I am confused

jmaddox915
jmaddox915 Member Posts: 80 Member
edited March 2014 in Colorectal Cancer #1
To give a quick history, I am 39 yrs old and dx in July with Stage IV colon cancer. According to my onconlogist, it had spread to my abdomen area, lungs, lymph nodes in my neck and a quarter size spot on my liver. She told me I have too much "disease" to operate on so I started Folfox 6 with Avastin (Avastin started in Oct. Had to wait for my colon to heal from the surgery I had in August).

I had my first CT scan and according to my doctor it showed no spread of disease compared to my original CT scan back in July but no shrinkage either. It also showed a large cyst on my left ovary. She asked me to have it checked out with my ob\gyn to be on the safe side.

Ok..this is where I get confused. The cancer center faxed over the CT results to my ob\gyn. When he asked me what I had cancer wise, I explained to him what I had been told. He looked confused and said according to the CT results, there are no masses in my abdomen and my lymph nodes are not enlarged.

I praise God and give him the Glory that the cyst that was suppose to be there was not. He couldn't find anything on the ultrasound. He checked multiple times to be sure.

So my question is, what am I suppose to think about his comments concerning the abdomen area? I know he is not an oncologist but he is a doctor and knows how to read CT results.

At this point, I don't feel like I know the extent of my cancer. I have an appointment on Nov 9th and I plan to be very frank with my doctor to make sure we are on the same page.

Comments

  • PGLGreg
    PGLGreg Member Posts: 731
    #2
    Maybe get radiologist's report.
    Reading what you've written, I find myself just as confused. I don't see how to reconcile the different opinions. After I have a CT scan, I get the radiologist's report, in the form of a 2 page letter. (I've never seen the actual scan.) Maybe you could request a copy of the radiologist's report, by way of clarifying the situation.

    --Greg
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #3
    PGLGreg said:

    Maybe get radiologist's report.
    Reading what you've written, I find myself just as confused. I don't see how to reconcile the different opinions. After I have a CT scan, I get the radiologist's report, in the form of a 2 page letter. (I've never seen the actual scan.) Maybe you could request a copy of the radiologist's report, by way of clarifying the situation.

    --Greg

    Hi Greg,
    I have the two page
    Hi Greg,

    I have the two page report. My ob\gyn gave me a copy today and went over with me. That is why I am so confused. I am taking it with me to my appointment on Monday.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #4
    PGLGreg said:

    Maybe get radiologist's report.
    Reading what you've written, I find myself just as confused. I don't see how to reconcile the different opinions. After I have a CT scan, I get the radiologist's report, in the form of a 2 page letter. (I've never seen the actual scan.) Maybe you could request a copy of the radiologist's report, by way of clarifying the situation.

    --Greg

    Insist on a PET scan or find another Oncologist quick...
    or both..Don't be jerked around. Have a PET scan done and then decide what route you want to take remember, you are the advocate for your treatment. The choice is yours entirely...
  • John23
    John23 Member Posts: 2,122 Member
    #5
    Get another opinion.
    Do yourself a big favor, and locate a gastrointestinal specialist,
    and a surgeon specializing in colon cancer. Make sure they
    are no part of the same "group" that your present doctors are.

    You need - absolutely need - a second and third opinion. You owe
    that to yourself and your family. Get the appointments as soon
    as you can, and don't worry about having to cancel your "other"
    appointment.

    You didn't say how many lymph nodes were removed for analysis,
    or what the ratio was of infection, or aside from the CT, how else
    they determined the extent without a biopsy.

    Stop worrying (if you can force yourself), and get appointments.
    Let the "new crew" take a peek at it all.

    With any surgical, or life changing medical event, you should
    always have a second and third opinion.

    Good doctors welcome their peer's opinions.


    Good luck.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #6
    John23 said:

    Get another opinion.
    Do yourself a big favor, and locate a gastrointestinal specialist,
    and a surgeon specializing in colon cancer. Make sure they
    are no part of the same "group" that your present doctors are.

    You need - absolutely need - a second and third opinion. You owe
    that to yourself and your family. Get the appointments as soon
    as you can, and don't worry about having to cancel your "other"
    appointment.

