Signet cell carcinoma found

Matt989
Matt989 Member Posts: 3
in Rare and Other Cancers #1

Hi everyone! This is my first post because I didn't know where else to turn to. I had an appendectomy and the pathology report show grade 3 signet ring cell carcinom. I still have some tests to complete but wondering if anyone knows about this? Could it have started in my appendix and remain encapsulated since my appendix didn't rupture, or does this usually start somewhere else? It's giving me a lot of sleepless nights because I have 3 small boys, a wonderful wife and am only 37 and have so much to do and see. Everything I try reading shows it starts elsewhere and can cause appendicitis. Even the picture of my appendix looks like a huge tumor attached but I'm not a doctor. So has anyone encountered this? My chest x-ray and CEA labs were normal.  

 

Thanks in advance

Matt

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    Appendix Cancer is real

    I was dx'd with it 10 years ago, and am doing well.  Mine isn't signet cell, but one of my acquaintances was diagnosed with the signet cell variety about 15 years ago.  PLEASE, PLEASE GET YOURSELF TO AN APPENDIX CANCER EXPERT!!  No treatment until you meet with an expert; you may have to travel to do so.  There aren't many.  I go to Dr. Paty at Memorial Sloan Kettering in NYC.  There are several experts there (Dr. Nash is now the main name there in Appendix Cancer.)  I'll PM this to you as well, as many people on this forum don't realize that you are not notified when there is a reply.

    Alice

  • Matt989
    Matt989 Member Posts: 3
    edited June 2017 #3
    Thanks Alice. Travel is hard

    Thanks Alice. Travel is hard for me but am being referred to the university of Michigan. I will be undergoing a pet scan and exploratory surgery to find if it spread or not. My appendix was very unusual.

  • abrub
    abrub Member Posts: 2,174 Member
    #4
    Matt989 said:

    Thanks Alice. Travel is hard

    Thanks Alice. Travel is hard for me but am being referred to the university of Michigan. I will be undergoing a pet scan and exploratory surgery to find if it spread or not. My appendix was very unusual.

    You really need an appendix expert

    If at all possible, try to consult with an appendix specialist before any further treatments/surgery. There's one outside of Chicago.  Don't know of any in Michigan.

  • Matt989
    Matt989 Member Posts: 3
    #5
    Do you know the name of the

    Do you know the name of the place in Chicago?

  • abrub
    abrub Member Posts: 2,174 Member
    #6
    Edward Cancer Center in Naperville

    Dr. Salti is the name I know of

  • James_Milne86
    James_Milne86 Member Posts: 2
    #7
    abrub said:

    Appendix Cancer is real

    I was dx'd with it 10 years ago, and am doing well.  Mine isn't signet cell, but one of my acquaintances was diagnosed with the signet cell variety about 15 years ago.  PLEASE, PLEASE GET YOURSELF TO AN APPENDIX CANCER EXPERT!!  No treatment until you meet with an expert; you may have to travel to do so.  There aren't many.  I go to Dr. Paty at Memorial Sloan Kettering in NYC.  There are several experts there (Dr. Nash is now the main name there in Appendix Cancer.)  I'll PM this to you as well, as many people on this forum don't realize that you are not notified when there is a reply.

    Alice

    Hi Alice,

    Hi Alice,

    Your acquaintance who was diagnosed with signet ring 15 years ago, are they still alive? I hope so. I'm very happy to read you're still well 10 years later. 

    My Mum has just been diagnosed with stage 4 signet ring in her stomach. She's 51 and a really tough woman. Always been very healthy and active. Has so much life left to live. This is a real blow to us. She starts chemo next week. We're all hoping she can still have plenty of years yet. 

  • abrub
    abrub Member Posts: 2,174 Member
    #8
    James_Milne86 said:

    Hi Alice,

    Hi Alice,

    Your acquaintance who was diagnosed with signet ring 15 years ago, are they still alive? I hope so. I'm very happy to read you're still well 10 years later. 

    My Mum has just been diagnosed with stage 4 signet ring in her stomach. She's 51 and a really tough woman. Always been very healthy and active. Has so much life left to live. This is a real blow to us. She starts chemo next week. We're all hoping she can still have plenty of years yet. 

    Yes, she's still doing well

    Has your mum got an expert overseeing her care?

    I wish her well.

