Post laparoscopic hysterectomy (morcellation) of endometrial adenocarcioma

Hi. I am trying to find anyone who has had a laparoscopic hysterectomy (morcellation) and found out AFTER the surgery that they had endometrial adenocarcinoma.  I am finding many scary stories.  Does this procedure always spread the cancer?

 

Comments

  • molimoli
    molimoli Member Posts: 514
    laparoscopic surgery.

    I had heard that laparoscopic surgery  because of the method can cause  spread,therefore I reasoned the method in my head , then I refused it and insisted on vaginal  complete hysterectomy.

     

    Method; Diseased  organs are cut up into small pieces and pulled through the small openings in abdomen, My question to surgeon,  What happens to bits of cancer cells that may fall off in my abdominal cavity  enroute,  and those tiny bits thats left at   site  from the cuttings ?  will they not stick to whatever organs they fall on,?  " We hope that  doesn't happen ",was the answer   so for that and other reasons   I declined the method.

    However,I had uterus,  overies  and fallopian tubes  removed  completely intact ,just the connecting  ligaments and tissues were cut not the organs themselves, none of those organs were opened inside of my body and was sent to pathology  dept to be disected.   YET  on this date 9 months later  recurrence happened in my abdomen . even with no lymph node involvement  at surgery and even to date ,no lymph node involvement.  It begs the question, How could this be ?  NO BODY ALIVE KNOWS.

    Our guess is as good as the doctors , They don't know much about this cancer  neither do we.  So once your surgery is already done you can't change anything so don't import worry ,If you haven't yet had surgery then reach out to the doctors for answers then do your analysis and make decisions accordingly.

     

     

     

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    molimoli said:

    laparoscopic surgery.

    I had heard that laparoscopic surgery  because of the method can cause  spread,therefore I reasoned the method in my head , then I refused it and insisted on vaginal  complete hysterectomy.

     

    Method; Diseased  organs are cut up into small pieces and pulled through the small openings in abdomen, My question to surgeon,  What happens to bits of cancer cells that may fall off in my abdominal cavity  enroute,  and those tiny bits thats left at   site  from the cuttings ?  will they not stick to whatever organs they fall on,?  " We hope that  doesn't happen ",was the answer   so for that and other reasons   I declined the method.

    However,I had uterus,  overies  and fallopian tubes  removed  completely intact ,just the connecting  ligaments and tissues were cut not the organs themselves, none of those organs were opened inside of my body and was sent to pathology  dept to be disected.   YET  on this date 9 months later  recurrence happened in my abdomen . even with no lymph node involvement  at surgery and even to date ,no lymph node involvement.  It begs the question, How could this be ?  NO BODY ALIVE KNOWS.

    Our guess is as good as the doctors , They don't know much about this cancer  neither do we.  So once your surgery is already done you can't change anything so don't import worry ,If you haven't yet had surgery then reach out to the doctors for answers then do your analysis and make decisions accordingly.

     

     

     

    Morcellation

    This method was in the news some time ago.  I thought it had surely stopped being done this way.  How awful.  When I read my path report, I was impressed to read what had been done to prevent seeding.  The organs were placed in a bag, the surgeon regloved ( more that I don't recall), then bag was removed vaginally.

  • laura25
    laura25 Member Posts: 181 Member
    It happened to me

    That's how my uterine cancer was found.  I had no idea I had cancer until after the procedure was done.

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    laura25 said:

    It happened to me

    That's how my uterine cancer was found.  I had no idea I had cancer until after the procedure was done.

    This has been a newsworthy item

    because it happened to a physician who went in for what she thought was a routine hysterectomy.  and even with her knowledge, she didn't "get it" and had laparoscopic surgery with everything being removed chopped up in a bag via the small incisions.  And guess what?

    I was completely naive before my robotic assisted laparoscopic hysterectomy but for some reason I asked "how will you get it out"?  At that time, I was told that whenever cancer is suspected, organs are removed intact, so while I had laparoscopic surgery, my uterus, ovaries, fallopian tubes and I assume lymph nodes were all removed intact,  vaginally.  Glad I was asleep. ...

    I hope the morcellation procedures will cease to exist, the bottom line is they really don't know if everything is ok, until it is out and sent to pathology.  I guess it is a known risk yet it is still happening.  So sorry that it happened to you.

