colon cancer metastasis to ovary

hippiechicks
hippiechicks Member Posts: 509 Member

Wondering if anyone has dealt with metastasis to the ovary where the ovary has leaked into the abdomen?  I had finished my 12 treatments of Folfox in May and within a few months a new tumor popped up in the ovary.  During the hysterectomy it was discovered that the ovary had ruptured leaking it's fluid into the abdomen.  I was wondering what the course of treatment was for anyone in this situation.  I have had a few suggestions and will be seeking a second opinion, but was looking for advise from the real professionals...the survivors!! 

Comments

  • here4lfe
    here4lfe Member Posts: 306 Member
    My wife also

    1. Make sure they type it to make sure it's a metastasis and not a new primary in the ovary

    2. They treated my wife with Irinotecan, Avastin after the ovarian mass was removed.

    Best

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    here4lfe said:

    My wife also

    1. Make sure they type it to make sure it's a metastasis and not a new primary in the ovary

    2. They treated my wife with Irinotecan, Avastin after the ovarian mass was removed.

    Best

    Thank you for the

    Thank you for the information...yes, colon was the primary.  Trying to keep it out of the other organs is my goal now...being faced with some big decisions as several treatment options have been suggested.  I am young ... not 50 yet ... still have school age children, and not getting very good odds from my doctors. Not really thinking the wait and watch option is sounding very good though.

  • smokeyjoe
    smokeyjoe Member Posts: 1,425 Member

    Thank you for the

    Thank you for the information...yes, colon was the primary.  Trying to keep it out of the other organs is my goal now...being faced with some big decisions as several treatment options have been suggested.  I am young ... not 50 yet ... still have school age children, and not getting very good odds from my doctors. Not really thinking the wait and watch option is sounding very good though.

    My colon cancer spread to the

    My colon cancer spread to the ovary.....the actually thought I had ovarian cancer prior to going in for the surgery...surgeons shocked it was colon cancer.   Anyhow, the gyno. said they checked the fluid and it was clear (he said that was good).     But, I do have spread .....spleen etc. was there at surgery don't understand why my spleen wasn't removed at that time,   maybe because they were doing so much major surgery at that time with hysterectomy and colon resection and other stuff that it was just too much at the time, who knows,  and they were performing surgery on me while I had two blood clots in my lungs.    Anyhow....I did 10 months of folfiri, then I took a chemo break where those spots showing on scans sat there doing nothing for 10 months before things became active again,  back to folfiri...avastin with folfiri starts next week.....hoping this works ........folfiri is for me very tolerable, very minimal side effects.

  • jasminsaba
    jasminsaba Member Posts: 157 Member

    Thank you for the

    Thank you for the information...yes, colon was the primary.  Trying to keep it out of the other organs is my goal now...being faced with some big decisions as several treatment options have been suggested.  I am young ... not 50 yet ... still have school age children, and not getting very good odds from my doctors. Not really thinking the wait and watch option is sounding very good though.

    prophylactic HIPEC

    Hi there - I have heard of others in similar situation benefiting from prophylatic HIPEC to address the possibility of spread. Best of luck to you with whatever you decide.

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    smokeyjoe said:

    My colon cancer spread to the

    My colon cancer spread to the ovary.....the actually thought I had ovarian cancer prior to going in for the surgery...surgeons shocked it was colon cancer.   Anyhow, the gyno. said they checked the fluid and it was clear (he said that was good).     But, I do have spread .....spleen etc. was there at surgery don't understand why my spleen wasn't removed at that time,   maybe because they were doing so much major surgery at that time with hysterectomy and colon resection and other stuff that it was just too much at the time, who knows,  and they were performing surgery on me while I had two blood clots in my lungs.    Anyhow....I did 10 months of folfiri, then I took a chemo break where those spots showing on scans sat there doing nothing for 10 months before things became active again,  back to folfiri...avastin with folfiri starts next week.....hoping this works ........folfiri is for me very tolerable, very minimal side effects.

    Thank you for your help... It

    Thank you for your help... It sounds like you have been through a lot!! I wish you well with your new course of treatment.

    Did the fluid from the ovary spill into your abdomen?  My fluids all came back clear as well, but I think because it was loose in the abdomen there is concern for spread and are suggesting radiation to the pelvis area along with the chemo. Was this ever suggested to you??

     

  • hippiechicks
    hippiechicks Member Posts: 509 Member

    prophylactic HIPEC

    Hi there - I have heard of others in similar situation benefiting from prophylatic HIPEC to address the possibility of spread. Best of luck to you with whatever you decide.

    Thank you...I was wondering

    Thank you...I was wondering about that on a prophylatic basis.  I have heard of the treatment but thought it was for confirmed spread only.  That may be exactly what I need.  Have you heard anything about the treatment itself?

