new member - just discovered mass on kidney

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moonjell
moonjell Member Posts: 18

So, I just found out that the cyst on my kidney is malignant and I have to get it removed. Anyone know what I can expect now?

I've read everything from no worries to horror stories. I go to the urologist next week to discuss treatment. I think it's 3.5cm...at least that's what I was told from an x-ray. Not sure if the CT scan showed it any larger.  it's very weird because I have 0 symtoms, i feel fine. I'm pretty scared because I've never had surgery for anything except when I was a very young child. From what I've read I think I will need a partial hopefully minimal invasive. I've read recovery time from as little as 2 weeks all the way to over 6 weeks. Any advice?

 

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  • foxhd
    foxhd Member Posts: 3,181 Member
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    Yes. Many people have had no symptoms. That makes this disease dangerous because the cancer is not found early enough. Have your surgery. Take care of business and make a plan based on the outcome. Let your health care team do what they do and then do what they say. Plenty of time to get your ducks in a row after pathology report. Other wise, do a lot of reading about renal cancer to familiarize yourself with your new hobby.

  • hardo718
    hardo718 Member Posts: 853 Member
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    Welcome Moonjell

    Although I'm sorry you are here to join us, but I assure you, you have come to the right place.  Internet searches can definitely scare the bejeesus out of anyone!  They run the gammet.

    First of all, the only way to attach a definitive diagnosis of cancer is via pathology.  In other words, AFTER it is removed.  That being said, they can tell with some certainty if it is a probable cancer from testing.  So please do take it seriously.  Don't hesitate to get a second opinion.  Was your CT done with/without contrast?  Not all of us had symptoms, it can be very insidious and not unusual to be discovered quite by accident.  Personally, my only symptom was when I would roll over in my sleep and felt like I was rolling over a tennis ball.  After several weeks I went to my primary.  I have been told that those symptoms would have disappeared probably within another week or so.  My specialist states that if there are symptoms it's only during the growth stage.   I had a left partial nephrectomy via robotic surgery.  I am currently 3+ years out and cancer free.  I was 59 at the time of my surgery and recovery was a beast for the first couple weeks, although I didn't have a lot of pain.  I was only on pain meds while in the hospital (2 days), and took it once after I got home.  I was just weak as a kitten and that was hard for me, because I'm typically so active.  I went back to work after 3 weeks, with limitations. 

    Keep us posted as to your progress and if you have any other questions, don't hesitate to ask.

    Donna~

  • moonjell
    moonjell Member Posts: 18
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    hardo718 said:

    Welcome Moonjell

    Although I'm sorry you are here to join us, but I assure you, you have come to the right place.  Internet searches can definitely scare the bejeesus out of anyone!  They run the gammet.

    First of all, the only way to attach a definitive diagnosis of cancer is via pathology.  In other words, AFTER it is removed.  That being said, they can tell with some certainty if it is a probable cancer from testing.  So please do take it seriously.  Don't hesitate to get a second opinion.  Was your CT done with/without contrast?  Not all of us had symptoms, it can be very insidious and not unusual to be discovered quite by accident.  Personally, my only symptom was when I would roll over in my sleep and felt like I was rolling over a tennis ball.  After several weeks I went to my primary.  I have been told that those symptoms would have disappeared probably within another week or so.  My specialist states that if there are symptoms it's only during the growth stage.   I had a left partial nephrectomy via robotic surgery.  I am currently 3+ years out and cancer free.  I was 59 at the time of my surgery and recovery was a beast for the first couple weeks, although I didn't have a lot of pain.  I was only on pain meds while in the hospital (2 days), and took it once after I got home.  I was just weak as a kitten and that was hard for me, because I'm typically so active.  I went back to work after 3 weeks, with limitations. 

    Keep us posted as to your progress and if you have any other questions, don't hesitate to ask.

