Newby

PamPam2
PamPam2 Member Posts: 370 Member
edited March 2014 in Colorectal Cancer #1
Hello. I'm a newby to the site. It has been four years since I started my journey with cancer. Colon cancer stage 4 tumor grew through colon wall, overy plastered with tumor, and cancer cells in lymph nodes in abdomin. Went through the surgeries, some of the chemo, had a bag about a year, port in chest, removed about 9 months ago. Now getting tested very little, wondering if not enough? Gave up a long time ago worrying about statistics. Broke and in debt, going back to school at age 50. Try not to worry too much about cancer reoccuring, and wondering if the doctors are being blaise, as I am on medicaid. Never had a PET scan, it's been over a year since a cat scan or colonoscopy. Any thoughts? I can offer my experience with anyone who wants, share experiences, and how I have dealt with a lot of things.
Pam

Comments

  • lisa42
    lisa42 Member Posts: 3,625 Member
    #2
    follow up scan schedule
    Hi Pam,

    Welcome to this site- everyone who responds here is always very caring of each other and insightful to different experierneces, thoughts, feelings, etc.
    Anyhow, if it's been over a year since your last CT and colonoscopy, you definitely need to call your doctor and tell him/her that you want to set up a CT scan and colonoscopy, as it's overdue. I know getting those tests done and waiting for the outcome is always scary (trust me, I definitely know firsthand!), but it would be remiss to let it go on longer unchecked. Unfortunately, some doctors are more remiss than others about follow up care. Are you seeing an oncologist for follow up, or just a regular internist? Also, unfortunately, being on medicaid might have something to do with it, but push it and I believe they have to comply. I believe the standard of care usually is to get checked/scanned at least every six months for the first two years, then yearly after that for five years (anyone else can let me know if I'm mistaken here). My oncologist wanted to scan me every 3 months for the first year, every six months for two years after that, and yearly for the following five (oh, if only I could be so fortunate to get to that point!) After my first three month follow up scan, I did have a recurrence in my lungs. I'd call your doctor today and make the request!!
    Take care!
    Lisa
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #3
    lisa42 said:

    follow up scan schedule
    Hi Pam,

    Welcome to this site- everyone who responds here is always very caring of each other and insightful to different experierneces, thoughts, feelings, etc.
    Anyhow, if it's been over a year since your last CT and colonoscopy, you definitely need to call your doctor and tell him/her that you want to set up a CT scan and colonoscopy, as it's overdue. I know getting those tests done and waiting for the outcome is always scary (trust me, I definitely know firsthand!), but it would be remiss to let it go on longer unchecked. Unfortunately, some doctors are more remiss than others about follow up care. Are you seeing an oncologist for follow up, or just a regular internist? Also, unfortunately, being on medicaid might have something to do with it, but push it and I believe they have to comply. I believe the standard of care usually is to get checked/scanned at least every six months for the first two years, then yearly after that for five years (anyone else can let me know if I'm mistaken here). My oncologist wanted to scan me every 3 months for the first year, every six months for two years after that, and yearly for the following five (oh, if only I could be so fortunate to get to that point!) After my first three month follow up scan, I did have a recurrence in my lungs. I'd call your doctor today and make the request!!
    Take care!
    Lisa

    Get checked!
    I agree! You definitely need to have testing done NOW. It makes me angry that you're being left to figure this out on your own. Your doctor should have set up a schedule for checkups.

    *Hugs*
    Gail
  • PamPam2
    PamPam2 Member Posts: 370 Member
    #4
    tests
    Yes thanks for your reply. They were doing colonoscopy and ct scans yearly, the past three years, then said this year I could go to every 2 years, I just don't think they are following close enough. I see an oncologist and family doctor, I have had changes in both physicians 2 times over the past 4 years, and now have to travel to another city to have a colonoscopy, when they changed medicaid to managed care, I had to take who I could get, the sytsem is not too good, though I do have to say they seem to be genuinly concerned and do take their time when I have appointments. I think I will talk to my family doctor at my next appt. I see him quite regularly for monitoring of my cholesterol and blood pressure medications. It is a big temptation to just go along and forget about testing, but then you start to worry you are not keeping ahead of anything that might occur. I know statistic-wise I was at very high risk of reoccurance within a year, but statisics are just that, everyone is different. Does anyone have anything to say about PET scans? How much better, if any, than CT for cancer screening? And does anyone know if Medicaid allows for them?
    Pam
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #5
    PET scans
    Hi, I believe PET scans are more expensive than CT's. Probably a good idea to get done, if the insurance will pay for it, as it can show where metabolic activity is. Be aware, however, that PETs are limited and sometimes you can have malignancies that don't light up on a PET, and you can also have areas that light up on the PET that actually are not cancerous. My oncologist started off giving me a PET scan right away and put a lot of importance on it. Later, however, when I was speaking to a liver specialist at UCSD prior to my liver resection, he said it's his opinion that regular oncologists put too much emphasis on PETs. Before my resection, I had a PET scan that showed nothing lighting up on the PET anymore. The CT, however, did still show three spots in my liver. My oncologist told me that, since they no longer lit up on the PET after all my chemo, that those spots were either dead tissue or even scar tissue where the tumors used to be. He didn't think I needed to do anything to my liver. During my consult w/ the liver specialist, however, he told me that he'd be able to actually physically look my liver over with a handheld ultrasound device and check it out for other things. He also said that it had happened to him numerous times where, during a liver resection, he'd remove and biopsy tumors that had not lit up on a PET scan and they still turned out to be cancerous. Funny thing is, that's what ended up happening to me. My tumors were removed (in addition to three more small tumors he found during surgery), and the biopsy on all six of them showed positive for cancer, despite the fact that they didn't show up on the PET scan.
    I'm not saying you shouldn't get a PET scan, but just be aware that they can be limited. If you get a PET, which could still be a good idea, it might be good to get it along with a CT scan. An MRI could be another option for you, as well. Just don't let your Medicaid tell you that you can't get any scan!
    Best wishes to you,
    Lisa
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #6
    lisa42 said:

