Scared

Hello Everyone,

I just joined this site because I was browsing for information and found many answers on here. I am a 42 year old woman and I have a 1 inch tumor on my right kidney and it has to be removed. I will be scheduling a robotic partial nephrectomy soon but am really scared. Do you all have any advice or stories that you can share good or bad that will help me know what to expect and how to prepare for life after the surgery. It sounds like I will be out of work for about a month and it will be very painful during the recovery period. Should I be prepared to sleep in a recliner instead of my bed? 

Any help would be so appreciated

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Comments

  • sblairc
    sblairc Member Posts: 585
    Welcome

    Hi and welcome. I joined this forum last month and everyone here is so nice and extremely knowledgable. I am 38 and I come here for information and support for my 47 year old husband that had a robotic radical left nephrectomy almost 6 months ago. He was in the hospital for a few days after his surgery. The great thing about robotic is that you have small incisions, tiny ones really. That will help the healing process and I understand that means recovery time is lessened. He had no problem sleeping in the bed and as long as he followed a regular schedule for his post operative pain meds his pain was reasonable and well managed. He tired easily and napped a lot which I think is to be expected. Walking was very important and we did that regularly at short intervals until he could do longer ones. 

    We didn't want a tonne of people visiting during flu season. I made a sign and taped it to the door to keep people from visiting. Othewise, the nurses just told everyone to "come on in" and my husband didn't want a tonne of people in and out. We didn't know that was how it worked so if you want privacy, get someone to tape a sign to the door. I'm sure others will pop in with some advice this is a great place to be for information and support. 

     

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    sblairc said:

    Welcome

    Hi and welcome. I joined this forum last month and everyone here is so nice and extremely knowledgable. I am 38 and I come here for information and support for my 47 year old husband that had a robotic radical left nephrectomy almost 6 months ago. He was in the hospital for a few days after his surgery. The great thing about robotic is that you have small incisions, tiny ones really. That will help the healing process and I understand that means recovery time is lessened. He had no problem sleeping in the bed and as long as he followed a regular schedule for his post operative pain meds his pain was reasonable and well managed. He tired easily and napped a lot which I think is to be expected. Walking was very important and we did that regularly at short intervals until he could do longer ones. 

    We didn't want a tonne of people visiting during flu season. I made a sign and taped it to the door to keep people from visiting. Othewise, the nurses just told everyone to "come on in" and my husband didn't want a tonne of people in and out. We didn't know that was how it worked so if you want privacy, get someone to tape a sign to the door. I'm sure others will pop in with some advice this is a great place to be for information and support. 

     

    Scared

    Stephanie,

    Being told that you have Cancer and that you are having major surgery is enough to scare the s--t out of anyone. It sure scared me almost 12 years ago when I found out at a then young 59. It also scared Faye across the street when she was 64. She is 82 now.

    Like you mine was about 2.54 cm (1") when discovered although 4. 2 cm after it was out.

    The surgery is anything but fun, but at 42 you should have it easier than most.

    Your chances for a full cancer free recovery with such a small tumor are as good as they get.

    Yes, you are going to be uncomfortable for awhile after the surgery, but it beats the alternative.

    Icemantoo

  • Skagway Jack
    Skagway Jack Member Posts: 224
    Welcome

    We all have the distinction here of loosing some or all of a kidney. This dubious honor will make you at home with the folks here.  I had a full right nephrectomy via open surgery. I got a whopper of a scar and I nick named it the "freak show". I slept on a recliner for about 2 -3 weeks. I went back to work by 4 weeks, but that varies a lot depending on your employment and health variables.  Pain is an individual thing.  In my case I used pain meds for two days in the hospital.  I had them pull the morphine drip at about 48 hours, and I quit using tylenol by the end of the first week.  Havent had any pain meds since then, roughly 6 months ago.   I still have numbness in the stitches, occassionally some minor back pain, but overall I would say i feel great. Robotic  surgery is less invasive so you will do great, just keep a positive attitude and the rest will take care of its self. 

     

  • Darron
    Darron Member Posts: 310
    Start with the best

    I'll start with the beat coincidence. A good friend of mind, also Stephanie, had a 3 cm removed with a radical just about 61/2 years ago. It was comforting for me when I was diagnosed to have a friend that had been thru it. You now have about 1000 experienced friends on line. She has been cancer free since surgery, as you will be as well. 

    Surgery is painful, but not unbearable. The wits pain was from the gas that was in my abdomin mode up to my shoulder. Just a solid ache that wouldn't go away. Take it slow, deunk lots of water, walk as soon as you can, slowly and don't over do it. You will be fine.

