New need advice / update

2

Comments

  • aamdsi
    aamdsi Member Posts: 284
    Sad told by phone

    Think that's a bit cruel.

    I found out out of the blue as well. No symptoms or anything.

    Make a list of all questions (there are no "stupid" ones), knowig what you are in for will help. Make sure someone goes with you to the Dr. appt. so they can hear and ask as well. It will help later recalling info.

    As Iceman said, surgery and recovery are no fun - but in the end - the result will be worth it.

    Take a deep breath. We are all here for you!

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Max57 said:

    So tomorrow  iam going to see

    So tomorrow  iam going to see my Urologist

    can someone guide me what to aske him

    after I meet him what kind of decisions he

    going to make

    Go with the flow

    Max,

    My first visit to the urologist was a very quick affair.  As I said above, they are going to want to get rid of the tumor ASAP and you are going to nod and go along with the plan because that's what we do.  Get it out.  

    My experience was that I was very calm after seeing him.  He had an air of confidence and knowledge about him that put me at ease and I knew that this was the best course of action.  Hopefully you get the same sense.  Leading up to the surgery will be tough; you will be nervous, but it feels good to have a plan and know that in a few short weeks you will (very likely) be cancer free.  AFTER the surgery when they see what type of cancer and everything else is really when the questions and long term planning comes into effect.

    For now, make sure your docs know what they're doing and get the tumor out.

    - Jay

  • Max57
    Max57 Member Posts: 177 Member

    Go with the flow

    Max,

    My first visit to the urologist was a very quick affair.  As I said above, they are going to want to get rid of the tumor ASAP and you are going to nod and go along with the plan because that's what we do.  Get it out.  

    My experience was that I was very calm after seeing him.  He had an air of confidence and knowledge about him that put me at ease and I knew that this was the best course of action.  Hopefully you get the same sense.  Leading up to the surgery will be tough; you will be nervous, but it feels good to have a plan and know that in a few short weeks you will (very likely) be cancer free.  AFTER the surgery when they see what type of cancer and everything else is really when the questions and long term planning comes into effect.

    For now, make sure your docs know what they're doing and get the tumor out.

    - Jay

    Thanks Jay... have question

    Thanks Jay... have question since they start the tests I had the feeling some things wrong... Now I don't want eat I force my self on food I got wave of heat from time to time... Is this normal 

  • Max57
    Max57 Member Posts: 177 Member
    aamdsi said:

    Sad told by phone

    Think that's a bit cruel.

    I found out out of the blue as well. No symptoms or anything.

    Make a list of all questions (there are no "stupid" ones), knowig what you are in for will help. Make sure someone goes with you to the Dr. appt. so they can hear and ask as well. It will help later recalling info.

    As Iceman said, surgery and recovery are no fun - but in the end - the result will be worth it.

    Take a deep breath. We are all here for you!

    aamdis..... Thanks so much

    aamdis..... Thanks so muchFrown

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Max57 said:

    Thanks Jay... have question

    Thanks Jay... have question since they start the tests I had the feeling some things wrong... Now I don't want eat I force my self on food I got wave of heat from time to time... Is this normal 

    Eating issue

    Max,

    Cant really say I had any issues with eating... something to remember is that your brain is going to play a lot of tricks on you. It's the way that it is. Every little ache pain and weird bodily function will be scrutinized... For those who dont believe in the power of the mind to affect the body... Believe it!! You have to chill out a little bit. Relish in the knowledge that your cancer (if that's what it is... it may be benign) was caught early. 

    - Jay

  • Max57 said:

    Update... help

    So tomorrow  iam going to see my Urologist 

    can someone guide me what to aske him

    after I meet him what kind of decisions he

    going to make

    Max,
    A couple of things to

    Max,

    A couple of things to consider with your urologist.  Your surgery will be either laparascopic (maybe with a robot) or an open surgery.  For the size of your tumor, you may be looking at a partial nephrectomy (removal of only a part of your kidney along with the tumor).  However, if your tumor is in a diffifcult location, you may need a radical nephrectomy (complete removal of the kidney with the tumor).   Even if you are scheduled for a partial nephrectomy, it is likely you will sign a consent form that a radical nephrectomy may need to be performed, as sometimes one the surgery starts, a radical nephrectomy becomes necessary.  Some surgeons perform both types of surgery laparascopic and open.  Some only perform one type. The urologist may also explain the time of recovery. While laparascopic surgery is often indicated as having a shorter recovery time, many here have had a good recovery time with the open surgery.   The first urologist I visited indicated I would need a radical nephrectomy because my tumor was in a bad location.  I got a second opinion, and the second surgeon was able to do a partial nephrectomy by open surgery and preserve 95% of my kidney.   Hope this helps.

