Questions to Ask

bruins1971
bruins1971 Member Posts: 227
edited March 2014 in Colorectal Cancer #1
Ok guys as you know I am new to this site. I am actually blown away by all the information in here and thought I was under control of my stuff but now I think I am not. I will be getting my 11th round of chemo Tuesday then a three week break due to New Years Eve. Then I am to have a CT scan 4 weeks later and if that shows anything then a Petscan to look further. I know I am going to ask to have my CEA number tested as I have not seen a number since late September although I am not sure how my number effects me as mine was never high to start only 26 at it's highest and this with two tumors in my liver, it's now 1.8 or at least it was in September. What are some of the questions you all have asked your oncologist to stay on top of things. I really need to start keeping a better track of things but please help me to understand the most important things I need to be concerned with. I have been going along thinking ok my white and red blood counts are fine and my CEA number is within the normal range so the chemo must be kicking the cancers **** and I am going to be cancer free soon. My oncologist tells me that in his eyes I am cancer free now that the tumors where removed in August. Now we are doing the chemo to go after the microscopic cells that we cannot see if any. Please advise with what you feel is important.

Thank you very much....
Bobby in Dallas

Comments

  • Buckwirth
    Buckwirth Member Posts: 1,258 Member
    #2
    Pet/ct
    Bobby,

    You should be able to get the ct and the pet at the same time. I know I always have. You may have to go to a different imaging center, but seems to me to be well worth it.
  • nudgie
    nudgie Member Posts: 1,478 Member
    #3
    Hello.
    I was DX in 2006 with stage II Colon Cancer and completed all treatments and surgeries in 2007. During DX, treatments, mishaps and surgeries, I kept, and still do, a 3-ring binder of all my CT Scans, bloodwork, pathology report, colonscopies, etc., for my reference as well as for my other doctors.

    I would ask your Onc and Primary Doc what their course of action / treatment is for someone in your shoes. Meaning, What type of cancer do you have, what stage are you and what is the industry standard (treatment) for that particular type of cancer? What is their follow-up treatment plan; scans, bloodwork, colonoscopies, etc.,

    Then, once you have received their plan, you need to determine if it works with you since you are the only one that KNOWS your body and how you feel. Taking charge of YOUR HEALTH is the most important step in your treatment plan. Leaving it in the hands of the doctors is not always the best decision or move. They are only following "industry standards" and stats.

    When I finished my treatment (2006), I had a CT Scan and Bloodwork done every 3 months for the first 2 years. 3 - 5 yrs, I have CT Scans and bloodwork done every 6 months or twice a year. Colonoscopy was done in 2006, 2007 and 2009. Next one will be in 2011.

    In addition, if you do not understand the language of your Scans, have your Onc explain it to you in terms you can understand.

    I asked so many questions during my journey I felt like I was back in school.
  • bruins1971
    bruins1971 Member Posts: 227
    #4
    nudgie said:

    Hello.
    I was DX in 2006 with stage II Colon Cancer and completed all treatments and surgeries in 2007. During DX, treatments, mishaps and surgeries, I kept, and still do, a 3-ring binder of all my CT Scans, bloodwork, pathology report, colonscopies, etc., for my reference as well as for my other doctors.

    I would ask your Onc and Primary Doc what their course of action / treatment is for someone in your shoes. Meaning, What type of cancer do you have, what stage are you and what is the industry standard (treatment) for that particular type of cancer? What is their follow-up treatment plan; scans, bloodwork, colonoscopies, etc.,

    Then, once you have received their plan, you need to determine if it works with you since you are the only one that KNOWS your body and how you feel. Taking charge of YOUR HEALTH is the most important step in your treatment plan. Leaving it in the hands of the doctors is not always the best decision or move. They are only following "industry standards" and stats.

    When I finished my treatment (2006), I had a CT Scan and Bloodwork done every 3 months for the first 2 years. 3 - 5 yrs, I have CT Scans and bloodwork done every 6 months or twice a year. Colonoscopy was done in 2006, 2007 and 2009. Next one will be in 2011.

    In addition, if you do not understand the language of your Scans, have your Onc explain it to you in terms you can understand.

    I asked so many questions during my journey I felt like I was back in school.

    Congrats
    First of all I would like to say Congrats on being a cancer survivor. Beating this terrible disease is something to be proud of. I know you have been clean from 2007 which makes you coming up on 4 years clean and that's awesome. I am sure that you will find even more peace when you hit that 5 year mark. I am just finishing up my treatment plan of 12 rounds of chemo with already having had my colon surgery in March and liver surgery in August. I know that in most cases stage 4 tends to drag on for years but I am hoping and praying that this will not be the case with me. I am staying positive and not claiming this cancer. I look at it as if right now I am cancer free since they removed the one tumor in my colon and two tumors in my liver. I know my petscan back in April showed the cancer had only spread to the liver which was awesome. Also I know I will be having my next colonoscopy in March for my one year follow up. My Onc is Dr Henry Xiong who was a lead researcher at MD Anderson in Houston which is one of the best cancer treatment centers in the world. He moved to Dallas to run the center here as he wanted to be working more with patients rather than research. So I trust him to know the top things of how to beat this cancer and if he needed any help I know he has contacts back at MD Anderson of any breaking drugs or treatments available. Again congrats on being cancer free I pray you will stay that way and use your knowledge of what you went through to help others like myself to beat cancer as well.

    Merry Christmas
    Bobby In Dallas
  • John23
    John23 Member Posts: 2,122 Member
    #5
    bruins1971 said:

    Congrats
    First of all I would like to say Congrats on being a cancer survivor. Beating this terrible disease is something to be proud of. I know you have been clean from 2007 which makes you coming up on 4 years clean and that's awesome. I am sure that you will find even more peace when you hit that 5 year mark. I am just finishing up my treatment plan of 12 rounds of chemo with already having had my colon surgery in March and liver surgery in August. I know that in most cases stage 4 tends to drag on for years but I am hoping and praying that this will not be the case with me. I am staying positive and not claiming this cancer. I look at it as if right now I am cancer free since they removed the one tumor in my colon and two tumors in my liver. I know my petscan back in April showed the cancer had only spread to the liver which was awesome. Also I know I will be having my next colonoscopy in March for my one year follow up. My Onc is Dr Henry Xiong who was a lead researcher at MD Anderson in Houston which is one of the best cancer treatment centers in the world. He moved to Dallas to run the center here as he wanted to be working more with patients rather than research. So I trust him to know the top things of how to beat this cancer and if he needed any help I know he has contacts back at MD Anderson of any breaking drugs or treatments available. Again congrats on being cancer free I pray you will stay that way and use your knowledge of what you went through to help others like myself to beat cancer as well.

    Merry Christmas
    Bobby In Dallas

    Of Interest
    Of Interest

    Henry Q. Xiong, MD, PhD

    Quite impressive!

    Best of health,

    John
  • bruins1971
    bruins1971 Member Posts: 227
    #6
    John23 said:

    Of Interest
    Of Interest

    Henry Q. Xiong, MD, PhD

    Quite impressive!

    Best of health,

    John

    Thanks John
    Yes he is very impressive and he easily impressed me the most of the three oncologist I met with when I was first diagnosed back in March.

    Wishing you a happy holiday season and here's to a better 2011 than 2010

    Bobby in Dallas

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