not sure what cea's are

kapper48
kapper48 Member Posts: 85
edited March 2014 in Colorectal Cancer #1
Today I went in for round 8 of god only knows how many, I am very disapointed with myself right now . My Dr.told me that my labs all came back very very good she started naming all different kinds of crap off and when she got to my cea's she said it was outstanding 2.5. This is the second time around for me with cancer and I don't even know what all these numbers are. I know now that I need to ask more questions than I do. I feel like when I ask any questions at all that I don't get the answers I am looking for. I go to a great cancer center here in st louis (Siteman/Barnes Hospital) but am woundering if I should change to a smaller center, and then maybe my questions will get answered. I have already been told that I have only 2-3 years left to live so at least maybe before the good lord takes me I will know what the hell all this means. Well they say 2-3 years but I plan on proving them wrong! Anyway is 2.5 good???
Pat

Comments

  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #2
    Pat..................Run fast and far ........
    OK first of all CEA is a term known as Cryo-Embryonic-Antigens. The numbers go as follow...1-3 for non-smokers, 3-6 for smokers, and over 6 denotes some type of activity. It is though not a foolproof marker for all but it is reliable for more than most. I am 1.9 at the moment but I am with the reading of 1.9 showing no activity in which a 2.5 is telling you the same thing if its reliable for you, that there is no activity...

    Now, the statement.....

    "I have already been told that I have only 2-3 years left to live"

    Who have you talked with lately? Or, have you made the wife real mad ,cause there's not but one person that can possibly tell you that and its not your Dr. To many things change in the medical field way to quick for any body to even make a statement like that to tell anyone that they only have 2-3 years left. Do you know how much change there will be in 2-3 years ?..You better run as fast as you can from where ever you are and find another place that deals with more than just bulls***...Cause that's exactly what your being fed right now where you are....just to be sure would you kindly give us a background of your diagnosis and treatments had or having and why that the Dr made the statement that she thinks 2-3 years left?
  • Sundanceh
    Sundanceh Member Posts: 4,392 Member
    #3
    Not Smaller - But BIGGER
    Hey Pat

    I'd upgrade to a full blown teaching hospital, where you can get better care - I did cancer centers and over time realized their idea of treating cancer was just to keep treating you and not curing you.

    And private cancer clinics are in the business of $$$ - a teaching hospital stays up on the latest advances and has the latest and updated equipment, which is a win-win for all involved. I made the switch after 5 years and a recurrence, nearly 2, and have not looked back - they are in my rear view mirror now.

    Buzzard already had you covered - but just wanted to add this. They told me I had about a year left a couple of years ago, so if that were true, then I am a "ghost writer."

    -Craig
  • kapper48
    kapper48 Member Posts: 85
    #4
    Buzzard said:

    Pat..................Run fast and far ........
    OK first of all CEA is a term known as Cryo-Embryonic-Antigens. The numbers go as follow...1-3 for non-smokers, 3-6 for smokers, and over 6 denotes some type of activity. It is though not a foolproof marker for all but it is reliable for more than most. I am 1.9 at the moment but I am with the reading of 1.9 showing no activity in which a 2.5 is telling you the same thing if its reliable for you, that there is no activity...

    Now, the statement.....

    "I have already been told that I have only 2-3 years left to live"

    Who have you talked with lately? Or, have you made the wife real mad ,cause there's not but one person that can possibly tell you that and its not your Dr. To many things change in the medical field way to quick for any body to even make a statement like that to tell anyone that they only have 2-3 years left. Do you know how much change there will be in 2-3 years ?..You better run as fast as you can from where ever you are and find another place that deals with more than just bulls***...Cause that's exactly what your being fed right now where you are....just to be sure would you kindly give us a background of your diagnosis and treatments had or having and why that the Dr made the statement that she thinks 2-3 years left?

