I'm stunned

2

Comments

  • stub1969
    stub1969 Member Posts: 966 Member
    edited August 2016 #22
    Update

    Wanted to let you know that Mayo got back to me early this morning (I submitted an electronic appointment request on Saturday night).  I go in next Thursday for chest CT and blood work and then meet with Dr. George Chow on Friday morning.  Sledhead--I was hoping for Dr. Leibovich, but I'm sure they do a great job working as a team.  Donna--No biopsy was needed, so I'm not sure of the details of your husband's friend. 

    It's going to be a long two weeks--really having trouble sleeping and staying focused on other things.  I'll be honest, the worst part will be talking to our three kids after the appointment.  We have a daughter that will be in 5th grade this year and she has the biggest heart and is so caring.  I'm afraid she will be a wreck worrying about me and mom.  Our other daughter will be a high school senior this year (what a great thing for her to think about her senior year) and our son is a junior in college.  Those of you that have been through this any good advice for this conversation?  Obviously, we will try to stay positive.

     

    Thanks again--Stub

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    stub1969 said:

    Update

    Wanted to let you know that Mayo got back to me early this morning (I submitted an electronic appointment request on Saturday night).  I go in next Thursday for chest CT and blood work and then meet with Dr. George Chow on Friday morning.  Sledhead--I was hoping for Dr. Leibovich, but I'm sure they do a great job working as a team.  Donna--No biopsy was needed, so I'm not sure of the details of your husband's friend. 

    It's going to be a long two weeks--really having trouble sleeping and staying focused on other things.  I'll be honest, the worst part will be talking to our three kids after the appointment.  We have a daughter that will be in 5th grade this year and she has the biggest heart and is so caring.  I'm afraid she will be a wreck worrying about me and mom.  Our other daughter will be a high school senior this year (what a great thing for her to think about her senior year) and our son is a junior in college.  Those of you that have been through this any good advice for this conversation?  Obviously, we will try to stay positive.

     

    Thanks again--Stub

    Top of the Food Chain

    Stub,

    You are definately going to be in good hands  with Dr. Chow. He has written many professional papers on Kidney Surgery many in conjunction with Dr. Liebovich. He received most of his specialty training from the Cleveland Clinic. As for the size of your Kidney tumor there is no reason to expect other than a positive diagnosis after surgery. Besides what ever questions you have about the surgery (which is pretty routine with your size mass) you will need to ask about your long term recovery as a result of your Kidney disease issues. He may also refer you to or consult with a Nephrologist at Mayo clinic. There is no way to sugar coat the surgery. The recovery, especially the first week is painful. If I told you otherwise I would be laughed off this forum. As for discussing this with your  15 year old daughter, you are having routine surgery to remove your Kidney (or part of it). You will be laid up for a month or 2 and that you fully expect to be at her childrens' weddings. I was nephed 14 years ago today and am so old that Leonardo himself did ny surgery before he invented the robot.

     

     

    Icemantoo

  • Kangaroorex
    Kangaroorex Member Posts: 47 Member
    Stay positive and upbeat

    Yes its a horrible thing but your chances of escaping this with only a missing organ and some interesting scars are excellent.  Just tell her the facts and offer plenty of support.  My wife and I had the job of telling my HS sophmore and middle schooler about my chances.  It was a scary moment for everyone.  One piece of advice i do offer, don't lie.  There is way too much information on the internet for you to have any chance of covering up what you have or how bad it is and the kids are all really good at finding that kind of information out.  I told our children and within an hour pretty much every statement we made was completely fact checked. 

    Good luck, its going to be hard but I think you can get through it

  • dhs1963
    dhs1963 Member Posts: 513
    RCC is usually slow growing

    Most RCC is slow growing. The difference is if it is in the 1-3% that is sarcomitoid.  Assummine lower grade (less agressive), the tumors grow about 0.5 cm/yr.  A few weeks will not make a difference.

  • lcsvb
    lcsvb Member Posts: 41 Member
    edited August 2016 #26
    Stub, the tumors grow super slow!

    I would not be worried about the size changing much between now and your appointment and eventual impending surgery. It is great you can go to a place that specializes in these surgeries. I found it well worth it to go the 90 min drive to the Cancer Center for surgery. It is nice to recover surrounded by people all going through the same thing you are. These RCCs pack a powerful punch but tend to take their time before becoming beasts! Like a lot of us on here, you caught it before it hit the 7cm size mark. Praying you find a way to relax a bit and look forward to hearing about your successful surgery! 

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    Deep Breath

    Stub,  I echo the rest of the forum that it is slow growing.  I discovered mine in early Sept and removed in Mid October(5 weeks).  That was as fast as I could make all the arrangements and get the Docs availability.  The Doc had actually advised that he would not want to wait later than the following spring.  My answer to that was how soon can we get this thing done? It seemed like forever, but it all came out and within 6 weeks I was back at work etc.  Take your time healing if you can. 