    I had a hand assisted radical for a 17 cm tumor, and I was back at my desk job in about three weeks. That is pretty quick, and I didn't do 100% full days starting off. I was able to sleep in bed. Getting in and out if bed was the hard part, laying down was easy.

    it is normal to be scared, but have faith and confidence that you will be well soon. Ask your new friends all the questions you need. We are here to help and support.

     

     

  • GSRon
    GSRon Member Posts: 1,303
    Darron said:

    Start with the best

    I'll start with the beat coincidence. A good friend of mind, also Stephanie, had a 3 cm removed with a radical just about 61/2 years ago. It was comforting for me when I was diagnosed to have a friend that had been thru it. You now have about 1000 experienced friends on line. She has been cancer free since surgery, as you will be as well. 

    Surgery is painful, but not unbearable. The wits pain was from the gas that was in my abdomin mode up to my shoulder. Just a solid ache that wouldn't go away. Take it slow, deunk lots of water, walk as soon as you can, slowly and don't over do it. You will be fine.

    I had a hand assisted radical for a 17 cm tumor, and I was back at my desk job in about three weeks. That is pretty quick, and I didn't do 100% full days starting off. I was able to sleep in bed. Getting in and out if bed was the hard part, laying down was easy.

    it is normal to be scared, but have faith and confidence that you will be well soon. Ask your new friends all the questions you need. We are here to help and support.

     

     

    Hi Stef... scared..?

    Hi Stef... scared..?  Really..?  You bet..!  All of us were scared big time..!!!  The fear is far worse than the reality... trust me on that one please..!  Your tumor is tiny compared to many here.  This means you most likely will be Cancer free... but I gotta tell it like it is.. it could come back.. you are most likely in the high 90+ percent range but no one is 100%.  You will need follow up.. do it..!  Kidney Cancer (rcc) is sneaky.  On the surgery, with the procedure you are getting, then you may be pain free just hours after surgery.  They will give you pain meds, take them as needed..!  Yes you will need to rest up, and you will be tired a lot and sleep a lot.  Even once you feel good, you must not do anything strenuous for at least a month.  You may feel healed but your body may not be fully healed on the inside.

    What is important, is that you have the right doctor and surgeon.  This is extremely important.. find out how many of these surgeries this doctor has done.  You do not want a small town doctor, that won't do.  Like I stated, rcc is sneaky... and you do not want anything to be missed.

    Good Luck... holler back at us any time you feel the need... lots of good folks here to help you...

    Ron

  • garym
    garym Member Posts: 1,647
    Welcome to the club...

    Hi Stef,

    It may not seem like it, but you are very fortunate to have been diagnosed at such an early stage, the odds that you will be and remain cancer free following surgery are nearly 100%. Everyone here has been right where you are, we understand what you are going through, and we're here to help any way we can. This is not going to be as bad as your imagination will make it out to be, keep your mind off it be staying busy, and daily exercise starting now will be a big help during recovery. At only 42 you can look forward to another 50 years of living.

    Godspeed,

    Gary

  • nsb748
    nsb748 Member Posts: 89
    garym said:

    Welcome to the club...

    Hi Stef,

    It may not seem like it, but you are very fortunate to have been diagnosed at such an early stage, the odds that you will be and remain cancer free following surgery are nearly 100%. Everyone here has been right where you are, we understand what you are going through, and we're here to help any way we can. This is not going to be as bad as your imagination will make it out to be, keep your mind off it be staying busy, and daily exercise starting now will be a big help during recovery. At only 42 you can look forward to another 50 years of living.

    Godspeed,

    Gary

    Stephanie, 
    if you are

    Stephanie, 

    if you are looking for support and knowledge you have come to the right place.  I actually have my partial nephrectomy today in about 4 hours.  From reading everyone's stories in here, and talking to people, I have gone from terrified, to mildly annoyed.  I'm sure you will do the same.  

    you will be just fine, and should be able to look back and laugh about this later in life

     

     

     

  • foxhd
    foxhd Member Posts: 3,181
    nsb748 said:

    Stephanie, 
    if you are

    Stephanie, 

    if you are looking for support and knowledge you have come to the right place.  I actually have my partial nephrectomy today in about 4 hours.  From reading everyone's stories in here, and talking to people, I have gone from terrified, to mildly annoyed.  I'm sure you will do the same.  

    you will be just fine, and should be able to look back and laugh about this later in life

     

     

     

    I just wrote this to nsb

    now I think I'll permanantly cpoy this to all new nephrectomy patients.



