Possible RCC with upcoming surgery

pinkstar
pinkstar Member Posts: 53

Hello,

I am a 40 year old woman who is new to this site and I sincerely appreciate any feedback. In 2010 I had an abdominal ultrasound, as a requirement for the Lap Band procedure (later decided against the surgery). 3 months after the procedure, I received a letter stating that they found a suspicious mass on my left kidney & suggested that I see my regular Dr. So, I went to my Dr and he stated they found a 2.6 cm solid mass on my left kidney & wanted an MRI to confirm. Needless to say, my world was devastated. A little history...I lost 3 family members to pancreatic cancer, 1 to lung cancer, 1 to bone cancer and this is all from my mothers side. Cancer does not run on my biological fathers side (don't know much about this side) but I do know he had a kidney removed in the 60's, before he met my mother. I have asked my fathers side of the family if anyone knew why it was removed but no one knows. He died in 2009 from complications of congested heart failure. My labs (creatinine, GFR & BUN) have always been normal. I have never had pain or any health issues other than being a type 2 diabetic (well controlled with diet, activity & metformin). My Dr referred me to a Urologist who explained to me the necessity of a partial nephrectomy with assistance of the Divinci Robot. He was confident that the mass resembled RCC. I explained to him that I never once felt that I had RCC and I fought it every step of the way (STILL DO =0). I had another MRI done right before my pre-op appt and I heard the Dr talking outside my door. I heard him telling another Dr that he has never seen anything like this. He comes into my room then asks me to follow him to his computer. He showed me the actual MRI film and asked what I saw (I have been in the medical field for over 20 years & I was a recent LVN graduate). I told him that the mass was indeed solid but perfect in shape. It didn't look ugly or have what I know to be, cancer characteristics. The Urologist said that he didn't feel that I needed the surgery ASAP & we agreed to wait 6 months to do a repeat CT scan. 6 months later I had the CT scan and the mass was the same size 2.6cm. Shortly after this, my insurance benefits ran out. Fast forward 1 1/2 years later & I got sick with diverticulitis. I was in the hospital for 3 days cause of the mass but at the time I didn't know. Not once did a Dr talk to me about it & I was in so much pain that I wasn't thinking. After I went home, I went back to the hospital for a copy of my medical records. I saw that the mass grew to 4.4cm with no mestasis, not doing anything but growing then sitting there & sometimes not even growing. This was a county facility and they never mentioned doing surgery or anything about it. Now that I do have insurance & a Urologist, he has recommended a total removal of my left kidney. He has said that he does feel that I have RCC (according to his experience) and feels positive of my outcome. We are hoping to do the surgery 5/2013. Now that I feel that I have said it all =0), I would appreciate any words of advice. Yes, I am a working nurse (also in school pursuing my RN) but this is not my field of expertise. I have my moments of saddness but mostly I have feelings of fear for my future. I feel this isn't RCC but something in which has to do with my biological father. I have done so much research & honestly, this is the absolute BEST resource out there for support.

Thank you & may god bless all of us. Keep the hope, keep the faith & always keep the dream alive.

Donna

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Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    Upcoming surgery

    Donna, welcome here - yes it is a very good support facility.

    You're a good story teller and have introduced an element of mystery too.  Do you care to say what you fear the lesion may be and why you connect it with your biological Father?  For most people the idea that it is cancer is scary enough and they wouldn't imagine anything else could be scarier!

    Why are you so convinced that you don't have RCC?  It's frequently asymptomatic, as you doubtless know.

    If it continues to grow it will be a major inconvenience at some stage, even if it's benign, so having it removed makes good sense and then you'll know for sure what it is.   With luck, it's benign and you can forget all about us here (though you may want to consult a bit about recovery from major abdominal surgery) and get on with your carrer and your studies.

  • pinkstar
    pinkstar Member Posts: 53

    Upcoming surgery

    Donna, welcome here - yes it is a very good support facility.

    You're a good story teller and have introduced an element of mystery too.  Do you care to say what you fear the lesion may be and why you connect it with your biological Father?  For most people the idea that it is cancer is scary enough and they wouldn't imagine anything else could be scarier!

    Why are you so convinced that you don't have RCC?  It's frequently asymptomatic, as you doubtless know.

    If it continues to grow it will be a major inconvenience at some stage, even if it's benign, so having it removed makes good sense and then you'll know for sure what it is.   With luck, it's benign and you can forget all about us here (though you may want to consult a bit about recovery from major abdominal surgery) and get on with your carrer and your studies.

