Scanning.

CRashster
CRashster Member Posts: 241 Member

after my next scan, I'm thinking about not scanning anymore. It's been over a year, I'll have 3 good scans behind me. It just seems like an unnecessary money drain. What's your opinion?

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    edited May 2017 #2
    Don't be pennywise and pound foolish

    CR,

    There have been members whose results came back RCC 10 years later although most mets show up within 3 years. Your odds of course depend on the size and grade alternative. Talk with your Dr. about altrasound alternatives which is the scan typical after 5 years.

     

    Icemantoo

  • CRashster
    CRashster Member Posts: 241 Member
    Iceman

    its not really just a money thing. Its kind of a quality of life thing. Everyone always worries about their scans, it's an emotional thing Too. I can't explain. I'm tired of worrying for maybe no reason.

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    Quality of life

    CR,

     

    The object of a scan is to pick up something early befor it effects your quality of life.

     

     

    Icemantoo

  • dhs1963
    dhs1963 Member Posts: 513
    I think you are being short sighted.

    In time, the scanxiety lessons.  I am 5 years from diagnosis, and 4.5 years ned.  I am at six month scans, after the next one, it will be one year.

    I assume CT on your avitar is your image.  If so, the acorn shaped kidney had a big tumor (the hat of the acorn).  You were easily stage II.  

    You got lucky.  But you need to remain vigilent to stay lucky.

  • daisybud
    daisybud Member Posts: 541 Member
    edited May 2017 #6
    I guess

    I guess I think of it totally different.  I am worried that at the 5 year mark they will stop the scans.  The stress of the ct scan is hard for me but not knowing is so much worse for me personally. I got the urologist to agree on yearly ultrasound scans indefinitely. Even though I am worried they're not enough. Ultrasound did not see the tumor for me and continued pain led to ct which found it. I think followups are very important.

     

     

  • jason.2835
    jason.2835 Member Posts: 337 Member
    Never a waste of time

    CRashter,

    Judging by the picture of your scan in your profile (and it's hard to judge your situation because you haven't updated your profile info; I highly recommend you do that it helps members help you) I would say you had a 7-8 cm tumor?  Even though I only had a 2.8cm tumor, I am not interested in ever stopping scans.  

    Yes, it takes a psychological toll.  Yes, it costs money.  But the chances that a doctor can help you when a met shows up early rather than 2 or 3 years down the road are infinitely greater.  I had a horrendous time with my last scans... they called me back for more pictures because they wanted a closer look at something... and even though those 24 hours were some of the worst of my life I will still get scans religiously every year.  

    It is all we can do for our families that we remain vigilant and stay on top of this.

    - Jay 

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    edited May 2017 #8
    Well I understand not wanting

    Well I understand not wanting the scans. My surgeon/Urologist told me he always does this blood test which shows him if there are any changes suggesting increase in cancer cells. So there's that test in the meantime.

    Hang in there, Jan

  • CRashster
    CRashster Member Posts: 241 Member
    edited May 2017 #9
    Worry.

    you worry about the scans, you think about the scans, you wish your scan was tomorrow, yet you're scared to death of it. Everyone of us knows exactly when their next scan is. It's always on our minds. Yes, a scan saved my life and it may happen again. What if I have mets to the brain? They don't scan my head. Its like our lives happen between scans. It seems crazy. If the cancer comes back, it comes back. If it doesn't, I'm good.

  • CRashster
    CRashster Member Posts: 241 Member

    Never a waste of time

    CRashter,

    Judging by the picture of your scan in your profile (and it's hard to judge your situation because you haven't updated your profile info; I highly recommend you do that it helps members help you) I would say you had a 7-8 cm tumor?  Even though I only had a 2.8cm tumor, I am not interested in ever stopping scans.  

    Yes, it takes a psychological toll.  Yes, it costs money.  But the chances that a doctor can help you when a met shows up early rather than 2 or 3 years down the road are infinitely greater.  I had a horrendous time with my last scans... they called me back for more pictures because they wanted a closer look at something... and even though those 24 hours were some of the worst of my life I will still get scans religiously every year.  

    It is all we can do for our families that we remain vigilant and stay on top of this.

    - Jay 

    Tumor

    it may seem weird, but I don't know how big my tumor was. The doc said the size of an eggplant. Others here know way more about their tumors then I know about mine. It was also aggresive clear cell cancer. That's about all I know about it.

  • CRashster
    CRashster Member Posts: 241 Member
    edited May 2017 #11
    dhs1963 said:

    I think you are being short sighted.

    In time, the scanxiety lessons.  I am 5 years from diagnosis, and 4.5 years ned.  I am at six month scans, after the next one, it will be one year.

    I assume CT on your avitar is your image.  If so, the acorn shaped kidney had a big tumor (the hat of the acorn).  You were easily stage II.  

    You got lucky.  But you need to remain vigilent to stay lucky.

    Yeah

    it was big. Doctor never discussed stage. It did permeate the fat layer, but no mets. I figure stage 3.

  • foroughsh
    foroughsh Member Posts: 779 Member
    If I were you I wouldn't risk

    If I were you I wouldn't risk it.

