Ovarian CA worries please help

[merytre]

I just found this site. I am 42, and have been having bladder fullness for a while, and painful menses for about 6 months.  I went to my gyn and they found two huge masses on my ovaries.  They said they were complex masses, not cysts, but didnt think it would be Cancer.  Since I am done with kids, I have two, we decided on a hysterectomy.  He saidd he wanted to check the CA125 just to make sure he doesnt need a GYN ONCologist at the surgery.  Well he called me and left the number for his cell phone and told me to call back last night.  Seems my ca 125 results are equivical?  The number is 39.  He wants to rush the surgery and have an Ocologist there also.  I am soooooooooo upset an scared, I dont know how to deal with this.  I am crying all the time since last night.  My family is great and supportive but I just can't imagine leaving them??   Sad in Atlanta

[sami2]

Hi merytre, I am a lurker on this forum and it has been a tremendous help to me. I wanted to respond to your post because it sounds exactly like what happened to me back in January. I also had bilateral cysts on my ovaries which I never knew were there until I had an ultrasound done. I wanted to have the Novasure ablation done and needed an ultrasound first. I also had painful heavy periods. To my surprise my doctor told me I had two big complex cysts on both ovaries and needless to say I was freaking out. I had suffered with endometriosis for a long time so he wanted me to know that he felt it was PROBABLY endometiomas because it was bilateral. In fact he felt more sure of them being this because I had one on each ovary, but of course there was always the possibility of it being cancer. He told me he would be more concerned if it were only on one ovary. I had a hysterectomy in January and it was exactly what he said, endometriomas, and I had a complete hysterectomy. And I am here to tell you that I have never felt better in my life. I just wondered if you have endometriosis. You can have it without ever knowing about it. I just wanted you to know about my story with bilateral cysts. Good luck to you,

[scoutshadow]

Having a gyn/onc on standby is excellent and please see it as an added safety net.  All options must be covered.  

With regard to the CA125 mine pre op was 10 and yet I had a tumour removed which was the same as the last one 16 years ago.  The test is very useful for those who are diagnosed firmly with ovarian cancer and are undergoing chemotherapy.

It is a worrying time but please be assured that you are being taken very good care of.

[merytre]

Thank you thank you thank you to all who have responded.  I really feel I am not alone now.  This is like a gift from god, and it probably is.  I feel more relaxed now.  I will keep you all posted on what happens.  I am anxious to see when the schedule my surgery.  I KNOW the wait will seem FOREVER, but it sounds like everyone has to go through that.  God bless you all.. Merytre

[Lizza]

Hi darlin, I know how worried and consumed you feel right now.  I've been there and was SO frightened that I could neither eat nor sleep for a week until my surgery.   My story:   I was having what I thought were UTI's after UTI's.  Not only that but I was having trouble with constipation for over a year and my pants weren't fitting the way they used to around my middle.  ALL the classic signs of OC that I didn't know about.   After several months I went to my OBGYN and she immediatly sent me for a transvaginal ultrasound and tons of blood work.   They found an irregularly shaped complex mass on my left ovary that looked very suspicious on ultrasound.  My CA125 was 69.   My doctor looked me straight in the face and said "I'm very worried and think you might have OA."   She had my surgery scheduled for a week later with the OB Oncologist and the waiting and worrying nearly killed me.  ....I was fine.  I ended up with an Endometrioma and no cancer.  

No one is able to tell you whats going on with you but take heart that we're all here to get you through it.  The ladies at MedHelp got me through and we'll do the same for you.  Others have posted how lucky you are that your doc is taking this seriously and they are SO right.  Its most likely you have nothing serious but in the small chance you do, its the right thing to do to get it out.  You said your doc is only going to have the OBONC on standby...to me, thats sounds good.  I didn't have one on standby, they sent me over to him and he did the surgery because everyone thought I did have cancer but didn't.   Doctors can only go by tests and those results can be alarming.  Please know I'm praying for you and look forward to hearing you are alright.  Good luck, God bless and listen to everyone here.   xoxoxoxo

[Anna-maria74]

Could the size have anything to do with the 39 ca`125 elevation?



Yes mine sure did. My ca 125 was 42 and I thought oh well thats it then but it came back a benign mucinous cystadenoma.

Saying that mine was huge - 20 cm.

That damn test :|

Anna x

[dian07]

Hello...dian here...I am a 56 year old woman who will be one year out from chemo on September 13....I can tell you I have been where you are...I was afraid that I had cancer and figured if I did surely I was going to die...hmm...that was back in March of 2005....I am still here and not planning on going anywhere....if indeed you find you have cancer...be glad it was found now, not later, and know , as was said earlier, ovarian cancer is not a death sentence anymore...we fight and continue to fight as long as necessary...we arm ourselves with knowledge and share our experiences with others in the same boat...you are one of us now (whether you are in the 1% club or the 99% club....99% of tumors are benign by the way)...we are here for you and you will be here for others in the future....we will walk this path with you...we are just as close as your computer...maybe even closer...where are you?  
I am impressed that your doctor is not taking any chances...he is making certain the best care is offered...not all are like that...YOU HAVE ONE CHANCE TO GET IT RIGHT THE FIRST TIME...your gyn is making certain you do just that by having a gyn/onc around...he is not there just for cancer....his specialty is gyn surgery....please stay in touch...know there are many here who truely care and will help any way possible...you are not alone.
Peace.
dian

