Ovarian Cancer Support Group

Ovarian cancer is a malignant ovarian neoplasm (an abnormal growth located on the ovaries). It is the fifth leading cause of cancer death in women and the exact cause is unknown. Join this community to get support if you or someone you know is affected by ovarian cancer. Share your story and learn from the experiences of others.

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Diagnosis: Tests and Questions

IslandLuvr
IslandLuvr
Hi everyone! You are such a friendly group, and I'm very scared.. so I thought I would come in and ask some questions. I know you can't diagnose me, but I want to see what you all thought, and to make sure my doctor is doing the right thing as far as tests...

I'm 54

My symptoms:

-IBS (I go 4 and 5 times a day!-- especially in the morning-- with nausea). This is nothing new.. had a wonky tummy for a number of years, but the going so much is kind of new.
-incontinence (leaking small amounts during the day, I can't even feel it when it happens.. this just started a month ago)
-I always feel like I have to pee.. but it's not an "urgent" feeling
-pelvic discomfort (mostly on the near the belly button on the right)

Also:
I have gained a lot of weight over the past few years... but most of it is in my abdomen. **How do you tell if my big tummy is bloating, or just fat?**

I went to the gyn yesterday, and she has ordered three sonograms of the pelvic area. She never mentioned OC as a possibility.. but I'm worried because my grandmother had it.

I asked her about CA125, and she said that it's not a good diagnostic tool. Why would she say that.. or do you think she just isn't considering OC?

I do have a fibroid that I've had for a number of years and is still there.

So... any comments, advice, etc. would be so much appreciated. I want to make sure I do everything correctly now so nothing is missed.
deleted_user
deleted_user
I think you should get your tummy sorted out with a bowel specialist, to rule out any disease there, you may need a colonoscopy for this. The incontinence is an embarassing problem, I had this, and after a few tests they said it was a pelvic floor problem and to take Imodium to stop the frequency in conjuntion with pelvic floor exercises. this has helped a lot. All my gastro problems were not related to O.C. The bloating you get with O.C. is fluid around the peritoneal cavity and its onset is pretty rapid eg it took only 2 weeks for me to collect 7 litres of fluid. The pelvis scan will determine if you have fluid. You need a vaginal ultrasound to look at your ovaries, so ask for that. A CA 125 is not a good diagnostic test by itself, because a high reading could be related to some other disease like an infection or other. I don't think your doctor is considering O.C., but for your own peace of mind I would insist they do the appropriate tests seeing your grandma had it. But its good that you are being so vigilant because O.C. is so hard to detect early. Good luck with everything. Carol.
IslandLuvr
IslandLuvr
Hi Carol! Thank you so much for taking the time to answer my questions. You really helped a lot!

I have had tummy troubles over the years, and have had complete workups, with nothing showing up. They keep telling me IBS.. but this "going" 5 times a day is new... as is the incontinence. The incontinence really alarmed me. I've never had that before.

Well, I guess it's fat.. because I've had my big belly for a few years now. It certainly wasn't rapid onset. Too many Twinkies!

I'm having three tests done on Monday.. including the vaginal ultrasound. She also ordered a pelvic and a trans dominal.

I'll let you know what the tests say once I find out. Thanks again.. I feel better. Having lost my grandmother to OC before I was even born..I started becoming concerned when I began looking up why I could possibly be incontinent and have these tummy troubles.
deleted_user
deleted_user
Hello
IM sorry to hear your going thru all this . It was very frightening when I first started having problems. My Bio mother had O.C.. so i have in a panic. the Doctors didnt seem to think i had much of a Problem.
I had My Hysto Surgery 2 weeks ago.
And i now have Answers. I dont have O.C., but Uterin Cancer that when to my overeys and lymphnodes. they Staged Me at 3c. and i start all my Treatments this next week.

So i say Have it all looked at . the Ca 125 for me was was only Slightly elevated.. but im 38 .. so my doc's just thought Endo.

If you find the right team of Doctors and nurses they will set most of your fear to the side for you.

I have a great team now and everything I so much better for me. they are walking me throu it all.

((HUGS)) and best of luck
Tylyndel
deleted_user
deleted_user
The CA 125 isn't needed for diagnosis, and since it can be high for some people without having ovca, perhaps your dr. just doesn't want to (a) stick you unnecessarily) and (b) not get you upset without being warranted.

The CA 125 is good after diagnosis, though, to see whether it goes up or down. The number itself isn't as important as the movement. Mine was 678 before surgery (I was Stage 3c) but I know others also at the same stage who were up in the thousands. At my lab, 20 is considered normal.

Just be sure that your dr. knows about your grandmother and that you ask specifically about how your ovaries look on the transvaginal. If there is anything abnormal, I'm betting you will then be given a CAT scan as well as CA 125.

If there is any question about whether you may have ovca, try to see a gynecological oncologist. They are the best at getting the correct diagnosis. This is not a disease to "wait and see." Be persistent until you feel comfortable that you have an accurate diagnosis.

Best of luck - hopefully it a very treatable problem.
deleted_user
deleted_user
The CA 125 isn't needed for diagnosis, and since it can be high for some people without having ovca, perhaps your dr. just doesn't want to (a) stick you unnecessarily) and (b) not get you upset without being warranted.

The CA 125 is good after diagnosis, though, to see whether it goes up or down. The number itself isn't as important as the movement. Mine was 678 before surgery (I was Stage 3c) but I know others also at the same stage who were up in the thousands. At my lab, 20 is considered normal.

Just be sure that your dr. knows about your grandmother and that you ask specifically about how your ovaries look on the transvaginal. If there is anything abnormal, I'm betting you will then be given a CAT scan as well as CA 125.

If there is any question about whether you may have ovca, try to see a gynecological oncologist. They are the best at getting the correct diagnosis. This is not a disease to "wait and see." Be persistent until you feel comfortable that you have an accurate diagnosis.

Best of luck - hopefully it a very treatable problem.
IslandLuvr
IslandLuvr
Thank you Ty and One Day. Excellent advice, and now the CA125 makes more sense. I thought she was not being thorough, and now I understand why she didn't do it. I do know I have a fibroid.. Have had it for a few years, and had a transvaginal back then. Maybe it's pressing on my bladder. Well, I go in tomorrow for the ultrasound, and likely won't hear anything for a few days. I'll let you know the results. Thank you again!
IslandLuvr
IslandLuvr
Ty, sorry you have had to go through all of that. I hope you're not in too much pain.
IslandLuvr
IslandLuvr
ok.. I promised to come back with results. The doctor still has to review the ultrasound, but the nurse said there's nothing to worry about, and that the fibroid is still there. I'm waiting to find out if it's bigger, and if that's what's causing some of my problems.

Thanks again for those of you who replied to my questions.