symtoms

Oh my goodness. I am so frustrated. Went to the gyn with symptoms of bloating,gas, ab pain nausea, some vomiting, frequent urination, feeling really full and not being able to eat much (I had a clean colonoscopy 6 months ago). I didn't know anything about ovarian cancer symptoms (so it's not psychosymatic) My Dr did Trans vag ultrasound and a bunch of blood tests, including ca125. Everything came back normal except ca125 was slightly elevated (40) The ultasound sonographers report said I had some fluid in the pelvis (not much) and three cysts on right ovary (The largest measuring 17mm, and multiple tiny cysts on left ovary. but the radiologist report said "No fluid in pelvis, no cysts etc. Had to beg my Dr to look at the actual pictures he said not to worry come back in 3 weeks (Different time in my cycle) to take ca125 again. Ca125 was still 40 3 weeks later. Dr ordered ct scan radiologist noted some fluid in pelvis and a 27 mm cyst on my right ovary that has "a Contrast enhancing rim" Gyn refers me to oncologist. Went to the oncologist he said (without even asking about my symptoms) that it was not cancer blah blah blah. He said my symptoms are "Confusing" and don't point to any one thing. He said it is probably endo and said I could have the right ovary removed (just to be sure) but that he would not do it, he would have a reg gyn do it. He said he would NEVER do a ca125 on someone my age, and that my symptom were not that of ovarian cancer (???!!!) I feel like a hypochondriac but I have had symptoms every day for a month and a half. My stomach is 4 inches bigger than it was 5 weeks ago. I'm not TRYING to have ovarian cancer, but everything seems to point to that and my symptoms are driving me nuts and keeping me (and my husband) up at night. I am so frustrated!!! the still slightly elevated ca125 and the cyst that grew a cm in three weeks did not get an explanantion from the oncologist, he said "It could just be sonographer error (If there is that much of a margain for error that what else did they error on???) I feel like I am battling to be taken seriosly!! Even by an oncologist I didn't aticipate this. Has anyone else had this experience?

By momanderson920
Posted November 17, 2008 at 1:39 am
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Did the sonogram reveal a solid tumor? I had ovarian cysts when I was still menstruating, but they were fluid filled cysts and those are not cancer I am pretty sure. And they can distinguish the fluid filled from the solid ones on CT and ultrasound I believe.

By momanderson920
Posted November 17, 2008 at 1:35 am
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Don't panic as it may not be cancer, but do act without delay and make an appointment with another gyn/oncologist. My tumors did not look like cancer to two gyn/oncologists and they both said they can not tell for sure until they go in and do a biopsy. Mine was ovarian cancer but I had already gone through menopause so an elevated CA125 due to non cancerous gyn conditions was unlikely and my CA125 was in the high 200s. I had upper GI symptoms which I was told by the gyn/oncologists is often the first signs of ovarian cancer as often there is no pain. Being young, there are many reproductive conditions that can elevate the CA125 and there are benign cysts and tumors that can develop on the ovaries but since ovarian cancer can be cured if caught in Stage I, whereas has a poor prognosis if it progresses to Stages III and IV, it is better to get it checked out and ruled out. But again, it is very likely it is not cancer....but it is always better to be safe than sorry.

By melf
Posted November 17, 2008 at 12:11 am
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Unfortunately, your story is so typical. Except, You continue to fight to get the medical people to listen to you. Dont stop. Doing so could mean your life. This is why so many of us are diagnosed during the latter stages where prognosis is not favorable.

KEEP FIGHTING and do not let even one of them tell you that you are a fool and wasting their time.

Melissa

By Rose2
Posted November 16, 2008 at 9:06 am
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When the drs starting checking me out after many symtoms and being told ...this is nothing.....my Ca125 was in the 40's. One of the test showed something in my abdomen and on my ovary. The gyn I was sent to said it could not be ovarian cancer , as my CA125 was not high enough. They ran test for lung cancer, colon cancer etc. All test for them came back negative. Finally I went to Madison WI and the gyn /onc there was not sure it was ovarian cancer . Upon doing surgery, I was found to have extensive OV cancer, staged at stage IIIC. The DRs are still learning that not all ladies have high CA125. I did not!
Even tho I had all the symptoms of ovarian cancer. The large extended abdomen, pain in lower abdomen, extreme pain in the lower back, increased urination, gas, bowel problems, etc. Ladies need to be aware of this, and pursue medical attendtion when these symptoms persist. A low CA 125 does not mean you do not have ovarian cancer nor does a high number mean you do. Our bodies are all so different. I am praying for wisdom for the DRS . God Bless. Love and ((HUGS))

By gunpowderandlead
Posted November 13, 2008 at 9:07 am
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Shawnsanders,
Go get another opinion, find a gyno/oncologist. Go as fast as you can. These are the symptoms of ovca! you should ask to get a laprascopy proceedure to get a visuale inside your abdoomen and they can then get a tissue sample from the tumors which then they will send to a lab and they will check it for cancer. I wish you well and God bless you.

Stacy

By MrsSumners
Posted November 12, 2008 at 4:31 pm
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Very familiar to what I was going through a year ago and I ended up with Low Grade stage III. Not to scare you but you need to keep pressing forward to an answer. Maybe a female Onc/GYN?? - I live in Houston so I am fortunate with our Medical Center and MDAnderson. It wasn't until I had the vaginal ultrasound that I was taken serious after 3 months of all kinds of other tests. Best of Prays and Wishes to you. :)

By Shawnsanders
Posted November 11, 2008 at 9:57 pm
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My appointment on Friday is with another dr at Anschutz, His name is Behbakt (Or however you spell it) Do you think he will be good? Or should I wait 'till I can get in with Davidson?

