Not sure if I belong here

RobLee
RobLee Member Posts: 269 Member
edited August 2018 in Peritoneal Cancer #1

This has all happened just within the past month.  My GP ordered a CT scan three weeks ago because my pancreatic enzymes were off.  The CT revealed a golf ball sized mass in the small bowel mesentary, which is part of the peritoneum that supplies blood to the small intestine.  He referred me to a gastroenterologist who informed me that this type of mass is usually carcinoid, and sent me to a surgeon to perform a biopsy.

I just saw the surgeon on Friday and he said that where the mass is located it cannot be accessed for something like a needle biopsy (because of all the blood vessels and such) and that he would have to actually remove the mass to confirm whether or not it is malignant... also removing the affected part of the bowel in the process. He may be able to do it laproscopically, but there's a one in three chance that it may need to be open surgery.

A small bowel mesentary carcinoid is rare enough.  Typically carcinoid tumors affect the pancreas (as Arethra Franklin had), the colon, rectum or appendix. Carcinoid belongs to the general category of neuroendocrine tumors.  There are some possible non-carcinoid causes of this type of mass, however they are extremely rare, with only a few hundred cases reported. So it looks like the writing is on the wall.

This is not my first cancer, and I recognize some names here from the CSN chatroom.  But I did a search for mesentary and got zero hits.  So far I have found some information online but have been unable to find any support groups or online forums other than for those specific organs.  The physicians involved so far all seem to be familiar with the disease but I'm wondering why I'm not finding others with this particular condition.

I can list some links to neuroendocrine sites but otherwise most people have never heard of the mesentary.  Admittedly before this hit me I hadn't either.  The surgeon told me that I need to act in weeks not months.  There are some complicating factors but without others to bounce some of this off of I only have what the docs tell me to go on.  Please, I know everyone is well intended, but I don't need any "so sorry, be strong" replies (okay, well maybe a few).  Has anyone been thru this or perhaps in your own research run across information that might be helpful?

I did have a previous bowel resection at the cecum forty years ago and it was pretty rough, even though I was young at the time.  I thought I was handling the news well, but the more it sinks in, the more scared I become.

Comments

  • abrub
    abrub Member Posts: 2,174 Member
    #2
    Get in the hands of experts

    If you can, get to a major cancer center that sees the odd/rare cancers.  You want the best hands on (in) you.

  • abrub
    abrub Member Posts: 2,174 Member
    #3
    RobLee said:

    Thanks Alice

    I did get signed up at Moffitt, though they can't see me until October... a week after my scheduled surgery.  I'm hoping they can squeeze me in sooner.  In the meantime I've been reading more about neuroendocrine tumors.  There is not much in the way of support groups.  There appears to be no forums here on CSN or any other cancer message board  (odd, as the mesentary forms part of the peritoneum, and it seems everyone here has a diagnosis).  But there is a carcinoid group on FB.

    It's odd... having cancer is lonely enough, but having a cancer that is not one of the "popular" ones is downright desolate.  I've also posted in the "rare and other cancers" forum here at https://csn.cancer.org/comment/1638946#comment-1638946

    There doesn't seem to be much activity here in the peritoneal forum, and even less in the rare cancers forum.

    Are they considering HIPEC?

    If not, you may want a specialist visit before your surgery to see if that might be an option for you. If it is, it's definitely worth postponing surgery. 

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

    Thanks Alice

    I did get signed up at Moffitt, though they can't see me until October... a week after my scheduled surgery.  I'm hoping they can squeeze me in sooner.  In the meantime I've been reading more about neuroendocrine tumors.  There is not much in the way of support groups.  There appears to be no forums here on CSN or any other cancer message board  (odd, as the mesentary forms part of the peritoneum, and it seems everyone here has a diagnosis).  But there is a carcinoid group on FB.

    It's odd... having cancer is lonely enough, but having a cancer that is not one of the "popular" ones is downright desolate.  I've also posted in the "rare and other cancers" forum here at https://csn.cancer.org/comment/1638946#comment-1638946

    There doesn't seem to be much activity here in the peritoneal forum, and even less in the rare cancers forum.

    Adding to my note above

    There are other forms of IntraPeritoneal Chemo used for peritoneal mets.  I had EPIC, which is done after surgical debulking, via a belly port.  HIPEC is done during surgical debulking.  In both cases, essentially all visible tumor must be removed, because these chemos only penetrate a few cells deep.

  • RobLee
    RobLee Member Posts: 269 Member
    #5
    Thanks Alice

    I did get signed up at Moffitt, though they can't see me until October... a week after my scheduled surgery.  I'm hoping they can squeeze me in sooner.  In the meantime I've been reading more about neuroendocrine tumors.  There is not much in the way of support groups.  There appears to be no forums here on CSN or any other cancer message board  (odd, as the mesentary forms part of the peritoneum, and it seems everyone here has a diagnosis).  But there is a carcinoid group on FB.

