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 treeshouse
Posted November 10, 2008 at 7:43 pm
Report post

Hi- That is my exact story, except no fluid and smaller tumor, only one. I had ovarian cancer stage 1a. I had to beg for help, no one believed me for a long time (years). You need to see an oncologist-gyn right away, pay for it yourself /or don't pay and let them bill you and worry about the payment later if you can't get what you need from your insurance. My CA-125 went from 42 to 74 in weeks. I had all the same symptoms you are describing. Please set it up tomorrow for as soon as possible. A CT Scan showed the problem better and got me referred to an onc-gyn. You have to advocate for your self and push. Do not take no for an answer. Until I got to the oncologist-gyn no one took me seriously. And even they told me there was only a 10 percent chance I had cancer. I have no insurance and I am now going bankrupt because of my diagnostic tests (my surgery was paid for by a charity). Point is- who cares about the money- Do not let money be a factor in your pursuit. I am cancer free today because I kept pushing. I thought I was crazy too for a while. Sorry to ramble. Please let us know how this turns out.

By Shawnsanders
Posted November 10, 2008 at 8:06 pm
Report post

Thank you so much treeshouse for taking the time to respond!
My gyn refered me to a gyn/ong but he's the one that said my symptoms were not that of ovarian cancer. When I asked him what the symptoms of ovarian cancer ARE he said "They could be anything, but not the bloating, nausea, feeling full etc" I am going to another gyn/onc that my gyn reccomended on Friday. Hopefully I will be taken seriously. I feel like saying forget it and seeing if it will go away, but I know that something is wrong. Thanks again for responding!

By Freedie22
Posted November 10, 2008 at 8:28 pm
Report post

I definitely think you should keep pushing to get an answer--You really have to be your own advocate in today's healthcare industry. However, I did want to give you some information to try to ease your mind. The CA-125 gives a lot of false positives (>35)--which is why a lot of insurance companies don't cover it. I was told by my mom's gyn/onc that it can be elevated due to anything going on in the abdomen (even appendicitis). Another bit of info--a lot of women have ovarian cysts--they often go away on their own (which I've experienced).

I had similar symptoms to you from GI problems rather than gynecological origin. In Sept. of last year, my stomach blew up to look like I was 6 mos. pregnant. I went to my PCP, my GI doctor, & my gyn. I always have my CA-125 drawn usually once or twice/year (I lost my mom to ovarian cancer 2 years ago--and she fought it for 3 years--so I was actually younger than you when I first started getting tested). My CA-125 was normal, CT & ultrasound showed small cyst on my right ovary (which went away on it's own), X-ray w/small bowel follow-through was also within normal limits. They simply couldn't explain it--I also had been having uncontrollable diarrhea that has kept me out of work for over 2 years. Turns out I have biliary dyskinesia (fancy way of saying too much bile b/c my gall bladder was removed). I found the diagnosis on my own (actually saw it on "Mystery Diagnos" on Discovery Health Channel)--called the Dr. from the show the next am and was told to ask my GI for Welchol (he had previously tried it--but dose wasn't strong enough). I was finally normal again on the new dose until Feb. of this year when I perforated my bowel in 2 places--had emergent surgery (removal of perforated area of sigmoid colon, appendectomy, & colostomy (yes...the bag--totally disgusting!). I got peritonitis, sepsis, went into Acute Respiratory Distress Syndrome--spent 8 days on a vent and woke up in an ICU 2 weeks later--I really shouldn't be here today!

Anyway, I'm rambling again, my point is listen to your body...you know it better than anyone. Try to find out the cause from several different physicians and different specialties--I'd see a gyn/onc & GI to start. Your symptoms definitely match those for Ovarian CA; however, they also describe many GI problems as well. If you don't mind my asking, when was your last bowel movement?--You have classic symptoms of a bowel obstruction (left untreated, you'll perforate your bowel or the part of the bowel that is oxygen deprived (lack of blood flow due to obstruction) could die, resulting in your needing surgery to remove dead tissue or infection can spread throughout peritoneum (peritonitis) and you could follow the path I did.

I don't want to scare you, I don't want to dismiss your symptoms either. Follow up with new physicians if you have to as soon as possible. Good Luck and if you have anymore questions, you can email me at freedie22@comcast.net.
Colleen --Oh, one more thing, regarding how wrong a sonographer or radiologist can be--the report from one of my CT scans said I had had the kidney (not R or L)--I think he meant gall bladder as I believe this was before my colostomy reversal, when they had to remove my R ovary and fallopian tube due to an abcess that ruptured during surgery (my L is full of adhesions and must've been infected at one point as well). Any diagnostic test is only as good as the person who interprets it. I always insist (forcefully, at times!) to have my physicians review the actual films--not just the radiologist report. Always better to have another set of eyes look at it. My gyn & my surgeon saw a benign liver cyst on the CT--the radiologist never mentioned it (Fortunately, it was nothing to worry about). FYI--they never could explain the bloating in my belly and it is starting again so I'm going back to the gyn this month & GI next month.

By jeaniet
Posted November 10, 2008 at 9:03 pm
Report post

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

By kmarienap
Posted November 11, 2008 at 8:30 am
Report post

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 charz56
Posted November 11, 2008 at 8:54 am
Report post

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 foxynana
Posted November 11, 2008 at 9:33 am
Report post

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 FavoriteAunt
Posted November 11, 2008 at 11:17 am
Report post

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 Lemona
Posted November 11, 2008 at 11:33 am
Report post

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 Kellie63
Posted November 11, 2008 at 11:51 am
Report post

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 Shawnsanders
Posted November 11, 2008 at 1:02 pm
Report post

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 zircons
Posted November 11, 2008 at 2:06 pm
Report post

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 jeaniet
Posted November 11, 2008 at 9:03 pm
Report post

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 Shawnsanders
Posted November 11, 2008 at 9:57 pm
Report post

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 MrsSumners
Posted November 12, 2008 at 4:31 pm
Report post

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 gunpowderandlead
Posted November 13, 2008 at 9:07 am
Report post

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 Rose2
Posted November 16, 2008 at 9:06 am
Report post

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))

Welcome to Inspire!

Explore topics in this discussion:

24 replies

Add to the discussion

OCNA on Twitter

Group leaders

You