26 years old facing nephrectomy

I'm not a medical person, but I agree with the total nephrectomy over the partial.

My husband had the total nephrectomy (his tumor ended up being 5 cm) and I was very pleased with his recovery.

He actually wanted to play golf at 4 weeks out from surgery.

The first 2 weeks after surgery will be the worst but then it gets better from there.

Except I'm 59 and my mass was a little smaller than yours.  I also had a radical nephrechtomy because of the renal sinus involvment.   B"H my surgeon did a laparoscopic nephrechtomy and my recovery was just fine.  I was home 2 days after the surgery only needing tylenol for the pain.  Back at work part time after three weeks. Just take it slow- accept any help offered-you will feel little better each day.  One thing I wish was explained to me before the surgery is that a nephrechtomy is a big procedure and the anethesia really puts all the organs to sleep as well and it takes time for your body recover.  I can happily say that after 4 months I'm feeling great-thank g-d.

Devastated Wife said:

Getting the bad kidney out has been good.

My husband's blood pressure has gotten really better after he had his kidney removed, too!  He has even gone on less BP medication.

That's interesting - the same thing happened to me.  I've actually been off blood pressure meds since the surgery.  

Biggest hugs and prayers. 

I'm so sorry you have to be here but you'll get lots of support. If in fact it's touching the sinus the complete neph might be the best way to go. However, since it's so small and you're so young I would seek a third opinion on whether it could be done partially. I had an open partial and I'm a lot older than you but my recovery didn't seem any worse or longer than those who had it done robotically. I had surgery Monday morning, up walking that evening, home on Wednesday and sitting at my computer doing work (from home) on Thursday. Mine was about the same size as yours. All the best to you!

Ashley10101 said:

I had a partial

I had a laparoscopic partial just under 2 weeks ago. My tumor was small (1.5 cm) and on the upper front of my left kidney (50% exophytic so there was no major tissues involved that weren't already redundant) I was told it would be 3-4 small incisions (so I expected three 1cm incisions and a single 3-4 cm incision. I'm 27, female, and otherwise healthy.

I woke up to 5 abdominal incisions (plus the drain). ASK FOR DRUGS BEFORE THEY REMOVE THE DRAIN - ALSO GET A SENIOR NURSE TO DO IT!!! My nurse was a student and pulled it out so slow. It wasn't painful, but an incredibly disturbing feeling - I puked mid extraction - and it doesn't need to be that way.

Incisions: 1 is 2cm, 3 are 3cm, and one is 6cm. The doctor that removed my staples (not the surgeon) said "wow that's a lot of holes!"

In the end, I was in A LOT of pain - it is not an exaggeration to say I felt like I got stabbed 6 times. I still have trouble standing or sitting up more than 30 minutes at a time; which is uncommon for renal robtotic-laps.  The smallest incision opened up an hour after the staples were removed and now I have to clean and dress the open wound every morning, and ensure it doesn't eviscerate.

I was told my surgery was "routine" and "textbook" but I was unprepared for this. I honestly think it would be better had they of taken the whole kidney, at least then I wouldn't feel like I got drop kicked in the back. Also, I feel like 1 big cut is better than 5 small/mid cuts disbursed over nearly a square foot of abdomin. Just my opinion.

I'm allergic to most pain meds, so maybe that why it's been tougher for me. I also vomited for 14 hours after sugery (mostly dry retching as my muscles couldn't really contract enough to get anything out). I got out of hospital the next day - but that was mostly me bargaining with the nurses/doctors (if I ate solid food, they would let me walk. If I walked 3 times over 4 hours I could get my catheter out. If I peed, I could get my drain out and if my port fluid came back good, my CK levels acceptable, and I could root, then I could go home. I was never more determined to make urine and pass gas in my life!

Long story short, from what I went through, full kidney out seems fine to me, and a open surgery may not actually be that much worse than robot assisted lap depending on your body's morphology vs. the surgeon's experience.

 

Still waiting on the pathology report. I find out on the 7th. All I know is from the needle core biopsy a few months ago - fuhrman grade 3-4 clear cell RCC.

Sorry about the excessive Quilt work.Sometimes Doctors and nurses practice medicine until they get it right.  Sorry to see you and others here so young. On the upside I expect to see some 60 year survivors from you guys. Actually I may not be around for that as I will be 75 years young this summer.

icemantoo

Ashley10101 said:

I had a partial

I had a laparoscopic partial just under 2 weeks ago. My tumor was small (1.5 cm) and on the upper front of my left kidney (50% exophytic so there was no major tissues involved that weren't already redundant) I was told it would be 3-4 small incisions (so I expected three 1cm incisions and a single 3-4 cm incision. I'm 27, female, and otherwise healthy.

