Scared

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  • JoanneNH
    JoanneNH Member Posts: 115
    I had a laparoscopic full

    I had a laparoscopic full nephrectomy in September.  I'll give you some suggestions.   If the anesthesiologist offers an epidural, do it.   I went into the radiology suite, got onto a special bed, face down, and that is the last thing I remember until I woke up in the recovery room.   The epidural numbed the surgical site until they took it out.  I also had a button I could press if I needed pain med, but it turns out I really didn't need it with the epidural in.  After the epidural was taken out, I did have strong pain but I took oral pain meds at the max dose at the soonest allowed interval.  I told the nurses/doctors I wanted to keep on top of the pain and not let it get too far along before getting meds.  They totally agreed.  I was able to wean off of it within a week of being home.   I didn't get morphine or any of the oxys.  They decided to give me dilaudid.

    You will probably have a Foley catheter, but they put it in while I was out, assume it was in the OR, but I don't know for sure.  I thought it would be uncomfortable, but it wasn't.

    I had the head of the hospital bed raised up so I was semi-sitting up.  When I was in bed, I had automatic compression stockings on.

    Bring a small pillow with you to the hospital.  You should hug this if you need to cough or sneeze, and I hugged it when getting up and when walking.  Tell friends/relatives not to make you laugh.

    Don't be surprised if you gain fluid.   When I got home, I had gained 20 pounds in fluid, but it was gone in less than a week.

    The nurses first helped me get out of bed and into a chair.  I would stand up and do deep knee bends at the chair, so if I felt weak I would just simply sit back down.  I think this helped strengthen my legs in preparation for walking.  Do as much walking as you can in the hospital.  I looked like I was drunk at my first walk, holding onto the IV pole.

    When you get home, it might be painful to lie down flat, so if you have a recliner use that.  My recliner was uncomfortable and I ended up propping three pillows on the couch and sleeping sitting up.   You probably will not be able to bend over for a couple of weeks.  I think I spent about 2 1/2 weeks sleeping on the couch.

    Pain medication can cause you to be constipated.  I didn't want to deal with pain with that, so I started taking a little bit of Metamucil several times a day and it was a really good choice for me.

    I didn't have staples or stitches closing the operative ports.  They used glue.

    Get a large size of sweat pants to wear.   I am a 10-12 and I was wearing a size 20 (I got them at the second-hand store; still had the tags on them and I got them for 25 cents).  

    Your tumor is A LOT smaller than mine, so your operation and recovery may be different.  I just wanted to give you some suggestions to consider.

    Please keep us posted and ask any questions....   I was very scared, too!

  • donna_lee
    donna_lee Member Posts: 1,042 Member
    JoanneNH said:

    I had a laparoscopic full

    I had a laparoscopic full nephrectomy in September.  I'll give you some suggestions.   If the anesthesiologist offers an epidural, do it.   I went into the radiology suite, got onto a special bed, face down, and that is the last thing I remember until I woke up in the recovery room.   The epidural numbed the surgical site until they took it out.  I also had a button I could press if I needed pain med, but it turns out I really didn't need it with the epidural in.  After the epidural was taken out, I did have strong pain but I took oral pain meds at the max dose at the soonest allowed interval.  I told the nurses/doctors I wanted to keep on top of the pain and not let it get too far along before getting meds.  They totally agreed.  I was able to wean off of it within a week of being home.   I didn't get morphine or any of the oxys.  They decided to give me dilaudid.

    You will probably have a Foley catheter, but they put it in while I was out, assume it was in the OR, but I don't know for sure.  I thought it would be uncomfortable, but it wasn't.

    I had the head of the hospital bed raised up so I was semi-sitting up.  When I was in bed, I had automatic compression stockings on.

    Bring a small pillow with you to the hospital.  You should hug this if you need to cough or sneeze, and I hugged it when getting up and when walking.  Tell friends/relatives not to make you laugh.

    Don't be surprised if you gain fluid.   When I got home, I had gained 20 pounds in fluid, but it was gone in less than a week.

    The nurses first helped me get out of bed and into a chair.  I would stand up and do deep knee bends at the chair, so if I felt weak I would just simply sit back down.  I think this helped strengthen my legs in preparation for walking.  Do as much walking as you can in the hospital.  I looked like I was drunk at my first walk, holding onto the IV pole.

    When you get home, it might be painful to lie down flat, so if you have a recliner use that.  My recliner was uncomfortable and I ended up propping three pillows on the couch and sleeping sitting up.   You probably will not be able to bend over for a couple of weeks.  I think I spent about 2 1/2 weeks sleeping on the couch.

    Pain medication can cause you to be constipated.  I didn't want to deal with pain with that, so I started taking a little bit of Metamucil several times a day and it was a really good choice for me.

