Update

MAliceR
MAliceR Member Posts: 98

Hi all.

I had my sigmoidoscopy today. The area where the CT showed a shadow and the PET scan lit up was completely clear inside my colon. The dr who did the test was sending the results to my surgeon and oncologist and they will have them tomorrow. At this point my results are inconclusive. He says next step will likely be a biopsy in the spot to check the outside of the colon. At that point they can decide on surgical options. 

He told me there are situations of false positives with PET scans but with my history everything needs to be checked out. I would not be surprised if it is growing outside. That is how my cancer started originally 4 1/2 years ago. A tumor started outside the colon and as it grew wrapped itself around and finally broke through the wall. 

So, I am not sure if this is good news or just a delay of the inevitable. I do want them to be thorough. I am still banking on them catching it really early. I am praying for a miracle. 

Does anyone here have experience with false PET scan positives? Oh and my CEA number has stayed steady. 

One second, minute, hour, day at a time.

MAlice

Comments

  • John23
    John23 Member Posts: 2,122 Member
    PETs....

    PETs....

    The PET was originally designed to help outline a cancerous tumor more clearly for a surgeon. The principle behind the technology is fairly simple....

    The cancer cell generally uses glucose at a higher rate than normal, healthy cells. The PET uses radioactive glucose via IV injection, with the assumption that the cancer cells will use more of it and it will "light up" as an indicator on the scan image. That would result in a clearer picture of the tumor.

    The downside is that a normal cell that is either growing or repairing itself will use glucose quite rapidly. And..... a cancer cell that is slower growing than healthy faster growing cells will not glow any brighter than the good cells.

    And to make it more difficult, any cell in any area that is in the process of repairing itself, will uptake the glucose faster than the surrounding cells.

    Using it for outlining a cancerous tumor is fine, but it's being used to attempt to locate cancer cells, something it was not initially designed to do. In my opinion, it's become a tool for "treasure hunting"; light up like a Christmas tree and be charged hundreds of thousands to try to put the bulbs out.

    Now that not to say that a PET hasn't helped individuals fight the cancer within by being provided chemicals to try to fight the cancer thanks to the scan, false positive or not... And the PET has located cancer tumors that did were not indicated via CT or MRI....

    The only PET that I have ever had, was ordered by my new surgeon. He explained that he wanted it to get a clearer picture of the tumor and it's progression prior to surgery. I reluctantly agreed to it. There's something about radioactive glucose and the added CT radiation with it, that bothers me.

    The false positives should be easy to understand, once the technology behind the PET, and the inherent nature of cell growth, is understood.

    Try to keep in mind, that a cancer cell is only a normal cell that has been damaged so badly that it can no longer take instructions regarding how to remain alive. The defective cell is usually removed via your immune system (T cells), and no harm occurs. If the immune system does not do what it should, and leaves that dying/dead cell behind, it can begin living via the fermentation process. One celled devices can live that simply! It consumes glucose at whatever rate it needs to, since it isn't restricted like a normal cell is. It spits out lactic acid as waste and the liver converts lactic acid into glucose. That's what cancer is all about.

    Our body (every living being's body) uses glucose to survive, and every living thing generates dead cells as part of the normal growing process. Avoiding "carcinogenic" substances is always a good idea, but our own body damages cells in it's effort to kill the cell in it's process of growing. The damaged/dead/dying cell can continue to survive via fermentation if the immune system does not remove it.... ala' cancer!

    Those of us that are susceptible to cancer will usually end up with cancer, regardless of any avoidance of "carcinogenic" substances. It's our immune system that's the cause of it being allowed to grow within us. Fix that, and you've solved the problem of cancer.

    So.... howzatt? Did I bore you?

    Do healthy things and keep a healthy attitude.

    You have my best wishes for you!

    John

     

  • beaumontdave
    beaumontdave Member Posts: 1,280 Member
    My first PET scan had false

    My first PET scan, that I have any memory of, had false positives, scared the hell out of me. The onc said nymph nodes under each arm and one on my neck, lit up. This was in the middle of chemo, he was bewildered, I was just scared. Turned out to be nothing, but nobody ever called to say that. Being scared is apparently not a medical concern, so have some faith, PET scans have false positives.................................Dave

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    John23 said:

    PETs....

    PETs....

    The PET was originally designed to help outline a cancerous tumor more clearly for a surgeon. The principle behind the technology is fairly simple....

    The cancer cell generally uses glucose at a higher rate than normal, healthy cells. The PET uses radioactive glucose via IV injection, with the assumption that the cancer cells will use more of it and it will "light up" as an indicator on the scan image. That would result in a clearer picture of the tumor.

    The downside is that a normal cell that is either growing or repairing itself will use glucose quite rapidly. And..... a cancer cell that is slower growing than healthy faster growing cells will not glow any brighter than the good cells.

    And to make it more difficult, any cell in any area that is in the process of repairing itself, will uptake the glucose faster than the surrounding cells.

    Using it for outlining a cancerous tumor is fine, but it's being used to attempt to locate cancer cells, something it was not initially designed to do. In my opinion, it's become a tool for "treasure hunting"; light up like a Christmas tree and be charged hundreds of thousands to try to put the bulbs out.

