26 years old facing nephrectomy

Hello, I am new to both major surgeries and blogs. On April 19 I was told I have a 3.7cm tumor on my right kidney. The initial urologist recommended a robotic partial nephrectomy. I am set for surgery on May 7. I went in for a second opinion as I am still in disbelief. The second urologist/oncologist stated the tumor has a tongue and appears to be very close to the sinus of my kidney. The second urologist does not think performing the procedure robotically is wise, due to leaving cancerous cells behind. Instead, he recommended a total nephrectomy (if the tumor has reached the sinus). I feel like the total nephrectomy is the best option. I am concerned with the recovery and the non-robotic nephrectomy. I never thought I would be faced with a situation like this at my age.

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Comments

  • icemantoo
    icemantoo Member Posts: 3,359 Member
    Two pieces of good news.

     

     

    I bet you didn't   expect to hear that. The 2 pieces of good news are 1 that your suspected tumor is relatively small which makes your long term prognosis excellent. The 2nd is that because you are so young your recovery should be much easier than most of ours were.

    Your other question about which surgical recommendation to follow is above my paygrade and something you may want to discus with your internest.

    Heres to an uneventful and sucessful surgery and recovery.

     

    And to close we all felt bewildered and confused in the begining.

     

    icemantoo

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member
    I'm not a medical person, but I agree with the total nephrectomy

    I'm not a medical person, but I agree with the total nephrectomy over the partial.

    My husband had the total nephrectomy (his tumor ended up being 5 cm) and I was very pleased with his recovery.

    He actually wanted to play golf at 4 weeks out from surgery.

    The first 2 weeks after surgery will be the worst but then it gets better from there.

  • Glidergal365
    Glidergal365 Member Posts: 93
    I had a whole nephrectomy 4 weeks ago

    I'm 40 and this was my first surgery. I feel really really good! My surgery was part laprascopic and a hand assist. So there was a 5-6 inch incision on my lower abdomen. I've been able to work about 4 hours a day this week. I just get tired around 2-3pm. 

    My kidney was already weird (atrophic) likely from birth. Since my surgery (left the adrenal because my cancer was in the lower lobe) my blood pressure went from years of being 130/78 to consistently 110/73. You can read through the boards, people have great tips on preparing for whichever surgery you get. There's also a Facebook page for young adults with kidney cancer. I was really scared but I feel really good now. 

  • Gtngbtr58 @aol.com
    Gtngbtr58 @aol.com Member Posts: 206
    Our situations are similar

    Except I'm 59 and my mass was a little smaller than yours.  I also had a radical nephrechtomy because of the renal sinus involvment.   B"H my surgeon did a laparoscopic nephrechtomy and my recovery was just fine.  I was home 2 days after the surgery only needing tylenol for the pain.  Back at work part time after three weeks. Just take it slow- accept any help offered-you will feel little better each day.  One thing I wish was explained to me before the surgery is that a nephrechtomy is a big procedure and the anethesia really puts all the organs to sleep as well and it takes time for your body recover.  I can happily say that after 4 months I'm feeling great-thank g-d.

     

     

  • Devastated Wife
    Devastated Wife Member Posts: 52 Member

    I had a whole nephrectomy 4 weeks ago

    I'm 40 and this was my first surgery. I feel really really good! My surgery was part laprascopic and a hand assist. So there was a 5-6 inch incision on my lower abdomen. I've been able to work about 4 hours a day this week. I just get tired around 2-3pm. 

    My kidney was already weird (atrophic) likely from birth. Since my surgery (left the adrenal because my cancer was in the lower lobe) my blood pressure went from years of being 130/78 to consistently 110/73. You can read through the boards, people have great tips on preparing for whichever surgery you get. There's also a Facebook page for young adults with kidney cancer. I was really scared but I feel really good now. 

    Getting the bad kidney out has been good.

    My husband's blood pressure has gotten really better after he had his kidney removed, too!  He has even gone on less BP medication.

  • Tapman63
    Tapman63 Member Posts: 137

    Getting the bad kidney out has been good.

    My husband's blood pressure has gotten really better after he had his kidney removed, too!  He has even gone on less BP medication.

    Wow...

    That's interesting - the same thing happened to me.  I've actually been off blood pressure meds since the surgery.  

  • Tapman63
    Tapman63 Member Posts: 137
    Don't Worry

    I had a radical neph two days after my 55th birthday and I'm still around.  I know how scary the surgery looming is...I just had mine in February...but you're young and will get through everything ine.  Right now the important thing is to get that sucker out before it spreads.

    Best wishes - keep us updated.

     

    Jim

  • Bryn1108
    Bryn1108 Member Posts: 97 Member
    Biggest hugs and prayers

    Biggest hugs and prayers. 

