Signet ring adenocarcinoma...anyone else have it?

Maxiecat
Maxiecat Member Posts: 544 Member
in Colorectal Cancer #1
I had my appointment with my oncologist to where he told me that my cancer is a "variant" (his words) of colon cancer. I have looked it up and found statistics showing that it is very rare...less than 1% of colon cancers. The prognosis isn't good...but then the only informlmation i have found is old. I am thinking that i need to find a specialist...even though i really like my doctor. I am concrrned that the chemo is not going to be very effective as this type of cancer is not only very aggressive but resistant to chemo.

Is any one else diagnosed with signet ring cell cancer? Does anyone have any info....info on specialists in signet ring cancer? I am in Northern Virginia...so Washington or even Baltimore woul be ideal. I also have family in Tampa...so Moffit could also be an option.

Alex

....i am sure i will have more questions as i statt to research this.
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Comments

  • glinka65
    glinka65 Member Posts: 132
    #2
    alex
    sorry to hear man!!! i live in tampa, if you can get in moffit do it, rare cancer is right up there ally!!! if you decide to go there and need info on tampa, where to stay, eat things like that just give me a hollar!! good luck, Tommy
  • glinka65
    glinka65 Member Posts: 132
    #3
    alex
    sorry to hear man!!! i live in tampa, if you can get in moffit do it, rare cancer is right up there ally!!! if you decide to go there and need info on tampa, where to stay, eat things like that just give me a hollar!! good luck, Tommy
  • Lovekitties
    Lovekitties Member Posts: 3,364 Member
    #4
    Dear Alex
    Check out this site which will give you all the NCI hospitals by state:

    http://www.cancer.gov/researchandfunding/extramural/cancercenters#south

    Once you find one or more that you have interest in, find that hospital's main web page. There you should find a way to contact them directly so that you can ask about their experience in treating your type of cancer.

    Among those in your areas of interest are Moffit, Georgetown, John Hopkins, University of Maryland and perhaps others you would consider.

    Also it would not hurt to ask your current doctor for his recommendation. He should be more than willing to help you find someone more experienced in your rare cancer type.

    Let us know how your search goes.

    Hugs,

    Marie who loves kitties
  • Katherine85
    Katherine85 Member Posts: 11
    #5
    Signet Ring Andeocarcinoma
    Hi Alex:

    I too have been dx with Signet Ring Andeocarcinoma. Mine they said is a rare type of cancer which started in 2003. I had my appendix removed and at that time they said it was a rare form of cancer - Goblet Cell Carcinoid Signet Ring. The oncologist did nothing at that time believing that they removed all of the tumor and I had nothing to worry about. Now, 9 years later I was with Stage IV colon cancer, from the Goblet Cell Andeocarcinoma Signet Ring. I am being treated with Folfiri and Avastin. The oncologist told me that they will do another CT scan in 3 months to see if the tumors are shrinking and in 6 months see if they can surgically remove the tumors. I am in the wait and see stage.

    My doctors told me that this is NOT an aggressive form of cancer so I am confused. Please, please see an oncologist ASAP. Please also keep me posted.

    You are in my prayers,

    Katherine
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #6
    Katherine85 said:

    Signet Ring Andeocarcinoma
    Hi Alex:

    I too have been dx with Signet Ring Andeocarcinoma. Mine they said is a rare type of cancer which started in 2003. I had my appendix removed and at that time they said it was a rare form of cancer - Goblet Cell Carcinoid Signet Ring. The oncologist did nothing at that time believing that they removed all of the tumor and I had nothing to worry about. Now, 9 years later I was with Stage IV colon cancer, from the Goblet Cell Andeocarcinoma Signet Ring. I am being treated with Folfiri and Avastin. The oncologist told me that they will do another CT scan in 3 months to see if the tumors are shrinking and in 6 months see if they can surgically remove the tumors. I am in the wait and see stage.

    My doctors told me that this is NOT an aggressive form of cancer so I am confused. Please, please see an oncologist ASAP. Please also keep me posted.

    You are in my prayers,

    Katherine

    Katherine - you sound just
    Katherine - you sound just like me...they removed my appendix too with the colon resection. My Dr told me that this is a vaiant of colon cancer that the tumor was contained mainly in the colon. They also removed 4 nodes that had cancer and 14 that were good. There was no evidence that it had gone elsewhere - and they think that they god everything. He said that the course of treatment would be the 6 to 8 months of folfox.

    I want to make sure that they are treating this aggressively. Everything that I have read is that this is an aggressive cancer and that it is resistant to the typical colon cancer chemo therapy. I only had the one CT scan when I was originally diagnosed - I asked about a PET. Right now I want a second opinion and another CT scan.

