late-diagnoses

[candyapplegrey]

interested-to-see-how-many-of-us-have-been-diagnosed-late.-not-sure-where-to-go-for-statistics.--will-awareness-month-make-a-difference.--mad-that-testicular-cancer-and-prostate-cancer-always-on-daytime-tv.-let's-put-this-in-perspective.-their-survival-rates-are-95-per-cent-and-83-per-cent,-respectively.-i-feel-that-women's-cancers,-their-symptoms,--are-simply-not-taken-seriously.--sorry,-just-feeling-like-campaigning.--c--xx

[Katmal-UK]

Hi I was diagnosed stage 3B advanced. However, having said that I never had any symptoms and this was picked up by a fluke really. I have had two recurrences and again not one symptom. In fact I have never had any symptoms at all. I think the issue is those that are diagnosed 'late' is because OC lives up to it's name of the silent killer. My mum was also Stage 3 and again no symptoms. xx Kathy xx

[RainbowC]

I was diagnosed at stage 4 - but on my first visit to my GP with symptoms. Well, one symptom - huge bloating which had developed over 2 weeks. Even reading the ‘symptoms of ovarian cancer’ poster in the waiting room right after my diagnosis there was nothing there which would have rung alarm bells for me.

It’s safe to say all my colleagues are rather more aware of ovarian cancer now than they were 18 months ago...!

[suzannebirch]

Exactly the same. No symtoms then huge bloating and a stage 4 diagnosis. No awareness about OV at all and i had breast cancer 10 yrs ago. I share Ovacome posts regularly and urge friends to seek advice if they have any feelings of being uneell - not just cancer related - because people more reluctant due to covid and not ot getting F2F with your GP.

[N-A-58]

I think the issue with OC is that it generally causes symptoms late on. Some cancer, I’m not sure what ones exactly, cause lumps etc, so can be investigated and caught at an early stage. So the main thing here is to find a screening program for OC. I read once that they are thinking of putting a camera into the cervix and then up into the tubes to look for cancer.

[Neona]

I had been going to my GP for 2 years and had seen 2 specialists before I was diagnosed at stage 3 c clear cell. I was mis-diagnosed with polymyalgia and put on steroids which then covered up the symptoms. A simple scan would have caught it early but I didn’t qualify for one despite being seriously anaemic. I had severe inflammation which caused strange neurological problems including difficulty walking. My GP was very good and had done the ca 125 test but it came back at 16 . She thought I was too young to have polymyalgia so sent me to specialists who both thought it was polymyalgia.

[Mumsie13]

I'm not sure there are any meaningful statistics, at least I have never come across them. I was diagnosed with 3C OC after debulking surgery. Before that I had very occasional symptoms that could have easily been ascribed to something else - rang no alarm bells, OC never even occurred to me. Five years prior to diagnosis I had investigations for ovarian cysts and vaginal bleeding. I had CA125 (normal), Ultra Sound and CT scan, all ok. After 9 months with Gynae consultant I was discharged as no evidence of cancer was found. There were still ovarian cysts there but no follow-up monitoring was suggested. If it hadn't been for the fact that I started experiencing painful sex (tmi?) I might have not seen my GP as soon as I did. I have to say my GP was marvellous. She moved like speedy Gonzales and I had all my scans and tests within two weeks and an emergency appointment with my Gynae oncologist.

[Valeriia]

I was also diagnosed at 3C stage, after 2 months of gastric misdiagnosis “treatment” that did not help

[Irisisme]

Yep, stage 3c.

I did go to my GP because of constipation and she did refer me as urgent but to a gastroenterologist. 5 days later I had ascites. Ultra sound found “nothing sinister” but they were looking through fluid at my liver. A CT scan revealed the horrible truth. I was only spared stage 4 because the fluid around my lungs had no cancer cells, there was a melon sized mass plus lesions on everything (including liver) in my abdomen, except bladder and kidneys.

Now just started 3rd line chemo 5 years later.

Still hopeful and planning for the future.

Iris 👍😁

[Doglover1410]

I have IBS and had 2 weeks of mildly worse IBS that my usual dealing methods weren’t helping with. I had a day off to take my Dad to a hospital appointment and I thought ‘I’ll just see if the doctor can give me something stronger’ Ultrasound the following week, and the week after that diagnosed at 3C!!

I was aware of the symptoms (had breast 12 years previously) but the symptoms were my usual IBS symptoms....I often wonder if it WAS IBS? x

[bamboo89]

The reason Ovarian doesn't get so much publicity as prostate, testicular and breast (because the latter gets a huge amount of attention) is because there's no screening or test for it that actually works. For instance, Cervical cancer is present in the public consciousness because there is a test, a smear, which they're always encouraging women to go for... but for ovarian, there's nothing. They've been trying for years to work out how to diagnose it early, but so far, no luck. If there was a test for it, it'd be all over the news, with constant reminders to get checked, like there are for breast cancer and cervical.

I did read recently that there might be a blood test coming that can successfully detect it, along with about 4 or 5 other cancers... we can only hope. Regardless, given the attention to cervical and breast cancer, I don't think we can say ovarian is ignored because it's a woman's cancer...rather it's because it's impossible to detect until late stage when the symptoms become obvious.