    It's odd... having cancer is lonely enough, but having a cancer that is not one of the "popular" ones is downright desolate.  I've also posted in the "rare and other cancers" forum here at https://csn.cancer.org/comment/1638946#comment-1638946

    There doesn't seem to be much activity here in the peritoneal forum, and even less in the rare cancers forum.

  • Scout012
    Scout012 Member Posts: 5
    edited October 2018 #6
    abrub said:

    Adding to my note above

    There are other forms of IntraPeritoneal Chemo used for peritoneal mets.  I had EPIC, which is done after surgical debulking, via a belly port.  HIPEC is done during surgical debulking.  In both cases, essentially all visible tumor must be removed, because these chemos only penetrate a few cells deep.

    Abrub...I qas diagnosed with

    Abrub...I qas diagnosed with peritoneal cancer in December and have had about 12 treatments.  Was on fulfox for about 8 treatments and now full furry with cetuximab (not sure of spelling).  While my CA 125 number is 8, there is too much disease on my intestine to debulk and do the HIPEC.  Right now I am told I will be on chemo for the rest of my life cause the type of cancer is aggressive and likely wont be killed from the chemo, just sustained.

    Didnt know if you had a similar experience or know of others that might have as well.

     

    Thanks

  • RobLee
    RobLee Member Posts: 269 Member
    #7
    Week at Moffitt was inconclusive

    Well, I spent the last week of September at Moffitt cancer center and had a number of tests, including an Octreoscan, and all were inconclusive. The O-scan showed the same mass that appeared in the CT scan.  And all the abnormal blood tests can be explained as side effects of medications that I take.  So the surgical removal originally scheduled for the first Monday in October has now been rescheduled for the last Monday in October.

  • abrub
    abrub Member Posts: 2,174 Member
    #8
    Scout012 said:

    Abrub...I qas diagnosed with

    Abrub...I qas diagnosed with peritoneal cancer in December and have had about 12 treatments.  Was on fulfox for about 8 treatments and now full furry with cetuximab (not sure of spelling).  While my CA 125 number is 8, there is too much disease on my intestine to debulk and do the HIPEC.  Right now I am told I will be on chemo for the rest of my life cause the type of cancer is aggressive and likely wont be killed from the chemo, just sustained.

    Didnt know if you had a similar experience or know of others that might have as well.

     

    Thanks

    Sorry for not responding sooner

    I just saw this.  Are you at a specialty cancer center?  Is the tumor colorectal or ovarian in type?  I would look to experts for this.  I go to MSK.

  • Scout012
    Scout012 Member Posts: 5
    #9
    abrub said:

    Sorry for not responding sooner

    I just saw this.  Are you at a specialty cancer center?  Is the tumor colorectal or ovarian in type?  I would look to experts for this.  I go to MSK.

    I just saw your comment

    Airub...they believe it started in the appendix.  I sent my information to Sloan, but they agree with the Dr. in Pittsburgh that I am not a candidate and won't even meet with me.  I am sending to Dr. Loggie in Omaha, who is also another surgeon that specializes in the HIPEC, been doing it for years.  I am waiting to hear back, just sent my information yesterday.  MD Anderson in Texas is also on my hit list.  Just frustrating that my CA 125 number is 7, but I have been told too much disease to proceed.  It doesn't help that I have the signet ring, which is the most aggressive form.  I am looking forward to meeting with Dr. Loggie...so we shall see what he recommends.

  • abrub
    abrub Member Posts: 2,174 Member
    #10
    Scout012 said:

    I just saw your comment

    Airub...they believe it started in the appendix.  I sent my information to Sloan, but they agree with the Dr. in Pittsburgh that I am not a candidate and won't even meet with me.  I am sending to Dr. Loggie in Omaha, who is also another surgeon that specializes in the HIPEC, been doing it for years.  I am waiting to hear back, just sent my information yesterday.  MD Anderson in Texas is also on my hit list.  Just frustrating that my CA 125 number is 7, but I have been told too much disease to proceed.  It doesn't help that I have the signet ring, which is the most aggressive form.  I am looking forward to meeting with Dr. Loggie...so we shall see what he recommends.

    Bartlett's team at UPMC is one of the best in the world

    As is Niash at Sloan.  I hope someone can help you.

     

    Alice

  • Scout012
    Scout012 Member Posts: 5
    edited October 2018 #11
    abrub said:

    Bartlett's team at UPMC is one of the best in the world

    As is Niash at Sloan.  I hope someone can help you.

     

    Alice

    Yes

    And that is why I tried to send to Nash...figured I would get a consultation at minimum...

Discussion Boards