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-   -   Stage 1 OC - How were you diagnosed? (http://www.healthboards.com/boards/cancer-cervical-ovarian/308087-stage-1-oc-how-were-you-diagnosed.html)

CountryGirl 07-26-2005 09:38 AM

Stage 1 OC - How were you diagnosed?
 
Does anyone diagnosed with stage 1 OC want to share how they were diagnosed and if they had any symptoms? Will stage 1 always show on ultrasound and CT?

mnemosyne 08-02-2005 02:01 PM

Re: Stage 1 OC - How were you diagnosed?
 
I think its very rare for anyone to be diagnosed with stage 1 ovarian cancer, chiquita, and most of the screening tests are provisional.

My mother was diagnosed with "something" based on an abnormal ultrasound in September 2003. Her ob-gyn got a CT of the pelvis and did a CA-125 test, which was positive so he referred her to a gynecological oncologist, who - based on the ultrasound and CT scan - thought that the CA-125 was a false positive and thought she could wait a few months for her hysterectomy because he didn't think it was urgent. He did, however, schedule her for a uterine biopsy, which was + for ovarian cancer. Her tumor was definitively diagnosed, but she was not staged appropriately (III-C - her cancer spread to her uterus and there were tumor implants throughout the peritoneal cavity) until she had her radical hysterectomy two weeks later. Mom's surgeon was surprised at the extent of her disease. The tumor implants were not revealed by the ultrasound or CT scan.

My mother had no symptoms whatsoever. She had regular ob/gyn check-ups (had, in fact, last seen her ob-gyn in August 2003), which were mostly normal. Her ob-gyn scheduled her for the ultrasound and a follow-up in September because they were planning an elective hysterectomy (she had a prolapsed uterus).

My advice is not to obsess over the symptoms. Most women just don't have symptoms. If you are having symptoms, your ob-gyn or GI doc or someone will probably do an ultrasound. If you have a clean ultrasound, you are a-ok and should stop worrying about it.

If you have reason other than your symptoms to worry (aka - you have a strong family history of breast/ovarian/prostate cancer), you can research genetic testing. If you are + for either of the breast/ovarian/prostate cancer genes (the three are all related), you will have better reason for cautious concern and might be able to justify yearly (or biennial or whatever) screening ultrasounds to your insurance company. I have a very strong family history of breast and ovarian cancer (mom w/ovarian cancer, aunt just died from recurrent metastatic breast cancer first diagnosed 10 years ago, their only female cousin has breast cancer in both breasts, grandfather died of prostate cancer), and I am planning to have genetic testing in the next couple of years to help manage my risks. Beyond that, it's not worth obsessing over.

Good luck!

CountryGirl 08-02-2005 05:22 PM

Re: Stage 1 OC - How were you diagnosed?
 
mnemosyne,

The reason I threw out that question was to see if I could figure out what the doctor's might be missing. I'm not obsessing over symptoms for symptoms sake, I want my life back. I haven't been able to eat a normal meal for over 9 months. I can only eat a few bites at a time, have nausea and have lost 30 lbs. I'm 5'9" and 115 lbs. a week ago, but gained 5 lbs. overnight and am now bloated. I've had every gastro test imaginable (I think) everything comes back normal. I've had periods that were 2 1/2 weeks apart and now 8 weeks with no period. I have pelvic pain intermittent, sometimes stabbing and tremendous fatigue. I also have low blood pressure. The only thing they have found so far are cysts on my ovaries, but want to watch and wait. Because of the cysts on the ovaries I was just wondering if the doctors could be missing something.

My mother did die of breast cancer at 55, was diagnosed at 46 and my brother had testicular cancer.

mnemosyne 08-02-2005 09:51 PM

Re: Stage 1 OC - How were you diagnosed?
 
As long as you've had a clean pelvic ultrasound - and, except for the cysts, it sounds like you have - you needn't worry about ovarian ca as the cause of your symptoms.

Some of your sx (irregular/absent menses, digestive problems, inexplicable weight gain + polycystic ovaries) sound like an endocrine disorder called PCOS, although it mostly affects women who are heavier than you. If your GI doc says nothing's wrong and your ob-gyn says the same thing - consider asking about PCOS or for a referral to an endocrinologist.

ail33 08-05-2005 06:47 PM

Re: Stage 1 OC - How were you diagnosed?
 
You may also have endometriosis which typically will only be diagnosed with laproscopic surgery.

NY 1009 09-22-2005 11:44 AM

Re: Stage 1 OC - How were you diagnosed?
 
No Country girl,
OC stage 1 will not always show up on an ultra sound or CT scan or MRI.
there is a woman who wrote about her personal ovarian cancer story somewhere else, and let me tell you, she URGES other woman to keep seeing other doctors if they just keep watching and waiting and if you're still having vague symtoms.
after all,
vague symtoms are the only symtoms of ovarian cancer, usually called the silent killer because doctors and specialtists used to think there were no symtoms until later in the disease. this is NOT TRUE. they've done extensive research on patients who were diagnosed with OC and they found out that there are early symtoms, months before a woman is diagnosed, when it could've been caught in the early stages.
they are symtoms of irritable bowel syndrome, bloated abdomen, as if a woman were 8 months pregnant. pants get very tight and pants size goes up even though the woman could be weighting less in pounds, gasiness, constipation, or the opposite, urgency or freqeunt urination, feelings of nauseua or upset stomach after eating certain meals, feeling full quickly when only eatting very small meals, etc.
alot of these symtoms sound gastro related and these patients get referred to a gastroenterologist only to find out the tests come out neg. for gastro and then months later to be told they have ovarian cancer stage III or IIII.
it's horrible. it's frightening. I wish woman didn't feel silly or inhibited by telling their doctors to do further studies.
demand it. see another dr if you have to. it's o.k. it's your body.
don 't ever feel like your'e over reacting. because if this woman shawn, never pushed further, they would never have found her cancer until later. they did an exploratory laparotomy on her and found it hidden in side all over her peritonium? the cat scan and ultra sound did not pick this up.
she sounded like she was a hypochondriac to all her doctors yet never gave up and pushed till she found a dr who would listen that she wasn't quite feeling right.
no one really listened to her.
accept herself.
Good Luck.