[Foggybottom]

Please don't get too worried yet!  I know it's impossible not to.  I just had surgery for an endometrioma.  My CA125 was over 100 and the doc wanted to do the surgery right away becasue he didn't know for sureand the CA125 worried him.  I was driving myself nuts for 4 weeks waiting for the surgery, then driving myself nuts waiting for the pathology.  In the end it was benign and the CA125 was eleveated due to endo.  Yours is still in the normal range, so don't worry yourself sick!

take care

[Tybear]

I wouldn't worry too much about the fact that you have "cysts" on both ovaries - I had cancer spread to my bowels, bladder, stomach lining and only one ovary. The other ovary had nothing, as did my fallopian tube, uterus and cervix - go figure! Ovarian cancer can only be diagnosed during surgery, when proper biopsies are taken. Again, it's good that you will have a gyne/onc on call for your surgery - if it is cancer (that 1% chance) your survival rate increases if your surgery is performed by a gyne/onc as opposed to a regular gyne. I know this is a lot to take in right now - your head must be spinning  with information overload! Sorry if we've overwhelmed you a little ... we're a passionate group of women here who just want to help!
Take care,
Becky

[gah_70]

The doctor is giving you worse case scenario.  That doesn't mean you have cancer, but in that tiny little bitty 1% chance that you do, he wants you to be prepared.  Having the Oncologist on standby just means that when the GYN gets in there and has look and takes a biospy, if he needs the Onc, he can call him.  Benign conditions, such as non-cancerous masses do cause elevated CA125's, so your result really doesn't tell you much.  I wouldn't dwell on that if I were you (easier said than done...I know).  But, if you can, take a deep breath, calm down, and feel confident that whatever is going on in there, your GYN is doing a good job at covering all the bases.  I don't know of any statistics that give the percentage of OvCa or not if the masses are on both ovaries, but know that there is only a 1% to 3% chance it is cancer at all.  Best of luck to you, and hang in there.  This is a great group of people here, who are always willing to listen and share their experiences.  Please continue to check in and let us know how things turn out.  I'll keep you in my thoughts and prayers!

Gail :)

[merytre]

Thanks so much to everyone for the fast replies.  Well the Doc didn't actually say a gyn/onc would be present, he said he would have one on stand by????  Something like that, its hard to remember everything they tell you when they are giving you bad news it seems.  Does anyone know if it is possible to have benign tumors on both ovaries or is cancer usually on both?  Cause what I have is on both, they said they are large orange sized.  Could the size have anything to do with the 39 ca`125 elevation?  Also, has anyone ever heard of having very painful periods with OVCA?  I am sorry to pester you guys with all these questions but I am just sooo afraid.  This site is great and I do feel better just talking about it with others who understand.  Merytre

[scoutshadow]

Three cheers for your gynocologist.  He is looking after his patient well.  Having a gyn/onc do your surgery is giving you the best possible outcome.

This is a very worrisome time, I know because I just had surgery done 10 weeks ago.  It certainly will cause alarm and fear.  But be assured you are in good hands with regard to your treatment and surgery.

All the very best to you.

[Tybear]

I certainly understand you concern. Please know that your Dr is doing the right thing by having a gyne/onc present at the surgery. It does not mean you have cancer by having him there, but he has much more knowledge and training (4yrs more) than your regular gyne - as Dian would tell you, you have only one chance to get this right. You have an excellent Dr - good on him for being pro-active and taking this step. Secondly, the CA125 test is not used to diagnose Ovarian Cancer and is a poor test in pre-menopausal women. Many other benign conditions can cause an elevation in the number, such as fibroids, endometriosis and even an irritation in your abdomen. 39 is not too alarming - a number of women who have Ovarian Cancer will tell you that the numbers can get up into the thousands. The CA125 test is more used after a diagnosis of cancer has been made, as a marker to follow during chemo. I also want to tell you that if this is Ovarian Cancer, you are not going to die - this is not a death sentence, and you are not going to have to leave your family. I am 27yrs old and was diagnosed last September 30th with stage IIIc Ovarian Cancer - I am a single mom and had the exact same concerns you are having now. I'm not going to tell you not to be scared - of course you are! But do your research now, gather your questions and arm yourself with knowledge - the more you know going into this, the better prepared you will be, whatever the outcome. There are so many wonderful women on this site who have been where you are right now (including myself!) and will be here to answer any questions or concerns you may have. I'm glad you found us!
Becky

[skin matters]

Dear Sad in Atlanta. Im so sorry, I would be worried about this not knowing the outcome, but it sounds like your doctor is really on top of things, I wish more were that proactive.  Let us know when you will be having surgery so I can say a prayer for you.

Holding good thoughts and prayers for you that all will turn out right. I wish I knew more about these issues myself to help alleviate your fears, but I have learned through my other critical illness that just when you think there is no light, the light comes through brightly and you know somehow you WILL make it through things.
many hugs for you.
Skin matters (at least my hands are better right now so you can acutally read my writing (smile).