  • Prime777time
    Prime777time Member Posts: 5
    Great community

    Thank you to all that responded with kind words and encouragement. I love reading everyone’s journey and stories. It does help knowing I’m not alone. I will keep you all posted on my journey as well. It seems like the recovery from an open procedure is a bit longer with that common tired feeling at about 2pm. I am just ready to get it out and move on with my life. At first I was stressing out about work but I realize I need to take a timeout and let the doctor do his job. I just wish I knew what caused this mass. The fear of the unknown is real. Thank you again for all the support!

     

    Michael

  • APny
    APny Member Posts: 1,995 Member
    edited April 2018 #11
    I'm so sorry you have to be

    I'm so sorry you have to be here but you'll get lots of support. If in fact it's touching the sinus the complete neph might be the best way to go. However, since it's so small and you're so young I would seek a third opinion on whether it could be done partially. I had an open partial and I'm a lot older than you but my recovery didn't seem any worse or longer than those who had it done robotically. I had surgery Monday morning, up walking that evening, home on Wednesday and sitting at my computer doing work (from home) on Thursday. Mine was about the same size as yours. All the best to you!

  • Ashley10101
    Ashley10101 Member Posts: 1
    I had a partial

    I had a laparoscopic partial just under 2 weeks ago. My tumor was small (1.5 cm) and on the upper front of my left kidney (50% exophytic so there was no major tissues involved that weren't already redundant) I was told it would be 3-4 small incisions (so I expected three 1cm incisions and a single 3-4 cm incision. I'm 27, female, and otherwise healthy.

    I woke up to 5 abdominal incisions (plus the drain). ASK FOR DRUGS BEFORE THEY REMOVE THE DRAIN - ALSO GET A SENIOR NURSE TO DO IT!!! My nurse was a student and pulled it out so slow. It wasn't painful, but an incredibly disturbing feeling - I puked mid extraction - and it doesn't need to be that way.

    Incisions: 1 is 2cm, 3 are 3cm, and one is 6cm. The doctor that removed my staples (not the surgeon) said "wow that's a lot of holes!"

    In the end, I was in A LOT of pain - it is not an exaggeration to say I felt like I got stabbed 6 times. I still have trouble standing or sitting up more than 30 minutes at a time; which is uncommon for renal robtotic-laps.  The smallest incision opened up an hour after the staples were removed and now I have to clean and dress the open wound every morning, and ensure it doesn't eviscerate.

    I was told my surgery was "routine" and "textbook" but I was unprepared for this. I honestly think it would be better had they of taken the whole kidney, at least then I wouldn't feel like I got drop kicked in the back. Also, I feel like 1 big cut is better than 5 small/mid cuts disbursed over nearly a square foot of abdomin. Just my opinion.

    I'm allergic to most pain meds, so maybe that why it's been tougher for me. I also vomited for 14 hours after sugery (mostly dry retching as my muscles couldn't really contract enough to get anything out). I got out of hospital the next day - but that was mostly me bargaining with the nurses/doctors (if I ate solid food, they would let me walk. If I walked 3 times over 4 hours I could get my catheter out. If I peed, I could get my drain out and if my port fluid came back good, my CK levels acceptable, and I could root, then I could go home. I was never more determined to make urine and pass gas in my life!

    Long story short, from what I went through, full kidney out seems fine to me, and a open surgery may not actually be that much worse than robot assisted lap depending on your body's morphology vs. the surgeon's experience.

     

    Still waiting on the pathology report. I find out on the 7th. All I know is from the needle core biopsy a few months ago - fuhrman grade 3-4 clear cell RCC.

  • icemantoo
    icemantoo Member Posts: 3,359 Member

    I had a partial

    I had a laparoscopic partial just under 2 weeks ago. My tumor was small (1.5 cm) and on the upper front of my left kidney (50% exophytic so there was no major tissues involved that weren't already redundant) I was told it would be 3-4 small incisions (so I expected three 1cm incisions and a single 3-4 cm incision. I'm 27, female, and otherwise healthy.

    I woke up to 5 abdominal incisions (plus the drain). ASK FOR DRUGS BEFORE THEY REMOVE THE DRAIN - ALSO GET A SENIOR NURSE TO DO IT!!! My nurse was a student and pulled it out so slow. It wasn't painful, but an incredibly disturbing feeling - I puked mid extraction - and it doesn't need to be that way.

    Incisions: 1 is 2cm, 3 are 3cm, and one is 6cm. The doctor that removed my staples (not the surgeon) said "wow that's a lot of holes!"

    In the end, I was in A LOT of pain - it is not an exaggeration to say I felt like I got stabbed 6 times. I still have trouble standing or sitting up more than 30 minutes at a time; which is uncommon for renal robtotic-laps.  The smallest incision opened up an hour after the staples were removed and now I have to clean and dress the open wound every morning, and ensure it doesn't eviscerate.

