vague symptoms.. have we discussed how our OVCA was discovered?

Mwee

Hi loves... They talk about awareness with OVCA and the vague symptoms that this disease can present with. I thought I knew my body well and would never have known that anything was amiss if I hadn't developed a hernia. How do we help other women obtain early detection?
(((HUGS))) Maria

kellyh33

Warning Signs
Hi Maria,
My Mom has ovarian cancer and all her warning signs were dismissed by the family and by her doctor. This is despite the fact the Mom was taken to the doctor 4 times and she told him she had cancer. He told her she didn't.
She was vomitting everyday for a few weeks ( he told it was nerves)
weight loss at that time 135 down to 112 ( again nerves)
lack of appetite again the nerves
peeing her pants ( must need a bladder lift)
depression ( history of it)
No energy - again nerves/depression
bloated stomach- side effect of cymbalta
Mom started talking to her doctor about this in February and she wasn't diagnosed until June 18th. He did all kinds of blood work and finally sent her to a intenist June 4th. She ordered at CT scan and a CA125 and a BRCA. Her CA 125 was 14,301, BRCA was 0.
It guts me when i think of all the tiem we lost fighting this dreaded disease, if only he had ordered a CA 125 immediately. It is a $35.00 test and we would gladly have paid for it

leesag

kellyh33 said:

Warning Signs
Hi Maria,
My Mom has ovarian cancer and all her warning signs were dismissed by the family and by her doctor. This is despite the fact the Mom was taken to the doctor 4 times and she told him she had cancer. He told her she didn't.
She was vomitting everyday for a few weeks ( he told it was nerves)
weight loss at that time 135 down to 112 ( again nerves)
lack of appetite again the nerves
peeing her pants ( must need a bladder lift)
depression ( history of it)
No energy - again nerves/depression
bloated stomach- side effect of cymbalta
Mom started talking to her doctor about this in February and she wasn't diagnosed until June 18th. He did all kinds of blood work and finally sent her to a intenist June 4th. She ordered at CT scan and a CA125 and a BRCA. Her CA 125 was 14,301, BRCA was 0.
It guts me when i think of all the tiem we lost fighting this dreaded disease, if only he had ordered a CA 125 immediately. It is a $35.00 test and we would gladly have paid for it

Warning signs
Backache (I'm a teacher and I carry tons of work home)
Fatigue (again, I'm a teacher and I work a lot)
Incontinence (pregnancy and middle age)
At the end of December, I began having pain about 1-3 hours after I ate...this seemed to indicate Gall Bladder, so I made an appointment with my primary care in January.
She agreed that it was Gall Bladder and sent me to get an ultrasound and I scheduled an appointment with a surgeon to have it removed.
Extreme bloating...pants that fit on Friday had a 2 inch gap on Monday.
The ultrasound showed "fluid" so I was sent for a CT.
The CT showed "massive ascites" and carcinamatosis. I made an appt. with my GYN.
GYN said all seemed normal, and sent me for transvaginal ultrasound and blood work. CA125- 9824
Transvaginal ultrasound showed abnormalities, was referred to GynOnc.
GynOnc sent me for a Pet Scan. Hello Stage IIIC
Surgery scheduled for February 10th at St. Agnes....hello blizzard...redirected for same day at Mercy Medical Center.
Optimal Debulking ...Chemo began in March.
Chemo ended June 24th.
NED declared in July 22nd.




I think the answer to early diagnosis is the transvaginal ultrasound.

Hissy_Fitz

leesag said:

Warning signs
Backache (I'm a teacher and I carry tons of work home)
Fatigue (again, I'm a teacher and I work a lot)
Incontinence (pregnancy and middle age)
At the end of December, I began having pain about 1-3 hours after I ate...this seemed to indicate Gall Bladder, so I made an appointment with my primary care in January.
She agreed that it was Gall Bladder and sent me to get an ultrasound and I scheduled an appointment with a surgeon to have it removed.
Extreme bloating...pants that fit on Friday had a 2 inch gap on Monday.
The ultrasound showed "fluid" so I was sent for a CT.
The CT showed "massive ascites" and carcinamatosis. I made an appt. with my GYN.
GYN said all seemed normal, and sent me for transvaginal ultrasound and blood work. CA125- 9824
Transvaginal ultrasound showed abnormalities, was referred to GynOnc.
GynOnc sent me for a Pet Scan. Hello Stage IIIC
Surgery scheduled for February 10th at St. Agnes....hello blizzard...redirected for same day at Mercy Medical Center.
Optimal Debulking ...Chemo began in March.
Chemo ended June 24th.
NED declared in July 22nd.




I think the answer to early diagnosis is the transvaginal ultrasound.