    Go get'em Steph! I've been here so long now, that I don't get concerned or worried when people are scheduled for nephrectomies. I get excited for them. It may very well be the most important thing they ever do for themselves and their families. I may be a little warped. (ok alot warped). But when people are frightened of the procedure and the pain, I smile. We've all been there. It gets better.

    Make sure you get an oncologist, regardless of what your primary or surgeon says.

  • garym
    garym Member Posts: 1,647
    icemantoo said:

    Scared

    Stephanie,

    Being told that you have Cancer and that you are having major surgery is enough to scare the s--t out of anyone. It sure scared me almost 12 years ago when I found out at a then young 59. It also scared Faye across the street when she was 64. She is 82 now.

    Like you mine was about 2.54 cm (1") when discovered although 4. 2 cm after it was out.

    The surgery is anything but fun, but at 42 you should have it easier than most.

    Your chances for a full cancer free recovery with such a small tumor are as good as they get.

    Yes, you are going to be uncomfortable for awhile after the surgery, but it beats the alternative.

    Icemantoo

    The iceman forgot to mention...

    His surgery was before the robot was invented...DaVinci had to do the surgery himselfWink

  • GSRon
    GSRon Member Posts: 1,303
    nsb748 said:

    Stephanie, 
    if you are

    Stephanie, 

    if you are looking for support and knowledge you have come to the right place.  I actually have my partial nephrectomy today in about 4 hours.  From reading everyone's stories in here, and talking to people, I have gone from terrified, to mildly annoyed.  I'm sure you will do the same.  

    you will be just fine, and should be able to look back and laugh about this later in life

     

     

     

    NSB, I like your attitude..!!

    NSB, I like your attitude..!!  "mildly annoyed".. love it... see you after the deed is done..

     

    Oh and Stef... in case you did not know, Gary is our resident comedian... and of course he delivers..! Laughing

    Ron

  • garym
    garym Member Posts: 1,647
    GSRon said:

    NSB, I like your attitude..!!

    NSB, I like your attitude..!!  "mildly annoyed".. love it... see you after the deed is done..

     

    Oh and Stef... in case you did not know, Gary is our resident comedian... and of course he delivers..! Laughing

    Ron

    Delivers???!!!

    CRAP...now fox is going to be calling me for pizza and beerFoot in Mouth

  • CommuterMom
    CommuterMom Member Posts: 120
    Hi Stephanie,
    I had a robotic

    Hi Stephanie,

    I had a robotic partial on 2/13/14 and was back and work on 2/24/14.  The pain for me only lasted a few days and mostly only hurt when getting up from a seated or lying position and when bending.  The incisons didn't really hurt much at all and are fading fast. 

    good luck!

    Diana

  • stephanie0913
    stephanie0913 Member Posts: 6
    Not as scared anymore

    Wow! I didn't expect so many great responses. You all have really made me feel much better. I feel crazy because I am active duty Air Force and I have a ton of responsibilities at work. I feel so guilty for feeling this way but this is the worse timing ever. I feel like I just don't have time to be sick right now. And I'm so used to taking care of everyone else and being so tough on the outside that I don't know how to express how truly terrified I am to those around me. I am single with no children and find it so hard to reach out for help. I am the one who helps everyone else so letting people see me in such a vulnerable state is hard. Your words of experience and kindness has soothed my spirit.

    I'm afraid to be vulnerable, of letting people down of being in pain of hearing that the cancer has spread or returned. There is a lot going on in my head right now and it seems that all of you have been there done that :) Thanks for sharing.

    As far as I know, my doctor is one of the top urologists and kidney cancer specialists in the country. I am happy that I was referred to him because the first doctor that the military sent me to was very unsure of himself. He is the one who referred me to the doctor that I am currently seeing. My surgery is scheduled for the 25th of this month and I have a lot of time to prepare myself for whatever happens.

  • stephanie0913
    stephanie0913 Member Posts: 6
    sblairc said:

    Welcome

    Hi and welcome. I joined this forum last month and everyone here is so nice and extremely knowledgable. I am 38 and I come here for information and support for my 47 year old husband that had a robotic radical left nephrectomy almost 6 months ago. He was in the hospital for a few days after his surgery. The great thing about robotic is that you have small incisions, tiny ones really. That will help the healing process and I understand that means recovery time is lessened. He had no problem sleeping in the bed and as long as he followed a regular schedule for his post operative pain meds his pain was reasonable and well managed. He tired easily and napped a lot which I think is to be expected. Walking was very important and we did that regularly at short intervals until he could do longer ones. 

