First symptoms

[Annab124]

Please can you share your experiences with me of the symptoms you had and diagnosis . Would be very appreciated . Wish everyone good health !

[Ruebacelle]

Hello. I was driving on the autoroute to Bordeaux to see friends when knife like pain spasms in my lower abdomen then continuing to lower back. Had to pull off the road. It wasn't a urinary tract infection nor a muscle blockage so I went to the gynecologist who did an ultrasound ordered blood test and an MRI. I had had intermittent pains for quite a while diagnosed as irritable bowel. The diagnosis came back OC stage 3c. That was August 2015.

[Annab124 in reply to Ruebacelle]

So sorry to hear that! How are you now ? Did anything show up in your bloods

[Ruebacelle in reply to Annab124]

Bloods had CA125 AT 178 and crp was elevated but in normal range. But the cancer marker had never been checked before I went to the gyneco.

[Catcher910]

The ONLY symptom I had pre-diagnosis was a mild yet persistent pain in the right lower quadrant of my abdomen. I mentioned it at my annual physical, and despite finding nothing on pelvic exam, my PHP ordered a CT scan. The scan showed multiple tumors in my pelvis and abdomen. I was referred to a GYN oncologist and had surgery soon after for removal of my uterus, cervix, Fallopian tubes, ovaries, appendix, omentum, and a small section of my transverse colon. Official diagnosis is Fallopian Tube Cancer. This was in 2018. I retired from my job and spent the next two years recovering from surgery, having an IV port placed, getting chemo, followed by joining the Athena Study. I got very ill on the meds in the study and had to be released from the study after about 9 months. It took about 2 months after being off the meds to recover from intractable nausea and inability to tolerate food. I lost 20-25 lbs. I am feeling much better now, and because of being in the study I get periodic labs and CT scans.

[Annab124 in reply to Catcher910]

Sending my love xxxx

[Here2Day in reply to Catcher910]

I was on the Athena Trial as well... made it almost the whole 25 months. Developed liver function issues in my last two months, and decided to end my participation. But I'm crediting it for still being NED (for now, at least). Even though we never know if we're getting the meds, I think my liver issues were due to the Nivolumab. How are you doing today? Do you know which med caused your reaction?

[Catcher910 in reply to Here2Day]

No, as they cannot tell you what meds you are on because it’s a blind study. I am doing pretty well, though CA-125 is slowly creeping up. I am 3 years out from diagnosis. Last doctor visit I was told “This is typically the time we see a recurrence.” Not very encouraging. Scheduled for more labs and another CT in early Oct. Day by day….

[Here2Day in reply to Catcher910]

I will keep good thoughts for you. BTW -- my doctor was willing to advocate to un-blind my record if my symptoms required knowing. Perhaps you could ask your doctor to do the same.

[Catcher910 in reply to Here2Day]

Thank you! At this point I’m not really sure it matters.

[tidewater19]

I had occasional sharp abdominal pain for months. Wrote it off to maybe just gastritis. Told the Dr at my normally scheduled appt. Also told Him I was feeling a fatigue not normal for me. I had noticed a gradual weight gain as well. Not belly but higher under my breasts. A couple of months later the pains were severe. One afternoon so bad I had to literally crawl to the door and tell My Husband I needed to go to the Hospital. A few scans and the Dr told Us I had a 28 cm "Mass". He called in the Gyno who took one look and referred Me to a Gyn Oncology Surgeon. Fortunately His Specialty is Ovarian Cancer. He was able to remove the entire tumor with no leakage. 1A That was 2 years ago. I did not need chemo. It is always at the back of my mind still. I think it always will be.

[Annab124 in reply to tidewater19]

Thank you for your reply , sending you love xx

[JanCan15 in reply to tidewater19]

I had stage 1a ovarian cancer too. Surgery and chemo. 5 years ago. Did you have lymph nodes taken out? Cancer free still.

[Here2Day in reply to tidewater19]

I wish I had advocated for myself the way you did. Your symptoms and initial reactions were exactly how I thought as well. But you followed up. I did not, and ended up at stage 3B. Thankfully, I too had a skilled gyn-onc, and am currently NED. Praying it continues... praying for all of us.

