What's typical

Melliebean
Melliebean Member Posts: 53

So I was feeling a little more at ease with my doctor but today they called to set up surgery date and it's September 8th. Is that the norm on the wait for surgery? I was just kind of taken aback mainly because of my leg pain and the fatigue when I had talked to the DR last night he had seemed like it needed done sooner than that because he said it was larger on the second scan. Plus it was poorly differentiated. Is the wait for surgery typically just over two months or do I need to go get seen elsewhere?  I feel like I am getting the run around. I told the lady look I have been in the office for all of five minutes, I've had a phone call I have cancer, another phone call I need to schedule surgery and that's all the info I've recieved. I'm gonna be????????

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Comments

  • GSRon
    GSRon Member Posts: 1,303
    Yes, Mellie, it is clear you

    Yes, Mellie, it is clear you are a bit on edge.  Nothing we can say will stop that.. only YOU can stop it.. hard to do, I know.  I noticed in your last post, your hubby went with you, but sounds like he was not with you during the doctor part.. WHY..?  It is a very good thing to have someone with you during the doctor chat, that person can write down your questions to ask before the visit, and take notes during the visit.  Often the patient is not clear headed enough to do it alone.  Remember two heads are better than one..!

    The wait, not unusual.  Especially since your tumor is on the small side of things.  Please read my other posting a few minutes ago to another person here.

    Also keep in mind that the system has a lot of patients waiting for surgery.  They take the most urgent people first.  And sadly there are too many people needing surgery..!

    It WILL be OK... trust me if you can... you CAN do this..!!!  There are other posts here that relate what the surgery is like and what to expect.  Do a search and then many questions will be answered by many different people.  Keep in mind that if you wish to reply to something, if the post is old, that person may not come here very often or may of moved on.  Many times people with low stage and grade tumors get beyond the Cancer fear and go on with their lives.. nice.!

    Ron

  • Melliebean
    Melliebean Member Posts: 53
    GSRon said:

    Yes, Mellie, it is clear you

    Yes, Mellie, it is clear you are a bit on edge.  Nothing we can say will stop that.. only YOU can stop it.. hard to do, I know.  I noticed in your last post, your hubby went with you, but sounds like he was not with you during the doctor part.. WHY..?  It is a very good thing to have someone with you during the doctor chat, that person can write down your questions to ask before the visit, and take notes during the visit.  Often the patient is not clear headed enough to do it alone.  Remember two heads are better than one..!

    The wait, not unusual.  Especially since your tumor is on the small side of things.  Please read my other posting a few minutes ago to another person here.

    Also keep in mind that the system has a lot of patients waiting for surgery.  They take the most urgent people first.  And sadly there are too many people needing surgery..!

    It WILL be OK... trust me if you can... you CAN do this..!!!  There are other posts here that relate what the surgery is like and what to expect.  Do a search and then many questions will be answered by many different people.  Keep in mind that if you wish to reply to something, if the post is old, that person may not come here very often or may of moved on.  Many times people with low stage and grade tumors get beyond the Cancer fear and go on with their lives.. nice.!

    Ron

    Hubby

    He went with me but there hasn't been an appt since the diagnosis. I went in and they order me the second catscan. They ordered the biopsy gave the results by phone said I needed surgery by phone and called to say when by phone. But the haven't set up an appt to see me to explain or discuss anything. He was a bit concered the dif in size between the 1st and the 2nd scan and that's why I thought the dr sounded more urgent. 

  • APny
    APny Member Posts: 1,995 Member

    Hubby

    He went with me but there hasn't been an appt since the diagnosis. I went in and they order me the second catscan. They ordered the biopsy gave the results by phone said I needed surgery by phone and called to say when by phone. But the haven't set up an appt to see me to explain or discuss anything. He was a bit concered the dif in size between the 1st and the 2nd scan and that's why I thought the dr sounded more urgent. 

