goblet carcinoid or signet ring cell of the appendix or colon???

hpsquad
hpsquad Member Posts: 7
edited March 2014 in Rare and Other Cancers #1
The confusion is overwhelming. I was originally diagnosed with Stage IV Poorly differentiated signet ring cell adenocarcinoma. surgery removed my a tumor, appendix, part of my colon,small intestine the omentum (which had tumors in it) and several lymph nodes of which one had a tumor. A month later they changed the diagnosis to goblet carcinoid of the appendix. They said that it is rare but I can't find much more info. They said that appendix and colon cancers are treated the same. They are treating it with Folfox and Avastin which I will start Friday. With the original diagnosis, I was told that with chemo, they can give me some time but that it would come back stronger and would be fatal. Needless to say, I changed doctors. I have read alot of the message boards but don't know what to compare this situation to. Does anyone have any info or help?

Comments

  • acekayaker
    acekayaker Member Posts: 9
    #2
    some advice
    Dear Hpsquad,
    My husband was diagnosed in February of 2009 with signet ring cell adenocarcinoma of the appendix. He was not able to have
    surgery due to the amount of tumors spread through his abdomen. He was on many cycles of chemotherapy to keep the growth
    of tumors at bay. I would highly suggest using chemotherapy as a means to keep the tumor growth down. Yes, they do treat
    appendix cancer like colon cancer. My husband was also on Folfox and avastin. He was also later on irenotrican and xeloda and also avastin. He was also on blood thinners due to the risk of blood clots. He did fairly well through about ten months and then became more sick from the chemotherapy and just passed away on March 24, 2010. These are not nice cancers. I do not know the difference in what you were diagnosed and what you now have a new diagnosis of the goblet carcinoid. I am glad that you could have the tumors removed and hopefully the cells can be killed by the chemotherapy. Did they give you the chemotherapy treatment in your abdomen area directly in the area of the tumors they removed? can write me at acekayaker@myfairpoint.net
  • abrub
    abrub Member Posts: 2,174 Member
    #3
    Please confer with an appendix cancer specialist
    Please, please speak to someone who has treated appendix cancer. Much of the treatment is the same as for colon cancer, but some is different. I am an appendix cancer survivor,and had tumors on my ovary, omentum, and throughout the peritoneal cavity. I had several consultations before selecting my dr at Memorial Sloan Kettering - he has lots of experience with Appendix Cancer. I had a belly port placed, and intraperitoneal chemo prior to systemic chemo (Folfox/Avastin).

    From another post I made on another website to someone else newly diagnosed:

    Ask your doctor:

    How many cases of this cancer have you personally treated? Was the cancer confined to the appendix or was there mucin or ascites? What is the tumor type?
    Who can you refer us to who is an expert in this cancer?

    Make sure that the dr does not treat this "simply" as a variation of colon cancer. Although that chemo is commonly used, there are more considerations.

    There are several websites with information on Appendix cancer. Go to them and ask lots of questions.
  • barbchris
    barbchris Member Posts: 1
    #4
    signet ring cell appendix link
    Hello Hpsquad,

    hopefully you came across this link:
    http://www.appendix-cancer.com/
    It is a complicated technique, but it can help a lot.
    From what I know so far, one of the best places for its application is the center in Washington DC (Dr. Sugarbaker):
    http://www.surgicaloncology.com/
    Give a try and always keep a goal for yourself and never give up!
  • ForBenandSophia
    ForBenandSophia Member Posts: 11
    #5
    acekayaker said:

    some advice
    Dear Hpsquad,
    My husband was diagnosed in February of 2009 with signet ring cell adenocarcinoma of the appendix. He was not able to have
    surgery due to the amount of tumors spread through his abdomen. He was on many cycles of chemotherapy to keep the growth
    of tumors at bay. I would highly suggest using chemotherapy as a means to keep the tumor growth down. Yes, they do treat
    appendix cancer like colon cancer. My husband was also on Folfox and avastin. He was also later on irenotrican and xeloda and also avastin. He was also on blood thinners due to the risk of blood clots. He did fairly well through about ten months and then became more sick from the chemotherapy and just passed away on March 24, 2010. These are not nice cancers. I do not know the difference in what you were diagnosed and what you now have a new diagnosis of the goblet carcinoid. I am glad that you could have the tumors removed and hopefully the cells can be killed by the chemotherapy. Did they give you the chemotherapy treatment in your abdomen area directly in the area of the tumors they removed? can write me at acekayaker@myfairpoint.net

    Poorly differentiaed signet cell adenocarcinoma
    HI HPSquad,

    My husband had the same but it originated from a tumor in the cecum that spread to the peritoneal. We did 8 rounds of Folfox and are heading to Dr. Alexander at Univ of Md. Caner Center fr HIPEC. This is is truly his only shot for a cure. He has responded amzingly to the Folfox with minimal side effects. We pray the surgery is a success, but know there are no guarantees. I will say that Dr. Alexander and Onclogist her in Florida have been amazing and work well together. Would love to hear an update on your treatment.