    I am going to ask my current doctor about avastin the next time I see him.

    I am so relieved to hear that you are still going strong after 9 years....since this is so rare - some of the information out there is so old and not reliable or very positive.

    Alex
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #7
    My thoughts and prayers are
    My thoughts and prayers are with you, Alex.

    I had been diagnosed in 18 September 2007, with Signet Ring Cell Cancer. (The Date I will never forget.) Recurrence in June 2010, with 4 tumors in my small intestine. FolFox for 6 months, blah blah blah.

    Do not read anything printed before 2007 about Signet Ring Cell. It is not positive. The purifying of Oxaliplatin has changed the game in our favor! MY CEA was 1125 in June of 2010, and is now 2.0.

    Diet, positive attitude, and exercise will do one well in fighting the Big C.

    Find an Oncologist that has experience with Signet Ring Cell in the colon. I used St. Johns in Los Angeles, Lee Rosen MD., his group of docs write about 1/3 of the colon cancer papers in the USA. They had only seen 8 cases of SRC in the colon. My treatment was no where near perfect, at the same time I am here in remission, hopefully tumor free.

    The Anti Cancer Diet - David Serban Schreiber MD is a really positive read. It is not about SRC but about cancer and about the research and cures that are up and coming. It also deals with the Doc's own battle with "incurable" cancer.

    Best Always, mike
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #8
    Katherine85 said:

    Signet Ring Andeocarcinoma
    Hi Alex:

    I too have been dx with Signet Ring Andeocarcinoma. Mine they said is a rare type of cancer which started in 2003. I had my appendix removed and at that time they said it was a rare form of cancer - Goblet Cell Carcinoid Signet Ring. The oncologist did nothing at that time believing that they removed all of the tumor and I had nothing to worry about. Now, 9 years later I was with Stage IV colon cancer, from the Goblet Cell Andeocarcinoma Signet Ring. I am being treated with Folfiri and Avastin. The oncologist told me that they will do another CT scan in 3 months to see if the tumors are shrinking and in 6 months see if they can surgically remove the tumors. I am in the wait and see stage.

    My doctors told me that this is NOT an aggressive form of cancer so I am confused. Please, please see an oncologist ASAP. Please also keep me posted.

    You are in my prayers,

    Katherine

    Goblet Cell Andeocarcinoma
    Goblet Cell Andeocarcinoma or Carcinoid are not aggressive forms of cancer. They can morph into Signet Ring Cell which is aggressive. If you look up pics of the cells they are extremely close looking, and even a common misdiagnosis. My first Diagnosis was Goblet cell, and after a later review was diagnosed as Signet Ring Cell.

    Do not read anything before 2007 about SRC, it is not positive.

    Best Always, mike
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #9
    thxmiker said:

    My thoughts and prayers are
    My thoughts and prayers are with you, Alex.

    I had been diagnosed in 18 September 2007, with Signet Ring Cell Cancer. (The Date I will never forget.) Recurrence in June 2010, with 4 tumors in my small intestine. FolFox for 6 months, blah blah blah.

    Do not read anything printed before 2007 about Signet Ring Cell. It is not positive. The purifying of Oxaliplatin has changed the game in our favor! MY CEA was 1125 in June of 2010, and is now 2.0.

    Diet, positive attitude, and exercise will do one well in fighting the Big C.

    Find an Oncologist that has experience with Signet Ring Cell in the colon. I used St. Johns in Los Angeles, Lee Rosen MD., his group of docs write about 1/3 of the colon cancer papers in the USA. They had only seen 8 cases of SRC in the colon. My treatment was no where near perfect, at the same time I am here in remission, hopefully tumor free.

    The Anti Cancer Diet - David Serban Schreiber MD is a really positive read. It is not about SRC but about cancer and about the research and cures that are up and coming. It also deals with the Doc's own battle with "incurable" cancer.

    Best Always, mike

    Thank you Mike! I will try
    Thank you Mike! I will try to be conscious of the date of anything that I read. I am still looking for a more local doctor..mi am in Virginia. If i have to i'll travel to Baltimore, new York, Tampa, philadelphia, r even LA. There has got to be someone near me..mafter all i am near the national canfer institute (i have a call in to there), georgetown, and NIH. Right now i am on Folfox....i just want to get to a specialist so that we can fight this with fullninformation.

    I have changed my diet...and will check out your book recommendation.