    Donna~

    thank you

    I went to the ER for what turned out to be a stone on the left side. They did a CT w/o contrast to confirm. They referred me to a urologist and I almost did not go since I was having no pain. But i went and and they did an x-ray to see if the stone was out and that's when they found the cyst. I then went to have another CT done but this time with contrast. That's when they saw it had malignant properties. I have read that a huge percentage is RCC. Should I consult an oncologist or is the urologist enough with this type? Anyway, thanks again and I'll know more in a few days.

  • moonjell
    moonjell Member Posts: 18
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    foxhd said:

    Yes. Many people have had no symptoms. That makes this disease dangerous because the cancer is not found early enough. Have your surgery. Take care of business and make a plan based on the outcome. Let your health care team do what they do and then do what they say. Plenty of time to get your ducks in a row after pathology report. Other wise, do a lot of reading about renal cancer to familiarize yourself with your new hobby.

    hobby?

    Thank you for the advise. I have a feeling I will be reading a lot about this.

  • hardo718
    hardo718 Member Posts: 853 Member
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    moonjell said:

    thank you

    I went to the ER for what turned out to be a stone on the left side. They did a CT w/o contrast to confirm. They referred me to a urologist and I almost did not go since I was having no pain. But i went and and they did an x-ray to see if the stone was out and that's when they found the cyst. I then went to have another CT done but this time with contrast. That's when they saw it had malignant properties. I have read that a huge percentage is RCC. Should I consult an oncologist or is the urologist enough with this type? Anyway, thanks again and I'll know more in a few days.

    Specialties

    My surgeon was a Urologic/Oncologist.  Since they seem pretty confident that's what you're dealing with, personally I'd look for someone with the dual specialty.  Others may chime in with differing opinions. 

    Best wishes,

    Donna~

  • Footstomper
    Footstomper Member Posts: 1,237 Member
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    hardo718 said:

    Specialties

    My surgeon was a Urologic/Oncologist.  Since they seem pretty confident that's what you're dealing with, personally I'd look for someone with the dual specialty.  Others may chime in with differing opinions. 

    Best wishes,

    Donna~

    Dont fret

    Welcome. The worst thing about cancer is the word and the fear it engenders. Its a little 'un so as Fox said, trust your doctors and you'll be fine. You will, coz we all do, but try not to sspend your every waking hour thinking about it. Its just a little lump in the road.

  • moonjell
    moonjell Member Posts: 18
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    hardo718 said:

    Specialties

    My surgeon was a Urologic/Oncologist.  Since they seem pretty confident that's what you're dealing with, personally I'd look for someone with the dual specialty.  Others may chime in with differing opinions. 

    Best wishes,

    Donna~

    specialties

    Thank you!

  • moonjell
    moonjell Member Posts: 18
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    Dont fret

    Welcome. The worst thing about cancer is the word and the fear it engenders. Its a little 'un so as Fox said, trust your doctors and you'll be fine. You will, coz we all do, but try not to sspend your every waking hour thinking about it. Its just a little lump in the road.

    fret

    Thank you, Yes it's pretty overwhelming and the internet can be a a great place to learn more or hear the worst stories.

  • medic1971
    medic1971 Member Posts: 225 Member
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    Hello there Moonjell

    Hey there Moonjell,

    Sorry you had to come here, but I am happy to hear that your mass was discovered when it was, it's what they call an incidental finding.  Kidney cancer is normally slow growing like 2-3 mm a year (10mm = 1cm).  So it's possible that you've had this for several years, and like Fox said, that's why kidney cancer can be dangerous.  I waited 4 months after my masses (2.2cm and 0.8cm) were found before I had surgery on my right kidney.  I got to kept more than 95% of my kidney after it was all said and done... 

    If you want a minimally invasive surgery I strongly recommend finding a urologist who has a lot of experience with masses on the kidney.  The American Urological Association estimates the average urologist sees six cancer and non-cancer kidney tumor cases a year.  Find someone who sees more than six a year.  I know you want this out of your body, but this is something that you can take your time and find the right doctor for you.  

    I had robotic partial nephrectomy done at MD Anderson.  Surgery last 3 hours and I spent two days in the hospital.  I stayed 4 days in a hotel room and flew back home.  I took off 6 weeks; however, I had over 500 hours of sick leave.  I could have gone back in about 2 to 3 weeks.  My primary job is at a desk.  There are many factors that influence recovery, things like age, physical fitness, and other health related issues.  But for the most part 2 to 4 weeks is the norm. 

