An incidental finding=RCC

beemurguia
beemurguia Member Posts: 57

I just found out that I have RCC.  I originally hurt my lower back by lifting a heavy object.  I began to experience pain in my abdomen, mainly left side of abdomen to the rib cage. Although the pain was along the left side the CT scan did not show muscle tear or any anomoly in that area but a 7cm size tumor at my right kidney. These type of situations are called "incidental finding"...funny....Im calling it a blessing in disguise.  

My Urologist recommends radical nephrectomy. Im still processing the information and also trying to keep a positive mind set but do have to admit feeling very scared.  I have two small children and an amazing husband.  I cant fanthom the idea of this disease taking a turn and wreaking havoc.  I have only had one formal Dr. visit, the day i got the diagnosis, and he seemed very optimistic and certain that it is contained in the kidney only.  My chest x-ray looks clear.  Although this diagnostic image is promising cant help but wonder if any microscopic cancerous cells are floating around about to take up residence elsewhere.  This is the first time in the last 2 weeks that I vocalize this worry.  I figured this would be an appropriate forum to do so.  I am trying to be positive and optimistic around my family for their sake and for mine as well but negative nancy tends to rear her head from time to time. Embarassed

I look forward to reading other members experiences.  Im scheduled for kidney removal until 5/9/17.  No earlier dates available. Ive learned a lot about "staging" and now can ask more pertinent questions when I meet with my doctor again.

Is RCC considered in situ when its size warrants a radical nephrectomy?

Major lifestyle changes knocking at my door.  Have to ease the stress on my soon to be solo-kidney!

 

 

 

 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    Welcome again

    bee,

    At 7cm a radical nepherectomy is almost a given. Seven cm is also the division between Stage 1 and Stage 2. The exact size and pathology will not be determined until after surgery. There are members here with larger tumors who have had no problems since surgery and they will chime in. Mine was a little larger than 4 cm and so far so good with almost 15 years behind me. The surgery is not fun, but you should have it easier than me as you are a bit younger. The only uncertain part of your surgery will be whether it is laproscopic or open and there are a lot of factors that go into that decision such as location of the tumor. Sometimes they start with a lap and make a game time decision to go open. Get some help lined up  to handle the young ones for the first few weeks after surgery. We all went thru the not so fun time when we were told we had Kidney Cancer and the first thing we were told is that they want to yank out your kidney. That feeling will subside over time. It took me almost 11 months after surgery to get back up on water skis. No roller coasters this simmer.

     

     

    Icemantoo

  • Steve.Adam
    Steve.Adam Member Posts: 463
    Hi Bee

    You picked the perfect forum to talk about nephrectomies. Everyone here has a special interest.

    If you browse through the message topics for the past few weeks or months you will find lots of questions and answers, many of which will be relevant to you.

    My radical right nephrectomy was on February 6th. I'll be having some blood tests in a week and then I'll be able to tell you my kidney function 8 weeks out.

    Anyway... Welcome to you and Nancy too.

    Steve.

     

  • Bay Area Guy
    Bay Area Guy Member Posts: 559 Member
    edited March 2017 #4
    I have to admire your

    I have to admire your attitude about this, calling it a blessing, but, you are absolutely right.  Your tumor was discovered at a time when it can still be treated relatively easy and you should have no problems going forward.

    I'm nine months out from having a baby lesion (1.8cm) taken out in a robotic assisted partial, so my surgical experience isn't really pertinent to your situation.  But I do recall my initial attitude when finding out about the diagnosis was no where near as good as yours.  Had I had hair, I would have been running around pulling it out in the first few hours.  Fortunately for me, my sister is a nurse practitioner (in a different field), so she was able to explain a lot of things to me and calm me way down.

    Best wishes for an uneventful surgery and a full recovery.

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    They called mine "baseball" sized.

