Monitoring question

Jojo61
Jojo61 Member Posts: 1,309 Member

I am curious to compare with you all how you are all being monitored after your nephrectomy. My kidney was removed last December. It was stage 3, grade 2. I have had one scan done and have another coming up October 10th. In the first scan they noticed a lesion on the liver and because of that, are going to do a CT scan instead of an ultrasound. Here in Ontario, Canada, apparently that is standard procedure: First 3 months, one CT scan....from then on every 6 months, ultrasound. I read what some of you are having done, and I want to raise this question to my doctor when I see him. They want me to do some blood work, but that is all. I have never had a bone scan, no chest xray since before the surgery, and no other preventative measures.

I have another question....are there any of you stage 3 people out there who have NOT had recurrence? Sorry if this is an insensitive question...but I am dwelling on this lately.

Thanks for your input!

Hugs

Jojo

 

Comments

  • APny
    APny Member Posts: 1,995 Member
    Wishing you the very best,

    Wishing you the very best, Jojo! I had a partial nephrectomy in March and follow up includes a chest x-ray every six months along with kidney ultrasound, nuclear kidney function scan, and blood work. I was stage 1 grade 3.

  • Phredswife
    Phredswife Member Posts: 162
    Hi JoJo. My hubby had a t4

    Hi JoJo. My hubby had a t4 tumour that had spread to his adrenal gland removed by surgery in Feb 2014 and he is so far still NvEd. Next scan in January. He still gets abdominal pain and doesn't feel that great but is back to working full time again now. Hope this encourages you. No one has ever told us what stage it was but at least stage 3 from what I read on here.

  • GSRon
    GSRon Member Posts: 1,303 Member
    Ultrasound won''t find tiny

    Ultrasound won''t find tiny Mets.  And where would they start to look anyway..?  Sadly as you know you are at risk for Mets..  The normal here in the States is a CT Scan (with Contrast if possible) of the chest, abdomen, and pelvis.  The lungs are THE most common place for Mets to show up.  Based on Pathology and age, scans should be at either 3, 4, or 6 months initially.  My third scan at 9 months from surgery was when the tiny lung Mets showed up.  Others have had them show up sooner, and some many years later.  Hopefully you never have any.. but finding them early is key.. as you well know..

    Good Luck..!

    Ron

  • Srashedb
    Srashedb Member Posts: 482 Member
    Scans

    my husband was stage 4, grade 2 when diagnosed and was scanned as Ron describes every 3 months. After the last scan, he is on the 4-month schedul.

    he has had bone scans regularly even before any treatment; after the diagnosi, he was tested thoroughly since that determind his treatment. He has also had MRIs which focuses on the organs as well as x-Rays which monitors the laminectomy and arthritis.

    he is stage 4, however, so your schedule may not be as close monitor but at stage 3, you should have the scan.

    Sarah

  • tyjsbtn
    tyjsbtn Member Posts: 50
    GSRon said:

    Ultrasound won''t find tiny

    Ultrasound won''t find tiny Mets.  And where would they start to look anyway..?  Sadly as you know you are at risk for Mets..  The normal here in the States is a CT Scan (with Contrast if possible) of the chest, abdomen, and pelvis.  The lungs are THE most common place for Mets to show up.  Based on Pathology and age, scans should be at either 3, 4, or 6 months initially.  My third scan at 9 months from surgery was when the tiny lung Mets showed up.  Others have had them show up sooner, and some many years later.  Hopefully you never have any.. but finding them early is key.. as you well know..

    Good Luck..!

    Ron

    Sorry if this is off topic

    Sorry if this is off topic but what are Mets?  I am 6 weeks post op and don't have my 1st scan until December.

     

    Thank you

  • Srashedb
    Srashedb Member Posts: 482 Member
    tyjsbtn said:

    Sorry if this is off topic

    Sorry if this is off topic but what are Mets?  I am 6 weeks post op and don't have my 1st scan until December.

     

    Thank you

    Mets

    shortened term for metastasis 

    Sarah

  • jacket69
    jacket69 Member Posts: 6
    monitoring

    I had my left kidney out in March.  Stage 4 with just three small mets on my lung. I had body, brain and bone scan in April.   I started Sutent in May and had a chest, pelvic  scan in July.  Two weeks ago I had another body scan and nuclear bone scan.  I see my Oncologist tomorrow but my primary physician read the scan and said the mets had decreased in size and my bones are clear.  I asked the radiologist if I was having too many scans and he said the Dr. must be wanting to follow me very closely but that each scan does subject us to a certain amount of radiation.  I hope this information helps.  

