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Wife had partial left nephrectomy - got the pathology. Questions.

bugsterama
Posts: 2
Joined: Sep 2017

Hi,

In June, my wife Laurie was having issues with back pain.  The doctor at the time recommended physical therapy, which didn't seem to help, and a visit to a neurosurgeon, which basically told us "your back looks fairly normal for a 51 year old woman."

The back pain became stabbing side pain, and a visit to our primary care physician -- including waiting for  1 hour 30 minutes because the doctor was so far behind.  When she did finally get to see the doctor, she said, and I quote, "good luck getting medications at an ER".

The next night, we did end up in the ER, and a diagnosis of acute pancreatitis.  During that stay, the CT scan found a completely unrelated 3.5 cm mass on the left kidney suspected of renal cell carcinoma.

We went home, but five days later returned to the hospital, this time by ambulance, with excruciating pain on the right side.  A test showed the gallbladder was not functioning correctly, and they removed it laproscopically.

Ok, now to the kidney!

We went to a local urologist who said the tumor was in a very difficult spot to do robotic surgery (near the blood supply to the kidney).  While they could take the whole kidney robotically, they advised us to see a specialist in Tampa, which we did.  He recommended an open partial nephrectomy because Laurie was young and healthy enough that it was worth taking a chance to save the kidney.

The surgery went well, the surgeon told me immediately after that 75% of the kidney was saved, she has a 12" incision across her left side.

The next few days, Laurie was a in a mental fog (she actually thought they used too much anesthesia and she had some brain damage) - but she's ok now with that.  She spent five days recovering in the hospital, and we went home to watch reports of the upcoming Irmageddon that was coming (serveral forecast models had the eye of Irma coming within a mile of our house).  

So we evacuated on Friday to Orlando, where we'd hopefully still have power during recovery.  That all worked out great - we didn't have to make a long painful drive to Georgia, and we had power through the storm.  And we lucked out - we had virtually no damage at our place due to the early landfall well to the south.

So here we are today, 15 days post-surgery.   Laurie got a grand total of 55 Norco tabs for pain, 25 after surgery, and 30 more when I called to get a prescription before we evacuated in case we couldn't get to a doctor.  One every four hours, that's enough for about 9 days.  She's been extending them as much as she can, every doctor in Florida immediately thinks you're a deadbeat looking for drugs if you ask for a refill. 

We got the pathology as:

Procedure: Partial nephrectomy.
Tumor site: Not specified.
Tumor size: 2.5 x 2.2 x 2.1 cm.
Tumor focality: Unifocal.
Histologic type: Clear cell renal cell carcinoma with granular cell features.
Sarcomatoid features: Not identified.
Rhabdoid features: Not identified.
Histologic grade: Nuclear grade III.
Tumor necrosis: Not identified.
Anatomic extent of tumor: Limited to kidney.
Margins: Uninvolved by invasive carcinoma.
Lymphovascular invasion: Not identified.
Regional lymph nodes: Not examined.
Pathologic stage classification: pT1a, NX.
Pathologic findings in non-neoplastic kidney:
None identified.

We have a followup with the surgeon in two weeks.

Oh, did I mention our dog spent two nights at the vet hospital a few miles away?  She had a lot of sudden weight loss, we though for sure she had cancer too.  Turns out it was doggy diabetes, very manageable!

So, questions:

1.  Is it unusual for her to still want to get more pain pills after 15 days, given the above situation?  I know narcotic addiction is a concern, but realistically, it seems to me that 15 days after major surgery still might require some strong pain killers!

2. Is there anything in the pathology that looks unusual?

3. She's still bloated, and feels like something is falling out of her body.  She's constantly "holding things in" on that side.

4. There's very occassional sharp pains, any concern with this?

It was very helpful to find this message board before surgery and during recovery.  Many of the stories you've relayed helped put both our minds at ease that what she was going through was not unusual, and the prognosis was very good.  Thank you all for your contributions to this forum.

BoondockSaint's picture
BoondockSaint
Posts: 242
Joined: Mar 2017

Her report looks very very similar to my wife's report. She had robotic partial where the surgeon only had to take 10% of her kidney. We only stayed in the hospital for one night and got discharged the next day. She was a bit groggy for a few days but she didn't have much narcotic pain meds. Mostly tramadol for swelling.

Shes 6 months out now and still has an occasional day or even 2 where she still feels it. The occasional sharp pain or some back discomfort. It takes time and every case is gonna be different but she'll get there.

she just had her first set of 6 month scans and all was clean. Hang in there.

 

bugsterama
Posts: 2
Joined: Sep 2017

Thanks BoondockSaint!  Glad to hear your wife's surgery and followups have gone well!

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

In my opinion some of the items that you will want to pay attention to are: Sarcomatoid features and Rhabdoid features.  It's good that neither were identified.  The other big item to pay attention to is if the tumor extended outside the kidney.  It's really good news that it did not.  With the size of her mass along with the items listed above as negative--I'd say she has a very good chance that she will be in the clear.

