CT Scan results

Jojo61
Jojo61 Member Posts: 1,309 Member

Hello all,

I just want to report that I got an "all clear" result from my scan. Very happy news. The lesion on my liver was stable.

I was stage 3 grade 2 when I had my 13 cm tumor removed via nephrectomy last December. The doctor said he wants to start monitoring me by ultrasound now. I argued a bit with him (I know that everyone here has reported CT scans every 6 months) so he said, okay, ultrasound and once a year CT scan. He said that the CT scan is so high in radiation he doesn't want to expose me to that. He said that one CT scan gives you the equivalent radation of 400 xrays. Any thoughts?

I also asked for my bloodwork numbers. He said they were excellent.

Hemoglobin 112

Creatnine - 86 (does that seem right?)

GFR 60.

Anyway....cause for celebration. I wanted to share the good news.

Hugs,

Jojo

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Comments

  • Phredswife
    Phredswife Member Posts: 162
    Great scan result

    Awesome Jojo! That must be such a relief.  Time for celebrating!

    Phred is having a heart stress test and ct scan next week. Hope our news is as good as yours.

    Stay well. Hugs Melissa xox 

  • Djinnie
    Djinnie Member Posts: 945
    Such great news!!

    Hey Jojo,

    That is such fantastic news, I am just so happy for you, have a great celebration:) 

    I am a little concerned about the data of X-ray ratio to scans though.That would mean by the end of this year I will have had the equivalent of 2400 Xrays in the last 2 yrs, flipping heck! We won't be needing any Christmas lights this year then!!

     

    Take care:)

     

    Djinnie x

  • Jan4you
    Jan4you Member Posts: 1,330 Member
    Yeah JoJo, glad your scan was

    Yeah JoJo, glad your scan was clear.

    What are they doing for your liver lesion? Watching it?

     

    And I am proud of you for advocating for yourself.. you go girl!!

    Keep on keeping on..

     

    Hugs, Jan

  • foxhd
    foxhd Member Posts: 3,181
    Djinnie said:

    Such great news!!

    Hey Jojo,

    That is such fantastic news, I am just so happy for you, have a great celebration:) 

    I am a little concerned about the data of X-ray ratio to scans though.That would mean by the end of this year I will have had the equivalent of 2400 Xrays in the last 2 yrs, flipping heck! We won't be needing any Christmas lights this year then!!

     

    Take care:)

     

    Djinnie x

    Nice Jojo!

    Great to hear.  But better recieving such good news. Like DJ, I must have had the equivilent of about 8 thousand x-rays. And that is not in jest. Could that really be true? But I guess I can't complain. Because I am still alive. If that is true, how come I still have hair and teeth?

    I'm authentically thrilled for you Jojo.

  • aamdsi
    aamdsi Member Posts: 284
    Deeeelighted!

    To hear your news!  Raise the roof!

     

    Laurie

  • Bellweather
    Bellweather Member Posts: 102
    Great news

    I can fell your excitement, congrats!   My doctor CT 's every 3 months at this point, I would like to know more on this.  Keep up the good work, your good news makes me feel good.

  • JoanneNH
    JoanneNH Member Posts: 115
    Have to admit that now I am

    Have to admit that now I am curious.   I am seen twice a year by oncologists to follow up my RCC, once in Tampa, FL, and the other in New Hampshire.   My oncologist did a chest x-ray this year instead of a CT scan (for my 2nd checkup for the year).  When I asked why, he said to save me from a bit of radiation.   Found this chart, and apparently we get a lot of radiation from our CT scans of the abdomen and pelvis.

     

    http://www.radiologyinfo.org/en/safety/?pg=sfty_xray

  • Srashedb
    Srashedb Member Posts: 482
    Wonderful

    great news, Jo and after reading your post about radiation amount, I just emailed my husband's doctor asking if there might be alternatives to the frequent scans.

    my guess is that a stage 4 patient will get the risk/benefit analysis but after reading about the risk of a second abdominal cancer on the Mayo site, I will demand more than this.

    your news about the stable liver lesion without treatment is GREAT, and seems to bear out some studies that note the impact of removing tumor load on merastasi.