    Thank you Texas!!! I think my

    Thank you Texas!!! I think my back ground forces me to tell it all. hahaha...I am honest & I have nothing to hide. Although, this is probably what makes me a good nurse. I fear the lesion may be RCC, which if it is I would be considered stage 1b (if my memory serves me correctly). I am connecting this experience with my biological father as we were nearly the same age at the time of surgery (he had his done in his early 30's & I found this in my late 30's). Health wise, I tend to take more after him than my mother (THANK GOD). I have always said, he may not have been the father he should have been but he definitely could be what saves my life.

    With all the physical research I have done on RCC, I don't believe I have it. Could be denial but I call it surviving.

    I totally agree with you 100%!!! Regardless of it's nature, it needs to be removed. This whole thing is just weird & somewhat of may be a medical mystery but I am grateful for this site. If this experience makes me a better woman, daughter, sister, friend & nurse then I am indeed the winner. No matter what the mass is I will remain on this site, if just to offer support.

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

    Thank you Texas!!! I think my

    Thank you Texas!!! I think my back ground forces me to tell it all. hahaha...I am honest & I have nothing to hide. Although, this is probably what makes me a good nurse. I fear the lesion may be RCC, which if it is I would be considered stage 1b (if my memory serves me correctly). I am connecting this experience with my biological father as we were nearly the same age at the time of surgery (he had his done in his early 30's & I found this in my late 30's). Health wise, I tend to take more after him than my mother (THANK GOD). I have always said, he may not have been the father he should have been but he definitely could be what saves my life.

    With all the physical research I have done on RCC, I don't believe I have it. Could be denial but I call it surviving.

    I totally agree with you 100%!!! Regardless of it's nature, it needs to be removed. This whole thing is just weird & somewhat of may be a medical mystery but I am grateful for this site. If this experience makes me a better woman, daughter, sister, friend & nurse then I am indeed the winner. No matter what the mass is I will remain on this site, if just to offer support.

    Doubts

    Donna,

     

    While a number of persons have come on this site with doubt whether the little buggar was RCC or not, it turns out that it usually is although I do remember the exception. With some types of tumors they are or will become RCC. RCC sucks. If it gets bigger and spreads you face serious consequences. If it is taken out while it is small the surgery is usually a total cure. All of us on this board have had the surgery. Not fun, but it beats the alternative.

    What a way to get extra insight as part of your RN training.

     

    Icemantoo

     

  • pinkstar
    pinkstar Member Posts: 53
    icemantoo said:

    Doubts

    Donna,

     

    While a number of persons have come on this site with doubt whether the little buggar was RCC or not, it turns out that it usually is although I do remember the exception. With some types of tumors they are or will become RCC. RCC sucks. If it gets bigger and spreads you face serious consequences. If it is taken out while it is small the surgery is usually a total cure. All of us on this board have had the surgery. Not fun, but it beats the alternative.

    What a way to get extra insight as part of your RN training.

     

    Icemantoo

     

    Thank you!

    Thank you, Icemantoo! I am forced to wait till May for surgery as I just started a new job & praying I make it till my probation is over (end of April). I am lucky enough that my health insurance kicked in 30 days after I started. I am hoping & praying every day that it has not grown or metastasized. At the last CT scan, it was in the middle of my kidney & just sitting there not doing anything. Which is why my current Urologist has recommended a total nephrectomy, rather than a partial. We are also planning on it being done laparoscopically, rather than open. I have come to the realization that the surgery is very necessary & I am comfortable with the total removal of my left kidney. Not so sure of what the mass is made of but I know I will survive this just as I have survived everything else.  =0) 

  • pinkstar
    pinkstar Member Posts: 53
    icemantoo said:

    Doubts

    Donna,

     

    While a number of persons have come on this site with doubt whether the little buggar was RCC or not, it turns out that it usually is although I do remember the exception. With some types of tumors they are or will become RCC. RCC sucks. If it gets bigger and spreads you face serious consequences. If it is taken out while it is small the surgery is usually a total cure. All of us on this board have had the surgery. Not fun, but it beats the alternative.

    What a way to get extra insight as part of your RN training.

     

    Icemantoo

     

    Thank you!

    Sorry for the duplicate post. I don't know how to delete just yet.  =0)

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    pinkstar said:

    Thank you!

    Sorry for the duplicate post. I don't know how to delete just yet.  =0)

    Duplicate

    Dere ain't no way, lady, and we all do it; so just don't worry about it - you won't be thrown out of our Club for it!

  • Limelife50
    Limelife50 Member Posts: 476
    pinkstar said:

    Thank you!

