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Going in for partial Neph next month - scared as heck

HH431
Posts: 41
Joined: May 2015

Hello all,

I just turned 43 yrs old, male, been healthy my entire life, very fit, workout regularly, eat well, never smoked, etc.

I was having some on/off acid reflux issues as I started getting anxiety issues about two yrs ago shortly before my father passed away as my life was stressful.  I was also having insomnia issues as a result.

On any rate, I had an upper endoscopy done which basically came back normal; my GI Dr. also ordered an abdominal ultrasound....

And to my shock it showed a 4.2 CM solid mass on my kidney.  I had no signs of issues, all blood work normal, no blood in urine, etc.

I then had a CT scan with and without contrast which confirmed the same.

The mass is on the lower part of the kidney, has not spread, and not near any nodes, etc.  I am told I am fortunate and it would be curable with surgery, although monitored for 3-5 yrs.  I was told it's likely stage 1B I think?  I just wonder what the odds of it coming back are.  My sister thinks I should have the whole thing removed, but she is far from a medical expert. lol

Initially, I had a needle biopsy done with ultrasound, but the Radiologist missed the mass and merely extracted normal benign kidney tissue.  I later found out he hadn't much experience with kidney biopsies which makes you wonder why in the hell he is doing them (and maybe that is why I am still sore - that was over a month ago).  Anyway...these are said to be 80-90% cancerous.

I had the option of going to someone else for a second biopsy as I was told they are 98% accurate and very safe as far as not spreading the cancer, etc. but it seems to depend on what you read.

I got two more opinions from some respected urological surgeons.

The first surgeon recommended a full kidney removal as he felt the mass while as the bottom of the kidney was too close to the area where urine flows out of.  He felt it was way too risky to do a partial.

The second surgeon (who I was more impressed with) and had even better credentials has specialized in partial Robotic kidney removals and is confident he can do the partial.  He said there is always that risk once he goes in it could require a full removal and would do such if there was a risk with a partial.  This kidney also has two arteries which means one more to clamp down, but he seemed fine with that.  I know partials are more risky though in general.

Surgery is scheduled for June 16th and I am scared to death.  I've never had surgery before and I am told the risks and complications are very low especially given my condition, but it's not helping me right now.  I guess I just don't cope with this stuff well and do suffer from a little health OCD if you will.  I've never been scared in my life like this.

Since we don't know 100% it's cancerous, part of me wonders about getting another biopsy but then not sure I am comfortable with a mass that can grow or potentially become cancerous one day.  The most common benign are the Oncycytomas (sp?) but they can grow.  However, my fiance worked with a woman who was my age and they found a 7 CM mass on hers that was benign while monitoring it for years....and it never changed....end of story.

What if it's benign and then I end up need full removal?  Seems like a waste of a kidney.  I realize it is likely cancer, but just saying.

The mass is too large to burn/freeze.

I need a lot of support right now and reading the posts on this forum, it seems like I came to the right place.  My fiance has been wonderful, but some people have been negative about it with me including my older sister although I realize she doesn't mean to.  But some people just don't know how to react to someone with this especially when I hear comments like, "Well, I hope you come through with this," or "I am really scared for you,".  Know what I mean?  

I am just scared how I will respond to the anethesia, pain meds, and anything else.  After the needle biopsy they gave me Dialuid through my IV and I had a horrible experience with it like I was going to die.  My blood pressure dropped to 80 something over 30 something, nearly passed out, shakes, sweat....was horrible so I know I will never touch that again.  The Dr. said he likes to stay away from narcotics if possible and I agree.   

Anyway, all of this is just overwhelming me right now.  I am trying to keep my anxiety under some control as it has spiked, but working out helps me as does guided meditation (from Youtube videos).  I also take Valium (about 7.5 to 10 mg each evening.  I tried about 7 different anti-depressants and could not tolerate the side effects...so I am prescribed a benzo which I prefer not to be on, but I've been at the same dose for a year and no issues with it other than a little less sharp memory).

Thank you so much!

