May I Join the Club?
Hi All,
Until recently, this isn't a club I had ever considered joining, but a CT Scan for an unrelated reason resulted in a surprise admission ticket. Clear RCC, at 4cm just made it in as a Stage 1A, which is good. Not so good was that the location precluded a partial nephrectomy, so four weeks ago my left kidney came out. Also less-than-ideal was the fact that it turned out to be a Fuhrman Grade 3.
The surgery itself was amazingly "low impact". My incisions were sealed using the "superglue" method, so there were no bandages and I could shower right away. Today (4+ weeks) I went for my first run (I'm a badly addicted runner)!
I have my first follow-up appointment a little over a week from now. My biggest question at this point is what kind and frequency of screening is going to be appropriate. I'd love to hear any thoughts about that, including any opinions about whether the Grade 3 should have any influence.
From browsing some of the posts on this board it looks like there's a lot of both knowledge and support located here. I'm looking forward to participating in some of the discussions.
Just to add a touch of humor, the thing that led to that incredibly fortuitous CT Scan was a temporarily-sore testicle. So it occurs to me that I may have been "saved by the ball". 
Comments
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Epididymitis
SFBOB,
Sorry gals, this is a guy thing. Like a neph., not fun at all.
Of course you may join the club which no one in their right mind would volunteer to join. As far as follow up screening you will see a variety of answers and opinions. Mine was a similar size little buggar and I had the following follow up: MRI and CT at 6 months. Several Chest xrays. Abdominal CT for 5 years, Ultrasound years 6-12. Final? abdominal CT at year 12. Several receint Chest CT's for other reasons.
Congradulations on the quick recovery. I assume you are a lot younger than me. It took me 11 months after my neph. at age 59 to go water skiing again.
Icemantoo
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Mine was stage 1a (3.5 cm)icemantoo said:Epididymitis
SFBOB,
Sorry gals, this is a guy thing. Like a neph., not fun at all.
Of course you may join the club which no one in their right mind would volunteer to join. As far as follow up screening you will see a variety of answers and opinions. Mine was a similar size little buggar and I had the following follow up: MRI and CT at 6 months. Several Chest xrays. Abdominal CT for 5 years, Ultrasound years 6-12. Final? abdominal CT at year 12. Several receint Chest CT's for other reasons.
Congradulations on the quick recovery. I assume you are a lot younger than me. It took me 11 months after my neph. at age 59 to go water skiing again.
Icemantoo
Mine was stage 1a (3.5 cm) but also grade 3. I had my open partial at Sloan Kettering. I also had the surgi tape which made recovery easier. My follow up protocol is chest x-ray and kidney US every six months along with blood tests every 3 months as I tend to be iron deficient and anemic. I know everyone here favors CT scans which is fine, but I trust my surgeon/oncologist at SK to know what he's doing by ordering US. I guess everyone should follow what makes them feel most comfortable. My one year follow up is next Tuesday and I'll ask if a CT scan would be a good idea next time. I'm not crazy about extra radiation if my oncologist feels a US is enough. Grading is an independent predictor of recurrence but my doc said stage is the most important one. That said, I take nothing for granted and sweat every follow up.
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No Bouncers
Bob,
Wow, running is SF... that's gotta be fun with the hills. I'm a relatively new runner myself and if I see even a small hill I'm crying...
Mine was also found fortuitously... I had gallbladder problems and the docs wanted to do ultrasounds. Thank God that my doctor wrote "abdominal complete" on the orders because generally they just do the right side with the gallbladder. It was like a series of happy accidents.
My tumor was 2.8 cm so same staging, Fuhrman grade was 2 in my case. I also had the whole kidney removed because I had an extra artery that was near the resection site and the doctor was concerned I would bleed too much. But he used a Terminator robot (didn't look anything like Arnold, though) and I had somewhat the same experience. It was great from a pain perspective. Now, the recent open surgery I just had for my faulty gallbladder? Different story......
So we're brothers on opposite coasts. Been to San Fran once when I was a kid. My Aunt lives there. LOVE that city so much I still have dreams about it 25 years after my visit. ( I really hope your SF stands for San Francisco, otherwise I'll just sound like an idiot, ha )
I actually asked my doctor at the last visit regarding Fuhrman and he said that, from the standpoint of scans, the only difference would be that he would watch me "a little more closely" were the grade higher. I assume this means rather than the ultrasounds and x-rays that I am getting, I would be getting CT or MRI. That may be the case with your grade. But from a clinical standpoint, they still consider tumor size to be the biggest indicator of future care so TAKE A DEEEEEP BREATH and let's thank our lucky stars.
