My Ovacome
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How did you know?

How did you first discover you had OC? Did you have any symptoms?

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I was 71 years old and still working as a receptionist part time and busy the rest of the time dashing around. Any abdominal twinges I thought oh if that happens again I will see the doctor. Then I started to feel bloated, went and asked the doctor to sort out my feeling about 4 months pregnant and the rest is history.

You can listen to your own body, it might be nothing and everybody is different but if you think something is not quite right check it out NOW and keep on if not satisfied, doctors are very busy people and have targets and budgets, scans are expensive as are other tests, don't let that stop doctors following up you case. You are important, be forceful and get taken seriously, you owe it to yourself.

Sorry for the rant but you read on here how some women loose valuable time by being fobbed off.

Read posts on here and you will learn what to ask for and will be taken seriously.

Best of luck talk to any of us any time it is a great forum.

Anthea

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Hi, Like Anther I'm 72 and was still working when I was diagnose 3 years ago, and thought I was putting on weight and one day at work when I tried to bend over, I felt sick so next day went to my GP she did the right thing by me in giving me a letter and told me to go straight to emergency at our local hospital and 2 weeks later I was on Chemo then surgery.

Now I know more about the symptoms lower backache being one I've had backache for years I did window displays and often came home with backache, this is one off the problems with ovarian cancer and by the time you have symptoms it can be high range.

In hindsight I should have listen to my body more,

So I think we need to be more aware of changes in our body and check it out.

I hope this has help you take care Lorraine xx

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Hi, I had spotting in between periods and urine leakage, I tossed that up from having 5 kids and i thought i was going through menapause, i shoud of went to my gynocoligist sooner, after a couple my best friend myself starting looking up lots of stuff and I went right to dr, my girlfriend said my hair was very frail or frizzy looking, I use to wonder if i had gone in in may if i would of been less then 3c dr, didnt think so at that point, it worked out good, we got our five kids settled in school and had robotic surgery, i have seen few commercials with the symptoms , they should have more, my oncoligist had all my sytems to the tee in his office, I had a ulta sound and ca125 that was at 80, when my girls turn 35 they will have 4 exams a year alternating ca125 internals and ulta sounds, Hope this was helpful

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Do you live in the UK as I am not aware of this screening for your daughters.

I have never been reassured by medics when I have asked about my daughter and granddaughter .

Take care x

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I was being screened yearly with ca125 and ultrasound and I was diagnosed at 3b. They have informed my daughters that sadly, there is no evidence that screening is effective. Xxx

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I live in the us, my ovarain is not in the genes but they will check on daughters 4 times a year, its very hard to test for ovarian. I also remembered another symtom , I was very very tired

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Their GP has documented

that I have OC. So I suppose that is quite positive along with knowledge of signs and symptoms x

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I also had heavy spotting. I had gone onto a new contraception pill which didn’t stop the heavy periods and spotting. I was constantly suffering from back pain. I was lucky GP referred me to have ultrasound. Caught very early 1A but was a clear cell so had to go through chemo for 6 treatments of carbon platinum following the hysterectomy. Which is not usually when caught so early. I was very lucky though have been advised I have higher probability it may return because of CCC.

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You will find most ladies think or blame OC symptoms are some other health issue to start - that's the main problem.

I am 71 now diagnosed at Stage 4 eighteen mo this ago. I rarely went to the GP and counted myself fit and well , going to live to a 100 category.

My symptoms which increased in severity over several weeks prior were gradual weight gain esp around the tummy - despite a reduced appetite, feeling full very quickly, frequency of urination, generally not feeling right, slow and unfit

I put it down to IBS type symptoms but never having had digestive or gut issues I went to my GP. Thankfully he knew to take the CA one two five Test , but actually didn't tell me that, just said he was taking blood to be analysed

Although he said I would get the results in about a week he rang me the next day as someone had rung him immediately from the lab to say the test showed a result of three thousand Plus , when the average range should be Thirty five Or below.

The rest is history. Within ten days I was in hospital, ascites drainage, further tests and en route to chemo land....

My advice is to explore this Ovacome site thoroughly, there is a huge amount of helpful information and ladies that will support you should you need.