    PET scans
    Hi, I believe PET scans are more expensive than CT's. Probably a good idea to get done, if the insurance will pay for it, as it can show where metabolic activity is. Be aware, however, that PETs are limited and sometimes you can have malignancies that don't light up on a PET, and you can also have areas that light up on the PET that actually are not cancerous. My oncologist started off giving me a PET scan right away and put a lot of importance on it. Later, however, when I was speaking to a liver specialist at UCSD prior to my liver resection, he said it's his opinion that regular oncologists put too much emphasis on PETs. Before my resection, I had a PET scan that showed nothing lighting up on the PET anymore. The CT, however, did still show three spots in my liver. My oncologist told me that, since they no longer lit up on the PET after all my chemo, that those spots were either dead tissue or even scar tissue where the tumors used to be. He didn't think I needed to do anything to my liver. During my consult w/ the liver specialist, however, he told me that he'd be able to actually physically look my liver over with a handheld ultrasound device and check it out for other things. He also said that it had happened to him numerous times where, during a liver resection, he'd remove and biopsy tumors that had not lit up on a PET scan and they still turned out to be cancerous. Funny thing is, that's what ended up happening to me. My tumors were removed (in addition to three more small tumors he found during surgery), and the biopsy on all six of them showed positive for cancer, despite the fact that they didn't show up on the PET scan.
    I'm not saying you shouldn't get a PET scan, but just be aware that they can be limited. If you get a PET, which could still be a good idea, it might be good to get it along with a CT scan. An MRI could be another option for you, as well. Just don't let your Medicaid tell you that you can't get any scan!
    Best wishes to you,
    Lisa

    Different Post Chemo checkup regimen here
    I ask that very question the last appointment with my onc. I have 4 treatments left ( post op). I ask him what was in store after the last treatment, any PET or CT scans...He says no, there will be regular blood work done and CEA checked and as long as elevation doesn't occur then there is no need to subject me to any more radiation than I had to have. If in these regularly scheduled tests something should happen to appear then a path of action would be determined when it comes up. Until then just simple blood work at 3 month intervals, then 6 month intervals, also with colonoscopy every year. After 5 years with no reoccurence then its pretty much considered cured. In 4 more treatments my life goes back to normal. I will not worry about reoccurence, I want to enjoy the rest of my life here on earth...My God will do the worrying of reoccurence for me...... :-)
  • KathiM
    KathiM Member Posts: 8,028 Member
    #7
    Buzzard said:

    Different Post Chemo checkup regimen here
    I ask that very question the last appointment with my onc. I have 4 treatments left ( post op). I ask him what was in store after the last treatment, any PET or CT scans...He says no, there will be regular blood work done and CEA checked and as long as elevation doesn't occur then there is no need to subject me to any more radiation than I had to have. If in these regularly scheduled tests something should happen to appear then a path of action would be determined when it comes up. Until then just simple blood work at 3 month intervals, then 6 month intervals, also with colonoscopy every year. After 5 years with no reoccurence then its pretty much considered cured. In 4 more treatments my life goes back to normal. I will not worry about reoccurence, I want to enjoy the rest of my life here on earth...My God will do the worrying of reoccurence for me...... :-)

    Same here...4 years post-dx....
    I have had a yearly colonoscopy for the 3 years post treatment. I can now go 2, according to my gastric guy. I only had 2 PET scans the entire experience, one right after dx to determine spread, and one following treatment to determine residual. I have yearly CT scans of pelvis and abdomen, but now these are at my request. My oncologist says that unless there is a problem, the less radiation to the area, the better...I had enough over the course of treatment.

    As Buzzard says, I'm back to living life. And living it LARGE!!! Sure, I have my moments...but then, if I get nervous, I just call for reassurance from my onc. I still see her for my breast cancer follow-ups (6 months after rectal tx this started), but she is now saying that this isn't even necessary...talking the other 'C' word...(CURED!)

    Hugs, Kathi

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