    Alex
  • geotina
    geotina Member Posts: 2,111 Member
    #10
    Hi Alex:
    Sorry, I can offer you no information regarding Signet Cell. But, there is a current thread on the Colon Club regarding this type of cancer and several members there have it. If you are not familiar with the Colon Club just google it and you can read the thread. Perhaps their members can tell you where they are being treated and what type of treatment they had.

    Take care - Tina
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #11
    geotina said:

    Hi Alex:
    Sorry, I can offer you no information regarding Signet Cell. But, there is a current thread on the Colon Club regarding this type of cancer and several members there have it. If you are not familiar with the Colon Club just google it and you can read the thread. Perhaps their members can tell you where they are being treated and what type of treatment they had.

    Take care - Tina

    Thank you! I just went over
    Thank you! I just went over to the colon club...looks like that will be another good resource for me.
  • geotina
    geotina Member Posts: 2,111 Member
    #12
    Maxiecat said:

    Thank you! I just went over
    Thank you! I just went over to the colon club...looks like that will be another good resource for me.

    Another great resource is Fight Colorectal Cancer and Colon Cancer Alliance. Wish I could be of more help.

    Tina
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #13
    geotina said:

    Another great resource is Fight Colorectal Cancer and Colon Cancer Alliance. Wish I could be of more help.

    Tina

    Thank You!
    Thanks Tina! Two good new resources.

    Best Always, mike

    PS I just got a juicer and am adding juicing to my diet!
  • Mrs. B.
    Mrs. B. Member Posts: 7
    #14
    Signet ring cell
    January 2011 I was diagnosed with stage 4 appendix cancer, signet ring cell. My appendix was removed, cancer on the peritonea, one lymph. Oncologist said aggressive, 40% chance of responding to chemo, prognosis 18-24 months with chemo. 6-8 months with no treatment.. I talked with American Can Society, same info. So I chose no treatment-- began juicing veggies, taking vitamins and supplements and became a strict a vegan. CEA and C9-19 numbers have dropped. I feel fine, no symptoms. Scan shows cancer on peritonea with minimal growth. This may not work for everyone, but it's working for me. Last appointment oncologist said he was surprised, thought we would have problems by now.
  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #15
    Mrs. B. said:

    Signet ring cell
    January 2011 I was diagnosed with stage 4 appendix cancer, signet ring cell. My appendix was removed, cancer on the peritonea, one lymph. Oncologist said aggressive, 40% chance of responding to chemo, prognosis 18-24 months with chemo. 6-8 months with no treatment.. I talked with American Can Society, same info. So I chose no treatment-- began juicing veggies, taking vitamins and supplements and became a strict a vegan. CEA and C9-19 numbers have dropped. I feel fine, no symptoms. Scan shows cancer on peritonea with minimal growth. This may not work for everyone, but it's working for me. Last appointment oncologist said he was surprised, thought we would have problems by now.

    Mrs B ...what vitamins and
    Mrs B ...what vitamins and supplements are you on? I am trying to eat healthier...no red mea...but i have been eating a little fish and chicken. I am doing chemo right now and have a call ijto someone at NIH...whch is thankfully close to my home.
  • donnastar61
    donnastar61 Member Posts: 1 Member
    #16
    Mrs. B. said:

    Signet ring cell
    January 2011 I was diagnosed with stage 4 appendix cancer, signet ring cell. My appendix was removed, cancer on the peritonea, one lymph. Oncologist said aggressive, 40% chance of responding to chemo, prognosis 18-24 months with chemo. 6-8 months with no treatment.. I talked with American Can Society, same info. So I chose no treatment-- began juicing veggies, taking vitamins and supplements and became a strict a vegan. CEA and C9-19 numbers have dropped. I feel fine, no symptoms. Scan shows cancer on peritonea with minimal growth. This may not work for everyone, but it's working for me. Last appointment oncologist said he was surprised, thought we would have problems by now.

    MRS. B,

    I would like to ask you how you are doing at this time?  I see this thread stopped and I am wondering if everyone is OK.

    I am a Colon Signet Cell Survivor and it never even dawned on me that my Oncologist at Duke may not have any other patients with signet cell rings.  In any event, I had traditional chemo and ressection and NED at this time. 

     

    I have not participated in any internet forums and this is my first post.  So please understand I am not used to communicating that much on line. 

     

    Thanks.

  • Mrs. B.
    Mrs. B. Member Posts: 7
    #17
    Maxiecat said:

    Mrs B ...what vitamins and
    Mrs B ...what vitamins and supplements are you on? I am trying to eat healthier...no red mea...but i have been eating a little fish and chicken. I am doing chemo right now and have a call ijto someone at NIH...whch is thankfully close to my home.

