newbe - do I want to wait or . . .

theHat
theHat Member Posts: 3
in Kidney Cancer #1

Hi all, yeah, yet another clueless nube here. I'm going to see the surgeon (urologist) on Monday and am trying to figure a few things out before I get there.

Brief history of this mess: I thought I might have a kidney stone or bladder infection or something last December and since I was about to take a 12 hour drive I decided to make sure rather than finding out the hard way half way there. After Urgent Care sent me to the ER for a CT scan they told me very little except that my previously well-controlled diabetes was out of hand (went from nicely handled by diet and a few pills to BG over the limit for the meter and insulin dependant in a few months) and there was this cyst on my kidney that I should check and not worry about. "Have a nice trip!"

The pain did subside after about ten days of bad to worse to not so bad and back. Had the ultrasound when I got back and was told it was a 2.6 cm complex cyst but they couldn't rule out neoplasm and to go for an MRI. Nice, except I've had a pacemaker since my early 30s (heart's fine, wiring is screwed up--had a heart block when I swallowed--kind of thing you laugh about after the fact) and so the MRI was a no go. 

So I was sent to the surgeon. At this point I'm still freaking out about my BG levels and afraid to eat, my father (12 hours away) was failing and I was needed there and my job was (is) in a merger flux. The urologist said it wasn't bad news but it wasn't good news. It would eventually have to come out. I just nodded and let him talk about watching and waiting. He asked me if that was what I wanted to hear. Heh. At that point I just wanted to muddle through the next few months with my dad, get my BG back to something approaching normal, and come out on the other end still working. You bet it was what I wanted to hear!  But now.. well now things are a bit different. My Dad passed away last month, my BG is under control (gotta love insulin) and my job is good for at least (maybe only) the next year.

Here's the thing: I just had my followup ultrasound. I'll see the urologist on Monday. I'm thinking it will probably just be more watching and waiting.  However, since the thing is that close to being too big to question and since I am NOT sure how my insurance/job situation will be a year from now (nor do any of us really know what the state of health care in the US will be in the future), should I press to take action now rather than later? Is this something I should just sit back and let the surgeon decide, or is this something I should have some say in. (Do I even really WANT some say in it?) I realize that at the smaller size, the chances are it is benign. However I've dodged the cancer thing once before (ten years out of endometrial cancer) and there's part of me that feels like I'd feel better just being done with this and moving on NOW rather than later. I've had/got a lot on my plate. It would be nice to get one thing off (but is it worth the pain of surgery?)

Do I sound confused? I am.

 

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2

    The hat,

     

    Reading between the lines it seems like you are being told that it has to come out sooner or later and because it is small they are not pressing for immeadiate surgery.

     

    My thoughts are that once you resolve any pending medical issue that may be in the way, and while you have good insurance, the sooner the better. Over time these complex cysts tend to grow and as they grow the chance of malignancy increases.

     

    The surgery is not fun. Nobody can honestly tell you it does'nt heart, but in the long run it beats  the alternative. All of us on this board gave either had or are caretakers for someone who has had the surgery. Mine was 11 years ago. Young Faye across the street is at 18 years and she is only 82.

    Although no one in his right mind wants to join our club, we welcome you with open arms.

     

    Icemantoo

  • theHat
    theHat Member Posts: 3
    #3
    icemantoo said:

    The hat,

     

    Reading between the lines it seems like you are being told that it has to come out sooner or later and because it is small they are not pressing for immeadiate surgery.

     

    My thoughts are that once you resolve any pending medical issue that may be in the way, and while you have good insurance, the sooner the better. Over time these complex cysts tend to grow and as they grow the chance of malignancy increases.

     

    The surgery is not fun. Nobody can honestly tell you it does'nt heart, but in the long run it beats  the alternative. All of us on this board gave either had or are caretakers for someone who has had the surgery. Mine was 11 years ago. Young Faye across the street is at 18 years and she is only 82.

    Although no one in his right mind wants to join our club, we welcome you with open arms.

     

    Icemantoo

    Thanks!

    Thanks so much for responding, Icemantoo! You are supporting my gut (perhaps a poor choice of word?) sense of my situation.

    I'm honestly not too afraid of the physical pain. Because of my previous brush with cancer, I've had major open abdominal surgery, so I'm guessing that if they can do this with a laparoscopic procedure, it may even be a bit easier. I was back to work in half the time I  was told to expect the last time. However, i am a bit worried about all the additional health issues that have piled on since that last majar surgery and a bit nervous in that I gather there is more risk involved from the get go when mucking around with a major organ like the kidney.

    Having said that, my diabetes is under control, thyroid finally fixed and otherwise I'm active and tend to think of myself as healthy even if the list of stuff that has gone wrong with me sounds kinda scary sometimes.  I am only 56, so I've still got lots of working years ahead.  I'd certainly like to get rid of this thing before it becomes cancer. I have no desire  brag that I beat cancer twice! Once is plenty, thanks ;-)

    one more question, what determines if the surgery can be done laparoscopically or not? Can all small masses be handled that way?

    and thanks again  so very much for your kindness to the newbie here!