 

Positive_Mental_Attitude's picture
Positive_Mental...
Posts: 454
Joined: Jul 2014

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.

icemantoo's picture
icemantoo
Posts: 3217
Joined: Jan 2010

HH,

Hearing that C word is enough to scare the sh-- out of anyone. And then major surgery right out of the gate. The only difference for me was that there was no options for partials 13 years ago.

 

As for which is better it is like choosing which one of two ugly sisters to go out with. Neither one is much fun. Whatever decision you make will be the right one, realizing that the pitcher may make a game time decision to throw a curve ball during surgery.

From everything you said at 4.2 cm it has to come out.

 

No stories here are exactly alike, but your diagnosis so far bodes for full recovery from the surgery alone.

We are here to get you thru this not so fun part of your life and all of us have been there and done that.

 

Icemantoo

 

 

 

 

 

 

 

 

 

 

a_c
Posts: 4
Joined: Mar 2015

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.

db8ne1's picture
db8ne1
Posts: 141
Joined: Feb 2013

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

Jan4you's picture
Jan4you
Posts: 1320
Joined: Oct 2013

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

 

debynash
Posts: 5
Joined: May 2015

My open partial is in 10 days, so this is really useful information. Learning more on this site than from my surgeon, but as long as he has the hands of gawd, I will not complain later. The more we understand, the less we stress. And I promise I am starting my deep breathing exercises like, Now...!

Limno
Posts: 24
Joined: Feb 2015

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.

jason.2835
Posts: 337
Joined: Nov 2014

HH,

I was also blindsided by a tumor after some gallbladder issues in Sept of 2014... My full story is in my profile, but we have a lot in common.  My doc is also proficient in robotic surgery and wanted to do a partial, but I also had extra arteries and he felt that safety triumphed.  To be totally honest, I feel BETTER about getting the whole thing out.  Here are my reasons.

1) It keeps me honest.  Now that I have 1 kidney, I HAVE to eat better and take better care of myself.  That's not a bad thing at all.

2) I have seen too many stories of partials going wrong with bleeding afterwards; in fact I had to go back in the hospital back in March to get my gallbladder out and the kid next to me had had a partial to remove a benign cyst from his kidney.  He was back in because the kidney had started to bleed internally.  No thank you.  From a medical standpoint, sparing nephrons is ALWAYS a good thing, don't get me wrong.  But if the tumor is in an area that is particularly challenging, don't let a cowboy doctor "practice" on you.

3) Not to freak you out, because this is TOTALLY ANECDOTAL, but: I have also heard too many stories of cancer coming back after partials.  I can only assume that the chances of leaving some cancer behind are greater with a partial nephrectomy.  I mean, they're leaving the rest of the kidney in there.  From a mental standpoint, I feel a lot better knowing that the whole renal capsule was removed and the cancer along with it.  MOST kidney tumors arise from the inside and then grow outward, making it pretty easy to just scoop out all the diseased tissue.  But, still, I feel better that it's all out.    

One thing to remember about the surgery; your health is going to HELP you greatly.  Your recovery will be easier, especially with the robotic surgery.  I was back to work in 4 weeks.  The worst part was the fatigue, but the pain was very manageable.  Took tramadol for a few days after coming home then Tylenol only.  Laparoscopic procedures are always preferable and are pretty good from a recovery standpoint.  

Had an open procedure for the gallbladder because it was so bad, and the pain for that was a LOT worse... was popping percocet like candy for a solid week.  

You mentioned narcotics... afterwards they gave me morphine and I had a very similar reaction to yours.  I found the pill form more bearable, but I still hate narcotics.  I've never done drugs at all.    

So don't sweat the surgery too much.  In the end, they are taking the disease out of your body.  That is what you need to focus on.  Your tumor is generally on the small side.  Your prognosis will be excellent.  Even it turns out to be benign, it's a good idea to get cysts or tumors out because they can always mutate and become malignant later.  So GET IT OUT.  

Keep us posted.

- Jay 

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

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! :-)

Allochka's picture
Allochka
Posts: 869
Joined: Nov 2014

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
Posts: 41
Joined: May 2015

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. 

