Going in for partial Neph next month - scared as heck

Don't worry, and relax.  That's easy for me to say.  I'm about 11 months ahead of you.  Went through the same thing last summer, and like you, I was crapping my pants with fear and worry.  Looking back, I feel silly.  I had an open surgery and a partial nephrectomy.  While it was not a walk in the park, I was in on Thursday morning for surgery, walking around the hospital wing Thursday evening, home on Saturday afternoon, and walking 6 miles per day on Monday (4 days after surgery). 

I did not know they did needle biopsies for tumors on the kidney.  Sounds like you did your homework.  I went to a very experienced surgeon who did not believe in the robot/laparoscopic method.  He preserved 95% of my affected kidney, and I love him for it.  There are definite advantages to the robotic/laparascopic method--less scarring, and quicker recovery. 

I don't know if I covered all of your questions.  But you will look back on this a year from now, and maybe even laugh about it.  I thank my lucky stars that they discovered by tumor and dealt with it early before it became a bigger problem.  You should be in good shape.

I had a slightly different situation; I was told that total removal was likely necessary, but if once he got in there it looked possible he'd try a partial.  He ended up taking the whole thing out and honestly, 10 weeks later I feel completely normal and am up to normal activities.  It's definitely scary but most days the cancer doesn't even cross my mind.  It sounds like you got caught nice and early so it should be good.

If you feel more comfortable with the partial guy, you can always go with him but let him know ahead of time that you want him to do what's safest.  Also, keep in mind that the research has pretty clearly shown that having one kidney has no significant impact on lifespan; my diet and activity; I work in public health research and did a lot of freak-out research before I went in for the nephrectomy, and everything I read made me feel better.

I clearly remember getting the diagnosis. I had a kidney stone and a CT scan showed a 5.0 cm mass on my kidney. When the kidney stone passed I felt fine.  I hoped it was a mistake and really didn't know what to do.  This forum helped a lot.  My doctors told me how lucky I was catching the tumor early and with a good chance it hadn't spread. I didn't feel lucky and like you I had never had major surgery and didn't know how I would manage.  A friend's brother died and when I found out it was kidney cancer and I asked him what happened.  He said his brother was getting off the couch one day and felt a sharp pain in his side.  Tests showed he had broken a rib and it was a result of kidney cancer metastisizing to bone and that was his first symptom.  This really brought the message home and I knew I had to deal with this.  I rationalized that I needed the surgery but the anxiety never left.  I went to my family doctor to get  his take, and when he measured my blood pressure it was 180/100.  I had always been a steady 125/80.  I started taking bp medication and continued until the day of surgery.  Post surgery, your nurses will make your recovery as comfortable and speedy as possible, I can't say enough about how good and attentive they are-if one pain med doesn't work they will find something that does.  Make sure you tell them about your reaction to dialudid.  The waiting is the worst, and once you get to the hospital you will just get caught up with the flow

There are plenty of stories on this board from people just like you-we all made it through and are recovering nicely.  Take good care and post any questions or concerns, someone will respond.

db8ne1 said:

Take a Deep Breath!

I watched my kidney mass grow over a year and a half before having it surgically removed.

I was in the midst of therapy (chemoradiation then surgery then 6 months more chemo) for Stage 3 Colorectal Cancer and the urologist told me to worry about that before we focused on the kidney. 

I ended up going to a specialist who uses robotic assisted Da Vanci apparatus.  Spent 1 day/night in the hospital and went home the next day.  Spent 1 month recovering at home and then back to work.  Early stage Renal Cell Carcinoma.  Surgery is said to be more than 95% effective for cure.  Low likelihood of it ever coming back.

So, try and relax and focus on yourself and your health.  It should all be OK.

Best wishes - and keep us posted!

J

OH my goodness, HH,I am so sorry for the exprience you've had so far! Glad you went to another potential surgeon. I agree, I didn't think they did biopsies any longer. And for that first doctor not to get the tumor.. well gulp!

For me the CT showed irregular shaped borders that was indicative of cancer. The pathology report after they examine your tumor following surgery has the final say.