     

  • stub1969
    stub1969 Member Posts: 966 Member
    edited August 2016 #28
    Thanks again

    I've said it before, but I will say it again---Thank you. 

     

    Stub

  • TKDgal
    TKDgal Member Posts: 12
    Hi there

    I am in a similar situation although my tumor is only 3.7. I am 39 with two children. We broke the news to them today and they handled it well. I feel like I'm stuck in limbo land and just want this out of me. 

  • tiger09
    tiger09 Member Posts: 9
    Hi Stub,

    Hi Stub,

    You've received some good advice thus far. You are also going to an excellent hospital and will get great care I'm sure. The size of your tumor is very small; I wouldn't worry about it growing much before your surgery. Mine was much more advanced than yours. Like you, I'm young, healthy and active; I was a little overweight before surgery but not obese. Not a smoker and don't drink much either. Try not to beat yourself up; it's unfortunately not much other than bad luck.

    You'll likely be surprised at how well your kids take the news; they are usually quite resilient. My kids have handled this better than I have in a lot of ways.

  • stub1969
    stub1969 Member Posts: 966 Member
    edited August 2016 #31
    update

    Hello everybody

    I met with Dr. Chow this morning.  Essentially, they believe that the placment of my mass works really well for a robotic-assisted laparoscopic partial nephrectomy.  Dr. Chow says he is very experienced in this process.  The mass is protruding our the bottom of my kidney and (from what they can tell) is fully encapsultated.  No sign of any progression.  They have scheduled surgery for August 26. 

    I can't tell you how much their optimism lowered my level of anxiety.  A special thanks to each of you that responded and gave me advice and assurance.  I'm so glad I made that appointment to Mayo.

    Stub

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    Great news!

    That's great news, Stub! You're ahead of me now, but not by much. My surgery is scheduled for a little over a week after yours.

    Jerzy

  • hardo718
    hardo718 Member Posts: 853 Member
    Awesome news!

    Get rid of that little beast!  Sounds like you're in good hands.  Prepare for your downtime.

    God Bless,

    Donna~

  • stub1969
    stub1969 Member Posts: 966 Member
    Good luck to you

    Good luck to you in your surgery and recovery, Jerzy.  You'll be in my praryers.

    Donna, I appreciate your comments.  Your're right--this is a little beast.  I'm so so ready to get it out of me.  I'm not sure how much downtime there will be.  Doctor told me no lifting heavy objects for 6 weeks.  I'd like to be back to school with the kiddos after a couple weeks, but I'll have to see how it goes.  I'm not really a sit-around type of guy.

    Take care and thanks again,

    Stub

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    edited August 2016 #35
    stub1969 said:

    Good luck to you

    Good luck to you in your surgery and recovery, Jerzy.  You'll be in my praryers.

    Donna, I appreciate your comments.  Your're right--this is a little beast.  I'm so so ready to get it out of me.  I'm not sure how much downtime there will be.  Doctor told me no lifting heavy objects for 6 weeks.  I'd like to be back to school with the kiddos after a couple weeks, but I'll have to see how it goes.  I'm not really a sit-around type of guy.

    Take care and thanks again,

    Stub

    Depends

    Depends on what type of teacher you are. If you're a sitting down giving instructions kind of guy you might be OK. If your a stand up motivator moving sort of guy that might be a problem. Didnt you say you were sp Ed, one of the things that led me to quit is that, due to fatigue I lost a level of patience which made me a less effective teacher.

  • stub1969
    stub1969 Member Posts: 966 Member
    Teacher

    Foots, I'm actually an elementary principal.  I love the work.  I know I'm biased, but I believe I get to work with the best teachers, students, and families.  I'm not in the office much throughout the day.  You'll find me throughout the school working with students, co-teaching in the classrooms, or getting "slimmed" (Usually this is in the winter months:)) in the preschool rooms.  But, unlike a teacher, I can reel it back and not be so active.  I just have to watch out for the running hugs that come my way!

    Stub

  • Trebor27
    Trebor27 Member Posts: 7
    Waiting is the hardest part

    Had some abdominal pain last week and I went to the doc. They gave me some antibiotics but said that I should get a CT scan of my upper right abdomen. Sure enough, they found a slightly less than 1 cm lesion in my right kidney. The good news, I guess, is that it's really small. I went to a Chinese medicine doctor who said i am blessed that my body told me about this problem early. But I'm not handling it well. Mine is apparently in the "mid-lower region" and I'm really hoping it's amenable to a partial but I guess that depends on the surgeon since I've read that they can't always get at tumors in the mid-region with a partial.

