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Desensitization for Scanxiety?

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

I had my surgery 12/13/2016.

  • First follow-up appointment was  12/19 to get the drain removed, staples out, and get the results of the pathology report.  Oh, wait! The path report hasn't been done yet. We'll schedule a follow-up for 12/28 so you can go over the results with the doctor.
  • Oh, wait! The pathology report still isn't done.  We'll reschedule you for 01/04. They say it'll definitely be done by then.  Have a great New Year!
  • Oh, gracious! You won't believe this! The pathology report isn't done.  They say they'll have it by next week, for sure, so we're rescheduling it for 01/09.  See you then!
  • Haha. Oops. Still don't have the report.  You've got another appointment scheduled for 01/18 to get the results for that.  We'll give you the lab request sheet for the CT to be done in 4 months from then.  In 3 months? Oh, that's right. It will have already been a whole month since your surgery.  Haha.

It's gotten to the point that when the phone rings and the caller ID says it's the surgeon's office, it's totally no biggie. In fact, I've taken to answering it with a casual yet cheery, "Hi. What's up?" I even baked them cupcakes today. Soon the office staff and I are going to know the names of each other's pets and when their birthdays are. Desensitization for Scanxiety? Definitely. 

Jerzy

PS -- Preliminary report as the surgeon remembered from the week of surgery was (1) It was chromophobe renal cell carcinoma, (2) Looks as though they got it all (good margins), (3) Didn't have to trim off much of my kidney. Numbers and letters and such may possibly arrive by next week. The delay apparently has something to do with their transcriptionist(s) services. Through this whole silly re-re-re-scheduling, I am so grateful that I'm not a manager or director for a pathology services department / group like this one. Oy -- Workplace stress, and then some!

Bay Area Guy's picture
Bay Area Guy
Posts: 450
Joined: Jun 2016

Sounds like a very good preliminary report.  My RCC was also of the chromophobe type.  From what I've read and from what people on this site have siad, chromophobe RCC is a very non-aggressive form of RCC.  It typically doesn't spread and it typically doesn't recur, so other than periodic scans (and I have my first one since surgery in two hours), you should be in the clear.  I just looked at my path report again and my lesion was so small (1.7cm) that it wasn't even given a rating of any kind.

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

Good choice of shirt colors in your photo, Guy.  I figure I'll be sure to wear some intense / bright colors to scare the chromophobe away.  I mean, doesn't chromophobe mean "scared (-phobe) of colors (chromo-)"? [Yeah -- disclaimer -- I know chromophobe just means something that doesn't pick up the stains / contrast, but we can dream, right?]

It's nice to know, if we were picking RCCs for our Fantasy Post-Neph Team, we'd pretty much aim for the Chromophobe RCCs.  That we get 'em on our team at all just goes to show how special we are. They're what, maybe 5% of RCCs? Oh, and the best kind of Post-Neph Team is one where you look at the day's scans and statistics and yours isn't listed.

Smile

Jerzy

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

...It takes a while to get the results, but let us know how it goes.  My first scan will most likely be in the middle of April. 

Indeed with the chromophobe, I'm looking forward to lots of smooth sailing. Speaking of which, I'm looking at doing some boating, but not where I have to mess with sails.  Not for a while, though. Just the thought of having to toss a line... Argh Laughing !

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

Grab yourself the tiller

and let others do the work. You can be Skipper

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

Sounds good, although there's already a Captain. The wee dog thinks he's in that role. That's due to our riding "tandem" (not on a tandem bicycle -- we've both got a seat but I'm the one with pedals). In cycling lingo, I'm the stoker (even though I'm steering, shifting, and braking -- he's obviously delegated). I guess on a boat, that makes me the First Mate? Anyway, boat-wise, I'm the one both steering and needing to practice my throwing skills (Not to mention, about 147 other skills -- This boating stuff is so cool, but complicated). Oh, and it's a seriously small boat. It's towable, plus will fit in a normal-size garage when it's on its trailer.  So not a whole lot of room for multiple crew and gear. 

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

I believe pronounced coxon or cox. I believe you say 'push & pull' and 'ahoy there' at apppopriate moments.

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

The etymology of coxswain is boat + servant. Sounds about right, but I'm not sure I can meet the weight and height requirements. 

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

You and I could probably talk for many hours, enjoying every minute, without saying anything of substance:-)

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

I beg to differ.  I believe there is a lot of substance in your posts--it may take me a little while to figure out what you are saying, but there is definately substance.

