Were you aware of ovarian cancer before you (or yo... - OvaCare

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Were you aware of ovarian cancer before you (or your friend/family member) were diagnosed with it? (Pls say more in a comment)

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37 Replies
bchristina profile image
bchristina

If i knew then what i know now, i would have been much more vigilant. No awareness like there is with breast, prostate etc

Daisy28 profile image
Daisy28

I agree , There is no awareness about this really or testing like their is with Breast Cancer. I am only aware now due to my mother been diagonsed.

alanadan profile image
alanadan

I never came across it until my mam was diagnosed with it in 2010, unfortunately after a long battle my mam passed away on the 17th october 2012. I really wish it had of highlighted more like, breast cancer etc... All we can do now is set the wheels in motion so that more women can be tested or checked out and cought early.

bellebride profile image
bellebride

I was aware of it but not of the symptoms - we definitely need more awareness - my nana was diagnosed at the beginning of December 2012 and unfortunately it was too late and she passed away on the 15th January 2013

alanadan profile image
alanadan in reply tobellebride

Hi there. I just read your message and my heart went out to you. I lost my beautiful mam in October 2012, nearly 5 months ago. I know the pain you are feeling. Just to maybe help a little, I believe that our loved ones are still with us after they have passed on. I feel my mam with me all the time and little signs around my home proves it, your nanny will most deinitely be there to see you walk up the aisle this month. Unfortunately for us we can see them but they can see us. My mam was onlpy 70 years old when she passed away and i believed she had years left in her until the cancer took over. My 8 year old son will be makign his communion in may and like you i am heartbroken that she wont be here in the flesh only in spirit. I would give anything to hear her say, "my lovely little prince". i will juts have to keep it in my mind that day that she is saying it and I juts cant hear her. I am here if you ever need a chat. take care and for your nannys sakwe, enjoy your big day if it hasnt happened already. take care. kazxx

TrishLey profile image
TrishLey

I hadn't a clue. Breast, yes. Cervical, yes. Ovarian, no.

Stage 3c and still going after 2 years. At least all my friends and family are aware of it now.

Suziequatro profile image
Suziequatro in reply toTrishLey

I haden't a clue either ,an my mother died 13years ago with Oc , one month before my mam died she said to myself and my sisters , please girls make sure you have your smear tests done regularly , she taught that would help us . I made an appointment for my smear test and had no other reason to see the doc , by the time my app came 6days later I said to the doc you don't have to do my smear , I'm very uncomfortable with a bloated stomach , I'd rather sort that out. I had no clue I had Oc . I was definitely not aware.

CollyBrown profile image
CollyBrown

Like TrishLey, our friends and family know all about it now. Stage 3a. Our GP hadn't a clue either. Loads of brochures and leaflets in his surgery on breast, cervical and prostrate cancer - zero on ovarian. Is it a conspiracy of silence by the medical profession?

anbuma profile image
anbuma

yes.i am certain from my symptoms i have oc yet doctors dismiss everything I tell them.i have gained 1 kgs in weight all abdominal .lost weight 18 months ago and again a few montsh ago btu scales not show weight loss as counterbalanced by abdomen.cant eat much haven't done so fro at least 2 years and now only able to eat breakfast .feeling full and pressure on ribs and abdomen esp when got dressed.my dogs sense it especially the last few days-off their food and snuggling upclose.CA 125 tests were raised last year.rheumy said had to diet as gained 11 kgs -when told him all abdominal he wouldn't accept this and the reason for seeinghim (lupus symptoms )were never looked at.my dr ahsnt a clue-has never given me any answers - saying things like "its your stomach" or "wear make up"(ref to bruising around eyes)and its bloating (18 months after problems started) with no further explanation. I know from tv and other sources that ovarian cancer is mistaken fro a bowel condition (ibs)by doctors and know of 2 people who have experienced this -one recently losing her life.yet doctors still dismiss symptoms

have had increased pelvic pain .stomach as hard as rock -ever increasing and more weight loss everywhere else.no appetite.

naomi88 profile image
naomi88 in reply toanbuma

This post is 4 months old, but i feel that you need an answer. You feel like you are not heard by doctors. I suggest just knock at other doors. First thing you ask the GP is for a referal to gynecologist oncologist and if you have a name ready even better.

Em123 profile image
Em123

No I wasn't aware of it and I am trained in health modalities. Cancer is classed as a 'no go area' and no other health-related practitioner is allowed to comment on it or look into it on a patients behalf, unless they are an MD. This creates a (very frightening) wall of silence. Maybe if a broader range of practitioners were allowed to be openley taught about cancer, its symptoms and treatments many more people could be helped.