I had a short period of
I had a short period of really bad constipation in the Summer of 2009, but it was easily resolved, so I did not consider having the doctor check it out. A few weeks later I went in to have a persistent pain in midriff evaluated and like Leesa and her PCP, my doctor and I both agreed that it was probably my gall bladder. I had also complained of some urinary urgency so he sent me for an atomic gall bladder test and a transvaginal ultrasound.

The cause of the upper abdominal pain was ascites, of course. My CA125 was 4,000. I was diagnosed 9/17/09 and scheduled for surgery on 9/29, after consulting a Gyn/Oncologist. A bowel obstruction sent me to the hospital three days early. If I had ignored the other symptoms, this one would have gotten my attention, for sure.

My OVCA was staged at IIIc. I finished my Carbo/Taxol initial treatment in Feb of 2010 and was pronounced NED on the basis of CT scan and very low CA125 readings. I am now doing 12 months of Taxol maintenance.

I have no histroy of female cancer and none of the risk factors associated with OVCA. I am also BRCA negative.

Carlene

kayandok

Not for awhile.....
I had some bloating, and twingy pains, but had endometriosis for years and was used to that.

May 2007 I went for a regualr yearly PAP
Vaginal ultra sound (routine here) showed both ovaries swollen at 4cm
GYN ordered an MRI and CA125
MRI was iffy, but CA512 was at 480

Sent to uni hosptial the next day
surgery was scheduled for 2 weeks later.
DX was received after exploratory surgery (omentum removed)
I woke up to a huge shock, "I'm sorry but you have ovarian cancer IIIC"

Put on neoadjunctive chemo
Had 2 rounds
CA went up more

I flew to the US and had a COMPLETE (no visibale cancer left) cytoreductive debulk surgery
Women's Cancer Center in CA took me in immediately (They saved my life!)
Had 8 rounds of carbo/taxol (CA zipped to 4)
June of 2008, had second look surgery
125 biopsies were all clear
Declared NED

kathleen

I agree, yearly paps should include vagianl US and CA125 tests, although I was faithful to have both and still caught it too late.

nancy591

April through September.
I had my annual GYN exam in January which included an internal sonogram because I had been having cysts. My sonogram came back fine.

In April of that same year I had severe constipation and pain. I went to a gastroentrologist. He said it was probably irritable bowel. My Mom has irritable bowel so for me it made sense. Since I had a clear colonoscopy a year earlier he ordered an 'upper Gi series'. In this diagnostic test you drink a barium and xrays are taken at intervals as the barium goes through the colon. The test showed nothing. From April to September I endured episodes of severe constipation alternating with diarrhea and abdominal pain.

That same summer I also noticed my lower abdomen was 'bigger'. I just thought I was gaining weight. I had to unzip my jeans to feel comfortable. I remember thinking 'what is wrong with my stomach'. I also had increased belching and gas.

In September of that same year is when things got truly severe. Over a period of 6 days I went to the gastroentrologist, urgent care twice and finally to the ER. It started with SEVERE abdominal pain. I went to the gastro doctor who said it was probably a flare up of irritable bowel and gave me a script for miralax. I suffered all day at home in pain not eating. I went back the next day thinking it HAD to be my gallbladder. The gastro doc wouldn't see me so I went to their urgent care. They called gastro doc and he told them to give me a script for Zantac. They said it couldnt' be gallbladder because my WBCs were fine. I suffered at home for 2 days in pain not eating. The following day, day 5, I called and asked to speak with the gastro doc. I started crying telling them I've been in pain and can't eat for 5days now. The doc says maybe I'm just depressed. I started thinking maybe I was crazy. I suffered all that day at home in pain not eating. The following day my upper abdomen started swelling. I finally went to my local ER. I remember the ER nurse seemed very unimpressed with my sypmtoms saying oh, maybe its just gas. I remember putting my head in my hands thinking why aren't these people listening to me! I then started vomiting in the ER. They did an abdominal xray then a CT scan. I was admitted with a bowel obstruction and ovca. I was stage IV.

leesag

kayandok said:

Not for awhile.....
I had some bloating, and twingy pains, but had endometriosis for years and was used to that.

May 2007 I went for a regualr yearly PAP
Vaginal ultra sound (routine here) showed both ovaries swollen at 4cm
GYN ordered an MRI and CA125
MRI was iffy, but CA512 was at 480

Sent to uni hosptial the next day
surgery was scheduled for 2 weeks later.
DX was received after exploratory surgery (omentum removed)
I woke up to a huge shock, "I'm sorry but you have ovarian cancer IIIC"

Put on neoadjunctive chemo
Had 2 rounds
CA went up more

I flew to the US and had a COMPLETE (no visibale cancer left) cytoreductive debulk surgery
Women's Cancer Center in CA took me in immediately (They saved my life!)
Had 8 rounds of carbo/taxol (CA zipped to 4)
June of 2008, had second look surgery
125 biopsies were all clear
Declared NED

kathleen

I agree, yearly paps should include vagianl US and CA125 tests, although I was faithful to have both and still caught it too late.