    Bee,  Mine was 7x5 cm and after removal they referred to it as baseball sized lol.  They catagorized me as stage 1B.  So far NED now since removal in October 2013.   Good luck! You will like the folks here though I am sure there are other places you would like to be. 

    Jack C

  • beemurguia
    beemurguia Member Posts: 57
    edited March 2017 #6
    icemantoo said:

    Welcome again

    bee,

    At 7cm a radical nepherectomy is almost a given. Seven cm is also the division between Stage 1 and Stage 2. The exact size and pathology will not be determined until after surgery. There are members here with larger tumors who have had no problems since surgery and they will chime in. Mine was a little larger than 4 cm and so far so good with almost 15 years behind me. The surgery is not fun, but you should have it easier than me as you are a bit younger. The only uncertain part of your surgery will be whether it is laproscopic or open and there are a lot of factors that go into that decision such as location of the tumor. Sometimes they start with a lap and make a game time decision to go open. Get some help lined up  to handle the young ones for the first few weeks after surgery. We all went thru the not so fun time when we were told we had Kidney Cancer and the first thing we were told is that they want to yank out your kidney. That feeling will subside over time. It took me almost 11 months after surgery to get back up on water skis. No roller coasters this simmer.

     

     

    Icemantoo

    Hello icemantoo!!!

    Hello icemantoo!!!

    Thank you for wonderful feedback.  I am very happy that you have had such a promising prognosis and back on water skis? good for you! Hopefully roller coasters soon! Thanks for the suggestion of lining up help with my boys.....I may be underestimating the healing and recovery time...I better prepare and have all my bases covered!

     

  • beemurguia
    beemurguia Member Posts: 57

    Hi Bee

    You picked the perfect forum to talk about nephrectomies. Everyone here has a special interest.

    If you browse through the message topics for the past few weeks or months you will find lots of questions and answers, many of which will be relevant to you.

    My radical right nephrectomy was on February 6th. I'll be having some blood tests in a week and then I'll be able to tell you my kidney function 8 weeks out.

    Anyway... Welcome to you and Nancy too.

    Steve.

     

    Hello there Steve,

    Hello there Steve,

    Yes, I have already learned a lot just from reading many posts and I feel very conforted arminng myself with knowledge and peoples personal experiences.  So do you feel like your back to your usual or still recovering physically? How often do you have to go for follow up exams? I hope you have good results at your next blood evaluation!

    Thanks for taking the time to welcome me to the group.  I hope to offer relevant information once I get through my phase of treatment!

    Cheers!

    Bee

  • beemurguia
    beemurguia Member Posts: 57
    edited March 2017 #8

    I have to admire your

    I have to admire your attitude about this, calling it a blessing, but, you are absolutely right.  Your tumor was discovered at a time when it can still be treated relatively easy and you should have no problems going forward.

    I'm nine months out from having a baby lesion (1.8cm) taken out in a robotic assisted partial, so my surgical experience isn't really pertinent to your situation.  But I do recall my initial attitude when finding out about the diagnosis was no where near as good as yours.  Had I had hair, I would have been running around pulling it out in the first few hours.  Fortunately for me, my sister is a nurse practitioner (in a different field), so she was able to explain a lot of things to me and calm me way down.

    Best wishes for an uneventful surgery and a full recovery.

    Hey there Bay area guy...Im

    Hey there Bay area guy...Im from the Bay area too! and although I may not be pullig my hair out I sure have thinned out my eyebrows..thats my nervous tick...I get stressed and there I go plucking away  without realizing it....lol...Well I dont think this Cancer situation is a blessing because its such a nasty, terrible, weird body glitch....but me hurting my back at work was the blessing which led to the discovery of cancer.  Apparently by the time people find out its much more evolved.  How did you find out you had kidney cancer? I wish you continued good health and look forward to your response!

    P. S. Looks like a small part of the Bay Bridge left...Just noticed today as I went in the visit family.

    Cheers,

    Bee

  • beemurguia
    beemurguia Member Posts: 57
    edited March 2017 #9

    They called mine "baseball" sized.

