
Joined: Feb 2018

Good to know. Thank you

Cybball
Posts: 111
Joined: Nov 2017

I had an open parial on 1/26.  My incision is pretty sore if I’m up doing things.   Seems better if I sit or lay down.  It’s getting better, but very slowly.   Try to get some rest.  

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I can't compare exactly, because I had a radical and you had a partial. I was off work 6 weeks and glad I was. I didn't feel normal for months. Sorry.

Lifting and being active may not be a great idea if it puts stress on your wounds. Walking, though, would be good for you. Just try and limit the bending and lifting to as little as possible.

2 years after my nephrectomy, I had a met to my adrenal gland (the one that had been attached to my kidney). I healed up faster on that one, but it had it's difficulties too, because on that surgery I had a reaction to the surgical glue so the wounds took longer to heal. Way longer.

You mustn't lift your kids or let them jump on you until you've healed. I imagine it's hard, but you need to heal.

At Stage 1 Grade 2, you have a pretty good chance of it never coming back. Better than 90% maybe as high as 95% that you're healed from the surgery. However, you should have a baseline CT neck to knees after your surgery to make sure there's nothing else there. If your oncologist really is willing to be thorough, you could also have a nuclear bone scan (to make sure you have no bone mets) and an MRI of your brain. This is what they do to make sure your status before they put you in a study. They may not be willing to do all of that since you're risk is low for mets. However, I would think an oncologist with experience with RCC would be willing to do a CT of chest/abdomen and pelvis (with contrast if you can) in order to have a baseline after your surgery and to make sure you don't have any mets.

Who are you being followed by? Is it someone with RCC experience? If possible, I'd want to be followed by a urologic oncologist at least (not a regular urologist), but the best is if you can be followed by a medical oncologist with RCC experience. They are the ones that would treat you should you ever have mets.

Keep in mind your insides heal slower than your outsides. When your wounds look healed up, it's still going to be awhile before the muscles that were cut heal, and you get used the changes in your kidney function now that your kidney function may be somewhat compromised.

These tumors grow pretty slow. If you had a CT of your chest/abdomen and pelvis and they didn't see other tumors, it's impossible for you to have a tumor large enough for you to feel it somewhere. It's very, very unlikely.

We all suffer from some hypervigilance after our initial cancer diagnosis and treatment. It doesn't mean you ignore things, though. If something comes up and it's bothering you, make a note. If it sticks around long enough, definitely bring it up to your doctors to get checked out. It takes quite a while to start to feel normal. For me, I was Stage 3 and Grade 3, so I was really worried about recurrence. I was followed closely and another tumor was found after 2 years. It was removed, and now I've been free of tumors for 3 years. Now I get CT scans of chest/abdomen and pelvis every 3 months and the doc I see is a medical oncologist with RCC expertise. He insists I get followed this closely, but I was Stage 4 with that additional met to my adrenal gland.

Hopefully, you'll be followed and you'll never have another tumor.

Best to you!

Todd

Steph85's picture
Steph85
Posts: 163
Joined: Feb 2018

Thank you for your reply. I'm not seeing an oncologist. I'm still seeing my urologist who was also my surgeon.  I would love to get a bone scan or head to toe ct. I've been having spine pain right between where my kidney's are for months before they found the tumor. I thought it was all related to the tumor, but still having the same pain. Hopefully it is just related to the kidney healing but.. I feel like its not. I've lost so much of my family to cancer, I don't want to put my boys through the same pain. 

Thank you again for your reply and advice

Stephanie

rdoyd2
Posts: 80
Joined: Aug 2016

I was feeling a lot better at three weeks. I had my left kidney removed . full neph. It was done robotically . I only had 3 small incisions. i was sent home the next morning. With no pain meds or a script for meds. I had a thing on my side that had numbing meds in it that had a tube down to the incision. I removed it at home after a week. Oxyies are very addictive . I would not take them if you don't have to. My biggest issue was all the gas  . I would try to tough it out for a few days and if it is still causing you issues have doc write you a script for something else that's not so addictive.oxies have ruined a lot of people's lives.

Steph85's picture
Steph85
Posts: 163
Joined: Feb 2018

You were sent home the next day? Oh man! I was hoping to do the robotic lap. But my tumor was next to a vein and concerened about me bleeding out so I had a OPN. I was in the hospital a week and it was the wost week of my life. The gas was so very painful. I'm taking tylenol in the day time. I feel the same way about oxies. Addiction runs in my family so I'm being super careful. Thank you for your reply. I guess time heals all wounds ❤

Stephanie

rdoyd2
Posts: 80
Joined: Aug 2016

with the aches and pains we all were and or are still scared it's back ! What I do is wait and see if it's still around two weeks. If it is I call my doc. We all have health anxiety issues now . Some of us more than others

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Well, Karen, I am sorry you are having pain. Remember you are healing, but still..have you tried ice and anti-inflammatories, like Ibruprofin 600mg (OTC 3=200 mg)??