    background
    I was diagnosised in march of 2008 with stage 3 colon cancer, I had 18 inches of my colon removed and did 6 months of folfox I can't spell the words but i do know that one of the drugs was so bad that i could only do 7 rounds and then was put on exloda that other drug i couldn't touch anything cold. Anyway I finished all my treatments in Oct. of 2008 and my Dr. said I was fine. I did 2 scans 1 in Jan. and 1 in April of 2009, they both came back neg. so we thought we had it beat. Then in June of 2009 I started having problems going to the bathroom again and I knew it was going to be bad. So i went in for another colonoscopy and the cancer had come back really pissed. I was told that I would have to have my entire colon removed, the cancer had spread all over my colon and a small spot on my small intestine and there was a tumor the size of my fist in my pelvic. So I did the surgery and my surgeon said I had a better chance of never getting cancer again. So I go back to my onc. and she tells me I am now stage 4 and not curable. My cancer is called signet ring cell,they tell me it is very aggressive and rare and that is why she told me 2-3 years. I have done some research and have found nothing positive about this type of cancer. I feel like I am just waiting for it to start back up sagian and do its thing. I am now on fofluri not sure how to spell that. I was getting avastin up untill about 1 1/2 months ago and eneded back in the hospital with a blood clot so she took me off of that drug and put me on cumadin.She also tells me i will be doing chemo for the rest of my life, can't imagine that but for now i will continue to do it. Thanks Buzzard for replying I sure am havinga hard time with all this.
    Pat
  • kapper48
    kapper48 Member Posts: 85
    #5
    Sundanceh said:

    Not Smaller - But BIGGER
    Hey Pat

    I'd upgrade to a full blown teaching hospital, where you can get better care - I did cancer centers and over time realized their idea of treating cancer was just to keep treating you and not curing you.

    And private cancer clinics are in the business of $$$ - a teaching hospital stays up on the latest advances and has the latest and updated equipment, which is a win-win for all involved. I made the switch after 5 years and a recurrence, nearly 2, and have not looked back - they are in my rear view mirror now.

    Buzzard already had you covered - but just wanted to add this. They told me I had about a year left a couple of years ago, so if that were true, then I am a "ghost writer."

    -Craig

    Ghost writer
    Craig thanks for replying to my post, I have read many of your comments and have found some of them very funny, We need a person like you to cheer us all up and you do a very good job of that,so don't ever stop. I am going to look into some other places to go this week. again thanks craig
    Pat
  • k1
    k1 Member Posts: 220 Member
    #6
    Your treatment center IS a teaching-research hospital
    Just wanted to reassure you that you are getting treatment at not only one of the United States' National Institutes of Health Comprensive Cancer Center hospitals but also one of the finest and most famous research and teaching hospitals in the country, cancer wing of Barnes Jewish Hospital at Washington University in St. Louis. It is consistently ranked right up there with Mayo Clinic, M.D. Anderson, Cleveland Clinic etc.

    I wish that I lived close enough to one of those centers to get the quality of care available to you there in St. Louis! We took a member of my family there for treatment for over a year although it nearly bankrupted my relatives due to the distance (nine hours each way) that had to be traveled. They have pioneered many medical technologies and have an impressive record and in fact had the best success record in the country for the procedure my relative had.

    As I posted a few days ago to someone else's question about where to go, when you go to a big, high tech research cancer hospital such as the NIH designated Comprehensive Center, you do get more advanced care and the opportunity to participate in the latest clinical trials and they have the high tech surgery available etc. That's great, especially if you live close enough that it doesn't involve a lot of expense for travel...

    BUT the downside is that it's often less "personal" and can feel like a cattle call too. You see a lot of different people in the course of care, even in one visit, there are medical residents trailing around checking you out along with your doctor, and they do lots more monitoring and testing etc. Bureaucracy abounds. Bottom line is they don't take as much time with each patient on a personal level. It sounds like that is what you are experiencing with your questions not getting answered. It can really help to get information before you go so you can ask better questions too, like what you are doing now.

