Bone pain- advice sought

hope_123
hope_123 Member Posts: 22 Member
edited May 2023 in Kidney Cancer #1

Hi there, I had a 1.3 cm chromophobe (eiosinophilic variant) tumor removed by robotic partial neph in early 2021. No sarcomatoid features or lymph node involvement. My scans have been NED and this year my doctor said that I didn't need to do anymore scans or followup because he said it definitely wasn't coming back. Do you think this level of followup is adequate? Recently, I have been having hip joint pain at night that goes away with movement and also very low level pain in the upper spine. Is this just turning age 50 or do I have reason to be suspicious? I made an appointment to speak with a second doctor soon. What does everyone thing about my doctor letting me off of surveillance just 2 years out? My doctor used to head his department at the Cleveland Clinic. I've only had MRI and ultrasound followup, x-ray of lungs, blood work. I never had a PET or bone scan, is this OK?

Comments

  • eug91
    eug91 Member Posts: 471 Member
    #2

    Re: your scans, talk to your doctor about it. In my case it's scans for five years, but I've never had PET or bone scans here. It's not entirely unreasonable that with your small tumor they might feel it's safe to stop scans after two years. But it's YOUR health, so if you're uncomfortable, bring it up to your doctor. Maybe at least they'll approve you for ultrasound or x-ray follow-ups for your peace of mind.

    As for the pain you're describing, it's probably just aches and pains that come with getting old, but it could be anything. I would definitely mention it to your doctor.

    And in the words of FoxHD, we no longer have "mysterious" aches and pains. All aches and pains are only reminders to take care of ourselves.

  • Bay Area Guy
    Bay Area Guy Member Posts: 619 Member
    #3

    I had a slightly larger size, also chromophobe. I had scans for four years, then requested and was approved for a fifth year. As I have had intestinal issues in the past, as well as a family history of aorta problems, I’ve already asked my primary if I can get an abdominal ultrasound every couple of years, just to be safe. If insurance denies it, my plan is to either do a pay-as-you-go at home or in either Thailand or Singapore as we travel to both locations a lot.

    Agree with eug91 that a talk with your doc is in order. It’s likely your pain is aging. God knows, at 67 years of age, I get all kinds of aches and pains now that never came around when I was a young whippersnapper (do people still use that term.). But discussing with your doc can set your mind at ease and that’s a valuable consideration.

  • Lax22mom
    Lax22mom Member Posts: 2 Member
    #4

    I had a 1.2 mass removed in 2013. I had a CT scan 6 months after surgery. Since then I have an ultrasound of my kidneys and X-ray of my lungs one a year. My insurance has paid so far. My doctor wanted to quit scans after 5 years. I wasn’t comfortable with that at all.

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