348243 tn?1213139885

Stage 1 - how was you diagnosed ?

Hi, my mum passed away from ovca in Oct 2007. She was stage 3. My mum had no symptoms until it was too late. I saw my gync. and he said because of family history (my mums cousin has ovca) my chances of getting ovca had risen to upto 40%.
Anyone who was diagnosed stage 1, did you have any symptoms ? Did you have regular tests of some sort ? Becuase I have endometriosis my gync. said he would not do a ca125 because it can be raised because of endo.
Many thanks for any advice.
Sam x
11 Responses
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194838 tn?1303428544
Hi , I was diagnosed stage 1a ovarian cancer and my cancer was endometriosis that had turned malignant, this is a rare happening though . I had a lot of the usual symptoms but was fobbed off for 18 months . I had CA125 blood tests and tvus . I would trust your instinct and if you start having symptoms or your endometriosis worsens then I would insist on tests.

Helpful - 0
Avatar universal
I had symptoms (indigestion, bloating, pain) that worsened severely over 3 months. Gastro doc found "mass/cyst' with CT and 2 Gyns said it was nothing, but symptoms worsened. Gyn onc thought it was endometriosis and endometrioma ("chocolate cyst"). Surgery found borderline or LMP tumor and extensive endometriosis.

So trust your instincts, since you know your body and what is normal and what is not.
I knew something was not right. TVUS or CT probably best test, but maybe should get a baseline CA125 and if god forbid, you have any symptoms and CA125 rises, may indicate something. I believe in using all tools available, especially with family history.

Very sorry about your mum. Best wishes.

Helpful - 0
378425 tn?1305628294
I was dx with stage 1A also.  I had bloating, gas,  a feeling as if I needed to urinate quite often and the feeling that my stomach was heavy, (hard to explain). I also had a complex cyst on right ovary.  I had two CA125 tests done both came back at 11.  And Local drs.did do tvus on regular basis. My one cyst turned into two cysts then when I went to onc he also discovered local drs miscalculated size which each cyst came in at 5 X 5 each instead of 3 X 3 each. After surgery the onc said I had goblet cell mucinous carcinoid.

I also knew something was not right, this cyst did not feel like any of the others that I have had in the past.  

I hope this helps, so sorry about your Mum....

God Bless,

Helpful - 0
155056 tn?1333638688
Sam - I had all the classic symptoms....bloating, feeling of fullness, bladder and bowel issues.....for a long time.  I was diagnosed by luck....I had really bad pains below my breast, my doctor did a sono and saw fluid and sent me to the ER with a script for a surgeon, not really knowing for what.....they did a CT Scan and found 4 very large cysts, one in each ovary and tube.  The only one that came back, Stage 1A, was the cyst in my right ovary.  
How often do you go to the GYN?  How often are they willing to do sonograms?  You need to be watched closely and even consider surgery at some point down the road.  This disease is horrid, and you need to do everything possible to keep yourself well.
Best of luck....
Helpful - 0
398758 tn?1248220291
Sorry to tell you the bad news, but I was found to have stage IC with absolutely no symptoms. Nothing.  The doctors were checking my fibroids, when one of them (the fibroids, not the doctors!) looked suspicious. Thank the Lord that they were thorough enough!
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Avatar universal
I was diagnosed with Stage 1 Ovarian and a second tumour Stage 1 within the uterus. My syptoms were over 6 month period bloating looking pregnant despite diets and exercise. Gas esp at bedtime tension over the abdomen feeling like it was going to burst like tying a tight knot.  I felt distended and had a few episodes of not beeing able to pee just kept putting it down to being a bit over weight and ? prolapse. My complex mass was discovered as an emergency it was a blessing that I had went into acute urinary retention or I would not be alive and given a chance.
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Avatar universal
I have stage3-c I have had a hysterectomy (Abdomnal) and a Tumer as big as a football and looked like one too ! Now Im going for chemo on tuesday. My Diagnosis was Due to alot of the same symtoms,. I gained alot of weight and My menstrel cycle was all messed up. I was very depressed. At first My Doctor thought at first I was going into menapause.  Then I started getting this heavy feeling in my pelvic area.then some pretty severe pain. My Dotor listened to me and thenk God he is a great Doctor, had me do a blood panal and a ultra sound.I`ll never forget the women doing my ultra sound, she picked up the phone when she could not find my ovaries, I said ok something is wrong ! And of course she could not tell me, but I knew something was wrong. Then I got the call from My Doctor. And I cried like a baby ! They then said were sending you to the big boys for this in Seattle. Where I had a world renounded surgen to my Surgery ! I Now say everyday how Lucky I am, and I believe in my healling !
Helpful - 0
Avatar universal
So far, though I am waiting for pathology report - I have been staged at a 1c. Looking back I probably had slight symtoms, but I was training for a half-marathon and thought the bloating was due to drinking so much water - and the frequent need to urinate as well. So I would have completely ignored those signs if not for a sharp pain in my right ovary when doing sit-ups. That turned out to be a normal, grape-sized cyst - but ultrasound then found the large mass on my left ovary - by accident. (thank GOD) When they opened me up to take out the mass - despite the specialists thinking for sure it was benign - they found it was cancerous. (and they had even suggested we wait another 6-8 weeks to see if it grew or started to shrink but I went with the other choice - surgery - and thank GOD, again, that I did.) So as the other ladies have suggested - listen to your body! If you feel something is wrong - push your doctor to check it out. It will be worth it in the end - whether for peace of mind finding out all is well, or early detection.