    I didn't have staples or stitches closing the operative ports.  They used glue.

    Get a large size of sweat pants to wear.   I am a 10-12 and I was wearing a size 20 (I got them at the second-hand store; still had the tags on them and I got them for 25 cents).  

    Your tumor is A LOT smaller than mine, so your operation and recovery may be different.  I just wanted to give you some suggestions to consider.

    Please keep us posted and ask any questions....   I was very scared, too!

    Fear slows healing

    I don't ever remember being afraid of the surgery or of pain that it might cause.  But I was not looking forward to the death sentence the physicians had given me....which was 5-7 months away unless surgery could be done.  And neither the PC and Oncologist were of the opinion that surgery could even be attempted. 

    Fast forward nearly 8 years, 3 cancer surgeries, 1 ankle reconstruction (now that hurt when it broke and dislocated), and other assorted temporary set-backs, I'm still here to cheer you on.  I won't bore everyone with the details, but you can click on my user name to find out what and how my surgeries were done.

    The worst part is behind you.  The cancer started, it was found and scared you sh**less.  The Dr.s determined a course of action and you have a date set.  You are probably antsy waiting for the day.

    Go to work, buy groceries, make sure you have clean sheets on the bed the morning you go to the hospital.  If you have room for a shower stool in the tub/shower, get one.  Ask for help!!! Light meals to be brought in.  Have someone who will pick up groceries for you, bring your mail or paper in, run to the pharmacy if you need something.  Get someone to do the laundry or even carry the laundry baskets from Point A-B and back again. 

    In the 80's, I had 2 lap surgeries and went home with steri-stips holding the incisions together. A little bloating for a day, slept off the anesthesia, drank plenty of fluids, and got on with whatever had to be done.

    With cancer, there will be follow-up monitoring tests. You can let the anticipatory fear paralyze you, or not.  Recognize there will be some anxiety to hear the results, but the test is the easy part.

    Be just like the old book about the Little Toy Train..."I think I can, I think I can."  And you will.

    Good Luck

    Donna

  • Septemberzoe
    Septemberzoe Member Posts: 49
    Hi Stephanie

    Hi Stephanie!

    i had a robot assisted partial nephrectomy in September at age 43. My tumor was clear cell 3.5 cm. The surgery was not bad...I had trouble with nausea from the anaesthesia and was in the hospital for 2 nights. Was on pain meds for 4 or 5 days...make sure they prescribe a stool softener! Took 3 weeks off from work as a preschool teacher but might have been able to go back after 2 weeks. The worst part now is anxiety over scan results... I have my 6 month scans tomorrow and am scared. Had a bone scan, chest, abdominal and pelvic ct immediately after pathology results and they were good except for 2 micronodules in lung (Don't think they are related to rcc). 3 month chest pelvic and abdominal ct was good with one micronodule In lung remaining but unchanged. Tomorrow 6 month chest abdominal and pelvic ct with dr appt on Thursday for results...lots of anxiety but I've heard that gets better with time...hoping for good results and hope your surgery goes well with a speedy recovery :)

    When is your surgery? We will be thinking of you! :)

  • mdb2387
    mdb2387 Member Posts: 8
    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

    Iceman we have very similar

    Iceman we have very similar stories..When a solid mass was discovered on an ultrasound looking at something else I started down the path.First an MRI then CT..I looked on the internet and read that stage 1 kidney cancer had a 60% five year survival rate and that it was the most deadly deadly of the urinary tract cancers..My sister who is a nurse told me to stay the heck off the internet and I've never searched the subject again..All three scans put the tumor in the 3 cm range..When I finally sat down with the urologist three weeks after the first scan he said I was a good candidate for a partial and that the cure rate was 94%!!.He also said these tumors were slow growing .Needles to say I left feeling better..This was June 2012..The robotic surgery was done 8/23/2012.The tumor was 4.25 cm when it came out.I asked the surgeon if it had grown by a third in 2 months..He said probably not and that scans probably didn't provide an accurate measurent.When I had my first follow up scan and ran that by the radiology tech he bristled and said the scans are very accurate.So I worried about that.I get scanned every 6 months and also have a chest xray.So far so good but every 6 months I have a hard time when the time comes..I just found this site today..I wish I had earlier. Reading stories like yours helps..Thanks

  • mdb2387
    mdb2387 Member Posts: 8

    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.