    We didn't want a tonne of people visiting during flu season. I made a sign and taped it to the door to keep people from visiting. Othewise, the nurses just told everyone to "come on in" and my husband didn't want a tonne of people in and out. We didn't know that was how it worked so if you want privacy, get someone to tape a sign to the door. I'm sure others will pop in with some advice this is a great place to be for information and support. 

     

    sblairc

    Thank you for the kind words and support. I actually am battling the flu or bronchitis right now. I tried to get the doctor to schedule the surgery later (like next year...lol) because I have the flu right now but he informed me that I should be better in 3 weeks so let's press. :) I've read a lot of posts about people napping a lot or being really tired post surgery. Is this your bodies way of forcing you to rest so that it can heal or is it the meds that causes the fatigue?

    I will make sure that no one who is sick comes to visit. This has been a crazy winter season.

  • stephanie0913
    stephanie0913 Member Posts: 6

    Welcome

    We all have the distinction here of loosing some or all of a kidney. This dubious honor will make you at home with the folks here.  I had a full right nephrectomy via open surgery. I got a whopper of a scar and I nick named it the "freak show". I slept on a recliner for about 2 -3 weeks. I went back to work by 4 weeks, but that varies a lot depending on your employment and health variables.  Pain is an individual thing.  In my case I used pain meds for two days in the hospital.  I had them pull the morphine drip at about 48 hours, and I quit using tylenol by the end of the first week.  Havent had any pain meds since then, roughly 6 months ago.   I still have numbness in the stitches, occassionally some minor back pain, but overall I would say i feel great. Robotic  surgery is less invasive so you will do great, just keep a positive attitude and the rest will take care of its self. 

     

    Skagway Jack

    Thanks for the kind words. You've provided insight for me on what to expect. Unfortunately, I have low pain tolerance so I may be drugged up for weeks...but I always have an upbeat and positive attitude so I may be down but it never lasts for long. All I need is sunshine and fresh air to perk me up.

  • stephanie0913
    stephanie0913 Member Posts: 6
    Darron said:

    Start with the best

    I'll start with the beat coincidence. A good friend of mind, also Stephanie, had a 3 cm removed with a radical just about 61/2 years ago. It was comforting for me when I was diagnosed to have a friend that had been thru it. You now have about 1000 experienced friends on line. She has been cancer free since surgery, as you will be as well. 

    Surgery is painful, but not unbearable. The wits pain was from the gas that was in my abdomin mode up to my shoulder. Just a solid ache that wouldn't go away. Take it slow, deunk lots of water, walk as soon as you can, slowly and don't over do it. You will be fine.

    I had a hand assisted radical for a 17 cm tumor, and I was back at my desk job in about three weeks. That is pretty quick, and I didn't do 100% full days starting off. I was able to sleep in bed. Getting in and out if bed was the hard part, laying down was easy.

    it is normal to be scared, but have faith and confidence that you will be well soon. Ask your new friends all the questions you need. We are here to help and support.

     

     

    Darron

    You guys are so awesome. Thank you Darron for sharing your experience with gas. My aunt had surgery and gas was her biggest hurdle as she was recovering. I wouldn't have thought of it if you didn't post this. I will make sure to take walks(slow and short ones at first), drink plenty of water and stock up on ginger ale and gas-x. 

    Back to work in 3 weeks is amazing and thanks for telling me about the half days. Maybe if I have to return early I will but start off with half days. How have you been since the surgery?

  • stephanie0913
    stephanie0913 Member Posts: 6
    garym said:

    Welcome to the club...

    Hi Stef,

    It may not seem like it, but you are very fortunate to have been diagnosed at such an early stage, the odds that you will be and remain cancer free following surgery are nearly 100%. Everyone here has been right where you are, we understand what you are going through, and we're here to help any way we can. This is not going to be as bad as your imagination will make it out to be, keep your mind off it be staying busy, and daily exercise starting now will be a big help during recovery. At only 42 you can look forward to another 50 years of living.

    Godspeed,

    Gary

    Gary

    Thanks so much. I'm taking all the advice and getting ready. 50 more years huh? I hope so Smile

  • sblairc
    sblairc Member Posts: 585

    sblairc

    Thank you for the kind words and support. I actually am battling the flu or bronchitis right now. I tried to get the doctor to schedule the surgery later (like next year...lol) because I have the flu right now but he informed me that I should be better in 3 weeks so let's press. :) I've read a lot of posts about people napping a lot or being really tired post surgery. Is this your bodies way of forcing you to rest so that it can heal or is it the meds that causes the fatigue?

