Second opinion stuff...

JerzyGrrl
JerzyGrrl Member Posts: 760 Member

I'm ready to get the second opinion, I think.  Tomorrow morning is another CT, then a review with my primary physician, then... Another specialist (yup, RCC kinda specialist). Don't know the time frame yet, except it'll be soon that I follow up with my primary. 

In the meantime, I'm repacking my scanxiety survival kit --

  • Two sharpened #2 pencils -- For doing well on tests
  • Spatula (AKA Pancake turner) -- For scraping myself off the ceiling, and/or anyone else who is up there
  • Litter box scoop (Never seen the inside of a litter box) -- For dealing with my (and other people's) sh*t
  • A book to read while I wait, a notebook to write questions in, plus hopefully my friend to c'mon along and help me with the listening
  • Oh, and a sense of humor and sense of perspective

I went to the website for the medical center my primary care physician mentioned referring me to. I was quite impressed with the department staff. Then I saw they don't list my medical insurance.  Okaaaay... It's time to close a couple of website windows, before I have to get out the scoop. 

Jerzy

Comments

  • stub1969
    stub1969 Member Posts: 978 Member
    I'm glad

    I'm glad you are doing this, Jerzy.  I hope all goes well.  Keep us updated with the results.

    Stub

  • hardo718
    hardo718 Member Posts: 853 Member
    edited September 2016 #3
    I second Stub...

    ....glad you're doing this.  And I see your sense of humor is still intact, that's awesome!  (even if you have to have surgery, they usually can't see your sense of humor, so no worries about losing that during the procedure)

    And believe me, you'll need it afterward. 

    Keep us posted huh?

    Donna~

  • Kangaroorex
    Kangaroorex Member Posts: 47 Member
    edited September 2016 #4
    I second the second

    Good luck with your visit.  I am hoping for the best news.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited September 2016 #5
    Whoosh!

    OK, the CT went down, so I had to get rescheduled for Monday this week. Had a follow-up regarding the radiologist's report with my primary today. Things haven't really changed from the April CT report to this one. My primary's medical group referral coordinator called me today to say they didn't have the referral yet, but are expecting it momentarily, probably first thing in the morning. 

    That "Whoosh"? Somehow I don't think this second cycle is going to take five months. 

    Jerzy

    PS When they put in the second opinion request, someone erroneously approved it with surgeon number #1. Fortunately, my medical group caught it. Also, when the CT #2 approval didn't show up in mailbox, I called surgeon #1's office to find out why. The first two times, they didn't know why. The third time was the charm. The person I spoke with recognized my name. It was still in the FAX tray, having not gone through previously. I'm so glad this is a team effort :-D !

  • stub1969
    stub1969 Member Posts: 978 Member
    Keeping

    Keeping you in my happy thoughts and prayers, Jerzy.

    Stub

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited September 2016 #7
    Whoosh... or not.

    OK, maybe NOT so fast here. My medical group person was arranging for my second opinion appointment, but called tell me I'd need to call them myself because they needed information she didn't have, like the name of my employer. That's odd because they have my employment info which is that I'm not, as in "retired." Many many calls later, during which I discovered (1) Nobody knew this person was I whose name I had that I was supposed call back and (2) The referral was apparently being directed to a surgeon who specializes in melanoma and cutaneous cancers. My response to that was, "Since it's on my kidney, it's probably deeper than that, but what do I know, hahaha." Unlike me, their poor schedulers apparently doesn't get giggly or toss out one liners when things are going crazy. Also, I was probably her 547th caller of the day, so maybe she saves her giggling for Fridays at 5.

    Finally, after many more calls on my part which were producing zip - and mostly because I called up my medical group's scheduler again, assuring her of the ENORMOUS respect I had for her professional abilities (Yeah, I know, it was getting deep - next time I go to the dollar store, I'll get her a scoop) - I turned the calling and scheduling back over to my physician's office to work out. They called back. I'm anticipating a call today from the second opinion RCC specialist's scheduler. 

    Meanwhile, back on the ranch with surgeon #1 seeing him for the follow up with CT #2. He pointed out that the mass hadn't grown, was in the it's-small-enough-we-can-safely-watch-this size, was cyst-shaped rather than UglyTumor-shaped, showed no indications of having spread, and until he saw a NEED to do surgery, preferred to keep it under active surveillance. Also, when I asked him how he thought it was that several people could look at the same thing but see different things. He said that he found that interesting as well and that HE was taking the info to get additional  opinions himself, and would be consulting with several folks, including another radiologist. 

    So, I'm feeling good on all fronts, 1st and 2nd as well as inside and outside.

    I'll keep you posted...

    Jerzy

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    Whoa... whoa... WHOA!

    Right after I clicked on "Submit," the gal from 2nd opinion physician's office called with appointment day and time information... Less than two weeks away. 

    Right after I ended that call, physician #1 phoned to report on the discussions he had with his 2nd opinion people. BTW, this CT was a bit more extensive - one pass without contrast, multiple passes with. While it's not behaving like "typical RCC," they figure it's being borderline enough that it's a good idea to remove it in the next couple of months (November / December). Not urgent, but expedient, I guess you could say. 

    OK, I'll be keeping you all posted -- !

    Jerzy

    BTW, my commute times to all this stuff ranges from 5 minutes to 2 1/2 (or more) hours. 

  • merrywhiterose
    merrywhiterose Member Posts: 2 Member
    edited October 2016 #9
    JerzyGrrl said:

    Whoosh!

