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Finally, my story briefly

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

I'll post on my "about me" page but I figured it was about time I posted a bit about my story. It's a bit convoluted so I'll keep it at a minimum. I'm a college professor that teaches in medical imaging (this includes CT, x-ray, and ultrasound) and I've actively worked in the hospital patient care setting for well over a decade as well before moving to academia full time. In January of 2014 I was demonstrating a new ultrasound machine and while scanning myself, saw what appeared to be a mass on my left kidney. While not a typical solid mass appearance I did go have a CT with and without contrast that day. One of my co-workers read the CT and issued the report, I also read the CT, there was zero enhancement, other than a small area where the contour of my kidney changed slightly, there was no indication of a mass. It was assumed to be something called a persistent lobulation (a bump in the kidney leftover from when my kidney developed). One year later almost to the day I was demonstrating a new machine and this time I saw the mass and knew immediately it was RCC. I wasn't sure how much the area had grown but this time it was a clearly defined mass. I had a CT within a day or two and this time there was a clear mass with definite enhancement. I called the urologist I knew I wanted and on February 16 I had a robotic assisted partial nephrectomy. Path report came back as a 2.9 cm clear cell RCC Fuhrman grade 2. This put me at stage T1a. I had a noncontast CT in June which was all clear and will have a with and without in October. So far, so good! Hopefully I'm done with it forever. I have a seven year old and it terrifies me to even think about this coming back. Anyway, that's it for now. Reading this forum has allowed me to keep my sanity through all of this and not allow panic to take over, for the most part. So, I appreciate you all and figured it was finally time to say hello!

APny's picture
APny
Posts: 1949
Joined: Mar 2014

Hi and welcome, though I'm sorry you have to be here. Your chances for being rid of it permanently are excellent, though of course nothing is ever 100 percent. I too had a stage 1a RCC, and while I'm optimistic it's all over with, I still get anxious when it's check up time. Like in two weeks. All the best to you and most likely you'll be around to dance at your grandchildren's wedding :)

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Thanks! I hope your scans go well! I have my next scans in a couple of weeks also. 

elaineL
Posts: 6
Joined: Sep 2016

Be thankful for how early you caught it. Keep up your appt. and scans and be very on top of it . Be proud you are holding it together, it is a tough one !

 

 

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

There were plenty of times I felt like I wasn't holding it together so well!

daisybud's picture
daisybud
Posts: 461
Joined: Jan 2016

Welcome 

I was also stage 1A grade 2. Had part lap this past February.  

The people on this site are Great!  I also got anxious when I had 6 months mri followup. Just part of my new normal.

Kim 

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

New normal indeed! 

icemantoo's picture
icemantoo
Posts: 3227
Joined: Jan 2010

Kat,

 

With all these connections maybe you can get thru to some of these surgeons who tell their patients they can go back to work in 3 weeks when they are not ready for that. Yes we do see posts complaining about that.

 

 

Icemantoo

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Ha! Even with a partial robotic assisted, I was told 6 weeks out. Doctors need to be careful about pushing their patients and giving them false hope about being up and around so quickly. The surgery and subsequent healing takes so much out of you!

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

That's an awesome bio!  How fortunate you are in a field that allowed you to have this finding so early!  Can you imagine if that was not the case?  May have been years before that little beast was found.  Someone's watching over you......you were placed in that field for a reason, besides the fact you're such a great resource.

God Bless,

Donna~

Donna~

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

My surgeon said "You don't feel it right now but you're very lucky!" I know I was and am. I have access to things and people others don't and years ago I was put in this path for a reason. Like my anesthesiologist said, "you saved your own life!" Lucky indeed.

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

I'm not sure whether it would be an advantage or not to be so knowledgeable of the process. Welcome

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

You know I've asked myself the same question. It helps knowing what my reports mean, having doctors I can call with questions, and knowledge of the process. However, when you know so much, it's verh difficult to just sit back and put yourself in someone else's hands. I know the what if's. Luckily, my surgeon is wonderful and I trust him totally.

angie328's picture
angie328
Posts: 11
Joined: Sep 2016

New here too and I'm also so glad you found this early...amazes me how fast it grew in 1 year...are getting scans once or twice a year going to be the norm? I guess better safe then sorry...just curious. 

You will be in my prayers and I would like to thank you again for your input on my situation.  

Love and Hugs,

Angie

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

You're welcome! It was definitely a shock when I saw it a year later!

Iggyrip
Posts: 43
Joined: Sep 2016

Welcome Katt, this is a great site and great group of people. I am also new, and waiting for surgery. I have a 6cm mass on my upper right kidney. Found it by accident looking for something else.

Wishing you a speedy recovery.

Iggy

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Thank you! Have you had surgery yet?