  • danbren2
    danbren2 Member Posts: 311
    Every 3 Months

    JoJo,

         I was a stage 3 until my surgery and then was changed to a stage 4.  After removal of my right kidney I was getting pet scans every 3 months.  A year and 1/2 later when I had my lower right lung removed, my schedule was changed to CT scans with and without contrast every 3 months, which consists of chest, stomach and pelvic area. Last year when I had the tumor removed from my head, they started every 3 months MRI of the brain along with the CT scans.  I have only had surgeries and cyber knife treatment on the brain after surgery.  I have never been put on any other treatments for the cancer.

       I think I would ask about CT scans Jo, and find out why they have not been recommended for you.  Hoping everything goes really well for you!

                                                    Prayers of good health,

                                                    Brenda

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    danbren2 said:

    Every 3 Months

    JoJo,

         I was a stage 3 until my surgery and then was changed to a stage 4.  After removal of my right kidney I was getting pet scans every 3 months.  A year and 1/2 later when I had my lower right lung removed, my schedule was changed to CT scans with and without contrast every 3 months, which consists of chest, stomach and pelvic area. Last year when I had the tumor removed from my head, they started every 3 months MRI of the brain along with the CT scans.  I have only had surgeries and cyber knife treatment on the brain after surgery.  I have never been put on any other treatments for the cancer.

       I think I would ask about CT scans Jo, and find out why they have not been recommended for you.  Hoping everything goes really well for you!

                                                    Prayers of good health,

                                                    Brenda

    And Hi to Blondie...

    JoJo-

    And I think we have to look at what is standard procedure in Canada as to what is done south of the border; and also what is cutting edge in a large facility in the US as opposed to treatment by an oncologist who doesn't have the latest technology or information.  You have been following this board long enough to realize that we all have been on slightly different roller coasters.

    Because mine was found on US, and confirmed with a full contrast CT, and then a bone scan the next day, the doctors knew where to look and where not to (none in the bones).

    My oncologist didtn' begin to think about a cut back on regular CT's until 5 years after the first "find" and surgery.  Then I surprised all of us with enlarged nodes in my thyroid and that extended the CT's for another 18 months. During the past 2 years (years 7 and 8) I alternate a CT with an US at 6 month intervals.  The big BUT, is that upon Dx and prior to any surgery, they knew it was Stage 4.

    The biggie for is to ask your questions at the next appointment and have the Dr. justify the schedule and type of tests you are being given.  Make him/her explain it until you understand.  And Good Luck.

    I know, I need a new pix.  Can't find the one I want to use until I sort thru a pile of photos.

    Donna

  • Skagway Jack
    Skagway Jack Member Posts: 224 Member
    Hodge Podge

     

    JoJo,  CT with contrast is the preferred here....contrast and the barium shake.

    I am only stage I grade 3, but my schedule post op was CT with contrast at 6 months and again at one year.  What ended up happening was a chest CT with contrast at 3 months (this due to ONC request). Then the 6 month CT with contrast on abdomen scan showed a spot on the remaining kidney that had not been remarked about before.  This caused my Onc to request another scan at the 9 mth mark.  Which brings me to this Thursday and I get my one year CT of Chest and Abdomen.  My expectation or hope is that after this scan is that it will become an annual event. 

     

  • foxhd
    foxhd Member Posts: 3,181 Member

    Hodge Podge

     

    JoJo,  CT with contrast is the preferred here....contrast and the barium shake.

    I am only stage I grade 3, but my schedule post op was CT with contrast at 6 months and again at one year.  What ended up happening was a chest CT with contrast at 3 months (this due to ONC request). Then the 6 month CT with contrast on abdomen scan showed a spot on the remaining kidney that had not been remarked about before.  This caused my Onc to request another scan at the 9 mth mark.  Which brings me to this Thursday and I get my one year CT of Chest and Abdomen.  My expectation or hope is that after this scan is that it will become an annual event. 