Meanwhile get to your GP ASAP and ask for that CA protein Test

Good luck, let us know how you get on

Janet x

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My special person was told by her doctors it’s in your head, you suffered from a back injury for years she kept saying something doesn’t feel right but all we got was it’s in your head it’s ibs then finally a locum got the ball rolling 5 years later from her first visit to that doctors she was diagnosed with 3c, that was nearly 3 years ago since then she’s had 3 lines of treatment avastin debulking surgery and is now on Niraparib unfortunately depending on the person’s body it can either grow very quickly or very slowly it really depends on who has it xxx

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I had a tiny ( less than the size of a 5p) amount of blood spotting, on two occasions, and having been post menopausal for over ten years, thought I should get it investigated. This happened fairly rapidly, but by the time the results were back, the cancer was stage three! I was working full time, and had no other symptoms.

Jenny

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I was diagnosed when taken ill on holiday in Mauritius at age of 53 . Thought I had eaten something that had upset me , started to swell up and looked 7 months pregnant over 3 days . Needed an emergency laparoscopy and had 5 litres of fluid drained . Diagnosed stage 4 high grade when got back home to the Uk . In complete shock . Now a year and a half since diagnosis and NED and about to have my last Avastin on Tuesday .

Once I knew more about the symptoms had suffered from needing to urinate more frequently , the odd back ache which I always put down to teaching primary and bending over and sitting on small chairs and sometimes painful sex , which I though was due to early menopause issues .

Women don’t know enough about the symptoms , and they are often minor and only whisper to you so can be easily missed or attributed to other conditions . I considered myself fit and healthy and was walking steep hills, kayaking and eating well 4 days before the ascities.

If you have concerns go to your gp and ask for a CA125 test and internal ultrasound and ring the Ovacome helpline on Monday for more advice and info .

Best wishes love Kim x 💜

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My mum presented with severe bloating (she looked about 7 months pregnant), burping, indigestion. She went to the doctor several times and was eventually wrongly diagnosed with a hiatus hernia. She kept going back to the doctor because she lost a lot of weight very rapidly, but the doctor put it down to a thyroid problem. When she presented with a lump in her lower abdomen, the penny finally dropped with the doctor and she got the ca125 test done. Overall, it took a year from initial GP visit to diagnosis (stage 4)

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I am assuming you think you may have a medical issue? If so be proactive now, don’t wait love.

I was diagnosed when post menopausal and I had a pelvic bleed which only lasted around 24 hours but I knew I shouldn’t have it so I saw my doctor who put the whole diagnosis and treatment process in action, he was and still is fantastic and I owe him so much. I also had slight bloating but I had just put that down to my age (I was 59 at diagnosis), I also had occasional mild nausea and had had a cough for over 3 weeks and I was tired.

I had been to the doctors the previous week because of the cough and saw a different doctor (he is the lead doctor at the practice and manages the budget, this I believe influenced him not taking any action at that time!), he said I might need a chest X Ray for the cough, (this was due to me having a pulmonary embolism), he suggested the nausea may be something I’d eaten, (this was caused by the hypercalcaemia which in turn was caused by the cancer) and he suggested my slight ‘tummy’ was probably just my age and I might need to go see gynae if it didn’t go away 😬, at this point this ‘tummy’ was a rapidly growing grapefruit sized cyst on my left ovary that encased the tumour, this grew to basketball size and ruptured, fortunately it was while I was in surgery. If the second doctor and I hadn't both acted quickly who knows where I’d be now? Some doctors are more proactive than others and do listen to us.

If you have any symptoms at all go see your doctor and don’t be fobbed off, listen to your body you know it better than anybody else ever could and know when things aren’t right

My friend was fobbed off for nearly a year by her doctor as having IBS (a common misdiagnosis). She knew something was wrong and eventually got another opinion, she was diagnosed stage 4 and told she will more than likely recur. Often our symptoms are also put down to our age and/or our hormones, this really really does annoy me.

Time is important here, my second doctor acted really quickly, I had my debulking surgery 6 weeks after seeing him followed by 18 rounds of weekly chemo, I was stage 1c3 clear cell which has every chance of coming back but because it was caught early those risks are slightly reduced than if it had been caught later.

