What to look for

Dutch1
Dutch1 Member Posts: 152

In Feb 2013, I had my right kidney and a large tumor removed.  For the first year thereafter, I participated in a clinical trial which required follow up exams with my oncologist every 6 weeks and a CT scan every 4 months.  With the conclusion of the test trial, I am on a cycle of 3-month visits to the oncologist and CT scans every 6 months.  All scans to date have been clean.

Just like everyone else, the time between scans (and especially the weeks leading up to a scan) can get a little tense for us.  Between scans, what sorts of symptoms should I be tuned into for immediate discussion with my oncologist?  I am 64 years old and this cancer thing has definitely aged me.  It's taken a toll.  So, how do I distinguish between symptoms that I should just continue to work through (the pains of getting older) and those that I should talk to my doctor about?  What are the signals from my body that I should be alert to for follow up with my doc?

Or, is it that with 6-month scans, any recurrence of my cancer will be caught by the CT scan before I actually feel any signs that it's back?

For some of you folks, this must seem like a low-tech question.  I wish that I had the knowledge about kidney cancer that I see displayed by many of you.

Thanks.

Dutch

Comments

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    If one only knew

    Dutch,

     

    It sounds like a new advance in medicine/ To be able to determine the recurrance of Cancer without a scan. Millions are looking for that answer.

     

    By the way, you are still young at 64. The bones start creaking and everything does not work as well when you get older. I just turned 71. My RCC was diagnosed when I was a 58 year old kid and the neph was just a few days after I turned 59.

     

    Icemantoo

  • a_oaklee
    a_oaklee Member Posts: 566 Member
    Great question

    Hi Dutch.  That is a really great question.  It is something we struggle with too.  All the aches and pains and we wonder if it is something new with cancer, or just arthritis, etc..  I really wish I had the answer.  My best suggestion would be, when in doubt, just make a doctors appointment.

    What to look for?  My husband does monitor his blood pressure twice a day, because high blood pressure is really bad for kidneys.  He monitors his weight and trys to maintain it.  I think what you want to pay attention to is "changes" from the "norm".  I would think that would be a good red flag.  I would always error on the side of caution. 

    I am very interested in what others have to say about this.  Best wishes.

    Annie

  • donna_lee
    donna_lee Member Posts: 1,024 Member
    a_oaklee said:

    Great question

    Hi Dutch.  That is a really great question.  It is something we struggle with too.  All the aches and pains and we wonder if it is something new with cancer, or just arthritis, etc..  I really wish I had the answer.  My best suggestion would be, when in doubt, just make a doctors appointment.

    What to look for?  My husband does monitor his blood pressure twice a day, because high blood pressure is really bad for kidneys.  He monitors his weight and trys to maintain it.  I think what you want to pay attention to is "changes" from the "norm".  I would think that would be a good red flag.  I would always error on the side of caution. 

    I am very interested in what others have to say about this.  Best wishes.

    Annie

    Just turned 64...

    the year I was Dx'd, 8 years ago.  12x8x11 cm tumor on right kidney, with entire kidney removed.  Also the paracaval nodes under the kidney-2 or 11 positive; left 1/2 or liver with a large tumor; several benign wedges from R. side of liver. My original complaint had been, "do I have gall-stones?"  They found a partially blocked bile duct, so the gall bladder was also taken out on that same surgery.

    My schedule was CT and labs every 3 months for the oncologist; and I saw my Internist every 3 months also, as he was the one prescribing and monitoring my BP and other meds.

    It was the CT at 9 mo. and 12 months that indicated an enlarging lymph node in the area where my kidney had been,  As it was in a delicate location but still able to be biopsied, that was done.  Then I scheduled the surgery to have the node removed.

    I don't know the oncologist's logic on the following year; but he had me do labs every 3 months and a CT at 6 and 12 months.  The CT spotted another enlarging node.  Couldn't biopsy it, but a PET scan indicated it was a cancerous node.  Another surgery.

    Over the following 3 years, I had CT's every 3 months; and the oncologist was about ready to stretch them to every 6 months.  But lo and behold, the CT also caught the thyroid while running the chest-abdomen-pelvis and I had enlarged nodes in the thyroid.  Multiple tests over the next 4 months led to a Dx of benign growths.  And the oncologist was reluctant to turn me loose.  So I had CT's every 3 months until early 2014.  It has been 6 months and we're hoping to stretch it to 9 months

    At this time, I am not aware of any blood test that will indicate there is kidney cancer active in the body.  And to my knowledge, the only way to Dx any tumor growth is to wait until the CT reading detects a change in size.

    Since the original surgery in 2006, I have learned to read between the lines when the surgeon says, "We got it all."  What that really means is, "We removed everything that was visible to the human eye as remotely considered to be cancerous; or showed as a cyst on an x-ray and was removed and biopsied."

    Don't let me burst any bubbles... but be aware that this is a journey as a Cancer Survivor that you have just begun.  It is a roller coaster ride for the rest of your life.  And may we all live for many more birthdays.

