Signet ring adenocarcinoma...anyone else have it?

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  • marbleotis
    marbleotis Member Posts: 720 Member
    #22
    I am Another Signet Cell Member

    Hi Maxi,

     

    It is me (marbleotis) your signet cell buddy.  I had stage 3b signet cell.  R Hemichlectomy with 19 nodes taken, 3 were positive.  I went like insane when I read the signet cell on the labs.   I did not know what it was, what it meant.  So I did what every other cancer patient does, become "Dr. Google".  What I found is pre-2007 - do not bother. I worked myself into nutty-girl. My Onc was great and went over all the data.  Rare=so so , more agressinve than regular colon cancer, yes slightly.  But they are seeing it alot more now.  I have clear CT Scans, and the CEA is very low and not moving.

     

    I had the surgery, 6 months of Oxi, 5 FU.  At 1 yr colonoscopy very small polyp found, removed.  Otherwise I am ok.  I spoke to many surgeons and they all say it is not uncommon to have a small polyp within that time frame.  Most important it was found and removed.  If it had stayed, well .... we know that answer.  This is rare/aggressive.  But let's face it all cancer is aggressive when you think about it.  It sounds like you are staying on top of it.  Get additional opinions - whatever makes you feel better.  I am closely watched, have completly changed my diet, exercise routine and life.

    Information is power - we will have to be closely watched, maybe a colonoscopy every 6 months?  That is ok, what ever it takes to keep me NED.  I may pursue other specialists, not sure at this point.  I know it is totally scarry to read the words, "signet cell", trust me .......I really know.  But stay informed, positive, healthy, active and anything that comes your way you can react to.  I was so upset with the polyp, just to find out approx 40% will have small polyps to deal with.  It was removed, and I dealt with it.

     

    Keep us informed.

    marbleotis

  • John23
    John23 Member Posts: 2,122 Member
    #23
    Maxiecat said:

    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

    Hey Alex-

     

    I don’t know why they tell you signet cell cancer is “rare”, since you’ll find a very large percentage of individuals right here that have it, including me.

     

    It’s called “an aggressive” cancer, but it moves slowly; it just manages to spread better, I suppose?

     

    I’ve had my dx in 2006… and many others have been around at least  that long, so try to relax a bit and look towards longevity, rather than demise.

     

    PET scans were devised to outline a tumor with more clarity than a conventional scan. It uses radioactive glucose with the assumption that cancer cells use glucose at a faster rate than a good cell. Unfortunately, good cells that are in the healing process, or of a faster “recycling” organ, can uptake glucose faster than a cancer cell.

    Those are the things that they don’t tell you.

     

    The PET was not designed to be used for “fishing expositions”, or like a “treasure hunt”, it was designed to help surgeons locate a cancer tumor more accurately, not to locate individual cancer cells, or small clusters of cancer cells.

     

    If your surgeon does not require or need a PET, you should take that as a good thing, not as some sort of a mistake. Across the years since 2006, I have never had a PET. I had been ordered one (while I had laid in ICU recovering from a resection), from an oncologist hell-bent on starting me on chemo (while in ICU), but the PET was cancelled as fast as it had been ordered. My surgeon concurred that it was foolish to have a PET while the body was in the healing process.

     

    We’re all a bit scared of cancer, and rightfully so, but we should not allow that fear to point us into directions that can be more harmful than good.

     

    In my case (as the surgeon informed me), I would have “lit up like a Christmas tree” on a PET scan, from all the healing going on. That of course, would have caused the oncologist to insist that chemo was needed to fight the enormous amount of scattered cancer cells inside me.

     

    Don’t fret the absence of a PET scan; if your surgeon doesn’t need one, try to accept the decision.

     

    Best of health to you,

     

    John

     

  • AhleecFightsSRCC
    AhleecFightsSRCC Member Posts: 7
    #24
    SRCC

    Hi Alex-  I was diagnosed with SRCC on 2/21 after an apendectomy biopsy and my ColoRectal surgeon (experienced and well accredited from Sloan Kettering, practicing with U of R Strong Hospital) said they had to google it (encouraging, yeah? Lol.)  The oncologist Im seeing at Wilmot Cancer Institute, also called it rare and diagnosed me with stage 3 (after biopsy of my colectomy and 2 out of 16 positive lymph nodes. 

    I'm trying my damndest to stay positive, get 2nd opinion, change my diet...you name it.  I'm scheduled for my chemo port 4/3 for FOLFOX for 6 months.  

    Anyway, I'm glad I found your thread.  I hope everyone here is in a good place <3

    - Alicia

     

     

    A

  • danker
    danker Member Posts: 1,276 Member
    #25
    age of thread

    Most of this is 4 to 5 years old!!!!

  • ckumar
    ckumar Member Posts: 2
    #26
    Update?

    Hello - How is everyone doing? My husband was diagnosed this year 7/2017 with SRCCC with 7/22 lymph nodes positive and lymphovascular invasion. He was 37 years at diagnosis. We are currently doing treatment in Oklahoma. He had the tumor removed along with part of his colon. Once he's finished with chemo, we're moving closer to family in the San Francisco area. We're looking for reccommendations for oncologists with experience in SRCCC in that area. Any information is greatly appreciated!

    All the best,

    Carissa

  • Trubrit
    Trubrit Member Posts: 5,804 Member
    #27
    ckumar said:

    Update?

    Hello - How is everyone doing? My husband was diagnosed this year 7/2017 with SRCCC with 7/22 lymph nodes positive and lymphovascular invasion. He was 37 years at diagnosis. We are currently doing treatment in Oklahoma. He had the tumor removed along with part of his colon. Once he's finished with chemo, we're moving closer to family in the San Francisco area. We're looking for reccommendations for oncologists with experience in SRCCC in that area. Any information is greatly appreciated!

    All the best,

    Carissa

    Hello Carissa

    Maxicat hasn't been on the forum since 2015, so you may not get a reply. 

    Try posting this to a brand new thread, and see if others can help. I know Easyflip is from the Calif area and may be able to help, though he doesn't frequent the forum quite as much at the moment. 

    Here is the link to the forum homepage https://csn.cancer.org/forum/128

    Tru

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