    Bee,  Mine was 7x5 cm and after removal they referred to it as baseball sized lol.  They catagorized me as stage 1B.  So far NED now since removal in October 2013.   Good luck! You will like the folks here though I am sure there are other places you would like to be. 

    Jack C

    Wow! Sounds like mine may be

    Wow! Sounds like mine may be a baseball sized one too! Did you experience pain prior to removal of it? I am comforted in knowing that you are doing well since your treatment.  That is awesome! 

    I strongly believe that every situation or curve ball we are dealt with is an opportunity to learn and grow from.  I can assure you that I can hear every bird chirp around me and I can smell every dog gone flower around me.....suddenly the little things seem to be more relevant now.  Im grateful for the people here and their openess and honesty about their struggle and process! 

    cheers!

    -Bee

  • Steve.Adam
    Steve.Adam Member Posts: 463
    edited March 2017 #10

    Hello there Steve,

    Hello there Steve,

    Yes, I have already learned a lot just from reading many posts and I feel very conforted arminng myself with knowledge and peoples personal experiences.  So do you feel like your back to your usual or still recovering physically? How often do you have to go for follow up exams? I hope you have good results at your next blood evaluation!

    Thanks for taking the time to welcome me to the group.  I hope to offer relevant information once I get through my phase of treatment!

    Cheers!

    Bee

    Hi again Bee

    Yes, I feel pretty much back to normal. I am still being careful about lifting etc., but everything else is fine. My energy levels are ok. No pain, no discomfort. I do feel something a little different inside when I take a deep breath.

    I haven't yet had any follow up visits to the Urologists, just to my local doc to get my staples out.

    Now that it is all done I feel like a character in a story that I just finished reading.

    Actually I felt a bit like that before the surgery. I was the star of my own (medical) reality show.

    That feeling probably helped me to put some distance between me and the events I was living/acting/watching.

    What will the next chapter bring? 

    Steve.

     

     

  • BoondockSaint
    BoondockSaint Member Posts: 242
    edited March 2017 #11
    Hi Bee. Please read my post

    Hi Bee. Please read my post from a few weeks back. My wife's tumor was found in a similar fashion. Today is 19 days post surgery and she is doing great. incision scars are healing well. She feels probably back to about 80%. Fatigue is her big nemesis right now but that's even getting better. She has a stray random pain from time to time and a little pain in her kidney area of her back but it usually subsides quickly.

    we had a great weekend and got out and enjoyed the nice spring weather. You're gonna do well. This is a great place. 

    Big hugs.

    Boondock out!!

  • stub1969
    stub1969 Member Posts: 954 Member
    edited March 2017 #12
    Welcome, Bee

    I'm glad you found this site.  I've said it before and I'm sure I'll say it many times in the future....this site is a wonderful place.  The members will reach out and support you and offer their stories and experiences to help.  I'm just over 6 months post-surgery and doing well.  I've been back to running and exercising without issues at 3 months post-surgery. 

    Can I ask where you are being treated?  Do you know if your doctor specializes in RCC?  I ask because it seems odd that surgery is out over a month for you.  As Iceman said 7cm is the right on the line of a stage 1 and 2.  Surgery for me was a couple weeks after I met with the urologist.  My intent is not to add to your anxiety, I'm just curious.

    Take care,

    Stub

  • marosa
    marosa Member Posts: 333
    Hi Bee!

    You have such a positive attitude!  That is fantastic and it will carry you a long way, hang in there, you will be fine!  I too had a pretty long wait, a little over 5 weeks from the time of diagnosis.  My tumor was almost the size of yours but I, like Steve, had an artery leak hours after the surgery. In my case it went with the  risk of going with a partial at that tumor size.  

    It looks like you will pass thru this with flying colors!  Keep up your positive attitude and your spark for life!  It will do wonders for you and we will definitely profit from it too!  May this few weeks go by fast for you.

