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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!

 

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

I told them that I was James Bond. I told them that I had work to do and had to get to the local high school to do it. I insisted. They thought I was going to have the "DT's". Later I informed them that I have very vivid dreams and I could tell them almost anything after awakening. My sister and daughter are the same way. We laugh like hell sharing our realistic technicolor mind trips. Now I warn them in advance.

HH431
Posts: 41
Joined: May 2015

Is it normal to still be very fatigued after 6 days from the surgery for a partial neph?

I am just dragging still.  The incisions and sore throat feel a tad better - but still rather hurt - but not that too bad.  I mean I can feel a little improvement.

But when do energy levels start to come up a bit more?  I don't recall my fatigue levels being like this although this is my first surgery.

I did a 12 minute slow walk on my treadmill today - and napped for two hours afterwards.  I was just beat. lol

I'm sleeping about 7-8 hours at night, 2-3 hour afternoon naps...and still tired.

I was looking at my blood work online prior and after surgery.  When I left the hospital, my red blood count and Hemoglobin were a bit low but I guess that is normal after surgery?

Maybe I am expecting a little too much from myself too soon?  Some parts of the day I feel better than others.

 

One thing for sure: my appetite has increased a lot the last few days.  I suppose that is my body signaling for energy for further/needed repair.

APny's picture
APny
Posts: 1945
Joined: Mar 2014

I was told to stay off the treadmill for three weeks so I just walked around my house (it was winter and snow/ice outside) for 5 minutes every hour. I would check with your doc about that treadmill.

But yeah, fatigue, low blood count, I had the same issues. But do get another blood test from your GP to make sure you're not lower than after surgery. Anemia will definitely fatigue the heck out of you.

You're not even a week out of surgery so it's perfectly normal to be tired and draggy. I didn't nap during the day but I was never a napper anyway. I think walking more often does build up your strength faster so maybe try that instead of the treadmill. Just walk around your block, or even your house, frequently.

HH431
Posts: 41
Joined: May 2015

Yeah, I will call my GP today.  I have a follow-up meeting with my surgeon on July 9th also.   

The treadmill setting was on the lowest point - which is equivalent to just slow walking really.  But just moving around the house for 5 min periodically I think would be good.

I've never been a big napper, but it just hits me in the afternoon.

My uvula at the back of my throat is not nearly as red as it was, but still noticably larger.  I assume that just takes more time to heal.  Gargling with warm salt water after each meal seems to help.

I would think the increased appetite is a good sign too?  What's the best way to drive your red blood count, hemoglobin, etc back to normal?

 

 

icemantoo's picture
icemantoo
Posts: 3216
Joined: Jan 2010

HH,

 

You just had major abdominal surgery. At 6 days out your recovery is just beginning. As for me it was about 6 weeks still I felt "normal", but I was still weak. Don't overdue it. Each day will get a little better with maybe a bad day in between.

 

Icemantoo

 

APny's picture
APny
Posts: 1945
Joined: Mar 2014

Yes, increased appetite is a very good sign. I had zero appetite for nearly a week and could barely force down some toast and soft boiled eggs. Maybe a few bites and I was done. Don't do anything on your own regarding your hemoglobin; you may only be slightly below normal which is expected after surgery. No matter how good the surgeon there will always be some blood loss. What's important is that it doesn't keep dropping so get a blood test to compare levels to post surgery. I did develop anemia and my doctor put me on 45 mg. slow Fe, which is an over the counter iron pill. But don't take it or anything else unless you're anemic and your doctor recommends it.

HH431
Posts: 41
Joined: May 2015

My Hemoglobin was 11 when I left the hosptial on Thursday; it was 14 before I went in.  Red blood count at 3.36 when I left; 4.35 when I went in.

I'm also now noticing some pain in the kidney area that  had the surgery...I didn't have any there for the first few days after surgery....it was all abdominal and throat.  I imagine that is to be expected.

It's weird I have this long red mark in the skin that is almost internal on the skin in the kidney area I imagine from the partial neph...as that skin is lifted to do the surgery.

APny's picture
APny
Posts: 1945
Joined: Mar 2014

As I said, it's normal to drop some in your hemoglobin and red cells but the important thing is that it did not decrease from 11 but is going back up. So get a blood test as soon as possible. Aches and pains will come and go and with just a week out, it's to be expected.  Most important right now is get your blood count done so you know the fatigue is not from anemia.

HH431
Posts: 41
Joined: May 2015

I talked to my general doctor and he said to just give it more time.  He said I am probably a little anemic right now as I am recovering but normal a week after surgery.

Throughout the day I seemed to have just a bit more energy - no naps. :)

sblairc's picture
sblairc
Posts: 586
Joined: Feb 2014

Just wondering, there is often a lot of blood loss in this type of surgery. As for your energy level, my husband (he was 47 at surgery time and very active/fit) was sleeping a LOT for the first week or so home. He took two naps a day. It will take a while to recover. Take it SLOW and EASY and gradually work up to normal. Remember you are healing on the inside as well with a partial. Your kidney is healing, not just your incisions. He took it slow and was very glad he did. 

 

HH431
Posts: 41
Joined: May 2015

I received no blood transfusion.  Even when I had the kidney drain in, there was not much fluid (blood) coming out.  Good points, just need to be patient.

Yesterday I didn't even take a nap although having just woken up not too long ago this morning, I might need to take one today.

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

Welcome to my world.