    Mellie, unless I misread your

    Mellie, unless I misread your post in the other thread the initial measure was 3.9 cm and the second was 4.2 cm. I'm no doctor but that doesn't seem like a big difference. In inches it would be 1.5 inches vs 1.6 inches. Did the doctor express concern about the size difference? Either way, it's a small tumor and very unlikely to make a difference even if your surgery is not immediately. But you really do need to go in and sit down with the doctor so he explain everything instead of doing it over the phone. It's much easier to clarify things in person. Call the doctor and make an appoinment to discuss everything that is worrying you. The surgery part is not horrible at all. I had a partial and supposedly that's more complicated than a full nephrectomy and the pain was very manageable and I was out of the hospital in two days. I was terrified of being in pain, etc., but it wasn't nearly as bad as I had feared. Your mind is your worst enemy. You'll be fine, I promise!

  • twinthings
    twinthings Member Posts: 409
    Mellie, I think you can take

    Mellie, I think you can take what Ron said, to the bank.  That said, I would not book my surgery over the phone without first meeting with the doctor to find out what his surgical plan for your particular situation is.  Do you know if he will be doing a partial or full neph?  Size doesn't always matter in terms of one procedure over the other.  My tumor was small too, at 4.7cm but was situated in a bad spot, butting right up to the renal vein with "possible invasion".  My doctor told me if I were his daughter, knowing what he knows, he'd take the whole kidney.  That was good enough for me.  That's how I want every doctor to treat me...the way he'd treat his loved one. 

    He should tell you what he plans and why he's reached that conclusion.  Also, he should explain the procedure in terms of size of incision and how long you will likely be in the hospital.  I agree that increase in size is minimal, at best. 

    If I were you, I'd call his office and schedule a consult.  There's nothing to lose in doing so and it will likely put your mind at ease...somewhat.  I know 2 months seems like a long time to wait for surgery but, it likely means you can afford to wait based on the tests he's done and the location of the tumor.  Try not to stress yourself too much, you'll need all the energy you can muster, for your recovery. 

    I'm sorry you're going thru this and I know how scared you are.  The good news is, for most of us, surgery is the cure.  I pray it will be no different for you. 

    Keep your chin up!

    Sindy

  • icemantoo
    icemantoo Member Posts: 3,360 Member

    Mellie, I think you can take

    Mellie, I think you can take what Ron said, to the bank.  That said, I would not book my surgery over the phone without first meeting with the doctor to find out what his surgical plan for your particular situation is.  Do you know if he will be doing a partial or full neph?  Size doesn't always matter in terms of one procedure over the other.  My tumor was small too, at 4.7cm but was situated in a bad spot, butting right up to the renal vein with "possible invasion".  My doctor told me if I were his daughter, knowing what he knows, he'd take the whole kidney.  That was good enough for me.  That's how I want every doctor to treat me...the way he'd treat his loved one. 

    He should tell you what he plans and why he's reached that conclusion.  Also, he should explain the procedure in terms of size of incision and how long you will likely be in the hospital.  I agree that increase in size is minimal, at best. 

    If I were you, I'd call his office and schedule a consult.  There's nothing to lose in doing so and it will likely put your mind at ease...somewhat.  I know 2 months seems like a long time to wait for surgery but, it likely means you can afford to wait based on the tests he's done and the location of the tumor.  Try not to stress yourself too much, you'll need all the energy you can muster, for your recovery. 

    I'm sorry you're going thru this and I know how scared you are.  The good news is, for most of us, surgery is the cure.  I pray it will be no different for you. 

    Keep your chin up!

    Sindy

    Scared is normal

    Millie,

    There is not one of us on this board who when we first heard we have Kidney Cancer that was not scared. And to top it off they start with this not to fun surgery where they want to remove a kidney. The C word is bad enough but who ever heard of Kidney Cancer and than to start with major surgery to boot. Well that was 12 years ago and you just do not forget those magical moments.

     

    While there is no way to sugar coat the surgery those of us with relatively small tumors are for the most part cured after the surgery. Mine was 4.2 cm, 

     

    You will be fine. Sorry you had to join our ckub, but you are welcome with open arms.

     

    Icemantoo

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Hi Mellie

    I'm really sorry that you are going through this.  I understand quite well the worry and stress.  I would like to say that if I was in your shoes, I would ask the doctor why the appointment is being scheduled for August.  That's just me though.  I ask a bunch of questions.  I would also ask if it could be moved up and that you are willing to do it sooner if there is a cancellation. 

