Newly Diagnosed and Scared...

JeanMoore1971

Hello all, newly diagnosed with renal cancer and will be having a bone scan and chest ct to see if it has spread into my bones as my blood work was concerning to doctor in one area.  My kidney function is good and I will be having open partial nephrectomy surgery within next few weeks.  Anyone on here have open partial nephrectomy that can give me an honest no BS telling of what to look forward to recovery wise...

Spivey88

Welcome...

Welcome to the clue no one wants to ever join, but everyone is family and so sweet and caring.  Tell us a little background on how they found it and how large it is.  Did they mention why they have to do an open?  Location maybe?  I have a robotic and it was pretty easy as far as surgery.  All surgeries suck.  I know your down time and pain will be more than a robotic.  I know there are many people that have had an open on here that can help you.  I'm sorry you have had to join us.  You will find a wonderful support here.  As far as being scared, we were all scared shitless as some point!  Hang in there!!

stub1969

I understand completely

Hi, JeanMoore1971

First of all--welcome to this site.  You have come to a place where people with share their experiences, support you in your journey, and give you their take on what is going on.  I've been on here about two weeks and am so happy that I found this site.  I was recently told that I have a small/medium mass on my right kidney. Talk about shock!  I'm still trying to come to terms with this.  I will have a chest scan and blood work on Thursday and meet with a doctor on Friday.  I have not had surgery yet, so I can't give you any new information.  There are many on here that will offer you their no-nonsense take on this surgery.  I wish you the best of luck and keep us updated.

Stub

Jan4you

Well even though I am sorry

Well even though I am sorry for all the anxiety you are going through, you came to a great site for help and support!

Now they do not know yet if your tumor/neoplasm is RCC til the pathology reports comes back.

Your doctor is being cautious. Is he/she familiar with RCC? And is he trained in robatic, laproscopic surgery? You want a surgeon who is both familiar with RCC AND robatic surgery. We'll be here for you and walk along side you all the way if you want us to. (I will).

Try to focus only on TODAY and not project too far into the future. Its the UNKNOWN that drives one to be so anxious that you miss sleep, cannot relax and allow worry to rule your present day. Ask as many quesitons to us. I have had a couple of robatic surgeries and thought they were much better recovery than open incision.

Keep us informed. You'll get through this. Hopefully you have family too to supporty you.

Hugs, Jan

icemantoo

Welcome

Jean,

Back in my day 14 years ago, they were not doing partials. I do know that a partial is a tad bit more difficult than a full neph (more Cutting) and an open is a tad easier, but more invasive than laproscopic. Either way it is major abdominal surgery and there is no way to sugar coat a neph. Two inconsistencies in your facts. A parial suggests a smaller tumor while a bone scan suggests a larger one or that may be just your doctor's/hospital's protocal. As far as recovery I could tell you almost painless, but I would be laughed off this forum. The first week after surgery is tough,  but everyday gets a little better with maybe a bad day in between. At a then young 59 I was back to a slow normal in about 6 weeks.

 

 

Icemantoo

Bay Area Guy

Open Surgery

I can't comment on the recovery time for an open partial nephrectomy, as mine was a partial robotic laporoscopic.  I have, however, had two abdominal surgeries.  The first was when one part of my colon "flopped over" (that was the doctor's technical description of what happened) another part of my colon.  The second was more serious.  I had a sigmoid volvulous, which meant my colon had twisted 540 degrees, effectively shutting it off.  That resulted in a temporary ileostomy.  Here's my take on the recovery from those surgeries.

Any time a surgery has to cut through major muscle groups, which is the case both for your partial nephrectomy and for my abdominal surgeries, you're going to have  discomfort because those muscles have to knit back together.  My dad, who had countless surgeries, always told me that despite th fact that his heart operations (quintuple bypass and aortal replacement) were a lot more serious and involved, it was the abdominal operations that gave him the most recuperation trouble.  In terms of how long the discomfort lasts, everyone is different.  I'm fortunate (a strange word to use in conjunction with surgery, I know), that I've been blessed with pretty god healing genes.  I was walking for an hour or so a day within a week of being released from my abdominal surgery and had minimal pain, unless I coughed or sneezed.  You just have to take it a day at a time and try your best to do a little more each day.  It will take some time, but you'll notice that you'll get stronger and have less pain each day, although there will be a day or two when the lords of recovery toss in a little more discomfort than usual.  But those days are fewer and farthr between as time passes.

