Signet Ring Cell colon cancer survivors?

PaulZA
PaulZA Member Posts: 10
in Colorectal Cancer #1
Hi,

I was diagnosed with SRC colon cancer last Wednesday (3/29). T3N1M0 Stage 3. I am scheduled for surgery on Friday.

I was wondering if there are any long term survivors out there. Five years or more.

thanks,
Paul
«1

Comments

  • jasminsaba
    jasminsaba Member Posts: 157 Member
    #2
    Hi there ...
    Hi Paul - sorry to hear about your diagnosis. I can't offer any specific information on this topic that may be helpful, but I was wondering since you haven't had surgery yet, how you've already been given your specific TNM information (T3N1M0)?
  • peterz54
    peterz54 Member Posts: 341
    #3
    long term survivors
    Paul, I have done a lot of research on behalf of my wife with the same type of colon cancer - signet ring. but she's stage 4 because of significant cancer in her liver. my take, after reading so much, is that any stage other than IV has fairly high odds of 5 year survival. just refered to a 2009 paper by US Ocology (who my wife uses) which analyszed their patients and it put 4 year disease free survival at 70+% for patients following 1st line therapy. graph didn't go to 5 years.

    good luck.

    peter
  • janklo
    janklo Member Posts: 23
    #4
    Signet Cell
    Hi Paul! My daughter has signet ring cell colon cancer and she's still here 2 years after diagnosis. One thing to remember is you have to be your own advocate. Question everything because you have to stay one step ahead of the cancer!

    Here is another forum where you will find several signet cell survivors: The Colon Club
    http://coloncancersupport.colonclub.com/index.php

    And here is a link to a long term (10 years) signet cell appendix cancer survivor:
    http://appendix-cancer.blogspot.com/

    Ask if you have any more questions!
    Janet
  • tootsie1
    tootsie1 Member Posts: 5,044 Member
    #5
    Hi
    I just want to offer my prayers and best wishes for you.

    *hugs*
    Gail
  • PaulZA
    PaulZA Member Posts: 10
    #6
    tootsie1 said:

    Hi
    I just want to offer my prayers and best wishes for you.

    *hugs*
    Gail

    thanks tootsie!
    appreciate it
  • PaulZA
    PaulZA Member Posts: 10
    #7
    janklo said:

    Signet Cell
    Hi Paul! My daughter has signet ring cell colon cancer and she's still here 2 years after diagnosis. One thing to remember is you have to be your own advocate. Question everything because you have to stay one step ahead of the cancer!

    Here is another forum where you will find several signet cell survivors: The Colon Club
    http://coloncancersupport.colonclub.com/index.php

    And here is a link to a long term (10 years) signet cell appendix cancer survivor:
    http://appendix-cancer.blogspot.com/

    Ask if you have any more questions!
    Janet

    thanks Janet
    glad to hear your daughter is doing well
  • PaulZA
    PaulZA Member Posts: 10
    #8
    peterz54 said:

    long term survivors
    Paul, I have done a lot of research on behalf of my wife with the same type of colon cancer - signet ring. but she's stage 4 because of significant cancer in her liver. my take, after reading so much, is that any stage other than IV has fairly high odds of 5 year survival. just refered to a 2009 paper by US Ocology (who my wife uses) which analyszed their patients and it put 4 year disease free survival at 70+% for patients following 1st line therapy. graph didn't go to 5 years.

    good luck.

    peter

    thanks Peter
    hope it goes well with your wife
  • PaulZA
    PaulZA Member Posts: 10
    #9
    jasminsaba said:

    Hi there ...
    Hi Paul - sorry to hear about your diagnosis. I can't offer any specific information on this topic that may be helpful, but I was wondering since you haven't had surgery yet, how you've already been given your specific TNM information (T3N1M0)?

    Hi jasminsaba
    The T3N1M0 staging is the surgeon' estimate at this stage based on all the available data.

    I think they have a pretty good idea of the size of the tumour from the CT scan and colonsocopy. The CT scan report said 15cm.

    We aren't sure about the N1 part. I guess I have to wait until the removed lymph nodes have been tested after surgery. The CT scan picked up 3 enlarged lymph nodes but hopefully they are just inflamed.

    bye for now,
    Paul
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #10
    SRC
    I had been diagnosed in Sept 2007 with SRC to the colon. I have had surgery in Sept 2007 and again in Nov 2007. Third Surgery in June 2010, followed by 6 months of FolFox chemo. Which put me in the hospital twice. My CEA was 1125 in June 2010, and is now 3.4.