    When my husband was in the hospital because of hematuria, he was diagnosed with the kidney mass.  A local urological surgeon wanted to remove his kidney immediately.  I asked him "how many of these have you done?".  He basically had a hissy-fit.  We live in a small town.  Upon discharge from the hospital we saw our primary care provider who made an appointment for my husband at a major medical center with a renal cancer specialist/surgeon and a renal oncologist.  Our primary care doc is the greatest advocate for us.  He got us an appointment in less than a week.   It was a 3 hour drive for us.  We felt that it was important to see someone who is experienced. 

    My husbands tumor was 5 cm and he was diagnosed at Stage 4 due to mets to bone and a lymph node.  His grade is grade 3 out of 4, which is reflective of how advanced, or mutated the kidney cancer cells are when compared with normal kidney cells.  The lower the number the better.  He is also Clear Cell RCC like you. 

    All of this happened 2 1/2 years ago.  He is doing pretty well.  His scans for about a year and a half now show no evidence of metabolic activity. 

    Anyway, noone can tell you if it's okay to wait that long.  You have to do what you feel right about with the surgeon/doctor that you have faith in.  You can only do your best at any given moment with the information that you have, and with the resources that you have.  Take it easy Mellie.  I'm really glad you found this site for all the support that people here give.  Another good site for information is Smart Patients. 

    I will be thinking of you and hoping for the very best. 

    Annie

  • Melliebean
    Melliebean Member Posts: 53
    APny said:

    Mellie, unless I misread your

    Mellie, unless I misread your post in the other thread the initial measure was 3.9 cm and the second was 4.2 cm. I'm no doctor but that doesn't seem like a big difference. In inches it would be 1.5 inches vs 1.6 inches. Did the doctor express concern about the size difference? Either way, it's a small tumor and very unlikely to make a difference even if your surgery is not immediately. But you really do need to go in and sit down with the doctor so he explain everything instead of doing it over the phone. It's much easier to clarify things in person. Call the doctor and make an appoinment to discuss everything that is worrying you. The surgery part is not horrible at all. I had a partial and supposedly that's more complicated than a full nephrectomy and the pain was very manageable and I was out of the hospital in two days. I was terrified of being in pain, etc., but it wasn't nearly as bad as I had feared. Your mind is your worst enemy. You'll be fine, I promise!

    He did

    The doctor did express concern a bit, but then did say maybe it was just misread the first time. The scans were like 12 days apart. I did read a bit about the growth rate and read it is supposed to be slow something like .5 cm a year or six months, but for me this doesn't really add up. In September 2012 I had to have 2 ct scans and an MRI in October of 2012 I had to have another. At the time of these scans nothing was on my kidney so the .5 doesn't really add up for me. Which I know everyone will be different.

    i did though have an appt with my family doctor today. She and I have been through the ringer together.. And I really felt comfortable talking to her. I was able to ask her most of the questions That I wanted answered. She doesn't really think the September date sounds right either and is going to talk to the urologist on Monday. 

    i know the urologist did tell me a bit yesterday morning about how it will probably be done a full nepherectomy from the side. Mainly because I have something going on with the veins in my abdomen. Not sure how that is going to affect the abdominal hernia repair at the same time now.  

    My blood pressure was 200/90 when I went in today so above was right I have been on edge. I have something for my anxiety now so the whole being on edge thing is worked out hopefully. They had to keep me around the office till it went down. I don't have high blood pressure so I just had to wooosaa.

  • Melliebean
    Melliebean Member Posts: 53

    Mellie, I think you can take

    Mellie, I think you can take what Ron said, to the bank.  That said, I would not book my surgery over the phone without first meeting with the doctor to find out what his surgical plan for your particular situation is.  Do you know if he will be doing a partial or full neph?  Size doesn't always matter in terms of one procedure over the other.  My tumor was small too, at 4.7cm but was situated in a bad spot, butting right up to the renal vein with "possible invasion".  My doctor told me if I were his daughter, knowing what he knows, he'd take the whole kidney.  That was good enough for me.  That's how I want every doctor to treat me...the way he'd treat his loved one. 