Footstomper

Welcome 1971

Nothing is as bad as you think it might be. I think most of react to the word 'Cancer' the same way a rabbit reacts to rapidly oncoming headlight. Know that nothing is as bad as we can imagine it.

You dont tell us much about your diagnosis (theres a place to do that at the top of the page). Perhaps you dont know, but the fact that they're talking about doing a partial, rather than removing the whole kidney, would indicate that your tumour is probably small: thats a good thing.

It is major surgery, but performed by experienced professionals; so no worries there. Your job is to sleep while they get on with it.

It hurts a bit when you come round (I had a full nephrectomy) but there are effective painkillers to help you.

Long term: It can be managed. Cancer is NOT the death sentence it once was, and I truly believe it will be cured or contained soon.

Good luck and try not to worry

 

APny

I had an open partial at

I had an open partial at Sloan Kettering 2 years ago. It was not anywhere near as bad as I had feared. My surgeon explained why the open is a better approach and totally convinced me. I had the option to go with someone else there with robotic but I stayed with the open and I'm glad I did. I only have one four inch scar instead of five or six for the robotic, which increases chance for infection. I had surgery in the morning on Monday, up and walking that evening, and home on Wednesday. On Thursday I was sitting at my computer doing work at home. While not a walk in the park, and yes, you'll have some pain and discomfort, my fears were a lot worse than the reality. The day of the surgery you're out of it so you don't feel much pain, plus you get pain killers. The second day was a bit rough but the third was fine. Have them teach you to roll to get out of bed. That allowed me to climb the stairs and sleep in my own bed. All the best to you!!

jmh27

Terrified

Just told I have a 6.8cm "interpolar" tumor on my left kidney. No lymph node or adrenal problems visible on scan. Doc wants to do "radical" neph. Does this sound right? I read some scary stuff about their having to remove ribs. Does that happen often? I am 70 and have low GFR to begin with, so I'm really scared. Glad I found this site.

hardo718

Welcome jmh

First of all, you'll get a bunch more responses if you start your own thread on the forum.  Secondly, I would strongly suggest you take the time for a second opinion and make sure it's with someone that deals specifically with kidney cancers, such as a Urologic / Oncologist.  A lot of times they can do a partial nephrectomy instead of the radical, but that is based on many factors.  The doctor you're seeing may not be familiar with that, lacks experience with robotics, or your specific history may not allow, but it certainly is worth another opinion.  I suggest you also get copies of reports (labs, scans, etc) to take with you when you get another opinion so that doctor can look at the whole picture.

It's a very scary diagnosis and you've come to the right place for advice.  Try your best to stay away from internet searches because much of it is outdated information and will unnecessarily scare you even more.  There has been so much advancement in recent years, as will be confirmed by others here as well. 

Best of luck and keep us posted.  I'll keep you in my prayers,

Donna~

Footstomper

jmh27 said:

Terrified

Just told I have a 6.8cm "interpolar" tumor on my left kidney. No lymph node or adrenal problems visible on scan. Doc wants to do "radical" neph. Does this sound right? I read some scary stuff about their having to remove ribs. Does that happen often? I am 70 and have low GFR to begin with, so I'm really scared. Glad I found this site.

Welcome jmh27

NO ONE IS GOING TO TAKE YOUR RIBS AWAY.

I had my whole kidney removed in 2013. I'm still here, no pain. None of us here are doctors, I think we have a couple of Nurses, all of us are patients. All of us remember being terrified at our initial diagnosis and then learned that we didnt need to be.

I'm not gonna lie to you, it is major surgery and will take a few weeks and physiotherapy to recover from. I suspect it must be a bit like a Caesarian. Dont worry about the operation, you will be in the hands of experts and all you have to do is have a nap and do what your told when you wake up. If you wish you can count your ribs at any point before or after surgery.

Surprise #2: Physiotherapists tend to be good looking and physiotherapy is fun.

The only advice I will give is this:STAY OFF THE INTERNET! MOST OF WHAT YOU WILL FIND IS EITHER INSANE, OUTDATED OR BOTH.

The only places I go on the web is here, or another site called Smart patients. They seem to be more medical while we're more empathetic.

We're always here if you want to talk, but you might want to start your own thread.

Teashea

Sounds like they found it early

Dec of 2005 I had a full nep of right kidney. It took about 3 months before I was able to get back to work. I was in remission for 9 years. Take good care of your health eating a healthy diet.