By jeaniet
Posted November 11, 2008 at 9:03 pm
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did you call Davidson out at Anschutz?
Even if you have to wait until December to see Davidson, Schmidt or Davis, they all might be worth seeing for a second opinion since I think they are the top 3 in CO.
Jeanie

By zircons
Posted November 11, 2008 at 2:06 pm
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Is the doctor you are seeing in the same place as Drs. Schmidt or Davis? If you get no satisfaction from the doctor on Friday, make an appointment in December with one of the other doctors. I would listen to the recommendations of the ladies in Colorado. Good luck!!

By Shawnsanders
Posted November 11, 2008 at 1:02 pm
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Thank you so much for responding and sharing your stories! I feel stronger going into the appointment on Friday! I'll let y'all know how it turns out. I tried to make an appointement with Dr Mary Jo Schmidt or Dr Davis, but they had nothing available until December.....so I'm going to go see Dr Kian Behbakt (Sp?) Has anyone heard of him?
Thanks again! I'm feeling a little less crazy. I think I'm going to just insist on a laporoscopy and the removal of the right ovary and have it biopsied. Are the "frozen sections" during surgery reliable?

By Kellie63
Posted November 11, 2008 at 11:51 am
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I have written my story to Robin Roberts and would like to share my story. It took 2 years and 14 doctor before someone would listen to me.. I urinated blood for 8 month. Had very much the same symptoms as you but my back pain was horrible. I finally insisted that my gyn do a lap to look at the supposed cyst's on my ovaries. before the surgery my doctor told that I wasn't Gilda Radner and this surgery wasn't necessary. I was in surgery for 8 hours and he didn't even have an oncologist present until he knew the cancer went beyond my ovaries. It had spread to my bladder, colon, peritoneum and liver. I was never given the CA125 until I was in surgery and it was 42. Not all cancers including some ovarian cancer cause a really eleved CA125. CA125 is a great test. I'm not trying to scare you but you know your body if you feel something is wrong you make your case and stick by what you need done. This whisper cancer doesn't whisper it is screams. We the patient need to be heard. I was 40 at the time of my diagnosis. I didn't fit the profile so not one doctor would listen. I found my cancer.

By Lemona
Posted November 11, 2008 at 11:33 am
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It sounds like you've got some great referrals to other gyn/oncs from the ladies on the site. No matter who you go to see, print the list of symptoms from the OCNA website. No one wanted to have OC, but we all wanted to know what the cause of the symptoms are. If not OC then what????? Good luck and keep us posted. We are all hopeful that it is not OC!! XOXO

By FavoriteAunt
Posted November 11, 2008 at 11:17 am
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Those symptoms sound too familiar to ignore, and I can't believe your oncologist responded the way he did. Time for you to immediately find a gyn/onc and go as quickly as possible. Your symptoms are not improving and you need to be checked.

I'm glad you are going this Friday. You are not a hypocondriac - it's the doctors that are the problem because they do not listen. I'll bet almost every woman on this site was mis-diagnosed for months before someone finally got the message. I hope you get the professional help you need and feel better soon. Keep us posted.

By foxynana
Posted November 11, 2008 at 9:33 am
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Dr Kevin Davis or Mary Jo Schmidt are both GYN-Oncologists at Rocky Mountain Gyn Oncology.
I see Kevin Davis but both doctors are awesome and specialize in ovarian and uterine cancers. I have Stage IIIC ovarian cancer and have been seeing Dr. Davis for nearly five years. Make an appointment TODAY!!!
Your life may depend on it! And best wishes!

By charz56
Posted November 11, 2008 at 8:54 am
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Good morning Shawnsanders:

I had the same experience. I knew something was wrong and kept going to the doctor. She had an excuse for all of my symptoms - your tired because you do too much, you have iritable bowel, hence the reason for constant diareha. Three days before being diagnosed, my doctor actually hollerd at me, becasue she said there was no reason my back hurt so bad and that she was not giving me pain meds. I was pissed, told her I did not want pain meds, I wanted to know what was wrong with me. I left that day crying. I knew something was wrong and no one would listen. The kicker is three months prior to being diagnosed I had my tubes tied and they did not catch this. The only reason I got help is because I woke up one morning in such pain I had to call 911. Come to find out the tumor twisted my tube and thank god it did. I was diagnosed with OV 1a. I thank god everyday. But don't give up! We know our bodies. Your not crazy. I will keep you in my prayers.

By kmarienap
Posted November 11, 2008 at 8:30 am
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Definetely go to onco/gyn. If there is a special cancer center where you live, please contact them immediately. It is truly a shame that some of these "doctors" don't know what they are talking about. Keep pushing as it is your life! Karen

By jeaniet
Posted November 10, 2008 at 9:03 pm
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Not sure what your insurance is, but try to get in to see gyn/onc Dr. Davidson at Univ/Anschutz. Also I think there is a gyn/onc at either Porter or Swedish who is Mary Jo Schmidt (I think). I just moved from Colorado and although I had Kaiser, many other women I met who had OC were being treated by Davidson or Schmidt.
Good luck getting some answers.........
Jeanie

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