If you have any doubts at all about your health and if you think for any reason that you are unwell then go push for a check up. I truly hope you don’t have anything wrong with you but be body aware at all times, it will tell you if somethings not right.

I’m sorry to have rambled on for so long but, well, you did ask the question 🙂. Take care and be as well as you possibly can be and be self aware and if you need us we are here for you ❤️Xx Jane

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There are symptom trackers on both the Ovacome & Target Ovarian Cancer websites. These enable anyone with concerns to record not just the symptoms but also the frequency and persistancy (these are significant). They will also record the results so they can be taken to your GP and will help them to ensure the right actions are taken. I would strongly recommend using these.

Sx

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I was in my mid 40’s had just remarried. Working long hours and partying at the weekend. I had severe pain in my left side so in Jan 2012 went to doc. He said indigestion. I eventually changed doc surgery in the July and was sent for ultrasound. Referred under 2 week rule to gynae. Sept 2012 after surgery found out stage 1C

Symptoms were intermittent pain in left side and tiredness. So nothing obvious

LA

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It seems that there are varying symptoms and ages when OC pronounces itself. But the symptoms are on Ovacome and other sites.

If in any doubt also see your GP.

I had bloating, feeling full and tiredness for approx 18 months. Saw Doctor lots of times. I was given HRT for menopause. Buscpan for IBS. At one point they said appendicitis. I was becoming quite upset one day so made emergency app at Doctors and saw a locum. He did blood test. Got call late that night from my GP. CA125 was 4200. Obviously the surgery and treatment followed. I was 51 when diagnosed. Finished treatment last Xmas.

If in any doubt at all push for blood test.

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Just nausea and eventually couldn't eat.

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My wife had absolutely zero symptoms, was very active, weight was fine and then woke up in the middle of the night with an agonising stomach ache. Because a couple of years earlier my appendix had burst we actually thought she had the same. Went to A & E about 4-30 in the morning, got seen and she was diagnosed with a urine infection. Got antibiotics, a week later whilst pain wasn't so severe, it was still there. Saw doc, got different antibiotics....week later still pain.

Saw another doc who gave her an internal, said there was something there and the ball started rolling from that point.

We often looked back to the beginning but there just wasn't anything that we could see and think Aahh, that was it then....

Once diagnosed with stage 3c high grade serous, the gynae-surgeon and Onc thought that initially the cancer may have started 12-18 months previously..... So I guess planned CA125 tests each year would have probably caught it a bit earlier, whether the outcome would have changed, who knows. But I do believe that annual CA125 tests would pick up early symptoms for some......and whilst I know it isn't the be all and end all for everyone, I would be amazed if it didn't help a good percentage get diagnosed earlier.

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I was a bit constipated and my GP had referred me to a gastroenterologist but before the appointment, one Friday, I felt unnaturally tired. My abdomen bloated over that weekend so that by Monday I looked at least 7 months pregnant - and NHS then rushed towards my diagnosis and I had it by the end of that week = 3c.

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My symptoms seemed very innocent (If only!) and l felt no urgency to go to the doctors. I simply needed to go for a wee more frequently and urgently and could'nt hold it like I always could. Also when I did go to my GP (who was great and got the ball rolling straight away) she pointed out the mass in my abdomen when I was lying down. Don't know to this day how I didn't notice it; especially as I'm about 8 stone! Only in retrospect did I notice a couple more things. People had asked me about my weight loss (though my weight hadn't changed I was losing weight to the tumour which was very big). Also, I had become very tired and struggled to get up in the mornings. All in all nothing seemingly to worry about; another feature of this wretched insidious disease.

Sincerely hope you are well.x

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P.S. Nearly 30 years ago now. I know; I have been incredible lucky (so far!).

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Hi, It was on my 70th birthday & we had booked lunch at quite an expensive French restaurant. So having arrived at the restaurant I felt as if I had wet myself,so quickly went to the ladies only to find a watery discharge so used lots of toilet roll to pad myself out & went back to the table. I was so worried as the chairs had light fabric seats but fortunately all was ok.The following day I went to see my GP & she just said not to worry & so really nothing was done. Some months later we moved & after being here for a few months I had some spotting so went to the GP surgery, saw the receptionist who advised seeing the senior nurse. I explained the situation & said that I was worried & that I was wearing a pad all the time just as a precaution. Anyway she gave me a pessary & looked at me as if it was no problem & I should accept wearing a pad. As you can imagine I was upset over this & after a week I did see a GP,who gave me an internal examination & then said did I realise that my womb was tilted. Well as it happens I did know as it had been like it for years with no problem. Eventually she said that she would refer me to the hospital. The rest is history & I was diagnosed with Grade 3 serous . I have thought so,so many times that if the first GP had sent me for investigation then it would have saved having chemo etc.