I also had a lot of menstrual-type cramping mid-month when I ovulated.....the pain even woke me up in the middle of the night, and made it hard to run as well. My oncologist said that is typically not a sign of ovca, but.....it started quite suddenly and so I am wondering............oh - and I was extremely tired all the time.....but again - working full time, training for a half-marathon, taking care of horses - I thought it was normal.

Hope this helps. Take care!  Amy
Helpful - 0
348243 tn?1213139885
Thank you all so much for taking the time to reply. I know you are all right I need to listen to my body, but I think sometimes I get myself in such a state thinking of this cancer all the time that I worry at the slightest niggle. Having endo doesnt help as I get pain mid cycle already.
Ive decided to have an ultrasound once a year, and once I have finished having my family having my ovaries removed.
I pray for you all everyday. I wish I had found this site sooner when my mum was first diagnosed, maybe we could of done things differently, and she might still be here.
Much love, Sam x
Helpful - 0
488478 tn?1275022517
I was advised by my gync. to have an ovarian ultrasound and a ca125 test once a year, because of my mum's ovca.  The ovarian ultrasound, as she told me, shows in great detail the state of the ovaries, which puts my mind somewhat at ease.  
I must confess, dear Sam, I am as terrified as you are with the thought alone, that either I or someone close to me, might have to go through what my mum went through because of this terrible desease.  Chances are, that with these tests, if there is something wrong (God forbid) it will be detected soon enough, something that our mothers never had the chance to do.
Take care and keep in touch.
Lots of love
Helpful - 0
132752 tn?1273342273
Hi, Sam...
I'm sorry that you're going through this right now.  It's extremely difficult to desperately want a concrete answer, and then be told that you can't have one.  I was diagnosed at Stage I, but only because I was lucky enough to have had the mass found during a routine  gyn visit.  The doc had actually mistaken it for a pregnancy because of its size and its location.  Because it was so large, t had actually shifted to my midline.  Over the years, I've heard docs state their lack of use of the CA-125 due to many reasons.  I would encourage you to have a BRAC analysis done for yourself.  http://www.bracnow.com/ had some good info for you.  

As easy as it might sound to say, do your best not to live in fear.  Be vigilant and stay educated.  If you have questions...definitely ask them.  The women here have become knowledgeable the hard way, and are more than willing to share what they have learned with you.
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