CSN Login
Members Online: 2

You are here

Just diagnosed

steelr66's picture
steelr66
Posts: 23
Joined: Mar 2018

Not sure if this is all going to make sense, but i'm still a little in shock. I have had kidney stones for the past 15 years and have passed about 8-9 in that time. I had another bout at the end of January and thankfully had a CT scan in the ER and it showed not only a small stone, but also a complex cyst on my kidney. Saw my urologist and he agreed that the CT scan was suspicious and sent me for a CT scan with/without contrast. The urologist confirmed it as a renal cell carcinoma and said it is 4.7cm but is in a "good" spot for laparascopic partial removal. The specialist confirmed that he should be able to spare part of the kidney (unless he sees something behind it that will require full removal.)

My surgery is set for April 3rd and i am going a little crazy going over everything in my mind repeatedly. Doctor said to expect the surgery to take about 3.5 hours and that i will have five 1/2" incisions and one 2" incision to pull the tumor through. Will likely be in hoispital for two days and out of work for 3 weeks. I have never had surgery, never stayed in a hospital, etc...lierally scared numb at this point. Sorry to ramble, but it helps.

icemantoo's picture
icemantoo
Posts: 3331
Joined: Jan 2010

steel,

 

 

Welcome to the club which no one in their right mind would volunteer to join. That was me almost 16 years ago. I was told you have Cancer and they were going to yank out my kidney (there were no paqrtials back then). Lucky you before it got too big. 

 

 

The only reason the doctor told you that you will be back to work in 3 weeks is that he has not had his kidney yanked out. Plan on a bit  longer and if your job is physical plan on longer still.

 

We all felt like you do now in the begining. That will pass with time. 

 

icemantoo

sandy23
Posts: 143
Joined: Jan 2017

We all understand the shock that you are feeling.  It will be a year tomorrow that my husband had his kidney removed.  His tumor was 5.5cm.

Rest assured that the members of this board will be here every step of the way for you and will try to answer whatever questions that you may have.  They were a Godsend to me at this time last year and continue to be.

That man who welcomed you, aka icemantoo, also welcomed me here.  He is one of many absolute heros on this forum that have offered tons of support and advice to so many of us.  

Glidergal365's picture
Glidergal365
Posts: 93
Joined: Feb 2018

I found out in February the mass they were watching from last summer is now 4.5cm (it was 3x3 last July) and it enhances to 15 HU now (was only 6 last summer). He wouldn't say it was cancerous, but it's highly likely it is. I am having a right sided nephrectomy March 29th. I've never had more than my wisdom teeth out. I'm also scared. That kidney is also Atrophic, only about 5.5 cm but he thinks it was like that from birth. I'm grateful that my left kidney is healthy and has already been doing the work. I'm still super scared and am feeling hopeful when I read through the boards here. I'm halfway through Graduate school and a single mom, I definitaly don't have time for this! Cool I'll be thinking of you as we go down this road! 

 

stub1969's picture
stub1969
Posts: 888
Joined: Jul 2016

I'm so glad you found us.  You'll find some really awesome people here that are more than happy to help answer questions and give you support.  Please count us as part of your support system now.  Glider, thanks for filling out your personal page, Steelr, I'd encourage you to do the same.  This information gives the members an opportunity to learn more about you and your journey.  

First of all, what you are feeling is completely normal.  Almost two years ago I was in the same place you are in.  Scared and anxious about the strong possibly of having cancer.  After all, I took care of myself...this wasn't suppose to happen to me!  As difficult as it is, try to catch your breath and collect yourself.  Stay off Dr. Google as your place for information.  Find a good doctor that you trust.  Do some background work on your doctors.  See if they have some RCC work published and review where they received their training.  It's important you feel comfortable and have confidence in them. 

Both of you have a leasion that would be considered stage 1 by their size.  Once they take it out pathology would confirm this.  If this holds true, prognosis is excellent.  My doctor told me about a 95% chance of not having reoccurance.  Things will start getting busy for you both with pre-op scans and preparations.  Keep us updated and ask us questions that you have.  We'll do our best to help.

Blessings,

Stub      

steelr66's picture
steelr66
Posts: 23
Joined: Mar 2018

Thank you all for the kind words of encouragement. I am very fortunate that one of the very first searches on google gave me this site, and i have been reading many posts.