I realize the C word is scary, so I am glad you found us here. Coming here and looking at my surgery online helped me alot. I was not scared at all. I was only concerned about whether I would have  to heal from an open incision (one larger one) or laproscopic ones which are several shorter onces, about an inch in diameter. They are used to insert the robotic surgical arms with instruments/cameras.

We'll walk this journey along side you if you want us to. I learned early on that if you had to get Cancer, Kidney cancer is usually the easier as its often "contained" within the kidney and there is no need for chemo, radiation afterwards. Yes you are monitored for some years to come.

You want a surgeon you feel secure with and who offers you the Robatic, laproscopic surgery if possible. Your tumor is about the same as mine. I am 1.5 years out with no evidence of any reoccuring cancer and no problems at all with my recovery.

Now I had to have radical nephrectomy due to the position of the tumor within the kidney. I had robatic surgery and did quite well after. I am also sensitive to narcotics/opiates.

Still, I would get a copy of your records when your BP went low. The Anesthesiologist will want to know what happened to monitor you more closely.

You still cannot exercise for 1 month, except for walking. The hardest part of any abdominal surgery is they pump your abdomen up with this gas in order for the surgeon to SEE inside. But that gas gets trapped in and around your shoulder for sure and THAT hurts or is sore. Some of it you'll pass as you move around.  Pain pills don't really reach that shoulder pain, but stretching and walking did for me. I also wore a lumbar wrap to hold in the sore muscles/incisions following surgery.  It wraps around held by velcro. It also has ouside straps to hold it firmer if necessary. I wore it home from the hospital. You can get them at any drug store. They are meant for bad backs for support. I even wore it to bed.

To help with soreness/pain,  I would place a block of dry ice inside the wrap but over the larger incision where they removed my kidney and it really helped the swelling and inflammation. I hardly needed any pain pills after that. in fact I did not have any horrible pain at all. I was sore and used pain pills for about 5 days, but tried not to use them if I could.

However, I had to beg someone to bring me ice to place over my incisions while IN the hospital. Finally the PT gal brought some ice cubes inside a face mask. The RNs were like, you got all these pain pills to take.. aaah nope, the ice worked directly over the incision.

Yes, you need to rest, walk, rest, walk and not allow yourself to worry about things. Pain pills can contstipate you so you'll need to get stool softener pills.

HH, I would suggest you learn how to relax your body. Start by your breathing. Breathe IN through your nose and out s l o w l y through your mouth, with your teeth apart. Now go someone pleasant in your mind while you do these nice, slow deep breathing. Try it now. As you keep breathing slowly, not clenching your teeth, but keeping the teeth slightly apart, you start to work consciously on other muscle groups, until your whole body relaxes.

I wouls suggest you ask your fiance if she'd give you gentle massages while you do this deep, slow breathing. then do the same for her.

Okay they will place a catheter in your bladder when you are asleep on the operating table. Sometimes they are removed as soon as you can make it to the bathroom, otherwise you'll keep it in till you leave. 

The night after your surgery, they will get you up, first just to sit at side of your bed. Then up to walk a few steps. With your BP problem, they will especially go slowly with you and make sure you are tolerating the pain meds before getting you up to walk.

While in bed, you'l be wearing these stockings on your legs to prevent blood clots following any surgery. They will automatically blow up and squeeze your legs gently, then deflate, on and off. After you are able to get up and walk on your own, they will probably remove them.

However, when they remove the Urinary catheter, make sure you are doing your breathing FIRST (tell them to wait) until you are breathing slowly, blowing out through your mouth, then let them remove it. Trust me this breathing technique works if you are having ANYthing intrusive, like shots, drawing blood, removing catheters. Its used for childbirth. I had a biopsy performed with NO anesthetic on my cervix, but felt NOTHING as I was doing my breathing!! Again, practice this, as it also helps reduce stress and anxiety.  

You wil be in the hosptial 1-3 days, usually not longer. Some folks prefer a recliner to rest/sleep in. As you feel better, do not push it. Some folks return to work in a few weeks, others are told to wait a whole month.

But do not push it when you start to feel better, because you  are healing INSIDE and you don't want hernias or other ruptures. Usually your stitches dissolve as they use surgical glue to hold shut the outside incisions with a little tape. Laproscopic incisions often fade to a fine line after awhile.