     

  • Chelsea71
    Chelsea71 Member Posts: 1,169 Member

    Thank you...I was wondering

    Thank you...I was wondering about that on a prophylatic basis.  I have heard of the treatment but thought it was for confirmed spread only.  That may be exactly what I need.  Have you heard anything about the treatment itself?

     

    This situation warrants

    This situation warrants HIPEC.  Find the best surgeon who specialized in this surgery.  You want a high volume centre.  This could make all the difference for you.  Please look into it.

     

    Chelsea

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    Chelsea71 said:

    This situation warrants

    This situation warrants HIPEC.  Find the best surgeon who specialized in this surgery.  You want a high volume centre.  This could make all the difference for you.  Please look into it.

     

    Chelsea

    Thank you...will check into

    Thank you...will check into this. I was just reading that there are guidlines..hope I fit into them! Cool   I am actually heading to another facility tomorrow and intend to mention this.  I have had several major abdomenal surgeries and don't have much in the way of intestine left...might be an issue.

  • annalexandria
    annalexandria Member Posts: 2,571 Member
    I had an abdominal tumor as well...

    although mine ended up stuck to the uterus.  I did have the full hysterectomy just to be on the safe side.  It was my 5th surgery in less than 3 years, but I haven't had anything come back since Dec. 2011, and I had quite a lot of spread throughout my intestines, lymph nodes, and peritoneum.  So it is possible to get on top of this sort of situation, and gain some significant time, via surgery.  However, as others have said, HIPEC would probably be a good route in case the ruptured ovary spread the cells further in the abdomen.  I would also suggest adding cimetidine (OTC med for heartburn, brand name Tagamet) to your daily routine.  The studies about it suggest that taking it right before and after surgery is best, to prevent spread, but I think taking it right now wouldn't hurt.  If there are cancer cells floating around in there, maybe they haven't had a chance to settle down yet!  I took cimetidine for my last surgery, and so far, it appears that nothing new has popped up...maybe a coincidence, maybe not, there's no way to know, but I will certainly use it again if I need more surgery in the future.  Good luck, and keep us posted.  Ann Alexandria

  • hippiechicks
    hippiechicks Member Posts: 509 Member

    I had an abdominal tumor as well...

    although mine ended up stuck to the uterus.  I did have the full hysterectomy just to be on the safe side.  It was my 5th surgery in less than 3 years, but I haven't had anything come back since Dec. 2011, and I had quite a lot of spread throughout my intestines, lymph nodes, and peritoneum.  So it is possible to get on top of this sort of situation, and gain some significant time, via surgery.  However, as others have said, HIPEC would probably be a good route in case the ruptured ovary spread the cells further in the abdomen.  I would also suggest adding cimetidine (OTC med for heartburn, brand name Tagamet) to your daily routine.  The studies about it suggest that taking it right before and after surgery is best, to prevent spread, but I think taking it right now wouldn't hurt.  If there are cancer cells floating around in there, maybe they haven't had a chance to settle down yet!  I took cimetidine for my last surgery, and so far, it appears that nothing new has popped up...maybe a coincidence, maybe not, there's no way to know, but I will certainly use it again if I need more surgery in the future.  Good luck, and keep us posted.  Ann Alexandria

    wow...I had never heard that

    wow...I had never heard that about cimetidine! I did ask about the HIPEC and was told it was not a good thing for me to do because of the scar tissue I have from my past surgeries that it may cause more...and/or not be effective because the blood would have carried the cells anywhere.  I am having some trouble with this advice.  I have been told to watch closely and wait for it to reappear ... then treat.  I understand the logic...nothing can be seen at this time, but I am not feeling very comfortable with that suggestion.  I have a scan next week to rule out futher spread.  Did you have the HIPEC?

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    wow...I had never heard that

    wow...I had never heard that about cimetidine! I did ask about the HIPEC and was told it was not a good thing for me to do because of the scar tissue I have from my past surgeries that it may cause more...and/or not be effective because the blood would have carried the cells anywhere.  I am having some trouble with this advice.  I have been told to watch closely and wait for it to reappear ... then treat.  I understand the logic...nothing can be seen at this time, but I am not feeling very comfortable with that suggestion.  I have a scan next week to rule out futher spread.  Did you have the HIPEC?

    No, I never had HIPEC.

    The peritoneal impants that I had were dealt with by conventional surgery (I'm not really sure how many there were-not a ton, I don't think).   FWIW, the wait and see approach has worked for me, and I think there are more and more docs out there who are deciding to hold off on treatment until something becomes visible.  In my case, the occasional surgery to remove stuff as it pops up has been very effective, and it does mean that I can take the time to strengthen my immune system and live a decent life in the meantime.