     

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #4
    theHat said:

    Thanks!

    Thanks so much for responding, Icemantoo! You are supporting my gut (perhaps a poor choice of word?) sense of my situation.

    I'm honestly not too afraid of the physical pain. Because of my previous brush with cancer, I've had major open abdominal surgery, so I'm guessing that if they can do this with a laparoscopic procedure, it may even be a bit easier. I was back to work in half the time I  was told to expect the last time. However, i am a bit worried about all the additional health issues that have piled on since that last majar surgery and a bit nervous in that I gather there is more risk involved from the get go when mucking around with a major organ like the kidney.

    Having said that, my diabetes is under control, thyroid finally fixed and otherwise I'm active and tend to think of myself as healthy even if the list of stuff that has gone wrong with me sounds kinda scary sometimes.  I am only 56, so I've still got lots of working years ahead.  I'd certainly like to get rid of this thing before it becomes cancer. I have no desire  brag that I beat cancer twice! Once is plenty, thanks ;-)

    one more question, what determines if the surgery can be done laparoscopically or not? Can all small masses be handled that way?

    and thanks again  so very much for your kindness to the newbie here!

     

    Laproscopic

    Hat,

     

    Generally whether the surgery is done laproscopicaly depends on the size of the tumor. Other factors over my pay grade are also considered having to do with the type and location of the tumor. Sometines it is a games day decision. I am sure you will discus this with your surgeon.

     

     

    Icemantoo

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #5
    theHat said:

    Thanks!

    Thanks so much for responding, Icemantoo! You are supporting my gut (perhaps a poor choice of word?) sense of my situation.

    I'm honestly not too afraid of the physical pain. Because of my previous brush with cancer, I've had major open abdominal surgery, so I'm guessing that if they can do this with a laparoscopic procedure, it may even be a bit easier. I was back to work in half the time I  was told to expect the last time. However, i am a bit worried about all the additional health issues that have piled on since that last majar surgery and a bit nervous in that I gather there is more risk involved from the get go when mucking around with a major organ like the kidney.

    Having said that, my diabetes is under control, thyroid finally fixed and otherwise I'm active and tend to think of myself as healthy even if the list of stuff that has gone wrong with me sounds kinda scary sometimes.  I am only 56, so I've still got lots of working years ahead.  I'd certainly like to get rid of this thing before it becomes cancer. I have no desire  brag that I beat cancer twice! Once is plenty, thanks ;-)

    one more question, what determines if the surgery can be done laparoscopically or not? Can all small masses be handled that way?

    and thanks again  so very much for your kindness to the newbie here!

     

    Laparoscopic method

    Hat, the main determinants of the feasibility of going the lap route are size (no problem for you) and location.  Assuming yours is not too awkwardly located, lap will be fine and will be substantially less painful and have a much shorter recovery time.

  • MeMeJoy
    MeMeJoy Member Posts: 70
    #6
    theHat said:

    Thanks!

    Thanks so much for responding, Icemantoo! You are supporting my gut (perhaps a poor choice of word?) sense of my situation.

    I'm honestly not too afraid of the physical pain. Because of my previous brush with cancer, I've had major open abdominal surgery, so I'm guessing that if they can do this with a laparoscopic procedure, it may even be a bit easier. I was back to work in half the time I  was told to expect the last time. However, i am a bit worried about all the additional health issues that have piled on since that last majar surgery and a bit nervous in that I gather there is more risk involved from the get go when mucking around with a major organ like the kidney.

    Having said that, my diabetes is under control, thyroid finally fixed and otherwise I'm active and tend to think of myself as healthy even if the list of stuff that has gone wrong with me sounds kinda scary sometimes.  I am only 56, so I've still got lots of working years ahead.  I'd certainly like to get rid of this thing before it becomes cancer. I have no desire  brag that I beat cancer twice! Once is plenty, thanks ;-)

    one more question, what determines if the surgery can be done laparoscopically or not? Can all small masses be handled that way?

    and thanks again  so very much for your kindness to the newbie here!

     

    Another option

    It is my understanding as well that the main determinants are size and location. Though other factors can come into play I'm sure.

    My tumor was 10cm and I had a radical nephrectomy that was done via Hand Assisted Laparoscopic. 2 tiny inscissions (one looks like a scratch now at 2 months post op) and 1 about 4 inches through my belly button.

    so there are options :)

  • MDCinSC
    MDCinSC Member Posts: 574
    #7
    MeMeJoy said:

    Another option

    It is my understanding as well that the main determinants are size and location. Though other factors can come into play I'm sure.

    My tumor was 10cm and I had a radical nephrectomy that was done via Hand Assisted Laparoscopic. 2 tiny inscissions (one looks like a scratch now at 2 months post op) and 1 about 4 inches through my belly button.

    so there are options :)

    Adding an AMEN!

