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another Newbie" with incidental discovery

Bonstrow's picture
Bonstrow
Posts: 3
Joined: Jan 2012

Hi Everyone,
Wow what a wonderful source of info you all are!! Im sorry to say I am now part of the exclusive RCC group..
A little background on me...
Im a 54 yrs old Registered Nurse & have had chronic back pains for years & years. Have done all the treatments in the past from chiropractors, acupuncture & epidural steroids with varying degree of success but it seemed they would work for a while but always came back. So I decided to go to an Integrative medical practice "One stop shopping" for chiropractor, pain management physical therapy etc. So far so good... they wanted me to get an MRI to see what they were dealing with & plan treatment. I had the usual stuff herniated & bulging discs etc. I go back the next day for a physical therapy evaluation. The Doc said he got an addendum to the previous report.. the radiologist even called himself !! The "incidentally" found a pretty large mass on my right kidney. That day 1/13/12 is when it hit the fan!! :-) Funny thing cause friday the 13th has always been a lucky day for me. I guess in a way it still is because of that MRI they found my tumor!!

Original measurements were 7.9 x 6.6 cm.. pretty big & already into stage 2 due to size alone.

1/17 had MRI with contrast of abdomen which verified the incidental findings.
1/18 appt with urologist who said it had to come out & ordered CT scans of chest & head and whole body bone scan.
1/23 CTs & Bone scan were done.That evening Urologist called me, bone scan was negative but... chest CT has a few very small nodules (recommend follow up in 3 months) and head CT found very small mass. I was just terrified!
1/24 had MRI of head with contrast.. I think I now glow in the dark !! This confirmed mass less then 1 inch in right temporoparietal region - meningioma is pretty much the diagnosis which is about 90-95% benign. They arent going to do anything about it till after my scheduled total nephrectomy on 2/7. They arent too worried but of course I am !!

Im so lucky that I was able to have all the testing done in record time. It has cut down on the waiting but now Im waiting till
surgery on 2/7.

Urologist is planning to do a total laparoscopic nephrectomy with renal embolization the day before. What that does is pretty much cut off blood supply to kidney making it smaller & with less bleeding during surgery. Tumor is just too big to resect as it would leave virtually nothing left of kidney so why bother. As a nurse I did a TON of research online.. sometimes a little knowledge is a dangerous thing !! lol!
I had asked about the DaVinci Robotic System... My Urologist (who does use it when appropriate) said that for nephrectomy its kinda just a gimmick... its wonderful for other things like prostate surgery but frequently takes longer to do then lap surgery w no real benefits. With my tumor being so big Im still going to have an incision about 3 inches long so they can take the kidney out!! I was watching video of the surgery & its really cool that they put a plastic bag inside to capture the tumor & pull it out! Maybe thats because Im a nurse that I find it interesting !!

Anyway.... I hate the waiting & have taken xanax for the first time in my life to cope with anxiety & so I can sleep. Im still stuck with the back pain that brought me to this saga in the first place. A small part may be due to kidney but they arent too sure about that.
I feel sorry for those of you that had to wait months for tests & surgery dates.. I think i would have gone crazy!

Im trying to have a positive attitude, taking each day as it comes etc... but its definitely a challenge. I have only told family so far & am trying to decide what & when to tell my close friends....frankly Im tired of telling this story over & over again.
Any advice on what to say or what worked for you??

Definitely NOT looking forward to surgery... truth is I am a BIG coward. I am a wonderful nurse but a lousy patient !!
Bring on the pain meds !!!

Thanks again for listening & having such wonderful advice here!! If all of you can make it through so can I !!

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

Hi,
Hate to welcome anyone into this no fun club but you will find it to be a great source on info and with plenty of sympathetic ears. I am 8 days post op for a hand assist total neph. I am feeling good, walked 2 miles today. The first few days are tough but for me, the difference between day 2 and day 3 was night and day. I had to wait 6 weeks for my surgery , that was tough, just wanted it out. Your date will be here and over before you know and you will back on track. I used the weeks leading up to my surgery trying to get in the best shape possible and it has certainly helped.

Best wishes and God bless,
Wayne

cww71964's picture
cww71964
Posts: 95
Joined: Dec 2011

As far as telling people, I told my immediate family then my wife sent out an email to all of our friends and relatives to just get it all out at once.

Wayne

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

Sounds like a lucky day for you. You found out and now you can start fighting back before it gets any bigger. As far as being a nurse I was the one who used to be scared when they drew blood.

Best wishes,

Icemantoo

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Maybe telling all to your close friends will eliminate one thing you're worrying about. I've only told a handful of people about my own situation, on a need to know basis. For me, I don't see a need to do so until the picture is a bit more complete, (when it might cease to be an option not to anyway) but if it's a source of worry for you then why not get the news out and reduce that worry. That way you'll have more moral support too.

It's a good thing that you're both a nurse and a self-confessed coward - that should guarantee that you use the pain relief as much as you need! You'll also know more than the rest of us about how to ensure you speed up the healing process and avoid setbacks.

As regards the surgery, I had a tumour just a little larger than yours. A lap. procedure had to be converted to open with a lot of bleeding and an extra 4 hours in theatre. To complete the job a cut of about 10 inches proved necessary and my first two days post-op. were very painful but I've been fine ever since a few days after surgery (was on 100 Mg morphine and max. paracetamol daily and took a month to get off the morphine). If, as I'm confident they will, they only need a 3" cut to do the job for you, it really shouldn't be too bad at all.