    Now that not to say that a PET hasn't helped individuals fight the cancer within by being provided chemicals to try to fight the cancer thanks to the scan, false positive or not... And the PET has located cancer tumors that did were not indicated via CT or MRI....

    The only PET that I have ever had, was ordered by my new surgeon. He explained that he wanted it to get a clearer picture of the tumor and it's progression prior to surgery. I reluctantly agreed to it. There's something about radioactive glucose and the added CT radiation with it, that bothers me.

    The false positives should be easy to understand, once the technology behind the PET, and the inherent nature of cell growth, is understood.

    Try to keep in mind, that a cancer cell is only a normal cell that has been damaged so badly that it can no longer take instructions regarding how to remain alive. The defective cell is usually removed via your immune system (T cells), and no harm occurs. If the immune system does not do what it should, and leaves that dying/dead cell behind, it can begin living via the fermentation process. One celled devices can live that simply! It consumes glucose at whatever rate it needs to, since it isn't restricted like a normal cell is. It spits out lactic acid as waste and the liver converts lactic acid into glucose. That's what cancer is all about.

    Our body (every living being's body) uses glucose to survive, and every living thing generates dead cells as part of the normal growing process. Avoiding "carcinogenic" substances is always a good idea, but our own body damages cells in it's effort to kill the cell in it's process of growing. The damaged/dead/dying cell can continue to survive via fermentation if the immune system does not remove it.... ala' cancer!

    Those of us that are susceptible to cancer will usually end up with cancer, regardless of any avoidance of "carcinogenic" substances. It's our immune system that's the cause of it being allowed to grow within us. Fix that, and you've solved the problem of cancer.

    So.... howzatt? Did I bore you?

    Do healthy things and keep a healthy attitude.

    You have my best wishes for you!

    John

     

    John, that was a really good

    John, that was a really good tutorial on PET scans, thank you! Not boring at all, by the way.

    Jan

  • MAliceR
    MAliceR Member Posts: 98
    Thanks All

    I am not new to PET scans, have had 3 and all had correct results despite me reading that sometimes diabetics have false readings. That has not been my situation, but then I have normal A1c readings (5.6-5.7) and have been keeping it in check with diet and exiercise for 17 years so far.  I guess I am looking for a good reason for a positive other than the one we all never want to hear again. 

    The info shared has been very educating and NO not boring at all. I come here not only for the support but information sharing. Often those of us who have been living with the disease have picked up knowledge we don't hear from our drs. 

    I am playing the waiting game now, we all know how that goes. My oncologist gave me this advice when I spoke with her a couple days ago. "PLEASE don't take off in an airplane while you wait. In fact, please stay out of large crowds, away from anyone with a cold or flu and if you can stay away from small children. They can be ill before anyone knows it and pass it along to you. We want you well so when/if we need to do surgery we don't have to delay until you get well." Ha, she knows me TOO WELL. I was actually thinking of making a quick trip to Vegas for a few days while I wait for next steps.  I even had my husband convinced I needed slot machines as a diversion. Sigh. This will also make Easter Sunday not so fun as the family is large and there are 9 great nieces and nephews under the age of 6. Guess it will be a quiet home Easter this year. Feeling like a recluse also doesn't make the waiting any easier. OK. Enough whining for now. I am going to go find a project. There must be a Do It Yourself project I can do. Hmmmm. Maybe I will paint something. The living room would look nice a new color. 

    Have a blessed Easter everyone.

    MAlice

  • JanJan63
    JanJan63 Member Posts: 2,478 Member
    MAliceR said:

    Thanks All

    I am not new to PET scans, have had 3 and all had correct results despite me reading that sometimes diabetics have false readings. That has not been my situation, but then I have normal A1c readings (5.6-5.7) and have been keeping it in check with diet and exiercise for 17 years so far.  I guess I am looking for a good reason for a positive other than the one we all never want to hear again. 

    The info shared has been very educating and NO not boring at all. I come here not only for the support but information sharing. Often those of us who have been living with the disease have picked up knowledge we don't hear from our drs. 

    I am playing the waiting game now, we all know how that goes. My oncologist gave me this advice when I spoke with her a couple days ago. "PLEASE don't take off in an airplane while you wait. In fact, please stay out of large crowds, away from anyone with a cold or flu and if you can stay away from small children. They can be ill before anyone knows it and pass it along to you. We want you well so when/if we need to do surgery we don't have to delay until you get well." Ha, she knows me TOO WELL. I was actually thinking of making a quick trip to Vegas for a few days while I wait for next steps.  I even had my husband convinced I needed slot machines as a diversion. Sigh. This will also make Easter Sunday not so fun as the family is large and there are 9 great nieces and nephews under the age of 6. Guess it will be a quiet home Easter this year. Feeling like a recluse also doesn't make the waiting any easier. OK. Enough whining for now. I am going to go find a project. There must be a Do It Yourself project I can do. Hmmmm. Maybe I will paint something. The living room would look nice a new color. 

    Have a blessed Easter everyone.

    MAlice

    If there was a 'like' button

    If there was a 'like' button I'd press it now.