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Well.....i guess I'm in the club (41 year old male/11cm)

duster10's picture
duster10
Posts: 29
Joined: Sep 2016

 Seems like some very supportive people in here.  It is appreciated more than you will ever probably know.  Got diagnosed 2 weeks ago (Aug 24 2016) with a 11CM mass on/in my right kidney.  The last 2 weeks have been a whirldwind.  Contrast CT does not show any signs of anything anywhere else.  I am being told that the doc wont know if it has spread the fatty part of the kidney until he gets in there.  Having open surgery this Friday (Sept 9th).  He is going in thru the front and taking the nodes and the right kidney.  Said he wanted to be aggressive since I am young and can recover.  Im in decent physical shape.....6ft and 195 pounds, so hoping that is in my favor.  Wont know if it is in the nodes until pathology comes back and he said that might take a little longer than normal based on my age and some special testing they will do.  

My support system is unreal, and I am fortunate in that regard.  I was really positive after my pre-op appt today, but feeling a little "down" after reading some of the recovery struggles, not to mention the fear of the unknown.  I'm a man of faith, so this is truly a test for me.  got a beautiful wife and 2 adorable daughters (9 and 11).  Just feels theraputic to type some of this out.  Any words of wisdom would be appreiated.

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Welcome, Duster. 

I'll be honest, I would have liked to have met you under different circumstances.  I "joined" the club a little over a month ago when I was told I had a mass coming out the lower pole of my right kidney.  One thing everybody on this site told me is to make sure I was seeing a doctor that had experience with RCC.  I took their advice and have been working with Mayo Clinic out of Rochester, Minnesota.   I had surgery a little over a week ago.  Mine was a robotic partial and recovery was pretty smooth.  Yours will take a little more time.  My advice--listen to your body and you'll do just fine.

Scared isn't even the right word to describe the feelings that we have when we are told this news.  Honestly, the first few days I was just a reck.  But, I stumbled onto this site and the people on here are  some of the best people there are.  Contribute to the forum and add your experiences to the conversation.  This is a rich place with a lot of experience and wisdom.

I want to wish you luck in your surgery on Friday.  Being young and in good shape WILL help in your recovery.  Keep your faith strong--nothing is more powerful.

Blessings of peace

Stub 

Shecka1121
Posts: 114
Joined: Apr 2015

Duster, I am glad you posted on here. I was 44 with two young kids when I found out I had a mass on my kidney.  I was fortunate to have found mine small. You can read my profile.  There are several people who have large masses and have their kidney removed and that is the end of it.  we have some on this board.  You will also read some stories where that is not the case.  Each persons journey is different.  You are young and in great shape.  that is 1/2 the battle right there.  Stats show young people do well with beating RCC.  wishing you the best and remember to keep focused on God since you are a man a faith.  This helps me all the time.

 

dancnbear1
Posts: 86
Joined: Dec 2013

Duster, wishing you nothing but the best and passing on my thoughts and prayers. You are at a great site for info. For me I was first diagnosed with Kidney Cancer in '08 which later turned out to be Stage 4 in '13 so I have been fighting this for a while and have found this site to be a great location for knowledge, sympothy, and just general support. Dont be afraid to ask the site your question. Most likely someone has been through it before and can help with the answer. Ok, its now time to kick some Cancer ***.

icemantoo's picture
icemantoo
Posts: 3278
Joined: Jan 2010

But it does beat the alternative. I would tell you that the neph was easy, but I would be laughed off this board. The firstweek post surgery is no fun, but it gets easier after that. Hang in there.

 

 

Icemantoo

duster10's picture
duster10
Posts: 29
Joined: Sep 2016

Thank you for the supportive words.  For some reason. I had convinced myself that recovery was going to be rather easy for me.  I figured I might be out of the office next week, but would probably be able to resume a normal work schedule 10 days after surgery.......I mgiht need to change my mentatlity on that a little bit.  