  • Max57
    Max57 Member Posts: 177 Member
    Ultrasound waves

    Friday 03/21 it's the date for ultrasound waves to take care of the stone on the right kidney.... Can any one shear his or her experience on this is it painful? 

    04/14 is scheduled  to operate on the left kidney  Dr  said it's going to be Partial but she can't use the robot Because it's hard to get to the toumer 

  • Max57
    Max57 Member Posts: 177 Member
    Question

    Is it safer to do partial or just remove the kidney the toumer is 2.5 cm right in the corner close to the ultrey  

  • Allochka
    Allochka Member Posts: 1,060 Member
    Max57 said:

    Question

    Is it safer to do partial or just remove the kidney the toumer is 2.5 cm right in the corner close to the ultrey  

    As I heard, partials are as

    As I heard, partials are as safe in terms of possible recurrences as full ones. And you would always want to keep as much kidney left as possible, just in case

  • Max57
    Max57 Member Posts: 177 Member
    Allochka said:

    As I heard, partials are as

    As I heard, partials are as safe in terms of possible recurrences as full ones. And you would always want to keep as much kidney left as possible, just in case

    Allochka

    thank you very much for your reply..... 

  • aamdsi
    aamdsi Member Posts: 284
    You'll be fine

    I had a open partial (which is what it sounds like you will, was able to keep 60%. Keeping your original equipment is always good 8-).  It's NO FUN, that's for sure.  No way to sugar coat it.  Just be reassured that they are taking the tumor out and hopefully/most likely that will be the end of that.

    Use the pain reilef they give you - don't be afraid to ask for it.  Walk as soon as as much as you can.  Drink lots of water and just keep reminding yourself, that everyday it does get better. Celebrate the "small things".  The first walk down the hall to your staples being removed.  Be good to yourself! 

    Also, ask questions.  Up to the moment they knock you out, you can ask.  Ask when you come out of the surgery, even simple questions are welcome. 

    Also, ask here - since we have all been through it - we can answer non-medical things.

    Would love to tell you to relax now, but know that won't happen.  So...just take a deep breath and take it one day at a time

     

    Hugs,

    Laurie

  • Max57
    Max57 Member Posts: 177 Member
    aamdsi said:

    You'll be fine

    I had a open partial (which is what it sounds like you will, was able to keep 60%. Keeping your original equipment is always good 8-).  It's NO FUN, that's for sure.  No way to sugar coat it.  Just be reassured that they are taking the tumor out and hopefully/most likely that will be the end of that.

    Use the pain reilef they give you - don't be afraid to ask for it.  Walk as soon as as much as you can.  Drink lots of water and just keep reminding yourself, that everyday it does get better. Celebrate the "small things".  The first walk down the hall to your staples being removed.  Be good to yourself! 

    Also, ask questions.  Up to the moment they knock you out, you can ask.  Ask when you come out of the surgery, even simple questions are welcome. 

    Also, ask here - since we have all been through it - we can answer non-medical things.

    Would love to tell you to relax now, but know that won't happen.  So...just take a deep breath and take it one day at a time

     

    Hugs,

    Laurie

    Laurie

    Your comment a huge rleaf... The toumer  I have so close to the  left corner even the Dr said it's going to be hard job my question can I decided what to do like if I tell the Dr I feel safer if you take the hole kidney out would she listen to me!!!.... Thanxxxxx

  • aamdsi
    aamdsi Member Posts: 284
    Max57 said:

    Laurie

    Your comment a huge rleaf... The toumer  I have so close to the  left corner even the Dr said it's going to be hard job my question can I decided what to do like if I tell the Dr I feel safer if you take the hole kidney out would she listen to me!!!.... Thanxxxxx

    Doctor's know best

    Wish I could tell you yes, but....  The Dr.'s know what they are doing.  They also know that keeping part is better than taking everything - unless it isn't safe for you.