    Recovery was not a walk in the park, but it wasn't too bad.  I used narcotic pain meds around the clock for the first 3 days and then only at night for the next couple of weeks.  Some people don't need them after they get out of the hospital.

    I found this video on YouTube and it answered a lot of my questions and gave me a lot of comfort:

    https://www.youtube.com/watch?v=NIzkLgjoE7U

    Hang in there!  You got this!

    Jason

     

  • APny
    APny Member Posts: 1,995 Member
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    medic1971 said:

    Hello there Moonjell

    Hey there Moonjell,

    Sorry you had to come here, but I am happy to hear that your mass was discovered when it was, it's what they call an incidental finding.  Kidney cancer is normally slow growing like 2-3 mm a year (10mm = 1cm).  So it's possible that you've had this for several years, and like Fox said, that's why kidney cancer can be dangerous.  I waited 4 months after my masses (2.2cm and 0.8cm) were found before I had surgery on my right kidney.  I got to kept more than 95% of my kidney after it was all said and done... 

    If you want a minimally invasive surgery I strongly recommend finding a urologist who has a lot of experience with masses on the kidney.  The American Urological Association estimates the average urologist sees six cancer and non-cancer kidney tumor cases a year.  Find someone who sees more than six a year.  I know you want this out of your body, but this is something that you can take your time and find the right doctor for you.  

    I had robotic partial nephrectomy done at MD Anderson.  Surgery last 3 hours and I spent two days in the hospital.  I stayed 4 days in a hotel room and flew back home.  I took off 6 weeks; however, I had over 500 hours of sick leave.  I could have gone back in about 2 to 3 weeks.  My primary job is at a desk.  There are many factors that influence recovery, things like age, physical fitness, and other health related issues.  But for the most part 2 to 4 weeks is the norm. 

    Recovery was not a walk in the park, but it wasn't too bad.  I used narcotic pain meds around the clock for the first 3 days and then only at night for the next couple of weeks.  Some people don't need them after they get out of the hospital.

    I found this video on YouTube and it answered a lot of my questions and gave me a lot of comfort:

    https://www.youtube.com/watch?v=NIzkLgjoE7U

    Hang in there!  You got this!

    Jason

     

    Sorry you have to be here but

    Sorry you have to be here but you'll get lots of support and advice. Mine was roughly the size of yours and I had an open partial nephrectomy. Surgery was about 1 1/2 hours max (according to my husband, I was out, lol) and by that evening I was up walking around. Not that I had a choice; they kicked me out of bed. Which is a good thing and helps you heal. I had surgery Monday morning and home Wednesday afternoon. Scar is under 5 inches, no staples, just surgi-strip on teh outside. By Thursday I was at my desk at home doing work on the computer. I walked upstairs and slept in my own bed and off pain killer in a little over a week. For an open surgery my recovery was amazingly easy. I wouldn't want to repeat it and it's not the best experience I had but my fears were a million times worse than the reality.

    Find an expert in kidney cancer and go from there. If it can be robotic, terrific, but if not, open is not as horrible as it sounds. I actually preferred it because one incision instead of five minimizes infections and scarring. Wishing you the best!

  • icemantoo
    icemantoo Member Posts: 3,361 Member
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    APny said:

    Sorry you have to be here but

    Sorry you have to be here but you'll get lots of support and advice. Mine was roughly the size of yours and I had an open partial nephrectomy. Surgery was about 1 1/2 hours max (according to my husband, I was out, lol) and by that evening I was up walking around. Not that I had a choice; they kicked me out of bed. Which is a good thing and helps you heal. I had surgery Monday morning and home Wednesday afternoon. Scar is under 5 inches, no staples, just surgi-strip on teh outside. By Thursday I was at my desk at home doing work on the computer. I walked upstairs and slept in my own bed and off pain killer in a little over a week. For an open surgery my recovery was amazingly easy. I wouldn't want to repeat it and it's not the best experience I had but my fears were a million times worse than the reality.

