Not yet diagnosed but nervous

Hi I am a 45 yr old woman, married, two kids ages 13 and 14. Been having upset stomach and feeling like I just ate a big Thanksgiving meal for a couple of months now. Also have bad cramping after sex, nauseau pretty much 24/7, diarreah and lethargic constantly.

I let the symptoms go pretty much because I also have fibromyalgia and live with pain all the time but this cramping is really throwing me for a loop as is the big huge pregnant belly I've been sporting for a few months so I went to my doctor. She did a pelvic exam which I'm still paying for with excruciating period-like cramps. She ordered the CA125 bloodtest and I get an ultrasound tomorrow.

The waiting on the results is really killing me. Has anyone been told by the ultrasound technician that they see a tumor?

Do other people get bad cramps after having an exam?

Thanks for any and all help I can get.

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My ultrasound tech wouldn't tell me anything after she did the scan. My doctor called me the next week and said it showed something...he ordered an MRI and that was what confirmed my tumor.
Try not to worry , your doctor was correct in sending you for the ultrasound but it doesn't mean you have cancer. Think positive.

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the techs won't tell you anything...please stay positive...I know it is hard...

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Tech's aren't supposed to say anything...but mine did in a couple of ways. One she said 'that isn't supposed to be there' and when I was leaving she said....very sincerely. "i wish you the very best of luck"....I knew.
But even before going for the transvaginal us I knew...i just knew, inside. So I looked all over the internet for google images. I remembered what the cancerous images looked like and when she did my us I watched closely. I knew what she meant when she said 'that's not supposed to be there' it was a line through the center of a dark round circle. I knew from my previous research that it was called septated and implied it was a 'complex cyst' Complex cysts in turn are typically cancerous. Low and behold, I had bilateral ovarian carcinoma of the ovaries.

I was other wise completely asymptomatic except for HEAVY menstrual periods and pain with periods. I didn't have ascites. I was dx'd 1c.

Good luck, I hope you have better luck than me.
Denise

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Wow you really did your research! I've had sooo many ultrasounds over the years with my pregnancies and bad periods but never do I understand the images - aside from the babies of course =)

My us is tomorrow and honestly my mind is so paralyzed it's all I can do to get my work done and get home and sleep. I guess I'll look around google to see how hard it is to figure out but I won't do it for too long or I'll make myself crazy.

I know what you mean about just "knowing" but it took several years to get my fibromyalgia diagnosis so a lot of times I "knew" I had MS but I didn't and I "knew" I had Lupus but I didn't so who knows. I'm the queen of enigmatic disesases!

Good luck to you and to everyone. I admire the courage and tenacity that you all have endured. I don't think I'm as strong as all of you but who knows.

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In my case the doctor called me two hours after the ultrasound and said she was referring me to an oncologist - they could see the ascities. I am praying for you. Call them, don't wait.

Love & praayers,

Eileen

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You are as strrong as anyone of us. God will give you the grace to get through it. Even if you cry or are worried, that does not mean you are weak. It takes courage to grieve - grieving means that you are acknowledging what is happening. I know you can do it.

Eileen

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It's never cancer until the final path report says it is.
Think positively and strongly that you will not allow cancer into your body. Hoping for you and wishing you the best results.

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Hi.. :-) I had a cyst for over 3 yrs. I had a transvaginal and it looked ok it had grown... even my lining of uterus looked good. well.... it wasnt until i thought i was having a gall bladder attack and had a CT with contrast that it showed a couple of enlarged lymph nodes... then went to onco/gyno. I must say I "knew" last november ..... 2 months BEFORE the doc's ... I had started bleeding...it lasted for 5 weeks..spotted, then got a little more than that.. also had a smelly discharge... get this.. pap and endometrium biopsy showed NORMAL.... and IT STARTED IN MY UTERUS! then went up to ovaries,to lymph nodes (3) of them..then down to cervix!
It also hurt when I would have sex, thought it was just because i had a tilted uterus.
I have a 12 year old little girl, so im GOING TO SURVIVE.. and IF you find that you have it..YOU WILL SURVIVE TOO.. I was told by a very loving and smart lady on this site.."Put your big girl panties on and fight like a girl"
Remember... its not cancer til the pathologist says it is.
Love,Kim

