What do people usually have CT scans or PET/CT scans

antcat
antcat Member Posts: 270
edited March 2014 in Ovarian Cancer #1
I've been reading alot of discussions where people go for CT/PET scans. When my gyn/onc sent me for a scan he always did a PET/CT because he said it was a better tool. Now I go to MSKCC and they only seem to do CT scans. Has anyone gone to MSKCC and had a PET/CT scan? Do any of you feel it is a better tool for diagnosing tumors than just a CT scan.

Thanks.

Comments

  • nancy591
    nancy591 Member Posts: 1,027 Member
    my opinion
    I've had PET/CTs at MSK. It has been the tool used to monitor my recurrence. Prior to my recurrence CTs were used. My recurrence was caught by PET scan. The CT portion was clear. Most protocols (clincial trials) call for a CT scan. I was told a stand alone CT scan is more thorough then the CT portion of a PET/CT. That being said, I believe it depends on where you are in your disease progression. Now that I've been unsuccessfully fighting a recurrence fr 13 months and gone through several different chemos I believe they will be happy just doing a plain CT scan. I've jumped treatment twice when the CT portion was unchanged or SLIGHTLY IMPROVED but the PET portion showed new or worsening areas. A doctor once told me 'well, if we can't see it on the ct we won't worry about it'. Frankly, now that I feel I'm burning through many chemos, I can understand that logic.
  • upsofloating
    upsofloating Member Posts: 466 Member
    For me the value of PET
    For me the value of PET scans is when something looks questionable on a CT is whether or not it lights up on a PET as well. Although my gyn-onc prefers to do PET if I'm looking to take a chemo break as well.
  • antcat
    antcat Member Posts: 270
    nancy591 said:

    my opinion
    I've had PET/CTs at MSK. It has been the tool used to monitor my recurrence. Prior to my recurrence CTs were used. My recurrence was caught by PET scan. The CT portion was clear. Most protocols (clincial trials) call for a CT scan. I was told a stand alone CT scan is more thorough then the CT portion of a PET/CT. That being said, I believe it depends on where you are in your disease progression. Now that I've been unsuccessfully fighting a recurrence fr 13 months and gone through several different chemos I believe they will be happy just doing a plain CT scan. I've jumped treatment twice when the CT portion was unchanged or SLIGHTLY IMPROVED but the PET portion showed new or worsening areas. A doctor once told me 'well, if we can't see it on the ct we won't worry about it'. Frankly, now that I feel I'm burning through many chemos, I can understand that logic.

    PET/CT scan for Nancy 591
    Hi Nancy, thanks. Sometimes I don't understand the way a doctor says things. I wonder how many chemos they can keep giving to people. I was very fortunate that I do have an excellent and compassionate gynecologist/oncologist, unfortunately he is so busy with surgeries, he doesn't have the time to do just the oncology part of chemo. I know several people who were on a hotline group I used to talk to that had a gyn/oncologist who did the chemo part.

    Anyway, I do feel very blessed with him, and I was very lucky when my Primary Care physician called him in.

    When you went to MSKCC, did they recommend the PET/CT to you?
  • nancy591
    nancy591 Member Posts: 1,027 Member
    antcat said:

    PET/CT scan for Nancy 591
    Hi Nancy, thanks. Sometimes I don't understand the way a doctor says things. I wonder how many chemos they can keep giving to people. I was very fortunate that I do have an excellent and compassionate gynecologist/oncologist, unfortunately he is so busy with surgeries, he doesn't have the time to do just the oncology part of chemo. I know several people who were on a hotline group I used to talk to that had a gyn/oncologist who did the chemo part.

    Anyway, I do feel very blessed with him, and I was very lucky when my Primary Care physician called him in.

    When you went to MSKCC, did they recommend the PET/CT to you?

    MSKCC
    I've only been treated at MSKCC. Before my recurrence was discovered I was having weird bowel symptoms but the CT was coming up clean. My surgeon said if it happens again I want to do a PET. So, it happened again and I had a PET/CT. This was my very first PET scan. CT portion was clean but the PET showed a 13mm area on my colon. Colonoscopy confirmed recurrent ovca. Since then I've only had PET/CTs until I did that trial several weeks back. That trial called for a CT. So I did a CT before and after the trial. Now that I am no longer in the trial I do not know what will be ordered. I will have a scan in March. I don't think I will demand a PET/CT. At this point I think I tend to go with the theory if they can't see it on the ct they are not going to worry about it.
  • Hissy_Fitz
    Hissy_Fitz Member Posts: 1,834

    For me the value of PET
    For me the value of PET scans is when something looks questionable on a CT is whether or not it lights up on a PET as well. Although my gyn-onc prefers to do PET if I'm looking to take a chemo break as well.

    I've only had CT scans, and
    I've only had CT scans, and not a lot of those. First one was to confirm the diagnosis (Sept 2009), second one after I finished first line treatment, to confirm that I was NED (Mar 2010), and the third one two weeks ago, after I finished a year of Taxol maintenance, to confirm continued remission.

    Both my local gyn/oncologist and Dr Sabbatini at MSKCC, where I am going for a clinical trial, have ordered just the CT scans.

    I am either very pro-active or extremely controlling (probably both), but I also asked that my regularly scheduled colonoscopy be moved up a year, just for my own edification. OC has a rep for spreading to the bowel, thus my concern. The scope was normal. No polyps.