One additional area of concern........I feel the beginning effects of a cold coming on.  Will they delay my surgery if I am "sick".  Not sure I could wait another two weeks for all of this.  Im ready to get started on this journey to health.  Thanks again.

rhominator's picture
rhominator
Posts: 233
Joined: Nov 2015

Hi Duster, glad to meet you. My radical nephrectomy surgery took five hours -- longer than expected.  Of course, it made no difference to me, but my poor wife.  I'm so thankful that friends from church came and sat with her throughout the entire ordeal.  Please ensure your support system extends to care and comfort your family while you're in surgery.

I'm praying your surgery and recovery are both short and easy.

God bless.

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

Sorry, youre on here but your very welcome. I think Stubbs has got it about right about the fear of diagnosis. Dont worry it is never as bad as your imagination makes it.

But there is a great variety in treatment and experiance. One doctor said to me that the only predictable thing about RCC is its unpredictability.

You'll be fine; great strides are being made weekly in the treatment of this and other cancers.

You need to rethink your return timetable I think. Its not alarming but it is very serious surgery. Mine took 10 hours and a good few weeks to get myself mobile.

I have to go and get irradiated. Good luck. You'll be fine but dont rush it.

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

Sorry you have to join us though.  As others mentioned make sure your doctor specializes in kidney cancer.  Other than that, luckily we have been blessed with extra parts huh?  2 kidneys, gallbladder, apendix and an array of other organs we can afford to get rid of.  In all seriousness though, make no mistake, it is major surgery you're confronting and you'll need to allow yourself the time to recover.  It's hard to say how long that will take you cause everyone is different, as well as their tolerance for pain, etc.  Listen to your body and ease into normal daily activities.  This will be a time to be extra kind to yourself, so be prepared to catch up on reading, movies, sleep, meditation, prayer, or whatever it is you prefer.  After surgery they will give you an "incentive spirometer" for deep breathing exercises, make sure you comply.  This will help avoid a pneumonia from setting in.  The combination of sedation, pain meds and having things rearranged inside leads to shallow breathing and that can be dangerous for your lungs. (I'm a former respiratory therapist, can you tell...haha)

Not unusual to have a sick feeling coming on due to the stress of what you've just been told.  Usually, if you don't have a fever they will proceed. 

I will keep you in my prayers....and that your doctors hands will be blessed with accuracy and speed to get in, do what needs to be done and get the heck out so the healing can begin and you can resume the celebration of life.

Donna~

Teashea's picture
Teashea
Posts: 89
Joined: Feb 2016

Prayers for you and surgery Friday. Your faith in God will get you through any challenge you face. One day at a time and I bet it will not be any time at all until we hear you are in remission. God bless you.

penitent
Posts: 79
Joined: Jun 2016

Duster...plan on taking some extra time for recovery.  This is major abdominal surgery.    My son-in-law also had an 11+ cm mass removed that had basically replaced his left kidney and it took a good number of weeks to get back to anywhere near normal.  Recovery also depends on whether you have a vertical or horizontal incision.  Like you, he is 41 with two small children (2 and 9 mos) and so, also being a man of faith, prayer is 'good and efficacious medicine'.  

I'm glad that he plans on taking the nodes as they certainly can be a spot for metastisis.  God Bless.  We'll be praying for your quick recovery and total cure.

Penitent

APny's picture
APny
Posts: 1987
Joined: Mar 2014

So sorry you have to be here but you'll get tons of support from everyone. Recovery differs for people and I consider myself one of the luckier ones in that it really wasn't very bad at all. My fears and worries over it were way worse. Mine was just a partial but open, and I was able to walk the same night, came home 2 days later, and on the third day was sitting at my computer doing work. No, it's not a cake walk and there will be pain and discomfort. Laughing, sneezing, coughing, those are the worst. So hold a pillow to your incision while doing either of those. I think a lot depends on incision size, how they close it, etc., so depending on all that, yours may too be relatively easy. Don't be afraid to take pain killers the first few days or week. As for work, don't rush back. Your outside will heal a lot faster than your inside. For me the worst thing was the fatigue, not the pain. All the best to you and keeping you in my thoughts.

duster10's picture
duster10
Posts: 29
Joined: Sep 2016

Thank you all for the encouraging words.  I am 40 hours away from surgery, when the true journey begins.  I have anxiety on fiding out if it is contained to the kidney, and then of course the pathology report.  I suppose I should get used to taking everything in steps.  Amazing group of people on this board......thanks again.

