Indiana University Cancer Center

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DAC677
DAC677 Member Posts: 59
in Kidney Cancer #1

Has anyone ever heard of or had any interaction with IU Health Melvin & Bren Simon Cancer Center?

I have an appoitnment there in 2 weeks because I wanted a second opinion on my records and case and was told these guys are some of the best in the area. I expect they will be fine, just curious if anyone else had any interaction with them

 

http://iuhealth.org/simon-cancer-center/kidney-cancer/

 

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  • sandy23
    sandy23 Member Posts: 143 Member
    edited February 2017 #2
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    I don't have any information

    I don't have any information but live about an hour away from there.  If you wouldn't mind, could you update me after your appointment?

  • DAC677
    DAC677 Member Posts: 59
    #3
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    Thanks

    I defintely will. I do not like my Oncologist here in Louisville, (had another annoying encounter with him today) and the IU folks came highly reccomended. I felt like it was a great chance to get a second opinion and maybe a replacement Oncologist. I havent told my new soon to be replaced Oncologist im leaving yet because he ordered a whole battery of CT Scans, MRI, bone scans, X-ray and bloodwork on friday. His office called today to say they wanted another look or CT scan of the chest then later said nevermind. He wouldnt release my tests or tell me whats in them till next week so i contacted medical records to open them up for me and had a doc friend look unofficially and i think the scans are clean (I want to celebrate but cant yet). 

    In any event I'll get to review everything with the experts at IU next week on 2/23

  • DAC677
    DAC677 Member Posts: 59
    edited February 2017 #4
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    Bump

    Tomorrow I go meet my new ONC here locally in the AM and then drive up to the IU renal cell cancer center in the afternoon.

    I expect and hope for great news and a care plan that keeps me in the clear for years to come. I was told the IU center was one of the best in the country but this post didnt generate a lot of responses. Ill let you all know my impressions tomorrow night or Friday.

    If anyone else has experience with IU or advice about things to ask or do when going to a research center for a second opinion im all ears.

  • todd121
    todd121 Member Posts: 1,448 Member
    #5
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    Finding a Specialist

    This particular doctor has had a lot of publications related to kidney cancer research. He's over where you're going. You don't mention who you are seeing.

    http://medicine.iupui.edu/faculty-profile/TLOGAN/Logan-Theodore/

    The way I found my specialists was I went to the national cancer institute's website, then found clinical trials on renal cell carcinoma. They list contact information by location in your area. You can be pretty sure that if they have a coordinator for a study for a renal cell carcinoma trial, there is research going on in that department. I found all the oncologists/oncologist groups in my area that specialize in kidney cancer this way. Sometimes Google isn't great at finding them. If you can get your hands on journals like the Kidney Cancer Journal (or others) or search them online, if you can find doctors that have written papers on kidney cancer, you're pretty sure to find a specialist that way too.

    Another way, is the Kidney Cancer Association hosts seminars in different places throughout the country. They invite speakers in to speak on the topics related to kidney cancer. If you can get your hands on one of the meeting agendas, you will see a list of medical oncologists very interested in kidney cancer speaking at those meetings. Look for the medical oncologists. They are the ones that follow and treat metastatic disease and coordinate with other specialists to do radiation or surgery.

    Hope you have a good experience. If you still aren't happy, come back and post again. I'm sure there's somebody that knows your area. You can also try the smart patients website for referrals in your area.

    Best wishes to you,

    Todd

     

  • Zenmomma56
    Zenmomma56 Member Posts: 8
    edited March 2017 #6
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    4 months post op. Partial right nephrectomy - robotic surgery

    I'm nearly 4 months post OP, though not sleeping as much as I was and I'm not on any meds but 50,000 IU of Vitamin D . I sleep a lot and daily naps are not optional.  It frustrates me sometimes and other days I embrace it.   I still feel so bloated, my belly from my chest down is distended, I look like a pregnant grandma.   But it's uncomfortable.  My surgical scars are red and itchy. My back hurts around my right kidney area but it's vague and I feel like I am whining.   I just need to know how long, or if  I'm just not tolerating my recovery , at least  psychologically well. My clothes don't fit, I do better with education. if I know what's what , I do better. I go back to urologist in May, my insurance would only approve mg CT scan every 6 months. I would appreciate any feedback professionally and from personal experience. 

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited March 2017 #7
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    Welcome

    Zenmomma,

     

    Welcome to the club which no one in their right mind would volunteer to join. So we can welcome you with information pertinent to you, fill in your bio and start a new forum post rather than respond to a different post about the Indiana University Cancer Center.

     

    Icemantoo

  • Zenmomma56
    Zenmomma56 Member Posts: 8
    #8
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    icemantoo said:

    Welcome

    Zenmomma,

     

    Welcome to the club which no one in their right mind would volunteer to join. So we can welcome you with information pertinent to you, fill in your bio and start a new forum post rather than respond to a different post about the Indiana University Cancer Center.

     

    Icemantoo

    Thank you

    I have days I just don't feel so good but can't explain it. I have little energy but used to be an active person. I guess I should mention I had a complex comprehensive rotator cuff repair in August, just months prior to my nephrectomy.   I just finished my physical therapy for my shoulder today.  Yay.. in my mind I make plans and  my body is so not on board with thst .....

  • Zenmomma56
    Zenmomma56 Member Posts: 8
    edited March 2017 #9
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    Curious

    So, I was blessed and my cancer was accidently found early.  So, I had a urologist for my surgery to remove my tumor and kidney. I guess I would have seen an oncologist if I needed further treatment .

  • Sk7anne
    Sk7anne Member Posts: 4
    #10
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    Hello - brand new here.  Any

    Hello - brand new here.  Any feedback on Indiana University?  I have a 1.1 cm solid lesion on my right kidney and have an appointment with an urologist at I U Simon Cancer Center on Monday afternoon.  I will be happy to give feedback after my appointment.  

     

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #11
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    Welcome

    Sk7anne,

    Almost as good as no solid mass at all, having a little bitty one. You will be fine.

     

    Icemantoo

  • DAC677
    DAC677 Member Posts: 59
    edited April 2017 #12
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    IUPUI

    I know I took a long hiatus from the board here. i feel like i needed a break from living the cancer life and the docs said to just relax and live a normal life for a few months. Then my account was locked up so it seemed a sign.

    I did see a Dr Roberto Pili at IUPUI and was totally impressed with his knolwedge and beside manner and approach. I walked away feeling like I had the best in the world, the kind of docotr a billionaire would request if he had kidney cancer.

    https://medicine.iu.edu/faculty/5184/pili-roberto/

    I still do all my scans at NCI in my home town and see a Dr Hadley here whom I am very happy with but knowing i have been accpeted into the IUPUI program and have Dr Pili just a call away has done wonders to ease my mind. I think sometimes the biggest struggle is wondering if our course of treatement is best for me. could my doc be making a mistake or just not be privy to the latest research. By seeing my local and very talented oncologist and having access to Dr Pili and IUPUI i feel im in great hands and that I have the best care in the world.

    (If i die someone please erase this post!....LOL)

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