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My first u/s was of my kidneys and bladder because I presented with frequent urinary tract infection (UTI) symptoms. The u/s technician, at the time, did not say anything to me about the 13cm mass on my ovary. My urologist called to tell me about the findings, and that's the first I heard of an ovarian cyst. In a follow up pelvic and transvaginal ultrasound ordered by my gynecologist, the technician talked to me about the cyst and how it completely obscured my left ovary but did not say anything about the composition of the cyst. An ultrasound can give a doctor clues about the possibility that a cyst is cancerous, but it cannot diagnose ovarian cancer nor can it determine the stage or grade of a cancerous tumor. Also, size has little to do with stage and grade. Know that most ovarian cysts are benign, so try to focus on your very good odds until you hear otherwise. Good luck.

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By the way, just saw that ccmom posted a discussion today titled "Good luck and prayers to all, surgery update." ccmom presented with cysts on both ovaries including a complex cyst on one side. In the discussion, she revealed that she had robotic surgery, and the outcome dx was benign serous cystadenoma. Just like Kim (wannaknow) said--it's not cancer until the pathologist says it's cancer.

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Thanks everyone. I'm trying not to worry but still I don't have results. I know this is normal and it takes time but I have to try to shut my brain off.

I had the ultrasound. It was the internal kind - oh my! *blink* Not for nuthin' but if sex with my husband hurts shouldn't they have at least recommended a couple of tylenol before the us????? I'm paying for it now since we're out. Trying to get the husband to walk to the corner store since I'm just immobilized with pain now.

Anyhoo, after the internal was done, which killed me, she did an external one. That all took ten minutes but what was strange was that she then said she had to check my kidneys and had me lay on both sides, breath in and hold it and she dug deep into my sides. Is that normal for a pelvic? There was nothing in the order indicating anything about checking kidneys.

This woman would make a mad poker player. Didn't talk to me the whole time and I had to be the one to ask when I'll get the results. She said the dr will get them in two hours and I should hear back in 24. Then she practically bolted out the room which was strange since she took me early so there was no time issue.

The kidney part alarmed me but now I'm wondering if it's kidney stones causing my pelvic pain and bloated stomach. I do have a low grade fever so that would be a blessing. lol

So that's that. Now the wait, which is always the hard part of life. My youngest daughter is in the drama club and they recently put on a play all about waiting. Waiting for the bus, waiting to give birth, waiting for 5 o'clock at work, waiting for the red light to change to green. *sigh*

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The blood test is still pending but the ultrasound report is done. It said I have three fibroids on my left side, two are small and one is a little bigger than the actual ovary. My kidneys are find so that was weird but the strangest part is that they couldn't find my right ovary. I asked why and they said that's very common to not be able to find an ovary.

So....maybe outta site outta mind and not to worry cuz if it were bad they would have seen it?

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I am praying for you!

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Hi... Im NOT AT ALL WANTING TO SCARE YOU... BUT...
they told me I had fibroids also... I WISH !! they didnt know for sure until after surgery. A CT with contrast did show enlarged lymph nodes... although, alot of ladies here didnt have lymph node involvment. Also, there are alot of ladies here that were told their ovary couldnt be seen... it was hiding behind their bowels..due to being overly large with tumor. Also, sometimes the CA125 isnt a good tumor marker .... PLEASE DEMAND SURGERY WITH ONCOLOGIST/GYNO.
Love,Kim

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Would they actually do surgery just for fibroids? I mean I understand there might be more stuff in there but typically when all that's documented is fibroids won't they opt on the side of the insurance company since they'd fight it without proper backup?

There's actually nothing more I'd like then to have a total hysterectomy. I'm 45 and am sick of being in bed one day a month with my period.

