Got myself an Oncologist appointment

nsb748
nsb748 Member Posts: 89
in Kidney Cancer #1

For those of you that don't remember, I had an open partial at the start of March for a 2.2cm tumor.  The surgery went well, but I had some doubts about the opinions on follow up scans that my surgeon has.  

At the recommendation of several people on this board, I made an appointment at the Cleveland Clinic with an oncologist specializing in rcc.  Apparently this guy is one of the top experts on rcc oncology worldwide. I have to say, just scheduling this appointment instantly made me feel a little more relaxed about the future.  

Now I have to get all of my records from various locations consolidated and sent to this new guy since I found him on my own.  What a pain, but hopefully it will be worth it

thanks again for the advice everyone

 

Comments

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    #2
    Good for you! Sounds like you

    Good for you! Sounds like you chose a great doctor!

    Before you go to all that trouble, ASK them if they may have access to your records via Physicians Portal.

    Of if they share the same computer software, they may already be linked. Not sure where you had you

    first scans/surgery/test results.

    Worth a try..

    Good luck!

    Jan

  • NewDay
    NewDay Member Posts: 272
    #3
    Jan4you said:

    Good for you! Sounds like you

    Good for you! Sounds like you chose a great doctor!

    Before you go to all that trouble, ASK them if they may have access to your records via Physicians Portal.

    Of if they share the same computer software, they may already be linked. Not sure where you had you

    first scans/surgery/test results.

    Worth a try..

    Good luck!

    Jan

    RCC Specialist

    I'm glad to hear you are going to see an RCC specialist.  I know it put my mind at ease after I saw Dr. Tannir at MD Anderson.  Although I can't continue to fly to Houston to see him, I know that I am now in the care of a local Oncologist that was highly recommended by him and that can consult with him if needed.  I know it is a pain to pull all of your records together, but it will be worth it in the long run.

    Good Luck

    Kathy

  • sblairc
    sblairc Member Posts: 585 Member
    #4
    Wish husband did this 6 months ago!

    Good for you, I wish my husband did this. He never had a CT of the chest, just an xray. I have learned so much about fighting this disease and patient advocacy from this board.

  • nsb748
    nsb748 Member Posts: 89
    #5
    sblairc said:

    Wish husband did this 6 months ago!

    Good for you, I wish my husband did this. He never had a CT of the chest, just an xray. I have learned so much about fighting this disease and patient advocacy from this board.

    I am already learning new

    I am already learning new things just from gathering all of my records

    i saw the radiologist report from my ct and MRI scans that said I also have a cyst in my liver and a spleen that is at the upper end of the normal range.  Funny how no doctors told me about these in any of my appointments.  Maybe not a big deal, but I would have liked to know 

  • sblairc
    sblairc Member Posts: 585 Member
    #6
    nsb748 said:

    I am already learning new

    I am already learning new things just from gathering all of my records

    i saw the radiologist report from my ct and MRI scans that said I also have a cyst in my liver and a spleen that is at the upper end of the normal range.  Funny how no doctors told me about these in any of my appointments.  Maybe not a big deal, but I would have liked to know 

    We got copies printed out and urologist showed us CT

    One of the many things that I loved about my husband's urologist was that he always handed us copies of reports (CT, Pathology) when explaining results. We never had to ask either. My husband was diagnosed in the ER on a Friday morning and that evening we met him. He logged onto the computer and reviewed it extensively with us, explaining everything very well. 

     

  • twinthings
    twinthings Member Posts: 409
    #7
    nsb748 said:

    I am already learning new

    I am already learning new things just from gathering all of my records

    i saw the radiologist report from my ct and MRI scans that said I also have a cyst in my liver and a spleen that is at the upper end of the normal range.  Funny how no doctors told me about these in any of my appointments.  Maybe not a big deal, but I would have liked to know 

    I'm happy to hear you are

    I'm happy to hear you are seeking the care of an oncologist.  I found my oncologist on my own, without the referral of my urologist, yet my oncologist was still able to access all of my records without any involvement from me.  You should have signed HIPAA papers when you established care with your urologist/surgeon, giving them permission to share your records with other doctors.

    My story began with medical records.  Following a brief overnight stay in the hospital, last May, while working out of state, I requested a copy of my medical records to take back home, to my doctor.  Because I presented with symptoms of pancreatitis, the ER doctor ordered a CT of my belly.  Pancreatitis was ruled out, turns out it was the stomach flu and I was re-hydrated with 6 bags of fluid and sent home. 

    Later that week I returned to the hospital to pick up my records and BAM!!  RENAL CELL CARCINOMA, in bold print.  If I could see the words so clearly, surely my doctor could too.  So, I always get my records...without fail.

    Since then, my first post-op CT indicated I have a 1.5cm splenule in my tummy as well as a "larger than normal mediastinal lymph node", in my lungs.  My doctor did not tell me about these things.  I think he omits info that he knows I will worry about.  Info that worry won't change so why tell me?!  Once I got a copy of my report, I made an appointment to see him to discuss what should have been discussed the first time.  With my prompting, he agreed a 3 month follow-up scan was warranted, versus waiting 6 months.  I recently had that 3 month f/u scan.  It showed my already larger than normal lymph node grew from 0.9cm to 1.3cm...in 3 months!  My doctor suggested we re-scan in another 3 months.  I'm good with that.  Like you said, these things might not be a big deal but I'd rather know about them than turn a blind eye and let something sneak up and bite me.

    All in all, I can't complain.  There are plenty of people that would love a report as good as mine.  I am blessed, no doubt! 

    Good luck with your new doctor!  Keep us posted.

    Sindy

     

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