    Alice

  • Shelly0616
    Shelly0616 Member Posts: 1
    #9
    Sorry to hear about your

    Sorry to hear about your diagnosis. My 62yr old father was diagnosed with stage IV signet ring cell cancer of the appendix that had spread throughout his colon over 2.5 years ago...in January 2015.  After going to many doctors/hospitals and receiving conflicting opinions, (that I as a nurse, and my sister a physician were not confident in) we landed far away from home, in Baltimore Maryland with Dr Gushchin and Dr Sardi At Mercy Hospital. They are surely angels on this earth!!! My father had surgery by Dr Gushchin there at Mercy and received HIPEC treatment at the time of surgery...this is CRITICAL to your treatment. 37 of 42 lymph nodes around the affected areas were positiVe. After surgery he received chemo treatments for some 3-6 months I believe. Today he is cancer free. He is closely monitored of course.  And we know signet ring cell is sneaky and has a high recurrence rate. However, today, he is doing amazing and his doctors are beyond pleased. All others had given him very little hope. I firmly believe Dr Guschin and Dr Sardi are pioneers in this field, as well as Dr Sugarbaker in Washington. Since my fathers diagnosis we have referred many, many people to Mercy. The level of care we experienced at Mercy was unbelievable. I could go on and on. But I would implore you to give Dr Gushchin and Dr.Sardi a call. Their staff is amazing! They will do everything they can to help you!

    https://mdmercy.com/centers-of-excellence/cancer/treatments-we-offer/surgical-oncology/our-doctors/vadim-gushchin-md

     

  • James_Milne86
    James_Milne86 Member Posts: 2
    #10
    abrub said:

    Yes, she's still doing well

    Has your mum got an expert overseeing her care?

    I wish her well.

    Alice

    Thankyou Alice. I'm happy to

    Thankyou Alice. I'm happy to hear people are beating it!

    Yes she has a great Oncologist here in South Australia and a team of terrific nurses looking after her. =)

  • Urszula
    Urszula Member Posts: 1
    edited September 2017 #11
    My husband was dignosed with

    My husband was dignosed with hthe same type of cancer. Is there a way we could have a chat about the treamtment that had such a good outcomes for your father? I wish you and your family all the best. Thank you !

  • cbviau
    cbviau Member Posts: 22
    #12
    Signet Ring Cell

    From what I've read, 90% of Signet Ring Cell Adenocarcinoma begins in the abodmen.  A family member of mine was recently diagnosed with this type of cancer in the rectum, which is rare.  About 1% begins in the rectum. 

    You didn't mention treatment.  Have you began radiation and chemo?  From what I understand, they don't usually use the PET CT scan for Signet Ring Cell Adenocarcinoma.  And the reason why is because this type of cancer forms in sheets in the adeno cells which the PET scan can not pick up.  But don't mark me on that because I am not qualilfied to respond.  I simply go by what I read and what is passed on by doctors.

    I'm sending you and your family positive energy, hugs, and prayers of encouragement.

  • JillPeak
    JillPeak Member Posts: 1
    #13
    cbviau said:

    Signet Ring Cell

    From what I've read, 90% of Signet Ring Cell Adenocarcinoma begins in the abodmen.  A family member of mine was recently diagnosed with this type of cancer in the rectum, which is rare.  About 1% begins in the rectum. 

    You didn't mention treatment.  Have you began radiation and chemo?  From what I understand, they don't usually use the PET CT scan for Signet Ring Cell Adenocarcinoma.  And the reason why is because this type of cancer forms in sheets in the adeno cells which the PET scan can not pick up.  But don't mark me on that because I am not qualilfied to respond.  I simply go by what I read and what is passed on by doctors.

    I'm sending you and your family positive energy, hugs, and prayers of encouragement.

    Appendix Cancer still waiting on staging

    I have recently been diagnosed with appendix cancer, which was originally thought to be Ovarian cancer. I belong to an HMO Kaiser out here in California. I can't find any specialists listed on thier staff. I want to go to one of these speciality Cancer Clinics, does anyone have any experience with insurance referals to MD Anderson in Texas or any of the other cancer centers that specialize in Appendix cancer? This is all new and very overwhealming for me and i must say I am very depressed and in a state of panic. I have been waiting almost 3 weeks for the final tests with the staging, I was told friday that they had to consult with UCSF as to the grade of the biopsy. Please in help or info anyone has would be greatly appriciated.

  • abrub
    abrub Member Posts: 2,174 Member
    #14
    JillPeak said:

    Appendix Cancer still waiting on staging

    I have recently been diagnosed with appendix cancer, which was originally thought to be Ovarian cancer. I belong to an HMO Kaiser out here in California. I can't find any specialists listed on thier staff. I want to go to one of these speciality Cancer Clinics, does anyone have any experience with insurance referals to MD Anderson in Texas or any of the other cancer centers that specialize in Appendix cancer? This is all new and very overwhealming for me and i must say I am very depressed and in a state of panic. I have been waiting almost 3 weeks for the final tests with the staging, I was told friday that they had to consult with UCSF as to the grade of the biopsy. Please in help or info anyone has would be greatly appriciated.

    UCSD has an Appendix Cancer Specialist

    The only one(s) I know of in California - Dr. Andrew Lowy and his team.  You need to get a referral there.  Your insurance company must allow you to see a specialist for this rare cancer (yes, MDA also has specialists).  Ideally, they will allow you to see a specialist as in-network, assuming that Dr. Lowy and/or MDA are out of network.  If you cannot get the proper care in-network, you must be allowed to pursue it.  (My appendix cancer was found as a tumor encompassing my ovary.)

    Good luck, and PM me if you need info.

    Alice

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