Intro, my story (12 days post nephrectomy), and THANKS to those who have posted here!

HarleyMom117
HarleyMom117 Member Posts: 27 Member
in Kidney Cancer #1

Hi, everyone!   This is my first time posting (though I spent some time reading before my surgery).    THANK YOU to those of you who have posted your stories.   They were incredibly helpful in letting me know what to expect, and what questions to ask.   This experience would have been far worse if you guys hadn't prepared me -- and, for that, my family & I are VERY THANKFUL!!  :)

My name is Terri.  I'm 46, and my kidney cancer was discovered accidentally by an abdominal/pelvis CT scan that was done for something completely unrelated.   I found out about my mass on Sept. 19 -- and had an open radical nephrectomy on Oct. 2.    Cancer was confirmed by pathology -- renal cell carcinoma -- at stage 1B.   According to my urologist, the complete nephrectomy ended up being the correct decision, because the tumor was a little larger and had spread a little more than the CT scan showed.   If I had had a partial, chances are good some of the cancer would have been missed.

12 days post-op, and I'm feeling really good.   Still some minor incision pain (completely controlled by pain meds) -- particularly where my new incision crosses my c-section scar.   WOW -- does THAT hurt (when I'm getting up or sitting down).   My energy level is CRAP, but I know it will continue to improve.   I'm relatively mobile (even went for a short walk outside yesterday), but my appetite sucks.   When I do eat, it's generally not more than a few spoonfuls.     :)

I have a surgery follow-up appt. on Nov. 6, then appointments with my urologist and an oncologist in January.   I have no idea what to expect with the oncology appt. -- if anyone can fill me in, I would be VERY grateful!!!

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    Welcome to the club

    Terri,

    Sounds like you are having a normal uneventful recovery.

    My guess is that youre follow up appointment in November will be to check your incision and see if any post op problems occured. In january you will no doubt have a CT, chest xray and bloodwork.

     

    Each doctor and hospital is a little different and is in part dependant on the size of your tumor and pathology report which you did not disclose in detail.

     

    At 46 you should have it a little easier than most of us.

     

     

    Icemantoo

  • HarleyMom117
    HarleyMom117 Member Posts: 27 Member
    #3
    icemantoo said:

    Welcome to the club

    Terri,

    Sounds like you are having a normal uneventful recovery.

    My guess is that youre follow up appointment in November will be to check your incision and see if any post op problems occured. In january you will no doubt have a CT, chest xray and bloodwork.

     

    Each doctor and hospital is a little different and is in part dependant on the size of your tumor and pathology report which you did not disclose in detail.

     

    At 46 you should have it a little easier than most of us.

     

     

    Icemantoo

    THANKS, Iceman!

    Thanks for the info.!   It's nice to know what to expect at my upcoming appointments.   Okay -- stupid question -- what other information should I be requesting from my pathology report? 

  • Djinnie
    Djinnie Member Posts: 945 Member
    #4
    Post Op!

    Hi Terri, I am glad to hear you are doing so well! I did the same as you, I came on here and read the posts, but did not post myself until a couple of weeks post op. I had a partial, my diagnosis was stage 1B grade 3. It does take your digestive system a while to settle, with everything being shifted around and the swelling it is not surprising! The worst thing for me though was the exhaustion! You should be over the worst of it soon though! Keep us posted!

     

    Djinnie

  • HarleyMom117
    HarleyMom117 Member Posts: 27 Member
    #5
    Djinnie said:

    Post Op!

    Hi Terri, I am glad to hear you are doing so well! I did the same as you, I came on here and read the posts, but did not post myself until a couple of weeks post op. I had a partial, my diagnosis was stage 1B grade 3. It does take your digestive system a while to settle, with everything being shifted around and the swelling it is not surprising! The worst thing for me though was the exhaustion! You should be over the worst of it soon though! Keep us posted!

     

    Djinnie

    Hi, Djinnie --

    THANKS for your message!   Yes -- have to agree with the exhaustion.   The darn thing is I feel 95% when I'm just sitting and relaxing (no pain to speak of) -- so I get antsy & start doing things.   But when I start moving around, I get tired very quickly.   I look forward to my stamina improving (though I've heard it can take months to get back to normal).  

    How long ago did you have your surgery?  

  • AprilandChuck
    AprilandChuck Member Posts: 110
    #6
    HarleyMom117 said:

    Hi, Djinnie --

    THANKS for your message!   Yes -- have to agree with the exhaustion.   The darn thing is I feel 95% when I'm just sitting and relaxing (no pain to speak of) -- so I get antsy & start doing things.   But when I start moving around, I get tired very quickly.   I look forward to my stamina improving (though I've heard it can take months to get back to normal).  

