Renal Cell Carcinoma Followup

lbinmsp
lbinmsp Member Posts: 266
edited March 2014 in Kidney Cancer #1
I am a metastatic renal cell cancer survivor (tumor free for 4 years now) - and I read many posts here that ask about followup. I saw my oncologist recently who gave me copies of the NCCN Practice Guidelines in Oncology - Kidney Cancer (National Comprehensive Cancer Network). He told me that these guidelines are the 'gospel' for oncologists (and there are guidelines for every type of cancer). I am attaching the website address here.

http://www.snamid.org/NCCN23.PDF

You may want to review this information with your doctor to ensure you receive the required (and very necessary) followup for your cancer.

Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    RCC followup
    The Article cited by Ibinmsp was interesting reading. It should be reviwed by all RCC patients so they have some idea of the recommended protocal for tests and treatment if necessary following the initial surgery. I am 8 years post surgery with no evidence of further Cancer and it seems that for me at least the diagnostic followup in this article ends at year 7. I just went thru an ultrasound for my year 8 follow up and the doctor has me scheduled for a C_T scan in 10 months for my year 9 follow up. Hopefully he is being overly cautious by a diagnostic test in addition to the guidelines rather than suspecting something. Since my surgoen is a Urolgical Oncologist and is the head of Urology at a nearby hospital I am sure that he uses these guidelines as guidelines and inputs his own discretion in their application. The only thing about my surgeon that I am upset about is the joke he wrote on my discharge summary 2 days after the surgery "that I was discharged without pain".
  • lbinmsp
    lbinmsp Member Posts: 266
    #3
    icemantoo said:

    RCC followup
    The Article cited by Ibinmsp was interesting reading. It should be reviwed by all RCC patients so they have some idea of the recommended protocal for tests and treatment if necessary following the initial surgery. I am 8 years post surgery with no evidence of further Cancer and it seems that for me at least the diagnostic followup in this article ends at year 7. I just went thru an ultrasound for my year 8 follow up and the doctor has me scheduled for a C_T scan in 10 months for my year 9 follow up. Hopefully he is being overly cautious by a diagnostic test in addition to the guidelines rather than suspecting something. Since my surgoen is a Urolgical Oncologist and is the head of Urology at a nearby hospital I am sure that he uses these guidelines as guidelines and inputs his own discretion in their application. The only thing about my surgeon that I am upset about is the joke he wrote on my discharge summary 2 days after the surgery "that I was discharged without pain".

    MUST read - IMO
    I'm going to research some of the other recommendations for other cancers and perhaps the 'survivor' website can post them somewhere that everyone could see. 'Discharged without pain' - FUNNY!
  • corey50
    corey50 Member Posts: 111
    #4
    RCC FOLLOW UP
    dear lbinmsp,
    thank you for the link to this website. when i was first diagnosed i thought i looked everywhere on the web but this is the most comprehensive information i think i've seen. and i can take this to my dr. and say this is the recommended follow up. i've been having blood work and ct scans of chest, abdonmen and pelvis every 6 months, but my urologist wants to switch to chest xray and ultrasound just once a year.
    so happy that you are 4 years cancer free.i know you must celebrate every day.
    i would like to ask you and icemantoo, if he sees this, did you ever consider or did your dr. ever recommend a clinical trial to prevent recurrence.
    dec. will be 2 yrs since my surgery and i don't know i've been thinking is this something i should explore.
    i just finished taking tamoxifen for 5 years for an earlier diagnosis of breast cancer, i don't think there is anything like that yet for rcc. basically a drug that can lower your risk of cancer in the first place and a recurrence.
    well, thanks for the advice and information.
    wishing you continued good health. God Bless
  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #5
    corey50 said:

    RCC FOLLOW UP
    dear lbinmsp,
    thank you for the link to this website. when i was first diagnosed i thought i looked everywhere on the web but this is the most comprehensive information i think i've seen. and i can take this to my dr. and say this is the recommended follow up. i've been having blood work and ct scans of chest, abdonmen and pelvis every 6 months, but my urologist wants to switch to chest xray and ultrasound just once a year.
    so happy that you are 4 years cancer free.i know you must celebrate every day.
    i would like to ask you and icemantoo, if he sees this, did you ever consider or did your dr. ever recommend a clinical trial to prevent recurrence.
    dec. will be 2 yrs since my surgery and i don't know i've been thinking is this something i should explore.
    i just finished taking tamoxifen for 5 years for an earlier diagnosis of breast cancer, i don't think there is anything like that yet for rcc. basically a drug that can lower your risk of cancer in the first place and a recurrence.
    well, thanks for the advice and information.
    wishing you continued good health. God Bless