    I was told my surgery was "routine" and "textbook" but I was unprepared for this. I honestly think it would be better had they of taken the whole kidney, at least then I wouldn't feel like I got drop kicked in the back. Also, I feel like 1 big cut is better than 5 small/mid cuts disbursed over nearly a square foot of abdomin. Just my opinion.

    I'm allergic to most pain meds, so maybe that why it's been tougher for me. I also vomited for 14 hours after sugery (mostly dry retching as my muscles couldn't really contract enough to get anything out). I got out of hospital the next day - but that was mostly me bargaining with the nurses/doctors (if I ate solid food, they would let me walk. If I walked 3 times over 4 hours I could get my catheter out. If I peed, I could get my drain out and if my port fluid came back good, my CK levels acceptable, and I could root, then I could go home. I was never more determined to make urine and pass gas in my life!

    Long story short, from what I went through, full kidney out seems fine to me, and a open surgery may not actually be that much worse than robot assisted lap depending on your body's morphology vs. the surgeon's experience.

     

    Still waiting on the pathology report. I find out on the 7th. All I know is from the needle core biopsy a few months ago - fuhrman grade 3-4 clear cell RCC.

    Welcome Ashley

    Sorry about the excessive Quilt work.Sometimes Doctors and nurses practice medicine until they get it right.  Sorry to see you and others here so young. On the upside I expect to see some 60 year survivors from you guys. Actually I may not be around for that as I will be 75 years young this summer.

     

     

     

    icemantoo

  • AnnissaP
    AnnissaP Member Posts: 632
    Hi and welcome. Sorry you

    Hi and welcome. Sorry you have joined us, but you are amongst friends now. I would def go with the 2nd opinion. I went with mine amd it was the best decision. You will find rest once you have everything in place and get more answers. Keep in contact and keep reachin out with any concerns you may have!!

  • Steph85
    Steph85 Member Posts: 166

    I had a partial

    I had a laparoscopic partial just under 2 weeks ago. My tumor was small (1.5 cm) and on the upper front of my left kidney (50% exophytic so there was no major tissues involved that weren't already redundant) I was told it would be 3-4 small incisions (so I expected three 1cm incisions and a single 3-4 cm incision. I'm 27, female, and otherwise healthy.

    I woke up to 5 abdominal incisions (plus the drain). ASK FOR DRUGS BEFORE THEY REMOVE THE DRAIN - ALSO GET A SENIOR NURSE TO DO IT!!! My nurse was a student and pulled it out so slow. It wasn't painful, but an incredibly disturbing feeling - I puked mid extraction - and it doesn't need to be that way.

    Incisions: 1 is 2cm, 3 are 3cm, and one is 6cm. The doctor that removed my staples (not the surgeon) said "wow that's a lot of holes!"

    In the end, I was in A LOT of pain - it is not an exaggeration to say I felt like I got stabbed 6 times. I still have trouble standing or sitting up more than 30 minutes at a time; which is uncommon for renal robtotic-laps.  The smallest incision opened up an hour after the staples were removed and now I have to clean and dress the open wound every morning, and ensure it doesn't eviscerate.

    I was told my surgery was "routine" and "textbook" but I was unprepared for this. I honestly think it would be better had they of taken the whole kidney, at least then I wouldn't feel like I got drop kicked in the back. Also, I feel like 1 big cut is better than 5 small/mid cuts disbursed over nearly a square foot of abdomin. Just my opinion.

    I'm allergic to most pain meds, so maybe that why it's been tougher for me. I also vomited for 14 hours after sugery (mostly dry retching as my muscles couldn't really contract enough to get anything out). I got out of hospital the next day - but that was mostly me bargaining with the nurses/doctors (if I ate solid food, they would let me walk. If I walked 3 times over 4 hours I could get my catheter out. If I peed, I could get my drain out and if my port fluid came back good, my CK levels acceptable, and I could root, then I could go home. I was never more determined to make urine and pass gas in my life!

    Long story short, from what I went through, full kidney out seems fine to me, and a open surgery may not actually be that much worse than robot assisted lap depending on your body's morphology vs. the surgeon's experience.

     

    Still waiting on the pathology report. I find out on the 7th. All I know is from the needle core biopsy a few months ago - fuhrman grade 3-4 clear cell RCC.

    I to was dry heaving first 2

    I to was dry heaving first 2 days after surgery. I had a open partial nephrectomy and the spinal block was not working and i was sick i think from the diladid. I was put on fentynl and had tachycardia and hallucinated lol. Anyway, I'm 3 months post op and glad this is all behind me! Hope the rest of your recovery goes well! Oh, I'm 32 year old and I thought I was young! Thats crazy! Anyway, take care! 

