Anyone else diagnosed with stage 3B uterine cancer?

Tikvah
Tikvah Member Posts: 24
in Uterine/Endometrial Cancer #1

Mine was 93% through the uterine wall.  I had spread to lower nodes, and I had positive washings. 

My radical hysterectonmy was 1-1/2 years ago followed by 6-1/2 months of treatment (carbo, taxol, and internal and external radiations)

Anyone else in this boat?

«1

Comments

  • Cucu me
    Cucu me Member Posts: 213 Member
    #2
    Uterine stage 4, grade1,

    mets close to bladder and rectum, plus trace acites, but negative lymph nodes.

    Surgery and now chemo.

    Not the same boat, but still similar situation.

  • AWK
    AWK Member Posts: 364 Member
    #3
    Original opinion had me stage IIIC

    81 percent into uterine wall, softball sized mass in uterus, walnut sized mass on right ovary and three lymph nodes.  Dx April 2013.  Second opinion had me at IVB due to distance to furthest met.  Didn't change treatment plan though.  Thriving!  Anne

  • Tikvah
    Tikvah Member Posts: 24
    #4
    Cucu me said:

    Uterine stage 4, grade1,

    mets close to bladder and rectum, plus trace acites, but negative lymph nodes.

    Surgery and now chemo.

    Not the same boat, but still similar situation.

    cuculiagata

    are you on carbo and taxol?  how are you feeling?

    sounds sort of similar situation.  hope the chemo isn't too bad.  

  • Tikvah
    Tikvah Member Posts: 24
    #5
    AWK said:

    Original opinion had me stage IIIC

    81 percent into uterine wall, softball sized mass in uterus, walnut sized mass on right ovary and three lymph nodes.  Dx April 2013.  Second opinion had me at IVB due to distance to furthest met.  Didn't change treatment plan though.  Thriving!  Anne

    AWK
     
    hmm my uterous was the

    AWK

     

    hmm my uterous was the size of 3 month pregnancy.  so happy to read you are thriving!!!!!!!!

     

    = Karen

  • Cucu me
    Cucu me Member Posts: 213 Member
    #6
    Tikvah said:

    AWK
     
    hmm my uterous was the

    AWK

     

    hmm my uterous was the size of 3 month pregnancy.  so happy to read you are thriving!!!!!!!!

     

    = Karen

    tikvah, yes I'm on taxol/carbo

    Just had first chemo on Wednesday. No other side effects, but this pain in my bones under the knees.

    I wrote already about it. I have to wait few more days and I'll keep you posted.

  • Tikvah
    Tikvah Member Posts: 24
    #7
    Cucu me said:

    tikvah, yes I'm on taxol/carbo

    Just had first chemo on Wednesday. No other side effects, but this pain in my bones under the knees.

    I wrote already about it. I have to wait few more days and I'll keep you posted.

    I had a lot of knee pains.

    I had a lot of knee pains.  Take pain killer.

  • mamamoody
    mamamoody Member Posts: 28
    #8
    Endometrial adenocarcinoma

    Endometrial adenocarcinoma IIIC. Two large tumors in endometrium spread into cervix and vaginal ceiling, one lymph node.  Diagnosed early Summer of 2012.  Radical hysterectomy in Aug 2012, then basically same treatments as you had.  Found out late 2013, same cancer had spread to both lungs.  More chemo, now on estrogen-inhibitor. Still have it, but lung nodules greatly reduced in number and size.  Doing well, but the Femara (letrozole) can make life miserable sometimes.  Overall, I'm doing great considering and God is good.

  • Tikvah
    Tikvah Member Posts: 24
    #9
    mamamoody said:

    Endometrial adenocarcinoma

    Endometrial adenocarcinoma IIIC. Two large tumors in endometrium spread into cervix and vaginal ceiling, one lymph node.  Diagnosed early Summer of 2012.  Radical hysterectomy in Aug 2012, then basically same treatments as you had.  Found out late 2013, same cancer had spread to both lungs.  More chemo, now on estrogen-inhibitor. Still have it, but lung nodules greatly reduced in number and size.  Doing well, but the Femara (letrozole) can make life miserable sometimes.  Overall, I'm doing great considering and God is good.

    mamamoody

    I'm so happy for you that the lung nodules are reduced in number and size -- that treatment is working.  

    I don't know what Femara is...  Your timeframe is just a few months before mine.  I wonder why we are all not on estrogen-iibitors -- is that the Femara?  I hope the nodules completely vanish and you go into full and permanent remission.  Keep me posted.