My thoughts on this are that GP's need more information regarding this disease, although I fully understand that they cannot know everything about all illnesses. xx

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I was diagnosed at 65 through A&E had been going to GP for months with stomach pains, and reflux. Kept being told it was a urine infection . Was kept in hospital had scans was told large tumour OC . Had surgery then chemo. I should have pushed more.

Dee

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Weight loss. Frequently going to the loo, loss of appetite, abdominal bloating and back pain were my symptoms back in April 2012....I looked up symptoms on Google and alarm bells rang..I then went to my GP and asked for a Ca125 blood test which came back slightly elevated at 39...I then asked for a referral straight away..I was sent for an MRI scan which showed a large ovarian cyst, but nothing cancerous... By this time I looked nine months pregnant so they operated and took my ovaries having previously having had a hysterectomy... Weeks later had an appointment to be Discharged... Only then was I told that the histology results had confirmed OC stage 1A... I had Six rounds of carboplatin as a precaution... I was Discharged from the oncology unit last July and will have a yearly Ca125 from my GP... I'm so very thankful that I listened to my own instincts and sought help straight away... The advice I would give to anyone is,, please do not hesitate in seeking medical help

Luanna x

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Had no symptoms except hair loss, so thought it was menopause. No bleeding, no pain, no ascites. Had a CA-125 test by my GP because I lost all my breast oncologists on my insurance plan when the ACA kicked in and the CA-125 is the only cancer marker she is allowed to give. The CA-125 was higher than normal, but my GP forgot to do the follow-up test in 3 months, I remembered about 8 months later and had it done again, it had tripled. CT scans only showed a lesion on my uterus and nothing else even though the pathology report said every reproductive organ had turned to indistinguishable mush and cancer had spread all over the abdominal cavity.

I was 55 and in good shape, a runner and hiker. I got a gyn-onc who kept saying it was early stage and all I needed was a simple hysterectomy with robotic surgery. I woke up from surgery 7 hrs. later with a radical hysterectomy/debulking with ablation on many other organs and diagnosed as Stage IVb.

Continue to have bad luck with oncologists giving me optimistic predictions which are pie-in-the-sky analysis--now my recurrence nodules/lesions seemed to have shrunk/disappeared only to have a new cancer develop that's chemo-resistant. Looking at clinical trials for Mirvetuximab Soravtansine.

Still look outwardly healthy and jog 3 miles daily but feel hopeless as cancer keeps popping up again and again.

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I had just turned 50. I had been complaining for 5 years that I hadn't felt good, had horrible acid reflux and bloating but not one doctor checked outside the box for me. All their blood work came back normal and my gyno at the time told me I needed to join weight watchers! No family history of oc in my family so no reason to question cancer. This month I am a 5 year fighter/ survivor still battling the beast but surviving!

That's why they say ovarian cancer whispers, it's good to always know and listen to your body!

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I was a very healthy 68 year old when I was diagnosed. My main symptom was shortness of breath on exertion. I also had a feeling of epigastric fullness when laying down. There was also only one occasion of spotting very light colored blood. I saw my GP, and she said I must have bronchitis, and ordered an inhaler.......which didn't help at all. Long story short, I had 2 liters of fluid in my pleura (the space between the lung and lining of the lung). I'm a retired RN, and I had listened to my lung sounds and even told 2 doctors that I didn't think I was moving air on the right lung base. They said that the air was moving fine........wrong! First time I ever got an apology from a doctor! The large pleural effusion was on the right. That was in Sept. of 2014. I had the surgery, chemo then a long (27 month) remission. I recurred this past summer, and have now recurred again in Dec. Not unusual since I was diagnosed at stage 4a. This disease is so insidious. Listen to your body and be your own advocate. Doctors are human, too. Sometimes they need a push.