    Stephanie..I had a partial

    Stephanie..I had a partial robotic August 2012.I started at 4:30 in the afternoon and was not bad at all.I was up walking at 11 PM and they actually wanted to discharge me at 8 AM the next day..I had a slight problem though in that they filled my bladder and said they would let me go as soon as I urinated..I don't know if it was because I had never been catheterized before or what but it took me until 4 that afternoon to go..I swear that the only real pain I had was from straining all that day..I was working at home two days later(very much against doctors orders) and went to a labor day party 8 days later.I only took one pain pill after being discharged.18 months later and you have to look really hard to see the tiny scars..You'll do well I'm sure

  • mdb2387
    mdb2387 Member Posts: 8

    Hi Stephanie

    Hi Stephanie!

    i had a robot assisted partial nephrectomy in September at age 43. My tumor was clear cell 3.5 cm. The surgery was not bad...I had trouble with nausea from the anaesthesia and was in the hospital for 2 nights. Was on pain meds for 4 or 5 days...make sure they prescribe a stool softener! Took 3 weeks off from work as a preschool teacher but might have been able to go back after 2 weeks. The worst part now is anxiety over scan results... I have my 6 month scans tomorrow and am scared. Had a bone scan, chest, abdominal and pelvic ct immediately after pathology results and they were good except for 2 micronodules in lung (Don't think they are related to rcc). 3 month chest pelvic and abdominal ct was good with one micronodule In lung remaining but unchanged. Tomorrow 6 month chest abdominal and pelvic ct with dr appt on Thursday for results...lots of anxiety but I've heard that gets better with time...hoping for good results and hope your surgery goes well with a speedy recovery :)

    When is your surgery? We will be thinking of you! :)

    Septmeber Zoe..I had my

    Septmeber Zoe..I had my partial 8/2012 and just went through the 3rd post scan.I understand and sympathize with the anxiety completely..I go pick up the results as soon as they come back..usually next day..When I see my doctor and so far have been able to tell him I already know the good result..He looks at me and says,what do you get so anxious about?..Stage 1 tumors under 7 cm in size have a 94% cure rate..It helps and I must say please take heart that my first post scan was the worst anxiety and it has lessened the last two times 

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Hi!
    Welcome! I know what you

    Hi!

    Welcome! I know what you are about to face is scary, but honestly, the worst part is the waiting (and for me, the pre-surgery weigh-in! lol).

    There was some pain, but not unbearable, and when you know what the pain is from, it isn't so bad. My pain meds didn't work at all until they changed them on the second night....and I was only kept on those for 12 hours. However, each person is different. Another member here, Jan, used dry ice on her incision. I think if you can find that, it might be a wise idea.

    My tumor (named him Arnold) was 13 cm and was attached to my liver and pancreas. It was tricky but they managed to do it via laprascopy. They even filmed it! (Maybe I should have charged THEM! lol) It was stage 3, grade 2. I had the surgery December 2, 2013 and returned to work January 13, 2014....and I was lucky to go back gradually - Human Resources insisted (I have a geat sick leave plan at work) and my doctor was happy that I did it that way. I am glad too, because although I felt well, I found I was utterly exhausted after being at work a half a day. Now I don't tire much at all! I feel really good - and a lot of people are saying that my color looks much better....they said I kind of looked green, but I am thinking that maybe it was just my new lipstick color!

    I hope these stories help you out. It's a great bunch of people here...I consider them the silver lining of having RCC.

    Hugs,

    Jojo

     

     

  • garym
    garym Member Posts: 1,647
    mdb2387 said:

    Iceman we have very similar

    Iceman we have very similar stories..When a solid mass was discovered on an ultrasound looking at something else I started down the path.First an MRI then CT..I looked on the internet and read that stage 1 kidney cancer had a 60% five year survival rate and that it was the most deadly deadly of the urinary tract cancers..My sister who is a nurse told me to stay the heck off the internet and I've never searched the subject again..All three scans put the tumor in the 3 cm range..When I finally sat down with the urologist three weeks after the first scan he said I was a good candidate for a partial and that the cure rate was 94%!!.He also said these tumors were slow growing .Needles to say I left feeling better..This was June 2012..The robotic surgery was done 8/23/2012.The tumor was 4.25 cm when it came out.I asked the surgeon if it had grown by a third in 2 months..He said probably not and that scans probably didn't provide an accurate measurent.When I had my first follow up scan and ran that by the radiology tech he bristled and said the scans are very accurate.So I worried about that.I get scanned every 6 months and also have a chest xray.So far so good but every 6 months I have a hard time when the time comes..I just found this site today..I wish I had earlier. Reading stories like yours helps..Thanks

    Internet is outdated...