    Signet ring

    Hi Maxiecat,

    I apologize for not answering sooner.  I hope you are doing well.  I am still symptom free and still surprising the oncologist.  I take several vitamins and supplements.

    I start the day with an organic essential detox, IP-6 & Inositol by Cell Forte, Milk thistle, ginger, turmeric, grape seed, Liver Guard by Source Natural, vitamins B, C & D.

    I believe the vegan diet is really important. 

  • Mrs. B.
    Mrs. B. Member Posts: 7
    #18
    donnastar61 said:

    MRS. B,

    I would like to ask you how you are doing at this time?  I see this thread stopped and I am wondering if everyone is OK.

    I am a Colon Signet Cell Survivor and it never even dawned on me that my Oncologist at Duke may not have any other patients with signet cell rings.  In any event, I had traditional chemo and ressection and NED at this time. 

     

    I have not participated in any internet forums and this is my first post.  So please understand I am not used to communicating that much on line. 

     

    Thanks.

    Signet ring

    Donnastar61,

    I am fine.  I am still trying to find my way around this message board.  I received your message in my csn email box, and sent you a message.  My last blood work had CA19-9 at 48.9 and my CEA stays normal at 4.80.  My oncologist says it is rare variety of a rare cancer.

     

  • patmchere
    patmchere Member Posts: 1
    #19
    Maxiecat said:

    Thank you Mike! I will try
    Thank you Mike! I will try to be conscious of the date of anything that I read. I am still looking for a more local doctor..mi am in Virginia. If i have to i'll travel to Baltimore, new York, Tampa, philadelphia, r even LA. There has got to be someone near me..mafter all i am near the national canfer institute (i have a call in to there), georgetown, and NIH. Right now i am on Folfox....i just want to get to a specialist so that we can fight this with fullninformation.

    I have changed my diet...and will check out your book recommendation.

    Alex

    Signet Ring Cell Adenocarcinoma specialist nearer to you

    Alex -

    I am a colon cancer survivor and my wife is currently fighting appendiceal cancer (poorly differentiated signet ring cell adenocarcinoma).  Her doctor here in Atlanta is Dr. Daniel Dubovsky and he is following the protocols established for peritoneal carcinomatosis originating in the appendix with signet ring cell features.  Cytoreductive surgery (CRS) followed by HIPEC (heated intraperitoneal chemo) is typical for peritoneal cancer.

    In trying to get more information for my wife's care, I received a recommendation to Dr. Edward A. Levine at Wake Forest.  He is reputed to be an expert in your specific type of malignancy.

    http://www.wakehealth.edu/Faculty/Levine-Edward-A.htm

    My wife is scheduled for an evaluation by MD Anderson Cancer Center.  Dr. Paul Mansfield and Dr. Keith Fournier both have significant experience with this type of cancer and practice at MD Anderson.

     

    Hope this helps!

    Patrick

  • Maxiecat
    Maxiecat Member Posts: 544 Member
    #20
    Mrs. B. said:

    Signet ring

    Donnastar61,

    I am fine.  I am still trying to find my way around this message board.  I received your message in my csn email box, and sent you a message.  My last blood work had CA19-9 at 48.9 and my CEA stays normal at 4.80.  My oncologist says it is rare variety of a rare cancer.

     

    I am doing well right now

    I am doing well right now too.   I finished chemo in January and am now dealing with the neuropathy side effects.   I had a scare at the beginning of Feb... My liver panels were dnormal the normal range and I was sent for an MRI.   We believe the Neurontin I was on for the neuropathy caused it... Went off of it for 2 weeks and now back to normal.  I have been having some pretty much daily lower back pain... Dr is sending me for X-rays tomorrow.   I go back to see him on the 26th of March.  For now he is putting me on Lyrica.  he did not have my latest CEA number for me ... They did some bloodworm for it today....last time it was 0.9 ... Which is great.   We just changed insurance plans ... So now we can figure out which is the best specialist to see.   My current drs believe that they got everything out in the resection....I don't have any peritoneal issues right now.   I did ask for a PET...but this office believes in ct scans and MRIs.   I'll get my PET Scan one way or another..I'll just have the specialist order it?

     

    I hope everyone else is doing good.   I am going to incorporate some of the other supplements that I am not already taking.

    Alex

  • Sonia32
    Sonia32 Member Posts: 1,071 Member
    #21
    Yes

    I have that on my record. But it was never really mentioned to me. I only found out as I asked for my illness to be investigated.

    Anyway I am in remission at the moment, from the class of 2009. I have a scan coming up soon, so I will see if I hit four years.

    I had surgery, and 6 momths of chemo.

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