    Suzanne

  • Tarans
    Tarans Member Posts: 13

    This has been a newsworthy item

    because it happened to a physician who went in for what she thought was a routine hysterectomy.  and even with her knowledge, she didn't "get it" and had laparoscopic surgery with everything being removed chopped up in a bag via the small incisions.  And guess what?

    I was completely naive before my robotic assisted laparoscopic hysterectomy but for some reason I asked "how will you get it out"?  At that time, I was told that whenever cancer is suspected, organs are removed intact, so while I had laparoscopic surgery, my uterus, ovaries, fallopian tubes and I assume lymph nodes were all removed intact,  vaginally.  Glad I was asleep. ...

    I hope the morcellation procedures will cease to exist, the bottom line is they really don't know if everything is ok, until it is out and sent to pathology.  I guess it is a known risk yet it is still happening.  So sorry that it happened to you.

    Suzanne

    <<I hope the morcellation</b>
    <<I hope the morcellation procedures will cease to exist>>
    It mostly has. Many insurance companies will no longer cover it.  You can still have a vaginal hysterectomy, but it won't involve morcellation.  This is good. My Mom recovered from her vaginal hysterectomy at 75 far better and faster than I did an open hysterectomy at 54.  In  my case, a vaginal hysterectomy wasn't even considered given that I already had a biopsy showing that I had an aggressive cancer. 
  • NoTimeForCancer
    NoTimeForCancer Member Posts: 3,493 Member

    This has been a newsworthy item

    because it happened to a physician who went in for what she thought was a routine hysterectomy.  and even with her knowledge, she didn't "get it" and had laparoscopic surgery with everything being removed chopped up in a bag via the small incisions.  And guess what?

    I was completely naive before my robotic assisted laparoscopic hysterectomy but for some reason I asked "how will you get it out"?  At that time, I was told that whenever cancer is suspected, organs are removed intact, so while I had laparoscopic surgery, my uterus, ovaries, fallopian tubes and I assume lymph nodes were all removed intact,  vaginally.  Glad I was asleep. ...

    I hope the morcellation procedures will cease to exist, the bottom line is they really don't know if everything is ok, until it is out and sent to pathology.  I guess it is a known risk yet it is still happening.  So sorry that it happened to you.

    Suzanne

    Suzanne, my mother was

    Suzanne, my mother was convinced I had this type of surgery and I told her  I would ask the gyn onc.  He said anytime they (my group of surgeons?) suspect cancer they never consider mocileration.

    Heck, I have one larger incision scar and my gyn asked "what's that?"  When I saw the gyn onc it was because he said he had to put his hand inside and feel around - something the robot can't do.  My gyn onc is a big guy - like 6' 3" at least!  He has hands to match!!

  • HellieC
    HellieC Member Posts: 524 Member
    molimoli said:

    laparoscopic surgery.

    I had heard that laparoscopic surgery  because of the method can cause  spread,therefore I reasoned the method in my head , then I refused it and insisted on vaginal  complete hysterectomy.

     

    Method; Diseased  organs are cut up into small pieces and pulled through the small openings in abdomen, My question to surgeon,  What happens to bits of cancer cells that may fall off in my abdominal cavity  enroute,  and those tiny bits thats left at   site  from the cuttings ?  will they not stick to whatever organs they fall on,?  " We hope that  doesn't happen ",was the answer   so for that and other reasons   I declined the method.

    However,I had uterus,  overies  and fallopian tubes  removed  completely intact ,just the connecting  ligaments and tissues were cut not the organs themselves, none of those organs were opened inside of my body and was sent to pathology  dept to be disected.   YET  on this date 9 months later  recurrence happened in my abdomen . even with no lymph node involvement  at surgery and even to date ,no lymph node involvement.  It begs the question, How could this be ?  NO BODY ALIVE KNOWS.

    Our guess is as good as the doctors , They don't know much about this cancer  neither do we.  So once your surgery is already done you can't change anything so don't import worry ,If you haven't yet had surgery then reach out to the doctors for answers then do your analysis and make decisions accordingly.

