Got my second opinion

Steph85
Steph85 Member Posts: 166 Member
in Kidney Cancer #1

My urolgic oncologist is wonderful, but I decided to get a second opinion on my plan of care. My UO wanted to do a 6 month scan, a 2 year scan and then a 5 year scan. Then he says "That's it! Your all done!" like I'm magically cured. I decided to see a Medical Oncologist who specializes in RCC. Being as young as I am it just felt like it won't just be a "bump in the road" like my UO said.  I'm so glad I met with the oncologist. He listened to every complaint and concern I had. He agreed I should be getting the standard yearly scan for 5 years. Talked about his experience with what happens after 5 years. What I would like to do regarding scans. Also going to do genetic testing for Von Hippel-Lindau syndrome and a bone scan. I've had a pain in my spine for 6 months and my chiropracter, physical therapist or NP shrugged it off. 

Long story short, I'm being pro active about my health and not going to take anything for granted. I'm getting healthier and ready for what ever comes my way. I will keep you all posted on my results. I feel really good about this.

Thanks for listening!

 

Stephanie

Comments

  • Deanie0916
    Deanie0916 Member Posts: 628 Member
    #2
    Good for you Steph

    I am sure that brings a lot of comfort and peace. Keep being proactive...positive vibes being sent your way!

  • todd121
    todd121 Member Posts: 1,448 Member
    #3
    Follow Up Scans

    5 years is the magic number in some cancers, but it has little/nothing to do with kidney cancer. There is no 5 year horizon that's been proven in relation to kidney cancer. I've met a few people (and I don't know many in my day-to-day life or from support groups) that had kidney cancer and it returned 10 even 20 years later.

    You are in low risk group. However, if it comes back, you want to catch it as early as possible to increase the chances of it being operable. Many RCC oncologists that really know kidney cancer think the follow-up guidelines recommended by NIH are too lax and that they are missing recurrences until it's not operable.

    I hope you can get chest/abdomen and pelvic CT's with contrast if possible and try and convince them to keep following you after 5 years. Annually probably is ok after 5 years. The radiation from an annual scan is not at all bad.

    By the way, what did this medical oncologist say about scanning after 5 years? Hopefully he/she supports scanning after 5 years even.

    I'm glad you're getting the extra scans. For me, the followup scans is what caught my second tumor and that was 3 years ago.

    Todd

  • Steph85
    Steph85 Member Posts: 166 Member
    #4
    todd121 said:

    Follow Up Scans

    5 years is the magic number in some cancers, but it has little/nothing to do with kidney cancer. There is no 5 year horizon that's been proven in relation to kidney cancer. I've met a few people (and I don't know many in my day-to-day life or from support groups) that had kidney cancer and it returned 10 even 20 years later.

    You are in low risk group. However, if it comes back, you want to catch it as early as possible to increase the chances of it being operable. Many RCC oncologists that really know kidney cancer think the follow-up guidelines recommended by NIH are too lax and that they are missing recurrences until it's not operable.

    I hope you can get chest/abdomen and pelvic CT's with contrast if possible and try and convince them to keep following you after 5 years. Annually probably is ok after 5 years. The radiation from an annual scan is not at all bad.

    By the way, what did this medical oncologist say about scanning after 5 years? Hopefully he/she supports scanning after 5 years even.

    I'm glad you're getting the extra scans. For me, the followup scans is what caught my second tumor and that was 3 years ago.

    Todd

    Hi Todd,

    The MO agreed scans should be yearly or every 2 years.  He's had patientswith recurrence right at 5 yrs and 10 days after 5 year mark. Its important to still do scans. 

     

    -steph

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