    I'm very afraid and, like others on the board, have young children. The radiologist said there was a good chance that the lesion was angiomyolipoma since it was something called hyperechoic but I need an MRI. Other than some very mild heaviness in my lower back, which could be my imagination, I'm 100% fine. I had a scan on my kidney for something else in 2013 and it was clean so i know this thing has taken 0-40 months to form.

    My sister died from colon cancer at age 32 (I'm 47). I don't have the heart to tell me parents that their only remaing child may have cancer never mind my 11 and 7 year old. Urologist test on Tuesday and then I hope a slew of tests immediately thereafter. My wife thinks it will be benign and we'll just watch and wait for years to come. She tells me to get on with work but I can't concentrate. My fear is running wild though. Very scared. Thanks for this board. If anyone knows any positive stories about treatment and survival, let me know. I think the internet tends to self-select many of the worst cases, which I totally get and am not critical about. The advice about talking with kids has been super.

    If there is anything that I can do for anyone, let me know. 

     

     

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Trebor27 said:

    Waiting is the hardest part

    Had some abdominal pain last week and I went to the doc. They gave me some antibiotics but said that I should get a CT scan of my upper right abdomen. Sure enough, they found a slightly less than 1 cm lesion in my right kidney. The good news, I guess, is that it's really small. I went to a Chinese medicine doctor who said i am blessed that my body told me about this problem early. But I'm not handling it well. Mine is apparently in the "mid-lower region" and I'm really hoping it's amenable to a partial but I guess that depends on the surgeon since I've read that they can't always get at tumors in the mid-region with a partial.

    I'm very afraid and, like others on the board, have young children. The radiologist said there was a good chance that the lesion was angiomyolipoma since it was something called hyperechoic but I need an MRI. Other than some very mild heaviness in my lower back, which could be my imagination, I'm 100% fine. I had a scan on my kidney for something else in 2013 and it was clean so i know this thing has taken 0-40 months to form.

    My sister died from colon cancer at age 32 (I'm 47). I don't have the heart to tell me parents that their only remaing child may have cancer never mind my 11 and 7 year old. Urologist test on Tuesday and then I hope a slew of tests immediately thereafter. My wife thinks it will be benign and we'll just watch and wait for years to come. She tells me to get on with work but I can't concentrate. My fear is running wild though. Very scared. Thanks for this board. If anyone knows any positive stories about treatment and survival, let me know. I think the internet tends to self-select many of the worst cases, which I totally get and am not critical about. The advice about talking with kids has been super.

    If there is anything that I can do for anyone, let me know. 

     

     

    It is only a could be so far.

    Trebor,

     

    We were all scare sh--less when we were told we had Kidney Cancer out of the blue. I sure was in the spring of 2002. So far yours is inconclusive and you may be confronted with a watch a wait approach. Either way with such a little buggar you will be fine. Nothing to worry about for now.  Even if it develops into the C word it is 100% curable at this size or even 3 or 4 time as big.

     

     

    Icemantoo

  • Trebor27
    Trebor27 Member Posts: 7
    Could be

    Icemantoo -- Thanks for the kind words. Your story is really uplifting and you are very generous to be here posting all these years later. It's a sign of a good heart. I feel like a bit of a wimp having gone through some of the other threads since writing my first post. The walk-in clinic doc kinda freaked me out when she told me the results but I can see where the pros - doctors and patients alike - would say my outcome is almost certainly good. Guess we'll know more this week but I'm ready to take on any challenges.

  • Footstomper
    Footstomper Member Posts: 1,237 Member
    Whats the use of worrying?

    It never was worthwhile! I never thought I'd agree with a practitioner of chinese medicine but you ARE blessed it was found so soon. 1cm is as TINY as it is scary. Mine was 10 times that size and others here have bigger. Chances are it will be dealt with and you'll be faced with a life of yearly check-ups.

    advice:

    STOP SEARCHING THE INTERNET. IT IS EITHER OBSOLETE OR INSANE OR, MORE OFTEN, BOTH.

    This is a good site, there is another called Smart patients which is also helpful.

    Fear running wild? Cant concentrate? You and the rest of us, but with a lump your size I reckon youve got a very good chance to watch your children graduate from High school, run up student debt and return home,with inappropriate friends at the age of 22.

    Good luck my friend and welcome.

  • LauraM3
    LauraM3 Member Posts: 27
    I am a teacher too

    3rd Grade teacher.  I was diagnosed in Feb 2016. My left kidney was removed bc the mast was so huge.  I have 3 mets in my lungs.  I have been on Votrient and mets have decreased to less than 1cm in lung and NED everywhere else.  Praise God.