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 !!