Pet Scan

terrical · February 2004

Hi everyone, I've only posted a few times, but each time the "semi-colons" have been a great help. I hope you can offer advice now, too. My mother was diagnosed with Stage IV colon cancer in July 2003 (She had a small spot on her liver). She was only given 8 months to a year. She didn't see the use of going through heavy duty chemo with such low odds, but she did agree to Xloda orally. And guess what??? Her last two CAT scans have shown a clear liver!!! Her doctor wants to thread a small camera through her groin into her liver to get a better look. My mom has refused. You have mentioned PET scans in many of your postings. Am I correct in assuming that PET scans pick up more than CAT scans? Do PETs require threading the camera, also? My mom (She actually asked me this time to ask all of you!) and I would appreciate any info you can give us. I do keep up with all of you and read your posts weekly. I am constantly telling my mother that there ARE survivors out there, and try to get her to come to this website. She just doesn't seem to want to talk about her illness. She's always been a very private person. However, lately, she's been asking how Sponge Bob and Judith are doing. She wants to know if Emily is still juicing, and Bud, she is so concerned about your recent setback. She HAS been listening and all of you ARE making an impact on her. I can't thank you enough for sharing your stories, for giving us hope and, well, for being here. May God bless all of you. Terri

nanuk · February 2004

Hi Terri: I'm not sure, but believe that the PET is
a full body scan much like the CT. I am told that it can't see less than 6mm, but is good for identifying
"Hot Spots" - Maybe someone can add to this. Tell your mom to join us for support-she can contribute
and maintain her privacy.. Bud

spongebob · February 2004

Ahoy, Terri & mom -

Great to hear from you again and so psyched that your mom is doing so well!

I think Bud nailed the PET scan thing - it can see more than a CT scan (what's with all of these tests being named after domesticated animals? Cat scan, pet scan... when do they bring on the dog scan? - in sheepy's case a lamb scan?)

BTW, I'm doing great and thanks for asking!

Keep up the good fight and looking forward to hearing from you AND your mom soon!

- SB

jsabol · February 2004

Hi Terry and mom,
I can understand your mom's wish to distance herself from this stuff; we each have our own ways of coping, and she's lucky to have your support and to use you to do the typing!
Thank her for her concern; so far the chemo has been OK; the folks at this site provide more info than my onc, who I think likes to keep things s/w vague and upbeat. He understands my need for specific answers, and now asks me what questions I have written in my book (I take a sort of diary in with me). I would pose your question about alternate testing routes directly to the onc also; I don't have any relevant info about PET scans, but I will eventually be looking into followup info, too. Pre-op, my "hot node" (onc talk) didn't show on CT scan, and my CEA was <0.5, so apparantly my cancer does not give off "markers". I may be turning to PET scans, too. Regards to mom. Judy

pattieb · February 2004

Hi Terri & Mom
With a pet scan they inject and then you just lay there while the camera is going over your body it takes about 1 1/2 hours no cameras just this small injection. Doesn't hurt. So glad to hear that your moms spot has gone. Keep us informed.
Pattie

terrical · February 2004

nanuk said:
Hi Terri: I'm not sure, but believe that the PET is
a full body scan much like the CT. I am told that it can't see less than 6mm, but is good for identifying
"Hot Spots" - Maybe someone can add to this. Tell your mom to join us for support-she can contribute
and maintain her privacy.. Bud

Thanks, Bud. When the dr. told my mom she only had a few months left, she believed him and, I guess, didn't think she had much of a story to share. Now, though, she's becoming more optimistic so maybe, just maybe, you'll be hearing from her soon!

terrical · February 2004

pattieb said:
Hi Terri & Mom
With a pet scan they inject and then you just lay there while the camera is going over your body it takes about 1 1/2 hours no cameras just this small injection. Doesn't hurt. So glad to hear that your moms spot has gone. Keep us informed.
Pattie

Hi Pattie,
Thanks for the info. Do you have the PET regulary or at the end of treatments? Is it better than the CAT? Thanks, Terri

terrical · February 2004

spongebob said:
Ahoy, Terri & mom -

Great to hear from you again and so psyched that your mom is doing so well!

I think Bud nailed the PET scan thing - it can see more than a CT scan (what's with all of these tests being named after domesticated animals? Cat scan, pet scan... when do they bring on the dog scan? - in sheepy's case a lamb scan?)

BTW, I'm doing great and thanks for asking!

Keep up the good fight and looking forward to hearing from you AND your mom soon!

- SB

Hello to you, too, SB,
Thanks for the reply. One of the posts I read recently mentioned that more was learned here than through the oncs. And that's RIGHT!! My mom's onc seems to not want to say anymore than he has to, and we don't know enough to ask the right questions.