Iggyrip
Posts: 43
Joined: Sep 2016

Not yet. It's scheduled for 10/12/16. i just want to get it over with and see where I am at.

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

I have felt fortunate that my background as a physical therapist has helped me make far too many recoveries from injury, illness, and surgery. I have a masters in hospital management and and well versed in medical politics. I can usually get what I want although sometimes I get too absorbed in the role of being my own primary care advocate. My oncologist has told me that he enjoys my active participation and we can get down to the real business of addressing my health issues. I'm lucky. It works for me. How about you?

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Whenever I start with a new physician for any reason I start by telling them my background. Then I tell them for that reason, the more info the better. I like them to know ahead of time that they won't overwhelm me, that I need to know everything to be comfortable. It has worked really well so far. My surgeon was able to speak frankly with me about recovery and follow-up scans and we discussed the protocol for after surgery. I think it's refreshing to physicians sometimes to just be able to put it all out there without softening or sugar coating. Just facts. 

Jan4you's picture
Jan4you
Posts: 1322
Joined: Oct 2013

A warm, Welcome, Kat! Sorry you had to even go through all this. Good you have availability to  catch this early.

My hope is that this is now  going to be behind you, so you can finally relax and enjoy your life and your family!

Hang in there!

Hugs, Jan

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Thanks Jan, that's my hope too!!

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

Welcome to the club none of us want to join. 

I'm impressed that you didn't just lose it right then and there while demoing your US magic - either time. Still, it's tricky when the professional vs the patient vs the ordinary human have to switch places quickly. 

May you have many visits from "Uncle Ned" --

Jerzy

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

I think it was one of those cases where I knew with very little question what it was and I knew the steps and what was going to happen. So, I went into "take care of business" mode!

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

My goodness!! That is quite a story of your cancer. I'm so glad you are doing well. Welcome!!

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

Thank you! I was quite the talk in the OR. "Did you hear she found this herself?!" Telling the story so many times kept my mind off the surgery. 

Allochka's picture
Allochka
Posts: 874
Joined: Nov 2014

Welcome! I've never heard of anyone diagnosing herself that way, what an extraordinary story! 

Your chances of leaving it behind forever are awesome!

Kat23502's picture
Kat23502
Posts: 179
Joined: Feb 2016

It has been quite a story, hopefully all done now! 

KrisKB123
Posts: 4
Joined: Oct 2016

My internist ordered a Heart Scan for me, and when I called to make the appointment the woman doing the scheduling suggested that I "upgrade" and have a full body scan for an extra $500. I scheduled the full scan. Ironically, upon arrival at the facility, the young man doing the scans tried and tried to talk me out of it. My husband said "Hey we're here. Get it done!" A 9.5 cm mass was found on my left kidney. My internist called me and immediately scheduled a CT with and without contrast, and referred me to a urological surgeon in a university setting. The next opening was 4+ weeks away, but I understand this surgeon is superb. I had a radical nephrectomy on September 23 and came home 48 hours later. The results were a RCC Stage IIb. I am on post-op day 10 and still in a lot of pain - I am actually surprised since I typically have a very high pain tolerance. I have low energy and decreased appetite. Can anyone share their post op experience if you had something similar.

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

It does get better. I'm guessing you're having Physical therapy and doing the lung excercizes with the blowing thingamygig. It took me weeks to get to what I considered a satisfactory level. I also took a lot of powerful painkillers. I would guess that youre right at the end of the intense recovery period. If it continues then of course you need to phone your doc. But your body has taken a hell of a bashing with the surgery. I dont think anyone really expects the nature of the recovery period. I thought I would be back at work after two weeks. I was crazy.

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

And welcome!! Yours is quite the unique story of how you found out. Kudos to you for going into "taking care of business" mode. Aren't you glad you made this your career choice?

I am sure it will be smooth sailing here on in!

Hugs

Jojo

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

My son was 7 years old when I was diagnosed. My cancer was found when I had a kidney stone. Very scary to think of being sick and not being able to give my son the kind of attention and life my 3 older kids had. As it has worked out I have been able to take my son on a few vacations. My son will be 18 soon and I am still here. Best wishes to you. One day at a time!

mrou50
Posts: 389
Joined: Mar 2013

That is quite a story to essentially diagnose yourself that is incredible.  I would have been terrified you are a very brave and strong person.

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

My interaction at Yale/Smilow with all the professional staff has been very rewarding. It confirmed my faith in all of us in health care. Yale is world famous and these doctors and students are unquestionably some of the most brilliant people in the world. I love it. The radiation I finished last week was exact to my description to the oncologist. Right down to a supraspinitis tear from growth from my coracoid. I like blowing their minds. It's been almost 6 years with my caregivers so we can have alot of fun despite the seriusness of our meetings.

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