    He should tell you what he plans and why he's reached that conclusion.  Also, he should explain the procedure in terms of size of incision and how long you will likely be in the hospital.  I agree that increase in size is minimal, at best. 

    If I were you, I'd call his office and schedule a consult.  There's nothing to lose in doing so and it will likely put your mind at ease...somewhat.  I know 2 months seems like a long time to wait for surgery but, it likely means you can afford to wait based on the tests he's done and the location of the tumor.  Try not to stress yourself too much, you'll need all the energy you can muster, for your recovery. 

    I'm sorry you're going thru this and I know how scared you are.  The good news is, for most of us, surgery is the cure.  I pray it will be no different for you. 

    Keep your chin up!

    Sindy

    Thanks

    Yes I need to sit down with him. My family Dr answered a lot of my general questions today so that helped some. He told me last night a full nepherectomy from the side but other than that nothing about how big the insision would be or hiw long the stay would be.  The reason for the full is because of the bleeding and he said it is embeeded pretty deep into the kidney and the best bet is take it all because of blood vessels or bleeding something like that.

  • Melliebean
    Melliebean Member Posts: 53
    a_oaklee said:

    Hi Mellie

    I'm really sorry that you are going through this.  I understand quite well the worry and stress.  I would like to say that if I was in your shoes, I would ask the doctor why the appointment is being scheduled for August.  That's just me though.  I ask a bunch of questions.  I would also ask if it could be moved up and that you are willing to do it sooner if there is a cancellation. 

    When my husband was in the hospital because of hematuria, he was diagnosed with the kidney mass.  A local urological surgeon wanted to remove his kidney immediately.  I asked him "how many of these have you done?".  He basically had a hissy-fit.  We live in a small town.  Upon discharge from the hospital we saw our primary care provider who made an appointment for my husband at a major medical center with a renal cancer specialist/surgeon and a renal oncologist.  Our primary care doc is the greatest advocate for us.  He got us an appointment in less than a week.   It was a 3 hour drive for us.  We felt that it was important to see someone who is experienced. 

    My husbands tumor was 5 cm and he was diagnosed at Stage 4 due to mets to bone and a lymph node.  His grade is grade 3 out of 4, which is reflective of how advanced, or mutated the kidney cancer cells are when compared with normal kidney cells.  The lower the number the better.  He is also Clear Cell RCC like you. 

    All of this happened 2 1/2 years ago.  He is doing pretty well.  His scans for about a year and a half now show no evidence of metabolic activity. 

    Anyway, noone can tell you if it's okay to wait that long.  You have to do what you feel right about with the surgeon/doctor that you have faith in.  You can only do your best at any given moment with the information that you have, and with the resources that you have.  Take it easy Mellie.  I'm really glad you found this site for all the support that people here give.  Another good site for information is Smart Patients. 

    I will be thinking of you and hoping for the very best. 

    Annie

    Thank you so much

    I am glad I found this site. I am trying to be much more proactive with my healh care because I had a very bad experience with my last surgery. I more or less just followed what they said like a puppy dog and didnt go into that surgery asking enough questions or stressing to the surgeon some of my medical issues that may creep Up.

    My primary care Dr is who discovered the hematurra in my urine. Microscopic And ordered the first Cat scan we have been through a lot together. I did have an appt today with her and she explained a lot of the things that were on my mind. And she is gonna make sure things get done.

    the grade of the tumor on my report said it was 3-4 out of 1-4 but I'm not really sure what that mean.

    ive heard everyone talk about mets and one of my questions today was when do we do the tests to check other areas of my body. She said well I am sure you will need some. And said she didn't know if they were done before or after surgery each dr is different. But that's something that was on my mind.

    thanks to everyone who has took the time to listen to me and help me. I may have many more questions. Annie I hope your husband. continues to stay met free. I hope maybe someday after all is said and done and I know some answers maybe I can help someone like me.

     

  • GSRon
    GSRon Member Posts: 1,303

    Thank you so much

    I am glad I found this site. I am trying to be much more proactive with my healh care because I had a very bad experience with my last surgery. I more or less just followed what they said like a puppy dog and didnt go into that surgery asking enough questions or stressing to the surgeon some of my medical issues that may creep Up.