So glad you're doing great. I'll relay the info! Terri

terrical · February 2004

jsabol said:
Hi Terry and mom,
I can understand your mom's wish to distance herself from this stuff; we each have our own ways of coping, and she's lucky to have your support and to use you to do the typing!
Thank her for her concern; so far the chemo has been OK; the folks at this site provide more info than my onc, who I think likes to keep things s/w vague and upbeat. He understands my need for specific answers, and now asks me what questions I have written in my book (I take a sort of diary in with me). I would pose your question about alternate testing routes directly to the onc also; I don't have any relevant info about PET scans, but I will eventually be looking into followup info, too. Pre-op, my "hot node" (onc talk) didn't show on CT scan, and my CEA was <0.5, so apparantly my cancer does not give off "markers". I may be turning to PET scans, too. Regards to mom. Judy</p>

Hi Judy,
I totally agree that more info is obtained here than at the dr.'s office! So, the PET is something that is used at the end of treatment? My mom's spot didn't show up on the CT scan before surgery either nor in her blood tests. It was just a tiny spot on her liver, though. Have you ever heard of the kind of test (with the inserted camera) that this onc is recommending? It seems to me that the PET would be a lot less painful.

I'm glad you're doing well. Hang in there. Hope to hear from you soon. Terri

nanuk · February 2004

Terri: This is from a brochure I picked up in the Radiologist's office:
"PET is a whole body imaging technique utilizing an FDG (Florine 18 tracer that directly measures metabolic, physiological and biochemical functions of the human body. PET can provide information not detected by SPECT, CT OR MRI:
. Detect cancer before it forms into a stage detectable by MRI or /CT
. Detemines whether a tumor is benign or malignant without the need for invasive procedures.
. Shows the process of disease and how it responds to treatment.
. Differentiates disease recurrence from radiation necrosis and post surgical changes.
. inspects all organ systems of the body in a single exam.

StacyGleaso · February 2004

Hi Terri...

Big bonus for the PET scan...NO PREP! The only thing your mom will have to do is avoid sweets and avoid exercise prior to the scan. Exercising increases sugars in the system, that could be detected as something bad, even though it isn't. It does involve a very tiny injection of a dye-like substance, which isn't even left in during the scan itself. The only other requirement is to lay very still like an MRI. PET scans pick up things that CT scans do not. A CT scan could have results that are acceptable, yet the PET scan could show the REAL truth. PET scans are often denied by insurance companies, so make sure it's covered prior to the scan, as they are pricey.

And by the way...tell those doctors to not give your mom a timeline in which to complete this life...I was stage 4...and that was over two years ago...today I am all clear. Nothing is impossible...
Hope this helped even more for you...

Stacy

2bhealed · February 2004

Hi Terri and mom!

that is so sweet of her to ask about us. And yes, of course! I am still juicing every day at least 16 ounces sometimes more. I remain an interesting shade of orange...so most folks probably think I am hooked on having a tan from a bottle or something. Whatever.

A PET involves being injected with radioactive sugar. Sugar is cancer's food of choice so when the sugar goes through your system it announces its presence and if there is cancer it will get all excited and start a feeding frenzy to which the radioactivity will pick this up and create a 'hotspot' on the film which is slowly being taken while you lay there just like a CT. It is not painful but they do insert a catheter for the duration b/c you cannot move. We get to choose our own piped in music and if your mom has her own by all means bring it along and they should be able to pop it in so she can tune out during the procedure.

I am not aware of the camera test you are asking about except an experimental one where you swallow a camera but that can only see in your gut right?

Now, having told you all this I will tell you that sometimes PET scans will pick up hotspots that are NOT cancerous. It happened to me last May. An ultrasound done revealed that it was a cyst and not a tumor on my ovary. They were ready to go in there for a biopsy but the doc said it was cycstic. A later ultrasound revealed it had shrunk. Normal ovarian activity for a 42 yr old woman. So beware that PET's are not completely conclusive either!

Greetings to your Mom.

peace, emily the juicer

terrical · February 2004

nanuk said:
Terri: This is from a brochure I picked up in the Radiologist's office:
"PET is a whole body imaging technique utilizing an FDG (Florine 18 tracer that directly measures metabolic, physiological and biochemical functions of the human body. PET can provide information not detected by SPECT, CT OR MRI:
. Detect cancer before it forms into a stage detectable by MRI or /CT
. Detemines whether a tumor is benign or malignant without the need for invasive procedures.
. Shows the process of disease and how it responds to treatment.
. Differentiates disease recurrence from radiation necrosis and post surgical changes.
. inspects all organ systems of the body in a single exam.

Thanks, Bud. This was very helpful. I wish there were some way I could help you! The best I can do for now is include you in my prayers. Terri

terrical · February 2004

StacyGleaso said:
Hi Terri...