    RCC Followup
    My Doctor has never mentioned nor have I read anwhere about clincal trials folloing RCC sugery for Stage 1 tumors. I just had my 8 year checkup so I will raise the question on next years visit. His concern at this point is that RCC survivors have a @% chance of RCC in the other Kidney which is higher than the general population and therefor to address any cyst or tumor that could deveope in my trmaining kidney at an extremely early stage.
  • lbinmsp
    lbinmsp Member Posts: 266
    #6
    corey50 said:

    RCC FOLLOW UP
    dear lbinmsp,
    thank you for the link to this website. when i was first diagnosed i thought i looked everywhere on the web but this is the most comprehensive information i think i've seen. and i can take this to my dr. and say this is the recommended follow up. i've been having blood work and ct scans of chest, abdonmen and pelvis every 6 months, but my urologist wants to switch to chest xray and ultrasound just once a year.
    so happy that you are 4 years cancer free.i know you must celebrate every day.
    i would like to ask you and icemantoo, if he sees this, did you ever consider or did your dr. ever recommend a clinical trial to prevent recurrence.
    dec. will be 2 yrs since my surgery and i don't know i've been thinking is this something i should explore.
    i just finished taking tamoxifen for 5 years for an earlier diagnosis of breast cancer, i don't think there is anything like that yet for rcc. basically a drug that can lower your risk of cancer in the first place and a recurrence.
    well, thanks for the advice and information.
    wishing you continued good health. God Bless

    Clinical trials for RCC
    I've now seen a couple of (very good) oncologists and a couple of (very good) urologists (my originals and new docs now that I've moved to a new state) and none have suggested clinical trials. I too had breast cancer but opted for lumpectomy and radiation without tamoxifin (mine was a stage I and the addition of tamoxifin wasn't shown to improve outcome). My docs have all said that if new (RCC) tumors are found, the best 'treatment' continues to be surgical removal (if possible) but, bottom line, close and continued followup is essential. Take care - and God bless you as well.
  • jisrael
    jisrael Member Posts: 5
    #7
    Just reading that a mestatic
    Just reading that a mestatic renal cancer survivor is writing after 4 years is hope for me. Thank you!!
  • blackbelt
    blackbelt Member Posts: 32
    #8
    BE VERY CAREFUL GETTING ADVISE FROM SOMEONE WHO IS NOT A DOCTOR ON CSN!
    YES VERY IMPORTANT YOU ASK YOUR DOCTOR ABOUT RCC FOLLOW UP TREATMENT, yes NCCN Practice Guidelines in Oncology - Kidney Cancer (National Comprehensive Cancer Network) will help.
    I had a open partial nephrectomy on 5/17/2006 at the age of 51, renal cell carcinoma, clear cell type, Fuhrman grade 2, stage I, 1.2 cm right renal mass, with complications, doctors nicked right lung and nicked lower abdominal peritoneum area, this kind of surgery was high risk high return because of location of kidney tumor! Even though my 1.2 cm right renal mass was small I still lost most of my right kidney.

    Suggest you have yearly follow-up CT scans for the first five years, VA discovered small bowl obstruction on my three-year follow-up CT scan w/contrast, I had a open laparotomy(major abdominal surgery) on 12/01/2009 for small bowel obstruction/possible colon cancer?
    Just discovered abnormality measuring 3.0 by 1.4cm in size On left lung on my four year follow-up abdominal/lung CT scan w/contrast. My VA (Veteran Administration doctor) is just watching the left lung abnormality, if it grows they just go in and take it out. Suggest having lab/blood work every 3-6 months! YOUR in charge of your health, ask your doctor if having a CT scan with contrast will hurt your remaining kidney, my primary doctor wanted to just order a a chest xray and routine ultrasound taking the place of the ct scan w/contrast on my four year follow-up because he didn't understand or know NCCN Practice Guidelines in Oncology - Kidney Cancer, so I did my research and requested to see my urologist and he ordered by four year follow-up with a CAT scan w/contrast and found my abnormality measuring 3.0 by 1.4cm in size On left lung. Again YOUR in charge of your health, do your research, ask your doctor the right questions, feel free to contact me with any questions.
    GOOD LUCK

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