    Keep up a good attitude, and we will make 5 Years together!
    Best Always, mike
  • PaulZA
    PaulZA Member Posts: 10
    #11
    thxmiker said:

    SRC
    I had been diagnosed in Sept 2007 with SRC to the colon. I have had surgery in Sept 2007 and again in Nov 2007. Third Surgery in June 2010, followed by 6 months of FolFox chemo. Which put me in the hospital twice. My CEA was 1125 in June 2010, and is now 3.4.

    Keep up a good attitude, and we will make 5 Years together!
    Best Always, mike

    Hi Mike
    Thanks for the post. Glad to hear that you have got your CEA down.

    My first challenge is to get through and recover from tomorrow's surgery. (left hemi colectomy)

    ciao,
    Paul
  • PaulZA
    PaulZA Member Posts: 10
    #12
    SRC update
    I just saw this earlier post of mine and thought I'd give an update.

    The operation on 3/9 (left hemicolectomy) went well. Unfortunately the surgeon discovered tht the tumour had invaded the bladder and the abdominal wall, making it a T4. He removed the affected piece of bladder, which still works fine by the way, and marked where the tumour had attached to the abdominal wall with clips.

    The removed pieve of colon was tested an 1 out of 11 lymph nodes were found to be affected.

    So it is now T4N2M0 or stage IIIc

    Nnext steps are radiation therapy for one month combined with one hour of 5FU per day for week 1 and 3. This is going to start next week.

    After this it is the usual 6 months of FOLFOX.

    So, there we are. I guess I had no choice but to ride it out, and maybe find a HIPEC surgeon in my neck of the woods, just in case.
  • PaulZA
    PaulZA Member Posts: 10
    #13
    SRC update
    I just saw this earlier post of mine and thought I'd give an update.

    The operation on 3/9 (left hemicolectomy) went well. Unfortunately the surgeon discovered tht the tumour had invaded the bladder and the abdominal wall, making it a T4. He removed the affected piece of bladder, which still works fine by the way, and marked where the tumour had attached to the abdominal wall with clips.

    The removed pieve of colon was tested an 1 out of 11 lymph nodes were found to be affected.

    So it is now T4N2M0 or stage IIIc

    Nnext steps are radiation therapy for one month combined with one hour of 5FU per day for week 1 and 3. This is going to start next week.

    After this it is the usual 6 months of FOLFOX.

    So, there we are. I guess I had no choice but to ride it out, and maybe find a HIPEC surgeon in my neck of the woods, just in case.
  • PaulZA
    PaulZA Member Posts: 10
    #14
    SRC update
    I just saw this earlier post of mine and thought I'd give an update.

    The operation on 3/9 (left hemicolectomy) went well. Unfortunately the surgeon discovered tht the tumour had invaded the bladder and the abdominal wall, making it a T4. He removed the affected piece of bladder, which still works fine by the way, and marked where the tumour had attached to the abdominal wall with clips.

    The removed piece of colon was tested an 10 out of 11 lymph nodes were found to be affected. :-(

    So it is now T4N2M0 or stage IIIc

    Nnext steps are radiation therapy for one month combined with one hour of 5FU per day for week 1 and 3. This is going to start next week.

    After this it is the usual 6 months of FOLFOX.

    So, there we are. I guess I had no choice but to ride it out, and maybe find a HIPEC surgeon in my neck of the woods, just in case.
  • PaulZA
    PaulZA Member Posts: 10
    #15
    SRC update
    .
  • thxmiker
    thxmiker Member Posts: 1,278 Member
    #16
    PaulZA said:

    SRC update
    I just saw this earlier post of mine and thought I'd give an update.

    The operation on 3/9 (left hemicolectomy) went well. Unfortunately the surgeon discovered tht the tumour had invaded the bladder and the abdominal wall, making it a T4. He removed the affected piece of bladder, which still works fine by the way, and marked where the tumour had attached to the abdominal wall with clips.