APny's picture
APny
Posts: 1946
Joined: Mar 2014

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.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

The waiting and the wondering is the worst part. It really is. The surgery really isn't that bad...they have come a long way in procedures. And then there is medication to make you feel comfortable. If you are otherwise fit, and healthy, choose your doctor wisely (and it sounds like you have been very pro-active in educating yourself on this) you will be fine!

I know it isn't easy to stop worrying - but try to stop.

Any other worries - just ask here. There is a wealth of knowledge and information and experience here on this forum!

Hugs

Jojo

jason.2835
Posts: 337
Joined: Nov 2014

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 

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

Which doc is pushing these biopsies? They generally don't biopsy kidney tumors. It's very hard to hit the tumor because kidneys are not dense structures, they are more like a filter, and the masses aren't uniform either. So a negative biopsy does not tell you much.

You should be seeing a urologic oncologist, i.e. a urologist/surgeon with training in kidney masses and their removal. A general urologist is probably not going to be great with this. It would be a good idea after your surgery (soon) when you have your pathology report if it turns out to be cancer, to see a medical oncologist. They are the ones that treat kidney cancer after it spreads. Often times the urologist or urologic oncologist will want to follow you. Personally, I felt more comfortable with a medical oncologist following me. They are more familiar with how and where it spreads. Also, medical oncologists are usually more familiar with any trials you may be eligible for (which will be based on your pathology report), if you have any interest at all in pursuing a treatment. Most trials have to be started within 3-4 months following the nephrectomy. You would want a medical oncologist with experience in RCC if you need it.

But all of this is getting the cart before the horse.

Kidney function gets worse with age. If you can preserve kidney function, you should. It may help you avoid dialysis when you get older. As far as I know, partials with clear margins don't change your chances of recurrence. Recurrence rarely occurs in the same kidney or even the opposite kidney (5% chance) unless you have a genetic form of kidney cancer.

Best wishes,

Todd

Limno
Posts: 24
Joined: Feb 2015

I found the moment I heard the word CANCER from a doctor, I was distracted and lost focus.  Much of the conversation that followed kind of washed over me.  I decided to bring my wife along for all of the subsequent visits.  She had a big stake in this too.  None of the doctors objected and I think we were able collectively get more information.  Afterwards, we were able to talk about the latest consult and I think we both felt better for it.

Second, there were so many pros and cons in the debate of partial vs radical nephrectomy, I couldn't really determine what was best.  I put the question to my family doctor and to my surgeon: If you were in my position what would you do?  Both said they would go for a partial.  Intuitively, it seemed the best solution although they said recovery would be longer and there would be more pain.  I think the pain and longer recovery made me consider a radical, but I wanted a long term solution based on current medical opinion for my situation.

Third, when I met with the Anethesiologist prior to surgery he suggested a spinal or epidural along with general anesthesia.  He said he would advise this for pain control.  Since this was one of my greatest fears post surgery, I agreed.  He ended up using a spinal because of arthritis in my lumbar spine.  Post surgery, I had no pain and didn't need anything for pain control.  The nurses were surprised, they kept asking me on as scale from one to ten what is your pain level.  My pain was 0 and sometimes 1 more from laying in bed for 10 hours than surgical pain.  I don't know if it was just my physiology but you may want to discuss these options if you do go for surgery.