I woke up to 5 abdominal incisions (plus the drain). ASK FOR DRUGS BEFORE THEY REMOVE THE DRAIN - ALSO GET A SENIOR NURSE TO DO IT!!! My nurse was a student and pulled it out so slow. It wasn't painful, but an incredibly disturbing feeling - I puked mid extraction - and it doesn't need to be that way.

Incisions: 1 is 2cm, 3 are 3cm, and one is 6cm. The doctor that removed my staples (not the surgeon) said "wow that's a lot of holes!"

In the end, I was in A LOT of pain - it is not an exaggeration to say I felt like I got stabbed 6 times. I still have trouble standing or sitting up more than 30 minutes at a time; which is uncommon for renal robtotic-laps.  The smallest incision opened up an hour after the staples were removed and now I have to clean and dress the open wound every morning, and ensure it doesn't eviscerate.

I was told my surgery was "routine" and "textbook" but I was unprepared for this. I honestly think it would be better had they of taken the whole kidney, at least then I wouldn't feel like I got drop kicked in the back. Also, I feel like 1 big cut is better than 5 small/mid cuts disbursed over nearly a square foot of abdomin. Just my opinion.

I'm allergic to most pain meds, so maybe that why it's been tougher for me. I also vomited for 14 hours after sugery (mostly dry retching as my muscles couldn't really contract enough to get anything out). I got out of hospital the next day - but that was mostly me bargaining with the nurses/doctors (if I ate solid food, they would let me walk. If I walked 3 times over 4 hours I could get my catheter out. If I peed, I could get my drain out and if my port fluid came back good, my CK levels acceptable, and I could root, then I could go home. I was never more determined to make urine and pass gas in my life!

Long story short, from what I went through, full kidney out seems fine to me, and a open surgery may not actually be that much worse than robot assisted lap depending on your body's morphology vs. the surgeon's experience.

 

Still waiting on the pathology report. I find out on the 7th. All I know is from the needle core biopsy a few months ago - fuhrman grade 3-4 clear cell RCC.

I to was dry heaving first 2 days after surgery. I had a open partial nephrectomy and the spinal block was not working and i was sick i think from the diladid. I was put on fentynl and had tachycardia and hallucinated lol. Anyway, I'm 3 months post op and glad this is all behind me! Hope the rest of your recovery goes well! Oh, I'm 32 year old and I thought I was young! Thats crazy! Anyway, take care! 

Steph

Always follow your first instinc. I didn’t and I regret it. Get a third opinion if need be until you feel comfortable. This a great community with people with wealth of Knowledge.

Prime777time said:

Update.

Surgery has come and gone. I decided to have my surgery at MD Anderson in Houston. I had an open right partial nephrectomy on May 15. The surgery went well and the doctor was able to get clean margins only taking 15% of my kidney. I was out of the hospital after 3 nights. Recovery is going well and seems like each day is better. The actual incision does not hurt but the bloating and digestive (gas) pains are horrible. My lower abdomen and stomach are still bloated and swollen. 

 

I did receive my pathology report. The report was a two part diagnosis and seems to be a rare type. The renal mass indicated Renal Cell Carcinoma (4.0 x 3.8 x 2.7cm) Chromophobe Type (pT1a). The second part of the diagnosis or ”Final Margin Renal Mass” states Renal Parenchymal, no tumor present. Obviously I am not completely sure what this means because my follow up with my doctor is not until June 27. At this point I am glad that surgery is over and hoping for an uneventful recovery. 

 

Thanks for all the support! 

Glad to hear things are going well and you got to keep a big part of that kidney.  way cool! As for the gas pains, yup, they are EVIL. I lost all respect for carbon dioxide gas when I first had abdominal surgery. Walk, nap, repeat. As you're no doubt finding, it gets a little better every day. 

My tumor was also a chromie and about the size of yours. It's generally the slacker of RCCs, growing slowly. I'm nearly 18 months post-partial-nephrectomy and it hasn't bothered to reappear (yet or ever).

All the best in finding ways to keep from going crazy, waiting for your follow-up - !

Jerzy

So glad it's behind you and that they were able to save most of your kidney. Here's to an uneventful recovery!