    Find an expert in kidney cancer and go from there. If it can be robotic, terrific, but if not, open is not as horrible as it sounds. I actually preferred it because one incision instead of five minimizes infections and scarring. Wishing you the best!

    Kidney Cancer

    moonjell,

     

    Not fun hearing that you have Cancer. And whoever heard of Kidney Cancer. And than the first thing is they want to yank out your kidney. With the size of your little bugger you are scheduled for a full and complete recovery from the neph alone. A neph of that already.

     

    Icemantoo

  • jason.2835
    jason.2835 Member Posts: 337 Member
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    Couple Things

    Moonjell,

    Welcome to the (hopefully and most likely) Stage 1 Club.  I won't try to repeat what many others have already said, but judging by the size of your tumor and the fact that you didn't have any symptoms from the mass your tumor has been found early and you are one of the lucky ones.  So try to stay positive on that.

    Also, as others have said, there's no way they can absolutely verify that a mass is malignant until it is out of your body and on the pathologist's slab.  That's because there are a number of benign masses that can look like RCC on imaging tests.  So usually urologists won't say for certain until it's out and it has been run through pathology.  Mine didn't; he just called it "suspicious for RCC" and that either way it should come out.  I believe the percentage is about 10% that it may not be cancer.  So they're not the best odds, but they're also not zero.  

    My MRI pegged the tumor at "3.8" centimeters but it must have lost weight before the surgery because once it was out it was only 2.8cm... so don't hang your hat on the imaging tests.

    Hold your head up; it's definitely not great news for any of us but once it's out you do move on.

    - Jay

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
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    Couple Things

    Moonjell,

    Welcome to the (hopefully and most likely) Stage 1 Club.  I won't try to repeat what many others have already said, but judging by the size of your tumor and the fact that you didn't have any symptoms from the mass your tumor has been found early and you are one of the lucky ones.  So try to stay positive on that.

    Also, as others have said, there's no way they can absolutely verify that a mass is malignant until it is out of your body and on the pathologist's slab.  That's because there are a number of benign masses that can look like RCC on imaging tests.  So usually urologists won't say for certain until it's out and it has been run through pathology.  Mine didn't; he just called it "suspicious for RCC" and that either way it should come out.  I believe the percentage is about 10% that it may not be cancer.  So they're not the best odds, but they're also not zero.  

    My MRI pegged the tumor at "3.8" centimeters but it must have lost weight before the surgery because once it was out it was only 2.8cm... so don't hang your hat on the imaging tests.

    Hold your head up; it's definitely not great news for any of us but once it's out you do move on.

    - Jay

    Welcome, Moonjell. It isn't

    Welcome, Moonjell. It isn't easy to hear the news you have cancer. The good news is that you are likely a stage 1 with a very high rate of survival. Once the surgery is over, it is amazing how quickly you ease back to "normal" life. Just take care of yourself, do your follow up "maintenance" and live your best life. Don't let cancer take over your fears.

    I had a 13 cm tumor removed, and was surprised at how quickly I recovered. Just pace yourself and you will sail through this. We are here for you - to calm your fears, give advice and to support each other.

    Hugs

    Jojo

  • Positive_Mental_Attitude
    Options
    I think everyone else covered

    I think everyone else covered it.  Like you, I had no symptoms.  I was getting a CT scan of my abdomen in the ER for another issue.  Tumor showed up in the CT scan.  Confirmed by second CT scan, and I was on my merry way.  Regarding reading, please don't get scared or worried about stuff you read in Google searches.  Your tumor is small, and it should be dealt with by a simple surgery.  Recovery time is not bad at all.  I had a massive stomach surgery when I was a newborn and never went to the hospital again until I had my kidney surgery in 2014.  Don't worry, you will be fine after getting over the initial shock and fear--it is completely normal.