foroughsh's picture
foroughsh
Posts: 775
Joined: Oct 2014
I'm so sorry you had to join this board. We've all felt scared when first heard about cancer,it's a scary word. But you've got all positive signs a patient wish to have. First it's small and seems contained. Second, you're young and healthy. Third, it was caught accidentally, and the last but not least it's kidney cancer, it's one of the best ones in "c" world. If it's stage one then you have more than 90% chance of being cured by nephrectomy.
I think it's good to find a surgeon whom you can trust and let him make the decision to do radical or partial nephrectomy, it's really complicated issue. Having the third or even fourth opinion is good if you're not sure about the best choice yet.  I read, the chance of  rcc coming back has no significant difference between patients who have had partial or radical nephrectomy .
My tumor was large so I had open radical nephrectomy. My surgery was done on Monday evening, they asked me to walk on Tuesday morning and I was home wendsday noon. So just two nights was enough in my case. Usually two to four nights is normal for open surgery. I didn't have remarkable pain in my abdomen but had worst pain around my right shoulder and ribs, they said it's caused by positioning during the surgery and is normal. It was my first surgery too, it wasn't a walk in the park as others have said but not that bad that you imagine. My hubby and I went on a short trip to Lebanon during fourth week post surgery and visited our friend who lives there and spent few days with him, he first didn't believe I had abdominal surgery just three weeks earlier because I had almost back to normal me at that time althouh  I got tired sooner and needed more relax time but it was manageable. My real problem wasn't physical, it was emotional, I wish I had talked to a therapist  right after I heard I had cancer but in that time I thought I could handle it on my own and I couldn't, just waste if time!!! I've been meeting a therapist since last month who have helped so much in dealing with my emotions. So consider this idea if you think you need one.
Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Fear is the worst part, I promise you. It takes all our rational concerns and blows them out of all proportion. The C word itself is scary, but I would go so far and say that the reality is not as scarey as our fears make it.

You have discovered a problem and now you're dealing with it. That is as it should be.

todd121's picture
todd121
Posts: 1425
Joined: Dec 2012

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

 

HH431
Posts: 41
Joined: May 2015

Thanks for everyone else's feedback...putting me more back at ease. :)

There is a counselor I've worked with on anxiety in the past who focused on cognitive behavior therapy who I plan on visiting again before this surgery.  

Todd, it sounds like we have some similiarities.  They told me the lymph nodes were not inflammed and there was nothing indicating spreading anywhere.  I've basically been told by both surgeons that removing it would take care of the issue.  They were saying it really wasn't close to anything in that sense (no renal veins involved).  The CT scan report did say the mass was growing into the renal sinus. I would be shocked if it's stage 3!  UGH.

I've tried Lexapro, Paxil, and Zoloft.  All caused me insomnia issues and a couple of other problems.

I tried Mirtazapine (Remeron) and just felt too weird and groggy on it.  I've used Trazodone for sleep in the past, but it actually worsened my anxiety which is very rare and odd.    

I try to vary the doseage on the Valium to sort of keep my body from getting too used to it, anywhere from 5mg to 10 mg at night.  I'm sure my body is dependent on it, but it still works for me and I have not felt the need to increase the doseage.  The only negative is I feel my memory is not as sharp on it, but small side effect compared to the other meds.  Once all of this winds down, I eventually want to ween off it completely but it will be a while no doubt.

As far as pain meds, earlier this year I tried Norco (by mouth) for an epicoectomy (where they had to cut into the gum to remove an abscess of a root canal tooth) and I felt a little nauseous, but sleepy which was fine.  Through IV I would think I would feel even less nauseated.

 

HH431
Posts: 41
Joined: May 2015

Todd,

It was my initial urologist who consulted others at the institute about the biopsy.  I did a lot of research on biopsies and they are more common now with pretty high accuracy (overall) and much better and safer.  Of course, assuming they hit it which the Radioligist did not.  Mine should have been hit at 4 CM as the first surgeon I went to used to them.

The last two (urologic) surgeons did not see a need or recommend biopsy in my case and are very specialized in kidney cancer surgery.  The person I am having do the partial has very high credentials and experience.  He's been involved in some leading edge stuff and specailizes in partials. He's also been on various programs including CNN.  He's ahead of the hospital's department (which is rated as top notch for kidneys) and I feel confident he will handle my situation accordingly.

 

 

Mav1969a's picture
Mav1969a
Posts: 22
Joined: Apr 2015

You"ll be fine brother!

If your doctor thinks he can handle it via partial, I'd go with his recomendation.  My doctor is only in his mid 50's, but my surgery went just as he expected because he had a long enough experience base.  My point is, your doc, based on the images they'very taken, has a very good idea of how it will go down.  And if there are any surprises (there won't be because the imaging is excellent these days...we're so lucky), the procedures have contingency plans. 