    My primary care Dr is who discovered the hematurra in my urine. Microscopic And ordered the first Cat scan we have been through a lot together. I did have an appt today with her and she explained a lot of the things that were on my mind. And she is gonna make sure things get done.

    the grade of the tumor on my report said it was 3-4 out of 1-4 but I'm not really sure what that mean.

    ive heard everyone talk about mets and one of my questions today was when do we do the tests to check other areas of my body. She said well I am sure you will need some. And said she didn't know if they were done before or after surgery each dr is different. But that's something that was on my mind.

    thanks to everyone who has took the time to listen to me and help me. I may have many more questions. Annie I hope your husband. continues to stay met free. I hope maybe someday after all is said and done and I know some answers maybe I can help someone like me.

     

    Mellie.. I think all of this

    Mellie.. I think all of this is sinking in.,..good..  We all know how hard it is before the surgery... and as we are all different we all have different concerns about it all.  What is important is that you have the right surgeon.  It is OK to check this surgeon out... use the internet, find out his/her credentials.  Yes there are things you CAN control.!  I would not be concerned if you need to travel a bit further to get a better surgeon for you.. plus that may move the date up.  Take the time to search around..  Another pre-surgery patient just booked himself to get in to the NIH, the best there is..  That means two air plane rides each way for him..  So do some checking and see what you find... no penalty there..!   I was lucky, I was referred to one of the best in the country only 2 hours drive..   And once I read about him, I KNEW I was in the right hands... Yes I was still scared and a blubbery idiot at times, but I knew I would get great care..!  Unlike many, when my surgery got postponed, I was a bit happy... the thought of surgery scared the cr** out of me..

    I gotta tell you, that once I woke up after the surgery, I felt like I just conquered the world.!

    OK a few things you need to know.. you should get choices on pain drugs.. either an epidural or a "button".  I can't say which is better, your call.  Unless you can find someone that has had both, then we all have only a one sided opinion.  And because there will be some pain, as soon as you feel it coming on, holler..!  They will give you a booster shot, but it takes time to kick in.. so do not wait for it to really hurt.   That said, some people had like no pain, a simple Tylenol is all they took, lucky dogs..!!  Next is getting out of bed.. the sooner you can stand, the sooner you get to go home.  Oh yes, and there is the gassy part.. do not hold back..  and same with that first bowel movement.. all of that gets you home sooner..!

    The hospital I was in, was more like a 5 star Hotel... I had a phone and a menu.. could order my food and it would show up, all nicely prepared and tasty..!  Much better than airplane food..!!  Oh and I even could order multiple things... and they would reduce the portions so I would not over do my limits (they knew)..  So I had two half sized deserts... yumm..  Sorry, I do miss their food..!!  Cool

    And once you get home.. no matter how good you feel, it can take about 6 months for your insides to heal... do NOT over do it.. you will be sorry if you do... no picking up the kids... sorry..  Walking is good.. keep walking...  water is your new best friend... adjust the diet a bit.   Oh.. dare I tell you..?  Do not be surprized if you end up a bit lopsided..  My navel is off center by about an inch... I laugh at it...

    Ron

  • Karen0074
    Karen0074 Member Posts: 64
    GSRon said:

    Mellie.. I think all of this

    Mellie.. I think all of this is sinking in.,..good..  We all know how hard it is before the surgery... and as we are all different we all have different concerns about it all.  What is important is that you have the right surgeon.  It is OK to check this surgeon out... use the internet, find out his/her credentials.  Yes there are things you CAN control.!  I would not be concerned if you need to travel a bit further to get a better surgeon for you.. plus that may move the date up.  Take the time to search around..  Another pre-surgery patient just booked himself to get in to the NIH, the best there is..  That means two air plane rides each way for him..  So do some checking and see what you find... no penalty there..!   I was lucky, I was referred to one of the best in the country only 2 hours drive..   And once I read about him, I KNEW I was in the right hands... Yes I was still scared and a blubbery idiot at times, but I knew I would get great care..!  Unlike many, when my surgery got postponed, I was a bit happy... the thought of surgery scared the cr** out of me..