The doctor said that it's every 6 months for 2 years then every year after that. This is in line with the NCCN guidelines. I posted a link to the NCCN website below. You have to sign up to get access but it's fairly easy. It's generally for doctors but you can sign up as a patient as well. It's chock full of information regarding the guidelines of follow up care for all cancers. The general rule is that you also have to feel comfortable with the level of care you're getting as well. I'm finding that us stage 1'ers are put in the "you were lucky, now get out of the way of the advanced people" bin. I get that and all, but I still expect to get the normal care. So make sure you go armed with that information and don't let them off the hook until you're comfortable. Here's that link:
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp
- Jay
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Welcome SFBob!
Sorry for the initiation you had to endure to join the club! But your attitude and humor will help you sail through this!
Mine was a 13 cm tumour I nicknamed "Arnold". My right kidney was removed December 2013. Stage 3, grade 2 - laprascopic surgery and they used staples....it gave a nouveau frankensteinish scar to my belly - all the rage these days.... lymphovascular invasion had taken place, and renal sinus invasion, but other than that pretty much all clear! Life's been great since then. No problems that are kidney related (other than my GFR is lower - something that can happen when only one kidney is running the show). But that is monitored and I go for my next scan next month!
You came to the right place for advice and support. This is a terrific group of people.
Hugs
Jojo
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Your sense of humor...thaxter said:On a thread here a while back
On a thread here a while back we discovered that at least three of us had pain in the left ball before diagnosis so it was a symptom
should make you fit well with this group. You can see details of my encounter with the accidental findings in 2006 by clicking my user name.
That said, you want to know what's next. Probably a test, either CT to begin with and then to ultra sound of the abdomen/pelwis, at least at 3 or 6 month intervals and then yearly after 5 years. Maybe by 10 years with no recurrence, the doc will turn you loose. The size of the tumor and stage are usually the determining factors for how frequently the tests are administered. (I would say given, but that connotates a gift I don't like receiving.)
Of course, lab work will probably be done every 3 or 6 months to monitor both CBC (complete blood count) and CMP (complete metabolic panel). The lab should also post a parallel column on your test results to tell you what the acceptable range is for your age.
The biggie they watch is eGFR-how well the little tubules within the remaining kidney are filtering out the crud in your blood. By removing one kidney, your eGFR is automatically cut in half. As the remaining kidney begins to function more efficiently, you should see the rate increase over the years, but not more than about 10 points. The eGFR rate starts at 100-120 for an infant, and goes down with age. For a 60-70 year old with no kidney disease, no cancer, no high blood pressure to damage the capillaries in the kidneys, etc., the eGFR would be in the 60-70 range. Mine dropped to 31-32 and has climbed over the past 9 years to a 41-42.
Welcome aboard. Those of us on the West Coast of sunshine have not been envious of the snow on the other side of the US. Me-I'm on the southern Oregon coast.
Donna
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Your Surgeryicemantoo said:Epididymitis
SFBOB,
Sorry gals, this is a guy thing. Like a neph., not fun at all.
Of course you may join the club which no one in their right mind would volunteer to join. As far as follow up screening you will see a variety of answers and opinions. Mine was a similar size little buggar and I had the following follow up: MRI and CT at 6 months. Several Chest xrays. Abdominal CT for 5 years, Ultrasound years 6-12. Final? abdominal CT at year 12. Several receint Chest CT's for other reasons.
Congradulations on the quick recovery. I assume you are a lot younger than me. It took me 11 months after my neph. at age 59 to go water skiing again.
Icemantoo
Thanks.
Out of curiosity, was your surgery (12 years ago?) laparoscopic? I know from personal experience that the difference in recovery from open vs laparoscopic is like night & day.
I wouldn't even think of water skiing, but then that was the case before the surgery as well.
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jason.2835 said:
No Bouncers
Bob,
Wow, running is SF... that's gotta be fun with the hills. I'm a relatively new runner myself and if I see even a small hill I'm crying...
Mine was also found fortuitously... I had gallbladder problems and the docs wanted to do ultrasounds. Thank God that my doctor wrote "abdominal complete" on the orders because generally they just do the right side with the gallbladder. It was like a series of happy accidents.