I'm glad you've found this forum. The ladies here are lovely, and very supportive. I'm wishing you the very best. Keep us posted. Sending hugs........Judyved

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I was only 42, and felt fit and well ironically. My symptoms were subtle, it wasn't until I started with urinary leakage that I went to the GP who luckily was very vigilant and sent me for a scan and blood test straight away. On reflection, I had some of the symptoms for a short while but because they were so vague I didn't think anything of them (constipation, intermittent bloating after eating). I'm guessing you have some concerns otherwise wouldn't have posted your question on here. I hope all the advice you have had off everyone is useful and you can make an informed decision what is best. If you are concerned though, don't delay seeing your GP, the sooner you are seen the better. Best wishes, Jo xx

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Here is a link to all of my signs and my struggle to get my dr to listen to me. We are all hoping you do not have this disease, but if you do have to join our community we hope we have equipped you with enough knowledge to listen to your body and don't take no for an answer until you get the answers / help you need.

reflectionsofmyworld.com/sh...

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Rppizio I remember a while back you did a survey concerning thyroid cancer, RAI and OC. Were there any results from it? Thanks

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Yes there was a good outcome on this. My Endocronolgist took the results to a national convention and shared our results with other Doctors. Several including her, will now be requiring an annual internal ultrasound for their patients that have had the Radio Active Iodine(RAI), In hopes of being able to identify it early and potentially save some lives. The computer that the survey was on was damaged in Hurricane Harvey. I will try to see if I can request it from my Dr. Hopefully she still has it.

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rppizio...that would be fantastic if you can share the survey...it would be really sad if the info was lost in Harvey. I have had RAI....and am now suspecting something is not quite right with my female parts. I have all the OC symptoms...and a cyst that is not quite suspicious, but is also "unknown". My RAI was Jan 2017....things started unraveling April 2017. I am still pushing for answers, but the fight gets tiring. Thank you for your reply

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You should be able to ask your Endo dr to request the ultra sound to make sure. I do seem to remember that it was on average about 2 or more years before the cancer was detected. But my Endo said aprox 5% of thyroid cancer/ RAI treatment get OC. Which I didnt' think was that high but she said yes. In her book it was too high.

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Those are interesting statistics...and I agree, OC at any increase is too much. My mom and her sister had uterine cancer (my mom also had thyroid cancer) and my paternal aunt and grandmother withe Breast cancer, so I am probably alittle hyper sensitive to symptoms (especially after the THYCA). Thank you for your response.

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I had no symptoms whatsoever. I had been to a slimming club and lost 2 stone very slowly over 7 months. When I lie in bed I put my elbows on the bed and see how close my finger are to touching to determine if I need to loose weight ( I’ve been overweight all my life ). When my fingers interlocked I though hey the diet it’s working! Then I felt a lump on my left side. I have irritable bowel and diverticulitis so thought it was just a bung up in my bowels. After a couple of week I went to the drs with a sore knee, when I was on the couch I told her I could feel a lump in my stomach. She said you can’t feel lumps in your stomach then spent over five minutes manipulating the lump. I was sent for blood tests and a week later I got the results.

My Dr told me the blood tests flagged up OC I was devastated. She said I must be one of the most unlucky people she’s met; as 35 yrs ago I had my left ovary removed and 20 yrs ago I’d had a hysterectomy and to get OC I the ovary that was left was such bad luck x

I had to go home and tell my husband which was the hardest thing I’ve ever done. We cried together but he said we’ll fight this.

I had an ultrasound at our local hospital and had a phone call from them to say its OC contained in the ovary, it will be taken out by keyhole surgery but I had been referred to Addenbrooks. I went there the next week and the surgeon asked what I knew so I told him about the keyhole. He said no it will be from rib cage to the bottom of my stomach they would take everything out that I don’t need ( I now know it is debulking) then chemo afterwards x All I can say is Addenbrooks have blxxdy great keys if that’s keyhole. X

He said there was a 13cm mass attached to my ovary, which had moved to the left side because there wasn’t a womb there to stop it.

Though I had no symptoms; if I hadn’t lost the weight, I dread to think what would have happened to me in the future.

I wish you all the best xx

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