    Sarah

     

  • sblairc
    sblairc Member Posts: 585
    So happy for you!

    Way to go!

  • Srashedb
    Srashedb Member Posts: 482
    JoanneNH said:

    Have to admit that now I am

    Have to admit that now I am curious.   I am seen twice a year by oncologists to follow up my RCC, once in Tampa, FL, and the other in New Hampshire.   My oncologist did a chest x-ray this year instead of a CT scan (for my 2nd checkup for the year).  When I asked why, he said to save me from a bit of radiation.   Found this chart, and apparently we get a lot of radiation from our CT scans of the abdomen and pelvis.

     

    http://www.radiologyinfo.org/en/safety/?pg=sfty_xray

    Thank you

    Joanne, thank you for that chart; do you know when it was put together. I have been researching all afternoon and JoJo's information is pretty accurate. 

    i hope I don't get the docs upset but a high risk of abdominal cancer for my husband, even with a stage 4 renal cancer, is not acceptable.

    Sarah

    2014-10-23

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

    So happy for you!

    Way to go!

    Thank you

    Thank you all for your good wishes. I am happy to share the news with you. We all celebrate together and also support each other in time of need.

    As far as the radiation in a CT scan goes, I have been reading up on it. One scan is similar to the dosage of the lowest doses received by some of the Japanese survivors of the atomic bombs. That is a scary bit of information. I have had 3 CT scans this year. I know a lot of you out there have had many more (our glow in the dark friends). These scans are hugely beneficial in finding/monitoring cancer, but we need to be aware of the dangers as well.  

    Hugs and wishes for good health!

    Jojo

     

  • Dave418
    Dave418 Member Posts: 95
    Good news for you!! :-) Party

    Good news for you!! :-) Party time!!

  • NanoSecond
    NanoSecond Member Posts: 653
    Congrats but...

    Hi JoJo.  Congratulations on the great news.  However, what sort of doctor are you consulting with?  At this point it should be an oncologist well experienced with metastatic renal cancer.  Nothing less.

    Just how big is that "stable" liver lesion?  Regardless, ultrasounds are not acceptable for monitoring stage IV RCC patients.

    Yes, we are being exposed to increased levels of radiation.  Yes, that may increase our chances of developing other cancers.  However, radiation induced cancer would likely take years if not decades to develop.  But mRCC can kill within months or a year.

    I am concerned that you may not be getting the best medical advice.  Please at least consider getting a second opinion while everything remains stable and under control.

    Just my 2 cents.

  • JoanneNH
    JoanneNH Member Posts: 115
    Srashedb said:

    Thank you

    Joanne, thank you for that chart; do you know when it was put together. I have been researching all afternoon and JoJo's information is pretty accurate. 

    i hope I don't get the docs upset but a high risk of abdominal cancer for my husband, even with a stage 4 renal cancer, is not acceptable.

    Sarah

    2014-10-23

    I do not know when it was put

    I do not know when it was put together, but I found at the bottom of the page "This page was reviewed on August 10, 2014."

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    My message might have been a

    My message might have been a little misleading. Perhaps I didn't use the best wording. For that I apologize. The lesion on my liver was never identified as cancer. I am still stage 3. They were a bit concerned on the last scan.  I was scheduled to do an ultrasound this time around but because of that lesion they did another CT scan. Since there was no change in the lesion, they determined it to be a hemagioma .  So the uro-oncologist said from now on we will do ultrasound. I then asked if that would identify any cancer, and he said no but it would be informative in other ways and then mentioned the high radiation. He agreed to a scan once a year. I have mixed feelings about it, but in the Canadian health system, I don't have much say in the matter. I just wanted everyone to be aware of the radiation factor. I read somewhere that someone got a CT scan for broken ribs - futile to do since the treatment for that would have been the same regardless. Why expose yourself unnecessarily - in that kind of case. For monitoring of cancer, CT scans, of course, are necessary.

