abdominal cavity mets, need information and help

Options
Fight for my love
Fight for my love Member Posts: 1,522 Member

Hi all,

Today we got devastated news, finally the Scan showed multiple spots in my husband's abdominal cavity without attached any organs, we both were very shocked. After scans and scans, nothing showed up but elevated CEA, finally this scan found out the spots. but none of them is big, the biggest one is 8mm.oncologist says he can't even biopsy.

The oncologist didn't suggest surgery right this moment, because my husband just had a big surgery last Oct. Oncologist just suggested chemo, he said maybe in the future there is a chance for surgery, but he hinted the chemo might become a long term thing. I just felt we have no hope now.

I would like to know what options might be out there, and what the outcome is. Is still there potential for a cure? Thank you very much for listening.

 

love,

FFMY

«1

Comments

  • traci43
    traci43 Member Posts: 773 Member
    Options
    similar situation

    Hi there - I've been dealing with colon cancer for almost 8 years now.  My mets are always to the abdominal fat or lymph nodes, not the organs, execept for the initial diagnosis which was mets to the omentum (fat) and ovaries.  I've done a lot of chemo over the years and had 4 surgeries.  In some ways it's good and in some ways it's bad that mets are to the abdominal cavity.  Your organs aren't affected, but, I think, there's better chance of a cure if mets are to the liver as it can be removed surgically somewhat easily.  Surgery for abdominal mets is usually long and involved, especially looking for very small mets.  You need an experienced surgeon that knows what to look for.  There is a procedure, HIPEC, where they remove the mets and then do a heated chemo bath to the entire abdomen.  It is more successful for appendix cancer and ovarian cancer than for colon cancer.  It's a big, tough surgery--they call it the Mother of Aall Surgeries for good reason.  I've had it and had recurrences after, but I know of a woman (not on this board) with colon cancer that has been cancer-free for about 6 years post HIPEC.  I'm not sure there are any other options for abdominal mets besides chemo, surgery, and HIPEC.

    In my experience it takes mets of a certain size to even be visible on a scan, so don't feel bad that they could not find it previously.  I've done chemo to the point where my CEA was pretty low (about 1.5) and then stopped and taken some time off (6-12 months) before starting back up again or trying for surgery.   Good luck, Traci

  • abrub
    abrub Member Posts: 2,174 Member
    Options
    traci43 said:

    similar situation

    Hi there - I've been dealing with colon cancer for almost 8 years now.  My mets are always to the abdominal fat or lymph nodes, not the organs, execept for the initial diagnosis which was mets to the omentum (fat) and ovaries.  I've done a lot of chemo over the years and had 4 surgeries.  In some ways it's good and in some ways it's bad that mets are to the abdominal cavity.  Your organs aren't affected, but, I think, there's better chance of a cure if mets are to the liver as it can be removed surgically somewhat easily.  Surgery for abdominal mets is usually long and involved, especially looking for very small mets.  You need an experienced surgeon that knows what to look for.  There is a procedure, HIPEC, where they remove the mets and then do a heated chemo bath to the entire abdomen.  It is more successful for appendix cancer and ovarian cancer than for colon cancer.  It's a big, tough surgery--they call it the Mother of Aall Surgeries for good reason.  I've had it and had recurrences after, but I know of a woman (not on this board) with colon cancer that has been cancer-free for about 6 years post HIPEC.  I'm not sure there are any other options for abdominal mets besides chemo, surgery, and HIPEC.

    In my experience it takes mets of a certain size to even be visible on a scan, so don't feel bad that they could not find it previously.  I've done chemo to the point where my CEA was pretty low (about 1.5) and then stopped and taken some time off (6-12 months) before starting back up again or trying for surgery.   Good luck, Traci

    IntraPeritoneal chemo

    I had Intraperitoneal Chemo (IP) for my my metastatic appendix cancer which had spread throughout my abdominal cavity.  Most places that do colorectal IP chemo use HIPEC (heated chemo done during surgery.)  At Memorial Sloan Kettering in NYC, they remove all visible cancer, place a belly port, and do the IP chemo post-op, which is what I had.  I've been fine since (7 1/2 years since IP chemo).  You need a specialist/specialty location for this process, but it is worth looking into.

