Ovarian Cancer: Anyone have trouble getting diagnosed?

Good idea. I get a CA125 every two months, plus a HE4,S, which my gyn/oncology surgeon believes is still more accurate.

I said for 2 years that I had ovarian cancer but the doctor just brushed it off. I would throw up after eating if I moved to fast as the food couldn’t get down all the way in a normal time matter and sat in my throat. Lower back ache had been there for a few years but nothing done about it. Then when I would sit down it started to feel like someone shoved a knife up inside of me. They tested for UTI and of course it wasn’t. Finally about 3 months later at my yearly physical the doctor felt something when he pushed on my abdomen. That started the blood tests and x-ray. Blood test showed cancer and I got sent to Oncology. In a whirlwind of 3 weeks, I had biopsies, MRI, CT scan, and PET scan. Then sent to Rochester to see a surgeon on a Friday. He said he already had me scheduled for surgery the following Monday. I had stage 3C ovarian cancer. Surgery done and then 4 months of chemo in my hometown area. I saw the surgeon a year after the initial life saving surgery and he told me that he honestly didn’t expect to see me again due to how many organs had cancer in them and the number of tiny tumors that he had to leave in me. But here I still am 7 years after surgery. Get the doctor to give you a CA-125 blood test. It isn’t always accurate but is the starting point to check for gynecological cancers. Good luck to you.

I was diagnosed last November with stage 3c low and high grade ovarian cancer. Years of complaining got me no where! It took a cyst (that I didn’t know about) rupturing and not being able to void to have an ultrasound ordered. From there, it moved fast! I’m fortunate enough to work for a large health care system, and got in with our head of our gyn/onc department 2 days after my ultrasound. Stat bloodwork and CT scan done that same day, surgery scheduled 6 days later. Just finished my frontline chemo June 7th, and was just declared NED last week! My only regret is that I wasn’t more persistent, and that I did things the proper way. I’m a nurse, and could’ve had any one of the doctors I work with order me more test, but I think I was just hoping it was menopause (I had a uterine ablation years ago, so no menstrual changes for me)....plus, I had very vague symptoms. Weight gain, hair loss, extreme fatigue...could have been several other issues, even though I knew OC was a potential, I blew it off, as cancer hardly runs in my family, and absolutely no female cancers!

I would definitely ask for a CA125 and an ultrasound (including transvaginal). Just keep in mind, the CA125 is elevated for several other things besides cancer. Also, not every women’s CA125 is elevated, even with cancer. Unfortunately, there is no one test to detect OC, just a handful of tests together, the only definitive way is through pathology, which means surgery. Best of luck!!

@dswiney, welcome to Connect. What a relief to get the news of no evidence of disease (NED), especially after such a long rough path to getting diagnosed. It's so easy to look back and say what one could've, should've done and outta have known better. I think ignoring vague symptoms is something many of us do. What is your follow-up schedule?

Thank you! I didn’t necessarily ignore my symptoms, but 3 separate practitioners weren’t concerned...
It is such a relief to be done!! I am going to have CA125 levels drawn every three months, starting in September, when I will be 3 months post chemo! I’ll do that for 2 years, then every 4 months for 2 years, then every 6 months for a year!

Hey!

In 2015 I was diagnosed with a rare form of ovarian cancer at 20 years old which resulted in the removal of the ovary, fallopian tube and surrounding lymph nodes, getting to that point was a fight though. I had similar symptoms with extremely irregular delayed periods, unexplained weight gain and back/abdominal pain. All I can say is you know yourself better than anyone else so keep demanding answers until you get one.

I fought for my gynea to send off my ultrasounds for a second opinion to an oncologist and once they saw the ultrasound I had surgery that week and it was confirmed cancer once removed.

Best of luck!

My goodness yes and yes again! I was first diagnosed in 2004, during a standard hysterectomy. Leading up to this I had 5 years of vomiting, unpredictable periods, and bowel issues. I saw multiple doctors of various specialties and had ultrasounds and scans that showed oddities without diagnosis; everyone felt it was diverticulosis until a fibroid was detected and they ordered hysterectomy. Nobody would run CA125 until I was in surgery.

Took chemo and went into remission until 2022. Symptoms started to return in 2016. My CA125 was slowly rising at a steady upward tick, but still considered normal. I was still accessing gynOnc at university cancer center (with an active ovarian cancer specialty and screening program) to report concerns and requesting PET scan which I had never had. PETs were not provided, only CT and medical team continued to reject the concerns of recurrence with diagnosis of IBS.

Fortunately I moved to AZ and new doctors were concerned with rising CA125 that had finally exceeded normal, to 50. Connected with Mayo where PET was immediately ordered to discover metastasis to multiple abdominal locations, and to diaphragm where I had been reporting pain.

This is not a silent cancer, I feel the women are the ones being silenced by standard practitioners and those not highly specialized and laser focused on ovarian cancer symptoms and treatments.

I’m glad you kept on them. We need to be advocating for ourselves. I was having sciatica pain so my GP scheduled an MRI so I could get injections. My MRI showed a mass on my left ovary. I’ve since had 2 more MRIs with contrast and an ultrasound which shows a complex cyst which contains protein and blood as well as multilocular. I’m confused by these descriptions but my GP sent me to a Gyn/Onc. He states my lesion is suspicious so I’m having surgery in 10 days to remove everything as well as a lymph node to be tested while I’m under anesthesia. I also show a small lesion on my right ovary as well as my Fallopian tube and fibroids in my uterus. This is definitely a trying time not to mention I live in SW Florida and just lost everything due to being flooded by hurricane Ian. I’m sorry for all the stories of heartache and stress but find this forum very helpful and comforting at the same time. Knowing you’re not alone in this process is very reassuring. Thank you for being here to guide and inform. I wish everyone good health and recovery

I hope whatever is going on will be found to be something minimal and easy to address. Dealing with this on top of those floods cannot be easy, I am so sorry.

I am glad you are seeing a gynOnc for this, specialties really seem to matter in our case. If they have not yet done CA125 and HE4 perhaps ask for one to have at least for your baseline.

Well said, you truly have to be your own advocate and be persistent no matter what. My chemo and surgery was almost a year ago this month and I am a. Zejula daily to help with the recurrence. I pray every day for all of us that is on the journey of this terrible disease. 🙏🏻