     

     

     

    Morcellation debate

    This debate has also been going on in the UK.  I had no idea this procedure even existed and I am horrified that it should be performed on anyone, whether or not cancer is suspected.  Womb cancer is a sneaky beast and can be there even when it's not expected!  After atypical hyperplasia was found during a D&C, I had an "open" hysterectomy, with everything removed intact.  My surgeon wouldn't consider anything else - he wanted a good look around!  Pathology came back clear - no cancer.  Even with all that care, I had a "recurrence" in the pelvis 7 years later.  Like Molimoli, no one can explain it.  I have no lymph node or organ involvement.  At first it came back at the vaginal vault, which was treated with radiotherapy, then surgery and chemo.  Then it came back again on the pelvic sidewall.  Surgery not possible due to the location, so now on anti-hormone therapy (tamoxifen) and finished a course of Cyberknife radiotherapy last October (just had a scan and will know in a week or two if it has had any effect).  I don't believe I will ever be NED again, but I have adjusted to a new normal and I enjoy every day.  I have even started helping half a day a week at a horse rescue centre - something I never thought I would have the energy to do ever again!

    Kindest wishes
    Helen

  • molimoli
    molimoli Member Posts: 514
    HellieC said:

    Morcellation debate

    This debate has also been going on in the UK.  I had no idea this procedure even existed and I am horrified that it should be performed on anyone, whether or not cancer is suspected.  Womb cancer is a sneaky beast and can be there even when it's not expected!  After atypical hyperplasia was found during a D&C, I had an "open" hysterectomy, with everything removed intact.  My surgeon wouldn't consider anything else - he wanted a good look around!  Pathology came back clear - no cancer.  Even with all that care, I had a "recurrence" in the pelvis 7 years later.  Like Molimoli, no one can explain it.  I have no lymph node or organ involvement.  At first it came back at the vaginal vault, which was treated with radiotherapy, then surgery and chemo.  Then it came back again on the pelvic sidewall.  Surgery not possible due to the location, so now on anti-hormone therapy (tamoxifen) and finished a course of Cyberknife radiotherapy last October (just had a scan and will know in a week or two if it has had any effect).  I don't believe I will ever be NED again, but I have adjusted to a new normal and I enjoy every day.  I have even started helping half a day a week at a horse rescue centre - something I never thought I would have the energy to do ever again!

    Kindest wishes
    Helen

    I WISH YOU continued energy spurts.

    Wonderful Helen ,you seem to be taking things in it's stride, getting out doing something you love, thats great.   sorry about the recurrences  I wish them away 

    .  but the journey comes with them, it seems , These uterine diseases are all so resistant to treatment ,with  only luck of the draw long remission, that seem to be all that we can hope for realistically .

    Have you had much side effects from the treatments you have had,? Do you feel comfortable sharing?,if you don't  that's ok too. WE all understand  'not feeling up to it'.

     Happy to hear the acceptance of the new normal. Acceptance lightened my load, gave me peace of mind and steared me away from the the unclimbable mountains to little hills that I can climb one day at a time.

    I found that acceptance In Sept  when one of  my oncologist [  head of the dept ]  said,  "Don't waste precious time worrying  about if it's coming back I can assure you it will always find it's way back, no matter what we do  it"s the when that we will try to control not the if,  until someone finds the cure I am  your UPSC manager that.s all.. " and in true  Peewe Hermon Style  I  blurted out  " I knew that"  She Shook her head  ,rolled her eyes  gave me a squeeze on the shoulder, She knew that I sensed that but needed to hear it from her,   That was my AHA !! moment. Worry will change nothing.I began to live again

                                                                                 Moli. 

  • HellieC
    HellieC Member Posts: 524 Member
    molimoli said:

    I WISH YOU continued energy spurts.

    Wonderful Helen ,you seem to be taking things in it's stride, getting out doing something you love, thats great.   sorry about the recurrences  I wish them away 

    .  but the journey comes with them, it seems , These uterine diseases are all so resistant to treatment ,with  only luck of the draw long remission, that seem to be all that we can hope for realistically .

    Have you had much side effects from the treatments you have had,? Do you feel comfortable sharing?,if you don't  that's ok too. WE all understand  'not feeling up to it'.

     Happy to hear the acceptance of the new normal. Acceptance lightened my load, gave me peace of mind and steared me away from the the unclimbable mountains to little hills that I can climb one day at a time.