    I know many on this board have but one kidney and doing great, living like they still had both. And many of us have partials and doing the same.  I have a step-sister that has just one and it was donated and she is doing fabulous.

    You just need to allow them to know what they are doing and spend your energy on getting well after 8-)  I know I know, easier said than done...but do try. 

    It just sucks doesn't it.

     

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

    Doctor's know best

    Wish I could tell you yes, but....  The Dr.'s know what they are doing.  They also know that keeping part is better than taking everything - unless it isn't safe for you.

    I know many on this board have but one kidney and doing great, living like they still had both. And many of us have partials and doing the same.  I have a step-sister that has just one and it was donated and she is doing fabulous.

    You just need to allow them to know what they are doing and spend your energy on getting well after 8-)  I know I know, easier said than done...but do try. 

    It just sucks doesn't it.

     

    Max, mine was a 3.5 cm tumor

    Max, mine was a 3.5 cm tumor and an open partial. I opted for open because my surgeon/oncologist explained the difference between lap and open and convinced me open was best and safest. I did not have a hard recovery and was out of the hospital in 2 days. I was up and walking the night of the surgery. Off pain killers in about 10 - 14 days; dont' remember. Incision is just a little over 4 inches. So if it has to be an open one, don't worry. It's not as awful as everyone, myself included fears it. Questions to ask are:

    1. what surgical procedures are my options?

    2. explain each one and give me the advantages and disadvantages.

    Once it's over, regardless of the procedure, get up and walk as soon as possible and walk as much as possible. Also drink tons of water. Use breathing exercises they give you to keep your lungs clear.

     Your loss of appetite right now is 99 percent due to nerves and anxiety I bet. But once it's over you still wont' be very hungry. I wasn't for about 4 - 5 days and just forced myself to eat soft boiled eggs, toast, soup, things like that.

    Best of luck and please let us know how everything is going.

  • Max57
    Max57 Member Posts: 177 Member
    APny /aamdsi

    Thanks so much for sweet comfort comments I really need them this cancer hit me and my wife and the kids from no were and just left us speechless confused... What went wrong why what........no answers... My daughter  she is  29 saide yesterday that she is going to wake up and it was just bad dreamy... Laughing

  • Allochka
    Allochka Member Posts: 1,060 Member
    Max57 said:

    APny /aamdsi

    Thanks so much for sweet comfort comments I really need them this cancer hit me and my wife and the kids from no were and just left us speechless confused... What went wrong why what........no answers... My daughter  she is  29 saide yesterday that she is going to wake up and it was just bad dreamy... Laughing

    Max, pleas eremember and try

    Max, pleas eremember and try to persuade your family that 2,5 cm kidney cancer is far from the worst nightmare! It is tough thing to face for sure, but not the worst. Your prognosis after surgery is great based on the size of your tumor. You should not think of your situation as of deadly one.

  • Max57
    Max57 Member Posts: 177 Member
    Allochka said:

    Max, pleas eremember and try

    Max, pleas eremember and try to persuade your family that 2,5 cm kidney cancer is far from the worst nightmare! It is tough thing to face for sure, but not the worst. Your prognosis after surgery is great based on the size of your tumor. You should not think of your situation as of deadly one.

    Allochka

    Sure I will try  and I agree with  you it's tough 

  • APny
    APny Member Posts: 1,995 Member
    Max57 said:

    Allochka

    Sure I will try  and I agree with  you it's tough 

    Yes, it hit us all out of the

    Yes, it hit us all out of the blue and it’s awful. I think we all went through the “how did this happen” phase. I simply looked at my urologist and without thinking blurted out “who the fu** gets kidney cancer? I never heard of anyone who had it. And it’s an equal opportunity disease. All the risk factors were missing for me: I’m thin, I exercised all my life, don’t eat fried or fatty or unhealthy foods, don’t smoke, I’m not a male, and have normal to low blood pressure. Not a single member of my family ever had cancer of any kind. So go figure how I got so “lucky” lol?