    Carlene
  • antcat
    antcat Member Posts: 270

    I've only had CT scans, and
    I've only had CT scans, and not a lot of those. First one was to confirm the diagnosis (Sept 2009), second one after I finished first line treatment, to confirm that I was NED (Mar 2010), and the third one two weeks ago, after I finished a year of Taxol maintenance, to confirm continued remission.

    Both my local gyn/oncologist and Dr Sabbatini at MSKCC, where I am going for a clinical trial, have ordered just the CT scans.

    I am either very pro-active or extremely controlling (probably both), but I also asked that my regularly scheduled colonoscopy be moved up a year, just for my own edification. OC has a rep for spreading to the bowel, thus my concern. The scope was normal. No polyps.


    Carlene

    Being pro-active is good Carlene
    Hi Carlene, thanks for the info. I guess I'll leave it up to the Dr. And, I think it's great to be pro-actice or extremely controlling (probably both). I never was in the beginning when I was diagnosed with OC but now I am. I question everything, and research everything and bring it to the dr.'s attention. I'm glad your scope was normal with no polyps. Hope everything goes good with clinical trial.
  • lindaprocopio
    lindaprocopio Member Posts: 1,980
    antcat said:

    Being pro-active is good Carlene
    Hi Carlene, thanks for the info. I guess I'll leave it up to the Dr. And, I think it's great to be pro-actice or extremely controlling (probably both). I never was in the beginning when I was diagnosed with OC but now I am. I question everything, and research everything and bring it to the dr.'s attention. I'm glad your scope was normal with no polyps. Hope everything goes good with clinical trial.

    I had CTs only until I had a recurrence; now get CT/PETS.
    My oncologist was a firm believer in CT-scans initially when I started treatment in late 2008, and I had a baseline CT-scan done 6 weeks after I healed from my surgery, and one 6 weeks after I finished treatment to confirm remission. But when my 2nd every-3-months monitoring CT scan showed enlarged lymph nodes, he ordered my 1st PET scan to see if those nodes lit up. They did and with a spiking CA-125, I went back into treatment for the suspected recurrence. (1 of the nodes was in a location too dangerous for surgery or a needle biopsy, & the rationale for not biopsying the other suspicious node was that how would we know about the one we couldn't get to even if the one we could reach was benign? I was offered "wait-and-see" or starting weekly taxol, and jumped at the weekly chemo.)

    After 3 months my CA125 had flattened out in the mid-40's (a significant drop, but still not normal) and my 1st CT/PET fusion scan was ordered to see if we needed to change chemos. Turned out my 1st CT/PET was NED and I got a 4 1/2 month break before my next CT/PET showed disease progression and I was back in chemo, where I've been ever since. But I have had a short series of chemos that haven't worked for me, and each time, at 3 month intervals, I've been given a CT/PET to provide a new baseline for the new chemo and measure the disease progression. I've been often enough to have a friendship with the technicians there.

    My CT/PET this week will be the 1st time I've had a CT/PET just 2 months since I had my last one. That extreme measure is because my CA125 went up 500 points from an already alarming 300+ to over 850 in the past 2 months even though I have been getting carboplatin. I don't like getting that much radiation from all the scans, but my oncologist says that not closely monitoring my cancer progression is much more dangerous than anything the scans can do to me. ARGH!

    Hope that helps.
  • antcat
    antcat Member Posts: 270

    I had CTs only until I had a recurrence; now get CT/PETS.
    My oncologist was a firm believer in CT-scans initially when I started treatment in late 2008, and I had a baseline CT-scan done 6 weeks after I healed from my surgery, and one 6 weeks after I finished treatment to confirm remission. But when my 2nd every-3-months monitoring CT scan showed enlarged lymph nodes, he ordered my 1st PET scan to see if those nodes lit up. They did and with a spiking CA-125, I went back into treatment for the suspected recurrence. (1 of the nodes was in a location too dangerous for surgery or a needle biopsy, & the rationale for not biopsying the other suspicious node was that how would we know about the one we couldn't get to even if the one we could reach was benign? I was offered "wait-and-see" or starting weekly taxol, and jumped at the weekly chemo.)

    After 3 months my CA125 had flattened out in the mid-40's (a significant drop, but still not normal) and my 1st CT/PET fusion scan was ordered to see if we needed to change chemos. Turned out my 1st CT/PET was NED and I got a 4 1/2 month break before my next CT/PET showed disease progression and I was back in chemo, where I've been ever since. But I have had a short series of chemos that haven't worked for me, and each time, at 3 month intervals, I've been given a CT/PET to provide a new baseline for the new chemo and measure the disease progression. I've been often enough to have a friendship with the technicians there.

    My CT/PET this week will be the 1st time I've had a CT/PET just 2 months since I had my last one. That extreme measure is because my CA125 went up 500 points from an already alarming 300+ to over 850 in the past 2 months even though I have been getting carboplatin. I don't like getting that much radiation from all the scans, but my oncologist says that not closely monitoring my cancer progression is much more dangerous than anything the scans can do to me. ARGH!

    Hope that helps.

    Hi Linda, thanks. When I go for my 3rd treatment, I'm going to ask the dr. about PET/CT scans. I learned that you have to ask questions, doctors may not like that, but that's their problem. My gyn/oncologist was ordering my scans and always ordered PET/CT and where I used to go at a local hospital, they told me that PET/CT's are less dangerous than regular CT's. I also have been told by previous oncologists, "well the benefits outweigh the risks", but I'm sure they wouldn't want to get scans every 2 months.