Kathleen,
But if the annual
Kathleen,

But if the annual tests weren't required there, would you have complained loudly enough about the symptoms you associated with the endometriosis?

Ah well, hindsight is 20/20 isn't it?

Leesa

Lisa13Q

Great Topic - I am going on my soap box...
Thank you so much for starting this topic. I am watching "pink" all over the NFL today and gettting high blood pressure... Not that I don't want to cure breast cancer, but....come on we have made little progress on this OVCA.

They call it a gynecological cancer, yet it mostly shows up as bowel and gastro-intestinal issues. The Gastro docs miss it because they NEVER look on the outside of the bowel, and the gyno-oncs miss it because they don't consider digestive issues as related to gyno issues. We also NEVER educate girls that an annual exam does NOTHING to find this.

From what I can tell, a vaginal ultrasound is what detects this horror...WHY AREN'T THEY A REGULAR PART OF ANNUAL SCREENING? They cost less than a mammogram..Am I wrong about this? If I am right, why the heck aren't we giving vaginal utrasounds as well as PAPs? Someone please let me know because this has been a bug up my butt for awhile....

leesag

Lisa13Q said:

Great Topic - I am going on my soap box...
Thank you so much for starting this topic. I am watching "pink" all over the NFL today and gettting high blood pressure... Not that I don't want to cure breast cancer, but....come on we have made little progress on this OVCA.

They call it a gynecological cancer, yet it mostly shows up as bowel and gastro-intestinal issues. The Gastro docs miss it because they NEVER look on the outside of the bowel, and the gyno-oncs miss it because they don't consider digestive issues as related to gyno issues. We also NEVER educate girls that an annual exam does NOTHING to find this.

From what I can tell, a vaginal ultrasound is what detects this horror...WHY AREN'T THEY A REGULAR PART OF ANNUAL SCREENING? They cost less than a mammogram..Am I wrong about this? If I am right, why the heck aren't we giving vaginal utrasounds as well as PAPs? Someone please let me know because this has been a bug up my butt for awhile....

Hi Lisa,
My theory is this: It's not cost effective for the insurance companies to cover the Vaginal Ultrasound. Mammograms ARE cost effective because they provide early detection for MANY women. The cost of the ultrasound is negligible in comparison to the amount they would spend on treatment for all of the women diagnosed with Breast CA.

Vaginal ultrasounds, on the other hand, are not cost effective. For instance on a website I recently visited the estimated number of OVCA cases in Maryland in 2009 was estimated at 420. So if every women in Maryland had an annual Vaginal U.S., the cost of all of those negative ultrasounds would be much higher than treating 420 women.

That's my jaundiced view, anyway. It may not be the truth, but it's hard not to think that way.

Hissy_Fitz

leesag said:

Hi Lisa,
My theory is this: It's not cost effective for the insurance companies to cover the Vaginal Ultrasound. Mammograms ARE cost effective because they provide early detection for MANY women. The cost of the ultrasound is negligible in comparison to the amount they would spend on treatment for all of the women diagnosed with Breast CA.

Vaginal ultrasounds, on the other hand, are not cost effective. For instance on a website I recently visited the estimated number of OVCA cases in Maryland in 2009 was estimated at 420. So if every women in Maryland had an annual Vaginal U.S., the cost of all of those negative ultrasounds would be much higher than treating 420 women.

That's my jaundiced view, anyway. It may not be the truth, but it's hard not to think that way.

And the TVU is only
And the TVU is only moderately effective, as far as early detection goes. Ovarian cysts, which are very, very common and most often non-malignant, and Ovarian Cancer are virtually impossible to tell apart on the sonogram screen.

There is no sure way to diagnose OC, except by pathology.

vj1

early detection
I had absolutely no symptoms of any sort. Had an attack that turned out to be a kidney stone and the scan for that showed the mass on my ovary. Had the debulking and staged at 111c. Don't wish anyone a kidney stone but if I had not had one---well let's not go there.

kayandok

leesag said:

Kathleen,
But if the annual
Kathleen,

But if the annual tests weren't required there, would you have complained loudly enough about the symptoms you associated with the endometriosis?

Ah well, hindsight is 20/20 isn't it?

Leesa

You are right,
Leesa, I ignored what little symptoms I did have, and should have gone in before the yearly. The annual PAP is not requred here, but if you choose to go in and pay for it, they automatically do a TVU, and CA125 if things look questionable, which I think is good. AND, advanced ovarian cancer is rare here, so maybe there is something there.