  • mamamoody
    mamamoody Member Posts: 28
    #10
    Tikvah said:

    mamamoody

    I'm so happy for you that the lung nodules are reduced in number and size -- that treatment is working.  

    I don't know what Femara is...  Your timeframe is just a few months before mine.  I wonder why we are all not on estrogen-iibitors -- is that the Femara?  I hope the nodules completely vanish and you go into full and permanent remission.  Keep me posted.

    hi Tikvah

    I had never heard of the estrogen-inhibitors either (there's three different ones) since my onc suggested it since I couldn't have anymore chemo for awhile.  I now know that it is usually used in breast cancer treatments for estrogen based cancers, which mine is.  It really makes me hurt, but they are talking long term use - 5 to 10 years after the cancer is gone (which it isn't quite yet).  Each CT SCAN has shown reduction in size and numbers since being on it EXCEPT this last scan in March.  Everything was stable, still just two little nodules (one in each lung),  and no new nodules anywhere.  Next scan in Sept.  Where are you at in treatment?

  • mamamoody
    mamamoody Member Posts: 28
    #11
    mamamoody said:

    hi Tikvah

    I had never heard of the estrogen-inhibitors either (there's three different ones) since my onc suggested it since I couldn't have anymore chemo for awhile.  I now know that it is usually used in breast cancer treatments for estrogen based cancers, which mine is.  It really makes me hurt, but they are talking long term use - 5 to 10 years after the cancer is gone (which it isn't quite yet).  Each CT SCAN has shown reduction in size and numbers since being on it EXCEPT this last scan in March.  Everything was stable, still just two little nodules (one in each lung),  and no new nodules anywhere.  Next scan in Sept.  Where are you at in treatment?

    where are you?

    Anybody else here from Texas?  Actually, can we share what state we are in?  Totally at your discretion.  Just curiousLaughing

  • AWK
    AWK Member Posts: 364 Member
    #12
    mamamoody said:

    where are you?

    Anybody else here from Texas?  Actually, can we share what state we are in?  Totally at your discretion.  Just curiousLaughing

    I am in the Los Angeles area

    Being treated at the Leavey Cancer Center in Northridge which is affiliated with UCLA.  I had consults and opinions at The City of Hope, USC Norris and Ceders Sinai.  Due to my UPSC, unusual spreading and genome make up my tema now consists of doctors from those hospitals, researchers plus Dana Farber, Sloan Kettering and MD Anderson.  

  • debrajo
    debrajo Member Posts: 1,095 Member
    #13
    mamamoody said:

    where are you?

    Anybody else here from Texas?  Actually, can we share what state we are in?  Totally at your discretion.  Just curiousLaughing

    State

    I m in Southeast Texas,largest city near me is Beaumont.  I get treatment/care at M.D. Anderson

  • Lou Ann M
    Lou Ann M Member Posts: 996 Member
    #14
    mamamoody said:

    where are you?

    Anybody else here from Texas?  Actually, can we share what state we are in?  Totally at your discretion.  Just curiousLaughing

    State

    Originally from Missouri, the St. Louis area, we moved to Montana 36 years ago.  I started treatment in Butte, Mt because it is closer. When I had a recurrence 7 months after treamnet ended. I changed to the Bozeman Cancer Center in Bozeman, MT.   I recieve excellent care there.  Lou An

  • mamamoody
    mamamoody Member Posts: 28
    #15
    debrajo said:

    State

    I m in Southeast Texas,largest city near me is Beaumont.  I get treatment/care at M.D. Anderson

    What state?

    Thanks, ladies.  Debrajo, I'm down here in Corpus Christi.  The military offered to send me to MDA but I chose instead to have my surgery in San Antonio and treatments here at home.  I don't really like to travel.  The 2.5 hr ride to SA for surgery and follow-ups was bad enough.  I've had excellent care so far, but I know MDA is supposedly one of the best places.

  • Ed-Husband
    Ed-Husband Member Posts: 4
    #16
    mamamoody said:

    Endometrial adenocarcinoma

    Endometrial adenocarcinoma IIIC. Two large tumors in endometrium spread into cervix and vaginal ceiling, one lymph node.  Diagnosed early Summer of 2012.  Radical hysterectomy in Aug 2012, then basically same treatments as you had.  Found out late 2013, same cancer had spread to both lungs.  More chemo, now on estrogen-inhibitor. Still have it, but lung nodules greatly reduced in number and size.  Doing well, but the Femara (letrozole) can make life miserable sometimes.  Overall, I'm doing great considering and God is good.