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

Just take it one thing at a time. And be reminded of the many years of survivorship of many here beyond what they have been told once upon a time. My husband was 47 at the time, our daughter was 8. With little ones: just tell them what they need to know. Ours knew "dad's kidney was taken out." We waited weeks to tell her it was "cancer" until the surgery was over and pathology was back and he was home from the hospital recovering. Please take it easy from the surgery. Take your pain meds, there is no medal for going without them!! Even now, almost 3 years later, I still say to my husband: "There are no awards for the most yard work done in a day for a man with one kidney, can't we go to Costco??"

foroughsh's picture
foroughsh
Posts: 779
Joined: Oct 2014

Duster

I was 36 once they took out a 10cm malignant tumor, it was not spread so I was considered to be stage two survived patient. I've just celebrated the second anniversary of being rid of it and everything is as good as someone may wish for.

As you're young, the recovery seems to be easier. I spent two night at the hospital but only the half of first night was difficult, I started walking almost 18 hours after surgery and it helped a lot. As I remember I could do all my personal daily routines on my own once I came back home., I came back to work 6 weeks post surgery and after two days I had no problem at work either.

It wasn't easy to remain hopeful but time helped and I'm an optimist laughing girl again.

Opening up with my hubby, going back to gym, talking with a therapist, joining a book club, dancing were among factors which helped me back on track again. I learned I can do no good by worrying and waiting for death.

Wishing you a successful surgery and a quick uneventful revovery

 

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Glad you could come  here and ask for what you need Duster. If you never had any surgeries, I would HIGHLY recommend getting a large lumbar velcro wrap to use afterwards. I have had 4 abdominal surgeries, 2 were laproscopic, and given permission to use this lumbar wrap helped tremendously to hold in those aching, hurting tissues, internally while you heal.

I also used dry ice packs inside the wrap over the incision to help reduce the swelling and as a result used less pain meds. Didn't read all the posts above, but with ANY abdominal surgery, they pump this gas to lift up the abdominal wall so surgeon can SEE. It gets trapped in weird places (and not always inside intestines, but outside), mostly in the shoulder. Now that entrapment won't kill you, but hurts like heck. I kept moving my arm in circular movements to move this gas around and out. Also WALKING helps too, best you can given you have a large incision.

BTW: my brother in law had a tumor encompassing his entire kidney 20 years ago and is still doing great, no further sign of cancer all this time.

YOU my dear, will be in my thoughts and I am sending you thoughts of healing, learning and care!

Gentle hugs, Jan

MattInVa
Posts: 50
Joined: Sep 2015

Surgery is the easy and fun part. Recovery isn't bad. I was riding a motorcyle 4 weeks later after my open radical (10cm). I had a complication of a thrombectomy extending onto my IVC with a partial resection. I was in surgery 6 hrs, ICU 2 days, 3 days recovery...Walking day after ICU unassisted. 

 The real wait is your first couple of scans where the remission part becomes the goal.

 

 

duster10's picture
duster10
Posts: 29
Joined: Sep 2016

Had open surgery on Friday afternoon.  Based on what I am being told, it went rather well.....surgery was about 4 hours.  The tumor was closer to 15cm as opposed to the 10 or 11 originally thought (I guess the pathology report will confirm the actual size).  I am being told it WAS contained to the kidney based on what the surgeon said (GREAT NEWS!!).  As I mentioned before, they took some lymphnodes and those will be anlayzed.   Doc said he hopes to get the pathology back on Wed (praying for more positive results).  I came home yesterday, less than 48 hours after surgery.  Modern medicine is really amazing.  I feel pretty much like crap, but Im surviving.

