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Anyone else diagnosed with stage 3B uterine cancer?

Tikvah
Posts: 24
Joined: Apr 2014

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?

Cucu me
Posts: 214
Joined: Apr 2015

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.

Tikvah
Posts: 24
Joined: Apr 2014

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

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

AWK
Posts: 364
Joined: Mar 2013

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
Posts: 24
Joined: Apr 2014

AWK

 

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

 

= Karen

Cucu me
Posts: 214
Joined: Apr 2015

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
Posts: 24
Joined: Apr 2014

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

mamamoody's picture
mamamoody
Posts: 28
Joined: Jun 2015

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
Posts: 24
Joined: Apr 2014

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's picture
mamamoody
Posts: 28
Joined: Jun 2015

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's picture
mamamoody
Posts: 28
Joined: Jun 2015

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

AWK
Posts: 364
Joined: Mar 2013

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's picture
debrajo
Posts: 1095
Joined: Sep 2011

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

mamamoody's picture
mamamoody
Posts: 28
Joined: Jun 2015

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.

Lou Ann M's picture
Lou Ann M
Posts: 987
Joined: Feb 2015

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

Tikvah
Posts: 24
Joined: Apr 2014

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.

 

 

Ed-Husband
Posts: 4
Joined: Jun 2015

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

AWK
Posts: 364
Joined: Mar 2013

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's picture
mamamoody
Posts: 28
Joined: Jun 2015

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.

DrienneB's picture
DrienneB
Posts: 183
Joined: Aug 2013

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

Tikvah
Posts: 24
Joined: Apr 2014

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.  

 

Abbycat2's picture
Abbycat2
Posts: 573
Joined: Feb 2014

My gyne oncologist relies basically on three assessment tools: if I am having symptoms; the ca 125 and an internal exam. He said that a Cat Scan will pick up on   evidence of a tumor about 2 to 3 weeks before the onset of symptoms. Two to three weeks is negligible in terms of cancer spread. I was diagnosed with cancer (later to be determined to be UPSC stage 3A) in Oct, 2013 and had a hysterectomy the same month. The typical chemo treatment followed. No radiation. Had a positive wash and no cancer in lymph nodes. I am one year and 8 months out from surgery and so far I am NED.

Cathy

pinky104
Posts: 392
Joined: Feb 2013

I haven't been on here recently due to computer problems.  I celebrated my five years of survival last month from stage IVb UPSC.  My cancer was in my uterus, both ovaries, the omentum, and the small intestine, but no lymph nodes.  I did surgery and chemo (carboplatin and taxol) only.  I wasn't offered any other form of treatment, and I've been NED since finishing chemo.  I live in a small town in upstate NY and my gyn/onc in Albany has been excellent.  His partner was the doctor recommended by my gynecologist, but the partner was booked up, so I settled for this guy, and I'm glad I did.  I'm going to continue seeing him yearly past the five year mark.  I had a mass found in me last year in my paracolic gutter after having right lower quadrant pain, but after repeat scans and CA-125 tests, my gyn/onc has decided it's not cancer since it's not growing.  My last CA-125 was 6.9.   I won't have any more scans unless something new happens, like some bleeding.  I've had 4 CT scans and one PET scan in the last year, and I'm glad they're all I'm going to need for awhile.  I need a break from doctors!!!

Cucu me
Posts: 214
Joined: Apr 2015

is out of trouble.

So great to take a break from treatments and fears.

Keep it that way.Stay healthy!!!!!!!!!!!!!!!!!

We,the new ones are feeling hopeful for ourselves too.

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