  • hippiechicks
    hippiechicks Member Posts: 509 Member

    No, I never had HIPEC.

    The peritoneal impants that I had were dealt with by conventional surgery (I'm not really sure how many there were-not a ton, I don't think).   FWIW, the wait and see approach has worked for me, and I think there are more and more docs out there who are deciding to hold off on treatment until something becomes visible.  In my case, the occasional surgery to remove stuff as it pops up has been very effective, and it does mean that I can take the time to strengthen my immune system and live a decent life in the meantime.

    Yes, I do agree with the

    Yes, I do agree with the strengthening of the immune system as well as my body.  I am also looking forward to some enjoyment as the past year and a half has been doctors and tests and treatments....but it is scary.

  • abrub
    abrub Member Posts: 2,174 Member
    My original tumor was found encompassing my ovary.

    But it was appendiceal in origin.  It had reached my ovary because at some time in the past, my appendix had ruptured, spewing cancer throughout my abdomen.  The largest tumor grew around my ovary.  Perhaps during your colon surgery, when the colon was breached, cells escaped, and "grabbed onto" the nearest thing - your ovary (as did mine when my appendix fuptured.) My cancer had also seeded onto my omentum and the outside of my colon (I was resected in 3 places.)

    I would want to see you consulting with a major cancer center (I go to Memorial Sloan Kettering) to get their input.  MSK does Intraperitoneal Chemo - different from HIPEC in that it is not done during surgery, but rather repeatedly for a set number of cycles .  However, with scar tissue, you might not be a candidate.

    Yes, second opinion, and go with one of the big cancer centers like MSK or MDA.  There are others - I don't know where you live.

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    abrub said:

    My original tumor was found encompassing my ovary.

    But it was appendiceal in origin.  It had reached my ovary because at some time in the past, my appendix had ruptured, spewing cancer throughout my abdomen.  The largest tumor grew around my ovary.  Perhaps during your colon surgery, when the colon was breached, cells escaped, and "grabbed onto" the nearest thing - your ovary (as did mine when my appendix fuptured.) My cancer had also seeded onto my omentum and the outside of my colon (I was resected in 3 places.)

    I would want to see you consulting with a major cancer center (I go to Memorial Sloan Kettering) to get their input.  MSK does Intraperitoneal Chemo - different from HIPEC in that it is not done during surgery, but rather repeatedly for a set number of cycles .  However, with scar tissue, you might not be a candidate.

    Yes, second opinion, and go with one of the big cancer centers like MSK or MDA.  There are others - I don't know where you live.

    Thank you for your help!! I

    Thank you for your help!! I tried to get to Sloan but they told me they would not see me because "my disease was too wide spread and they are not taking second opinion patients".  They referred me to Dana Faber...I went there last week and they basically told me to get my strength together with no treatment right now because I am NED and it would be pointless to treat if they can't monitor if it is working...it would only waste my energy and strength.  I am not sure how I feel about this...If I am Ned wouldn't this be the time to try those exact treatments?? I am so confused here and feel like I would be just giving up if I just wait around for it all to appear.

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    abrub said:

    My original tumor was found encompassing my ovary.

    But it was appendiceal in origin.  It had reached my ovary because at some time in the past, my appendix had ruptured, spewing cancer throughout my abdomen.  The largest tumor grew around my ovary.  Perhaps during your colon surgery, when the colon was breached, cells escaped, and "grabbed onto" the nearest thing - your ovary (as did mine when my appendix fuptured.) My cancer had also seeded onto my omentum and the outside of my colon (I was resected in 3 places.)

    I would want to see you consulting with a major cancer center (I go to Memorial Sloan Kettering) to get their input.  MSK does Intraperitoneal Chemo - different from HIPEC in that it is not done during surgery, but rather repeatedly for a set number of cycles .  However, with scar tissue, you might not be a candidate.

    Yes, second opinion, and go with one of the big cancer centers like MSK or MDA.  There are others - I don't know where you live.

    Sorry, but may I ask what MDA

    Sorry, but may I ask what MDA stands for?? I am willing to travel and live in the New England.

  • abrub
    abrub Member Posts: 2,174 Member

    Sorry, but may I ask what MDA

    Sorry, but may I ask what MDA stands for?? I am willing to travel and live in the New England.

    MDA = MD Anderson in Texas

    But Dana Farber is also right up there with the tops - one I would have mentioned for a fellow New-Englander.  Roswell Park in Buffalo, NY is also tops.  I just didn't want to list places that were irrelevant.

    However, as Dana Farber is where I considered going for a 4th opinion, I know that there you are in excellent hands (assuming you are comfortable with your oncologist.)  I must admit that I met one total a$$hole at MSK, who had me dead and buried by now, yet he was supposedly a top oncologist.  So even at the best intitutions, there are bad drs.