  • pamstayner
    pamstayner Member Posts: 111
    Hello Bee

    Glad you found us.  We are all in the same boat, bailing out the leaks, and rowing the best we can.  

    If you have two young kids, who are not at the help out with the wash and dishes or meals... yes, you better get help lined up.  

    A radical neph means a good sized incision, lots of inards getting pushed and shoved around to get to the back kidney area.  You will be told not to lift anything heavy... like over 5 lbs.  Be aware, as a mom of two young ones, your purse probably weighs more than 5 lbs... so wake up girl !  It is major surgery.  You will have to take time to let your body get over the shock !  Makes me smile, glad you have an amazing husband.  He better start the transformation now, as a working Mom, you likely believe you are supermom... and this kidney tumor removal will be your kryptoenite.. or however it is spelled.  

    Jan 4 you has advice for the tummy swelling and a binder that works wonders.  Use it.  The hardest thing getting used to after the surgery was asking for help.. something I had not ever done before. It was hard.  If your husband will get other family and friends to organize a dinner delivery to your house, and perhaps someone to come in to keep the wash and housework under control, at least for a few weeks after you come home.  Let everyone help who say they want to.... make a list, and have them take a task.  

    You will get over the tired fatigue, the soreness, the inability to sleep.  Do not think the "no pain, no gain" montra...  it is stupid in this day and age.

    You will be fine. The best thing to do is get well.  Then you will be able to take charge again, and keep your house together.  This cancer is a BIG DEAL.  Your attitude of finding this, and dealing with what may come down the road is good, and will help you tremendously.  Keep a sense of humor, know that the whole lot of us here have your back, and keep us up to date on your progress.

    We care.  We are glad you found this site.  Others will chime in I am sure, with good advice .... all from personal experiences.  Good luck

    Pam

     

  • Bay Area Guy
    Bay Area Guy Member Posts: 559 Member

    Hey there Bay area guy...Im

    Hey there Bay area guy...Im from the Bay area too! and although I may not be pullig my hair out I sure have thinned out my eyebrows..thats my nervous tick...I get stressed and there I go plucking away  without realizing it....lol...Well I dont think this Cancer situation is a blessing because its such a nasty, terrible, weird body glitch....but me hurting my back at work was the blessing which led to the discovery of cancer.  Apparently by the time people find out its much more evolved.  How did you find out you had kidney cancer? I wish you continued good health and look forward to your response!

    P. S. Looks like a small part of the Bay Bridge left...Just noticed today as I went in the visit family.

    Cheers,

    Bee

    Hi Bee.  I found mine out by

    Hi Bee.  I found mine out by accident.  I get a physical every year and as part of the physical, blood and urine tests are done.  My urine test came back positive for microscopic amounts of blood.  So, my doc, figuring it was likely a kidney stone, sent me in for a CT scan.  Surprise!  The report came back as a small lesion on my right kidney.  That was in December, 2013.  The urologist I got referred to at Stanford recommended a wait and see approach, having me get scans (alternating between ultrasound and CT) every six months.  It wasn't until April, 2016 that an US detected that the little bugger had grown from about 1.5cm to 1.7cm, so he had me go in for a robotic-assisted partial, also at Stanford, on June 22nd.  I checked in at noon; the operation started at 3PM; the fire alarm apparently went off around 4PM; I was back in a regular room at 7PM; and I was released at 1:30PM the next day.  The pathology showed chromophobe RCC, a very slow-growing form of RCC which rarely recurs and rarely spreads, so I have counted my blessings.  My six month scan/chest xray in January showed all clear, so we'll do it again in July and if that's clean, he'll have me go every 12 months for a while, which is fine by me.

    The funny thing about the blood in my urine is that was the one, single time it ever showed up.  At my physicals in 2014 and 2015, there was no trace of blood.  If not for that single occurrence, I wouldn't know I had the lesion.

