My brother John

JimN
JimN Member Posts: 10
edited March 2014 in Colorectal Cancer #1
Hi Again...I need your feedback. I'll try to be as brief as possible. I'm with my brother at the hospital who has recurring colon cancer. Just found out he has a massive tumor that is cancerous, on 2 lymph nodes and is in the wall of the stomach. His bowel is completely blocked. Nothing going into his colosomy bag. They are using an NG tube. I spoke to the surgeon yesterday and he said they will not operate because of the size. They're not sure if the oncologist will suggest chemo again or not. I have not spoken to the oncologist yet (not available). They are supposed to do a P.E.T. test to see where else it may have spread. Is this the final stage? How will I know? Who can talk to me about next steps, options or whatever else I should know? I always appreciate all of your honest feedback.

Comments

  • alihamilton
    alihamilton Member Posts: 347 Member
    #2
    Although I cannot give you much advice, I just had to respond to your post. I am SO sorry to hear about your brother. I read the post last night and it has bothered me ever since. I think you really need to speak to the surgeon and oncologist and tell them you need information. I know sometimes, the medical team seem reluctant to let us know all the facts but times have changed and we are all more knowledgable now. You and your brother have a right to know what his options are so that you can make decisions. That alone can give you more of a sense of empowerment. Do keep us posted and hang in there.
  • StacyGleaso
    StacyGleaso Member Posts: 1,233 Member
    #3
    Hi Jim,
    I think I recall responding to you about your brother some time ago. As far as the possibility of surgery being slim to none, don't be totally devastated. Several people who come here were told the very thing, and are able to control the spreading of the disease through medication and diet adjustments. The PET scan will be helpful to pinpoint exactly what is going on. I would not regard this as the "final stage" as advancements and new procedures arise daily. Listen to what the oncologist offers as options. Let your brother know he has a strong support system here that is virtually with him every step of the way.

    God Bless,

    Stacy
  • vanser
    vanser Member Posts: 100 Member
    #4
    Hi Jim,

    I am so sorry to hear about your brothers situation. I know what it feels like to have a family member affected by cancer, as my mom was diagnosed with Stage III in Jan 03.

    On a positive note, if you browse through many of the postings, there have been lots of people with recurrences that are doing well today. Is there going to be any further chemo?

    One question that I had for you was when was your brothers original diagnosis, and how was the recurrence caught? (ie. did he have any symptoms of a recurrence). I find it very helpful to share information like this, as I find that many people do not get screened enough after their initial treatments.

    Thanks & I will have your family in my thoughts,

    Vanessa
  • taraHK
    taraHK Member Posts: 1,952 Member
    #5
    Hi Jim, I am sorry to hear this latest news. I am sending prayers and best wishes your way. You ask "how will I know..." and "who can talk to me". As some others have indicated, I strongly believe that our doctors and medical staff have a commitment to do so. I have found it helpful to clearly state to the medical personel my philosophy/preferences -- in a direct way. One of mine happens to be that I want as much information as possible. (I regard information as information only --- it is there to serve me -- it is not a decision, and not a prognosis) - but others may have a somewhat different preference. I hope that you are able to speak with the oncologist soon, and that he/she gives you some of the information that you are wanting. Is there a social worker whom you might be able to get on side? Sometimes they can help one through the maze.
    Best wishes,
    Tara
  • Unknown
    Unknown
    #6
    Hi Jim. I too had to reply to your post as I am so sorry about your brother's condition and the mass confusion that must be affecting you both. I agree with what others have already said...speak with the oncologist as soon as you can as well as the surgeon and let them know you want the facts, straight and forward. It's only information, not a sentence, not a rule, not a prognosis, but it is empowermeant and something to start working with. Please keep us posted and best of luck in everything.

    Monika
  • steved
    steved Member Posts: 834 Member
    #7
    I'm very sorry about your situation- not knowing what is going to happen next is one of teh hardest thing to deal with through out this whole saga. It makes you feel so helpless and usseless.

    It is however one of those aspects of living with this illness or caring for some one with it that we need to learn to cope with.

    Your oncologist may be the best person to talk to about prognosis and treatment options but doctors aren't psychic and patients aren't all the same so prognosticating always includes some guess work based on previous experience. There may be a specialist colorectal or oncology nurse who may also be able to give you more time than the doctors can.
    Let us know how things progress and feel freet ouse this site to unburden yourself of teh mass of emotions and feelings you must be experiencing. Best of luk,
    Steve.
  • allsmiles
    allsmiles Member Posts: 25
    #8
    Jim,
    My hubby has recurring rectal cancer and has been through alot of the same as your brother John. God bless him. It is a rough road. My hubby was scheduled to have a pelvic exenteration as a last resort. Possibly an option for you. Unfortunately his tumor was tooo large but John's might not be. Check out everything!
    Will be praying for you and him.
    Allsmiles

Discussion Boards