    The other alternative is to go to a smaller place like a private oncologist practice. There you might get more personal attention, but you might not get the latest technology available or the latest cutting edge treatments or clinical trials. Still sometimes you just need to feel like somebody cares!

    Where to get treatment is a choice you have to make and you have to do what you think is best for you personally, what your comfortable with, and realize the advantages and disadvantages of each type place. For you, at least, the expense of travel to a really fine treatment center doesn't have to enter into that decision since you have one available locally -- most of us are not in that position. But still, no matter how highly it's ranked and how good their outcomes at a specific teaching-research institution that doesn't matter if it's not the right place for you personally and not meeting your needs.

    Good luck!
    K1
  • lisa42
    lisa42 Member Posts: 3,625 Member
    #7
    it's the Dr., not the cancer center
    Hi Pat,

    I always get so upset when I hear someone with cancer say that their doctor or a nurse has told them "you have ___ months (or years) left to live". I don't know anything about where you're getting your treatment, but apparently someone who just commented does. Perhaps it's not the place where you're getting treatment that's a problem, but your particular doctor that you've dealt with (or whoever it was that told you that you have 2-3 years to live). I know of a particular large cancer center/teaching hospital near me & one person's experience with a particular oncologist there was like night and day compared to a different oncologist that worked at the same place. One gave a lot of hope and was very encouraging- the other was a real downer and gave no hope to this person.
    Can you possibly change doctors within the same place? If not or if that would be too awkward (but who really cares about being awkward), maybe it would be good to check out other places and other oncologists and/or surgeons.

    Just because "you're now stage 4" does not give you the instant death sentence! I am so glad that I've never been told "you have ___ amount of time left to live". I was stage IV right away when I was diagnosed in August 2007 & I'm still here! My husband DID get told back right after I was diagnosed that if I hadn't come in when I did and start treatment when I did, that I would have probably lasted just another 4 months. But that was IF I hadn't come in and started treatment, which I DID! I've been told the "chemo for life" thing too. That is hard to take, I know.
    We're here to prove those doctors wrong!!! As hard as it may be, DON'T blindly believe what you were told- take the position of fighting hard against the cancer to prove them wrong! Craig and Phil are two examples of people who have been in the fight for several years now as stage IV. I know that may not be encouraging to think that you might still be fighting and taking chemo years from now, but then again, that may not be your case- you might just become completely NED!! I worry that you won't get the NED status, however, if your treating doctor is expecting you to die in 2-3 years. It's important to find a treating doctor who is willing and wanting to unturn every stone possible in CURING you!! The idea that a stage IV diagnosis is an automatic death sentence is really going by the wayside and is becoming outdated as more and more treatments are popping up.

    I've been on chemo regimens three times now (four, if you include the chemo I took along with radiation) & finally this past November, my cancer starting progressing again even while on chemo (Folfiri and Avastin). That was the last approved treatment- I had done all of the others already. So, it was time to look into either a clinical trial of some sort or some kind of other treatment. I researched and ended up going on a fairly new "off market" treatment of lovastatin and interferon, given by Dr. Stephen Cantrell in Nashville, TN. I've been on it since Dec. 4th. I don't know how it's working yet, so I can't tell you that yet, but I am very optimistic and hopeful. Some amazing stories have come out of that office (Neoplas Innovation) of people who's cancer was advancing while on chemo, even some who were ready to go into hospice care, then started having their tumors shrink on this treatment. I've heard of a few who became NED. Dr. Cantrell himself was told 9 years ago that he had 6 weeks left to live. He experimented on himself and ended up making his cancer go away. He continues today on a maintenance dose of the treatment. I'm due for a scan around Feb. 12 to see how it's working in me. If you're interested in checking it out, the website is: www.neoplas.org It certainly couldn't hurt to check it out, maybe even give them a call and see if they will look at your records and most recent scan to see if you might be a candidate for that treatment.

    Never, never give up- there ARE other treatments out there if you look. Don't settle for a doctor that says "there's no more we can do".

    Take care and keep the chin up-
    Lisa

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