    Donna

  • Dutch1
    Dutch1 Member Posts: 152
    donna_lee said:

    Just turned 64...

    the year I was Dx'd, 8 years ago.  12x8x11 cm tumor on right kidney, with entire kidney removed.  Also the paracaval nodes under the kidney-2 or 11 positive; left 1/2 or liver with a large tumor; several benign wedges from R. side of liver. My original complaint had been, "do I have gall-stones?"  They found a partially blocked bile duct, so the gall bladder was also taken out on that same surgery.

    My schedule was CT and labs every 3 months for the oncologist; and I saw my Internist every 3 months also, as he was the one prescribing and monitoring my BP and other meds.

    It was the CT at 9 mo. and 12 months that indicated an enlarging lymph node in the area where my kidney had been,  As it was in a delicate location but still able to be biopsied, that was done.  Then I scheduled the surgery to have the node removed.

    I don't know the oncologist's logic on the following year; but he had me do labs every 3 months and a CT at 6 and 12 months.  The CT spotted another enlarging node.  Couldn't biopsy it, but a PET scan indicated it was a cancerous node.  Another surgery.

    Over the following 3 years, I had CT's every 3 months; and the oncologist was about ready to stretch them to every 6 months.  But lo and behold, the CT also caught the thyroid while running the chest-abdomen-pelvis and I had enlarged nodes in the thyroid.  Multiple tests over the next 4 months led to a Dx of benign growths.  And the oncologist was reluctant to turn me loose.  So I had CT's every 3 months until early 2014.  It has been 6 months and we're hoping to stretch it to 9 months

    At this time, I am not aware of any blood test that will indicate there is kidney cancer active in the body.  And to my knowledge, the only way to Dx any tumor growth is to wait until the CT reading detects a change in size.

    Since the original surgery in 2006, I have learned to read between the lines when the surgeon says, "We got it all."  What that really means is, "We removed everything that was visible to the human eye as remotely considered to be cancerous; or showed as a cyst on an x-ray and was removed and biopsied."

    Don't let me burst any bubbles... but be aware that this is a journey as a Cancer Survivor that you have just begun.  It is a roller coaster ride for the rest of your life.  And may we all live for many more birthdays.

    Donna

    So, we just wait?

    I understand the need to wait from scan to scan.  So be it.

     

    What I want to do is to avoid missing any sort of sign from my body which should trigger (in a smarter person than I) a call to my oncologist to move up the next scan because of some sort of telling symptom.  If there are such symptoms that I should be sensitive to, I would like to know. 

     

    Right now, I only know to call if I have some sort of a new, significant and constant pain someplace.  Is there anything else?

     

    Dutch

  • sblairc
    sblairc Member Posts: 585
    Dutch1 said:

    So, we just wait?

    I understand the need to wait from scan to scan.  So be it.

     

    What I want to do is to avoid missing any sort of sign from my body which should trigger (in a smarter person than I) a call to my oncologist to move up the next scan because of some sort of telling symptom.  If there are such symptoms that I should be sensitive to, I would like to know. 

     

    Right now, I only know to call if I have some sort of a new, significant and constant pain someplace.  Is there anything else?

     

    Dutch

    That sounds about right

    I think that's about it. We weren't told otherwise. 

  • Srashedb
    Srashedb Member Posts: 482
    Dutch1 said:

    So, we just wait?

    I understand the need to wait from scan to scan.  So be it.

     

    What I want to do is to avoid missing any sort of sign from my body which should trigger (in a smarter person than I) a call to my oncologist to move up the next scan because of some sort of telling symptom.  If there are such symptoms that I should be sensitive to, I would like to know. 

     

    Right now, I only know to call if I have some sort of a new, significant and constant pain someplace.  Is there anything else?

     

    Dutch

    Another warning sign

    my husband is now on a 4 month scan schedule and his oncologist told him to call if there is any tingling in his legs, any numbness or unremitting pain.

    these are probably warnings for him since he had 2 mets in the spine when diagnosed.

    he has experienced aches and pains which are attributed to arthritis and scans have not detected any mets; the bone scan showed a "slight uptake" in a rib but the oncologist viewed the bone and chest scan and told us there was no cause for concern.

    Sarah

  • Galrim
    Galrim Member Posts: 307

    With 6 month scans, having symptoms showing before picked up by the scans is very unlikely. Only if you have a massively agressive subtype or similar unfortunate features, histologywise (is that even a word?), it could spur such rapid growth.

    /G

  • Rea
    Rea Member Posts: 28
    icemantoo said:

    If one only knew

    Dutch,

     

    It sounds like a new advance in medicine/ To be able to determine the recurrance of Cancer without a scan. Millions are looking for that answer.

     

    By the way, you are still young at 64. The bones start creaking and everything does not work as well when you get older. I just turned 71. My RCC was diagnosed when I was a 58 year old kid and the neph was just a few days after I turned 59.

     

    Icemantoo

    Hi icemantoo

    Did you undergo any treatment for your rcc?

  • icemantoo
    icemantoo Member Posts: 3,360 Member
    Rea said:

    Hi icemantoo

    Did you undergo any treatment for your rcc?

    My treatment

    Rea,

     

    Only the original neph. I also see a Nephrologist to monitor my Kidney function and blood pressure. If these get out of whak you are at risk for heart issues.

     

     

    Icemantoo