    How long ago did you have your surgery?  

    so glad you are following up

    So glad you are following up right away with an Oncologist! They will go over your scans and note any areas that bare watching..depending on thectesting you then should be given a course of either observation or treatment options..most people are terrified of the Oncologist because cancer is scarey..however during this fight they arecyou best coach..if you are uncomfortable with your Oncologist..look into another and get a second opinion..if nothing else the 2nd opinion will be clarifying....our Medical Oncologist was referred by our Urological Oncologist..so we felt he was our second opinion lol..we were lucky enough to be very comfortable with Chucks whole orig team..do not be afraid to call Cancer.gov for info..they areca wonderful resource!  You got this! Sending lots of prayers your way! April

  • Djinnie
    Djinnie Member Posts: 945 Member
    #7
    HarleyMom117 said:

    Hi, Djinnie --

    THANKS for your message!   Yes -- have to agree with the exhaustion.   The darn thing is I feel 95% when I'm just sitting and relaxing (no pain to speak of) -- so I get antsy & start doing things.   But when I start moving around, I get tired very quickly.   I look forward to my stamina improving (though I've heard it can take months to get back to normal).  

    How long ago did you have your surgery?  

    Recovery can be slow, but age and fitness are a large factor. I had my surgery at the end of March, it was a laparoscopic robotic assisted op. I was extremely tired for about the first four weeks, then I was able to push myself more and more. I still don't have quite the same stamina as I used to, but I think that is because of being laid up for so long. I'm getting there though!

    Djinnie

  • izzycohen
    izzycohen Member Posts: 80
    #8
    HarleyMom117 said:

    Hi, Djinnie --

    THANKS for your message!   Yes -- have to agree with the exhaustion.   The darn thing is I feel 95% when I'm just sitting and relaxing (no pain to speak of) -- so I get antsy & start doing things.   But when I start moving around, I get tired very quickly.   I look forward to my stamina improving (though I've heard it can take months to get back to normal).  

    How long ago did you have your surgery?  

    Nothing abnormal about the fatigue.

    It sounds like you're doing very well considering the surgery.  I too was amazed at how easily and quickly I got tired during that first few weeks.  My surgeon told me it would be 4-6 weeks before I felt "normal".  he was spot on.  I travel for my business.  Made the first out of town trip at the 7 week mark.  I went to bed promptly at 9:00 PM every night that week and slept through until 7:00 the next morning.  The following week I was considerably stronger.  By the third week on the road I felt like my old self.

    Stay positive.  You're doing well.

     

    Izzy

     

  • HarleyMom117
    HarleyMom117 Member Posts: 27 Member
    #9
    izzycohen said:

    Nothing abnormal about the fatigue.

    It sounds like you're doing very well considering the surgery.  I too was amazed at how easily and quickly I got tired during that first few weeks.  My surgeon told me it would be 4-6 weeks before I felt "normal".  he was spot on.  I travel for my business.  Made the first out of town trip at the 7 week mark.  I went to bed promptly at 9:00 PM every night that week and slept through until 7:00 the next morning.  The following week I was considerably stronger.  By the third week on the road I felt like my old self.

    Stay positive.  You're doing well.

     

    Izzy

     

    Good to know!

    THANKS for the info. on the fatigue, Izzy!   Definitely good to know what to expect. 

  • twinthings
    twinthings Member Posts: 409
    #10
    Hi Terri

    Glad to meet you, sorry for the circumstances! 

    I had a radical nephrectomy on May 29th and was released from the hospital on the 31st.  I was home less than 2 hours before I had to practically run down the cellar steps as tornadoes fell out of the Oklahoma sky all around us.  At any rate, my discharge was followed by an uneventfull recovery.  In fact, my doctor said I was getting along better than his average patient.  I never had fatigue, still don't.  Guess I'm one of the lucky ones.  Dr attributed my quick recovery to my youth, lol.  If he thinks 49 is youthful, he must specialize in geriatrics!! 

    I think it's great that you are seeing an oncologist already (or soon will be).  My urologist won't refer me to an oncologist until he releases me from his care at my 1 yr post-op appt.  I'd say of all things, that is what causes me the most stress!  I can't help but wonder if an oncologist might follow a different course of follow-up care rather than just blood work and chest x-rays every six months.

    I'll be anxious to hear all about your oncology appointment, I hope you'll share.

    In the mean time, hang in there and keep thinking positive thoughts.  Youth is on your side!! Wink

     

    Sindy

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