  • Steve.Adam
    Steve.Adam Member Posts: 463
    edited March 2017 #16
    marosa said:

    Hi Bee!

    You have such a positive attitude!  That is fantastic and it will carry you a long way, hang in there, you will be fine!  I too had a pretty long wait, a little over 5 weeks from the time of diagnosis.  My tumor was almost the size of yours but I, like Steve, had an artery leak hours after the surgery. In my case it went with the  risk of going with a partial at that tumor size.  

    It looks like you will pass thru this with flying colors!  Keep up your positive attitude and your spark for life!  It will do wonders for you and we will definitely profit from it too!  May this few weeks go by fast for you.

    You too!

    I should have read your 'my csn' page earlier. I thought I was the only one here who'd had that problem.

    Mine was also T1b Grade 2 and my hospital stay was also 9 days.

    I had a very easy recovery and I have wondered if the long stay in hospital helped.

    Steve.

  • beemurguia
    beemurguia Member Posts: 57
    stub1969 said:

    Welcome, Bee

    I'm glad you found this site.  I've said it before and I'm sure I'll say it many times in the future....this site is a wonderful place.  The members will reach out and support you and offer their stories and experiences to help.  I'm just over 6 months post-surgery and doing well.  I've been back to running and exercising without issues at 3 months post-surgery. 

    Can I ask where you are being treated?  Do you know if your doctor specializes in RCC?  I ask because it seems odd that surgery is out over a month for you.  As Iceman said 7cm is the right on the line of a stage 1 and 2.  Surgery for me was a couple weeks after I met with the urologist.  My intent is not to add to your anxiety, I'm just curious.

    Take care,

    Stub

    Wow back to running already?

    Wow back to running already? that is amazing and inspiring!  I will be treated at my local Kaiser Permanente hospital in Walnut Creek, CA.  The Urologist that gave me the diagnosis is the Dr. who will also be doing the surgery but Im not sure if he specializes in RCC.  Im glad you asked.  Im sure it makes a difference right? Oh my....my list of questions for him is growing exponentially...lol...another great reason for joining this forum...to learn and get insight from ya'lls experience.  His nurse/assistant indicated that he was booked until May and that they were going to try to move some patients around to accomodate an earlier surgery date for me but I guess it didnt work out that way.  Draw backs of having an HMO plan I guess.  

    I'm glad that you are doing well and wish you continued good health!

    -Bee

     

  • beemurguia
    beemurguia Member Posts: 57
    marosa said:

    Hi Bee!

    You have such a positive attitude!  That is fantastic and it will carry you a long way, hang in there, you will be fine!  I too had a pretty long wait, a little over 5 weeks from the time of diagnosis.  My tumor was almost the size of yours but I, like Steve, had an artery leak hours after the surgery. In my case it went with the  risk of going with a partial at that tumor size.  

    It looks like you will pass thru this with flying colors!  Keep up your positive attitude and your spark for life!  It will do wonders for you and we will definitely profit from it too!  May this few weeks go by fast for you.

    Thanks for sharing your story

    Thanks for sharing your story.  Im sorry you had a slight complication. How was that? did you feel like something was wrong? that is very scary.  Im glad your well now.  My step mother passed away three years ago from many complications of breast cancer.  It was her second round in a 15 year period.  She unfortunately became negative, mad, resentful, toxic.  It was very sad to see her go through such a change in her character and I strongly believe it added to her loosing her fight to stay alive.  I think that if I stay positive and grateful for what I have and experience that good things/experiences will come as a result.

    May the next couple of weeks be a blurrrrrrr!!! :-)

  • beemurguia
    beemurguia Member Posts: 57

    Hello Bee

    Glad you found us.  We are all in the same boat, bailing out the leaks, and rowing the best we can.  

    If you have two young kids, who are not at the help out with the wash and dishes or meals... yes, you better get help lined up.  