Also I wore a soft back brace that wraps around the abdomen with velcro. It saved me from strain and Pain. I would place ice packs over the largest incision and that reduced the swelling and pain beneath.

Also..are you you are probably doing more than you should be, given you have a little one and a household to take care of? Do you have help? Meals, cleaning, babysitting kind of help? Are you picking up your child? All no no. Your insides are trying to heal. Also, being low in iron can make you more tired and sore. Make sure you get that level checked out by your primary. There is OTC Slow FE that helps. You may not be anemic but could be. 

Keep us posted. i feel for you. 

Email me if you need more support and help!

Sending you healing hugs,

Jan

Steph85's picture
Steph85
Posts: 163
Joined: Feb 2018

Thank you Jan. My mother in law was here for 2 weeks but left this last saturday. My husband is here... He does what he can I guess. My boys only want their mommy so its a bit difficult. My urologist was a little nervous about me taking NSAIDS. Since I was on them for awhile before my cancer dx. The hospital gave me a wrap to wear and it does help. Thank you for your reply. It's so nice to have someone to relate to and all the support. I wish I would have joined csn sooner. 

 

Happy valentine's day!

Stephanie

ImNotDeadYet's picture
ImNotDeadYet
Posts: 244
Joined: Apr 2017

Your oncologist is right to be wary. They told me no more NSAIDs: ever. That includes ibuprofen and aspirin, among others. Tylenol does help, though it's not an anti-inflamatory. I think that's why I needed the Oxy - when the pain was severe, Tylenol alone wasn't enough. Good luck with this!

APny's picture
APny
Posts: 1987
Joined: Mar 2014

I was told the same thing about NSAIDs and told to take Tylenol instead if having pain. I think with two young children you're doing a lot more during the day than you realize, so not surprised that you're still feeling pain and soreness. Working at a desk job is one thing but running around after a toddler and tending to a 5-year old is quite another.

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

Everyone is different, but it does get better!  Today marks two weeks since my radical neph (left kidney).  I'm kind of in the middle, it was started lapro....then I started to bleed out and they had to come in and put a big incision under my ribs to fix the artery (and I recently found out that's the incision they pulled the kidney out of).  By far the first week was the worst for me.  After that,  I could start to feel things get better and easier every day.  Today, I'd say I'm at about 85%...main issue with any soreness being where the big incision is.  I'm also on my fourth day off of oxy.  I want to stay off, but the one negative thing since I've stopped is my sleeping at night, or lack of.  Not being able to roll over is starting to get to me and I'm just not sleeping much.  I'm going to start taking Tylenol before bed tonight and see if that helps....otherwise I'm considering taking one Oxy at bedtime just to be able to sleep.  The remainder of my staples come out tomorrow, so I'm hoping that will make a difference, too.

Anyway, good luck!  Things WILL get better...just stay the course!

Steph85's picture
Steph85
Posts: 163
Joined: Feb 2018

I would have had lap but my tumor was too close to a vein so they had to open me up. I'm now 6 weeks post op and finding my "new" normal. Yes, still having incisional pain, but I am always on the move with my 2 yr old and bending down so I guess its expected for a little while. My urologist said to take ibuprofen to help with my pain. Only for a few weeks since its still not a good idea to take it. I was still taking oxy with tylenol and not getting relief. Now I hardly ever have to take oxy. I still have pain while "trying" to sleep. I'm a side sleeper so sleeping on my left side (since my neph. Is on my right) and on my back I wake up in a lot of pain. I've been mostly sleeping on my recliner. It helps but I wake up with tension headaches. I can't win haha! I was rx muscle relaxers a while ago for my tension headaches so I take that at night and it helps me sleep. It will get better. Best of luck to you! 

 

**Stephanie

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Well I had a partial, laproscopiacally and my youngest is 15 - but i had 3 kids in 4 years and you are definately in a situation where 'getting off work' is pretty much impossible.   Just try to be deliberate with your movements, and slowly do some stretching and keep walking and moving.  It will get better, and you are most likely just plumb worn out from managing the last few months and the last few weeks.    If you are thinking you probably shoulnd't lift, move, drive somewhere, have people over, or do something then DON'T.   Unless one of the kids is in mortal danger.   You just want to let all the pain settle, all the organs unswell - they got moved around as well and keep working on better sleep and rest, which will come as the pain decreases.   Give yourself a good 6 months of just being kind to yourself.   Having read so many people's posts here the one regret people have so often is taking on too much too soon.   Whether it really impedes recovery or just makes you worry that you impeded recovery I don't know.  I do know that as a Mum to young children you might not feel like you have a choice or suffer mummy guilt, just try to put yourself and your recovery first.    

Good luck. 

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