← Return to Ovarian Cancer: Anyone have trouble getting diagnosed?

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I'm a 42 year old with family history of colon cancer (maternal grandmother in her early 50's) I also believe my paternal grandmother passed from cancer as well (not 100% sure though). I did test positive for BRCA in my DNA. In 2009 I had polyps removed during a colonoscopy and have not gone back for another scan.
Four months ago, I started feeling ill (lower back pain, hurting to pee, etc). Couldn't pinpoint an exact symptom, but I did go to ER where I was diagnosed with UTI and sent home with antibiotics. About 3 weeks later, I ended up in the ER again for same issue, told I had UTI and sent home, more antibiotics. Three weeks after that is when the nausea just hit me like a ton of bricks. Had a KUB scan which only found 5mm nodule in base of right lung,. I was Dx'd as having kidney infection, given yet stronger antibiotics and sent home. Urinalysis had come back with blood in urine, but not an infection.
During that time, I had had a period that lasted over a week (which was very unlike me). The following period after that was about awful. The clotting was extreme and lasted only 24 hours. Also had bleeding/pain during intercourse. Now, I'm also noticing I'd been feeling weakness and extreme fatigue. Went to my GP where some labs were done and a referral was given for OB Gyn. During this time, I'm noticing these symptoms are persistent. Good days had become a thing of the past and now this severe bloat has me looking like I'm about to deliver. But this bloat seems to have started to mess with my shoulder, breathing is in short breaths.
So I have my appointment with OB where he suggests a hysterectomy, gets my CA 125 along with CBC. The CA 125 cane back 22 and now the last three cbcs have come back with elevated WBC/lymphs absolute. Dr sent me home to take provera in case of endometriosis, but before I could even start that, I started my period 2 weeks early. I also had a seizure with this one. It has been 2 years (longest ever) since I had a seizure, was Dx epilepsy (catamenial) at age 14.
I then get a call from Dr stating I needed to go in and then told me my hysto was off the table, that he believes he will be finding something and do this week just be exploratory laparoscopy.
Last night, was in ER again for my extreme bloating. Was told they only drain for person's with liver failure. Have me a CT with contrast.

All scans have pretty much clear. A transvaginal showed an ovarian cyst but that was normal

My question is:. Can CTs miss ovarian cancer, or could I have colon cancer and be missing it? Also, if it's actually in my colon, would Dr be able to recognize it during laparoscopy if it's not in ovaries? My quality of life lately is in the toilet and I just want to start feeling human again.

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Replies to "I'm a 42 year old with family history of colon cancer (maternal grandmother in her early..."

@shesmikey, great questions. I think you should repeat these questions to your OB Gyn as well. It sounds like you are getting all the tests that are used to detect ovarian cancer. See the American Cancer Society's list here:

I'm also bringing in @starko @lynann99 @rochellewisner @odette and @susu2 to this discussion as they may be able to share their experiences about diagnostic testing and questions to ask.

Shesmikey, it's important that you feel confident in the care that you're getting. Keep asking questions and don't forget that you can also ask for a second opinion. Are you home now? How are you feeling?

I am going out on a limb here because I am prejudiced in favor of Mayo Clinic. At the very first signs of ovarian, my husband and I traveled 2500 miles to get the best care possible, rather than accept what care was available locally. Within the 1st week, after giving Mayo only a few hours noticed, I had multiple tests, labs and surgery scheduled. The healing had begun!
Not sure where you live but you must do whatever is necessary to get the most accurate diagnosis possible and the quickest. Go now to the best there is! You are way too young to “live life in the toilet”.