    It sounds like you’ll be having a partial and honestly, that way they can see the kidney, feel the kidney, and get a good idea of whether a partial will do it or it may have to turn into a radical. If they can save the majority of your kidney that would be fabulous. If not, as others have said, you can live a healthy full life with one. I did not have staples, only surgical tape. That made for a very thin scar and less discomfort while healing. Thank god your tumor is small and most likely completely contained to the kidney. Which means you’ll most likely be around for a long time J

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    APny said:

    Yes, it hit us all out of the

    Yes, it hit us all out of the blue and it’s awful. I think we all went through the “how did this happen” phase. I simply looked at my urologist and without thinking blurted out “who the fu** gets kidney cancer? I never heard of anyone who had it. And it’s an equal opportunity disease. All the risk factors were missing for me: I’m thin, I exercised all my life, don’t eat fried or fatty or unhealthy foods, don’t smoke, I’m not a male, and have normal to low blood pressure. Not a single member of my family ever had cancer of any kind. So go figure how I got so “lucky” lol?

    It sounds like you’ll be having a partial and honestly, that way they can see the kidney, feel the kidney, and get a good idea of whether a partial will do it or it may have to turn into a radical. If they can save the majority of your kidney that would be fabulous. If not, as others have said, you can live a healthy full life with one. I did not have staples, only surgical tape. That made for a very thin scar and less discomfort while healing. Thank god your tumor is small and most likely completely contained to the kidney. Which means you’ll most likely be around for a long time J

    Again,  I am glad you are

    Again,  I am glad you are asking away and gaining support on this site!

    However, I do not want to "normalize" this for you. You will discover your new normal.

    But what I learned on here is that you are probably stage 1. Even if the thought of cancer hits you and your family hard, shock and why are to be expected. That scary part will pass, it will. After all we are all surviving on here. Some have it a bit harder than us Stage one folks.

    What I learned that stuck with ME, is that if you had to get cancer, kidney cancer is usually the easier one, as you do not need chemo or radiation or meds to follow if you are stage one. Once the tumor is out, its out. THAT is if you are stage one which it seems you are. Yes, there is a recovery time, but you'll get through that and be a changed person, BUT in a good way! And recovery from robatic surgery is less invasive, but an "open" incision type surgery is not as invasive as it once was. The incisions are smaller now. But you must adhere to the doctor's rules for recovery as your insides are trying to heal.

    Keep telling yourself and  your family that you WILL get through this and worrying will not help at all. Get as much information and trust your doctors. You will be monitored as that is protocol that the surgeon follows.

    I am grateful that my cancer was stage one. I am glad my recovery was not that bad. Attitude is something I can control, along with making sure I am educated and live a healthier life.

    Again, let us know how you are doing. I respect your follow up responses.

    Warmly, Jan

  • Max57 said:

    APny /aamdsi

    Thanks so much for sweet comfort comments I really need them this cancer hit me and my wife and the kids from no were and just left us speechless confused... What went wrong why what........no answers... My daughter  she is  29 saide yesterday that she is going to wake up and it was just bad dreamy... Laughing

    I'm 48, and I have two boys

    I'm 48, and I have two boys who are 14 and 11 years old.  When this hit me, we all took it in stride, but it was very hard on my youngest boy.  I remember the day I left for the hospital, my youngest guy started bawling.  I was scared of the unknown, the surgery, the recovery.  I did not join this site until after my surgery, and I had read some horror stories about the surgery elsewhere--all of them were unfounded.  I wish I had found this site earlier.  I look back on the whole pre-surgery experience and feel a little bit silly about my reaction--normally, I am a pretty tough person and don't let anything get me down.  But at the time, the enormity of the "C" word, an open surgery on a major organ and an epic fight with my health insurance company to let me have the surgery done at Sloan Kettering wore me down to a ball of emotions.   THankfully, my wonderful wife was my rock and handled me with care before, during and after the surgery.   Now, 8 months later, everyone around our house act like nothing happened.  Pretty much back to normal, and it has been that way for several months.   I even feel strange saying that I "had cancer" because it seemed like a temporary resident in my body.  But I am also a little wary and vigilant about the small chance of recurrence.   We are all different, and as Jan said, you have to find your new normal and your comfort zone.  It took me a while to find mine.