  • moonjell
    moonjell Member Posts: 18
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    medic1971 said:

    Hello there Moonjell

    Hey there Moonjell,

    Sorry you had to come here, but I am happy to hear that your mass was discovered when it was, it's what they call an incidental finding.  Kidney cancer is normally slow growing like 2-3 mm a year (10mm = 1cm).  So it's possible that you've had this for several years, and like Fox said, that's why kidney cancer can be dangerous.  I waited 4 months after my masses (2.2cm and 0.8cm) were found before I had surgery on my right kidney.  I got to kept more than 95% of my kidney after it was all said and done... 

    If you want a minimally invasive surgery I strongly recommend finding a urologist who has a lot of experience with masses on the kidney.  The American Urological Association estimates the average urologist sees six cancer and non-cancer kidney tumor cases a year.  Find someone who sees more than six a year.  I know you want this out of your body, but this is something that you can take your time and find the right doctor for you.  

    I had robotic partial nephrectomy done at MD Anderson.  Surgery last 3 hours and I spent two days in the hospital.  I stayed 4 days in a hotel room and flew back home.  I took off 6 weeks; however, I had over 500 hours of sick leave.  I could have gone back in about 2 to 3 weeks.  My primary job is at a desk.  There are many factors that influence recovery, things like age, physical fitness, and other health related issues.  But for the most part 2 to 4 weeks is the norm. 

    Recovery was not a walk in the park, but it wasn't too bad.  I used narcotic pain meds around the clock for the first 3 days and then only at night for the next couple of weeks.  Some people don't need them after they get out of the hospital.

    I found this video on YouTube and it answered a lot of my questions and gave me a lot of comfort:

    https://www.youtube.com/watch?v=NIzkLgjoE7U

    Hang in there!  You got this!

    Jason

     

    thank you

    Thank you for the information and support.

  • moonjell
    moonjell Member Posts: 18
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    I think everyone else covered

    I think everyone else covered it.  Like you, I had no symptoms.  I was getting a CT scan of my abdomen in the ER for another issue.  Tumor showed up in the CT scan.  Confirmed by second CT scan, and I was on my merry way.  Regarding reading, please don't get scared or worried about stuff you read in Google searches.  Your tumor is small, and it should be dealt with by a simple surgery.  Recovery time is not bad at all.  I had a massive stomach surgery when I was a newborn and never went to the hospital again until I had my kidney surgery in 2014.  Don't worry, you will be fine after getting over the initial shock and fear--it is completely normal.

    very helpful

    Thank you everyone.

    this is all very helpful and is helping ease my mind a little. I will let you know what the urologist says. I've also contacted MD Anderson for a second opinion. I can drive there if needed.

     

  • foxhd
    foxhd Member Posts: 3,181 Member
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    moonjell said:

    very helpful

    Thank you everyone.

    this is all very helpful and is helping ease my mind a little. I will let you know what the urologist says. I've also contacted MD Anderson for a second opinion. I can drive there if needed.

     

    MD Anderson

    Enjoy your ride. It's too bad not everyone can just hop in the car to go to MDA. Take advantage of it.

  • moonjell
    moonjell Member Posts: 18
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    foxhd said:

    MD Anderson

    Enjoy your ride. It's too bad not everyone can just hop in the car to go to MDA. Take advantage of it.

    MD Anderson

    If my insurance will cover it I most certainly will  make the drive down there.

  • moonjell
    moonjell Member Posts: 18
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    surgery date

    I have my surgery date. Turns out the mass is a little larger than we thought. It's actually 4.2 CM and is located on the bottom of the kidney on the outside. I will have a robotic assisted partial and should get to retain about 75% of my kidney. There is currently no evidence that it has spread to other organs.

  • hardo718
    hardo718 Member Posts: 853 Member
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    moonjell said:

    surgery date

    I have my surgery date. Turns out the mass is a little larger than we thought. It's actually 4.2 CM and is located on the bottom of the kidney on the outside. I will have a robotic assisted partial and should get to retain about 75% of my kidney. There is currently no evidence that it has spread to other organs.

    That's good news...

    ....not that it's slightly bigger, but the other details you gave.  When is your surgery?

    Blessed Be,

    Donna~