how did you get diagnosed?: I’m very interested... - My Ovacome

My Ovacome

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how did you get diagnosed?

Lovelybunnies profile image
29 Replies

I’m very interested in hearing everyone’s stories! If you want to share I want to listen ! ❤️☕️

29 Replies
Saintgermain profile image
Saintgermain

Hi Lovelybunnies,

I became very constipated nothing worked I asked my Primary for a med she responded I’m ordering a pelvic trans-vaginal Ultrasound & CA125 they found a mass on my ovary, CA125 was 4300. That was my only symptom thank God she was insightful. I’m 3B NED 1 year next week.

Lovelybunnies profile image
Lovelybunnies in reply to Saintgermain

thank you! Your very inspiring and I’m so happy your on here reaching out to others !

I have a follow up appointment they found a complex cyst in my ovaries one in each and I have been having bloating lightheaded and soreness like a heartburnish feeling I have been worried waiting for this follow up but I only have gotten an ultrasound and pregnancy test so far. They said a complex cyst is either a solid filled meaning mass or blood filled hemorrhagic so we shall see I am hoping for the best but expecting the worst.

Saintgermain profile image
Saintgermain in reply to Lovelybunnies

I’m in the states and this site is my go-to the ladies on here are amazing and each Survivors journey is different. I am praying for you that it won’t be the worse case scenario. Try not to over read articles on the web heaven knows I did please let us know how your appointment goes. Hugs from Chicago

Lovelybunnies profile image
Lovelybunnies in reply to Saintgermain

thank you! I’m in upstate ny! I am diagnosed with fibromyalgia, pcos, and Reynalds I appreciate the support 💕

ZenaJ profile image
ZenaJ in reply to Saintgermain

Hi, I hope you read my private message. x

Riverflo profile image
Riverflo

I hope you have positive news soon. I had what felt like constant, dull period pain and then as the weeks passed with my GP ruling out other things I could hardly breathe. This transpired to be 1.8 litres of fluid packed around the lungs.

Best wishes to you xx

Jayniiee profile image
Jayniiee

Hi lovelybunnies. Sending you positive vibes that you will get a good outcome.

I had abdomenal pain one day like I'd never had before and which I ignored thinking it was stress. It got better but grumbled on and off for weeks and then eventually i started to get a pulling pain when i walked and had pain at night if I slept on either side. I had had a sharp pain on deep inspiration, or yawning for months and a discomfort under my ribs by my diaphragm and I ignored this thinking it was an msk issue.

Eventually i found a mass by my belly button and my gp agreed and was urgently referred and now after treatment I'm now ned.

Jennifer-Lee profile image
Jennifer-Lee

My ovarian cyst was picked up incidentally. Went for a pelvic scan which my G.P. had diagnosed as a hernia. Certainly not a hernia, but a very small ovarian cyst found in 2015. It was monitored for about a year. Normal CA 125 levels and cyst stable. So no further follow ups. No more symptoms. Then again in 2022 when my uroligist found microscopic blood in my urine. She sent me for various tests I had a cystoscopy and was investigated for bladder cancer, nothing. CEA levels raised so was investigated for bowel cancer. Had a CT colonoscopy and nothing. I am fortunate to live in an area of London with three excellent teaching hospital in my borough. So I was bouncing around between the three hospitals having various tests. All three hospitals found the cyst again, which had grown and by now had nodules on it. Decision. Bilateral Salpingo-Oophorectomy. The gyaneacological oncologist told me on the 3rd August 2022 that it would be best to have the op. On the 24th September went in for micro surgery and job done!! The microscopic blood incidentally is a result of atrophy. Am 75 years old and menopause was 25 years ago. Love and best wishes to all of you xxx

Morini profile image
Morini

I thought I was suffering from weight gain and reduced fitness over lockdown but it all seemed exvessive and not right. GP identified ascites at first visit and referred me for a scan which identified a mass on my ovaries. Actually identifying that as cancer took couple of months and eventually needed a biopsy by laparoscopy though.

Georgiatec profile image
Georgiatec

I was on holiday and found a pea sized lump in my groin. When I returned home, I saw the doctor. I was then put on a 2 week pathway of tests under the NHS. This included blood tests, then ultra sound, and finally biopsy.

After 2 weeks my Ovarian Cancer was confirmed at stage 4.

Unfortunately I was told there was nothing they could do! I then contacted The Christie in Manchester, the rest is history. It’s been 4 years now and feel incredibly lucky to be here. Sometimes professionals do get your future wrong.