    I found that acceptance In Sept  when one of  my oncologist [  head of the dept ]  said,  "Don't waste precious time worrying  about if it's coming back I can assure you it will always find it's way back, no matter what we do  it"s the when that we will try to control not the if,  until someone finds the cure I am  your UPSC manager that.s all.. " and in true  Peewe Hermon Style  I  blurted out  " I knew that"  She Shook her head  ,rolled her eyes  gave me a squeeze on the shoulder, She knew that I sensed that but needed to hear it from her,   That was my AHA !! moment. Worry will change nothing.I began to live again

                                                                                 Moli. 

    That "AHA" moment.....

    You describe it so well.  My "aha" moment came when the third recurrence appeared.  By then, I knew that if it had survived radiotherapy, two lots of surgery and chemo, that it wasn't going to lay down and die with any of the currently known treatments.  But neither was I, darnit!  To be honest, it was a horrendous week.  We'd just moved house the day before the news of the 3rd recurrence and my dearly loved dad died a few days later. 

     But I picked myself up, got on with what had to be done and decided that whether the time left was long or short, I was going to enjoy it, get rid of things that stress me (like work) and LIVE!  I don't have a bucket list, I just enjoy each day.  But I am a little less tolerant of spending time doing things that I don't enjoy!

    As for side effects.  Well, the second surgery was hard.  It involved a colostomy which took some getting used to.  But it really has just become a part of my life now and I don't really think about it much. The chemo was tough while it lasted but I am so lucky that I have no lasting side effects from it apart from a very sllight numbness in my big toes some days!  The hormone therapy is much more manageable.  Apart from the hot flashes and night sweats I really wouldn't know that I was taking anything!

    Now I wait to hear whether the Cyberknife radiotherapy that I had in October has had any effect.  In the meantime, I stay on tamoxifen to starve the little devil of what it needs to grow!  I feel well and, apart from a slight lowness of mood, caused by the awful wet, dark British winter, I am fine. 

    As you say, worry will change nothing.  I don't think anyone has ever slid into their grave thinking "I wish I'd worried more"!

    Kindest wishes
    Helen

     

  • Linda1234
    Linda1234 Member Posts: 11
    Yes, that is exactly what

    Yes, that is exactly what happened. The doctor performed a laporoscopic robotoic davinci hysterectomy. A week later at the follow up, he told my Mom there was cancer. The uterus (and cancerous tumor) were morcellated. My Mom was diagnosed with MMMT in Oct 2014. We had to be aggressive after this "surgical spill". So Mom endured 33 rounds of external/internal radiation and 6 rounds of chemotherapy. Dealing with chemo for a year and the ongoing effects of radiation has been awful, but Mom has a positive attitude. She had been clear for 2 years. However, over the last month she had been extremely fatigued and her stomach extended. She also had stomach pains. Her one year PET Scan was scheduled in March but she moved it up a month due to these symptoms. Today we found out the CT-PET Scan shows the tumor has returned. We are located in Southeast Florida, and hope the doctors here will make the best decisions to treat this very rare and aggressive cancer. Mom thought we had dealt with this and could move on, but always looking over her shoulder. The doctors say it will likely be chemo and surgery to remove the mass. Has anyone else had such a recurrence? Do you know of what type of chemo or other treatment has proven most effective to treat recurrence? 

  • SMD15
    SMD15 Member Posts: 32
    So relieved to have found this thread

    I was diagnosed with anal cancer (very rare) in March of this year.  I also have been diagnosed with dysplasia on my cervix and was scheduled for a LEEP.  These cancers are related.  I have been experiencing pain in my right ovary, so the doctor did a pelvic ultrasound.  Fibroids were found, so condsidering my other history, I am to discuss a hysterectomy next week with him.  My reason for posting is that the nurse explained he does the da vinci method with morcellation.  I had remembered seeing something about this spreading cancer if cancer is present from several months ago.  I have been researching this for the last several days and am horrified.  My doctor is on vacation this week, so I cannot speak with him.  I don't even really know him, as I am a new patient.  I am standing my ground and refusing this type hysterectomy.  Granted I have to give him a chance to give me other options and not make assumptions, but my question is this ... Why in the world would any doctor take a chance?  Sure, as I have read the odds are low, but again why take a chance?  The odds are low for a lot of things but since I am already one of the few that will get anal cancer this year, seems my odds went up just with that fact alone.  I am also curious as to why there is not more outrage.  This type of surgery should be banned ... period. 

