Sorry Olga,
I forgot to mention I did have contrast! It was a chest abdomen and pelvis CT. I am definitely allergic to the contrast material. The Onco wants me to pre-medicate with prednisone and benedryl.
I am really trying to find out if a CT is the most accurate to diagnose asps, as the previous one I had never even picked up the original tumor.
Annika
Annika from Chicago - Dx 2010
Re: Annika from Chicago - Dx 2010
The most reliable scan to find an unknown spread of the ASPS from the primary is MRI but you can not have an MRI for the moving objects (so the chest and upper part of the abdomen could not be scanned) and they will not order the MRI for the pelvic/lower abdomen as the insurance will not cover it and the area is to big. The usual game is to have a CT for a starter for the pelvic and if it finds something suspicious then the additionally MRI can be done to clarify the result. The scans themselves can not find anything - its the people that read them have to see that something is wrong somewhere. The CT scan is very unspecific, it is just like a picture that getting reviewed by the radiologist and probably they missed the second tumor on a CT scan but the ultrasound radiologist saw it. MRI on the other hand is very specific in its signals and malignant tumors produce different signal from the normal structures but it has the technical limitations and cost more to do. Ultrasound can only be done in some locations/cases and is also very unspecific so it is not a definite scan but more a preliminary scan. You can not do anything for the lungs except a CT. Ivan often had a simple chest CT (without a contrast) and it was really fine to see the mets there, but probably for the abdomen they need it.
Olga
Re: Annika from Chicago - Dx 2010
Hello Annika 
if it were me i would have CT chest , pelvic and abdoman done no contrast. Also MRI brain .. then you will know how clear you are... i also now have reactions to contrast and all my oncs are now having most paitents that i have talked to no longer use the contrast after the first scans :/
Please DO NOT let them tell you that they do not think it has gone to your brain and skiped other places. *THINK* doesnt mean it is not there an thats just not enough for me. These tests are first for you to know then them to help you! I am finaly getting the MRI to brain it has only been CT and that is not enough. It is better to cover our selfs it is our bodies and are pro active treatments and scans that keep us alive
Get the scans done.. all of them please...
if it were me i would have CT chest , pelvic and abdoman done no contrast. Also MRI brain .. then you will know how clear you are... i also now have reactions to contrast and all my oncs are now having most paitents that i have talked to no longer use the contrast after the first scans :/
Please DO NOT let them tell you that they do not think it has gone to your brain and skiped other places. *THINK* doesnt mean it is not there an thats just not enough for me. These tests are first for you to know then them to help you! I am finaly getting the MRI to brain it has only been CT and that is not enough. It is better to cover our selfs it is our bodies and are pro active treatments and scans that keep us alive
Get the scans done.. all of them please...
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Annika from Chicago - Dx 2010
Oh I have no problem doing the CT without contrast. I just need my doc to ok it. I just called them too to request a MRI of my noggin, as well
Re: Annika from Chicago - Dx 2010
YAY!Annika wrote:Oh I have no problem doing the CT without contrast. I just need my doc to ok it. I just called them too to request a MRI of my noggin, as well
This way you have a clear picture of whats going on *Even with out contrast* and no guessing because when it comes to cancer the unknown sucks
Information is power when it comes to Cancer !!
I am getting scanned again after 4th of July and i am as usual worried...
I cant use the contrast now i used to be able to an now i get sick and not for a few hours last time i had weird stuff for a week.
“Many times it is much more important to know what kind of patient has the disease, than what kind of disease the patient has”.
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
"The microbe is nothing, the soil is everything)""
Claude Bernard~
Amanda
Re: Annika from Chicago - Dx 2010
Annika,
Did you have the chalky contrast? They recently started using a new contrast at NIH which was more like just drinking water. I don't know what the difference is but it's something worth looking into.
I certainly hope that you are cancer free. But with this disease, it seems that it can be just lurking in your cels waiting to pop up somewhere unexpected. jordanne thought that while she was on Cediranib she only had the lung mets left in her body. Turns out that there were tumor particles hanging out in her bone marrow which have now metasticized into tumors in her bones.
Have you had a Pet scan. These are tricky and can show a lot of activity, but it can also show uptake in areas that you might want to have scanned. Since ASPS usually starts in the extremities you might want to have your arms and legs scanned as well. Sometimes those primaries take a long time before they get big enough for you to notice.
I don't want to scare you, but it's up to you to be vigilant and know exactly what you are dealing with.
Do all that you can to keep yourself healthy for those little ones.
God bless you,
Dotty W
mom of Jordanne Gerbing
Did you have the chalky contrast? They recently started using a new contrast at NIH which was more like just drinking water. I don't know what the difference is but it's something worth looking into.
I certainly hope that you are cancer free. But with this disease, it seems that it can be just lurking in your cels waiting to pop up somewhere unexpected. jordanne thought that while she was on Cediranib she only had the lung mets left in her body. Turns out that there were tumor particles hanging out in her bone marrow which have now metasticized into tumors in her bones.
Have you had a Pet scan. These are tricky and can show a lot of activity, but it can also show uptake in areas that you might want to have scanned. Since ASPS usually starts in the extremities you might want to have your arms and legs scanned as well. Sometimes those primaries take a long time before they get big enough for you to notice.
I don't want to scare you, but it's up to you to be vigilant and know exactly what you are dealing with.
Do all that you can to keep yourself healthy for those little ones.
God bless you,
Dotty W
mom of Jordanne Gerbing