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Can we join our joint demographics?

sleem
Posts: 92
Joined: Feb 2010

There are posted commonalities for ladies like us for likely hood of risk factors...
Are there others not yet known or seemingly not important to us at this time? Perhaps we have other factors that will pop up by us comparing?
Don't know if this is an interest to anyone.

My status currently:

UPSC Stage 1 Grade 3 comfined in uterus, no invasion, one polyp, full 9 yards surgery, no node spread from any surgery taking, did washing, etc. MD Anderson Surgery age at surgery 59.. 9-2008, cuff radiation, 6 chemo (carboplatin/taxol every 21 days)...2 yr survivor/

Also sadden by lack of information provided to us women for pre-cancer signs, demographics, etc. when we attend our well woman visits.

Check out known common symptoms for patients like us on line.
Perhaps, we might discover some other common factors between us not yet put together to help future women? Maybe you can copy this and put your data in to same format?
Just a suggestion...

I learned on my own before surgery that I had many of the common risk factors uterine cancer development.
• Caucasian
• Post-menopausal
• Early menses: age 10
• Late menopause: 52
• 2 kids-normal births/vaginal
• No breast feeding
• Birth control pills –about 8 years. Before I was 30
• No hormone replacement
• Over weight as kid from about age 11-18 about 15lbs over, not as adult
• One uncle with several cancers- one type was colon cancer
• Never any post- menopausal bleeding after stopping periods

Particular to me:
• Severe migraines with periods from mid 30’s until after menses
• One month my period stopped,so did my migranes/ I never had really any hot flashes,
•Large fibroids from my 30’s; shrunk after menopause
• Regular periods
• One D&C in mid 30’s for brief heavy bleeding
Never smoked

I sailed along through menoopause and then... years later...

It was painful intercourse that showed my first concern. Then many months later, some spotting of blood after intercourse. None of these symptoms were related to me as problematic for signs of uterine disease from my doctor.

I had many of the common demographics of women who get USPC....now I learned on my own these things...never in preventative well-woman exams or general info for post-menopausal women...

lkchapman's picture
lkchapman
Posts: 106
Joined: Jan 2011

Good idea to log our histories. Here is my history.
I am Caucasian.
UPSC diagnosed at 45 years of age.
Paternal grandmother had cervical cancer. No 1st degree relatives with any cancer.

1st MP at age 11 and they were always at least 7 days long and very heavy but regular.
Birth control use; never used.
2 normal vaginal deliveries although I did develop an infection of my uterus 2 weeks after the birth of my second child that was treated with antibiotics. (I sometimes wonder if this set the stage for my cancer)
Breast fed both children.
Tubal ligation at 23.
5 years before cancer diagnosis I was told I had uterine fibroids with increasingly heavy periods w/clots.
2 years before diagnosis I began having a thick clear discharge between my periods which my gynecologist insisted was normal.
Finally after my hemoglobin was down around 8.5 and I was flooding so heavily I couldn't make it to the restroom I went back to my doctor and requested a biopsy which returned as endometrioid adenocarcinoma with papillary features. I also found out that 6 months before the biopsy my pap had come back as ASCUS and my doctor never told me. I just assumed it was normal. ALWAYS INSIST ON YOUR PAP RESULTS!

After a lap TAH/BSO I was staged at IIIC 80% high grade papillary serous carcinoma and 20% endometrioid invading more than half the myometrium metastatic to a para-aortic lymph node.

My doctor said I didn't fit any of the stereotypes for endometrial cancer so she was completely taken by surprise by the diagnosis.
I wasn't obese, no diabetes, no hypertension and still mentruating. Excellent health otherwise.
I did have a history of social tobacco, having quit 6 years before.

I do think gynecologists need to be more willing to perform endometrial biopsies, especially when there is evidence on transvaginal ultrasound of any endometrial abnormality. They shouldn't assume everything they see is a fibroid!

I really don't fit the profile for either endometrial cancer or UPSC.

sleem
Posts: 92
Joined: Feb 2010

Hi IKC... Thanks for responding

I fit so many I learned after the fact. The sad part is I asked for an Ultra sound to see if my fibroids had grown since I was having that pain. My doctor did not act upon a 17mm stripe thickening nor responded to radiologist's request to follow up clinically.... This was in Feb. and on my own in July following, I saw a few drops of blood after intercourseand had slight discharge, yellowish starting.. I called to make an apptment thinking I was being silly with this little blood. This dr. didn't relate any of my corresponding demographics nor that painful intercourse accompanying the demographics that I was at high risk. I din't get a copy of my ultrasound or a discussion. I agree that we all should ask for all our paperwork, test results, etc. I see one common thread that too many of our doctors are not being proactive on our behalf. Then, we are left picking up our health pieces that they have dropped. I wonder if the dr's are aware of our age group's needs?????
The research about estrogen in our bodies is coming in as a big idea for a factor in all of this. The more children and breast feeding has a good affect on reducing length of estrogen where early menses and late menopause making for longer estrogen creation is not good.
Mine was confirmed at 59. You were earlier than most stats.
I also had back to back events in my life that caused stress for years preceeding this stuff which I read is slow growing. I'm now reading about that factor.
Later I'll post some of the sites I found about this. I also had P53 staining which really focused in on the possibility of UPSC before my surgery.

lkchapman's picture
lkchapman
Posts: 106
Joined: Jan 2011

I wish I had found this site before I ever went to surgery, I probably would have chosen a different doctor. If my cancer recurs however, I am going to request that my care be transferred to someone else at my cancer hospital. It is a large research hospital and my doctor is really not a specialist in endometrial ca. He did the surgery just fine and gave me the appropriate chemotherapy but he has never suggested any additional tumor testing. At the time I chose him I was given the option to see someone else who was going to allow my ob-gyn to assist with my surgery. At the time I was so angry with my gyn doctor because of the things she missed that I didn't want her anywhere near me, so I declined. Now I wish I hadn't been so hasty, because that doctor (I have since discovered)is considered one of the best in the field. Oh well.
You sound like you have researched this cancer well, and we would appreciate any/all info you can add to this forum.