Icemantoo: You are a true inspiration as i have read many of your replys and am always gratefult for the insights and honesty!

stu1969: Same as ice, you are a true inspiration as well. Thank you for the welcome. I will get my profile story filled out asap, i am still learning the ropes of the different abbreviations.

sandy23: thank you for the welcome, i hope your husband is doing well!

glidergal365: well, i guess we are on this path at the same time. i will definitely keep in touch with you and compare notes so to speak :) i will be thinking of you on the 29th.

 

Bay Area Guy's picture
Bay Area Guy
Posts: 498
Joined: Jun 2016

steelr, I've had three surgeries over the last ten years or so.  Two were for issues related to my intestines and were pretty serious.  If you can say anything was fortunate about them, it was the fact that the surgeries had to be done on an emergency basis, so I didn't have time to think about things.  The kidney surgery was the last one I had and, like you, it was a partial robotic, so it was easier, but I had a heck of a lot of time to think about it.  I was first diagnosed with a suspicious lesion in December, 2013, but it was small and the doc at Stanford to whom I was referred said that the standard of care was watch and see if it grows, so we did.  In April, 2016, an ultrasound revealed it had grown very slightly (1.5cm to 1.8 cm), so it was decided we needed to have it removed.  Surgery was scheduled for June, 206, so I had two months to wait.

In terms of what to expect at the hospital, you'll check in probably two to three hours ahead of the time for your surgery.  They do some blood tests and get you all set with an IV line and probably give you something to relax you.  I was pretty well out of it when I got to the OR, but I do seem to recall seeing the robotic surgical equipment and saying (hopefully not out loud), "That looks f...ing cool!".  My surgery was scheduled at 3PM and was completed around 6PM.  I was in a regular room by 8PM and woke up to the sound of one of our nieces screaming in my ear.  The nurse will likely get you up almost immediately, and I was warned that would happen.  I stood for about five or ten minutes and then I guess I was whiny enough that they let me get back in bed and sleep.  I woke a few times during the night, mainly to get something to drink, and slept for about ten hours, until 6AM.  I was free to eat, and I did, as I hadn't had anything for over 24 hours, so I wa famished.  The surgical team, minus the surgeon, came in around 8 and explained that everything had gone very well and that I could likely go home if I could control the pain and could pee.  The only unusual feeling I was having at the surgical site was a little bit of pulling from the stuff they used to cover the incisions, but I had no pain to speak of.  Other folks having the same surgery have reported feeling some discomfort, but I was fortunate in that I didn't have any.  The team instructed the nurse to remove the catheter, and that was quite a relief.  I asked if I could walk, as after my abdominal surgeries, walking was very helpful in getting gas out and in getting my recovery started.  They said the nurse would walk with me when she had some time.  Fortunatey, she had time and off we went.  We walked about five or ten minutes and she said I could go off on my own, just not to leave.  Around 10AM, I reported to her that I had been able to urinate and that there was no blood present in it.  Around noon, the surgeon came in and we talked for a little while and he said that everything seemed fine for me to go home.  He had a nurse practitioner remove a drain that was put in during surgery.  That was a strange feeling coming out, but, again, no pain.  The same nurse practitioner removed the IV and I was free to go.  So, from the time that I got to the hospital to the time I left was about 25 or 26 hours.

In a sudden fit of maturity, I took my recovery slowly.  I started by walking about 15 minutes and then tried to increase that by 5 minutes a day until I was up to about two hours walking each day.  I went back to the gym about 2-1/2 months out from surgery, but I didn't start in on the weights until about two weeks later, and I went very slowly.

Just remember to do as much walking as is comfortable for you after the surgery.  Your recovery will really go a lot faster.

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

Thank God for small favors.  As in the kidney stone?  I too had a laparscopic procedure 5-1/2 years ago.  Not a cake walk, to be certain, but easier than I imagined.  Our imaginations can torture us with all kinds of things that are unfamiliar to us.  I went back to work at the 3 week point and honestly, couldn't do more than 1/2 days and I wish I could have waited another week.  By week 4 I was feeling a whole lot stronger.  Yes, you'll have smallish incisions but keep in mind it's major surgery nevertheless and just listen to your body.  Rest, rest, rest so you can heal properly on the inside too.  You'll heal much quicker on the outside than on the inside.  Be patient.