    We are changing the odds every day! Its been over four years for me, small tumor full nephrectomy, ten years before me my father-in-law was diagnosed and there was nothing they could offer other than keeping him comfortable. Today there are many therapy options and many success stories, trials and drugs that are working and more in the pipeline. I predict that ten years after the cure is found the internet will catch up.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    mdb2387 said:

    Iceman we have very similar

    Iceman we have very similar stories..When a solid mass was discovered on an ultrasound looking at something else I started down the path.First an MRI then CT..I looked on the internet and read that stage 1 kidney cancer had a 60% five year survival rate and that it was the most deadly deadly of the urinary tract cancers..My sister who is a nurse told me to stay the heck off the internet and I've never searched the subject again..All three scans put the tumor in the 3 cm range..When I finally sat down with the urologist three weeks after the first scan he said I was a good candidate for a partial and that the cure rate was 94%!!.He also said these tumors were slow growing .Needles to say I left feeling better..This was June 2012..The robotic surgery was done 8/23/2012.The tumor was 4.25 cm when it came out.I asked the surgeon if it had grown by a third in 2 months..He said probably not and that scans probably didn't provide an accurate measurent.When I had my first follow up scan and ran that by the radiology tech he bristled and said the scans are very accurate.So I worried about that.I get scanned every 6 months and also have a chest xray.So far so good but every 6 months I have a hard time when the time comes..I just found this site today..I wish I had earlier. Reading stories like yours helps..Thanks

    Size of tumor

    Mdb,

    The CT tries to measyre a 3 dimensional object for which the radiologist may not always measure accurately and then it may grow a little. Who knows?

     

    Icemantoo

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Hello my dear~
    Glad you feel

    Hello my dear~

    Glad you feel able to ask for help here. Good place to ask as many questions a so many want to support you, including me! I take it you have never had any surgery? Sounds like you got a great doctor so trust him.

    I have had 2 robatic laproscopic surgeries and had little to no pain. For me, I was placed on a Dilauded IV and had extra morphine to push a button whenever I needed it. Funny thing is I dont' remember them telling me to push the button. See one of the drugs they give you is Versed which is a type of amnesia and it lasts the first day. So have someone with you or ask them to repeat information more than once.

    It would be good to have someone with you at home or if you could stay with someone. I had my cousin stay with me. Turns out I really didn't need her much at all. I had more trouble with side effects from pain meds but I have a drug interaction problem. Thats me.

    I also used a lumbar wrap after both my surgeries IN the hospital, on the way home and for days following. I would use ice or dry ice tucked inside this wrap and that really helped the sligh swelling around the largest incision.

    Good thing is you are keeping your kidney so you may only have a few of these little incisions which are about 1 inch wide at the most. That is where the instruments go and the surgeon is controlling them robatically. There are Youtube videos on this if you want to see it.

    I was able to get out of  bed with the use of a side rail to pull myself up. I had no problem sleeping but I did use a smaller pillow under the side where I had the incisions to support that area. I could get up and down pretty well.

    Now IN the hospital, know that they pump AIR into your abdomen so that the other organs are out of the way and the surgeon can SEE better. The problem is that this gas gets trapped inside, like even around the shoulder. THAT was the only pain I really had. It took a few days to go away completely. I don't remember farting too much, but warn folks LOL

    I ate fine, but just wanted to rest. General anesthesia takes awhile to get out of your system completely so you may be a big sluggish for a bit. I no longer work but felt I could return w/in 2 weeks easily.

    You may need to work less hours if too tired. Also I insisted on having my iron checked. No one told me it was low. I kept calling and finaly found out. I take over the counter SLOW FE and will have it rechecked soon. You need to insist on SLOW FE as it does not constipate you like the ones the doctors usually order.

    I have a feeling you will be fine. You're scared and that is to be expected. I have been through alot and a few surgeries to this one was not that bad at all for ME! LOL

    Write anytime and feel free to contact me if you want to privately. I will be here for you and walk this journey so you don't feel so alone.

    Hugs my dear~

    Jan

  • cjhawk38
    cjhawk38 Member Posts: 44
    You will be ok

    I had my robotic surgery last Monday, came home on Wednesday and went to a concert on Sunday.   Removing the jp drain tube was not fun but not as bad as I thought it would be.  No pain unless I had to move so it would have been great to keep the foley especially for night time.  I have had a bronchitis cough since October so another fear was how much coughing was going to hurt.  They give you a little pillow to hold against you and the first cough is more of a jaring hurt but the second cough doesn't hurt just more scared it will.  I have been sleeping on the couch  lenghwise  sitting up with one of those neck pillows and been sleeping pretty good.  For me it makes it easier getting up to go to the bathroom and tomorrow I think I will try the bed.  So far I have had no problem with gas pain!

     

     

    Any other questions let me know.

     

    Cindy

  • cran1
    cran1 Member Posts: 139
    Finally some1 with a smaller

    Finally some1 with a smaller tumor than mine! Mine was 1.6. As you can see Steph you and I are pretty lucky that it was found so early. The surgery is not to bad. When this is all over you will prob find the worst part of this whole ordeal is the Scanaxiety right before you have your imaging done. Hang in there. I am also in the AF, a crew chief on fighters and just landed in Elmemdorf.