    Erin
  • sitchy57
    sitchy57 Member Posts: 27
    #6
    appendix cancer
    I was diagnoised with appendix cancer in Sept 2010. It was discovered during a hystorectomy to remove my uterus, ovary , omentum and they told me they would take out my appendix while they were at it. Since it had a stone in it anyhow. The appendix was tested and it came back with cancer. The tumor was small but they were worried that some of the cancer could have escaped or be on my colon. I had a colonoscopy and a pet scan and everything came out clear. They took my appendix case to a tumor board to recommend treatment, because I was being treated by a gyn-onc for the uterine and ovarian cancers. My appendix cancer was 2 separate rare appendix cancers. If you have to be rare you might as well be double rare. The tumor board called for the pet scan and then decided to just watch close for the appendix cancer. The recommendation was to start the chemo for the ovarian cancer and mid way start the internal radiation for the uterine cancer. That is call Brachy Therapy. I am currently in chemo treatment every three weeks and the radiation will start the first part of Jan.
  • sitchy57
    sitchy57 Member Posts: 27
    #7
    Goblet cell
    My appendix cancer was also goblet cell (carcinoid) it was a grade 3 and still contained in my appendix. Praise the Lord Sharon
  • Shanin
    Shanin Member Posts: 3
    #8
    abrub said:

    Please confer with an appendix cancer specialist
    Please, please speak to someone who has treated appendix cancer. Much of the treatment is the same as for colon cancer, but some is different. I am an appendix cancer survivor,and had tumors on my ovary, omentum, and throughout the peritoneal cavity. I had several consultations before selecting my dr at Memorial Sloan Kettering - he has lots of experience with Appendix Cancer. I had a belly port placed, and intraperitoneal chemo prior to systemic chemo (Folfox/Avastin).

    From another post I made on another website to someone else newly diagnosed:

    Ask your doctor:

    How many cases of this cancer have you personally treated? Was the cancer confined to the appendix or was there mucin or ascites? What is the tumor type?
    Who can you refer us to who is an expert in this cancer?

    Make sure that the dr does not treat this "simply" as a variation of colon cancer. Although that chemo is commonly used, there are more considerations.

    There are several websites with information on Appendix cancer. Go to them and ask lots of questions.

    Signet Ring Cell of the Appendix
    Hi abrub-My father-in-law resently (July 15th 2011) was diagnosed w/ Signet Cell after his appendectomy. We are in a state of shock & very scared. He has an appointment w/ an oncologist tomorrow, July 19th '11. We are desperately trying to gather information + appropriate questions to ask during this visit. Any & all information is highly appriciated. My email is mrsshaninhall@aol.com .
    Thank you in advance for your time-Shannon (a very concerned daughter-in-law)
  • Shanin
    Shanin Member Posts: 3
    #9
    abrub said:

    Please confer with an appendix cancer specialist
    Please, please speak to someone who has treated appendix cancer. Much of the treatment is the same as for colon cancer, but some is different. I am an appendix cancer survivor,and had tumors on my ovary, omentum, and throughout the peritoneal cavity. I had several consultations before selecting my dr at Memorial Sloan Kettering - he has lots of experience with Appendix Cancer. I had a belly port placed, and intraperitoneal chemo prior to systemic chemo (Folfox/Avastin).

    From another post I made on another website to someone else newly diagnosed:

    Ask your doctor:

    How many cases of this cancer have you personally treated? Was the cancer confined to the appendix or was there mucin or ascites? What is the tumor type?
    Who can you refer us to who is an expert in this cancer?

    Make sure that the dr does not treat this "simply" as a variation of colon cancer. Although that chemo is commonly used, there are more considerations.

    There are several websites with information on Appendix cancer. Go to them and ask lots of questions.

    Signet Ring Cell of the Appendix
    Hi abrub-My father-in-law resently (July 15th 2011) was diagnosed w/ Signet Cell after his appendectomy. We are in a state of shock & very scared. He has an appointment w/ an oncologist tomorrow, July 19th '11. We are desperately trying to gather information + appropriate questions to ask during this visit. Any & all information is highly appriciated. My email is mrsshaninhall@aol.com .
    Thank you in advance for your time-Shannon (a very concerned daughter-in-law)
  • geomar
    geomar Member Posts: 2
    #10
    What doctor did you change to?
    My husband has the same diagnosis and they did surgery on him, too. There is a really good "closed" support group on Facebook. It's called: PMP Appendix Cancer Support Group. There you can ask any question you would like and the wealth of information and patient experience is incredible.

    I would like to know, though, who your doctor is now and how your treatment has been so far.