Thanks again to all the support on here.....means a lot.  

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

Now it is time to rest and listen to your body.  Healing will take a while.  Schedule your walks and gradually add distance and pace.  Your body will tell you if it's okay to speed up or go an extra lap.  Push it a little, but not too much--it's kind of a balancing act.  You'll know what I mean.  I'm glad it all worked out and ,yes, I'm praying for good results on your path report.

Blessings your way!

Stub

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Glad it's behind you and you're home. Yes, do take it easy and don't push too much. Walk a lot and drink lots of water. I walked around my house for 5 minutes every hour. It was winter so couldn't be out in ice and snow. Also, if they gave you a breathing apparatus (spirometer, I think) make sure you use it to keep lungs at maximum capacity. Best to you and hoping for a good path reoport!

LauraM3's picture
LauraM3
Posts: 27
Joined: Apr 2016

Your faith in our God will carry you through this time in your life.  Believe!  Hope!  Pray!  :D

 

donna_lee's picture
donna_lee
Posts: 962
Joined: Feb 2009

So sorry the initiation ceremony leaves you with your butt hanging out.  You can read my stats by clicking on my user name, so I don't have to repeat myself for everyone.  It was Dx'd at Stage IV with a recognized mets to the liver on the ultrasound, done to see if I might have a gall stone.  Oh!  Was I surprised.

On Wed. after the CT last week, I'll find out if I've passed the 10 year mark.  What really makes me happy this week are that all the tests my daughter-in-law went through the past two weeks say there is no breast malignancy, just cells that are not quite normal-an adenosis-but benign on biopsy.

It's a love/hate relationship with tests.  You 'gotta have them, but sometimes the news can freak you out.

Don't be in a great rush to return to work.  Your muscles are weak and you fatigue easily at this time.  If you tend to over-do, you'll know it and more than likely ease off on doing too much.

Best wishes on a comfortable recovery.  At 6 weeks, after being released to do normal activities, I started walking in the pool and built up to swimming and exercising in the pool.  Senior rate didn't hurt, either.

donna_lee

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

Welcome to the club that nobody WANTS to join.  Glad you made it through the surgery OK.  Take it easy but -- like others have said -- remember to work on the breathing and walking stuff. 

And naps.  Work on naps.  Looks as though you have a great little physical therapist in your photo.  Not sure if it's a lap dog (or a yap dog), but hopefully as a NAP dog your furry friend will be able to give you some good pointers. 

Jerzy

duster10's picture
duster10
Posts: 29
Joined: Sep 2016

you really are.  Such positive vibes.  I am expecting my pathology either today or tomorrow.  Can anybody begin to prep me on what is good and what is not so good?  I like my Doc a lot, but I would like to be able to ask some constructive questions when he does in fact call me.  ANy input is appreciated.  thx

 

Oh and as far as the NAP dog, that is y beloved Wheaten Terrier......we had to put him down about 3 months ago, which was one of the toughest things we have ever done.  The good news is that just yesterday the breeder emailed me to tell me her dog (also a Wheaten) was pregneant and due in the middle of Oct.  We havent told the kids yet, pending the pathology results, but i viewed it as a sign that things were going to be OK.

JerzyGrrl's picture
JerzyGrrl
Posts: 760
Joined: Jun 2016

You'll have some good framework for questions to ask when you get your path report. 

Sorry to hear about having to say goodbye your fuzzy guy, but -gracious! - the thought of you potentially having a sweetie wheatie back in your home by the end of the year is wonderful news. 