Best wishes

Lobster2 profile image
Lobster2 in reply to Georgiatec

Praise God for 4 years when you were initially told there was nothing that could be done!

Tezzaa66 profile image
Tezzaa66

Had a hernia that popped out and had emergency surgery where they found suspicious activity and sent biopsy to lab later diagnosed with 3c serous peritoneal cancer within 2 weeks I started chemo

6 chemo debulking surgery 2 chemo then ned for a year but it came back and have just finished 6 more rounds of chemo and waiting for scan results

Good luck hope its a happy outcome xx

Mysticmeg123 profile image
Mysticmeg123

Hi

Mine was found after I could feel a lump in my tummy and had the urge to pee constantly. Dr prescribed antibiotics for a urine infection which didnt help. After much badgering ( all during Covid) they finally agreed to a face to face appointment and a physical examination. Had a scan and bloods to find raised CA125 levels. The surgeon who operated on my told me that I was lucky. The reason I had any symptoms was because I had a hernia repair around 10 years ago and it has slipped and wrapped around my bowel. That was the lump I could feel. If I hadn't had these symptoms I dread to think where I would be.

ZenaJ profile image
ZenaJ

Mine was pure luck. I was feeling unwell with a high temperature and pains in my leg and couldn't get an appointment so as I was having difficulty in walking I went to A&E where I was given a scan. After seeing a gynaecologist and further scans, I was told, after a three day stay in hospital, that I had OC. It took several months until my surgery and although I'd been told I had a secondary cancer in my spine, no-one would confirm OC cancer until I was cut open and my tumour was sent to the lab. I asked how I could have a secondary cancer if I didn't have a primary and the secondary was re-checked and was confirmed as arthritis thankfully. After surgery all was confirmed as stage 3C. That was on 21st June in A&E and September for the surgery. It's the worry during the waiting that's horrible too.

Lovelybunnies profile image
Lovelybunnies in reply to ZenaJ

it most certainly is ! I honestly don’t think doctors look into situations as well as they should either and that scares me too . I know something doesn’t feel right and isn’t okay but we shall see what they intend on doing.

ZenaJ profile image
ZenaJ in reply to Lovelybunnies

I know what you mean about the bloated feeling. I only have to have a glass of water and my tummy swells to look like I'm six months pregnant. It's very uncomfortable. I don't think it's going to go now though. One of the pleasures of getting older maybe. xx

Lovelybunnies profile image
Lovelybunnies

what strong amazing stories !

You are all so strong! Thank you I am in hopes it will be good results but with the constant stomach ach I have and bloated feeling I get really worried. My belly constantly feels like that period feeling even after period and I think maybe I’m dehydrated or maybe My pants are too tight but it doesn’t stop or help. Im going to request a ca test I know some doctors don’t agree or believe in them as being a marker for some reason. Thank you for all of your support as well I honestly just didn’t know who to turn to because no one understands the problem with getting diagnosed and how hard it can be and I want to make sure I advocate for myself best I can 💕☕️ Love & health to you all and god bless

CastrolColours profile image
CastrolColours

I am in the UK, I was due a smear test which I put off for a few months,

when I eventually got round to doing it I happened to mention that I had a bit of fat/swelling/ A bit rounder than I used to be area in my lower abdomen. oh they said we can’t look at outside we only look at in side.

I immediately got appointment with the Doctor who said that’s not right and said to me for an ultrasound,

A few weeks later during the ultrasound she said that’s not right there is abnormality on your ovary a large cyst about the size of a small melon.

from there I went to a CT scan who confirmed it was rather large. (if I can I will enclose a pic, anything in the red line is the cyst.

more or less immediately I was in hospital having it out and I was then told it was stage 3 cancer. This was back in 2018 and I have had three recurrences and do today for another scan to see how things are.

I guess the moral of my story is to tell people if they are putting off their cervical smear to get it done, if it wasn’t for that I would never have found out I had the cancer.

Before and after removal of cancer lump
Lovelybunnies profile image
Lovelybunnies in reply to CastrolColours

thoughts and prayers for you today ❤️☕️ Let us know how it goes !

Barlow1951 profile image
Barlow1951

My symptoms were very vague and in retrospect it’s amazing that my GP responded so quickly. During 2015 several friends kept telling me that I was losing weight but I dismissed what they were saying until one day I weighed myself at a friend’s house and found I had actually lost over a stone without realising it.

When I told the GP about this unintentional weight loss, he put 2 fingers on my tummy and I saw his face change as he immediately said he would refer me for an urgent ultrasound. That scan showed a mass the size of a large grapefruit, which grew to a large melon by the time I had surgery 2 months later. My only other symptom was fatigue at weekends, which I attributed to being too busy during the week, with an active social life and involvement in 3 different volunteering roles.