     

    scans

    Jojo, I've had scans every 6 weeks for 18 months. Then every 3 months now. And yes, I had many mets show up in my first 6 months. 1 or 2 after being on nivolumab. Nothing new since Il-2 a year ago. I have a scan next week. We'll see what is going on.

  • tyjsbtn
    tyjsbtn Member Posts: 50
    Srashedb said:

    Mets

    shortened term for metastasis 

    Sarah

    Thank you Sarah.

    Thank you Sarah.

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Hi Jojo

    When my husband was first diagnosed with a 5 cm tumor, they did a Pet/ct of chest, abdomen, and pelvis and a bone scan.  He was then diagnosed as Stage 4.  I don't know if I should be answering your question or not, because he is not Stage 3.  He has Ct/pet scans of chest, abd and pelvis every 3 months.  When the target therapy drug was changed the scan was done at 6 to 8 weeks.  He has been NED for a year and a half and the scans are now done at 4 month intervals.  He has blood work every month.  Because he had mets on his spine, he has MRIs of his back every 3 months.  This has been for 2 1/2 years since he was diagnosed initially.  He has Medicare insurance with a supplemental plan.  Hope this information is helpful to you.    Annie.

  • GailN
    GailN Member Posts: 14 Member
    No recurrence for stage 3

    Jojo, I am stage 3a, grade 4, 5.8cm, ccRCC (diagnosed Jan 2012) and no recurrence for 2 and a half years. I know that this question dwells heavily on someone who is stage 3. Initially, I reached out to a lot of long term stage 3 survivors on the old ACOR or now SP site. The longest time for a stage 3 with no recurrence that I have seen is 14 years and they are still NED. With others being 13 years, 12 years, 8 years, 6 years, 5 years, 2 years - all still NED so far. Most of the recurrence tends to happen during the first 2 to 3 years but it can occur at any time so we always need to be vigilant.

    Don't forget most people who are on sites like this one tend to be actually battling metastases with most stage 3 and below choosing to be out enjoying life.  Yes, there are some who join initially but over time tend to drift away and you can end up with a skewed view of the potential survival. Therefore, it is relatively easy to start thinking metastases is evitable. The statistics are on our side with ~ 50 to 70% of stage 3 people never experiencing a recurrence. I keep telling my husband to have faith as I have almost passed the period where most recurrences happen but it is always in the back of my mind especially when I have unexpected pain somewhere etc. Over time this fear has lessened to some extent but at scan times this tends to resurface.

    By the way, this is first time I have posted  on this site, hope this helps, Gail

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    GailN said:

    No recurrence for stage 3

    Jojo, I am stage 3a, grade 4, 5.8cm, ccRCC (diagnosed Jan 2012) and no recurrence for 2 and a half years. I know that this question dwells heavily on someone who is stage 3. Initially, I reached out to a lot of long term stage 3 survivors on the old ACOR or now SP site. The longest time for a stage 3 with no recurrence that I have seen is 14 years and they are still NED. With others being 13 years, 12 years, 8 years, 6 years, 5 years, 2 years - all still NED so far. Most of the recurrence tends to happen during the first 2 to 3 years but it can occur at any time so we always need to be vigilant.

    Don't forget most people who are on sites like this one tend to be actually battling metastases with most stage 3 and below choosing to be out enjoying life.  Yes, there are some who join initially but over time tend to drift away and you can end up with a skewed view of the potential survival. Therefore, it is relatively easy to start thinking metastases is evitable. The statistics are on our side with ~ 50 to 70% of stage 3 people never experiencing a recurrence. I keep telling my husband to have faith as I have almost passed the period where most recurrences happen but it is always in the back of my mind especially when I have unexpected pain somewhere etc. Over time this fear has lessened to some extent but at scan times this tends to resurface.

    By the way, this is first time I have posted  on this site, hope this helps, Gail

    Thank you all for your input.

    Thank you all for your input. Not only is it really interesting to read each person's story, it is also nice to be reassured about things.

    And nice to meet you, Gail. Thank you for for your post. It was very informative and got me some answers that - as you put it - dwelled heavily with me.I was starting to dwell a lot. I didn't want to go there, but it is part of my journey, I guess. But I really am impressed with your follow up stories - and how many years NED these people have had at stage 3. Very good news!

    So here is to continued NED reports for everyone!

    Cheers!

    Jojo