    I will make sure that no one who is sick comes to visit. This has been a crazy winter season.

    I think it's a combination of things

    I think it just takes a lot out of a body.  I also think his sleep being disrupted all the time in the hospital for 9-10 days didn't help the situation. He became nocturnal for several weeks post surgery.  I was glad his body was forcing him to rest because I was really afraid of becoming the "nap police" and really worried he would do too much and bust his internal stitches. My hubs is such an active guy I was afraid he would rush the recovery. It was a humbling experience for a person used to being in control of everything. Best of luck to you. 

  • GSRon
    GSRon Member Posts: 1,303

    Not as scared anymore

    Wow! I didn't expect so many great responses. You all have really made me feel much better. I feel crazy because I am active duty Air Force and I have a ton of responsibilities at work. I feel so guilty for feeling this way but this is the worse timing ever. I feel like I just don't have time to be sick right now. And I'm so used to taking care of everyone else and being so tough on the outside that I don't know how to express how truly terrified I am to those around me. I am single with no children and find it so hard to reach out for help. I am the one who helps everyone else so letting people see me in such a vulnerable state is hard. Your words of experience and kindness has soothed my spirit.

    I'm afraid to be vulnerable, of letting people down of being in pain of hearing that the cancer has spread or returned. There is a lot going on in my head right now and it seems that all of you have been there done that :) Thanks for sharing.

    As far as I know, my doctor is one of the top urologists and kidney cancer specialists in the country. I am happy that I was referred to him because the first doctor that the military sent me to was very unsure of himself. He is the one who referred me to the doctor that I am currently seeing. My surgery is scheduled for the 25th of this month and I have a lot of time to prepare myself for whatever happens.

    Oh yes.. as you can see a

    Oh yes.. as you can see a positive attitude helps...  I am one of the less lucky ones around here..  I thought I would not make it through the surgery.. WRONG..!  So, once I woke up I wanted to jump for joy.. !!  

    Now the pain part, the pain comes on fairly quick, so any hint of it coming on is when you want to start pushing the button for more drugs.. it takes time for the drugs to kick in, so you do not want to wait.  And really I expect it not to be that bad.. but we all are different.. you will just have to find out..!!

    On gas.. I had NO problems with gas.. now anyone that DARED to come in the room, well they had a problem for sure..!  Same with that first B.M., I had no trouble there either.. but could not get any privacy... heck the nurses had to evaluate the remains...  I do feel sorry for those nurses..!

    Speaking of nurses, it helps to be nice and friendly... (flirty in my case)..  I was not allowed to get food for several days, but I got popsickles at 3 AM..!!  I still remember how good those popsickles were..!  (I had the extra heavey duty surgery, yours will be a lot easier, guaranteed..!!)

    So now you see both ends of the surgery spectrum, we got Commuter Mom that was in and out so fast it is amazing.. me and a few others, well not so fast.. don't really matter..  Once the deed is done a big weight will be lifted off of you.. the sooner the better.  The waiting does not help..

    Oh yes, I do not think anyone mentioned water.. drink a ton of water from now until surgery time.. or when they tell you to stop.  Water is your friend, forever..!  

    And yes, getting up the first few days can be very painful.  In fact I quickly learned NOT to let the nurses touch the bed raise / lower functions.  Slow and easy works.. fast does not work.  So I took charge of the bed remote, moved it up real slow.. allowed my body to adjust...  That made it nice..!  Oh and the sooner you get up to walk the better, in more ways than one.  Walking helps the healing process, plus you get to use the bathroom instead of a bed pan.  Trust me the bed pan is awful..!  The second day they brought me a portable commode.. that worked, just zero privacy.. after that I walked to the bathroom, ah.. 

    Hang in there... you got like just over 2 weeks...  feel free to holler at us at any time..  Usually someone is here darn near 24/7.

    Sorry for the long...... message.......

    Ron

  • DSFrey
    DSFrey Member Posts: 69
    Its a piece of cake!

    Granted it might not be your favorite piece of cake, but the robotic surgery is quick and nearly painless. I had mine a couple weeks ago and was off the morphine drip within 2 days was home on the 3rd day and off prescription pain meds within 5 days. And the pain was never really that bad. Your body will generally let you know when you are about to push it too far. The only reason I'm not back at work yet is my employer wanted me to stay out the full 6 weeks so that I could return to my job without special provisions, since it generally involves some heavy lifting. So now I'm basically at a point were I'm largely healed, just no heavy lifting, and I'm getting paid for it too! A paid 6 week vacation is nearly what it amounts to in my case. Good luck!