    Sorry for the duplicate post. I don't know how to delete just yet.  =0)

    Could Have Should Have

    Hi Donna well i guess everyone procrastinated and that tumor is not getting any smaller,SO GET IT OUT!!!,with that said you should be fine,oh almost forgot WELCOME to this fine discssion board

  • foxhd
    foxhd Member Posts: 3,181 Member

    Could Have Should Have

    Hi Donna well i guess everyone procrastinated and that tumor is not getting any smaller,SO GET IT OUT!!!,with that said you should be fine,oh almost forgot WELCOME to this fine discssion board

    Welcome Donna

    I know one problem you have. Because you are a nurse, you are not prepared to be a patient. It is hard for a health care giver to switch roles. Ask me. You will get through this decision making time and do the right thing. Sorry about your up coming surgery but it is always best to be done as early as possible. Delay only makes it worse. Good luck.

  • pinkstar
    pinkstar Member Posts: 53

    Could Have Should Have

    Hi Donna well i guess everyone procrastinated and that tumor is not getting any smaller,SO GET IT OUT!!!,with that said you should be fine,oh almost forgot WELCOME to this fine discssion board

    Could have should have

    Hi,

    Thank you! Yes, we procrastinated cause it didn't grow for a period of time. Also, my health insurance ran out at that time. I had absolutely no choice. I have suffered with this in my thoughts & it's been hard especially considering that I have wanted it out of my body since I knew it was there.

  • pinkstar
    pinkstar Member Posts: 53

    Could Have Should Have

    Hi Donna well i guess everyone procrastinated and that tumor is not getting any smaller,SO GET IT OUT!!!,with that said you should be fine,oh almost forgot WELCOME to this fine discssion board

    Could have should have

    Hi,

    Thank you! Yes, we procrastinated cause it didn't grow for a period of time. Also, my health insurance ran out at that time. I had absolutely no choice. I have suffered with this in my thoughts & it's been hard especially considering that I have wanted it out of my body since I knew it was there.

  • pinkstar
    pinkstar Member Posts: 53

    Could Have Should Have

    Hi Donna well i guess everyone procrastinated and that tumor is not getting any smaller,SO GET IT OUT!!!,with that said you should be fine,oh almost forgot WELCOME to this fine discssion board

    Welcome Donna

    Hi,

    Thank you! I agree. LOL...I am ok with the surgery aspect & my Urologist expects to keep me out of work for 2 weeks. I was like that's it? haha...He said that was all he expected me to need, as I am healthy other than for the mass. So we shall see.

  • pinkstar
    pinkstar Member Posts: 53
    pinkstar said:

    Welcome Donna

    Hi,

    Thank you! I agree. LOL...I am ok with the surgery aspect & my Urologist expects to keep me out of work for 2 weeks. I was like that's it? haha...He said that was all he expected me to need, as I am healthy other than for the mass. So we shall see.

    3 times!!!

    HA! How do I delete the multiple post?

  • todd121
    todd121 Member Posts: 1,448 Member
    pinkstar said:

    Welcome Donna

    Hi,

    Thank you! I agree. LOL...I am ok with the surgery aspect & my Urologist expects to keep me out of work for 2 weeks. I was like that's it? haha...He said that was all he expected me to need, as I am healthy other than for the mass. So we shall see.

    Hi and Welcome

    Hi Donna,

    Sorry you've had to come here. I was in a similar situation to you in early December. The mass in my kidney was 6.8 cm and in the center of my right kidney. They removed my right kidney December 10th. Being asymptomatic is not unusual. If the tumor is a long way from the collection area of the kidney, you might not even have bleeding. From what I've read, these tumors are near 90% clear cell RCC. They are benign in something around 5%. That's probably why your urologist is pretty sure that's what it is. If it's not a cyst, and it's not a benign tumor that is able to be seen on the CT, then it's probably RCC and probably clear cell. However, they aren't going to know what it is until they get it out and send it to a pathologist for a report. Hopefully it will be some kind of benign thing.

    Mine turned out to be clear cell RCC, stage 3, grade 3. I was hoping for stage 1, but my tumor had grown into the veins so that bumpted the stage from 1 to 3, which I didn't find out until the pathology report came in.

    Are you seeing urologic oncologist? Or a general urologist? I'm assuming he's a urologic oncologist if he's doing the surgery via laparascopy.

    Personally I think the 2 weeks back to work is a ridiculous idea after a radical nephrectomy, especially if you need to move around a lot on your job. I took 6 weeks off and was glad I did. I probably could have gone back to work after 4, but I was glad to have time to focus on getting better. I was also glad to get back to work.

    Hope you'll stick around and keep us updated on how you are doing.