    Thanks and best regards!
  • iamsopositive
    iamsopositive Member Posts: 4
    #11
    ForBenandSophia said:

    Poorly differentiaed signet cell adenocarcinoma
    HI HPSquad,

    My husband had the same but it originated from a tumor in the cecum that spread to the peritoneal. We did 8 rounds of Folfox and are heading to Dr. Alexander at Univ of Md. Caner Center fr HIPEC. This is is truly his only shot for a cure. He has responded amzingly to the Folfox with minimal side effects. We pray the surgery is a success, but know there are no guarantees. I will say that Dr. Alexander and Onclogist her in Florida have been amazing and work well together. Would love to hear an update on your treatment.

    Erin

    poorly diff signet cell adenocarcinoma
    Hello Forbenandsophia
    I was wondering how your husband was doing. I know you posted this in 2010 and I hope he is recovering from this. Please could you let me know, as my husband was also diagnosed with this less than one month ago and is currently undergoing his 2nd round of chemo (FOLFOX). I dont know how he is responding to it as it is too early to tell. He is sched for surgery/ HIPEc in November after his chemo. Would love to hear an update from you soon. HOPING FOR THE BEST !
  • ForBenandSophia
    ForBenandSophia Member Posts: 11
    #12
    signet cell

    I am so embarrased that iCame to this webiste looking for a family member and saw someone had asked me a questiosn I never got! Sadly my jhusband who had the HIPEC passed June 16th 2011. I feel it was more the chemo that weakened him so. He was a very healthy guy who never drank or smoked. My only regret is we overlooked the bloating sign at age 47. HAd he had a colonoscopy earlier than the recommened "50" he would still be here. Sadly most appendiiceal cancers are diagnosed late unless detected during an appendectomy. I do know people who have survived but they all had early detection. Please let me know if I can help in amy way as I am also pretty knoowledged in Palliative Care now as well.

     

    Erin

  • jxhh
    jxhh Member Posts: 1
    #13
    Shanin said:

    Signet Ring Cell of the Appendix
    Hi abrub-My father-in-law resently (July 15th 2011) was diagnosed w/ Signet Cell after his appendectomy. We are in a state of shock & very scared. He has an appointment w/ an oncologist tomorrow, July 19th '11. We are desperately trying to gather information + appropriate questions to ask during this visit. Any & all information is highly appriciated. My email is mrsshaninhall@aol.com .
    Thank you in advance for your time-Shannon (a very concerned daughter-in-law)

    Appendix Cancer

    Hey, i too read your post. How is your husband doing?

    My brother is going through very similar things as well ... ive been tirelessly researching and trying to find others who have surivived such ordeal ...

    Although your post is outdated, i'd love to hear back from you. Please shoot me a private message or email me @ jxhnyi@gmail.com

  • Kacy62
    Kacy62 Member Posts: 2
    edited November 2017 #14
    Signet ring cells arising in a goblet cell carcinoid

    Hello.  i just joined this website today.  i was diagnosed in January 2017 during surgery to remove ovaries and uterus due to tumors.  Turned out the tumors were metastases from appendiceal cancer, specifically "adenocarcinoma with signet ring cell features arising in a goblet cell carcinoid of the appendix".  Following that surgery I received FULFURI and Avastin.  In June I had a debulking and HIPAC surgery and had my ascending colon, part of small intestine, omentum, and parts of peritoneum removed.  Also had the heated chemoperfusion (HIPAC) of the abdominal cavity.  I am now on "maintenance chemo" that consists of Avastin and Xeloda.  Is there anyone out there with a similar diagnosis?  I have heard from survivors of appendiceal cancer, but none of them had the signet ring cell features that make this cancer so rare and perilous.  If so i would like to hear from you.  If you prefer email please reply to:  kcfromme@gmail.com

    Thanks, Kacy62

  • ckumar
    ckumar Member Posts: 2
    #15
    Kacy62 said:

    Signet ring cells arising in a goblet cell carcinoid

    Hello.  i just joined this website today.  i was diagnosed in January 2017 during surgery to remove ovaries and uterus due to tumors.  Turned out the tumors were metastases from appendiceal cancer, specifically "adenocarcinoma with signet ring cell features arising in a goblet cell carcinoid of the appendix".  Following that surgery I received FULFURI and Avastin.  In June I had a debulking and HIPAC surgery and had my ascending colon, part of small intestine, omentum, and parts of peritoneum removed.  Also had the heated chemoperfusion (HIPAC) of the abdominal cavity.  I am now on "maintenance chemo" that consists of Avastin and Xeloda.  Is there anyone out there with a similar diagnosis?  I have heard from survivors of appendiceal cancer, but none of them had the signet ring cell features that make this cancer so rare and perilous.  If so i would like to hear from you.  If you prefer email please reply to:  kcfromme@gmail.com

    Thanks, Kacy62

    Michael P. Brown Foundation

    Hi Kacy,

    I don't have any experience on the appendiceal cancer but I do know of a person who has Signet Ring of the Colon (my husband has it too). It's called the Michael P. Brown Foundation - You can find information on him on Facebook. His wife writes a blog about his journey and I've found the information in there so beneficial!

     

    Best of luck,

     

    Carissa

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