My experience after radical nephrectomy
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!
Comments
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Swelling....
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.
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I recently had an open partial nephrectomy done and also got stuck with the dreaded bulge....I dont think its a hernia and likely atrophy from denervation. Unfortunately I hear this is quite common with open incisions and theres not much you can do for it, lots of people say it shrinks over time and becomes less noticeable. I am wondering how yours was doing after 3 years? Thanks!
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The swelling on my mid left side subsided over the course of a couple months, as I recall. I can't detect any swelling since. The muscle atrophied though, I'm afraid. Luckily it's not easy to detect other than when I'm receiving a massage on my back near the affected area, and then it's quite an odd, uncomfortable feeling. But otherwise, no swelling, no pain, no detectable loss of mobility. Very survivable. I hope yours abates as well soon.
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Thank you so much....I was afraid it was going to be permeant after reading a bunch of things online about it. I am 37 M who likes to work out and do physical stuff around the house so I didn't want this to impact my quality of life.
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I'm glad my experience gives you some hope. One thing I'll note is that for me this IS indeed permanent; that muscle has atrophied and gone away. I'm not going to grow that nerve back, and the muscle no longer had anything to do, so it's gone. The bulge is long gone, and I think that coincided with the atrophying of the denervated muscle.
You mentioned that you like to work out, and I think keeping fit will always work in your favor with things like this. I do as well, which is how I can say that it doesn't really impact me. I love cycling, hiking, snowshoeing and tennis, and this injury doesn't seem to impact any of those activities, which has been a big relief.
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Thats so nice to hear because like you i love all the things you mentioned but more importantly i love being an active dad to my son so reading your experience was indeed a big relief to me.
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