Take care. Laura

california_artist's picture
california_artist
Posts: 865
Joined: Jan 2009

but was associated with the less drastic form of uterine cancer.

i too had an infection requiring a D&C after the birth of a child.

Since upSc has more in common with ovarian cancer, i wonder if we should look over there. it's the papillary structure that is so chaotic that makes this cancer so different. it splits to create new cells so early in its development that it is often difficult to determine where the cancer originated from. hence, the well defined vs. not well defined. Given the choice, always choose well defined as those cells are taking thier sweet time making new cells. Ours are like babies having babies.

please ignor the spelling errors.

Sara Zipora's picture
Sara Zipora
Posts: 231
Joined: Sep 2010

Hi, checking in with my stats:
Caucasion
65 yrs
Not overweight
Mom aged 87
Dad died of Prostate Ca at age 79
No gync Ca in family
4 C sections
Nursed four kids last birth I was 27 yrs old.
No symptoms except for constipation for a month which wasn't 'kick started' by prunes or self prescribed enema.
Went to Gastro, who sent me immediately to CT. Surgery four days later.
Should've could've might've but didn't have regular Gync visits.
I work in a hospital and generally, well till now getting Chemo etc there, use services!
Dumb huh?!?
Now after four weekly taxol, every three wk carbo- four times, then two times three wks apart Doxil/Carbo
Now two months post Chemo, NED Ca 125 = 6.4 down from 94 pre surgery and 84 pre Chemo.

Staging pathology:
Adenocarcinoma, Endometriod Type, mixed, poorly differentiated with clear cell features. Secondary carcinoma Cul de SAC, Omentum, Adjacent to Right Tube and Ovary.
AJCC staging: pT3 b NO M1 ( FIGO IVB)
Architectural Grade IIIh

minniejan
Posts: 88
Joined: Dec 2010

Good Morning,

Diagnosed 12/14/2010 biopsy, ultrasound, very very slight bleeding only symptom. Got myself to gynocologist almost immediately upon my daughter's recommendation. (oncology nurse)

Surgery 12/29/10. USPS Stage 1A grade 3
Complete hysterectomy, Full surgical treatment as well,no invasion outside uterus, one polyp. Surgery and treatment at Hospital at the University of Pennsylvania in Philadelphia, a great teaching hospital. Still undergoing chemo (carboplatin and taxol) and brachytherapy. I am only getting 3 chemo treatments and 3 radiation treatments. See others on this site with stage 1 who have more. I need to ask why. At this point with side effects, I am not complaining, just questioning. As we should all ask and question. CA 125 I do not understand quite yet, need to ask on next visit. Already had to almost have second chemo postponed due to low platelet levels and low white blood cells.

Age upon diagnosis 58.
Caucasian
Post menapausal
menses starting at 12
Menopause at 53, "one more gasp" at 55, determined to be "just" a period upon first uterine biopsy at 55
three children, first at 30, last at 39, 3 c sections
no breast feeding
no smoking, moderate alcohol consumption
birth control pills about 9 years, pre-children only
no hormone replacement, no major menopausal symptoms needing treatment
never overweight, always within average parameters or below, always exercised
maternal aunt with breast cancer pre-menopause (survived)
paternal grandfather with stomach cancer and later lung cancer
paternal first cousin with breast cancer pre-menopause (did not survive)
paternal cousin with kidney cancer
high blood pressure in 40's-50's difficult to control even with medication
father died of Alzheimer's, mother still living, two strokes, dementia
had gyn exams yearly, mammograms every year, physicals yearly

Particular to me:
had fibroids with heavy bleeding, clotting, through my late 30s and through my 40's (was told I would not have another child due to fibroids, surprise!)
had benign polyps removed from uterus mid forties, never told what kind, or to be aware of anything
had benign fluid filled cysts on ovaries in 30s, one found during PT scan on ovary prior to surgery for cancer, had completely taken over ovary
heavy periods, breakthrough bleeding, irregular as in often, from 40's until menopause, 2 D and C's for this, almost had hysterectomy then, wish I did!
three cases of skin cancer in 30s, face, leg, shoulder, basal cell carcinoma, many moles removed (lived near the beach growing up!)
adenomatous polyps removed from colon 9/10, told to return in 3 years for additional testing
suffering from arthritis of hips and knees for over 10 years, resulting in taking medication and having shots in knees for inflammation
one year ago diagnosed with high cholesterol after years of it being within normal range

MinnieJan

sleem
Posts: 92
Joined: Feb 2010

I had a 17 mm stripe thickness on an ultrasound that I asked for...dr. did nothing with this info and never told me!!!

My periods did get heavy...i opted out of hyster. because I was having the headaches, not bleeding that was not managable.
Grandfather died of skin cancer & his wife, my grandmother with some type of stomach cancer
However, the headaches quit after I stopped having a period one month...never had another period nor that type migraine.

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