[polo2014]

I had no symptoms stall went in hospital in dec 20 with pneumonia was only in 3 days got letter to go for a ct scan end of January went on a Saturday then on the Monday doctor from hospital phoned me told me I had ovarian cancer and it had spread went for biopsy few weeks later then was told I had oc stage 4 and it has spread lungs spleen liver arm pits and I honestly never had a clue think I’m still in shock as I havnt cried had 5 chemo last 1 next week can’t have surgery so don’t know what else they will do as I’m to afraid to ask xxx

[Annab124 in reply to polo2014]

Sending you so much love ! I’m so sorry your going through this xxxx

[Here2Day in reply to polo2014]

Sending good thoughts to you... I can't wrap my brain around the failure to see this while you were in for your pneumonia. I'd be enraged.

[Hidden]

In 2016, I began having a lot of diarrhea, sometimes uncontrollable. My pcp said I had IBS...that was it, no exam, scans, meds. As time went on, I started feeling bloated and gained weight. Some days I could go nowhere and yet, other days I was just fine. However, it progressed to looking pregnant and could only eat a few bites of food. October, 2017, Awoke in the middle of night with sharp pain on left upper side, seemed to wrap around from front to back. Went to ER, had scan, showed tumor on colon. Admitted to hospital, tried to do colonoscopy but came to impasse. I had already had a partial hysterectomy years ago but still had ovaries and tubes. Had major surgery to remove tumor, part of colon, peritoneum, not sure what else. Was told I had Colon Cancer Stage IV and was being sent home (to die). Nothing they could do. A very astute oncologist persisted my case and discovered it was not Colon Cancer but Primary Peritoneal and could be treated. After recovering from surgery, went for chemo, carbo/taxol...had second surgery after completion and was declared NED at that time. That was 3 years and 4 months ago. Never was put on maintenance drugs. My numbers have gone up a tad and am being tested every month now instead of 3. I have good days and bad days, but mostly good, except for Covid preventing having much of a life. But I'm alive and plan on staying that way for awhile....I am 81 ! So, never give up. As someone else wrote, it is a roller coaster ride, but being positive and not stressing (easy to say) is all part of the battle. Best Wishes.

🥰🥰🥰🥰

[Annab124 in reply to Hidden]

Thank you for taking the time to reply ! I’m so glad that your well ❤️

[Here2Day in reply to Hidden]

Wow... thank goodness for good doctors who dig deeper and get results! Praying your numbers stay stable.

[Marigold-Jane]

My only real symptom was continual post-menopausal bleeding for just over 4 months. I was referred to Gynaecology, by my GP on 3 occasions, but after a hysterectomy, I was told that it was ‘nothing sinister’.However, my daughter, who was a trainee GP at the time, didn’t believe them, as she said that I didn’t seem myself. She took me back to my GP and insisted that I had CA125 blood test and a CT scan, which showed that I had Stage1c Ovarian cancer.

I sincerely hope that you don’t have the same scenario. You must insist that you have the relevant tests. With all good wishes.

[Marigold-Jane in reply to Marigold-Jane]

I had a hysteroscopy at that point, NOT a hysterectomy - auto changed the word!

[Here2Day]

Upper abdominal tightness, like being in a vice. Bloating. Also, random and occasional piercing pains in lower abdomen when trying to move my bowels. Extreme fatigue. Then ultimately excruciating back pain... Spent almost a year thinking it was related to some irritable bowel or colon issue. Dx'd with Stage 3B, September 2018. Currently NED, but have a followup scan and bloodwork in two weeks... fingers crossed.

[HappyGoLucky66]

Hi Anna, I had started a job cooking at a small cafe, when I would get severe fatigue and my feet hurt and lower back .I am 52 at the time and thought I was starting to go through meta pause had a large lump on my right lower gut , I have always had problems with constipation so just thinking that is what was going on . My husband felt my abdomen and said I should get checked out and I did and was told I have early stage 2 aggressive OV . Had hysterectomy and 6 rounds of chemo with one reoccurrence almost a year later I am on letrozole to keep it at bay , It’s a silent disease .