Your tumor is about the same size as mine was.  I had an open partial.  (I don't think my doc's clinic has invested into the robotics procedures yet.  But I read that, while relatively new, outcomes are similarly excellent.)  The good news with robotics is that recoverys are insanely fast.

You'll be turning cartwheels again before you know it.

 

Mav

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

I dont believe that cartwheels are compulsory

fightr's picture
fightr
Posts: 10
Joined: May 2015

HH431, sorry to hear you're going through all this. Your case is extremely similar to mine. I'm 43, healthy except for GERD, and the doctor's found the the 2.4 cm mass almost 6 weeks ago with a contrast ct scan. I had a partial nephrectomy on Thursday, and they used the robotic system. I went home on Friday, and am able to walk around almost normally...just a little slow. I'm barely using any pain meds, also, so my mind is very alert. Overall, I'm feeling very good that this thing is out of me. Of course I have some anxiety about what my life will be like going forward, but one thing at a time - heal first.

I also had anxiety prior to the operation. After what I just went through this week, I feel confident you'll surprise yourself with how fast you'll recover, not have pain, and be fine extremely quickly. Don't let this thing occupy your mind, and focus on appreciating the people and things you love. Please let us know how you are doing.

HH431
Posts: 41
Joined: May 2015

Mav and Fightr,

Great news and thanks for the confidence.  I am trying to stay brave and positive (difficult for me at times) and posts like this really make me smile and feel better about what is coming. :)  Thank you.

fightr's picture
fightr
Posts: 10
Joined: May 2015

HH431, you're going to do so well with the procedure. The best part for me has been the immediate feeling that the creature is out of my body. As of today, I'm off all the pain medicine. Overall, I'm just a bit tired, but everything else feels normal. Just think how lucky you are to be able to get rid of it easily and also all the support you have from your family and friends, including your new friends here.

HH431
Posts: 41
Joined: May 2015

Hi All,

I have a question.  My surgery is scheduled for June 16th, but for the last month I've had a lot of mostly clear sinus drainage.  The first two weeks was pretty bad with a lot of coughing - I have gotten better but still there.  A lot of it was going to my chest and still is, but I am able to cough it up.  I had a lung X-ray the other day as part of my preliminary surgery tests and it was normal.  I do have a sore throat.  I went to my regular Dr. on Monday and he doesn't want to put me on an antibiotic and thinks I can get by.  He said my sinus passages don't look too bad although my throat is red, everything else looks good.  I did get C-diff from antibiotics(first on Zithromax and then 7 mos later on clindamicin) back in 2002-2003 which is why I am always a little hesistant going on antibitics but had no issue since.  I now take a probiotic and eat a lot of natural Greek yogurt with live cultures which I didn't at that time.  I eat healthier in general compared to then.  I know for the surgery they will put me on an antibiotic too.     I informed the surgery nurse anesthesiologist the other day all of the cdiff history and my sinus condition.  She said just keep on an eye on it.  I've been on Zithromax since then multiple times with no issues.  Maybe it was a fluke thing. I will get a sinus infection every 1-2 years.  I've been using Flonase and the sinus rinse every day.

I really don't want this surgery re-scheduled: are there are issues with me having surgery and going under anthesia with whatever I have going on?  I'm sure they will examine me the day of surgery and listen to my lungs which sound fine today.  It's just this damn clear mucus going down my throat.  I do suffer from sinus issues from time to time.

 

Thanks.

Ree_Maryland's picture
Ree_Maryland
Posts: 157
Joined: May 2014

HI,

sounds more like allergies.you are right, you will be examined before surgey , calm down, soon it wil be over, I also was 1b t1, been over a year now and i feel great . sometimes I do have anxities but thank goodness the tumor it is gone .Sorry you had to join this sight but it is awesome place to be for comfort and good advice from so many people dealing with the same issues as we are. 

vdm13's picture
vdm13
Posts: 47
Joined: Jul 2012

Hi, HH.