    My 4.5 CM was also doen with Hand Assist Laparascopic surgery.  Compared to most stories here, mine was a piece of cake!

    In this cse, sooner is better!

    Michael

  • GSRon
    GSRon Member Posts: 1,303 Member
    #8
    MDCinSC said:

    Adding an AMEN!

    My 4.5 CM was also doen with Hand Assist Laparascopic surgery.  Compared to most stories here, mine was a piece of cake!

    In this cse, sooner is better!

    Michael

    Gosh... a toughie for sure..

    Gosh... a toughie for sure.. but it may help you after hearing the results of the new scan.  If there has been no growth... well.. maybe no.. if there is growth, then you have your for sure answer..

    Good Luck..!!

    Ron

  • theHat
    theHat Member Posts: 3
    #9
    Thank you ALL!

    Well, I'm not a member yet, apparently. The renal mass has apparently GOTTEN SMALLER! Apparently it is down a whole two mm. I'm guessing that means it is a fluid filled cyst of some sort? The surgeon wasn't very forth coming about that part and I, unfortunately, was probably too focused on trying to get the darned thing out :-}

    Even so, I asked the surgeon if it wasn't better to act now rather than wait. He said no. He used the standard line about if it was my sister or mother I wouldn't. Soooo  I'm relieved on one hand and still a bit worried on the other.  Considering the stuff that has hit me this year, I'm willing to take some vacation time rather than sick time. It will be a novel experience since every vacation in the last three years has been spent taking care of my Dad.

    Anyway, MOSTLY, thanks to you all for taking the time and effort to help me think things through this weekend. I may yet be back here, but for now, I'll leave but keep you ALL in my thoughts and prayers and will always be grateful for your support.  Just rereading that... it doesn't seem enough, but it is all I have to repay you all.

    Hat

     

  • cralleycat
    cralleycat Member Posts: 10
    #10
    theHat~
    I can only speak of

    theHat~

    I can only speak of my similar experience..I, like you had a small cyst (9mm) show up on an ultrasound that was done for abdominal pain about 3 years ago. The doctor told me not to worry about it and even told me that most adults get kidney cysts. No follow ups were even recommended. I forgot all about it until I had a CT scan of my abdomen for an unrelated issue in March this year and the thing showed up more than 2 and a half times the size of the original finding and I was told it was an 80% chance of being cancer. I was able to have the MRI and it ruled out a fluid filled cyst.. I just had a robotic laproscopic partial nephrectomy on July 5 and I am doing  great .. healing very well and the pain was surprisingly less than i anticipated. The pathology report confirmed clear cell renal carcinoma stage 1 grade 2. It scares me that if I hadn't had that CT scan in March, how long would it have been growing since I never gave that little cyst another thought.. I would just be extra cautious since you are diabetic.. I am too so even though my tumor was also small and i had time.. i figured with other chronic diseases, that I needed to get it out while I'm still in good enough health..this site is a great resource and the people here are very knowledgeable and just reading the posts in the weeks leading up to my surgery quelled much of the anxiety I was feeling.. good luck to you..you'll come out okSmile 

  • MDCinSC
    MDCinSC Member Posts: 574
    #11
    cralleycat said:

    theHat~
    I can only speak of

    theHat~

    I can only speak of my similar experience..I, like you had a small cyst (9mm) show up on an ultrasound that was done for abdominal pain about 3 years ago. The doctor told me not to worry about it and even told me that most adults get kidney cysts. No follow ups were even recommended. I forgot all about it until I had a CT scan of my abdomen for an unrelated issue in March this year and the thing showed up more than 2 and a half times the size of the original finding and I was told it was an 80% chance of being cancer. I was able to have the MRI and it ruled out a fluid filled cyst.. I just had a robotic laproscopic partial nephrectomy on July 5 and I am doing  great .. healing very well and the pain was surprisingly less than i anticipated. The pathology report confirmed clear cell renal carcinoma stage 1 grade 2. It scares me that if I hadn't had that CT scan in March, how long would it have been growing since I never gave that little cyst another thought.. I would just be extra cautious since you are diabetic.. I am too so even though my tumor was also small and i had time.. i figured with other chronic diseases, that I needed to get it out while I'm still in good enough health..this site is a great resource and the people here are very knowledgeable and just reading the posts in the weeks leading up to my surgery quelled much of the anxiety I was feeling.. good luck to you..you'll come out okSmile 

    Cat, I know that story!

    It is my own!  Mine was found while my doctor was looking for  a gastric problem! 

    Funny, after the surgery and the recovery, the gastric problem hasn't returned. Funny how that works!  My mass was 4.5 cm, about the size of a golf ball.  I had my radical via hand assist laparascopic on May 14th.  Life is terrific and being a part of this group continues to uplift and amaze me. 

    theHat, hang in!  That good report is heartening.  While your contributions would be appreciated, I, for one, like it when we find out we DON'T have to hand out another membership card!

    Michael

Discussion Boards