    A radical neph means a good sized incision, lots of inards getting pushed and shoved around to get to the back kidney area.  You will be told not to lift anything heavy... like over 5 lbs.  Be aware, as a mom of two young ones, your purse probably weighs more than 5 lbs... so wake up girl !  It is major surgery.  You will have to take time to let your body get over the shock !  Makes me smile, glad you have an amazing husband.  He better start the transformation now, as a working Mom, you likely believe you are supermom... and this kidney tumor removal will be your kryptoenite.. or however it is spelled.  

    Jan 4 you has advice for the tummy swelling and a binder that works wonders.  Use it.  The hardest thing getting used to after the surgery was asking for help.. something I had not ever done before. It was hard.  If your husband will get other family and friends to organize a dinner delivery to your house, and perhaps someone to come in to keep the wash and housework under control, at least for a few weeks after you come home.  Let everyone help who say they want to.... make a list, and have them take a task.  

    You will get over the tired fatigue, the soreness, the inability to sleep.  Do not think the "no pain, no gain" montra...  it is stupid in this day and age.

    You will be fine. The best thing to do is get well.  Then you will be able to take charge again, and keep your house together.  This cancer is a BIG DEAL.  Your attitude of finding this, and dealing with what may come down the road is good, and will help you tremendously.  Keep a sense of humor, know that the whole lot of us here have your back, and keep us up to date on your progress.

    We care.  We are glad you found this site.  Others will chime in I am sure, with good advice .... all from personal experiences.  Good luck

    Pam

     

    Thank you! Thank you!

    Thank you! Thank you!

    I will round up the troops and ask for help. I am used to juggling and keeping the household afloat but you are right...I better snap out of this denial and be ready to get my innards shook! 

    Pain management a must....Im old school but not in the pain department. Wink 

    I will keep ya'll posted with my progression as surgery date nears...

    cheers!

    -Bee

  • Steve.Adam
    Steve.Adam Member Posts: 463

    Thanks for sharing your story

    Thanks for sharing your story.  Im sorry you had a slight complication. How was that? did you feel like something was wrong? that is very scary.  Im glad your well now.  My step mother passed away three years ago from many complications of breast cancer.  It was her second round in a 15 year period.  She unfortunately became negative, mad, resentful, toxic.  It was very sad to see her go through such a change in her character and I strongly believe it added to her loosing her fight to stay alive.  I think that if I stay positive and grateful for what I have and experience that good things/experiences will come as a result.

    May the next couple of weeks be a blurrrrrrr!!! :-)

    Hi Bee

    I was still unconscious after the surgery when the complication (leaking artery) happened. It seems to be quite rare. Marosa is the only other case I heard of here since I joined in October. There was one other case but I don't remember where I read about it. That was an artery cutting tool that malfunctioned and cut an artery without clamping it. Similar to Marosa's and mine but more serious and also very, very unlikely.

    I updated 'My CSN' the other day and told my story briefly there.

    I went to the hospital alone. But... When friends/family phoned the hospital to find out how I was they were told that there had been a complication and that I had (or was having) emergency surgery.

    So I got more visitors than I would have otherwise, but none brought chocolate... (I don't eat sugar anyway, so no worries.)

    Even without the complication I realise that I underestimated the surgery. I was prepared to be tired and to rest for a week or two, but it just turned out to be bigger than I was expecting, even after reading stories here.

    Even though I had a fairly easy time really, it was still a shock to my system, emotionally and physically. There is some kind of spiritual effect too, but I'm not sure what that is. Maybe just smelling and seeing the flowers more clearly.

    Steve.

  • Deanie0916
    Deanie0916 Member Posts: 523 Member
    edited March 2017 #21
    Bee thanks for sharing your story

    I am 6 months out from a radical left nephrectomy and I am doing well. I just had my 6 month check up and so far no little offspring of Hubert my evil mass. Mine was 20 cm and partially in the renal vein, so I am very blessed that it hasn't spread more. I love your attitude. Walk as soon as you can and are able after surgery, it will help. God bless you.