     

     

     

  • donna_lee
    donna_lee Member Posts: 1,024 Member
    Jojo61 said:

    My message might have been a

    My message might have been a little misleading. Perhaps I didn't use the best wording. For that I apologize. The lesion on my liver was never identified as cancer. I am still stage 3. They were a bit concerned on the last scan.  I was scheduled to do an ultrasound this time around but because of that lesion they did another CT scan. Since there was no change in the lesion, they determined it to be a hemagioma .  So the uro-oncologist said from now on we will do ultrasound. I then asked if that would identify any cancer, and he said no but it would be informative in other ways and then mentioned the high radiation. He agreed to a scan once a year. I have mixed feelings about it, but in the Canadian health system, I don't have much say in the matter. I just wanted everyone to be aware of the radiation factor. I read somewhere that someone got a CT scan for broken ribs - futile to do since the treatment for that would have been the same regardless. Why expose yourself unnecessarily - in that kind of case. For monitoring of cancer, CT scans, of course, are necessary.

     

     

     

    Congrats on good news

    It's great to hear positive news.  I've gotten soooooo tired of medical appointments this past year.

    Most all oncologists are aware of the extra readiation a patient is exposed to with a chest/abd./pelvic CT, as opposed to a chest x-ray combined with an abdominal and pelvic ultra sound.  There is a risk either way.

    Having a determination of an hemangioma should relieve your mind a bit.  For the first 3 years, the CT's kept coming back with a large "cyst" in what was remaining of my liver. Finally, during an ultrasound, they were able to catch it in various stages of filling with blood and it's circulation.  It's just a large, vascular "strawberry birthmark" in the liver.  Not a tumor!!!

    I'm finally at 1 scan per year, but it's taken a while.

    Good Luck JoJo.

    Donna

  • NanoSecond
    NanoSecond Member Posts: 653
    Jojo61 said:

    My message might have been a

    My message might have been a little misleading. Perhaps I didn't use the best wording. For that I apologize. The lesion on my liver was never identified as cancer. I am still stage 3. They were a bit concerned on the last scan.  I was scheduled to do an ultrasound this time around but because of that lesion they did another CT scan. Since there was no change in the lesion, they determined it to be a hemagioma .  So the uro-oncologist said from now on we will do ultrasound. I then asked if that would identify any cancer, and he said no but it would be informative in other ways and then mentioned the high radiation. He agreed to a scan once a year. I have mixed feelings about it, but in the Canadian health system, I don't have much say in the matter. I just wanted everyone to be aware of the radiation factor. I read somewhere that someone got a CT scan for broken ribs - futile to do since the treatment for that would have been the same regardless. Why expose yourself unnecessarily - in that kind of case. For monitoring of cancer, CT scans, of course, are necessary.

     

     

     

    Clarifications

    Thanks for the clarifications, JoJo.  Let me just explain where I am coming from. In July 2012 a routine scan showed that I had developed bone mets in three locations.  Prior to that I had been "NED" for over 2 years after my left nephrectomy.  I had been stage III - now I had graduated to stage IV.  I was put on Sutent plus Xgeva and this combo worked quite well for the next 14 months. There was no progression and no new mets.  However, in December 2013, another routine CT-scan now revealed the presence of lesions on my liver.  [I should explain that several prior CT-scans had shown one very small hypodense area in my liver but it had not grown and so it had not been considered a met.]  What we all did not understand at that time was these new liver mets were extremely aggressive - unlike my bone mets.

    I was switched to Inlyta (Axitinib) in early January. But by early March it was clear that it had done nothing to control my mets at all. I then joined a clinical trial of an anti-PDL1 drug made by EMD Serono.  By the end of May it was alarmingly clear that it too had failed.  My liver mets were now massive and too numerous to even count. After leaving that trial I started on Carbozantinib (Cometriq) but within weeks it became clear that it too had failed.

    At this point in time (last June) I had one last FDA approved drug in my "arsenal" - Afinitor (Everolimus).  Nobody thought it would work for me. What I found out (only later) was that had this drug not worked I was just weeks away from liver failure and certain death. However, it did work and it is still working.  My last CT-scan showed shrinkage of all of those aggressive tumors - some by as much as 50%.  I am extremely lucky as that kind of response to this drug is only seen in about 3% of the population.