  • ConnieSW
    ConnieSW Member Posts: 1,688 Member
    SMD15 said:

    So relieved to have found this thread

    I was diagnosed with anal cancer (very rare) in March of this year.  I also have been diagnosed with dysplasia on my cervix and was scheduled for a LEEP.  These cancers are related.  I have been experiencing pain in my right ovary, so the doctor did a pelvic ultrasound.  Fibroids were found, so condsidering my other history, I am to discuss a hysterectomy next week with him.  My reason for posting is that the nurse explained he does the da vinci method with morcellation.  I had remembered seeing something about this spreading cancer if cancer is present from several months ago.  I have been researching this for the last several days and am horrified.  My doctor is on vacation this week, so I cannot speak with him.  I don't even really know him, as I am a new patient.  I am standing my ground and refusing this type hysterectomy.  Granted I have to give him a chance to give me other options and not make assumptions, but my question is this ... Why in the world would any doctor take a chance?  Sure, as I have read the odds are low, but again why take a chance?  The odds are low for a lot of things but since I am already one of the few that will get anal cancer this year, seems my odds went up just with that fact alone.  I am also curious as to why there is not more outrage.  This type of surgery should be banned ... period. 

    Yes

    I agree!

  • Double Whammy
    Double Whammy Member Posts: 2,832 Member
    ConnieSW said:

    Yes

    I agree!

    'Given your history" . . .

    it seems that morcellation would not be considered and that you should be referred to a gynecologic oncologist.  Maybe you are and it may be that the nurse is not aware that your doc would not do morcellation in your case.  I remember my pcp thought I would be having morcellation and I was much too stupid to even question it.  She was wrong because she's not a surgeon nor a cancer specialist.  I asked prior to my surgery how the organs would be removed because I got smarter as the days got closer.   I did have robotic surgery but my organs were removed - intact - via my vagina.   and that's what they do when cancer is suspected - the organs are removed intact, not all chopped up and put in a bag! 

    There are lots of ways to do a hysterectomy.  "Given your history" and knowing what you know, I would refuse morcellation and ask for referral to someone else if you learn that this is the procedure that the SURGEON (not a nurse) says will be done.  You may be relieved when you actually have an appointment.  I hope so.

    Suzanne

  • SMD15
    SMD15 Member Posts: 32
    ConnieSW said:

    Yes

    I agree!

    Thanks Connie

    It sure makes you wonder doesn't it. 

  • SMD15
    SMD15 Member Posts: 32

    'Given your history" . . .

    it seems that morcellation would not be considered and that you should be referred to a gynecologic oncologist.  Maybe you are and it may be that the nurse is not aware that your doc would not do morcellation in your case.  I remember my pcp thought I would be having morcellation and I was much too stupid to even question it.  She was wrong because she's not a surgeon nor a cancer specialist.  I asked prior to my surgery how the organs would be removed because I got smarter as the days got closer.   I did have robotic surgery but my organs were removed - intact - via my vagina.   and that's what they do when cancer is suspected - the organs are removed intact, not all chopped up and put in a bag! 

    There are lots of ways to do a hysterectomy.  "Given your history" and knowing what you know, I would refuse morcellation and ask for referral to someone else if you learn that this is the procedure that the SURGEON (not a nurse) says will be done.  You may be relieved when you actually have an appointment.  I hope so.

    Suzanne

    Thanks Suzanne

    I am hoping you are right.  I don't usually panic about things.  In fact, with the anal cancer I was calm as can be.  I even questioned what was wrong with me not getting all worked up about it (probably numb).  However, since my last surgery for it, I seem to be really hyper-sensitive about anything else being done.  I will definitely let him do the talking and see what he has to say, but I will be ready with a response if he talks about morcellation.  I did a little checking around and saw a female group of ob/gyn doctors that prefer a vaginal hysterectomy.  Hopefully he will take everything into account like you said. 

    Vaginal is still a good way to go with my history ... right? 

     

    Michelle