    Alice

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options
    traci43 said:

    similar situation

    Hi there - I've been dealing with colon cancer for almost 8 years now.  My mets are always to the abdominal fat or lymph nodes, not the organs, execept for the initial diagnosis which was mets to the omentum (fat) and ovaries.  I've done a lot of chemo over the years and had 4 surgeries.  In some ways it's good and in some ways it's bad that mets are to the abdominal cavity.  Your organs aren't affected, but, I think, there's better chance of a cure if mets are to the liver as it can be removed surgically somewhat easily.  Surgery for abdominal mets is usually long and involved, especially looking for very small mets.  You need an experienced surgeon that knows what to look for.  There is a procedure, HIPEC, where they remove the mets and then do a heated chemo bath to the entire abdomen.  It is more successful for appendix cancer and ovarian cancer than for colon cancer.  It's a big, tough surgery--they call it the Mother of Aall Surgeries for good reason.  I've had it and had recurrences after, but I know of a woman (not on this board) with colon cancer that has been cancer-free for about 6 years post HIPEC.  I'm not sure there are any other options for abdominal mets besides chemo, surgery, and HIPEC.

    In my experience it takes mets of a certain size to even be visible on a scan, so don't feel bad that they could not find it previously.  I've done chemo to the point where my CEA was pretty low (about 1.5) and then stopped and taken some time off (6-12 months) before starting back up again or trying for surgery.   Good luck, Traci

    Thank you so much, Traci. I

    Thank you so much, Traci. I am grateful for your response.  Thank you very much.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options
    abrub said:

    IntraPeritoneal chemo

    I had Intraperitoneal Chemo (IP) for my my metastatic appendix cancer which had spread throughout my abdominal cavity.  Most places that do colorectal IP chemo use HIPEC (heated chemo done during surgery.)  At Memorial Sloan Kettering in NYC, they remove all visible cancer, place a belly port, and do the IP chemo post-op, which is what I had.  I've been fine since (7 1/2 years since IP chemo).  You need a specialist/specialty location for this process, but it is worth looking into.

    Alice

    Thank you, Alice. I really

    Thank you, Alice. I really appreciated your response.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Options
    I'm sorry you got this news.

    Having been through several recurrences, I know how hard it is.

    Do you know how many spots showed up in the scan?  I had a few peritoneal mets (can't remember exact number, maybe 3 or 4) on one go-round, and on another had one large area where the tumor tangled up the peritoneal wall and the small intestine together in one big mess.

    In both these cases, I had regular surgery and it was successful...I've been NED since 2011.

    I think I would want to talk to the most experienced CRC surgeon you can find if possible.  And if the mets are super small, maybe discuss the risks/benefits of waiting a few months to get them larger and easier to find and resect.  As chemo never worked for me, this "watch and wait" mode (supported with frequent scans) followed by surgery worked well.

    Hang in there.  This is all so tough.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options

    I'm sorry you got this news.

    Having been through several recurrences, I know how hard it is.

    Do you know how many spots showed up in the scan?  I had a few peritoneal mets (can't remember exact number, maybe 3 or 4) on one go-round, and on another had one large area where the tumor tangled up the peritoneal wall and the small intestine together in one big mess.

    In both these cases, I had regular surgery and it was successful...I've been NED since 2011.

    I think I would want to talk to the most experienced CRC surgeon you can find if possible.  And if the mets are super small, maybe discuss the risks/benefits of waiting a few months to get them larger and easier to find and resect.  As chemo never worked for me, this "watch and wait" mode (supported with frequent scans) followed by surgery worked well.

