ATTENTION: wisdom/suggestions for crc patients

Phil64
Phil64 Member Posts: 838 Member
edited January 2013 in Colorectal Cancer #1

I know there is a ton of knowledge on this netwrok! And I hope that others will try to distill some knowledge that just might help other crc patients with there battle against cancer! In my case I have learned a couple important things that I'd like to share with others -- and I hope that these couple things might actually help someone.

 

1. I was diagnosed with stage IV crc in June of 2012.  I had a primary tumor on the colon removed (colon resection) and a metastisis on the lung removed in May/June last year. The CT Scans showed all other organs clear.  HOWEVER, the CT Scan was not reliable.  After receiving chemo and watching my CEA climb during and immediatly after completing chemo the onc at U of Michigan Cancer Center ordered several tests as he was convinced I was facing a reoccurence of cancer.  He orderd an MRI of the liver and a PET scan. 

While the CT showed a healthy liver, the MRI of the Liver showed two larger tumors and three smaller tumors in the liver! The tumors were likely growing in the liver all along!  And I underwent 11 treatments of FolFox when I might have received a liver resection first had they done the MRI of the liver as part of the baseline checking! As it turns out I'm not eligible for surgery now because we found these tumors too late... 

 

LESSON: Make sure they do an MRI of the liver as part of the initial baseline checking!  Don't believe the CT scan alone.  If I had it to do over again I'd insist on a CT, PET, and MRI of Liver, adomin, and pelvis as part of the initial checking -- BEFORE any surgeries! 

 

2. I was seeing doctors for another condition / issue and I mentioned that I had fluid / blood in my stool on occasion.  And the doctors said it is probably just hemroids.  Finally after months passed the doctor ordered a colonoscopy.  And the colonoscopy found the primary crc tumor. Who knows if they had found the tumor sooner maybe I could have had a different prognosis???

 

LESSSON: If you are encountering ANY symptoms the colonoscopy is a relatively easy way to make sure that crc is not an issue.  Also, DON'T IGNORE symptoms (like me and a lot of other men).  Finding out sooner than later can be a big difference in your prognosis!!!

 

I'm sure others have many experiences that might be translated into some practical advice / knowledge for crc patients!  Let's post them...

 

Comments

  • Coppercent
    Coppercent Member Posts: 158
    #2
    Gut Instinct

    My best advise when asked by new cancer patients is go with your gut instinct.  And interview your medical team.  My oncologist still makes comments to this day how he felt like he was on a job interview after our first meeting.  I knew I was in for the fight of my life and wanted to make sure I had the best team possible.  One that shared my end goal. I never look back because you can't change the past.  Only improve the future.

  • dmj101
    dmj101 Member Posts: 527 Member
    #3
    Valuable INFO

    It never ceases to amaze me the things we learn as we go along.. I hope these facts help someone..

    My Lessons Learned :

    • Never put off a Hemoroid as being nothing
    • Pay attention to the side effects of every treatment or drug and food you consume:
      • my crc may have been brought to me thanks to the Radioactive Iodine I took as Thyroid cancer treatment
      • Antioxidants - While they are healthy and seem harmless - Many interfere with the absortion of medications - altering the effectiveness of medications.
    • CEA may not be a reliable source of knowledge
    • No scan is 100%
    • Say a prayer every morning for a peacefull day and another every night in thanks for another great day!

     

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    #4
    Both of these are very good comments...

    the CT scan failed in my case as well.  But it's been tough getting the PET scans covered.  I basically had to threaten to sue (after pointing out that I had literally almost died because of their failure to use the PET even after they KNEW that I had cancer and KNEW that the CT wasn't picking it up) to get my HMO to approve them.   But now I get the PET/CT every time and no one says boo about it.  Plus you have no idea how many doctors assured me that I didn't have cancer before I got diagnosed, despite my obvious symptoms and the fact that my sister had died from it just four years previously.  Guess I showed them.  AA

  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #5
    More

    Never be afraid to ask any question...there are no "dumb" ones.

    Never be afraid to seek a second, third, etc. opinion if you feel that there may be a better choice for you out there.

    Never be aftaid to "fire" your doctor or medical team, if they are not fighting for you as hard as you are.

    Never assume that your doctor has all the answers or that he/she knows everything there is to know.  Just make sure you have one who is willing to consider any information you bring to the table.

    Never forget that you need as much information as you can get before determining a course of action.

    Never forget that YOU are the one who should be making the decisions regarding medical care choices.  It is after all YOUR LIFE.

    Remember, as long as you make decisions based on best medical knowledge, you must never second guess that decision after the fact.

    Remember that each human being is unique and that even with the "same" cancer and treatments, results can vary.

     

    Marie who loves kitties

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #6
    what a great post

    the post and every reply invaluable.

    what can i add besides "never say die" and never give up.

    now that implies a mature acceptance that we are all mortal whatever happens with our illness. our death inevitable, but how we approach death up to us.

    sorry but I cannot discuss stage 4 without the immediate association of incurable illness.

    I am grateful for my joyful life and my dream of peaceful death whenever its time. when it happens, it is simply the right time.

    to seek out a deep love and joy of daily life while having a challenging illness.

    so besides these suggestions above which focus of therapy or doctor type discussions, I am focused on our spiritual and mental approach to this illness.

    hugs,Pete

  • PhillieG
    PhillieG Member Posts: 4,866 Member
    #7
    Why are Phil's always so Smart!

    It's all very good advice Phil. Doctors are people, people make mistakes. There's never anything wrong with questioning what you're being told. If the doctor is resentful because you asked, then maybe they're not the right doctor for you.

    A CT scan will only give so much information. It's like looking at the stars with the naked eye. You can only see so much. Having a telescope will give you much greater detail. 

    I think it's pretty safe to say that all of us, looking back in time, can find an ah-ha moment where if we had acted then we might have caught things sooner.

    My advice would be to start with the best doctor/facility that you can get...

  • pete43lost_at_sea
    pete43lost_at_sea Member Posts: 3,900 Member
    #8
    PhillieG said:

    Why are Phil's always so Smart!

    It's all very good advice Phil. Doctors are people, people make mistakes. There's never anything wrong with questioning what you're being told. If the doctor is resentful because you asked, then maybe they're not the right doctor for you.

    A CT scan will only give so much information. It's like looking at the stars with the naked eye. You can only see so much. Having a telescope will give you much greater detail. 

    I think it's pretty safe to say that all of us, looking back in time, can find an ah-ha moment where if we had acted then we might have caught things sooner.

    My advice would be to start with the best doctor/facility that you can get...

    Why are Phil's always so Smart!

    ?

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