    CA125

    Hi again.  we just got through first Doxil treatment on recurrant Adenocarcinoma.  Her CA125 had been down around 9 for about 6 months.  Then it jumped to 52 and Doc did a CT scan.  It was read as negative.  So repeated the CA125 two weeks later and it was 120.  Rescanned still negative.  Doc made radiology go back and re-read scan.  Found two measurabloe nodes.  Largest 1.2cm.  All on the Peritineum.  Did a biopsy to confirm same cancer.  Took another CA125 10 days later and started Chemo.  Benchmark CA125 is 262.  Checking next week to see if that has changed.  I don't know much about CA125 to know if this is alarming other than the obvious?  Doc says not to get hung up on the numbers.  Will rescan Mid August.

     

    Oh and Lafayette, Louisiana

  • DrienneB
    DrienneB Member Posts: 182
    #17
    Uterine 3B

    Mine was diagnosed in April 2013. The tumor was morcellated when examined, but was believed to have penetrated more than 90 through myometrium. I had a positive pelvic washing. Had 84 cancer-free nodes removed. After the rad. hysterectomy, I had the 6 rounds of cadrbo/taxol, then decided against radiation.

    I had or have a malignant mixed mullerian tumor (MMMT) with the epithelial component of endometrioid adenocarcinoma. It has been 2 years since my diagnosis, and I have not yet had a visible recurrance. I do not like the CT scans, and with my doctor's approval, have just decided to wait until I feel pain or have other evidences (evevated CA125) before doing another scan. Or, I might just opt for once yearly check-ups.

    best to y'all,

    j

  • AWK
    AWK Member Posts: 364 Member
    #18
    Ed-Husband said:

    CA125

    Hi again.  we just got through first Doxil treatment on recurrant Adenocarcinoma.  Her CA125 had been down around 9 for about 6 months.  Then it jumped to 52 and Doc did a CT scan.  It was read as negative.  So repeated the CA125 two weeks later and it was 120.  Rescanned still negative.  Doc made radiology go back and re-read scan.  Found two measurabloe nodes.  Largest 1.2cm.  All on the Peritineum.  Did a biopsy to confirm same cancer.  Took another CA125 10 days later and started Chemo.  Benchmark CA125 is 262.  Checking next week to see if that has changed.  I don't know much about CA125 to know if this is alarming other than the obvious?  Doc says not to get hung up on the numbers.  Will rescan Mid August.

     

    Oh and Lafayette, Louisiana

    My doctors say this is just one thing in the tool box, not to wo

    My numbers bounce around as described by my doctors.  They test for it as well as Ca 19-9.  They follow ovarian protocols closely including the ca 125 which he thinks isn't a great marker for me as a stand alone.  Ct scans really seem to drive everything.

  • mamamoody
    mamamoody Member Posts: 28
    #19
    Ed-Husband said:

    CA125

    Hi again.  we just got through first Doxil treatment on recurrant Adenocarcinoma.  Her CA125 had been down around 9 for about 6 months.  Then it jumped to 52 and Doc did a CT scan.  It was read as negative.  So repeated the CA125 two weeks later and it was 120.  Rescanned still negative.  Doc made radiology go back and re-read scan.  Found two measurabloe nodes.  Largest 1.2cm.  All on the Peritineum.  Did a biopsy to confirm same cancer.  Took another CA125 10 days later and started Chemo.  Benchmark CA125 is 262.  Checking next week to see if that has changed.  I don't know much about CA125 to know if this is alarming other than the obvious?  Doc says not to get hung up on the numbers.  Will rescan Mid August.

     

    Oh and Lafayette, Louisiana

    CA 125

    Hi Hubby Ed from Louisiana!

    I agree with Doc.  Don't get too caught up with those numbers.  It's just one tool that they use.  My CA125s were never even elevated despite the obvious cancer.   I hope your wife's treatments go well.  My best to you and her.

  • Tikvah
    Tikvah Member Posts: 24
    #20
    To J

    I need another scan in a couple of weeks, but my oncologist said they are not reliable.  Best indicator of something wrong is through symptoms.  

     

  • Tikvah
    Tikvah Member Posts: 24
    #21
    mamamoody said:

    where are you?

    Anybody else here from Texas?  Actually, can we share what state we are in?  Totally at your discretion.  Just curiousLaughing

    Hi Mamamoody

    I'm from New Jersey, just outside New York.  I'd wanted to go to Sloan Kettering, but my insurance doesn't cover it, and after having had treatment, I don't know how I would have been able to travel back and forth every day over the bridge -- too exhausting.

     

     

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