Waiting for Surgery (!)

Hi there. I just joined. I'm 44 years old and  found out a few weeks ago that I have a solid 5 cm mass on my right kidney that appears to be localized, no metastases. Surgery is scheduled for Jan. 30, in 13 days. The plan is robotic surgery, the doc says he wants to try for a partial nephrectomy, but because it's located in the center of the kidney he might have to take the whole thing. From what I've read, it sounds like taking out the whole thing might have less complications than a full nephrectomy? I understand the operating time is much longer for the partial, too. He said that if I ask him to take the whole kidney and skip the extended surgery, he'd do that.

What do y'all think? 

Of course, he also warned me that he might have to switch from the robotic keyhole surgery to an open surgery and there's no way to tell beforehand. Yeesh. So basically, I'm going to go under with no idea what's going to be done to me and no certainty about what's even in my kidney? I've read everything I can find online about the surgery and kidney masses and kidney cancer, and researched MRI images and obsessed over my MRI images. Since they can't tell me anything more than that it's a solid mass until after pathology, Dr. Google and I have diagnosed it as clear cell carcinoma, haha.

The doc says he can't tell for sure if it's infiltrated the center of the kidney until he opens me up. The edges of the tumor are fuzzy in some places, and it's right up against the stuff in the center of the kidney, so it could be either T1b or T3a. 

Seriously struggling with all these unknowns and anxiety.

I'm using the surgeon who took out my husband's prostate cancer last year because we know and trust him. I've had two previous abdominal surgeries for unrelated things, and my experience of surgery is that it hurt a LOT worse than the surgeons say and for a lot longer. The doc also says that because of those previous surgeries, it's more likely there will be issues with this one because of scarring. 

I just want this to be over with!

 

 

Comments

  • eug91
    eug91 Member Posts: 471 Member
    welcome

    I'm so sorry you had to join us, but this is a great forum here. If you have any questions or just want to complaint/vent, we're here for you. We've all been through what you're going through, so we know you're going to do great. 

    If I understand you correctly, your doctor wants to try for a partial nephrectomy - where they try to remove just the tumor and leave part of the kidney intact. As opposed to a radical nephrectomy - where they remove the entire kidney. Yes, a partial is a tiny bit more complicated, but if he can do it, it'd be a good thing in the long run. You'd preserve added kidney functionality - or for in the off-chance that later in life you develop some other issue with your other kidney. Short answer: you can live a long healthy life with one kidney, but if your doctor wants to try for a partial and see if he can save it, I would at least try it. 

    As for robotic vs open, try not to worry about that. Trust your doctor. Whatever ends up happening, the end result is that the cancer's gonna be out of your body, which is the important part. 

    As for Dr. Google, please be careful with that. Google only makes anxiety worse. If you're finding yourself upset, stop googling and post your questions here instead. 

    I know the surgery can seem overwhelming and scary, but we know you're gonna do great.

    Two bits of advice before my nephrectomy that really helped me. 1, do as much walking as possible. You'll want to do walking after the nephrectomy to help the healing process, but walking before the surgery was really good for me, and I really do think it helped me be in a great place physically and mentally before the nephrectomy. And 2, get a spirometer (under $10 at Amazon) and practice breathing with it to help build up your lung strength. Same thing, I think it really helped me with recovery. 

    Lastly, if reading other people's neph experiences will be helpful, click through to my user profile - there's a link to my nephrectomy story. 

    Anyways, you're gonna do great and you'll be on the road to healing in no time. You've got this! 

  • Bay Area Guy
    Bay Area Guy Member Posts: 619 Member
    Abdominal Surgery vs Robotic for Kidney

    Like you, I had a couple of abdominal surgeries before I had the robotic for RCC.  My abdominal surgeries were for twisted intestines.  In one case, my sigmoid colon twisted 540 degrees and shut everything down.  In that one, they had to take 18 inches of colon out and let the rest of my colon rest to get rid of inflammation, so I had an ileostomy bag for 2-1/2 months.  That is NOT fun.

    The recovery from the abdominals was very painful because when you have an open abdominal surgery, they have to cut through pretty large muscles and when those muscles start to knit back together, it can be bad.

    The robotic kidney surgery makes four or five very small incisions.  In my case, I had very minimal pain, but after the abdominal surgeries, ANYTHING would feel minimal.  I didn't need pain meds of any kind, but your mileage may vary.  As to an open surgery, I'll have to leave that to others.

    Hope you have a very boring surgery and a swift recovery.

  • APny
    APny Member Posts: 1,995 Member
    edited January 2020 #4
    So sorry you have to be here.

    So sorry you have to be here. It's routine procedure to warn you that a partial may turn into a full nephrectomy and robotic/lap may have to turn into open. I had an open partial and my anxiety and fear of pain and recovery were way worse than the reality. I had surgery Monday morning, up walking that night, home on Wednesday afternoon, and doing work at my computer (at home, of course) on Thursday morning. So try not to worry about it being an open vs. lap/robotic. From everything I've read on this forum, my recovery was no worse than others' who had it done robotically. As for partial, yes it's more complicated and depending on the location of the tumor, may not even be possible. But if it can be done, yes, do that because it's best to preserve as much kidney function as possible. Both lap/robotic and partial surgeries require a great deal of skill and experience so I would try to find the best person possible. I know you have faith in your husband's surgeon but I do think you should find a surgeon highly experienced in nephrectomy (especially partial and robotic.) All the very best to you! And yes, walk and use the spriomenter religiously prior to your surgery.

  • stub1969
    stub1969 Member Posts: 973 Member
    Some parts are similar to me

    Male, mid-40's, right kidney, 5 cm are all similarities.  I did have a robotic partial though.  My tumor was in the lower pole, which made it a lot easier for the doctor.  A couple items that I want to touch on from your post.  As eug91 says, "be careful with google".  Not only did I feel really anxious and down right scared reading about RCC on google, I found out later that much of the information was terribly outdated.  The information about survival rates, treatments, and sugery successes didn't paint a rosey picture.  The reality is treatment options and survival rates are getting better and better.  The other thing that is getting better is the tools at the fingertips of surgeons.  One of our members (icemantoo) didn't have the option of a partial when he had surgery almost 2 decades ago.

    The other thing that I want you to consider is your surgeon.  Believe me, I totally get that you "trust" the surgeon that you are going to use.  However, I think it would be prudent of you to ask him/her how many surgeries he does in an year for RCC.  If they are not performing a lot (some say 100 per year as a figure to go by) then I would strongly recommend looking for a new surgeon.  This is a sneaky, unrelentless disease and you want to do all you can to make sure that surgery is the cure for you.  The skill of your surgeon is something that YOU control.

    Beyond these few words of advice, I want you to know that you can lean on us and ask questions.  We'll do all we can to provide you with encouragement and information from our own experiences.  Keep us posted on how you are doing.  After all, January 30 will be here before you know it.

    Blessings--Stub

  • Deanie0916
    Deanie0916 Member Posts: 620 Member
    Sending good vibes

    And prayers to you. As Tom Petty sings, the waiting is the hardest part. I had my left kidney removed a little over 3 years ago. It was an open surgery. Like others have said, try to stay away from Dr. Google. Hope your recovery goes well, try to get up and walk as soon as you are able. God bless.