    Hang in there.  This is all so tough.

    it was like 5 or 6 spots on

    it was like 5 or 6 spots on his right side of abdominal cavity, scattered, not in one place. Oncologist said surgery is not an option now because my husband hasn't fully recovered from pelvic exenteration in last Oct, it was not because of the location of the small tumors, it is just his body has to be strong enough to stand another open up surgery. Thank you very much, Anna. Do you know any information about the most experienced CRC surgeon? if you don't mind, can you please PM me? thank you.

  • janderson1964
    janderson1964 Member Posts: 2,215 Member
    Options
    I am truly sorry to hear that

    I am truly sorry to hear that but don't give up hope. Especially after reading some of the other posts from folks here who have had similar situations to your husband, and they are all long term survivors.

  • abrub
    abrub Member Posts: 2,174 Member
    Options

    Thank you, Alice. I really

    Thank you, Alice. I really appreciated your response.

    Just sent you a PM

    PS - I had spots and seeding all over my peritoneal cavity, not attached to organs; my surgeon went after all visible cancer and then I had the IP chemo.

    Alice

  • Trubrit
    Trubrit Member Posts: 5,796 Member
    Options
    Contnuing the fight

    I am sorry to hear this news.  I pray that you and your husband will find a great surgeon when he is stronger and recovered fully from his last surgery, and until then that you are able to get him on a great plan that will shrink or maintain the mets. 

    Sending love and prayers your way. 

    Sue - Trubrit

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options
    Trubrit said:

    Contnuing the fight

    I am sorry to hear this news.  I pray that you and your husband will find a great surgeon when he is stronger and recovered fully from his last surgery, and until then that you are able to get him on a great plan that will shrink or maintain the mets. 

    Sending love and prayers your way. 

    Sue - Trubrit

    Thank you both, Sue and Jeff,

    Thank you both, Sue and Jeff, you both are very amazing people. I really appreciated.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Options

    it was like 5 or 6 spots on

    it was like 5 or 6 spots on his right side of abdominal cavity, scattered, not in one place. Oncologist said surgery is not an option now because my husband hasn't fully recovered from pelvic exenteration in last Oct, it was not because of the location of the small tumors, it is just his body has to be strong enough to stand another open up surgery. Thank you very much, Anna. Do you know any information about the most experienced CRC surgeon? if you don't mind, can you please PM me? thank you.

    I don't have any names off the top of my head..

    i am in an HMO and didn't have a lot of options.  What area are you in?  I can do a little research and try to find out for you if you want (and others here may have an idea of some possibilities).  

    I didn't realize he had already gone through the exenteration...poor guy has really been through a lot.  :(

  • jen2012
    jen2012 Member Posts: 1,607 Member
    Options
    I'm so sorry.  We haven't

    I'm so sorry.  We haven't dealt with this, so I have no advice to offer, just support and hugs.  Don't forget about those who have been on long term chemo....hopefully it won't come to that, but it is doable for some. 

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options
    jen2012 said:

    I'm so sorry.  We haven't

    I'm so sorry.  We haven't dealt with this, so I have no advice to offer, just support and hugs.  Don't forget about those who have been on long term chemo....hopefully it won't come to that, but it is doable for some. 

    Thank you, Jen, for your

    Thank you, Jen, for your support and hugs. As you know, it is just so hard to deal with reccurence one after another, really exhausting...

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options
    traci43 said:

    similar situation

    Hi there - I've been dealing with colon cancer for almost 8 years now.  My mets are always to the abdominal fat or lymph nodes, not the organs, execept for the initial diagnosis which was mets to the omentum (fat) and ovaries.  I've done a lot of chemo over the years and had 4 surgeries.  In some ways it's good and in some ways it's bad that mets are to the abdominal cavity.  Your organs aren't affected, but, I think, there's better chance of a cure if mets are to the liver as it can be removed surgically somewhat easily.  Surgery for abdominal mets is usually long and involved, especially looking for very small mets.  You need an experienced surgeon that knows what to look for.  There is a procedure, HIPEC, where they remove the mets and then do a heated chemo bath to the entire abdomen.  It is more successful for appendix cancer and ovarian cancer than for colon cancer.  It's a big, tough surgery--they call it the Mother of Aall Surgeries for good reason.  I've had it and had recurrences after, but I know of a woman (not on this board) with colon cancer that has been cancer-free for about 6 years post HIPEC.  I'm not sure there are any other options for abdominal mets besides chemo, surgery, and HIPEC.