You had lots of great feedback from the great folks on this board, so I will be brief and add my 2 cents. 

My diagnosis: Stage 4 / Grade 4 clear cell mRCC with Sarcomatoid Features diagnosed April 2012

My frontline treatment: Robotic/DaVinci Radical nephrectomy plus removal of a slice of my spleen and 16 lymph nodes. Sutent 50mg ever since. 

My current state: Almost NED at three years. A darn near medical miracle. Looking forward to FDA approval of some immunology treatments and being declared cancer free, officially, I hope within 12 months.

My opinion on your case: While I am not a doctor, I agree with those who suggest having it all removed. My dad did so some 30+ years ago and has been cancer free ever since. My uncle had a partial at the same time and fought with recurrence for 20 years or so and passed in his 60's. 

On recovery: I had a radical robotically and was home in 2 days. Wasn't an easy recovery, but it wasn't all that bad. My worst memory is removal of the urinary catheter and my bad experience with Morphine. Don't get me wrong: it was great for the ten minutes it worked. It was the next 20 minutes waiting for the next hit that was bad. I took one Oxy when I got home and haven't taken one since. Did not like that effect at all. I found a way to self medicate that I would prefer not to reveal in public, and it solved my pain and anxiety issues. 

Finally, take a breath and be thankful you have no mets. Your 99% curable!!! You'll be back on your feet by mid summer!

Vin

HH431
Posts: 41
Joined: May 2015

VDM13,

 

Great to hear how you are doing!  Truly wonderful news!

 

My surgeon is said to be one of the tops in the country and focuses on robotic partial nephs.  The tumor is also very encapsulated on the southern part of the kidney.  People from all over travel to him for these surgeries so I am remaining confident he can get it all.  I'm told the recurrence rate is only 3-5% or so if I recall.  The surgeon says he makes sure to cut 1cm of good tissue around the mass to ensure getting it all.  So, I am rolling the dice this way.  I've spoken to other doctors too and everyone says to get the partial if at all possible.  I also think robotic partials are more successful in preventing recurrence compared to partials that were done years ago.  I work with a woman whose father had one of he first Robotic partials about 15 yrs ago and he's been clean since.  Being only 43, I want to keep as much kidney function as possible as I have no idea what lies ahead of me later in life that could over-demand my remaining kidney.  I stay fit, eat healthy, exercise, never smoked etc. but who knows.  I've done all of that for a while and still got a tumor on my kidney.  Sometimes I think a lot of this just happens no matter how healthy you take care of yourself. (shrug).  And, there is always a very small chance a radical will be required he said if he sees something or something is too risky - he won't take chances.

 

I'm very wary of the narcotics especially my terrible experience with Diladid.  I took Norco for a tooth procedure earlier this year and felt slightly nauseated and sleepy, but wasn't too bad.  Maybe I can just stick with that.  I've got to be careful with Antibiotics too as I got c-diff years back.  I would like to avoid Clindamicin.  I've been eating plenty of probiotic yogurt though for a while now.  I've talked to the nurse in anethesia already about this and she recorded it - surely will talk to them about it before the surgery.

 

Tuesday morning is the surgery and it's getting close.  I'm scared, but thanks to everyone in this thread, my 'scare level' is not as bad.  I'm not "freaking" anymore.  But it's just still weird I am having to go through this as you can probably relate for the first time.  I just want it to go well and start recovering.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

You go in. You wake up and youre done, Everyone is there to do your worries for you. Enjoy yor nap

Nana4life's picture
Nana4life
Posts: 78
Joined: May 2015

 

And BAM ! it's over. The waiting for me was the hardest part. Im on the other side now and I can tell you it'll be okay. I am now taking it one day at a time. Yesterday was a good day for a visit from my grandson. Today I just want to relax and no visitors. I decide what I need. It is hard for me to set limits on people but on the other hand I have to take care of me. believe in yourself, listen to you. Oh as part of your recovery time, try to do fun things that don't require physical exertion. A friend of mine gave me some really cool coloring books and markers. Hours and hours of brainless fun. You may not like coloring books ( but you might be surprised these were super cool)maybe sketching or models like the ones or better yet maybe legos!!!! Hey that's a good idea I may just get me a set. No more reading and thinking too much. Heal up and then tackle this head on and don't ever give up. We will survive! Fear is our worst enemy, do not let it enter your mind. Do not feed it.... 

