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My experience after radical nephrectomy

cdnizzle
Posts: 8
Joined: Feb 2020

I thought I would share my experience losing my kidney to renal cancer.  I have questions about some of my post-op observations, and I've engaged physicians for advice and solutions, but to little or no avail.  Maybe this community can do better.  I know you can do better than my urologist, who requires that patients ask the perfect question to deserve a proper answer.  

I had a left radical nephrectomy 10/26/19.  The 2 surgeons both felt everything went as well as could be expected.  I was out of the hospital in 2 days, and pretty much back to myself over the 'normal' timeframe, minus all the horrible scars.  Here's where things get weird/disconcerting:

1. My blood pressure pre-surgery was in the 'pre-high' range, and moved into the 'high' range after surgery.

2. I had been complaining about groin pain in the hospital.  It was dismissed as probably related to the brutalization I underwent in surgery, which was fairly believable, and a physical exam was not performed.  A few days after returning home, my scrotum rapidly swelled enough to adopt the consistency of one of those foam stress balls.  There was also other swelling indicative of an inguinal hernia.

3. After the surgery, I noticed a bulge on my left flank, which was in the general area of one of the small incisions made for instruments during the surgery.  There is no pain, discomfort, palpable mass, etc.  It persists to this day.

For item 1, I did not receive an answer that indicated any knowledge of kidneys from my urologist, but likely because I asked the question wrong.  I am waiting for an appointment with my GP to hopefully get that answer.  I will also be asking my oncologist when I have that appointment in a couple days.  I was referred to a general surgeon for conditions 2 and 3.  For 2, the surgeon agreed, it was an inguinal hernia, and stated it likely existed before surgery, but flared up due to inflating my abdomen with CO2 during the nephrectomy procedure.  Treatment: open hernia repair.  For item 3, the surgeon speculated it could be a motor nerve that got severed during the nephrectomy procedure, resulting in muscle flaccidity.  Treatment: good vibes.  

The hernia has since reduced to the point where it is hard to detect, and causes me 0 discomfort (although I am left with some moderate size differences between sides), so I opted to kick that can down the road.  

I'm dissatisfied with the doctors I've seen thus far, and I no longer want to filter all the misinformation that I get from Dr Google.  I hope someone here knows some proper resources for answers/guidance about things like post-nephrectomy diet to address/prevent things like high blood pressure, kidney stones, kidney disease, etc.  I also wanted to make sure people know that you do not necessarily go back to 100% normal after a radical nephrectomy, and you can encounter risks beyond the more or less absurd concern about possibly injuring your remaining kidney while wingsuit jumping or shark wrestling.  Also, your beach bod will be gone, but probably everyone already knows that.  

Thanks in advance!

a_oaklee
Posts: 512
Joined: Nov 2013

I wanted to let you know that some men have a swollen scrotum and that is why they seek out a doctor, and eventually get diagnosed with renal cancer.   You can read about it more by using the search function and type in swollen scrotum RCC, or something to that effect. It can get worse postop, but eventually gets better.  While it's not uncommon I am surprised that some doctors don't know about the possibility of it being a sign of renal problems.  It has something to do with the blood flow being restricted by the tumor.  Guess it causes this swelling.    I have no information to give you about hernias in this region, but thought you might want this other info.  

cdnizzle
Posts: 8
Joined: Feb 2020

Thanks for the info!

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