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26 years old facing nephrectomy

Prime777time's picture
Prime777time
Posts: 5
Joined: Apr 2018

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.

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

 

 

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's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

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.

Gtngbtr58 @aol.com's picture
Gtngbtr58 @aol.com
Posts: 204
Joined: Oct 2017

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.

 

 

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

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. 

Devastated Wife's picture
Devastated Wife
Posts: 52
Joined: Apr 2018

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's picture
Tapman63
Posts: 137
Joined: Dec 2017

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

Tapman63's picture
Tapman63
Posts: 137
Joined: Dec 2017

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's picture
Bryn1108
Posts: 83
Joined: Jul 2017

Biggest hugs and prayers. 

Prime777time's picture
Prime777time
Posts: 5
Joined: Apr 2018

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's picture
APny
Posts: 1949
Joined: Mar 2014

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's picture
Ashley10101
Posts: 1
Joined: Jan 2018

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's picture
icemantoo
Posts: 3227
Joined: Jan 2010

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

Steph85's picture
Steph85
Posts: 158
Joined: Feb 2018

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

AnnissaP's picture
AnnissaP
Posts: 631
Joined: Sep 2017

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!!

Inaya's picture
Inaya
Posts: 1
Joined: May 2018

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's picture
Angiebby75
Posts: 192
Joined: Aug 2017

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's picture
Prime777time
Posts: 5
Joined: Apr 2018

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's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

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

Texegon
Posts: 2
Joined: Jun 2018

I'm 30, just had a partial on my right kidney on 5/30, tumor had similar dimensions to yours but a different subtype (clear cell), also pT1a. 5 days out I'm feeling pretty dang good. Glad to know each day is better for you. I'm having a similar recovery experience - I feel great considering I had part of an organ removed! My heart is with all those who have had/are having  difficult recoveries. I feel very fortunate I just get to feel annoyed to be slowed down by an experience like this at our age. With a bit of luck and some vigilance, maybe it'll just be a distant spot in the rearview mirror not too long from now. Best wishes for a continued uneventful recovery!

stub1969's picture
stub1969
Posts: 800
Joined: Jul 2016

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's picture
APny
Posts: 1949
Joined: Mar 2014

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

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