Too much? Hope not. Now live your life and try not to listen to horror stories. Again, most of us knew nothing of Kidney cancer until we got it. So educate yourself and ask us as many questions you need to hon.

Stay in touch,

Warmly, Jan

Allochka said:

Hi and welcome, sorry uou had

Hi and welcome, sorry uou had to join.

Previous posters had given you excellent info, nothing for me to add. I just want to say again that even if it is kidney cancer - the tumor of your size is very far from death sentence, will be cured by surgery and with extremely high probability will never come back. Please cheer up and thank your lucky stars for your reflux which helped to diagnose it early. In case of my fiance it was hepatitis C which required abdominal ultrasound to check liver condition. I've never been so grateful to chronic and potentially serious disease like Hep C before! :-)

And by the way - don't be afraid of surgery. Nowadays docs make wonders! I've just had C-section to deliver our little daughter. Of course I understand you can't compare nephrectomy to simple C-section, but it is kind of surgery anyway... I was not afraid of surgery itself, not for a second :-) Everything will go smoothly, it is 21st century after all. Your biopsy was unsuccesfull, ok,but I guess the surgeon to perform nephrectomy will be much, much more experienced.

HH431 said:

I really appreciate reading

I really appreciate reading everyone's responses and experiences.  It makes me feel a bit more at home in a sense and more comfortable.

 

Jan,

You are 100% correct about the deep breathing.  I've actually been practicing it when my anxiety issues started by in 2013 and use it through my guided mediation exercises as well as times when I feel my anxiety getting high.

 

I also told the surgeon and PA about my Dialuid experience and it's on my do-not-take med list.  I have always been sensitive to medications.  Back in 2002, I once got C-diff on Zithromax for a sinus infection - although took that antibiotic times before and times after that.  Go figure.  I've been eating natural greek yogurt with live cultures and just started a probiotic as I might have another sinus infection as I write this...so am wary of going on an antibiotic and yet another antibiotic with the surgery which is standard procedure, of course.

 

Jay,

The second surgeon (whom I prefer) said he would end up doing the full removal if it's necessary.  He just thought he could do the partial.  I would prefer a partial, but understand the risks of bleeding as well as the chance of it returning.  But, the Physician's Assistant told me the odds were only a few percent it could return (at least in my case).  However, I have seen studies that state 20-40% recurrence.  I am going to give the surgeon a call this week to ask a few other questions about this.  I guess I just worry about down the road if something happens to my other kidney and I am only 43 now...would like to keep the whole thing.  However, he is definitely not the cowboy type.

But, this is why I am kind of scared of all of this.  Some say do partial, some say do full...my general doctor said if it were him he would get another biopsy and if it came back benign, just monitor it which is what was originally going to happen.  However, he said knowing me, I wouldn't be as comfortable with that and that I would be better taking it out for ease of mind's sake. 

I had the same surgeon as Positive_Mental and had an open partial nephrectomy. Home in two days and my fears of the surgery were far greater than the pain I experienced afterwards. Partial nephrectomies when possible (due to location, etc.) are always preferable as they preserve kidney and hence kidney function. I've also heard of recurrances but then there are recurrences with ful nephrectomies also where it returns to the kidney bed. So there are no guarantees either way. One thing that is guaranteed is that should something happen to your other kidney, you still have one left to take up the slack. Which is why I would never opt for a full nephrectomy unless it was medically necessary and I had no choice. Find the best expert in partials and go with him or her.

Recovery is not awful at all. I was up and walking the same night as my surgery, and off pain killers by the second week. I dreaded it because like you, I never had surgery. In addition to all the excellent advice given above, I would recommend you get a long body pillow and a wedge pillow. These allowed me to sleep in my own bed comfortably. The wedge reaises you and the body pillow kind of provides support on the surgical side. Also get a garbage bag for the way home and sit on that in the car. That way you can just swivel on the bag instead of with your body. And don't forget a small pillow to put under the seat belt so it doesn't rub against your incision.