    I gotta tell you, that once I woke up after the surgery, I felt like I just conquered the world.!

    OK a few things you need to know.. you should get choices on pain drugs.. either an epidural or a "button".  I can't say which is better, your call.  Unless you can find someone that has had both, then we all have only a one sided opinion.  And because there will be some pain, as soon as you feel it coming on, holler..!  They will give you a booster shot, but it takes time to kick in.. so do not wait for it to really hurt.   That said, some people had like no pain, a simple Tylenol is all they took, lucky dogs..!!  Next is getting out of bed.. the sooner you can stand, the sooner you get to go home.  Oh yes, and there is the gassy part.. do not hold back..  and same with that first bowel movement.. all of that gets you home sooner..!

    The hospital I was in, was more like a 5 star Hotel... I had a phone and a menu.. could order my food and it would show up, all nicely prepared and tasty..!  Much better than airplane food..!!  Oh and I even could order multiple things... and they would reduce the portions so I would not over do my limits (they knew)..  So I had two half sized deserts... yumm..  Sorry, I do miss their food..!!  Cool

    And once you get home.. no matter how good you feel, it can take about 6 months for your insides to heal... do NOT over do it.. you will be sorry if you do... no picking up the kids... sorry..  Walking is good.. keep walking...  water is your new best friend... adjust the diet a bit.   Oh.. dare I tell you..?  Do not be surprized if you end up a bit lopsided..  My navel is off center by about an inch... I laugh at it...

    Ron

    mellie, I'm waiting for my op

    mellie, I'm waiting for my op just like you, the waiting is so hard. We can do this xx

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Info

    Mellie.  I wanted to share with you that there is good information right here on this site.  To the left of this page it says Cancer Information.  Click on that, then click on Learn About Cancer.  On "select a cancer type". Choose renal.  It will explain grading and staging etc..  It was helpful to me when I began this journey.

  • Melliebean
    Melliebean Member Posts: 53
    GSRon said:

    Mellie.. I think all of this

    Mellie.. I think all of this is sinking in.,..good..  We all know how hard it is before the surgery... and as we are all different we all have different concerns about it all.  What is important is that you have the right surgeon.  It is OK to check this surgeon out... use the internet, find out his/her credentials.  Yes there are things you CAN control.!  I would not be concerned if you need to travel a bit further to get a better surgeon for you.. plus that may move the date up.  Take the time to search around..  Another pre-surgery patient just booked himself to get in to the NIH, the best there is..  That means two air plane rides each way for him..  So do some checking and see what you find... no penalty there..!   I was lucky, I was referred to one of the best in the country only 2 hours drive..   And once I read about him, I KNEW I was in the right hands... Yes I was still scared and a blubbery idiot at times, but I knew I would get great care..!  Unlike many, when my surgery got postponed, I was a bit happy... the thought of surgery scared the cr** out of me..

    I gotta tell you, that once I woke up after the surgery, I felt like I just conquered the world.!

    OK a few things you need to know.. you should get choices on pain drugs.. either an epidural or a "button".  I can't say which is better, your call.  Unless you can find someone that has had both, then we all have only a one sided opinion.  And because there will be some pain, as soon as you feel it coming on, holler..!  They will give you a booster shot, but it takes time to kick in.. so do not wait for it to really hurt.   That said, some people had like no pain, a simple Tylenol is all they took, lucky dogs..!!  Next is getting out of bed.. the sooner you can stand, the sooner you get to go home.  Oh yes, and there is the gassy part.. do not hold back..  and same with that first bowel movement.. all of that gets you home sooner..!

    The hospital I was in, was more like a 5 star Hotel... I had a phone and a menu.. could order my food and it would show up, all nicely prepared and tasty..!  Much better than airplane food..!!  Oh and I even could order multiple things... and they would reduce the portions so I would not over do my limits (they knew)..  So I had two half sized deserts... yumm..  Sorry, I do miss their food..!!  Cool

    And once you get home.. no matter how good you feel, it can take about 6 months for your insides to heal... do NOT over do it.. you will be sorry if you do... no picking up the kids... sorry..  Walking is good.. keep walking...  water is your new best friend... adjust the diet a bit.   Oh.. dare I tell you..?  Do not be surprized if you end up a bit lopsided..  My navel is off center by about an inch... I laugh at it...