    In my experience it takes mets of a certain size to even be visible on a scan, so don't feel bad that they could not find it previously.  I've done chemo to the point where my CEA was pretty low (about 1.5) and then stopped and taken some time off (6-12 months) before starting back up again or trying for surgery.   Good luck, Traci

    Thank you so much, Traci, you

    Thank you so much, Traci, you are great inspiration to us.  I am so glad that chemo is doing it's job for you to keep your cea so low. I really appreciated your input.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options

    I don't have any names off the top of my head..

    i am in an HMO and didn't have a lot of options.  What area are you in?  I can do a little research and try to find out for you if you want (and others here may have an idea of some possibilities).  

    I didn't realize he had already gone through the exenteration...poor guy has really been through a lot.  :(

    Thank you, Anna, my husband

    Thank you, Anna, my husband is getting treatment in MGH. if you know any good doctors in this area, please let me know.Thank you.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    Options

    Thank you, Anna, my husband

    Thank you, Anna, my husband is getting treatment in MGH. if you know any good doctors in this area, please let me know.Thank you.

    Is MGH...

    Mass General?

  • Easyflip
    Easyflip Member Posts: 588 Member
    Options
    I'm sorry

    to hear about the inoperable spread. I know several people who have had a good response to HIPEC. I wish you the best of luck as you go forward. 

    Easyflip/Richard

  • LivinginNH
    LivinginNH Member Posts: 1,456 Member
    Options

    Thank you, Anna, my husband

    Thank you, Anna, my husband is getting treatment in MGH. if you know any good doctors in this area, please let me know.Thank you.

    Doctors

    Hi,

    Not sure if MGH is doing HIPEC yet...at least they weren't a few years ago.  These were our surgeons - they're excellent.

    HIPEC: - Dr. Martin Goodman - Tufts Medical

    MD is Director of the Peritoneal Surface Malignancy Program.
    In addition to being one of the country's few doctors to perform HIPEC procedures, he has been ranked among the top 1% of surgeons nationwide by U.S. News & World Report. Dr. Goodman is also a recipient of the Schwartz Center Compassionate Caregiver Award.

    Liver: Dr. Kenneth Tanabe - MGH

    Kenneth Kenji Tanabe, MD. Chief, Division of Surgical Oncology. Deputy Clinical Director, MGH Cancer Center. Director, MGH Liver Surgery Program.

    Best wishes,

    Cynthia

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options

    Is MGH...

    Mass General?

    yes, anna, it is Mass

    yes, anna, it is Mass General.

  • Fight for my love
    Fight for my love Member Posts: 1,522 Member
    Options

    Doctors

    Hi,

    Not sure if MGH is doing HIPEC yet...at least they weren't a few years ago.  These were our surgeons - they're excellent.

    HIPEC: - Dr. Martin Goodman - Tufts Medical

    MD is Director of the Peritoneal Surface Malignancy Program.
    In addition to being one of the country's few doctors to perform HIPEC procedures, he has been ranked among the top 1% of surgeons nationwide by U.S. News & World Report. Dr. Goodman is also a recipient of the Schwartz Center Compassionate Caregiver Award.

    Liver: Dr. Kenneth Tanabe - MGH

    Kenneth Kenji Tanabe, MD. Chief, Division of Surgical Oncology. Deputy Clinical Director, MGH Cancer Center. Director, MGH Liver Surgery Program.

    Best wishes,

    Cynthia

    Thank you, Cynthia. I will

    Thank you, Cynthia. I will keep it in mind. I really appreciated.