    OK, the CT went down, so I had to get rescheduled for Monday this week. Had a follow-up regarding the radiologist's report with my primary today. Things haven't really changed from the April CT report to this one. My primary's medical group referral coordinator called me today to say they didn't have the referral yet, but are expecting it momentarily, probably first thing in the morning. 

    That "Whoosh"? Somehow I don't think this second cycle is going to take five months. 

    Jerzy

    PS When they put in the second opinion request, someone erroneously approved it with surgeon number #1. Fortunately, my medical group caught it. Also, when the CT #2 approval didn't show up in mailbox, I called surgeon #1's office to find out why. The first two times, they didn't know why. The third time was the charm. The person I spoke with recognized my name. It was still in the FAX tray, having not gone through previously. I'm so glad this is a team effort :-D !

    I sometimes wonder if the drs

    I sometimes wonder if the drs. are playing a game with us to see if we can survive the red tape.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited October 2016 #10

    I sometimes wonder if the drs

    I sometimes wonder if the drs. are playing a game with us to see if we can survive the red tape.

    too much credit?

    You would think. However, maybe that's giving the physicians / medical groups / insurance people way too much credit. After all, that would imply it's some sort of organized plot or scheme. 

    Although, after talking with the woman in my primary care physician's office who schedules the referrals for the umpteenth time this week, I told her we probably ought to start learning the names of each other's pets and sending birthday cards. So perhaps it's just a new way to network?

  • stub1969
    stub1969 Member Posts: 978 Member
    edited October 2016 #11
    Wow

    It's good they are moving on this, Jerzy.  Crazy week indeed!

    Stub

  • hardo718
    hardo718 Member Posts: 853 Member
    edited October 2016 #12
    Gosh!!

    It's unfortunately sometimes all about learning how to play the game.  I was lucky, since I worked with a lot of my docs, they didn't pat me on the head and take the wait and see approach, thank God!! 

    That being said, I have had to learn to play along the way here & there in the past, valuable lessons.

    God Bless you Jersey, the sticktoativeness is paying off and soon you should be in recovery mode.  (I still love your attitude, pet names, cards, etc......so stinkin funny)  Good luck with your home renovations too, that can be scarier than the surgery!  haha

    Donna~

  • angie328
    angie328 Member Posts: 10 Member
    JerzyGrrl said:

    Whoa... whoa... WHOA!

    Right after I clicked on "Submit," the gal from 2nd opinion physician's office called with appointment day and time information... Less than two weeks away. 

    Right after I ended that call, physician #1 phoned to report on the discussions he had with his 2nd opinion people. BTW, this CT was a bit more extensive - one pass without contrast, multiple passes with. While it's not behaving like "typical RCC," they figure it's being borderline enough that it's a good idea to remove it in the next couple of months (November / December). Not urgent, but expedient, I guess you could say. 

    OK, I'll be keeping you all posted -- !

    Jerzy

    BTW, my commute times to all this stuff ranges from 5 minutes to 2 1/2 (or more) hours. 

    Hi Jerzy.....I know I just

    Hi Jerzy.....I know I just joined the other day and I don't know everyone's history but you situation sounds pretty close to mine.  I was wondering what the size of your "thing" is and where it is located.  Your humor comes right through the words...cracks me up...such a wonderful attitude....must be the Jerzey in you...I'm formerly a born and raised Jerzey girl myself...now living in NC!

    Hugs and love,

    Angie

  • foxhd
    foxhd Member Posts: 3,181 Member
    Way to go!

    Amazing the perspective one generates about the health care business. And the lesson is.....we are the consumers. Get what you want. Don't settle for first opinions or appointments or procedures. But be right.

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited October 2016 #15
    WHOA, WHOA... GO!

    Tentative pre-op date for November, surgery for December. 

    That is good timing if we end up sticking with it.  I have classes, home remodeling, and family vacation between now and then.

    At least, that's this evening's version. C-R-A-Z-Y week. 

  • JerzyGrrl
    JerzyGrrl Member Posts: 760 Member
    edited October 2016 #16
    hardo718 said:

    Gosh!!

    It's unfortunately sometimes all about learning how to play the game.  I was lucky, since I worked with a lot of my docs, they didn't pat me on the head and take the wait and see approach, thank God!! 

    That being said, I have had to learn to play along the way here & there in the past, valuable lessons.

    God Bless you Jersey, the sticktoativeness is paying off and soon you should be in recovery mode.  (I still love your attitude, pet names, cards, etc......so stinkin funny)  Good luck with your home renovations too, that can be scarier than the surgery!  haha

    Donna~

    I definitely won't do...

    I definitely WON'T do the pat-on-the-head version of anything, Donna. That's the when the part of me that can still make medical staff scatter (in a very relational and professional way, mind you) comes out to play.

    The wait-and-see approach I'll consider if it seems to be somewhere in the neighborhood of better or best practices. If I need to take a bus (or, worse yet, transfer) to the neighborhood, no. 

    I think that the game changer right now is the latest CT. They did some things differently this time, made some extra passes, apparently. Pre-contrast, it was "meh." With contrast, it was (1) practically "meh," (2) a little bit of "sparkle," (3) and then back down to practically "meh." So, the darn thing's a lightening bug?! And not the brightest one in the jar, which is OK, too. 

    Jerzy, pretty much metaphor'd out for the week...