This site has been absolutely inspiring and full of hope! Please know that I will be sending my love prayers of energy to you. Please  be sure to touch base! 

Nana4life

Ps... As I wrote this before I stated to think about all kinds of other fun things to do. Puzzles, video games ( I prefer fun ones like angry birds or something, no violence), paint by numbers, sudoku, crossword puzzles ( sometimes too much brain required)

HH431
Posts: 41
Joined: May 2015

I am a huge home theater/movie fan, so I will be watching plenty of Blu-rays during my time off. :)

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foxhd
Posts: 3183
Joined: Oct 2011

Trust and don't second guess anyone while in the hospital. Everyone has been properly trained and they develope a knack at being real good at it. So sit back and watch the process like you are watching a movie. They will take care of you. You will not be their first patient. Do what they say and you will be running around in no time.

APny's picture
APny
Posts: 1946
Joined: Mar 2014

HH431. Go with the advice of your doctor. You're young and yes, you're right; you want to reserve kidney function. My surgeon/oncologist at Sloan Kettering is also highly thought of internationally and is considered an expert in this field. He saved 85 percent of my kidney and said recurrence is of course possible, but for stage 1 it's a low probability. He said it is also possible to recur for those whose entire kidney was removed. It can and does come back in the kidney bed even if the whole kidney is gone. There are no guarantees for anyone, partial or radical.

HH431
Posts: 41
Joined: May 2015

Foxhd and APny,

 

Well said and I agree!

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

Good luck tomorrow! Will be thinking about you.//// follow the advice you have received here and you will do great!

Hugs

Jojo

HH431
Posts: 41
Joined: May 2015

Thank you and to everyone else.

 

I'll be posting back as soon as I get a chance.

APny's picture
APny
Posts: 1946
Joined: Mar 2014

Wishing you the very best and yes, please check back as soon as you can!

HH431
Posts: 41
Joined: May 2015

Got home yesterday - surgery went very successfully. :)  I spent two nights.  


I am very sore and tired .The night after the surgery I got zero sleep because of these things that massage your lower legs to help prevent any blood clotting.  I couldn't sleep with them.  Not even a minute.  The next day I was on blood thinner so didn't need them.    But you want to know the worst pain right now besides the incisions and sore abs?  My uvula - that hangs in the back of my throat is really inflamed and hurting from the tube during surgery. It's about an inch long right now, very and touches the back of my throat - no exaggeration.  Initially I was gagging on it times and can feel it on the back of my tounge. I'm told it was return to normal.  It better happen fast or else I getting an ENT to remove it (which I read is a simple outpatient procedure).  I've been using Moltrin 600mg every 8 hours and gargling with warm salt water and Benedryl.  Trying to east smaller, softer meals too.  I've got Oxy here if the pain gets real bad, but haven't felt the need for it.  I am sitting up here at my computer desk in chair as I type and have about 3-4 pain out of 10, but I am fine with that.  If I lie flat it's about 1 out of 10.

My surgeon said he couldn't be more pleased with this surgery.  He's done more partial robotics nephs surgeries than anyone in the world.  But he had considered doing a radical though as it was more complex than the ctscan showed.  The tumor ran very deep, but he said he went even deeper to ensure all of it was gone.  Deeper than technically needed if I recall.  It was growing into the renal sinus, so some of that I guess was removed and some of it reconstructed basically.  He said the pathology of it will be back next week, but that it doesn't matter a lot because whatever it was is completely gone.  I think he studied it for an hour afterwards to make sure everything was good.  I also recall he studies it for an hour before even cutting into it.  Sorry, brain a little foggy still from everything. lol  Blood work and tests remained good the entire time and was off the catherder pretty fast.  My heart rate is a bit elevated, but common given what my body has gone through.

