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1st follow up appt, best news ever!

girlypants's picture
Posts: 31
Joined: Jan 2012

Today I had my first follow up post surgery. The grade of the RCC was one and two. Clear margins, all of the tumor was removed from the kidney. The kidney is functioning better then it was before surgery! Before the cretin? not sure if that is the right term he used, was .60, day after surgery .69, now it is .55. We caught it so early that I will be able to live a normal healthy life. Since I am 28 I have a 6% chance it will come back to the same or other kidney. Will be doing yearly ultrasounds, and ct scans every 5-10 years. I am going to shot for the 5 years on that.

I cant even describe the feelings I am having right now. I am happy and excited and feel like an act of god or miracle has just saved my life. The way things played out it was a miracle they found it. There is a reason I was put on this earth and a reason I lived. Now I have to find the reason and make this the best life ever!

garym's picture
Posts: 1651
Joined: Nov 2009

See, we told you it would all be worth it!! Normally its CT's every six months for the first few years, if they are suggesting that you don't need one for five years I would question that. You need to be vigilant regardless of the odds.

Posts: 48
Joined: Oct 2011

GREAT results with the surgery-Live long and prosper!

As far as levels go, normal adult male runs between .6 and 1.2, adult female runs between .5 and 1.1. An adult with one kidney has a new normal of1.8-1.9.

Sounds like your in great shape- Go forth and pee proudly!

Best thoughts and wishes. Alan

foxhd's picture
Posts: 3183
Joined: Oct 2011

See..all that worrying. All that spent energy. And to think you could have been planning a party instead.We'll be there at nine. One more thing. Insist you get scans more often.

rae_rae's picture
Posts: 300
Joined: Oct 2010

Congrats on the great news! I am happy for you! I concur however- more frequent scans!

gwhite's picture
Posts: 18
Joined: Jan 2012

I can well relate to the joy you must be feeling right now. I thought your post was exceptionally well written. The last sentence was, to me, the best of the lot. I say this as one who ended up finding his life blessed by a terrible kidney cancer. You have taken the first steps on what could be an incredible personal journey. My best wishes and may you never lose the zest for life that you have found at this moment. - gww

myboys2's picture
Posts: 50
Joined: Nov 2011

I am so very happy for you. You are a young lady who has lots to accomplish and do still.

Gail mother of Cody 21 (almost NED :-)

icemantoo's picture
Posts: 3354
Joined: Jan 2010

I told you everything would be OK after your first post.


girlypants's picture
Posts: 31
Joined: Jan 2012

I am still happy. But how often should I get checked up? Once a year sonogram and ct scan every 5 years was what the doctor said. Is that the norm for everyone on here? Do the blood test give anything up?

garym's picture
Posts: 1651
Joined: Nov 2009


My pathology report was, in my urologists words "The best you could possibly hope for." and still its CT's every 6 months for two years (just passed that mark) and yearly thereafter through year five. Sonograms are probably a good idea as you avoid the risks (slight) from radiation, but six month intervals would be more "normal", just my opinion though.

earnric's picture
Posts: 34
Joined: Jan 2012

That is some good news girl! Good for you!

I had a 3.5cm mass removed on 29 Dec... First follow up is in 3 months. I think I'll be getting CT scans every 6 months or so for the first couple years ... then maybe yearly. I'll find out more next checkup.


Posts: 111
Joined: Feb 2009

first off, CONGRATULATIONS, on your great path report. you should be happy and i know you will have a great life. there is no one procedure for follow up that everyone should follow, but in the research i've done, its usually every 6 months for at least the first year. that should include a ct scan of chest and abdomen or ultra sound and chest xray. and blood tests to check the kidney function, this is especially important if you're having the ct scan because of the contrast that is given thru iv to get a complete picture of what's going on.
i have read that after that first year you can go to once a year for imaging and blood work.
i think you should ask your dr. if having some imaging done at the 6 month mark would be a good idea, and then once a year. whether its ct scan or u/s is different with each dr. and the patients personal history.
i had 2 years of ct scans/bloodwork every 6 months because of a nodule that was found on the original ct scan before surgery. after 2 years with no change my urologist said i could go to every year, but because i had breast cancer 3 years before this diagnosis my oncologist stills does imaging every 6 months, for 5 years. alternating with u/s and chest xray and then ct scans the next time, with blood work done every 6 months before imaging. also, i see my urologist once a year and he does urinalysis and a u/s of my remaining kidney in the office at my visit.
dec. was 3 years for me and all is still clear THANK GOD and june will be 7 years since my breast surgery and GOD willing that will continue to be in remission. i have a mammo once a year. it was every 6 months for the first 3 years. hope that helps somewhat and didn't confuse you more. the best thing to do is enjoy the good news you have now and then make a plan to speak to your dr. before your 6 months comes around, if you don't have an appt. scheduled, i would make one so you can speak in person and ask all your questions.
again, wishing you continued good health.

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