HH431
Posts: 41
Joined: May 2015

I meet with the Surgeon on June 9th, but I called to get the pathology.

The PA called me back and said it was Renal Cell Cancer "Chromophobe".  It was a "clear cut" meaning all of the tumor was removed, no spreading, etc.

I did some brief reading; I see Chromophobe is less common (5% of RCC) but not quite as aggressive?  Anyway, it's out!

HH431
Posts: 41
Joined: May 2015

Had some blood work today.  Just been so fatigued and a little light headed, so they ordered it just to be safe.

Hemoglobin and Red Blood Count still a little low, but higher now than right after surgery...and not much below normal at this point which is good.

APny's picture
APny
Posts: 1945
Joined: Mar 2014

That's important. You're not losing blood. Surgery knocks the hell out of you. Hopfully you'll start feeling stronger each day.

HH431
Posts: 41
Joined: May 2015

I am getting cold at times since last night...very slight chills briefly or goosebumps.  No fever.

I talked to the surgeon's office and he can give me a check up on Monday...will probably do that just to be safe.

I noticed my Platelette count is much higher than before or right after surgery.  379 which is still normal.  I was 279 before surgery...220s right after.

Is that common?  The doctor I spoke to on the phone says that number can vary and is still normal, but was just curious.

 

 

HH431
Posts: 41
Joined: May 2015

It's been 12 days since the surgery and I am just still so physically exhausted.

I don't feel like I have that much more energy since leaving the hospital.  I am 43, fit, was very active, exercised, etc. with no other health issues before the surgery.  

I am scheduled to meet with my surgeron on July 9th, and made an appt to see him tomorrow.  I don't know if it's normal to be this fatigued still.

A simple 9 min, slow walk on my treadmill (equivalent to a regular walk) knocked me out like you wouldn't believe.

 

 

APny's picture
APny
Posts: 1945
Joined: Mar 2014

Everyone is different but personally, yes, I think it's normal to be this exahusted. As Iceman always says, this is not a little procedure, it's major surgery. Did they give you breathing exercises to do? I was doing them every hour, also while I walked. It helps your lung capacity. Also make sure you're hydrated and drink enough water. I think instead of 9 minutes in one fell swoop you should do 5 minutes every hour. Just gentle walking. I woudln't worry about being fatigued. It takes a while for your body to recover; it hasn't even been two weeks.

HH431
Posts: 41
Joined: May 2015

I had planned on going to back work on July 6th (prior to surgery). lol Not happening!  I also have some brain fog.

I've increased the water intake.  About 8 glasses a day.  I'm not eating a lot of protein; maybe I need more?  I eat maybe 50 grams per day or so but I only weigh around 165.  Maybe surgery increases protein requirements for repair?  I will ask the Dr. tomorrow.  I wonder if there is any benefit to eating more iron also, but I don't eat a lot of meat. 

I'm going to attempt to go grocery shopping tonight - my girlfriend will carry the groceries for me.  Maybe I just need to get out of the house a little too. 

I was doing the breathing exercises with spirometry, but quit shortly after the surgery.  My oxygen levels were at 100% when I left the hospital.  Any benefit to still doing the exercises?

 

APny's picture
APny
Posts: 1945
Joined: Mar 2014

I kept doing them because it felt like it was helping. Especially while walking. The therapist taught me the "smell the flowers, blow the candles" method while we walked. It's inhaling deeply through your nose, then blowing out through your mouth. Definitely gave me more energy walking. Spirometer also expands your lungs so I would keep doing it.

Honestly, I didn't have much energy for a whole lot for a few weeks. I was afraid of crowded supermarkets that some jerk will smack into my still swollen incision, lol. So husband did shopping and slowly I started cooking. I took iron on advice of my doc. I wouldn't take it otherwise. I ate Greek yogurt first thing in morning, which is good for protein. Just be patient and you'll be fine :)

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

I'm chromophobe too. I am stage 3. I'm glad mines out too but since I'm stage 3 I'm going to have to have ct scans every three months. I'm going to an oncologist doctor at another location just to get more information on this chromophobe

I'll let you know what I find out. There are a few others on here who are chromes

HH431
Posts: 41
Joined: May 2015

Met with doctors today as follow-up from surgery.  All of my symptoms normal from surgery.

Reviewed pathology: Stage 1, Chromophobe. 4.2 CM mass.  I guess they don't grade Chormophobe.  Chromophone is generally less aggressive.

Clean margins of the tumor cut out meaning they got it all.  My surgeon actually went just a bit deeper than typical when he removed it.

Told me my chance of recurrence was in the single digits percentage-wise.

Another scan in 6 mos along with chest x-ray and blood work.. then once a year for five years.  They will alternate yearly between CT scans and ultrasounds.  I can also do MRIs instead of CT scans if I want to avoid radiation which I might do.

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

great news! 

HH431
Posts: 41
Joined: May 2015

Just an update...

Feeling much better now.  Since my last post, it's like a light switch was turned on and systematically I feel a lot better.  I'm around at least 80% of my normal level of energy I would say.

I still get a tad of lightheadedness at times and my blood pressure seems to get low still at times (was only 97/67 earlier today...but then 5 minutes later 107/65).  I've been using the treadmill 25 minutes each of the last five mornings...fast walking.  I am getting anxious to resume my strength training, but need to wait another month I was told.

The incisions are healing well and the pain is almost gone even in the kidney area although I get a little here or there.

Thanks again for everyone's support on this.

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