Doctors are brushing me off

Hello, KatieLea,

My CA125 and CEA and CA199 were all normal, CA153 was elevated.  My only symptom were bloating and lots of gas.  Later I was diagnosis with stage III OC.

Palor

KatieLea said:

Thanks for replying, Palor!

That's what concerns me. I haven't heard of CA 153 but I have another appointment to push for more tests tomorrow so I'll bring it up. I surprisingly have had no bloating whatsoever. Did you have imaging tests done too? 

Yes, I have CT and ultrasound done, but before the surgery, it was not conclusive.  The doctor even said "You do not have OC".

KatieLea said:

What lead to your diagnosis

What lead to your diagnosis if you don't mind me asking? I'm sorry, I know I haven't been diagnosed and do not want to seem insensitive. My family has many histories of cancer, including my mom mom who is a breast cancer survivor so I'm very worried. I had a scare last year when my gyno found a small lump and have been grateful after it was found to be just normal wear and tear from nursing.

I've had two CT scans and both were "unremarkable" so no one wants to look further without a tumor popping up on mine. 

I had a large lump in my abdomen for years, I did not bother to check it up as there is no other symptoms.  Lately as it becomes larger and bloating and lots of gas, I went to check up, and because the size (close to 20 cm), it has to be removed.  During surgery, they found I had cancer, so the debulking type of surgery was performed instead of just removing the mass. 

Hi Katie,

I'm sorry you're going through this.  It's very frustrating and this happened to a lot of us before being diagnosed.  The CT scan was pretty much clear. which is good.  But the swollen lympgh nodes and fluid in the abdomen are curious.  Has anyone given you any guess as to why these are there?

If I was in your position, and you don't get any answers soon, I would try consulting with a functional medicine doctor or naturopath.  They work hard to find the cause of symptoms and address them.  Hope you get some answers soon.

My girlfriend was diagnosed with Stage 3 OC last year and is currently in remission. She had major bloating and serious stomach pains and went to the hospital.

So, doctors will play the %s. A lot of symptoms, especially in the vague and largely opinionated manner that patients describe them are common to both serious diseases and a whole lot of nothing. So, if you're a young person, they're not going to have you go through a whole battery of tests for worst case scenario. That would be costly, and freak the patient out and waste a lot of their time and $.

By all means, get the lymph nodes checked out. But I would say at some point, you have to trust the data. They use CT and CA-125 to monitor recurrence in late stage OC survivors where the odds of recurrence are good. When those tests are good, we go celebrate.

I also don't think it's possible to have an Ovarian Cancer that has spread to lymph nodes, when you have no tumor in the ovaries. My girlfriend's tumor was the size of a grapefruit. Literally. But again, not a doctor.

BTW, did you know in some countries where healthcare is free, the wait for something like a colonoscopy or endoscopy is like 6-8 months? Even if you are of elder age and have the symptoms. Yea, it's true. So, anyway it could be worse. 

I started with an endoscopy and colonoscopy in Jan 2016, symptoms: terrible gas, bloating, diarrhea, constipation and stomach pain, I thought I had an ulcer.  Diagnosis, H. Pylori, everything else normal, prescribed a 2 1/2 week course of very strong antibiotics, it was downhill after that.  For 7 months I suffered with more of the same symptoms, just amplified.   My skin became dry, I was losing weight, eating GAS-X like they were candies, diahhrea, constipation,dizziness, abdominal pain, I got worse and worse.  My GP treated me for lactose intolerence, IBS, leaky gut, God knows what else.  My MAR 2016 blood test were fine, but I felt so awful,  I didn't know what to eat, everything made me sick.  I continued to work, no choice, taking whatever prescriptions my GP doled out.  Out of desperation in late AUG 2016 I went back to the gastro, I thought maybe he had knicked something, maybe candida overgrowth from the antibiotics.  He took one look at me and said, "This isn't gastro, you need to go and have a blood test and a PT Scan. Pet Scan and C125 blood test results the next day, oncologist meeting the day after that,  surgery 2 days after that ,09/02/16. Right ovary cancerous, encased within a 9lb mass/sac of fluid, cut from stem to stern, radical hysterectomy, 6 hours of debunking, diagnosis: stage 1c ovarian cancer.  I was lucky, that sac prevented the cancer/fluids from spreading, 6 rounds of chemo, cancer free 1 year 7 months, C125 results today 6.3, C125 levels pre-diagnosis, 47,000.  Not once did my GP ever think to send me for a C125 blood test, he saw me every 2-3 weeks, took my $30, I was losing weight, but he never considered cancer, he stopped hearing me.  DON'T LET THEM BRUSH YOU OFF. You know your body better than anyone.

Dear KatieLea:

Prior symptoms.  Lower back pain, left leg pain, burping (lots), sometimes difficult swallowing unless I had some water; feeling unwell, peeing a lot.

Prior to my diagnosis, I started having lower back pain.  Actually it felt like pain in the lower middle of my body.   And then it started with my left hip.  It got to the point where I would almost double over.  I went to my PCP who at first thought I was depressed (HA! - not the case - I was just in pain).  Then he prescribed a colonoscopy.  That came back normal.  So I thought I would see my gyne.   He advised me then that I did have severe endometriosis (which up until that time I didn't know).  He wanted to do a laproscopy.   The laproscopy came back as severe endometriosis (no cancer) and that I did have a lot of scarring.  He wanted to do a hysterectomy but first wanted to put me on Lupron for six months to help "soften" the lesions so that it would make surgery somewhat a little easier.   I asked about having scans and he said endometriosis would not show up.   I was disappointed to have to wait 6 months for surgery as I was in so much pain.  He assured me that I didn't have cancer.  At this time I was 44 going on 45.

I had the surgery in September of 2005.  He indicated he had his doctor friend assist him who was a gyne/oncologist.  Not because he though I had cancer, but in case they knicked something as he was very good at fixing those things.   The surgery went well except for a knicked bladder which required me to have a Foley in for a little over a week.  I went home and when I went back to have the Foley removed, I met with my doctor's assistant as he was on vacation who informed me that although the surgery went well, they found cancer and that I would need to go see a gyne oncologist.  I met with this oncologist and then had surgery 1 month later for staging.

Although my CA-125 was not an indicator and all other tests were normal, they found cancer in my Left ovary, uterus and cervix.   There was some talk as to where the cancer originated from but they couldn't determine.   They though it could be MMMT but decided it was Stage 3a Grade 2 endometrial adenocarcinoma.

I had gone over a year and a half feeling unwell.

I recently just had the same thing happen.  Too long of a story.  Similar - different doctor.   

I hope the best for you and this is nothing.   Before any of this happened to me, I knew a older woman who was going though all the symptoms I was having and she ended up having ovarian cancer, so it concerned me.  If you have any questions, please ask me!  By the way my original diagnosis was 13 years ago!

Kathy

PS  About biopsies:  They are a hit or miss.   I had a positive one (for a recurrence) and when they removed everything at surgery it was negative.  But then most of my other biopsies where negative until my most recent one.  A tumor may not be completely cancerous so a biopsy isn't 100%.