    If you are interested in boning up on kidney type issues in general, my surgeon has a great website going over all the issues in a very condensed manner. Check it out. It's very up-to-date, very informative, and also very condensed, http://www.kidneycancerinstitute.com/

    Best wishes to you,

    Todd

  • dhs1963
    dhs1963 Member Posts: 513
    pinkstar said:

    Thank you Texas!!! I think my

    Thank you Texas!!! I think my back ground forces me to tell it all. hahaha...I am honest & I have nothing to hide. Although, this is probably what makes me a good nurse. I fear the lesion may be RCC, which if it is I would be considered stage 1b (if my memory serves me correctly). I am connecting this experience with my biological father as we were nearly the same age at the time of surgery (he had his done in his early 30's & I found this in my late 30's). Health wise, I tend to take more after him than my mother (THANK GOD). I have always said, he may not have been the father he should have been but he definitely could be what saves my life.

    With all the physical research I have done on RCC, I don't believe I have it. Could be denial but I call it surviving.

    I totally agree with you 100%!!! Regardless of it's nature, it needs to be removed. This whole thing is just weird & somewhat of may be a medical mystery but I am grateful for this site. If this experience makes me a better woman, daughter, sister, friend & nurse then I am indeed the winner. No matter what the mass is I will remain on this site, if just to offer support.

    I probably is RCC

    You could get it biopsied, but statstically, it is 90% likely it is RCC.  My tumor, 6x5x5, was both acressive (grade for because Sarcomotoid) and symptom free.  Unfortunately mine metastisized to my lung; the met may have been before or after the surgery. 

    RCC is usually symptom free in stage 1.  The real danger of RCC is that by the time there are symptoms, the cancer is much more advanced with a much worse prognosis.  With a stage 1B tumor, odds are you will be cured from surgery.

  • GSRon
    GSRon Member Posts: 1,303 Member
    dhs1963 said:

    I probably is RCC

    You could get it biopsied, but statstically, it is 90% likely it is RCC.  My tumor, 6x5x5, was both acressive (grade for because Sarcomotoid) and symptom free.  Unfortunately mine metastisized to my lung; the met may have been before or after the surgery. 

    RCC is usually symptom free in stage 1.  The real danger of RCC is that by the time there are symptoms, the cancer is much more advanced with a much worse prognosis.  With a stage 1B tumor, odds are you will be cured from surgery.

    Slow growing

    Keep in mind that RCC is usually very slow growing... so in 6 months time a "normaL' scan (no contrast) may or may not be able to measure the growth.. but.. as you now know, it IS growing..  I must tell you, for me, the surgery was pretty easy overall... the fear was far worse than the reality...  I had pain for a few days that was controlled by the drugs, and it lessened a lot faster than I had imagined... down to Tylenol in about 2 weeks.. then nothing... Hang in there..

    Ron

  • pinkstar
    pinkstar Member Posts: 53
    todd121 said:

    Hi and Welcome

    Hi Donna,

    Sorry you've had to come here. I was in a similar situation to you in early December. The mass in my kidney was 6.8 cm and in the center of my right kidney. They removed my right kidney December 10th. Being asymptomatic is not unusual. If the tumor is a long way from the collection area of the kidney, you might not even have bleeding. From what I've read, these tumors are near 90% clear cell RCC. They are benign in something around 5%. That's probably why your urologist is pretty sure that's what it is. If it's not a cyst, and it's not a benign tumor that is able to be seen on the CT, then it's probably RCC and probably clear cell. However, they aren't going to know what it is until they get it out and send it to a pathologist for a report. Hopefully it will be some kind of benign thing.

    Mine turned out to be clear cell RCC, stage 3, grade 3. I was hoping for stage 1, but my tumor had grown into the veins so that bumpted the stage from 1 to 3, which I didn't find out until the pathology report came in.

    Are you seeing urologic oncologist? Or a general urologist? I'm assuming he's a urologic oncologist if he's doing the surgery via laparascopy.

    Personally I think the 2 weeks back to work is a ridiculous idea after a radical nephrectomy, especially if you need to move around a lot on your job. I took 6 weeks off and was glad I did. I probably could have gone back to work after 4, but I was glad to have time to focus on getting better. I was also glad to get back to work.

    Hope you'll stick around and keep us updated on how you are doing.

    If you are interested in boning up on kidney type issues in general, my surgeon has a great website going over all the issues in a very condensed manner. Check it out. It's very up-to-date, very informative, and also very condensed, http://www.kidneycancerinstitute.com/

    Best wishes to you,

    Todd

    Thank you Todd!