My tumor was 2.8 cm so same staging, Fuhrman grade was 2 in my case. I also had the whole kidney removed because I had an extra artery that was near the resection site and the doctor was concerned I would bleed too much. But he used a Terminator robot (didn't look anything like Arnold, though) and I had somewhat the same experience. It was great from a pain perspective. Now, the recent open surgery I just had for my faulty gallbladder? Different story......
So we're brothers on opposite coasts. Been to San Fran once when I was a kid. My Aunt lives there. LOVE that city so much I still have dreams about it 25 years after my visit. ( I really hope your SF stands for San Francisco, otherwise I'll just sound like an idiot, ha )
I actually asked my doctor at the last visit regarding Fuhrman and he said that, from the standpoint of scans, the only difference would be that he would watch me "a little more closely" were the grade higher. I assume this means rather than the ultrasounds and x-rays that I am getting, I would be getting CT or MRI. That may be the case with your grade. But from a clinical standpoint, they still consider tumor size to be the biggest indicator of future care so TAKE A DEEEEEP BREATH and let's thank our lucky stars.
The doctor said that it's every 6 months for 2 years then every year after that. This is in line with the NCCN guidelines. I posted a link to the NCCN website below. You have to sign up to get access but it's fairly easy. It's generally for doctors but you can sign up as a patient as well. It's chock full of information regarding the guidelines of follow up care for all cancers. The general rule is that you also have to feel comfortable with the level of care you're getting as well. I'm finding that us stage 1'ers are put in the "you were lucky, now get out of the way of the advanced people" bin. I get that and all, but I still expect to get the normal care. So make sure you go armed with that information and don't let them off the hook until you're comfortable. Here's that link:
http://www.nccn.org/professionals/physician_gls/f_guidelines.asp
- Jay
Thanks for the info, and especially for that guidelines link.
Yup, SF. Great city, but there's just too much tech money pouring in now. Housing prices and rents are absurd. It's rapidly becoming a place where the only people left are going to be those who bought a house long ago, and those who have a LOT of money.
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Jojo61 said:
Welcome SFBob!
Sorry for the initiation you had to endure to join the club! But your attitude and humor will help you sail through this!
Mine was a 13 cm tumour I nicknamed "Arnold". My right kidney was removed December 2013. Stage 3, grade 2 - laprascopic surgery and they used staples....it gave a nouveau frankensteinish scar to my belly - all the rage these days.... lymphovascular invasion had taken place, and renal sinus invasion, but other than that pretty much all clear! Life's been great since then. No problems that are kidney related (other than my GFR is lower - something that can happen when only one kidney is running the show). But that is monitored and I go for my next scan next month!
You came to the right place for advice and support. This is a terrific group of people.
Hugs
Jojo
Thanks Jojo.
Glad to hear things look all clear now. I imagine that with the lymphovascular and renal sinus invasion that first scan must have been pretty scary.
Re "Arnold": That's great--except the first Arnold I think of is Schwarzenegger--and when I think of him then I think of "I'll be back!" Well, maybe I'll just think of his role in Terminator 2 instead...
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Smart Ballsthaxter said:On a thread here a while back
On a thread here a while back we discovered that at least three of us had pain in the left ball before diagnosis so it was a symptom
Wow, that's amazing.
The only thing in my case is that the painful one was on the other side.
Of course, by the time I had the CT Scan the ball had stopped hurting. Guess it knew it had done its job successfully.
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donna_lee said:
Your sense of humor...
should make you fit well with this group. You can see details of my encounter with the accidental findings in 2006 by clicking my user name.
That said, you want to know what's next. Probably a test, either CT to begin with and then to ultra sound of the abdomen/pelwis, at least at 3 or 6 month intervals and then yearly after 5 years. Maybe by 10 years with no recurrence, the doc will turn you loose. The size of the tumor and stage are usually the determining factors for how frequently the tests are administered. (I would say given, but that connotates a gift I don't like receiving.)
Of course, lab work will probably be done every 3 or 6 months to monitor both CBC (complete blood count) and CMP (complete metabolic panel). The lab should also post a parallel column on your test results to tell you what the acceptable range is for your age.
The biggie they watch is eGFR-how well the little tubules within the remaining kidney are filtering out the crud in your blood. By removing one kidney, your eGFR is automatically cut in half. As the remaining kidney begins to function more efficiently, you should see the rate increase over the years, but not more than about 10 points. The eGFR rate starts at 100-120 for an infant, and goes down with age. For a 60-70 year old with no kidney disease, no cancer, no high blood pressure to damage the capillaries in the kidneys, etc., the eGFR would be in the 60-70 range. Mine dropped to 31-32 and has climbed over the past 9 years to a 41-42.