Best wishes for your upcoming procedure and know we're here for you,

Donna~

kiwi68's picture
kiwi68
Posts: 110
Joined: Oct 2017

Hi, I had a pretty similar diagnosis to you - September 2017. Operated on November 11, 2018, the board here were really helpful with getting ready, knowing what I could expect and expaining terminology.  

 

I had a laproscopic partial which was exactly as your surgeon described, in a private hospital in NZ.   I recovered very well, I would say days 1 - 3 - pretty painful, but as described and I managed with limited pain relief and no post op complications, days 4 - 12 awkward, tired, at home and just recovering and doing a little more every day, focussed on the exercises for breathing, keeping mobile and eating and drinking well.   Days 13 - 21 out and about but not fully up to speed. It wasn't the scars that were a problem, it was the ongoing mild discomfort of internal organs due to what we refer to as 'the rummaging'.  They move a lot of your organs around to get to the kidney.    By month 2, I had pretty much forgotton most of the time, by month 3 I had completely forgotten and in month 4 the only reason I know I had the operation is that I am putting on weight and 2 of my tiny tiny scars are stretching.... (putting down turkish delight right now). 

My tumour was diagnosed as not being a RCC - about 10% are not, so no follow up scans and officially not cancer, just a kidney tumour, which still neeeded to come out. 

I feel that the preparation I made for return home and follow up care helped with a speedy recovery and some mental calmness that I had done everything I could, planned for most eventualities.   This board helped a lot in letting me have a place to find out informaiton, read what others were going through and know that there was a safe place to vent, fall apart, voice my worries with people who are kind, considerate, thoughtful and knowledgable. 

 

         

sueklu's picture
sueklu
Posts: 3
Joined: Mar 2018

im also new and had an ultrasound done with showed a complex cyst 11cm!  No wonder my back hurts.  I am awaiting my MRI have no specifics except that there is 2 mm nodular within the larrger cyst.  Did anyone experience nausea or fever?  I am shocked at the size of this just shocked any comments would be appreciated I just want to get it out!

 

icemantoo's picture
icemantoo
Posts: 3331
Joined: Jan 2010

Sue,

 

 

Sorry about the size.

Many of us are doing well with similar size masses. Fill out your bio under MY  CSN Space. Start a new thread so we can help you thru this.

 

 

icemantoo

sueklu's picture
sueklu
Posts: 3
Joined: Mar 2018

Thank you iceman will do!

Mighty Frog's picture
Mighty Frog
Posts: 152
Joined: Jul 2017

Had mine LPN July 2017. After surgical if possible limit all your activities and rest as much as possible..... get 12 to 16 weeks if possible......As LPN surgical you don't feel much of pain BUT we can't see what happening inside our body. Is a major operation.... so the kidneys need time to heal.

All the best to you! 

 

Angiebby75's picture
Angiebby75
Posts: 209
Joined: Aug 2017

There are many people on this board that have a wealth of infomation. I had my surgery about 4 months my recovery was about the full 8 weeks and I still have some aches and pains. So don’t be overly concerned if your recovery is more than 3 weeks. Prayer for a successful and speedy recovery.

Brock1969
Posts: 80
Joined: Jan 2018

Look I am channeling my inner Icemantoo! And I am just a baby to this forum. I say this only as a tribute to the forum itself...incredible, reassuring people. Only advice I can add that may not be on this thread is two days in hospital might be short. Three is probably the norm and unless you are feeling perfect, let them take care of you! I was battling slight fevers so I stayed an extra day. Make sure you clear your lungs as that I why I was a little feverish....phlegm buildup. Also, three weeks? No. I am on my 4th and will be taking 5. CAN I go back to work? Probably. But I am not rushing things. Also, don't try the whole recovery early. Stupidly, because I am active, I was on the elliptical (not anything too strenuous) at three weeks and also probably doing active things too early. First few weeks are tough then 3rd is so much better you feel it's a green light special to let er rip. Don't. Be smart. 

Subscribe to Comments for "Just diagnosed"