Barbarba Goff, a famous gyn/onc has done extensive research on preventing OvCa and listening (you can see her speeches on YouTube) to her explain away why a CA125 is NOT necessary on the annual exam, kind of made me ill. It really boils down to money, I think. C'mon anyone would pay $35 if they knew that it MIGHT save their life!

kathleen

newhopechurchli

vj1 said:

early detection
I had absolutely no symptoms of any sort. Had an attack that turned out to be a kidney stone and the scan for that showed the mass on my ovary. Had the debulking and staged at 111c. Don't wish anyone a kidney stone but if I had not had one---well let's not go there.

My symptoms
Very heavy bleeding and clotting. Periods that lasted over 2 weeks. A swollen abdomen. Exhaustion. I just didn't "look" right. I kept looking at myself and saying.... why won't my makeup stay on? I know that sounds ridiculous but after my surgery I immediately looked like my old self. I was told by my gynecologist that I was going through menopause. I wish!!!!

Barbara53

tied to bathroom
Mom's only symptom was what seemed to be irritable bowel syndrome that steadily got worse and worse. She says the warning sign should be using more than a roll of toilet paper in a day! If a hot lymph node in her groin had not become inflamed, no telling when she would have been diagnosed.

Tina Brown

Barbara53 said:

tied to bathroom
Mom's only symptom was what seemed to be irritable bowel syndrome that steadily got worse and worse. She says the warning sign should be using more than a roll of toilet paper in a day! If a hot lymph node in her groin had not become inflamed, no telling when she would have been diagnosed.

PPC symptoms
I had had a gynae opperation (Rectocele) 6 weeks before I noticed that my tummy was bloating. I thought I was putting on weight cos of my inactivity because I had to rest following the surgery. Then I couldn't breathe very well. I went to my doctors who gave me anti-biotics because he could hear some conjestion in my chest (which was actually fluid but no one knew this at the time) The anti-biotics didn't work and my breathing became worse to the point of me not being able to lie down to sleep. So I had a chest x-ray which showed thre fluid (plueral effusion) and was given an appointment for 2 weeks at the hospital. Well I tell you I was too bad to wait so I was rushed in and had a chest drain from my right lung and drained 3 litres off. They tested the fluid and found malignant cells in there. I was told I had cancer but the doctors didn't know where??????? So I had a CT scan and had to wait another week to find out it was PPC.

It was only this time last year yet it seems a life time ago

naomilansing

so embarrassing
last year, not long after my 22nd birthday, my stomach started looking distended, and people were asking me if i was pregnant. (NOPE, JUST FAT! i'd say) weird thing was that i was losing weight, though, so i saw the doctor, who felt my tummy and said it might be a bowel infection or something like that. so she sent me for an ultrasound. what a freaking shock!
23 pound tumor on the right ovary, 4 pound tumor on the left.
apparently, the biggie (my surgeon named it edgar - no idea why) had been growing for 10 years!?!
i am quite young, only 23 now, and think that early detection is definitely super important. i am very lucky that it was detected when it was but i mean seriously.... 10 years and no one knew? that is so not okay for anyone of any age. i think it's scary how clueless doctors can be about what's going on inside of us. and i think it's even scarier that i was so out of touch with my own body. i'm still a little bit ashamed that i didn't know. i will say this, though: my experience has made me listen to every little whisper. i will never again ignore an ache or a pain. sometimes i worry that i'm a little bit too careful now. is that possible? i'm sure i'll adjust and find a middle soon. anyone else have that problem?

msfanciful

Having been a stylist/salon
Having been a stylist/salon owner for 20+ years, out of the blue I developed a nagging back pain (in the small of my back) that just didn't go away. of course I attributed it to my literally backbreaking profession. I did everything from having back massages (perhaps muscle tension?), to following-up with a doctor to make sure I didn't have back injury from a previous accident. Nothing relieved the pain. So I just dealt with it.

Second, the constant distended tummy that I assumed was a result of my over 50 age.

Third, the irregular cycles that I and my girlfriends attributed to oncoming menopause. NOT!

It was only one night that I was lying on my back and felt my pelvic area and I felt lumps?

I then found out I had fibroids and was scheduled for colcoscopy and before I could even have the colcocopy I was rushed into emergency for pneumonia, upon which I was then introduced to stage iv ovca. :-(

My point is... the symptoms of this disease mimic so many "female" concerns and are thus very vague and misleading and as a result deadly to assume they are only female concerns.

The word has to get out that if any of these symptoms linger for more than two weeks, you probably have a serious cause for concern.

It is definitely the cancer that whispers.