a bit scared

suki731
suki731 Member Posts: 13
in Kidney Cancer #1
hi everyone

Im a 49 yr old F and I was dx with a 1.5cm r renal mass in 2009. I had a RF ablation done and for 2 years my scans were good. My pathology from the surgery back in 2009 states benign..but the doctor I am seeing now says he feels they didnt get a correct read on that. I had a routine follow up scan on 6-20-12 it is showing a rim enhancement and HU of 32. After the CT on 6-20-12, they did an MRI on 7-6-12. The urological surgeon I am seeing states that he cannot determine whether or not to do surgery as there are no solid components showing in the enhanced part of the tumor and because I had a RF ablation it is difficult to determine everything they need to make concrete decisions. Dr states the area that lit up has Hemosperin in it??..I dont know what that is?. Also advising me to wait until November to get another MRI scan. He did say he would do the sx on me but made it sound very risky stating I may need a blood transfusion etc.... Surgery or not?..wait or not?..wait for what, mestastical disease?..I do get flank pain , MRI shows bone islands in my pelvvis and I get terrible nueropathy sypmtoms bilateral legs, no diabetes and I only weigh 118 lbs and cant walk somedays.. I just dont feel right, I know my own body and my instinct is asking me to reach out..No blood work has been ordered, no chest x-ray..no bone scans..I dont know what to do?...I have medicaid and i dont feel I have access to the right help...any advise??

I look forward to hearing from you
suki

Comments

  • Texas_wedge
    Texas_wedge Member Posts: 2,798
    #2
    Expert advice
    Suki, I have no hesitation whatever in recommending very strongly that you put this question to Susan Poteat, a medical physicist, on the ACOR email list called KIDNEY-ONC. She is an expert unlike anyone here (and I say that with all due deference to my many excellent friends here). Join KIDNEY-ONC asap and seek her help.
  • suki731
    suki731 Member Posts: 13
    #3
    Texas_wedge said:

    Expert advice
    Suki, I have no hesitation whatever in recommending very strongly that you put this question to Susan Poteat, a medical physicist, on the ACOR email list called KIDNEY-ONC. She is an expert unlike anyone here (and I say that with all due deference to my many excellent friends here). Join KIDNEY-ONC asap and seek her help.

    Expert Advise
    Thank you Texas!...

    I will certainly do that!...do I just google this information?..I am novice at the links and information resources. ACOR?...I guess I sound a bit silly but just reaching out for the first time...:)
  • Limelife50
    Limelife50 Member Posts: 476
    #4
    suki731 said:

    Expert Advise
    Thank you Texas!...

    I will certainly do that!...do I just google this information?..I am novice at the links and information resources. ACOR?...I guess I sound a bit silly but just reaching out for the first time...:)

    Hi Suki
    I agree with Texas i did spend some time on Kidney-Onc and the person Texas is talking about Susan Poteat is very knowledgable,i think alot of us here are scared at times even to the point it is hard at times for it not to get to us.I would be interested in you maybe updating us on your well being,good luck Suki
  • suki731
    suki731 Member Posts: 13
    #5
    Limelife50 said:

    Hi Suki
    I agree with Texas i did spend some time on Kidney-Onc and the person Texas is talking about Susan Poteat is very knowledgable,i think alot of us here are scared at times even to the point it is hard at times for it not to get to us.I would be interested in you maybe updating us on your well being,good luck Suki

    Thank you for the info
    I joined the mailing list yesterday. I will try to contact Susan today. Thank you for the information..it makes me feel good to know there are friends out there to talk with about all of this....:)

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