Stay positive and try not to worry - as a pro. in this field you know it's counter-productive.

braswelm's picture
braswelm
Posts: 41
Joined: Oct 2011

First, welcome to our reluctant club, and keep the positive attitude. It will go a long way.
I too suffered years of back pain, which is probably one reason I had no clue about the tumor. But I had noticed over the last year or so that each time I laid on my back, the pain went from my hip into my leg, and the front side of my leg went numb. Since the surgery, I have had none of those symptoms. Still some back pain, but mostly from weak stomach muscles.
I had a 7.8cm tumor, had to wait about six weeks for surgery, and had lap radical nephrectomy, but he had to make the largest incision about 6 inches to get everything out.
I did tell people about my cancer, one, because I am a pretty open person, but two, it helped me to talk about it.
Keep in touch on here, it will help you to hear other stories.... and listen to the iceman!
Mike

foxhd's picture
foxhd
Posts: 1920
Joined: Oct 2011

May not be a Duncan donut, but sure is a "Sucks Don't it". It is strange being a patient when one is usually the caregiver. We don't make good patients all the time because we understand the system too well and don't like not being in control. But here you are. Good luck with your procedures. Get better, and stay on board. Alot of non medical people will need your insight because shortly you will no longer be the newbie.Our group grows daily. Get healthy!

Bonstrow's picture
Bonstrow
Posts: 3
Joined: Jan 2012

Time sure does fly... well not really !!

Here it is a few days away from surgery...
I havent been reading or posting because I actually lost this website... lol!! Couldn't find my way back (now I have it bookmarked !)

Well I have told some of my very good friends & they are very supportive as I knew they would be...

Do you ever find you just get so darn tired of repeating the same things again & again to different people?? Maybe I will print up a sign or paper for people to read lol!! "Yes I have kidney cancer... im having surgery to remove my kidney... yes i have to have this done... YES i have done research...No please dont come to visit me in the hospital !! (I look like hell without my makeup lol)"

Anyway... I met with my urologist tonight & got some last minute info & I will be having an embolization on monday... Anyone have any experience with this.. the literature says that "post-infarction syndrome" is not too pleasant - flank pain, nausea etc....

Im staying the night for "observation & pain management" doesnt sound like too much fun !
then its off to the OR bright & early tuesday morning. Urologist says hes going to do a radical not simple nephrectomy but not to get hung up on the terms because although hes going to take the fat surrounding kidney he wont take adrenal gland (only a bit to biopsy) so technically really isnt a radical....

I should be out by thursday or friday & he said I would be coming back in a 5-7 days to check suture lines (no staples !! I hate them cause they pinch till they are removed) & go over the pathology reports. He said the reports would be back by then !!
Then he will stage it & see if we need to do anything more except watch...

Everyone thinks Im crazy (well I am but not because of this lol !) but because... Im having a few good friends - 4 other couples for a superbowl party... Go Big Blue we are Giants fans !!
Im not making a huge spread & thought it would keep me busy & not thinking of my upcoming surgery!!
I thought diversion would be a good thing !! I plan to pretty much buy everything & we are going to bring in pizza.

My doctor said I could have a beer or 2 but not to be hung over on monday... because it causes dehydration !! I told him he better not be hung over either !! Good thing we both have a sense of humor....

Take care everyone & I'll be back in a few days... minus my right kidney.

icemantoo's picture
icemantoo
Posts: 1554
Joined: Jan 2010

What a way to usher in your new membership. As for your friends not understanding Kidney Cancer this Super Bowl thing is really going to confuse them.

Seriously why not start this journey with a bit of fun, but what if the Giants lose?

It is important for you to be able to have a few hours when you are not thinking about the Kidney Cancer because it will be weeks before you can party again.

Best wishes on the surgery Tuesday. You have I am sure read my posts that you can not sugar coat the surgery, but things do get better each day.

Icemantoo

Bonstrow's picture
Bonstrow
Posts: 3
Joined: Jan 2012

Thanks for responding Iceman...

The Giants better win or my husband will be miserable to live with !! possibly worse then I will be after surgery!!

Im well aware of the surgical "experience". I will be having it done laparoscopically with a small incision to remove the kidney. Im prepared for a difficult week or 2, but think I should be feeling better by 2-3 wks out... not ready to run a marathon (which im not doing anyway !) but well enough to drive & get my nails done... I do have my priorities lol !!

garym's picture
garym
Posts: 1651
Joined: Nov 2009

Bonstrow,

Hang on to that sense of humor it will serve you well from now through recovery. Good luck on Tuesday, I'll be sending good vibes your way and while I'm normally a Lions fan (sick I know), I'll take Eli over Tom any day.

Here's to a speedy recovery,

Gary

Cool Breeze
Posts: 3
Joined: Feb 2012

They found mine because of a hernia. I'm so thankful for that. I haven't had my first year check yet. I'm kind of anxious about it. I was so tired of all of it I just shut down. I didnt do my 6 month check up. Now after reading all the posts on the furhman scale I have to say I'm frightened. I had no idea about it. My doctor told me nothing about it. I have stage 1 grade 3 RCC. Because I'm RN I have delt with everything with my nurse hat on. I had a break down after my surgery. I quit my job and stay home for 3 months getting my head back on. But as I get closer to my first year check up I'm feeling anxious. Yeks!

earnric's picture
earnric
Posts: 34
Joined: Jan 2012

Only a day away today... but I know how the waiting can drive you crazy. I wanted surgery like 2 days after discovery (I had the lap/robotic).

Hang in there and you'll be on the mend very soon!

Rick

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