    The removed piece of colon was tested an 10 out of 11 lymph nodes were found to be affected. :-(

    So it is now T4N2M0 or stage IIIc

    Nnext steps are radiation therapy for one month combined with one hour of 5FU per day for week 1 and 3. This is going to start next week.

    After this it is the usual 6 months of FOLFOX.

    So, there we are. I guess I had no choice but to ride it out, and maybe find a HIPEC surgeon in my neck of the woods, just in case.

    Glad all went well!
    When
    Glad all went well!

    When looking for articles about treatment of Signet Ring Cell, be sure to read the date before reading the article. Pre 2007 the diagnosis was not positive. The change in treatments and refining of FolFox has improved greatly.

    Diet, attitude, exercise, etc... will also have a large impact on how well everything goes. Chemo is a terrible experience, but can made bearable with good attitude. My wife went with me for most treatments, else a long term friend went with me. That made the trips and experience less traumatic. Having someone there to drive me home, and get food, or just talk to me during treatments was a real benefit.

    I met several people facing chemo on their own, and one could see the pain in their faces during treatments. Could I have done Chemo by myself, Yes, but it would have been much more difficult.

    Best Always, mike
  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    #17
    Hi Paul,
    I'm glad that the

    Hi Paul,

    I'm glad that the surgery went well for you, that's great news. If you decide to go the HIPEC route, please feel free to send me a note. Also, if you live in the Northeast, I can provide you with the name of a good HIPEC surgeon.

    Take care,

    Cynthia
  • KJaquez
    KJaquez Member Posts: 1
    #18
    signet ring cell cancer survivors

    My daughter was diagnosed in 2013 at age 13. its come back and she will going through chemo and radation.

     

    im curious if there any survivors and what treatments you used? i am desperate to find answers.

     

    thank you

  • marbleotis
    marbleotis Member Posts: 720 Member
    #19
    Hi - I was stage 3b singet cell - NED 4 years in Jan

    Hi,

     

    Sorry you are here.  My story may help you.

    I was dx'ed Jan 2012 with stage 3b signet cell in the ascending colon.  I had the surgery to remove followed by 6 months of 5fu (chemo).

    I am happy to say that as of Jan 2016 I will be 4 years NED.  I have had scans every 3 then 6 months, then annual post surgery and CEA blood tests with that same schedule.  I also have annual colonoscopies.  All results have been really good and my Onc was expecially happy when I passed the 3 year mark as NED.  Apparently with signet cell the 3 year mark of NED is more telling then a 5 year....go figure.

    You will get through all of this.  It is very over-whelming at first.  Breathe, bring a notebook to all Dr appointments and keep posting us with your progress.

    The CSN was a great resource for me all through my journey.  You may send me a private message if you need to.

     

    All the best

     

  • Jeff's mom
    Jeff's mom Member Posts: 20
    #20
    marbleotis said:

    Hi - I was stage 3b singet cell - NED 4 years in Jan

    Hi,

     

    Sorry you are here.  My story may help you.

    I was dx'ed Jan 2012 with stage 3b signet cell in the ascending colon.  I had the surgery to remove followed by 6 months of 5fu (chemo).

    I am happy to say that as of Jan 2016 I will be 4 years NED.  I have had scans every 3 then 6 months, then annual post surgery and CEA blood tests with that same schedule.  I also have annual colonoscopies.  All results have been really good and my Onc was expecially happy when I passed the 3 year mark as NED.  Apparently with signet cell the 3 year mark of NED is more telling then a 5 year....go figure.

    You will get through all of this.  It is very over-whelming at first.  Breathe, bring a notebook to all Dr appointments and keep posting us with your progress.

    The CSN was a great resource for me all through my journey.  You may send me a private message if you need to.

     

    All the best

     

    Stage IIIB SRC

    I was diagnosed with SRC colon cancer almost a year ago and have had surgery and Chemo with 5FU.  My CEA is going up, up, up! 375 now.  I don't even know what to do next...My onc says my situation is "very concerning."  Any thoughts?

  • Jeff's mom
    Jeff's mom Member Posts: 20
    #21
    Stage IIIB SRC

    Hi out there.  My Dr. now says there's nothing left for me to do.  I said "so I'm good til I'm not?"  He answered "No, you'll start having symptoms soon."  I asked him what symptoms I might have, and he just said that we'd talk about it later.  I want to know.  Does anyone have any answers? Thanks

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