    My next CT-scan will be next week.  At this point I feel great. I continue to be totally pain-free and pain-medication free. I am back to my "normal" self (whatever that means) and thankful for every single breath.  I also don't give a hoot about how much radiation I have been exposed to - as it has certainly saved my life.

    So it is for this reason (bitter lesson?) that I feel that any "weirdness" in the liver needs to be monitored very carefully and should require scans at least once every 3 or 4 months.  Scans that can reveal mets and that means something far more effective than ultrasounds.

  • Jan4you
    Jan4you Member Posts: 1,330 Member

    Clarifications

    Thanks for the clarifications, JoJo.  Let me just explain where I am coming from. In July 2012 a routine scan showed that I had developed bone mets in three locations.  Prior to that I had been "NED" for over 2 years after my left nephrectomy.  I had been stage III - now I had graduated to stage IV.  I was put on Sutent plus Xgeva and this combo worked quite well for the next 14 months. There was no progression and no new mets.  However, in December 2013, another routine CT-scan now revealed the presence of lesions on my liver.  [I should explain that several prior CT-scans had shown one very small hypodense area in my liver but it had not grown and so it had not been considered a met.]  What we all did not understand at that time was these new liver mets were extremely aggressive - unlike my bone mets.

    I was switched to Inlyta (Axitinib) in early January. But by early March it was clear that it had done nothing to control my mets at all. I then joined a clinical trial of an anti-PDL1 drug made by EMD Serono.  By the end of May it was alarmingly clear that it too had failed.  My liver mets were now massive and too numerous to even count. After leaving that trial I started on Carbozantinib (Cometriq) but within weeks it became clear that it too had failed.

    At this point in time (last June) I had one last FDA approved drug in my "arsenal" - Afinitor (Everolimus).  Nobody thought it would work for me. What I found out (only later) was that had this drug not worked I was just weeks away from liver failure and certain death. However, it did work and it is still working.  My last CT-scan showed shrinkage of all of those aggressive tumors - some by as much as 50%.  I am extremely lucky as that kind of response to this drug is only seen in about 3% of the population.

    My next CT-scan will be next week.  At this point I feel great. I continue to be totally pain-free and pain-medication free. I am back to my "normal" self (whatever that means) and thankful for every single breath.  I also don't give a hoot about how much radiation I have been exposed to - as it has certainly saved my life.

    So it is for this reason (bitter lesson?) that I feel that any "weirdness" in the liver needs to be monitored very carefully and should require scans at least once every 3 or 4 months.  Scans that can reveal mets and that means something far more effective than ultrasounds.

    WOW, Nano, glad you are pain

    WOW, Nano, glad you are pain free and tumors are shrinking!!

    I was concerned for you as last I remember you were in such pain and not yourself.

    You are a great asset to us!!

     

    Warmly, Jan

  • sblairc
    sblairc Member Posts: 585
    Thanks for bringing up the topic, JoJo and for Nano

    Glad to see this being discussed here. Good to hear from you Nano! My husband is chromophobe diagnosis so I follow here carefully seeing what others do in the event we need to move to treatments. T3a, important for follow up. 

    Personally, (as a wife not a patient) I feel the fear of the "unknown" potential effect multiple doses of CT scan radiation (as in, it could or could not result in problems) is less than the fear of kidney cancer metastatic disease not getting prompt attention. Perhaps if my husband's tumor wasn't T3A, extensively necrotic I would be a little more wary, but in our case I'll take all the CT scans I can get for him!!! 

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Neil, thank you for sharing

    Neil, thank you for sharing your story. It is very informative and I trust your input always. And since the start of my journey with RCC is very similar to the beginning of your story (I realize that everyone's story is very different), that makes me second guess my oncologist's decision. I will be more vigilant and forceful in the use of a CT scan.  Hearing the amount of radiation that comes from one CT scan is alarming at first, but when you say it can take decades for any cancer to form from that kind of exposure, that brings a sigh of relief and gives me perspective.

    I continue to learn here - thank you everyone for your input and valuable information!

    Hugs

    Jojo