• Stage IV colon cancer diagnosis, no mets to major organs so far, but still given a poor prognosis?

    Asked by blueorchid on Tuesday, April 24, 2012

    Stage IV colon cancer diagnosis, no mets to major organs so far, but still given a poor prognosis?

    My mother is 51 and was diagnosed with stage IV colon cancer. Last month she had a bowel resection, and had some omentum, and a nodule on her belly button removed. She feels better than she has in years. Our first visit with the oncologist was yesterday, and she told us that if there is any cancer left in the abdomen that the surgeon didn't get, it would mean the chemo would be to prolong her life, and she would live about 2 years. Even on the first CT, there was no sign of cancer in any of her major organs, and she had a CT chest after that, that showed no signs of cancer at all. How can someone with no mets to major organs, 1 out of 13 lymphnodes infected, etc get the same poor prognosis as someone with mets to major organs? Oh yeah, and her CEA is 5.6! Can anyone help me out here?

    5 Answers from the Community

    5 answers
    • abrub's Avatar

      Ignore the numbers. I know lots of stage IV colon cancer patients doing well many years later. I'm stage IV, and was also told 2 years, max 5 years, by one dr. I'm past 5 years now, and doing great; most likely cancer-free. Cancer was all over my omentum, encompassed my ovary, and was on the outside of my colon in several places (triple resection.) No lymph nodes affected.

      Your mom might want to consult another dr - if she can get to a cancer specialty center, that might be the best.

      over 4 years ago
    • ttisme's Avatar

      first of all, let me share. I had 2 of 16 nodes affected, with my bowel resection. And I was classified as a stage 3. My scans post surgery and pre treatment were clean. No signs of cancer from head to hips. I try not to suggest researching, but at times it can be our best friend. Stay on sites that are medically sound. My Onc said that their could be a spot that could not be detected via scan, but treatment would take care of it...I was never given an expiration date. OH and my CEA remains elevated due to life circumstances...your mom's is within the normal range.

      The staging for nodes and stages can be found on the Amercian Cancer Society webpage. What you've been told so far does not make sense. Go look it up for yourself.

      Second, any ONC that is going to give you a date, is not worth their weight, so find another.

      Third, statistis on survival rates are atleast 10 years old. Before new drugs were introduced to the treatment regime. So they really can not be applied to our situations.

      Like Abrub said, there are lots of survivors with stage 4 colon cancer. My Immerman Angel is a 15 year survivor and that was before all the drugs I have received in Chemo.

      hang in there

      over 4 years ago
    • Betty1948's Avatar

      I have an amazing (diagnostic) GP who immediately knew what my
      neck mass meant, but sent me for a CT Scan and then biopsy. When my SQUAMOUS CELL CARSIMONA was confirmed, he sent me to a really "engaging" Oncologist who he said "He will not lie to you!" I am just diagnosed and start Chemo Monday (got my PICC Line yesterday). I found it interesting when my Oncologist said "The new Chemo drugs are so amazing that when you get them **if** there are any cancer cells floating around, or just starting to grow elsewhere, the drugs will just zap those cells into oblivian." My Oncologist says that his field is moving at warp-speed and what drugs in Oncology used 2 years ago are obsilite and in two years, the treatments being used now will be obsilite. The enthusism and encouragement he projects is amazing. I feel a positive attitude in both Oncologist AND patient is key to long-term recovery.

      over 4 years ago
    • CherylHutch's Avatar

      As the others above have said... there are many of us who are Stage IV and we are still around to talk about it. There are many who are not on treatment of any kind right now, and some of us who are and probably will be for the rest of our lives. But if we all look around at family and friends... many of them are living with permanent illnesses (IE: Diabetes) where they are being treated and probably will be for the rest of their lives... but we don't all freak out about that. Diabetes can be a killer, so can cancer... but like any disease, some can survive it and some succumb to it... and there's really no explanation why/who does what.

      Now, not to be a Debbie Downer, but I also like to look at things realistically, understand the odds, understand the options out there and then I go into my little world of denial so I can live my life the way I am comfortable living it :)

      @betty... I'm not sure which chemo drugs your Oncologist said that were being used 2 years ago and are now obsolete, and the drugs that are being used now will probably be obsolete in 2 years. That might be so with some cancers, but if we are talking colon/colorectal cancer, the drugs they've been using for the last 5-6 years (since I've been diagnosed) are pretty much the same as they've always been and none of them are obsolete. They are the standard protocols and yes, they are pretty amazing drugs/chemos. I know one of them is fairly new, new in the last 2-3 years and I don't want to mention the name because with my chemo brain, I might actually pick the wrong one and then that will start a little flamewar ... so I'll stay quiet on naming any right now ;)

      I was diagnosed in Dec 2006 at age 51 (same as your mother) as Stage III. A few months later, after a CAT scan, they found very very small nodules in my lungs... which made me a Stage IV. Stage IV is when the cancer has actually spread to another organ from the primary and in my case, it is the lungs. I was being particularly brave (and terrified at the same time) and I INSISTED on my oncologist giving me my prognosis. She didn't want to and said it isn't something that anyone can be sure of since everyone handles things differently, depending on age, health, and numerous other factors. Still I insisted... 20 years? 30 years?? She said that with statistics being what they were and what experience she has had with her patients... prognosis with the mets being in the lungs, it could be 2months - 2 years... and of course, give or take on either side of that. Well, my 2 years was up March 2010. I have just passed another 2 years on top of that and this December I will pass my 6 year mark.

      How am I doing? I think I'm doing pretty darn good! I AM having a problem with one of the tumors in my lungs pressing against my bronchial area/airwaves, making it difficult to breathe. I get breathless very easily, not to mention that heavy feeling in the chest. It also produces coughing in fits... so while I'm coughing, I'm also struggling for breath. But we have a plan... I start 5 daily sessions of radiation on Friday. The radiation will target this tumor, shrink it (and hopefully kill it) and voila, I will be able to breathe normally again :)

      I have two other tumors that are bad children and are growing despite the chemo I have been on to keep them under control. But they are not causing any problems at this time. So we will be keeping an eye on them and if they start growing too big or causing problems, then we will zap them too. We aren't rushing in to do that because with every radiation zap, it does damage some healthy tissue around them... so it's all about timing and keeping an eye on things... which every good Oncologist would be on top of. Once I finish my radiation and have a week off to recover, then back on the chemo we go to keep the others under control.

      So my advice to your mom is... do NOT panic. There are solutions for all problems that come up and the plan should be to tackle one hurdle at a time. Since she is Stage IV, it means the cancer is now systemic. Little cancer cells are floating around in her system... where they will land, IF they even land, no one knows. When they do land and set up home, as good as our technology is right now, none of our scans (CAT, PET, MRI, etc) can detect the very small cells... or tell a cancer cell from a healthy cell. But look at the bright side... they have caught hers (and ours) so we KNOW what we are dealing with and can have it treated. There are so many folk out there who have cancer but don't have symptoms, so don't even know they have it... hence, it is not being treated. By the time it acts up, or they notice any sort of symptom, it might be too late. But for now, all of us under treatment, have a shot at just living life like it was meant to be lived... and we just get treated for each obstacle or hurdle that comes up :)

      Cheryl in Vancouver, BC

      over 4 years ago
    • tugger's Avatar

      I guess once cancer has been spread via abdomen , aka pixie dust its just a manner of when . I myself have the concept of abdominal washing on my mind

      about 4 years ago

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