Linda

CountryGirl 09-24-2005 05:29 PM

Re: Stage 1 OC - How were you diagnosed?
 
Thanks for your reply. Yes, I kept on the doctors--bled for 26 days in August, very heavy at times. A lot of pain, and also intermittant (every day) sharp stinging pain in ovary area for last 6 weeks. Still extremely fatigued and nauseated. In July Ct scan showed 2 cm irregular cyst and U/S showed many small cysts also on both ovaries. My latest CA125 was 36.3, last Nov. - 13, Apr. - 18. My gyn says lets stop the pain and bleeding and see if it helps nausea. Am scheduled for hysterectomy on Sept. 29. I am ready to know for sure and at least get rid of some of my problems.

Alyss 09-24-2005 09:31 PM

Re: Stage 1 OC - How were you diagnosed?
 
There's always the option of a second opinion. Go in with your records (test & radiological scans or reports) if you go.

CountryGirl 09-26-2005 06:12 AM

Re: Stage 1 OC - How were you diagnosed?
 
Will probably be cancelling my surgery with gyn. Should be hearing today from gyn/onc's office that can get me in fairly quickly. I was told by gyn/oncs office that couldn't get me in--"Do not have surgery with gyn if there is any chance at all it could be cancer" They told me to try another office.

valariekeller 09-26-2005 10:00 AM

New to Health Board.... need advice
 
Hi there. My name is Valarie and I need advice. (sorry, couldn't figure out how to post a new message.
Two years ago I was diagnosed with severe Endometriosis. Well recently, I've been spotting after sex, my periods are heavier than they've ever been and I've have a lot of stomach pain. I went to my Dr. and he automatically said that it's probably the endometriosis back again. He did do a pelvic untrasound and a test for STD's...both were clear. He said to just wait and see if my symptoms clear up. I've been doing some research on line and it seems that these are classic signs of Cervical Cancer. I've insisted on a pap test (the one I had almost a year ago was clear) and will be having that October 7th. I guess I just need advice. Should I seek a second opinion even if the pap test come back clear? Just a little worried that the doctor is automatically blowing this off as endometriosis and might miss something... or, am I worrying for nothing.
Thanks for listening!

IwishIwereaman 09-26-2005 01:44 PM

Re: Stage 1 OC - How were you diagnosed?
 
My understanding is cervical cancer has no symptoms. And that it forms slowly, so if your last pap was clear last year, than just go for anohter yearly pap. If its dysplasia ( causes cervical cancer) than your treatable easily. Cervical cancer takes time.

valariekeller 09-26-2005 02:24 PM

Re: Stage 1 OC - How were you diagnosed?
 
Thanks for replying! I've just heard, and read some horror stories of women with the only symptom of spotting after sex and having a clear pap test previously only to be diagnosed with cervical cancer. Just wanted to know whether to be firmer with my Dr. Thanks again!

IwishIwereaman 09-27-2005 07:27 AM

Re: Stage 1 OC - How were you diagnosed?
 
Yes, there is always exceptions to the rules. But generally just stick to your paps, and you will be just fine!

lotta 09-30-2005 08:40 AM

Re: Stage 1 OC - How were you diagnosed?
 
Valerie,

How were you diagnosed w/ endo 2 yrs ago? I also have endo and the only way the Dr.'s know for sure is to do a laproscopy. They can't tell by an ultrasound, blood work or pap smears. To me, it does sound like endo could be the issue. As there is no cure, just treatment for the symptoms and it does grow back. But don't let the Dr. blow it off as nothing. I don't know how old you are or if you do or want to have children but if endo is left alone to grow, worse case scenario, it could cause infertility. I would suggest discussing having a laproscopy w/ your Dr. Are you on birth control? The pill can keep it contained and slow the growth.

Good luck!

valariekeller 09-30-2005 08:51 AM

Re: Stage 1 OC - How were you diagnosed?
 
[QUOTE=lotta]Valerie,

How were you diagnosed w/ endo 2 yrs ago? I also have endo and the only way the Dr.'s know for sure is to do a laproscopy. They can't tell by an ultrasound, blood work or pap smears. To me, it does sound like endo could be the issue. As there is no cure, just treatment for the symptoms and it does grow back. But don't let the Dr. blow it off as nothing. I don't know how old you are or if you do or want to have children but if endo is left alone to grow, worse case scenario, it could cause infertility. I would suggest discussing having a laproscopy w/ your Dr. Are you on birth control? The pill can keep it contained and slow the growth.

Good luck![/QUOTE]
Hi Lotta,
Thanks for your reply. I was diagnosed with endo because he did a D&C to see what was going on. I'm 43 years old, so I don't want anymore babies :) Also, I'm high risk for Breast Cancer (mother, grandmother had it... I've already has 3 lumps removed!) so the pill is not an option.
Last time I had endo Dr. said it was a severe case. This time feels very different with lots of different symptoms... bleeding after sex being one of them...and slight cramps almost all month long. I am going for a pap test and biopsy Oct. 7th so I'll know more then. Dr. has suggested a hysterectomy.
Thanks again for taking the time to reply.


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