New to board, brother just diagnosed with signet cell

menang
menang Member Posts: 35
edited May 2011 in Colorectal Cancer #1
My 30 year old brother has just been diagnosed with signet cell cancer which they believe originated in the bowel. During surgery to repair what they thought was a twisted intestine they opened him up and everything is "glued together". He is at our local hospital waiting to be trasferred to Roswell Park Cancer Institute. My question is, can anybody point me to some good literature out there regarding this disease? We do not have a hard copy of the pathology and no staging has been done (I am hoping they were able to remove lymph nodes during the surgery, but the surgeon had stressed that they could not move anything, so I'm thinking it may not have been possible). We were only told that it is "attached" to everything. On a good note, a CT scan showed no metastasis to his liver. Bloodwork was good with the exception of low potassium, which would make sense since he has not eaten well (loss of appetite/vomiting) in the past month. He has lost over 50 pound in the last 6 months. My husband is a stage III melanoma survivor, and finding a network for caregivers/survivors was the one of the best things I could of done. Any info, websites, books, or words of wisdom would be greatly appreciated.

Maria

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    Roswell Park is great
    He may have PMP aka "Jelly Belly" where mucin mucks up everything inside - rare, but Roswell Park does treat that. PMP is often of Appendiceal origin.

    You need more info, but once you get a confirmed diagnosis, it will be easier to move forward.

    Roswell Park is one of the best in the world - he's making a good move.

    Wishing you well.

    Alice
  • menang
    menang Member Posts: 35
    #3
    abrub said:

    Roswell Park is great
    He may have PMP aka "Jelly Belly" where mucin mucks up everything inside - rare, but Roswell Park does treat that. PMP is often of Appendiceal origin.

    You need more info, but once you get a confirmed diagnosis, it will be easier to move forward.

    Roswell Park is one of the best in the world - he's making a good move.

    Wishing you well.

    Alice

    Thank you..
    Thank you Alice. We have had other family members treated at Roswell (including my husband) and I love that hospital. The waiting for information is the hardest part - and our local hospital went from "don't worry, it's just a blockage and not cancer" to "it's cancer and the prognosis is not good". My parents are besides themselves and just looking for any hope - I immediately looked for a board like this and have printed off a thread with replies from stage 4 survivors - I really think they need the support right now. On a side note, my brother is mentally challenged (borderline MR) and how we are going to tell him is what we are facing right now. We are hoping that Roswell can help with that.
  • abrub
    abrub Member Posts: 2,174 Member
    #4
    menang said:

    Thank you..
    Thank you Alice. We have had other family members treated at Roswell (including my husband) and I love that hospital. The waiting for information is the hardest part - and our local hospital went from "don't worry, it's just a blockage and not cancer" to "it's cancer and the prognosis is not good". My parents are besides themselves and just looking for any hope - I immediately looked for a board like this and have printed off a thread with replies from stage 4 survivors - I really think they need the support right now. On a side note, my brother is mentally challenged (borderline MR) and how we are going to tell him is what we are facing right now. We are hoping that Roswell can help with that.

    I'm stage 4 Appendix cancer survivor
    and doing great, tho I didn't have PMP. A friend who did is also doing very well, at about 4 years out. Just routine CT scans and blood work at this point. We both had major surgery and chemo that was tough, tho. It will be hard to explain to your brother. Let's see what his diagnosis is, and what his treatment will be.
  • John23
    John23 Member Posts: 2,122 Member
    #5
    Maria -


    Re:
    ".......and everything is "glued together".........
    ......We were only told that it is "attached" to everything..... "

    The big question is: Has he ever had abdominal surgery in the past?

    Are the surgeons talking about adhesions? Or are they saying
    that the cancer has invaded everything, and holding it all together?

    There is nothing "easy" about cancer, and there is no "cure", to date.

    There are repercussions with surgery associated with cancer, that
    can make one's prognosis worse, rather than better. (I'm one of those).

    So let the forum know exactly why the surgeons said what they
    said, and maybe we can shed some light and give you some hope!

    Stay healthy!

    John
  • menang
    menang Member Posts: 35
    #6
    John23 said:

    Maria -


    Re:
    ".......and everything is "glued together".........
    ......We were only told that it is "attached" to everything..... "

    The big question is: Has he ever had abdominal surgery in the past?

    Are the surgeons talking about adhesions? Or are they saying
    that the cancer has invaded everything, and holding it all together?

    There is nothing "easy" about cancer, and there is no "cure", to date.

    There are repercussions with surgery associated with cancer, that
    can make one's prognosis worse, rather than better. (I'm one of those).

    So let the forum know exactly why the surgeons said what they
    said, and maybe we can shed some light and give you some hope!

    Stay healthy!

    John

    Mike's Pathology Report
    Quote:
    "metastatic adenocarcinoma with signet ring cell features. one small lymph node is identified in Part A of specimen; it is focally involved by the tumor. tumor cells are strongly positive for CK20 and focally positive for CK7"

    We were at the hospital yesterday and were told that Roswell's surgical oncology dept would not take Michael because no other surgery could be done. We were preparing to take him home when Roswell's chief of medical oncology said they would admit him, so he is being transferred on Sunday.

    He has never had surgery. This is the first time he has ever been sick. Apparently the cancer is "moving over" his liver but has not yet invaded it. I had asked for a copy of the OR report, but haven't gotten it yet. The CT scan he had right before the colonoscopy (I looked at the report myself) did not indicate any suspicous lesions, spots, anything - only that his bowel was disstended due to a stricture. His bloodwork is also good. We are going to wait until we get to Roswell to ask the tough questions... his surgeon at the Community Hospital was wonderful, but not an oncologist. I think he was trying to explain it in laymans terms so we could better understand it.

    We explained to Michael that the biopsy they took showed cancer and that he would be moved for treatment (all while keeping a positive attitude). He took it very well and is looking forward to just getting better so he can enjoy his summer. He is so amazingly tough - he will give this fight all he has, of that I'm sure.

    If there are questions we should ask his oncologist (or a list on website), please let me know. And thank you both for replying. I'll keep you posted.

    Maria
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #7
    I'll be thinking of you and
    I'll be thinking of you and your brother...stay here with us. This place offers so much support, encouragement, and experience!

    Love, Gail
  • menang
    menang Member Posts: 35
    #8
    plh4gail said:

    I'll be thinking of you and
    I'll be thinking of you and your brother...stay here with us. This place offers so much support, encouragement, and experience!

    Love, Gail

    Thank you Gail...
    Thank you so much. I really think that Alice is right - I am hoping that Michael is a candidate for HIPEC. Waiting is so hard...
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #9
    Sorry
    So sorry to hear of your brother's prognosis. I'm hoping that your brother gets the best treatment possible. You and brother are in my prayers.

    Kim

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