    You didn't say how many lymph nodes were removed for analysis,
    or what the ratio was of infection, or aside from the CT, how else
    they determined the extent without a biopsy.

    Stop worrying (if you can force yourself), and get appointments.
    Let the "new crew" take a peek at it all.

    With any surgical, or life changing medical event, you should
    always have a second and third opinion.

    Good doctors welcome their peer's opinions.


    Good luck.

    Great rebuttal John, I couldn't have said it better myself
    :)
  • robinvan
    robinvan Member Posts: 1,012
    #7
    Be Very Frank!
    You should share all that the ob/gyn has told you. They are miles apart and that in itself is disconcerting. I gather you have not had a PET scan. I hope it turns out that your Onc has overestimated the extent of spread. You could do with a dose of good news!

    If you lose confidence in your cancer center, or need a second opinion, put the word out here and you will get sume advice on other options in your area.

    Waiting and praying with you through Monday.

    Rob; in Vancouver

    BTW... cute picture!
  • jmaddox915
    jmaddox915 Member Posts: 80 Member
    #8
    robinvan said:

    Be Very Frank!
    You should share all that the ob/gyn has told you. They are miles apart and that in itself is disconcerting. I gather you have not had a PET scan. I hope it turns out that your Onc has overestimated the extent of spread. You could do with a dose of good news!

    If you lose confidence in your cancer center, or need a second opinion, put the word out here and you will get sume advice on other options in your area.

    Waiting and praying with you through Monday.

    Rob; in Vancouver

    BTW... cute picture!

    PET Scan
    I had a PET scan before I started chemo. She said it would not be the right time to get a PET scan while I am still on chemo. She said they would use CT scans, etc to gauge how things are going.

    I am really new at this and dont' know what I need to be asking. When I had surgery on my colon they did take some lymph nodes but I don't know how many, etc.

    I have asked some of my other doctors about my oncologist and everyone said she is highly respected.

    I am so confused and not sure what to do. we did agree on a second opinion but she wanted to wait until we finished this first round of treatment.
  • Buzzard
    Buzzard Member Posts: 3,043 Member
    #9
    jmaddox915 said:

    PET Scan
    I had a PET scan before I started chemo. She said it would not be the right time to get a PET scan while I am still on chemo. She said they would use CT scans, etc to gauge how things are going.

    I am really new at this and dont' know what I need to be asking. When I had surgery on my colon they did take some lymph nodes but I don't know how many, etc.

    I have asked some of my other doctors about my oncologist and everyone said she is highly respected.

    I am so confused and not sure what to do. we did agree on a second opinion but she wanted to wait until we finished this first round of treatment.

    Here are some questions for almost anyone to ask
    Be sure you have someone take notes for you because you will only dwell on one thing that is said in dr appts. I don't know what that will be but I only remembered one thing for sure at each appt. of course Im over 50 so that may have some bearing on memory. anyway here are a few questions you can ask her next time...something else to think about, you said that you asked some of the other Drs about her and they all thought highly of her. Why heck yeah they would, first of all they are in the same town and Drs don't badmouth other Drs in the same town, its bad ethics, and secondly you said she was a woman ? What Dr in their right mind would say something bad about a woman, Dr or not, so the protection theory is there and the answer about her integrity good or bad would be tainted. It would behoove you to get a second opinion even if she was the top surgeon in the world, she may miss something that may be very beneficial to your treatment or good health. and any Dr worth their salt doesn't mind in the least for their patients to have a second opinion, unless they are afraid of something. Be your own advocate and do the things that are necessary for your piece of mind, The rest will follow...Bless you and good luck.Buzzard

    1. What stage am I considered to be.
    2. How many lymph nodes were taken out and did any show signs of cancer cells in them..
    3. What was actually taken out and what is the treatment regimen I am on.
    4. How long will my treatment regimen be for.
    5. What is your best professional opinion for long term prognosis
    6. Will NED ever be possible or will I be on maintenance chemo until something possibly arises.
    7. Will I ever be able to speak Chinese again ? (sorry, my attempt at trying to lighten the air a little)
    8. Would gratuities help in making up your mind about my treatment options.( sorry , tried again)
    9. What type of "normalcy" do you expect for me when this treatment regimen is over.
    10. Are you treating for a "cure" or just to keep it stable...

Discussion Boards