    It's been almost three years since my diagnosis and I'm aware that it migh come back even ten years later, I prefer to catch it as soon as possible

  • Dutch1
    Dutch1 Member Posts: 152
    I would keep up with the scans

    To me, keeping up with the scans would be less anxious than going without scans.  Catching RCC early is everything and all of us have a significant risk of recurrence.  Please reconsider.

  • Kat23502
    Kat23502 Member Posts: 179 Member
    CRashster said:

    Worry.

    you worry about the scans, you think about the scans, you wish your scan was tomorrow, yet you're scared to death of it. Everyone of us knows exactly when their next scan is. It's always on our minds. Yes, a scan saved my life and it may happen again. What if I have mets to the brain? They don't scan my head. Its like our lives happen between scans. It seems crazy. If the cancer comes back, it comes back. If it doesn't, I'm good.

    They don't scan your brain

    They don't scan your brain because of the way RCC spreads and the mechanism of metastatic disease. All cancers have a tendency to travel to certain areas. While RCC can go to the brain, the chances of it going there first and only there without being in lung, bone, or other read is fairly small. That's why we do abdomen and pelvis unless symptoms warrant further.

  • Kat23502
    Kat23502 Member Posts: 179 Member
    While I believe in lifelong

    While I believe in lifelong imaging, I actually think it's less the 10 year and more the 2-3 year you should be so concerned about. As someone that does this for a living, I can't understand the mindset. The short term worry for a few wars in exchange for life for many, many, years seems like an easy choice to me. If something is caught early, you can likely be treated. If caught late or not at all, perhaps you'd wish for those scans. You can always speak to your physician about spacing them out a bit more or doing other sorts of imaging. Everyone has to make the best decision for themselves and I think we will all respect that. However, I would really suggest you find out more about your cancer: stage, grade, size. Then, you can do your research and make the best decision for yourself. 

  • APny
    APny Member Posts: 1,995 Member
    I hate the scans. I dread the

    I hate the scans. I dread the scans. I worry about the scans. Yes, it affects the quality of my life as the day nears and for a couple of days after. But not following up scares me more. It's over 3 years for me and my doc said I can go to yearly scans so once a year I'll deal with the anxiety and stress. I totally get why you want to stop. I hate this %$#@ disease and what it does to us. But I think it'd be foolish to neglect follow ups. Please don't.

  • CRashster
    CRashster Member Posts: 241 Member
    Kat23502 said:

    While I believe in lifelong

    While I believe in lifelong imaging, I actually think it's less the 10 year and more the 2-3 year you should be so concerned about. As someone that does this for a living, I can't understand the mindset. The short term worry for a few wars in exchange for life for many, many, years seems like an easy choice to me. If something is caught early, you can likely be treated. If caught late or not at all, perhaps you'd wish for those scans. You can always speak to your physician about spacing them out a bit more or doing other sorts of imaging. Everyone has to make the best decision for themselves and I think we will all respect that. However, I would really suggest you find out more about your cancer: stage, grade, size. Then, you can do your research and make the best decision for yourself. 

    It may sound strange

    but I don't have that much interest in my cancer. It's not that I don't care, but it's more like something I can't control. It had the perfect chance to kill me, but it didn't. Will it kill me yet? Maybe, but I feel like I can't really control that either. I'm done worrying about stuff I can't control.

  • donna_lee
    donna_lee Member Posts: 1,041 Member
    CRashter

    rWhy did you ask what we thought; especially if you had already made up your mind to quit having CT's?  You appear to be totally "head in the sand" about what you've gone through already.  Was that all for Naught?  A waste of your time and money?  Would you rather still have the cancer in you kidney?  Or have it spread, like it could have already done?  And just not grown to a size that is detectable, or causing other health problems?

    Only you can make that decision; but at least make it with a full set of information.  And for that you need to querry your Dr. and find out about the cancer you have had, find out the size and type of tumor, the staging that went with it.  Then ask your Dr. what he thinks is advisable.  Only then, make your decision.

    'Nuff Said.   Read my bio to find out what can happen.

    donna_lee

     

  • Allochka
    Allochka Member Posts: 1,060 Member
    CR,

    CR,

    you said that cancer is smth you can't control. Well, for me it is different - with regular scans you'll have the control over situation. When caught early, a lot can be treated. Choosing to have scans is being responsible and in charge. Choosing not to - like Donna said, "head in the sand" and passing all control to cancer.

    My husband had no hesitations what to choose. He chose follow up and being in control.

    Please reconsider

  • CRashster
    CRashster Member Posts: 241 Member
    Opposite.

    To me, it feels opposite. By worrying with the scans and thinking about the scans, THAT seems like the cancer is controlling me.

  • Kat23502
    Kat23502 Member Posts: 179 Member
    CRashster said:

    It may sound strange

    but I don't have that much interest in my cancer. It's not that I don't care, but it's more like something I can't control. It had the perfect chance to kill me, but it didn't. Will it kill me yet? Maybe, but I feel like I can't really control that either. I'm done worrying about stuff I can't control.

    You can't control it, no. A

    You can't control it, no. A surgeon can in many ways though. Supposed a lung met developes, it is small and a surgeon does a wedge resention of your lung and you are now disease free. It stays because you didn't have scans and that one met sends out more cells and your one met becomes multiple that are inoperable. NOW, you've lost control. Mets propagate, they are not all from the original source.