I haven't heard from the doctor yet, probably because my blood tests haven't all come in. The ones that did show low potassium, probably because I've had diareah for a month straight (you'd think I'd be a toothpick by now but my stomach is still distended making me look 9 mos preggers). Also it showed white blood cell of 11.2 which I guess is only a little over the limit. Everything else, rbc, creatin, etc. came out fine. Just waiting for the ca125, the sed rate and the liver panel one with the billirubin, etc. to come. Says it's expected 1/8/11 (i use patientgateway).

Well I guess I'm going to just put it out of my mind for the weekend. I finally got tylenol so between that and the neurontin I take for the fibromyalgia the cramps should be manageable until Monday. Supposed to get a LOT of snow and I'm grateful that my husband does all of that shoveling and only asks me to make him tea every so often. Take care.

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Hi... Im just saying that when I had the transvaginal ultasound they said it was fibroids... it wasnt.
I would ask for a CT with contrast... I really dont mean to scare you... i just want you to "visit" us here... not join.
Love,Kim

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Well my blood results came back and the ca125 was 12.8 so it looks good. The weird thing is that I woke with wicked cramps and bleeding and my period shouldn't be here for another week but my mom said maybe it was all that digging around they were doing.

My sed rate was 70 and I have the wbc of 11.2 so something is definitely going on. I'm going to gateway message my dr just to let her know about the bleeding and cramping today since I tend to forget to tell her things.

Thanks again for you all being here. Kim I admire your fervor and I have no doubt you will kick this thing to the curb! I feel bad about writing here where I'm not even diagnosed and quite possibly won't ever be. I just have no one else to talk to about it. I certainly am not telling my kids anything, my parents just blame everything on my weight so zippo sympathy/love there and my sister just got out of the hospital with her own new set of problems so it's just me and the net these days.

take care and hope everyone who has snow stays safe!

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Im sooo happy about your ca125 number! :-) I hope thats a good marker for you! Id get it checked again in 3 months tho if i were you... also, if they are just fibroids, that will for sure cause you to bleed! :-)
Please dont feel bad for posting on here! THATS WHAT WE ARE HERE FOR! :-)
Keep in touch!
Love,Kim

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OK here's the latest scoop:

The bleeding from the ultrasound did not stop for about 6 days. Because of that and the fact that my wbc count is high along with my sed rate I've been told to see a gyn-oncologist.

Just the title of the doctor scares the crap outta me. My appt is on Feb 2. I spoke with my older sister and she told me that when she had her hysterectomy (due to the same problems I'm having), they found a tumor the size of a grapefruit on top of her uterus. This was never found in the ultrasound or in the cat scan that she had. She never told me any of this because she didn't want to scare me. It was Stage I ovarian cancer and she never had chemo, which I thought was weird, though I have read about it in some cases.

Anyways she told me this not to scare me but to make sure that if this gyno-oncologist doesn't suggest a hysterectomy that I should get a second opinion from her doc at Dana Farber. Also she told me that in addition to our grandmother dying of ovarian cancer, that my aunt died of it too - my grandmother with the oc's daughter.

So now I wait knowing that no matter what, I am most probably getting a hysterectomy done in the next couple of months.

How does everyone deal with the emotional stress of "the wait"?

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bostonlass,

I had several ultrasounds, regular and internal. Each time one or both ovaries were not visualized. I was concerned. Doc said this was normal and happened all the time. My pain subsided a little and so I let it be. A year later the pain was back with a vengence. This time we did a CAT scan and My( PPC ) Primary Peritoneal Cancer was found. This is treated just like ovarian cancer. I had a large tumor on my omentum. I was dx w/ IIIC PPC and had my debulking at Mass General in Jan 2009, had 6 rounds of chemo and have been in remission since. I will always wonder about the ovary that could not be seen. How I wish I had the CAT scan a year earlier. Ultrasound does not pick up everything. Don't just stop here. Keep pushing until you know for sure. Tumors can be benign,but I know I wish I had not waited a year to push for an answer. I will keep you in my prayers that all will turn out well.
Hugs,
Ansophie

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