AllyGY2013 profile image
AllyGY2013

I was aware of many cancers but not ovarian cancer.

I'm currently waiting to have my blood test for my CA125. Was diagnosed with vasculitis just over a year ago. Thought the symptoms (bloating etc) I had were side effects of medication and my time of life as I'm 49 later this month.

Heard of it but never realised the symptoms are so like so many women get from time to time. It is madness we think it is a young persons illness. The problem is greater in post menopausal women , doctors just dont listen or are uneducated to spot the illness in women of this age. My mum is 73 and is going through a horrible nightmare because when she explained to the doctor on a number of occasions her symptoms but was ignored. GP's need to refer patients who present with symptoms and not just presume its IBS or the menopause. Jade Goody [RIP] educated a whole generation on cervical cancer and it is now normal for girls to follow up on this but we need more education on OC. I thought OC and cervical cancer were the same cancer and both would show up on a cervical smear..... how wrong was I?

Shookup profile image
Shookup

I was aware, but, stupidly buried my head in the sand. Was only when the pains left me unable to even turn in bed without sobbing in pain, holding onto the work top to chop veg, sleeping at the drop of a hat, bleeding abnormally, etc that I finally admitted it could no longer go on like that. I haven't been diagnosed with OC, after loads of tests they suspect it isn't that after all (still not 100% still having check ups). The scare has definitely taken that head out of the sand and never again will it be buried.

One positive to come from my scare, friends/relations have popped off to the doc with various health concerns they were ignoring after seeing me go thru it.

No I was not aware of Ovarian Cancer but i was of most of the other cancers. I want to A&E with unbearable right tummy pain, and to the Gp for months with weight loss, pain and shooting pain, and most several fatigue - on the couch for a week not able to make a cup of tea. I was on two occasions in hospital for approx a week at a time, they all thought it was gallbladder ( inflamed ) and i was to wait until the 'gallbladder' calmed to remove it- so facilitated a longer proper diagnosis. I'm 42 years old with a full time job ( main bread winner ) , 2 small children and I'm artist and other creative ventures this has not come at a good time - there is no good time for cancer . Im angry that it was not picked up sooner .

is it normal to be so angry? - its very frustrating to know what to do about it .

be angry now or just ignore the past .

Sinead

Emalou71 profile image
Emalou71 in reply to

Hi, you have had it tough getting the diagnosis. My diagnosis was quick after symptoms appeared but still stage 4 :( I feel angry at times that this has happened as like you I was diagnosed at 42. It would be only natural to be angry and I'm not sure how you let go of the past especially as the diagnosis was so long in coming.

I hope your doing well, and channelling that anger into fighting back......

Xx

Gina555 profile image
Gina555

I'd had an OC scare seven years earlier, when an ultrasound showed a simple cyst on one ovary, which had thick walls and it's own blood supply. However, as this didn't grow, it was decided to leave it alone, and I forgot about it. When I got symptoms of OC in 2012 (constipation, bloating, expanding waist-line) I didn't connect them to OC, but put them down to 'middle-aged spread' and IBS.

Emalou71 profile image
Emalou71

I knew of OC but had no idea about symptoms to look out for, unlike breast cancer for example. I have since seen the BEAT awareness posters.

Fuffyfrost profile image
Fuffyfrost

I was aware only because my two sisters are nurses and talked about it being the silent and deadly disease. I had no symptoms but abnormal cells on a smear test . Cancer in Fallopian tubes found out after radical surgery . Xx

Lily-Anne profile image
Lily-Anne

My aunt, not a blood relative, passed away when I was ten. She had eight children, married to my Mum's brother we spent a lot of time there anyway and more so when she was ill in bed my Mum was with her when she passed away my memories are still vivid. I'm very close to my cousins and we talk about it, for them a stark reminder when I was diagnosed. This was 1975 so not so much in the way of scans but it was advanced.

LA

Murt1 profile image
Murt1

Had heard of it but was unaware of the symptoms. The symptoms seem so innocuous that I felt it was silly to mention them to my GP. There needs to be much more awareness around the subject of both ovarian and uterine cancer.

Damelza profile image
Damelza

The silent killer... thats the problem

Paulmck profile image
Paulmck in reply toDamelza

So true

Paulmck profile image
Paulmck

No idea and unfortunately GPs are so pressed for time that they often dismiss the symptoms as what they used to refer to as "women's troubles". We only got a CA125 after everything else was exhausted and by then it was too late. To not make CA125 tests widely available on the basis that "they provide many false positive results which may unduly distress the patient" is ludcrious. I'd rather have a false positive and get thoroughly checked out, than no test and effectively die of ignorance.