    While you are NED, it might make sense to push to see someone at MSK about getting IP chemo.  Or maybe Dana Farber does that as well.  If the spread to your ovary was comparable to mine - i.e. by seeding of the tumor, rather than through the blood or lymphatic system, then there may be more cancer cells in your belly waiting for their opportunity to grab on and grow.  Perhaps you might send a letter to a dr at MSK or elsewhere with your concerns, as that may be the only way to get through.  (I go to Dr. Paty at MSK).

     

  • hippiechicks
    hippiechicks Member Posts: 509 Member
    abrub said:

    MDA = MD Anderson in Texas

    But Dana Farber is also right up there with the tops - one I would have mentioned for a fellow New-Englander.  Roswell Park in Buffalo, NY is also tops.  I just didn't want to list places that were irrelevant.

    However, as Dana Farber is where I considered going for a 4th opinion, I know that there you are in excellent hands (assuming you are comfortable with your oncologist.)  I must admit that I met one total a$$hole at MSK, who had me dead and buried by now, yet he was supposedly a top oncologist.  So even at the best intitutions, there are bad drs.

    While you are NED, it might make sense to push to see someone at MSK about getting IP chemo.  Or maybe Dana Farber does that as well.  If the spread to your ovary was comparable to mine - i.e. by seeding of the tumor, rather than through the blood or lymphatic system, then there may be more cancer cells in your belly waiting for their opportunity to grab on and grow.  Perhaps you might send a letter to a dr at MSK or elsewhere with your concerns, as that may be the only way to get through.  (I go to Dr. Paty at MSK).

     

    Thank you for that advise...I

    Thank you for that advise...I will be doing so this week. I asked that very question to DF and was told that the chances are just too great that cells have traveled elsewhere from the abdomen.  Guess I need a third opinion! CT scan tomorrow and meeting with oncologist. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    Thank you for your help!! I

    Thank you for your help!! I tried to get to Sloan but they told me they would not see me because "my disease was too wide spread and they are not taking second opinion patients".  They referred me to Dana Faber...I went there last week and they basically told me to get my strength together with no treatment right now because I am NED and it would be pointless to treat if they can't monitor if it is working...it would only waste my energy and strength.  I am not sure how I feel about this...If I am Ned wouldn't this be the time to try those exact treatments?? I am so confused here and feel like I would be just giving up if I just wait around for it all to appear.

    Actually, that is exactly my situation...

    my doc's initial approach was to do chemo, even though my scans were clean after my first surgery.  The chemo didn't work, and I ended up wasting 6 months that I could have spent regaining strength (and it was a very crappy 6 months, too, I might add).  After another round of surgery, I was once again NED, did three months of a different chemo.  Same result...more spread, another surgery.  At that point, he decided to skip the chemo (thank goodness!), and just keep an eye on things, do surgery as needed.  Two more surgeries later, I've been NED for over a year.   This could change at any time, of course, but if it does, then I'll have another surgery.  I'm kind of an expert at this point.  I can understand how it would feel scary, but it may actually be a really good approach for you, given the circumstances.  AA

  • hippiechicks
    hippiechicks Member Posts: 509 Member

    Actually, that is exactly my situation...

    my doc's initial approach was to do chemo, even though my scans were clean after my first surgery.  The chemo didn't work, and I ended up wasting 6 months that I could have spent regaining strength (and it was a very crappy 6 months, too, I might add).  After another round of surgery, I was once again NED, did three months of a different chemo.  Same result...more spread, another surgery.  At that point, he decided to skip the chemo (thank goodness!), and just keep an eye on things, do surgery as needed.  Two more surgeries later, I've been NED for over a year.   This could change at any time, of course, but if it does, then I'll have another surgery.  I'm kind of an expert at this point.  I can understand how it would feel scary, but it may actually be a really good approach for you, given the circumstances.  AA

    I am leaning towards this

    I am leaning towards this today...but I am still gathering information.  So draining. 

    It sounds like you have been through so much! Certainly admire your strength! Over how long of a period of time did you have the surgeries? Glad you are doing so well now and wish you well with continued NED. 

  • annalexandria
    annalexandria Member Posts: 2,571 Member

    I am leaning towards this

    I am leaning towards this today...but I am still gathering information.  So draining. 

    It sounds like you have been through so much! Certainly admire your strength! Over how long of a period of time did you have the surgeries? Glad you are doing so well now and wish you well with continued NED. 

    I had five surgeries...

    between Sept. 2009 and Dec. 2011.  Big 'uns, too.  My surgeon is a fan of open surgeries, so he can get in there and really look around.  I've been thrilled to get a year off, as the biannual ritual disembowelment was getting old.