Welcome aboard. Those of us on the West Coast of sunshine have not been envious of the snow on the other side of the US. Me-I'm on the southern Oregon coast.
Donna
Thanks Donna for that preview of coming events.
Interesting about the eGFR. I just took a look at the tests that were done right after surgery, and for GFR it just says "Comment, glomerular filtration rate - SEE NOTE". But there isn't any note! I'll ask about that at my follow-up appointment. My creatinine--which was always wonderful in the past (sniff, sob)--took a big jump immediately post-surgery, but my doc told me not to worry about it.
Ah, southern Oregon coast. But you guys have gotten at least a LITTLE rain there, right? Here in the SF area we're just hoping that come August we'll still have enough water to take showers!
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First RunSFBob said:Smart Balls
Wow, that's amazing.
The only thing in my case is that the painful one was on the other side.
Of course, by the time I had the CT Scan the ball had stopped hurting. Guess it knew it had done its job successfully.
Hey Bob, welcome to the club. Nice to hear from another runner. My first run, which was about 3 miles, felt like a marathon. How'd yours feel? The good news is that your body will ultimately remember that you're a runner and your fitness level will return. But, I was surprised at how long it took to run at the same level as I did before surgery. Just feel that way now and I'm 10 months post surgery. By the way, I live in the Central Valley and work for a winery -- rain is on everyone's mind.
Good of luck on your recovery. Happy running!
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My surgerySFBob said:Your Surgery
Thanks.
Out of curiosity, was your surgery (12 years ago?) laparoscopic? I know from personal experience that the difference in recovery from open vs laparoscopic is like night & day.
I wouldn't even think of water skiing, but then that was the case before the surgery as well.
Bob,
Yes it was laproscopic.
Icemantoo
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avdoty said:
First Run
Hey Bob, welcome to the club. Nice to hear from another runner. My first run, which was about 3 miles, felt like a marathon. How'd yours feel? The good news is that your body will ultimately remember that you're a runner and your fitness level will return. But, I was surprised at how long it took to run at the same level as I did before surgery. Just feel that way now and I'm 10 months post surgery. By the way, I live in the Central Valley and work for a winery -- rain is on everyone's mind.
Good of luck on your recovery. Happy running!
You just described my first run exactly. I didn't really experience any pain from the incision area, but the rest of my body felt like I hadn't run for a year!
Yes, I can believe people are thinking about the drought there even more than here. If next winter isn't a big improvement over the last few, things are going to get downright catastrophic.
Bob
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While I am not as devoted toSFBob said:You just described my first run exactly. I didn't really experience any pain from the incision area, but the rest of my body felt like I hadn't run for a year!
Yes, I can believe people are thinking about the drought there even more than here. If next winter isn't a big improvement over the last few, things are going to get downright catastrophic.
Bob
While I am not as devoted to running as SFBob and avdoty, I normally run 5 miles on Saturdays and Sundays, and try to get in other types of workouts during the workweek. My surgery was on July 10 of last year. I walked 6 miles a day for about 4-6 weeks after the surgery, and my first few runs were difficult. I cut my distance down to 3-4 miles. It took my until about November-December to comfortably run the full 5 miles, and even at that, it did not feel the same. I pulled a hamstring and the had some back problems, so I stopped running for the winter (roads were covered with snow here in NJ most of Febrauary and March anyway. I was looking forward to running this weekend, but we just had a spring storm dump 6" on us yesterday, so I am going to do some DVD workouts until next weekend. I have learned that patience is key in full recovery and not to push myself too hard.
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Hi SFBob!SFBob said:Thanks Jojo.
Glad to hear things look all clear now. I imagine that with the lymphovascular and renal sinus invasion that first scan must have been pretty scary.
Re "Arnold": That's great--except the first Arnold I think of is Schwarzenegger--and when I think of him then I think of "I'll be back!" Well, maybe I'll just think of his role in Terminator 2 instead...
Adorable dog, byHi SFBob!
Adorable dog, by the way.
"Arnold" was named after Schwarzenegger....in Kindergarten Cop....there was a line that he said "It's not a tumour!". My husband would say that to me all the time while we waited for a date for the surgery. It kept us laughing!
0
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