Stub

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

Just remember to bring a shovel and wear chore boots (I'm speaking personally here, but - yes - in a conversation between Footstomper and me, I'm sure it'd really fly but it'd be fun).

Oh. THAT substance?!

APny's picture
APny
Posts: 1987
Joined: Mar 2014

You have a great sense of humor, JerzyGrrl. It's a very novel way of desensitizing scanxiety, lol. And yes, it does sound like a good preleminary report.

Jan4you's picture
Jan4you
Posts: 1326
Joined: Oct 2013

Jerzy girl...what patience you have learned!!! ENUFF! BUT glad you know what "it" is now.

Hope you are healing up and recovering well, are you?

Hugs, Jan

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

Jan,

I'm healing up and recovering well, slowly but surely (and you CAN call me "Shirley").  I am definitely ready to pack it in at the end of the day, though, especially if I don't take a nap. The fact that I'm pretty much up all day long is pretty amazing. 

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

My tumor was chromophobe too.  They tell me that with the size of mine (5.3 cm) and the type of RCC, I have a good chance of no reoccurance.  I'll feel a lot better after a few scans are under my belt.  I'm hopeful you get the same message from your doctor.  Take care, Jerzy.

Stub

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

So there's a group of Chromie Cronies (or is it Chromie Homies?), too? I hope I can remember the meeting times! 

Yeah, my doctor said the odds of it reappearing aren't high.  Good news, definitely -- although I'm not a gambler or a statistician. 

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

that 10 times as fast as you can?  If you search this site for Chromophobe RCC you'll get a lot of hits on past posts.  I've read them and they are extremely interesting and informative.  Take care, my fellow Chromie Cronie

Stub

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

Wow JerzyGrrl! What a fiasco!! I find my medical journey always turns into an obstacle course as well. I don't understand how every step of every issue has to be followed up - every time. Good on you for your patience - and sense of humor! (what kind of cupcakes did you make them? they should be taking you out to a nice restaurant after all this!!)

Sounds good about the chromophobe (I never knew anything about the recurrance - I learned something new!)

Hang in there! Keep us posted when the report actually arrives!

Hugs

Jojo 

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

The mini cupcakes were Wacky Cake, which is a moist chocolate cake. For ease of transport, I didn't ice them, but just sprinkled powdered sugar on the tops. Well, OK, and because it's easier. 

About that dinner, Jojo -- Actually, I think the pathologist should be taking a whole BUNCH of us out to a nice restaurant after this. I can't imagine that I'm the only one affected. Not to mention, I've been thinking, "I am SO GLAD that I'm not the director of that pathology department." Talk about job stress!? Oy.  

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

I had similar annoyances with my pathology report. Like you, I had my surgery before Christmas on 12/10. They promised the report in a week. Nothing. Nothing. Nothing. I (naively) was hoping it wasn't RCC. They told me 10% chance it's not. Even if it was, the surgeon told me it was Stage 1 (under 7cm) so very likely cured.

I was driving to Vegas between Christmas and New Years when the doctor's resident called to give me a message. I actually didn't hear my cell ring, and didn't notice the missed call. So for two days I didn't notice there was a message. I was on vacation in Vegas when I got the message. Stage 3 RCC. Really pissed me off to get notified that way and that they'd told me it would be Stage 1 even if it was RCC and it turned out to be Stage 3, that also made me pretty angry. I actually thought they knew it would be Stage 1 just based on tumor size.

This is why when we tell newcomers they are going to be Stage 1 because their tumor is small, I don't care for that. I KNOW they can't tell what it is until pathology has looked at it.

I hope you get your news soon and it's the best news possible. It seems pretty ridiculous they are taking this long.

Hugs,

Todd

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

I got the pathology report.  Here's a summary of the info:

Chromophobe Renal Cell Carcinoma...  Tumor limited to kidney... Margins uninvolved by invasive carcinoma... Pathologic staging pT1b, tumor greater than 4.0 cm, but not more than 7.0 cm (it was 4.2 cm, so at the low end of "b")... AJCC Stage Grouping: Stage I, T1 N0 M0 (less than 7 cm, no lymph node involvement, no mets).

Actually, I like the "N0 M0," because I'm figuring after the surgery, I've got "no mo' RCC." Planning on keeping it that way.  Woot!

Jerzy

stub1969's picture
stub1969
Posts: 864
Joined: Jul 2016

This pathology looks very similar to mine (other than I had microscopic margins on part of the cut that were not clear).  My guess is your prediction of "no mo RCC" is correct. 

Stub

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

No Mo....and a mic drop to follow.  Ha!

Donna~

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