I was diagnosed as stage 3C high grade serous ovarian carcinoma, but following chemo remain NED to this day and am very grateful to be alive.

As you so rightly say lovelybunnies, each of us has a unique pathway to diagnosis, which I suppose shows how difficult it can be for those trying to discover the causes of such a wide spectrum of symptoms!

purfekt10 profile image
purfekt10

I had cancer of the appendix in Sept. 2017. My family doctor wanted to run more tests because she had a feeling something was not right. She had me get a CA 125 test and it suggested cancer. She had me get another CA 125 test six weeks later and the number doubled, so she referred me to a gynecological oncologist who diagnosed primary peritoneal cancer four months after cancer of the appendix and the two cancers are not related!

Lovelybunnies profile image
Lovelybunnies in reply to purfekt10

that is so wild ! And here you are getting and being supportive to others ! Inspiring!

kristinaapril profile image
kristinaapril

My mom died of OVCA in May 2019. Went for yearly and asked gynecologist for a yearly ca125 - she also encouraged me to get an ultrasound too as it’s a better indicator than just the blood test. Physical Pelvic exam was fine and I had no symptoms. Ultrasound found a 5 cm hypodense cyst and ca125 came back over 800 initial pathology indicated Borderline serous.

Kris x

Zelam profile image
Zelam

I had constant bleeding ( sometimes red sometimes clear) for 7 months before diagnosis. I want to get that out there as it's not a common symptom. My gp kept putting it down to my coil and my age before a second ultrasound ( this time internal due to a not full bladder) picked up something suspicious. I had a tumour on each ovary 4 and 6 cm. Extremely lucky to be stage 1c

Balletchick12 profile image
Balletchick12 in reply to Zelam

I also had constant bleeding for 3 months before diagnosis but in hindsight I had been experiencing some urinary incontinence and put both down to peri menopausal symptoms. Very lucky that GP referred me for an ultrasound and bloodwork. My CA125 was over 9,000 and after CT Scan and biopsy was diagnosed as stage 3C. Have had 3 rounds of chemo so far and CA125 is down to 1,600 with no bleeding. I was told the bleeding was due to my tumour (around 9cm) was pressing on my womb.

tealblue1 profile image
tealblue1

I had felt a lump in my abdomen I called the GP but they only do phone appts. I was sent for bloods but had to wait 5 weeks to get a blood appt such was the situation in my area. these came back ok, but I had to keep pestering because I knew something was not right. Eventually got a face to face and then things quickened significantly. I was sent for an ultrasound, and I knew it was bad when he said his report would be on the doctor's desk first thing. Turned out I had a tumor on the ovary measuring 30 cm. By this time, I looked about six months pregnant and felt heavy. I have just had a radical hysterectomy and am in recovery at the moment. I was lucky though as it looks like stage 1.

SopSinger profile image
SopSinger

I started with fatigue, then irritable bladder, both of which I attributed to menopause (I was 48). Then I had a couple of strange episodes of severe pain (one I attributed to food poisoning, the second to menstrual pain). I started to have low dragging abdominal pain and then could feel a lump. That was on a Friday and I decided to go to my GP on the Monday, but I collapsed with a third, much more severe episode of pain on the Sunday and was admitted as an emergency. They did blood tests and urine samples when I was admitted, then ultrasound on the Monday, CT on Wednesday and diagnosed on Thursday. That was April 2006, and I've been cancer free since completing chemo in November 2006.

Django123 profile image
Django123

My diagnosis was a lucky accident. I had a kidney stone, and my doctor ordered a CT scan. He called me that evening to tell me that I had two large ovarian masses, about the size of grapefruits. Within three weeks I had surgery to remove all my reproductive organs plus omentum and lymph nodes. One tumor had borderline cells, but they hadn't spread outside the ovary. I feel very fortunate.

Looking back, I realized that I had been having many symptoms for a few years, but I thought they were all from separate things. I had sciatic nerve pain, bloating, indigestion, reflux, heart palpitations and shortness of breath. My doctor ordered x-rays and other tests, even a cardiac workup, but couldn't find anything wrong. The last several months I was constantly fatigued, and I kept having panic attacks where I felt I couldn't breathe. I thought it was all because I was getting older and fatter. After my surgery, all of these problems vanished.

Best wishes for your recovery and future treatment. --Lani

Balletchick12 profile image
Balletchick12 in reply to Django123

I think that hindsight is a word we all use x

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