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

This will be on your path report but you may want to follow-up with these topics: Type of cancer, Grade of tumor,  sarcomatoid features?, Necrosis features?  Because of the size of your tumor, you may want to ask about meds or trials--your doctor will probably lead this discussion.  Some people on here may even ask you to seek out an oncologist.  Also, because of the size of your tumor, I'd push for frequent follow-up--3 month compared to 6.  These are just a few of the topics you may consider.Wishing the best for you!

I'm a dog person, too.  I'm an avid upland game hunter and have a German Wirehair Pointer.  Fantastic dog with a great personality and family dog.

Stub

Kangaroorex
Posts: 45
Joined: Jul 2016

Glad to hear you made it through surgery okay.  I was out of active office travel for 5 weeks after surgery but was working from home on monday (surgery was the previous friday), but I love my job and I like to keep busy.  Its been said before, rest and dont push yourself too hard but do keep yourself as active as you comfortably can. 

I would also recommend a shorter time between scans, at least until they are sure there is nothing active left in your system.  Best of luck with your recovery!

penitent
Posts: 79
Joined: Jun 2016

Don't be a hero...it's okay to take it really easy for as long as it takes.  I'll second the note from Stub above...type, grade, sarcomtoid and necrosis % are the key things you'll want to know.

Now, just get well...and know that all of the 'club' members are in our prayers.

duster10's picture
duster10
Posts: 29
Joined: Sep 2016

from the doc about the pathology.  HE said it came back as "classic" clear cell.  No sarcomtoid (which I am gathering from you guys is VERY good news).  Lymphnodes were CLEAR!  HE said that based on the size of the tumor, this was best case scenario.  There was nothing difinitive if it had invaded the fat of the liver, it was not a clear yes or no, so based on that, they are going to scan me every 3 moths for the next 2 years, and then 1 year every year after that.  I asked him how big the actual tumor was, and he said he didnt have the pathology in front of him......he was in the car.  I did not ask about Necoris%.....I really dont know what that is?  He did finish up by saying that this was all good news, and I told him i was a "numbers" guys ad he said that he would put me in 70/30 it DOESNT come back, but if it does, it will likley be in the next 2 years.

Cant thank all of you enough......my wife is in tears right now.  I think my days of filet mignon are essentially over.  She is converting the kitchen into a cancer fighting machine.   So, in closing, I am currently NED.  I will continue to stay active on here and offer support to those in need in the same way you guys have supported me.

We are going to tell the kid tomorrow that we are getting the puppy in Dec.....they will be so excited!

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

Well done Duster mate. I reckon you and your Mrs deserve a week in Venice with and option on Verona and Tuscany. THEN think about going back to work

(Oh enjoy the mushrooms and kale)

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

This is really good news Duster.  I also hope you continue to contribute on here.  I'm less than two months out from when my mass was found and find it theraputic to read and post on here.  Your story and experience WILL help others that find out about a mass the size of yours.  They will find hope in what you have gone through.  I guess this is how we can pay it forward.  I'm very happy for you and your family with this news.  Celebrate in a restful way:)

Stub

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

Glad to hear things went well for you and now you are on rest and recuperation mode!  

penitent
Posts: 79
Joined: Jun 2016

So pleased that you had such good news!  Glad tidings!   

BTW, necrosis is evidence of dead/dying cancer cells that basically indicate that the tumor is/was growing so rapidly that it couldn't keep up enough blood supply to keep those little bugger cells alive.  0% necrosis and no sarcomatoid features is wonderful.  Enjoy your day and just get well.

 

APny's picture
APny
Posts: 1987
Joined: Mar 2014

Great about your path report!

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

Awesome report. Believe me when I say we all get very proud.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

YAAAY!! and a puppy too~

Thanks for this update! Hope your healing goes well..do not rush it!

Gentle hugs, Jan

love_of_my_life
Posts: 77
Joined: Jul 2012

My wife was 41 when she had her right kidney removed 4 years ago.

She went in for her annual checkup today as she is still cancer free.

Prayers are with you buddy!

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