Stub

 

Angie1496's picture
Angie1496
Posts: 154
Joined: Sep 2017

I am 8 days post op... Partial robotic nephrectomy.  Found incidentally on a scan looking for kidney stones on the opposite side. 4.5 CM.  I am still somewhat bloated and have occasional sharp pain near the on larger incision and the lowest small incicion.  (there are 5).  I got 30 Norco and have 5 left after 6 days at home.  I don't know enough about the path to advise that but to know she had an open neph tells me her pain is going to be worse than mine so the limit on the meds is odd to me.  My largest incision feels like it needs to be supported with certain movements.  I did read something about Open surgery the incision can bulge.  Maybe that is what she is feeling?  my path came back today as Clear Cell, very clear margins, Stage 1 grade 2.  I don't have the paper report to see the exact terminology and wont get it until my follow up next week.  I hope your wife gets releif from the pain soon. 

Hd67xlch's picture
Hd67xlch
Posts: 148
Joined: Apr 2016

Everyone is different on the pain level thing, me I never took a pain pill from the day I left the hospital after my kidney removal or both my rcc lung met surgeries, the damn things always make me sick and Id sooner just hurt than throw up and be dizzy, but thats just me. I dont think its the norm to still be in need of pain meds 15 days after surgery, but as pain meds go Norco is kind of a mid range one,JMO.

NewDay's picture
NewDay
Posts: 273
Joined: May 2012

How has her digestive system been working.  Being on pain pills that long can definitely cause serious constipation.  I have a friend who developed an intestinal obstruction from pain pills.  It is an emergency and REALLY painful.

My incision was not that big so I can't offer an opinion on whether she should still be needing pain meds.  When is she due to see the doctor again.  If she is still in that much pain, I thing she should see them asap.

Kathy

Supersum's picture
Supersum
Posts: 103
Joined: Aug 2017

Sharp pain is not uncommon. I had a new sharp pain to the edge of the wound about 6 weeks post-op, doctor can check this quickly, for me there was no problem just ongoing healing.

I am not in North America and we have different drug terms here. I will do my best but it is essential you check everything with health care professionals or heed the advice of other posters who might correct me. Do not follow my advice without checking with a health care professional.

The problem at the moment is the regular use of the hydrocodone bitartrate in the Norco which might not always be needed, but this regime or something similar is something I have seen other North American posters say they are on.

The patient might only need to be taking the acetaminophen component of the Norco, and then boosting this as needed with an opioid such as pure oxycodone hydrochloride or something similar. I can't find any hydrocodone bitartrate which is not already combined with acetaminophen, if you can get pure hydrocodone bitartrate immediate release then that would be okay for a boost as well.

You could consider stopping the Norco completely and switching to 4mg of acetaminophen per day made up of 2 x 500gm tabs 4 times per day spread out at least 4 hours apart but better if it can be 5 hours.

The tricky bit is to get a suitable opioid booster if the pain is too strong for the acetaminophen. You MUST NOT use Norco or any other medication containing acetaminophen as a booster because you will already be at the maximum daily dosage of acetaminophen. This is why you need a pure opioid booster, an immediate release version of oxycodone hydrochloride 5mg would be suitable.

Hopefully the patient can be weaned off the opioid and come to rely on the acetaminophen and then over time cut down the dosage to 3mg per day, then 2mg per day, or increasing the dosage back up on days when the pain is worse.

This is a workable strategy to get off pain medication over time. Health care professionals sometimes overlook this need and instead focus their attention on keeping patients alive.

I am fairly sure the acetaminophen is available over the counter, but you will need a doctor to prescribe a suitable opioid booster.

WARNING: you MUST NOT USE any medication containing acetaminophen if you are already taking pure acetaminophen.

Also, no alcohol at all can be consumed.

Do not follow my advice without checking with health care professionals, but you might need to push your concerns and possible resolutions in this and not just accept their first, automatic response.

Other members please correct me where needed or suggest deletion if this post seems irresponsible.

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

Mine was also an open partial but only about a 4 inch incision. So I would imagine that the pain factor is affected by incision size. I took pain meds for about 10-14 days then switched to Tylenol when needed which was enough. But again, my incision was 1/3 the size of your wife's. I went to every six hours wtih the meds after about a week and that worked for me.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Pains are your body's way of saying, "Hey! Watch it, willya? Twisting hurts, so does activating the lift-y muscles." Her innards had quite a workout, what with being cut open, stuff being pushed out of the way, some things being pulled into view, this or that removed, then everything crammed back inside and stitched, stapled, and/or glued shut. Ooosh. Gah. 

One thing I noticed really made pain worse for me post-surgery surgery was if I let my body get slumped into the shape of a "C" or even a "(" - Then it was time to get completely horizontal or even arch my back to stretch things back into where they belonged. 

Also, using the muscles of your upper back (between your shoulder blades) to sit up straight will sure hurt less than trying to use your midsection muscles.

As for the pain meds, it turned out I was allergic to them, so just a few days post surgery I decided to Just Say No. Since part of my allergic reaction was inflammatory pain, being off of them made me feel way better. Plus, I chose to deal with the pain with breathing and focusing on my breath (as opposed to the owie). 

All the best to you both - ! 

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