    Ron

    Surgery

    Surgery scares the crud out of me too. The last one I had was a doosey and wound me up in the hospital for a total of 33  days. 9 days then re-admission 15 days later.  And it wasn't to far in the distant past. I more or less had to have three surgeries to fix a seroma and infection after my hysterectomy it left me with an open wound that had to heal from the inside out that was 16 cm by 12 cm and 9 cm deep. I also had the kidney injury which had me in the ICU three day.  So the thought of being cut on again is scary. I had to have two pints of blood two pints of plasma and woke up from my second surgery still in recovery to them telling me we need you to relax we can't get the blood to stop we have called the dr back and he has to come cautaurize the vessels so you are going back under.  I went home with a wound vac after I left the hospital and had to go to wound care once a week and have home health invade my home twice a week for three months after. 

    I am going to a different hospital this time though and let me tell ya I know for a fact the foods better in it lol. Same thing you mentioned phone and menu etc.

    this time though like I told my family doctor I am being proactive asking more questions.  If I point something out thats not right like I did my seroma previously I am going to be sure the doctor takes me more serious so it's not left to the point it's infected and profusely leaking. He had thought my body would re-absorb it. Most bodies do- (lymphedema).

    But I have to swallow my fear of the surgery because there is no other choice. A close friend told me she thinks the above was preparing me for what's to come and she is most likely right.

    i will have to remeber not to do any picking up though. I think that is why I have the hernia now.

     

  • Melliebean
    Melliebean Member Posts: 53
    Karen0074 said:

    mellie, I'm waiting for my op

    mellie, I'm waiting for my op just like you, the waiting is so hard. We can do this xx

    Yes

    Yes we can! I'll wait with you.

  • Melliebean
    Melliebean Member Posts: 53
    a_oaklee said:

    Info

    Mellie.  I wanted to share with you that there is good information right here on this site.  To the left of this page it says Cancer Information.  Click on that, then click on Learn About Cancer.  On "select a cancer type". Choose renal.  It will explain grading and staging etc..  It was helpful to me when I began this journey.

    Thanks

    Thanks I have been reading a bunch of it. and I found a good resource to read about my feelings. I haven't been able to sleep at night since Wednesday so most my readings about now. I am hoping I don't make my family mad being tired again in the morning. I've been going off into my own little world thinking and a family member has gotten mad at me and told me to screw my head on because I wasn't focused on what they were saying. I felt guilty for that. I was like I have a lot to think about it's only been a few days just give me a short break. I've been doing a lot of reading. 

  • APny
    APny Member Posts: 1,995 Member

    Thanks

    Thanks I have been reading a bunch of it. and I found a good resource to read about my feelings. I haven't been able to sleep at night since Wednesday so most my readings about now. I am hoping I don't make my family mad being tired again in the morning. I've been going off into my own little world thinking and a family member has gotten mad at me and told me to screw my head on because I wasn't focused on what they were saying. I felt guilty for that. I was like I have a lot to think about it's only been a few days just give me a short break. I've been doing a lot of reading. 

    Mellie, being told you have

    Mellie, being told you have cancer and need surgery will make anyone’s head not be screwed on right. It’s natural to go off into your own little world and not be too focused on other things. No offense to your family member but it’s something they should understand, and if they don’t, it’s not something you should feel guilty for.

     

    I'm sorry you had such a horrific experience with your hysterectomy but that doesn't mean your kidney surgery will go the same way. It's not going to be pleasant but honestly, like I said before, it was a lot easier than I feared. I'm hoping yours will be the same way and you'll find yourself saying it wasn't as bad as I feared.

  • Melliebean
    Melliebean Member Posts: 53
    APny said:

    Mellie, being told you have

    Mellie, being told you have cancer and need surgery will make anyone’s head not be screwed on right. It’s natural to go off into your own little world and not be too focused on other things. No offense to your family member but it’s something they should understand, and if they don’t, it’s not something you should feel guilty for.