Drink tons of water and walk as much as you can every day. And yes, do those breathing exercises. Don't let the fear take over. I promise you the reality is not nearly as bad as my imagination made it. Best of luck to you and keep posting here. It really helps.

HH431 said:

I really appreciate reading

I really appreciate reading everyone's responses and experiences.  It makes me feel a bit more at home in a sense and more comfortable.

 

Jan,

You are 100% correct about the deep breathing.  I've actually been practicing it when my anxiety issues started by in 2013 and use it through my guided mediation exercises as well as times when I feel my anxiety getting high.

 

I also told the surgeon and PA about my Dialuid experience and it's on my do-not-take med list.  I have always been sensitive to medications.  Back in 2002, I once got C-diff on Zithromax for a sinus infection - although took that antibiotic times before and times after that.  Go figure.  I've been eating natural greek yogurt with live cultures and just started a probiotic as I might have another sinus infection as I write this...so am wary of going on an antibiotic and yet another antibiotic with the surgery which is standard procedure, of course.

 

Jay,

The second surgeon (whom I prefer) said he would end up doing the full removal if it's necessary.  He just thought he could do the partial.  I would prefer a partial, but understand the risks of bleeding as well as the chance of it returning.  But, the Physician's Assistant told me the odds were only a few percent it could return (at least in my case).  However, I have seen studies that state 20-40% recurrence.  I am going to give the surgeon a call this week to ask a few other questions about this.  I guess I just worry about down the road if something happens to my other kidney and I am only 43 now...would like to keep the whole thing.  However, he is definitely not the cowboy type.

But, this is why I am kind of scared of all of this.  Some say do partial, some say do full...my general doctor said if it were him he would get another biopsy and if it came back benign, just monitor it which is what was originally going to happen.  However, he said knowing me, I wouldn't be as comfortable with that and that I would be better taking it out for ease of mind's sake. 

HH,

My doctor also told me the odds of recurrence are around 2%.  He said that even when the plan was to do a partial, so I believe that there is enough data to support those odds.  At my first follow-up in March, he told me that there is no "zero" when it comes to odds of recurrence, and there's also no treatment that seems to prevent it beyond early detection and removal.  That's why there's no chemo or radiation after the nephrectomy.  So it's kind of a fine line we, as kidney cancer survivors, walk.  The cancer is removed and then... what?  We just hope and pray.  

When my surgery was scheduled and I knew it was getting taken out, instead of being afraid I was more resolute than anything else.  Don't get me wrong, I was afraid the day of the surgery, but I was also happy to know that the disease was being taken out.  It's the AFTER part that I had the most trouble with, especially until the first follow-up, because it's over after that.  You just remember that you are Stage 1, your tumor was T1, and your odds are excellent.  

- Jay 

Preserving kidney function is good if you can do it and get all the tumor. Particularly at your age. You won't know the type or stage until they get it out. They can't tell from imaging. They can't really tell from biopsies either, because tumors are often not uniform across the tumor. Hopefully you will be Stage 1. There's a small chance you could be Stage 3 if it grew into any of the veins.

The odds of it that large being a benign mass is I think only 5-10%. I can't remember exactly.

This website has great information on kidney masses, types, stats, treatments, etc. This doctor was my surgeon.

http://www.kidneycancerinstitute.com/

Chances of recurrence are tied tightly to type (there are different types of kidney cancer), stage, size, and fuhrman grade. You're not going to know that until you have the pathology report.

I have trouble with pain meds, so I can relate. All the opiods make me very nauseous. For some reason the anti-nausea medication doesn't help me. And the doctors rarely listen to me when I tell them about this, so they usually give me an opiod anyway and an anti-nausea drug, then I get sick and throw up. It's annoying.

I also have problems with anxiety. I've tried several drugs in past years. Recently because of anxiety and depression I tried Lexapro (again). It's working, but I've gained 15 pounds in 6 weeks. It makes me want to eat all the time. I'm about to quit it.

I do use ativan, but I don't take it regularly. If you can only take it when you need it, I think it would keep you from building up resistance and dependence.

Best of luck to you. Sorry you have to be here. I hope things go well with your surgery and you get the best possible outcome.

Todd