Onia_cat profile image
Onia_cat

I was aware but I didn't have all the information I have now. My GP referred me to a gyn when I went to see him because I had an unusual bleeding, after few tests did show only a thickened endometrium. And he never talked about OC. But I guess that after all I was lucky because he referred me to a specialist quite soon. I was stage 1b. I agree that there is very little information about OC, and I think people should know more about it.

I was very aware of it when I had a full hystorectomy followed by oophorectomy 17 years ago. I was given the all clear with nothing to worry about. I was diagnosed with stage 4 in January ,2015 although everything had been removed.

It's called "metastatic undifferentiated stromal sex cord tumour"

Very rare and only trying the usual treatments not knowing how they will respond.

Seasun36-uk profile image
Seasun36-uk

Aware, am a nurse, but my symptoms were so vague - waist expansion (thought it was 'menopausal' weight gain), windy stools (thought it was post gall bladder removal symptoms playing up) & fatigue (thought it was long hours at work!)

REMC profile image
REMC

A friend of a friend had it twice so I was somewhat aware of it.

No never even heard of it. Even the gynaecologist was confused only got a CT when I said I had a family history of bowel cancer. Finally, they saw the tumours and did CA125. This was 9 months after seeing the gynaecologist for the first time and having several ultrasounds.

Zee4529 profile image
Zee4529

Am new to this but find some of the replies very sad. I was diagnosed early 2011 and after debulking surgery and two chemo sessions I was declared free five years later. Two months later it was back and after more chemo my tumour count dropped right down. That was eighteen months ago but although it is still with me I am regularly monitored and feel fine. I started taking CBD oil last July (does anyone know why it is SO expensive?) and do feel that while it doesn't cure it can stop the metastases in their tracks. Anyway I am still here eight years later and intend to still be here ten+ years from now. I try and spread the word that ovarian cancer is not necessarily a death sentence, early diagnosis and the right treatment is best but even with a stage 3 and a tumour count of over 4000 we can all still be here some years later.

Jo-Jo1-UK profile image
Jo-Jo1-UK

Didn’t know the symptoms of ovarian cancer at all. Came as a complete shock when I was diagnosed. The problem is a lot of the symptoms are so vague and can be attributed to other things e.g. bloating. Profile of ovarian cancer and it’s sympromts definitely needs raising so ladies are more aware of it and can seek help much earlier.

BikerDoc profile image
BikerDoc

Yes, but only professionally as a family doctor. None of my loved ones were ever affected at the time of my diagnosis... now I know more than I ever wished i had to.... I just wish more doctors knew - especially the one (a gynae consultant!!) who saw it on laparoscopy, and through his "magic eyes" decided it was benign...it would have been stage 1 then.... not where it ended up after he decided to poke at it and never send histology. He treated me for infertility... ironic thing is, I'm now 'barren' and live my life in 3month blocks between scans and results... we need more awareness- especially the medical community #fightovariancancer #increaseawareness #letsmaketealsexy

21752 profile image
21752

I was aware but didn’t know a lot, I never connected my sister having ovarian cancer and the possibility of there being a gene. After my sister passed away I got ovarian cancer and subsequently found that I have BRCA2. I’m glad to know this now as I am able to inform my family and extended family, I feel I have made a contribution to my family’s wellbeing albeit to late for myself. Many thanks 21752

Sunpoet profile image
Sunpoet

I asked my primary care doctor being 66 years old what are the chances of getting tests done 2x a year instead of every year. Tests were not performed, the nurse who checked me said oh we don't need to test , a year later i was diagnosed with a small watermelon size tumour attached to my right ovary and appendix and small intestine, and burst during surgery with Robotic Surgery , they said the lining of the ovary was too thin thats why it broke why couldn't they test before it became so big. Or at least test the organs. Complete hysterectomy and now under chemotherapy because of the rupture of the mass. Why can't doctors check for older women sooner? Doesn't seem like preventative care please advise.

tisha10 profile image
tisha10

I had never heard of ovarian cancer and thought that by having regular smear tests any cancer in my lower body would be identified

A year of GP appointments before diagnosed. Had never heard of it.

So much more awareness in 4 years.

Grankidsxxx profile image
Grankidsxxx

I was aware of it as it was in my mums family. I got tested for BRAC1 BRAC 2 which were negative. A couple of years later was diagnosed with stage 3c serous OV Unlucky I guess.

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