I'm absolutely beside myself!!

Sslee723
Sslee723 Member Posts: 54
in Kidney Cancer #1

Had my oncologist appointment on Monday and have been having pain on my left side ( right nephrectomy was done ).  Doctor orders a catscan w/o contrast , I had to drink 2 bottles of fruity nastiness.  Anyway on my way home doctor calls me says everything ok, stop votrient for a week and resume only taking 600 mg in a week.  So this morning my catscan posts on the patient portal and it was anything but ok!  New mets, old ones growing, in pelvic area now which is new and in nephrectomy base, I geuss where they took kidney out. I called dr first thing in morning and nurse says " sometimes radiologists don't read them right.  What ..... it's their job, I said what was dr reading.  She said she would get him message and then she called me back and said he wants to see me Monday morning.  Is this for real, like I said I'm beside myself.  Please someone , anyone , you guys in this forum are awesome, I can not believe this!!!!!

Comments

  • Steve.Adam
    Steve.Adam Member Posts: 463 Member
    #2
    Hi SsLee

    I don't know anything about mets or votrient.  I just want you to know that I am thinking of you and I hope they find a treatment that works for you.

    Steve.

  • lobbyist0724
    lobbyist0724 Member Posts: 515 Member
    edited April 2017 #3
    Don't worry too much

    Don't worry too much until you meet with your doctor. I still remember that on my first post surgery UltraSound report, the radiologist mentioned some mass on the tumor bed and that my original tumor before the surgery was like 8cm instead of 3cm that I knew.  Later my Urologist explained, that mass is a surgical pug that was used to stop the bleeding and will gradually absorb by the body. The 8cm... info was just a MISTAKE after all.

    Best wishes to you, take care!

    Carmen

  • Sslee723
    Sslee723 Member Posts: 54
    #4
    3rd scan

    This is the third scan post surgery and it gets worse every time.

  • Deanie0916
    Deanie0916 Member Posts: 626 Member
    #5
    Sslee

    Hi, I am praying for you...I hope it turns out well. 

  • twinthings
    twinthings Member Posts: 409
    #6
    Sslee723 said:

    3rd scan

    This is the third scan post surgery and it gets worse every time.

    You've inspired me

    I'm so sorry you're going through this but wanted to tell you...I'm almost 2 years behind schedule on my post-neph scans, thanks to my sorry insurance.  But after reading what you're going through, I'm making myself an appointment.  I will be 4 years post surgery on May 28th and it's been my understanding I should be scanned till I reach the 5 year mark. 

    I hope you get answers soon.  I know from experience that waiting is often the hardest part.  I will lift you in prayer!

    Sindy

  • todd121
    todd121 Member Posts: 1,448 Member
    edited April 2017 #7
    Other Opinions

    I strongly suggest a second, even a third opinion if you are unhappy with your doctor. I've done 2-3 opinions on a few occasions. Shop around.

    For me, if I get 2 opinions and they differ, then I go for a third. You want the best opinions you can get, of course. Look for medical oncologists with RCC experience. Ones that do research in RCC and/or see many RCC patients a week are the best choice if you can do it. If it's difficult, I'd do my best to at least get one opinion with an expert in RCC, even if you have to travel. Most HMO's allow you to go outside the HMO for special cancers like this and get an opinion from an expert. You might have to push for it.

    Hope this helps. I know when you're in a hurry, stressed, sick, etc., it's damn annoying to have to go find other doctors. I was glad I did in each case. I either got peace of mind, and/or found out more information so that I got peace of mind. Peace of mind that you're getting the best care you can get is invaluable.

    And don't worry about your doctor's attitude about you getting another opinion. I've been told by several good docs, that a good doctor won't mind at all that you're getting another opinion. It's the ones that mind you want to watch out for/maybe even stay away from.

    Best wishes,

    Todd

  • Abunai
    Abunai Member Posts: 173 Member
    #8
    Fruity Nastiness

    I think you have nailed the description of the drinkable contrast.

    I can see where the disconnect between what your Doctor told you and what you read in your CT scan report would cause a lot of anxiety. Especially since you have to wait over the weekend to talk to the Doc. My hope for you is that your doctor has reasons for optimism that aren't readily apparent in the CT scan report.

    Todd is correct, however. If you have any doubts about what your Doc tells you, get a second opinion. Some insurance plans have a program in which you can request a group of specialists look at your medical case and determine whether or not they believe that your doctor is correctly interpreting and handling your case. With Blue Cross Blue Shield, that program is called "Best Doctors". If you're interested in something like that, you should ask your insurer if they provide a similar program.

    I'd try to focus on more enjoyable thoughts over the weekend and not stress about it. Stressing won't change what you will eventually find out on Monday.

    Best.

     

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #9
    Oh Sslee, I am so sorry for

    Oh Sslee, I am so sorry for this anguish. Geezlouize! I can appreciate the confusion and how upsetting this has been for you.

    When you see your doctor Monday, ASK him why he went to "no problem" to he wants to see you?

    And yes there can be difference between Radiologists report and the specialist. I got it twice by 2 different radiologists when first discovering my tumor. I had to trust my specialist.

    Yes, listen to the others here, like Todd. It is okay, always to see another's opinion.

    Let us know what you learn and know we're here for you ALL THE WAY!!

    Hugs, Jan

  • Sslee723
    Sslee723 Member Posts: 54
    #10
    Thank you

    Thank you all so much for all your words of wisdom, finding this forum has been a great find.  As for having a great weekend, unfortunately I probably will not sleep till Monday.  Anxiety is definitely a problem for me.  

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    #11
    I am so sorry to hear that

    I am so sorry to hear that you are going through this. How was your appointment? Hoping for the best.

    Big hugs

    Jojo

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