    Steph

  • Inaya
    Inaya Member Posts: 1
    Hi try to find a third

    Hi try to find a third urologist opnion in order for u to decide which surgery is better for your case. My tumor was at midpole of my right kidney near renal artery and vein so my urologist decided on open partial nephrectomy which could be upgraded to complete nephrectomy if he couldn't remove all the tumor and he decided to freeze my kidney during surgery to minimize bleeding and work on the tumour slowly to protect renal artry and vein. 

    Regarding recovery don't make it a problem I had my open partial nephrectomy on 10th of May  that is since 12 days only the first weak was tvery difficult but since yasterday I started to feel better and my pain is controlled only by acetaminophen and after 2 days my stables will be removed and I will arrange with my urologist about routine follow up .

    My pathology report came with renal cell carcinoma ,clear cell type grade 2 of 4 

  • Angiebby75
    Angiebby75 Member Posts: 208
    Always follow your first

    Always follow your first instinc. I didn’t and I regret it. Get a third opinion if need be until you feel comfortable. This a great community with people with wealth of Knowledge.

  • Prime777time
    Prime777time Member Posts: 5
    Update.

    Surgery has come and gone. I decided to have my surgery at MD Anderson in Houston. I had an open right partial nephrectomy on May 15. The surgery went well and the doctor was able to get clean margins only taking 15% of my kidney. I was out of the hospital after 3 nights. Recovery is going well and seems like each day is better. The actual incision does not hurt but the bloating and digestive (gas) pains are horrible. My lower abdomen and stomach are still bloated and swollen. 

     

    I did receive my pathology report. The report was a two part diagnosis and seems to be a rare type. The renal mass indicated Renal Cell Carcinoma (4.0 x 3.8 x 2.7cm) Chromophobe Type (pT1a). The second part of the diagnosis or ”Final Margin Renal Mass” states Renal Parenchymal, no tumor present. Obviously I am not completely sure what this means because my follow up with my doctor is not until June 27. At this point I am glad that surgery is over and hoping for an uneventful recovery. 

     

    Thanks for all the support! 

  • JerzyGrrl
    JerzyGrrl Member Posts: 760

    Update.

    Surgery has come and gone. I decided to have my surgery at MD Anderson in Houston. I had an open right partial nephrectomy on May 15. The surgery went well and the doctor was able to get clean margins only taking 15% of my kidney. I was out of the hospital after 3 nights. Recovery is going well and seems like each day is better. The actual incision does not hurt but the bloating and digestive (gas) pains are horrible. My lower abdomen and stomach are still bloated and swollen. 

     

    I did receive my pathology report. The report was a two part diagnosis and seems to be a rare type. The renal mass indicated Renal Cell Carcinoma (4.0 x 3.8 x 2.7cm) Chromophobe Type (pT1a). The second part of the diagnosis or ”Final Margin Renal Mass” states Renal Parenchymal, no tumor present. Obviously I am not completely sure what this means because my follow up with my doctor is not until June 27. At this point I am glad that surgery is over and hoping for an uneventful recovery. 

     

    Thanks for all the support! 

    Glad to hear

    Glad to hear things are going well and you got to keep a big part of that kidney.  way cool! As for the gas pains, yup, they are EVIL. I lost all respect for carbon dioxide gas when I first had abdominal surgery. Walk, nap, repeat. As you're no doubt finding, it gets a little better every day. 

    My tumor was also a chromie and about the size of yours. It's generally the slacker of RCCs, growing slowly. I'm nearly 18 months post-partial-nephrectomy and it hasn't bothered to reappear (yet or ever).

    All the best in finding ways to keep from going crazy, waiting for your follow-up - !

    Jerzy

  • stub1969
    stub1969 Member Posts: 954 Member
    newbies

    Welcome to all our newbies.  (Prime--you're an old veteran now:)) . As you know, this whole diagnosis, to surgery, to recovery is a process.  Sometimes it moves quickly, sometimes..not so much.  Once you have the surgery the test of endurance really starts (IMO).  Upcoming scan anxiety is a test of one's inner strength.  The first few (sometimes this anxiety lingers to more than just the first few) more are the worst.  But, trust your doctors and know that if something pops up; it will be caught early.  A big recommendation from the members on this site would be diligent and dedicated to keeping up with your scans.  They literally can save your life.

    Prime---Welcome to the Chromophobe RCC family.  There is a thread on here about members that have ChRCC.  Surprisingly, we have more that you'd think.  

    Wishing you only the best to all of you as you move through your recovery.

    Stub

  • APny
    APny Member Posts: 1,995 Member
    So glad it's behind you and

    So glad it's behind you and that they were able to save most of your kidney. Here's to an uneventful recovery!