Big bonus for the PET scan...NO PREP! The only thing your mom will have to do is avoid sweets and avoid exercise prior to the scan. Exercising increases sugars in the system, that could be detected as something bad, even though it isn't. It does involve a very tiny injection of a dye-like substance, which isn't even left in during the scan itself. The only other requirement is to lay very still like an MRI. PET scans pick up things that CT scans do not. A CT scan could have results that are acceptable, yet the PET scan could show the REAL truth. PET scans are often denied by insurance companies, so make sure it's covered prior to the scan, as they are pricey.

And by the way...tell those doctors to not give your mom a timeline in which to complete this life...I was stage 4...and that was over two years ago...today I am all clear. Nothing is impossible...
Hope this helped even more for you...

Stacy

Thanks Stacy,
You are one of our inspirations. The PET sounds like it is the way to go for us - if we can get medicare to pay. Congratulations on beating the odds! What do those doctors know anyway! Terri

terrical · February 2004

2bhealed said:
Hi Terri and mom!

that is so sweet of her to ask about us. And yes, of course! I am still juicing every day at least 16 ounces sometimes more. I remain an interesting shade of orange...so most folks probably think I am hooked on having a tan from a bottle or something. Whatever.

A PET involves being injected with radioactive sugar. Sugar is cancer's food of choice so when the sugar goes through your system it announces its presence and if there is cancer it will get all excited and start a feeding frenzy to which the radioactivity will pick this up and create a 'hotspot' on the film which is slowly being taken while you lay there just like a CT. It is not painful but they do insert a catheter for the duration b/c you cannot move. We get to choose our own piped in music and if your mom has her own by all means bring it along and they should be able to pop it in so she can tune out during the procedure.

I am not aware of the camera test you are asking about except an experimental one where you swallow a camera but that can only see in your gut right?

Now, having told you all this I will tell you that sometimes PET scans will pick up hotspots that are NOT cancerous. It happened to me last May. An ultrasound done revealed that it was a cyst and not a tumor on my ovary. They were ready to go in there for a biopsy but the doc said it was cycstic. A later ultrasound revealed it had shrunk. Normal ovarian activity for a 42 yr old woman. So beware that PET's are not completely conclusive either!

Greetings to your Mom.

peace, emily the juicer

Hi Emily,
Thanks for the info. If most of you have already had a PET, I wonder why it has not been offered to my mother - maybe it's too soon? I will ask her onc when we go again in three weeks. This is her last round of Xeloda and I'm worried about what will happen without the chemo. I seem to remember someone mentioning a new drug that would be released by the FDA next month that is supposed to cut off the blood supply to tumors. Do you know anything about it?

We're so happy for you, Emily, that you've beat this demon. It can be done and we're going to give it our best shot. Listen to me - I keep saying we we we like I have it, too. But I almost feel like I do. It's very hard to watch someone you love suffer, and I'm sure it's even harder to be the one suffering. I'm glad I have all of you to talk to and get information and advice from. My poor, sweet mom just doesn't like to discuss her problems.
Juice away, Emily, and thanks again for being here.
Terri (from warm Texas!)

nanuk · February 2004

terrical said:
Hi Emily,
Thanks for the info. If most of you have already had a PET, I wonder why it has not been offered to my mother - maybe it's too soon? I will ask her onc when we go again in three weeks. This is her last round of Xeloda and I'm worried about what will happen without the chemo. I seem to remember someone mentioning a new drug that would be released by the FDA next month that is supposed to cut off the blood supply to tumors. Do you know anything about it?

We're so happy for you, Emily, that you've beat this demon. It can be done and we're going to give it our best shot. Listen to me - I keep saying we we we like I have it, too. But I almost feel like I do. It's very hard to watch someone you love suffer, and I'm sure it's even harder to be the one suffering. I'm glad I have all of you to talk to and get information and advice from. My poor, sweet mom just doesn't like to discuss her problems.
Juice away, Emily, and thanks again for being here.
Terri (from warm Texas!)

one group of these drugs are tyrosine Kinase Inhibitors, PTK 787, etc. they are supposed to block small blood vessels, and limit tumor growth and metastasis Bud

terrical · February 2004

nanuk said:
one group of these drugs are tyrosine Kinase Inhibitors, PTK 787, etc. they are supposed to block small blood vessels, and limit tumor growth and metastasis Bud

Hi Bud,
After I wrote the question last night, I went on the internet to try to find the answer myself. I came up with Avistan and Erbitux. Do these fall into the category you listed? These drugs sound promising and I'm sure going to ask the doctor about them. The site I found was: www.ascoadvocacy.blogspot.com. The title was: ASCO Cancer Advocacy Report - New information derived from the 2003 annual meeting of the American Society of Clinical Oncology. It had a lot of helpful information.
Have you met with your onc yet to discuss your next step? Terri

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