     

    I'm sorry you had such a horrific experience with your hysterectomy but that doesn't mean your kidney surgery will go the same way. It's not going to be pleasant but honestly, like I said before, it was a lot easier than I feared. I'm hoping yours will be the same way and you'll find yourself saying it wasn't as bad as I feared.

    Thanks

    Thanks. I'm glad yours went well. Mine will. My mind is in a much more positive place today.  I'm gonna roll with what comes.

    Not falling asleep at night is doing me in but that will probably fix in a few days.

    I sent my family member some information today and to my surprise he read it so I think things will get better there. I want to thank everyone for their help. You all have been through so much and being here helping others means a lot. Thank you. I'm waiting tomorrow for another call on my surgery. My mom was like are you going to call and remind them first thing. I was like no I am going to be patient if they don't call me by three thirty or four then I will. No more frantic patient!

    Im probably going to get my feeling hurt by caring friends and family more than once so I need to make up my mind now just to educate them and realize how they are feeling too.

  • dhs1963
    dhs1963 Member Posts: 513

    Thanks

    Thanks. I'm glad yours went well. Mine will. My mind is in a much more positive place today.  I'm gonna roll with what comes.

    Not falling asleep at night is doing me in but that will probably fix in a few days.

    I sent my family member some information today and to my surprise he read it so I think things will get better there. I want to thank everyone for their help. You all have been through so much and being here helping others means a lot. Thank you. I'm waiting tomorrow for another call on my surgery. My mom was like are you going to call and remind them first thing. I was like no I am going to be patient if they don't call me by three thirty or four then I will. No more frantic patient!

    Im probably going to get my feeling hurt by caring friends and family more than once so I need to make up my mind now just to educate them and realize how they are feeling too.

    not sleeping

    Before surgery, there is nothing wrong with getting a perscription for sleep/anxiety medicine.  It is temporary to allow you to be in the best position to heal.

     

     

  • rainsandpours
    rainsandpours Member Posts: 136
    dhs1963 said:

    not sleeping

    Before surgery, there is nothing wrong with getting a perscription for sleep/anxiety medicine.  It is temporary to allow you to be in the best position to heal.

     

     

    Hi Mellie,
    I waited 7 months

    Hi Mellie,

    I waited 7 months from detection to surgery, and even then, the doctor's weren't concerned.  As my urologist explained it, as long as it's under 7 cm they don't rush things.  I had an Open Partial, and believe me, I was in no hurry.  I could have had surgery a month sooner, but I had a trip planned that was non refundable, so I choose to go.

     

    You'll be fine.  We all know the anxiety you're feeling.  Once you near your surgery date, it'll get easier.  Try to enjoy your summer and get as much exercise as possible to make recovery better.

     

    Hugs, thinking of you.

     

  • aamdsi
    aamdsi Member Posts: 284
    try to enjoy

    The summer as much as you can.  Keep walking and getting plenty of exercise - that will help the non-sleeping a bit too.  It will also ease getting back to "normal" afterward.

    Anxiety is almost a good thing, for if you weren't a bit nervious and such about all this, I doubt you would ask all the questions that should be asked.

    I found the waiting for the surgery harder than the surgery and recovery afterward!  I had an open partial in March.  Had a worse time with the pain meds they were giving me (I was trying to get them to stop, didn't need them at all) than anything else.  Once out of the hospital - walk, walk and walk some more.  Moving around helps everything from pain to getting the insides moving (if ya know what I mean).

    NO PICKING ANYTHING OR ANYONE UP!  Now that was hard - but trust me, it's harder if you make the mistake and do it 8-(. Wait the 2 months (or what they tellyou to).  I did, however, use 5 lb weights to keep my arms and shoulders in shape (they were apporved) and it made me feel better.

     

    Once the staples (or whatever they use) are removed even the incision will start getting back to its new normal.

    You will get through this.  I found this site to be very helpful in doing just that!  People here are from all walks and at least one oterh person will have gone through whatever you may be feeling and they will help.

    Hugs to you. Now go enjoy some sunshine (raining here ...again)

    Laurie