Miriam

[Ruebacelle]

I hear you. Ovarian because rare never gets all the trials and attention breast cancer does then years after everyone else they decide to try a proven protocol on us ...annoying or we don't qualify because not lst line but whose fault is that. France doesn't spend on research the way the usa does so we get new treatments way later

[Ruebacelle]

I was diagnosed with IBS. My internist a woman breast cancer survivor never did a pelvic or recommended an ultrasound which would easily have found the mass. Went to my obgyn w screaming pain lower belly and back she did an ultrasound hence CA124 and MRI. Stage 3 COC I went back to my internist and chewed her out for not being clinically competent and changed docs. An ultrasound should be routine along w pap smears. The chair of obgyn preaches this as well as recommending removal of ovaries after no longer wanting children precisely because of routine late diagnoses

[Cumbrianlass5]

The short answer is yes. For several years I had pain with sexual penetration but every time I mentioned it to doc or nurse practitioner they blamed the menopause and recommended lubrication. I had no other symptoms and it was only discovered when I went to GP with a kidney stone, which I eventually passed. After high C125, ultrasound and ct scan, the hospital gynaecology department said my "ovaries are enlarged but there are no areas of concern". Then I had to have 12 weeks of tests, including endoscopy and colonoscopy with biopsies. Eventually had ct guided biopsies on tumours in lymph nodes near heart and aorta which showed I had stage 4 high grade ovarian cancer! Have had 18 weeks of carbo/taxol but it is inoperable. So, yes, diagnosis was certainly delayed!

[delia2]

I spent over a year trying to get a pain in my lower left pelvis diagnosed. My gp dismissed it. I was due for a colonoscopy so I hoped that would give me an answer but it kept getting canceled because of a shortage of GIs where I lived. Finally I saw a gynecologist who ordered an ultrasound and found the mass. I lived in a rural area and would have had to drive three hours to a gyn oncologist so I moved temporarily near to my daughter who is a doctor and she got me rushed through further testing and in with a good gyn onc who did my surgery three weeks from my CT scan. Stage 3b HGS.

[vipervictoria]

Hi,

I was diagnosed with OC stage 3c (high grade serous) in August 2009. Prior to that I had 2 MRIs and 1 ultrasound scan, during which a large 5cm cyst was found.

Then the CA125 test wasn't common in general practice. I was more worried about being blue lighted to A&E with a suspected heart attack.

But, despite a few scares along the way, 11 years later - 10 years clear from the initial diagnosis, I am still alive. I am lucky, because via my husband's job, I had PHI, so after the initial op and chemo, my husband took me to Harley Street.

That gave me hope, and that is what I needed - what we all need - after a diagnosis of OC. I did take legal action, because the MRIs were both private, under our PHI. But the professor concerned slithered out of it like a snake.

The poor radiographer was blamed, it became a sort of game of ping pong ball and the court set a deadline for settlement. I got away with £80,000, the legal fees were paid by the NHS, probably at least ten times that. I got a letter of apology signed by a legal person in the legal department of the NHS. I should have had at least £250,000. If not a lot more, because of my work.

However, I am alive, and I prefer it that way.

I wish you all luck, hope and strength as you figure your way through this horrible disease.

Vxxx

[candyapplegrey in reply to vipervictoria]

Thanks for this. Yes. My GP at the time was lazy, should have referred me in 2017 but didn't bother. By the time I presented with the same symptoms in 2020, the cancer had metastasized from one ovary to the other, spread throughout the womb. Glad that you persisted and got something. Well done! I have a friend who's in a legal battle at the moment. Not to do with OC but she's close to quitting. I will let her know about you.

[Pianoplayer731021]

I was diagnosed at stage 4. I didn’t feel well for months, but they didn’t find anything on the ultrasound and bladder checks. I finally was diagnosed with a ct scan and blood test. I’ve had chemo, surgery and then more chemo. Iam on niraparib since last July. The dose was lowered because of blood counts. Yes, this cancer is a silent thing , because we don’t feel symptoms until it is quite advanced. It is a sad situation for many women. Donna

[Artgreen]

Yes : 3a for me after two years of UTIs, colonoscopy clear so assumed IBS. Was refused CA125 test to rule out OC.

Bloating, frequent need to pee and abdominal pain were all clues as was eating less but feeling full quickly. Low Grade found after palpating stomach then ultrasound.

[Cat-33]

I have actually been wanting someone to ask this question for awhile, so thank you! Diagnosed in 2016 my initial symptom started on my tongue, a yellow coating which I later found out was related to the shutting down of the left kidney. After going to seven doctors of various practices and experiencing fullness (though eating little), constipation and a bubbling sensation just below my navel I had an enlarged lymph node the size of a silver dollar on the left lower abdomen...which should have been a huge clue. However, it was treated with antibiotics and I was told it reduced and thus could not be cancer! I did have one day of spotting and my gyn did an ultra sound - no results. Then four months later my stomach blew up with ascites and finally had a CT, MRI and diagnosis of 3C, HGS. The only pain I ever experienced was related to treatment drugs. I just finished a year of Doxil treatment for my second recurrence. I now live with two metal ureteral stents that are exchanged once a year, ONE reduced function kidney (the other has shut down completely), two incisional hernias and the determination to live every day fully with joy and appreciation! Wishing all the best to everyone on this site! Never give up hope...train your mind to stay positive and find joy in every aspect of life. Become a gardener and you will experience miracles every day and believe in them as I do.

[candyapplegrey in reply to Cat-33]

You're an inspiration to me! Thanks for your response.

[Cat-33]

So happy that you found my reply useful! We are all in this together although we each have our individual story that can be helpful to others. Wishing all the best to everyone!