Newly diagnosed Stage 3 rectal cancer

2»

Comments

  • ksue59
    ksue59 Member Posts: 9

    Don't want to overwhelm you but...
    Ksue59,

    You are at a very critical point in your care ~ are you being treated at a National Cancer Institute or just a local clinic/hospital. The reason I state this is that I don't like all the unknowns that you speak about in your last statement. I know this journey can be so overwhelming but you must take control of having the best of the best Drs., surgeons, etc. in your corner. From your statements above, I would question them. I don't understand why they did not treat you with chemo and radiation prior to operating...I had the same diagnosis as you and the National Cancer Guidelines usually recommend chemo and radiation prior to surgery??? I was only "49" when diagnosed and you appear to be young as well. I am not saying this to scare you but I want a positive outcome for you and you must be aware of your care. I was fortunate enough to have a daughter who is a Dr. and kept my best interest at hand.
    God bless you my dear. "Minnie"

    What do I question?
    I have questions but about my treatment,I want to question my diagnosis, but not sure how without coming across like i doubt my surgeon...
  • Minnesotagirl
    Minnesotagirl Member Posts: 141
    ksue59 said:

    What do I question?
    I have questions but about my treatment,I want to question my diagnosis, but not sure how without coming across like i doubt my surgeon...

    Suggestions
    Ksue59,

    First, of all, did you review the Cat scan or petscan with your surgeon prior to surgery? I would ask the surgeon to pull the scans up and show you exactly where the cancer was...colon or rectal area. They should be able to circle the area that they were concerned about that led you to surgery and tell you where in the colon/rectal area it was.
    Second, I would ask when they tatooed you inside the colon or rectum for surgery, why didn't they know at that point when they marked you, whether it was colon or rectum, and why was she/he unable to find the tatoo if you didn't have radiation???
    I think once you are given straight answers from the surgeon clarifying how everything jumped around so much, you will feel better about your diagnosis.
    Third, when you see your oncologist or surgeon, I would ask to have a Lynch Syndrome test done to see if it could be a hereditary thing that could be passed onto your children. My oncologist did not suggest this test to me, but actually my surgeon did and I had it done. I guess the cost can be $1000.00 for that test, but, my insurance covered it and my results were negative for that. Very important test if you have children.
    Fourth, I would question why they felt the tumor was so small. Before I had surgery, they knew the size but just couldn't tell me how far it had passed through the different linings / walls in the rectum or how many lymph nodes were positive. When you had your CT or pet scan, did any lymph nodes light up?
    Just remember, you paid this surgeon (or your insurance did) a hefty price to have the best care possible, so don't be afraid to ask and share your concerns. You have a right to know!
    I hope you understand a little of what I am trying to say...wish I lived closer to you and I would go with you to the scheduled appointment but that can't happen so this is the best I can offer. Everything will be o.k. and pretty soon you will sharing information on this board about your story and helping someone else in the process~
    "Minnie"
  • ksue59
    ksue59 Member Posts: 9

    Suggestions
    Ksue59,

    First, of all, did you review the Cat scan or petscan with your surgeon prior to surgery? I would ask the surgeon to pull the scans up and show you exactly where the cancer was...colon or rectal area. They should be able to circle the area that they were concerned about that led you to surgery and tell you where in the colon/rectal area it was.
    Second, I would ask when they tatooed you inside the colon or rectum for surgery, why didn't they know at that point when they marked you, whether it was colon or rectum, and why was she/he unable to find the tatoo if you didn't have radiation???
    I think once you are given straight answers from the surgeon clarifying how everything jumped around so much, you will feel better about your diagnosis.
    Third, when you see your oncologist or surgeon, I would ask to have a Lynch Syndrome test done to see if it could be a hereditary thing that could be passed onto your children. My oncologist did not suggest this test to me, but actually my surgeon did and I had it done. I guess the cost can be $1000.00 for that test, but, my insurance covered it and my results were negative for that. Very important test if you have children.
    Fourth, I would question why they felt the tumor was so small. Before I had surgery, they knew the size but just couldn't tell me how far it had passed through the different linings / walls in the rectum or how many lymph nodes were positive. When you had your CT or pet scan, did any lymph nodes light up?
    Just remember, you paid this surgeon (or your insurance did) a hefty price to have the best care possible, so don't be afraid to ask and share your concerns. You have a right to know!
    I hope you understand a little of what I am trying to say...wish I lived closer to you and I would go with you to the scheduled appointment but that can't happen so this is the best I can offer. Everything will be o.k. and pretty soon you will sharing information on this board about your story and helping someone else in the process~
    "Minnie"

    Thank you....
    No I never saw the CT scan The doctor who tattoed me said the cancer was in my colon and I remember him saying he tattoed extensively so the surgeon could find the cancer. Also when the doctor spoke to me after the surgery and said she couldnt find the markers and had a hard time feeling the tumor but the tumor was mostly in rectum. She ultimitely changed the diagnosis to reflect rectal cancer.. She said b4 surgery she was taking 12 nodes but after seeing tumor took 20. they always maintained it would b stage 1-2 and it would be fine...I never questioned ....I want to Thank you for your support..I will take your information with me to my apot...God Bless
  • herdizziness
    herdizziness Member Posts: 3,624 Member
    Karen
    Always feel able to discuss any concerns with your oncologist, and if he/she doesn't address your concerns to your satisfaction, then find another one. You may find you have the exact oncologist you need on your first appointment (I liked mine and still have him) but if you aren't comfortable with him/her, go find another one that you can be comfortable with and trust. My best to you.
    Winter Marie
  • ksue59
    ksue59 Member Posts: 9

    Karen
    Always feel able to discuss any concerns with your oncologist, and if he/she doesn't address your concerns to your satisfaction, then find another one. You may find you have the exact oncologist you need on your first appointment (I liked mine and still have him) but if you aren't comfortable with him/her, go find another one that you can be comfortable with and trust. My best to you.
    Winter Marie

    today I see the surgeon
    I meet my Oncologist on Tuesday, I look forward to meeting her..I do like my surgeon who I see today. I do have questions as to why my cancer findings took the twist it did but no one said cancer wasn't fickle....I dont want to seem like I blame my surgeon [I dont ]I think If she were to explain it to me I will feel better...Thats what I want...I need to let go of this cloud over me so that I can go forward..I Thank everyone who has been here for me with all of your support. I take all of your expertise with me to my apot today...God Bless...