    I definitely plan on sticking around & yes, I am very much aware that masses in the kidney are 80% of the time RCC. The coincidence is with my biological father's kidney removal. I wish I knew more but I will never know. To 3 Urologists the mass is similar to RCC but when it didn't grow, 1 Urologist said he felt it wasn't. Who knows? I sure don't. All I know is I will beat whatever is. They won't be doing any sort of biopsy, so no news till surgery & a pathology report is done.

    Thank you for your reply.

    Donna

  • pinkstar
    pinkstar Member Posts: 53
    dhs1963 said:

    I probably is RCC

    You could get it biopsied, but statstically, it is 90% likely it is RCC.  My tumor, 6x5x5, was both acressive (grade for because Sarcomotoid) and symptom free.  Unfortunately mine metastisized to my lung; the met may have been before or after the surgery. 

    RCC is usually symptom free in stage 1.  The real danger of RCC is that by the time there are symptoms, the cancer is much more advanced with a much worse prognosis.  With a stage 1B tumor, odds are you will be cured from surgery.

    Thank you dhs

    I know I am lucky for many reasons and I am sorry your's has metastisized. I have nothing anywhere else & I don't plan on it. No matter what, we have to remain hopeful & positive. Especially when it gets tough! According to the MRI's & CT scans that I've had, there is no vein or other involvement.

  • pinkstar
    pinkstar Member Posts: 53
    GSRon said:

    Slow growing

    Keep in mind that RCC is usually very slow growing... so in 6 months time a "normaL' scan (no contrast) may or may not be able to measure the growth.. but.. as you now know, it IS growing..  I must tell you, for me, the surgery was pretty easy overall... the fear was far worse than the reality...  I had pain for a few days that was controlled by the drugs, and it lessened a lot faster than I had imagined... down to Tylenol in about 2 weeks.. then nothing... Hang in there..

    Ron

    GSRon

    Yes, I understand that it is slow growing. I feel lucky regardless. I am praying for no growth since 8/12 & no mestastistizing or anything else. I feel good, so I am rolling with that.

    Wow...sounds like you had a perfect recovery. I can only hope for the same.

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

    Thank you dhs

    I know I am lucky for many reasons and I am sorry your's has metastisized. I have nothing anywhere else & I don't plan on it. No matter what, we have to remain hopeful & positive. Especially when it gets tough! According to the MRI's & CT scans that I've had, there is no vein or other involvement.

    pre op planning

    Sometimes I keep the simplistic approach. When I figure that it doesn't matter exactly what the specifics are of the tumor are, I also figure there is nothing I can do about it. So, I begin the post op planning.Find time for a little more exercise and endurance training. I have a theory (sp?) that goes like this.....Most strength and conditioning training is about building muscle and cardio vascular endurance. That is why so many people give up on exercise after missing a few sessions. After a short break, what was gained is quickly lost. So many people say screw it. I believe that what should be concentrated on during workouts is the technique and skill associated with the activities. Sort of like learning to play the guitar or something similar. Then even after short breaks, as you return to the activity, the skill may be rusty, but intact. With a bit of practice, you can return to form in a relatively short period of time. So whether it be yoga, jogging, or  weight training begin your preparation for your recovery now. Your body will have  it's memory of how it should be. This shortens the process considerably....just a thought....or a rambling. ..or the percocet talking.

  • NanoSecond
    NanoSecond Member Posts: 653
    foxhd said:

    pre op planning

    Sometimes I keep the simplistic approach. When I figure that it doesn't matter exactly what the specifics are of the tumor are, I also figure there is nothing I can do about it. So, I begin the post op planning.Find time for a little more exercise and endurance training. I have a theory (sp?) that goes like this.....Most strength and conditioning training is about building muscle and cardio vascular endurance. That is why so many people give up on exercise after missing a few sessions. After a short break, what was gained is quickly lost. So many people say screw it. I believe that what should be concentrated on during workouts is the technique and skill associated with the activities. Sort of like learning to play the guitar or something similar. Then even after short breaks, as you return to the activity, the skill may be rusty, but intact. With a bit of practice, you can return to form in a relatively short period of time. So whether it be yoga, jogging, or  weight training begin your preparation for your recovery now. Your body will have  it's memory of how it should be. This shortens the process considerably....just a thought....or a rambling. ..or the percocet talking.

    Strength Training

    Hi Fox,

    I think what you say makes a lot of sense.  And I ran out of my Percocet perscription months ago. :)

    But have you any advice for those of us (me) who intellectually realize the importance of strength or conditioning training but just can't motivate themselves to start in the first place (let alone keep at it)?

    Thanks for any thoughts on this.