The kidney has about 80% of its initially funtionality and that within 6 months my blood work would not even indicate I ever lost any kidney he told me.

 

Nana4life's picture
Nana4life
Posts: 78
Joined: May 2015

Glad to hear all went well. Just as an FYI. Be very mindful how you move. I was healing wonderfully but strained a muscle so I had some pretty intense pain because it. Doctor says to be more mindful of how I get up and walk around. No bending over or krinching while walking and getting up and down. breathe into your pain and take your time, stand up tall. Easy to say I know but trust me. I learned the hard way not to rush things. Sorry about your throat. But all in all sounds like youre doing well.

So so happy youve gotten to the other side now. God speed on your recovery.

nana4life

fightr's picture
fightr
Posts: 10
Joined: May 2015

That's great news, you'll recover soon. I'm already 4 weeks post-surgery, and feel perfectly fine. I had to work on the mental healing more than the physical healing. I hope your recovery will be smooth and quick. 

JoanneNH
Posts: 115
Joined: Sep 2013

"He said the pathology of it will be back next week, but that it doesn't matter a lot because whatever it was is completely gone."

Yes, it does matter.  Even if it "is completely gone," if it turns out to be cancerous you will need to have periodic follow-up.

aamdsi
Posts: 284
Joined: Apr 2014

It's an old phrase, but time iwll heal everything. 

I HATED those leg things too!  But...guess better than getting clots.  They took them off after the first night.  Throat took abouta week to feel normal, so give that time.  Warm milk and honey?  FOund that warm drinks made it feel better (duh right?)

Every day you will feel better.  Walk as much as you can (that helps to control pain too), drink lots and rest.  If I remember seeing that you are a movie buff?  Now is the time to catch up on everything 8-)

Soon you will be back to running and all other wonderful summer games one can do in the warmer weather.

 

Gentle hugs 

icemantoo's picture
icemantoo
Posts: 3217
Joined: Jan 2010

HH,

 

Sounds as good as can be given the circumstances. May your surgery and recovery remain uneventful.

 

icemantoo

APny's picture
APny
Posts: 1946
Joined: Mar 2014

I’m so glad it’s over and that you’re recovering except for your sore throat. I didn’t have a tube down my throat. What was the purpose?

Make sure you do breathing exercises and walk a lot. I held a pillow against me while I walked and it also helped if I had to sneeze or cough. Wishing you the best and hope throat swelling goes down soon.

HH431
Posts: 41
Joined: May 2015

Yep good suggestions.

Are you sure you didn't have a tube put down your throat?  Pretty much standard for any surgery with anthesia I thought.  The reason is, just in case you were to vomit during surgery as that could be dangerous.

APny's picture
APny
Posts: 1946
Joined: Mar 2014

Actually, no I'm not positive. I had no sore throat at all and so I assumed I didn't have one. But I don't think it's standard for every surgery. I think they can also use a laryngeal airway mask. I'll have to ask next time I have my checkup.

Talmidah's picture
Talmidah
Posts: 25
Joined: May 2015

I am glad to hear the surgery went well, and hope you continue to have a good recovery.  My surgery is scheduled for June 25 and I have increasing confidence every day that it will go as expected.  Keep up the good work.

HH431
Posts: 41
Joined: May 2015

Thank you and it will go very well!  And your confidence will keep increasing through your surgery.  As scared I was when I started this thread, I would say the last week or so I was becoming less afraid.  I really wasn't even that nervous as I was getting prepared for surgery that morning.  I had fully accepted the surgery and trusted the team and my surgeon.  I felt I was with the best people and I had to get this thing out of me cancerous or not.

It was funny how fast I was knocked out.  After the second inhale, I was out!  When I first woke-up (3.5 to 4 hours later I think it was?) I felt I had just come out of a deep nap at some unfamilar place.  I then realized a few seconds later I had gone through the surgery.  I asked her how it went and she said, "really well".  About 3-4 seconds later I asked again. LOL  Similar response.

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