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8 cm complex cyst and CA125 of 130

Recently diagnosed with a 8 cm complex ovarian cyst and scheduled for surgery Sep 6th.  Just curious how many of you had complex cysts with elevated CA125s that turned out to be benign?  What kind of CA 125 levels did you have?  Anyone know what the stats are?

How long between diagnosis and surgery did you wait?

Also how many had symptoms?  I have abdominal bloating (can't eat more than a few bites, even when I'm starving), some urinary urgency, fatigue and shortness of breath.  How long did you have these symptoms prior to diagnosis?  As I think back, it's been a while, I just thought I was getting old and fat!  

And those with endometriomas, how many just removed the ovary vs everything? And what was the deciding factor?
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167426 tn?1254086235
I am concerned about the 5 more weeks of waiting for your surgery.  If by any chance it is cancer, the sooner the better for you.  get the Onocologist surgeon, usually a frozen section is done while you are under and a dx can be made.  I did not see what the CA125 reading was, you say elevated. Let all hope it is a benign mass and that you will join the club. We just have to keep spreading the word about these symptoms as they are being ignored by too many for too long.   Good Luck
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Avatar universal
Kind of scared.  I was told in 2005 that I had a cyst on my right ovary.  I wasn't really worried.  I've been dealing with female issues since the age of 14. Endometriosis, Major Cramps, Nausea, Gasto issues, Laparascopies. Laparatomy, Surgery of the Bowel and Bladder for Endometriosis, Removal of Left Ovary at Age 29, Fertility treatments with no success - basically lived at the doctors offices and hospitals.  I am now Age 37.  I never followed up with the last appt. because he kept rescheduling according to my cycle and it was too many appointments.  He said, "could be a good cyst or bad cyst - good cyst meaning the type we get when we cycle.   Eventually, we lost our health coverage and I have just not even visited the Gynecologust.  Prior to that I would visit for bleeding during intercourse, continued cramping, etc...So, in the past couple of years I have gained about 30-35 lbs.  Unusual for me.  And sudden.  I gained weight during fertility.  Size 4-6 to a size 8.  Went back down to my size 6. Two months later I was in a size 10.  No one if my family is heavy and I was always considered extremely thin my entire life.  I know all about metabolism but I knew this was different.  I went for a regular thyroid test and diabetes test.  Nothing.  Other women with thyroid issues kept telling me about the extensive thyroid testing with dye testing, etc.  I have many other symptoms - there's a very long list.  No one was finding anything and I knew that I was not feeling well.  Finally, my husband and I found health insurance that is expensive but we are doing it - we are both self-employed and new in our businesses.  A few weeks ago - I scheduled lots of appts.  My pap was normal.  My mammogram was norma.  I went on Monday for a vaginal pelvic ultrasound to review the prior cyst on my ovary from 2005, and an abdominal ultrasound.  I have been having pains in my abdomen for 2-3 months.  The nurse spent a very long time on the ultrasound and brought the Radiologists in to tests again.  They somewhat scared me by saying that I do have a cyst on my ovary but that it was indicative of the type you would see from Endometriosis or from your cycle.  I am supposed to go back to my Gyn. on Aug. 6th to remove a reoccurring skin tag.  This morning I had the extensive blood/dye 1hr long test for the thyroid and I get the results on Monday.  When I returned home the Gyn. office called to inform me that the Dr. had reviewed the ultrasound results and that I do have a cyst on my right ovary.  They have ordered different blood work that includes my kidneys and two CA tests for Friday.  She said that it is a complex cyst.  After getting off the phone and becoming very worried I called back and she informed me that the size is 7.9 x 7 x 5.7 cm.  I am clueless as to what this means.  But, my two thoughts from my symptoms (weight gain, etc...) were that I have either Hypothryoidism or Polycystic Ovary Syndrome.  I asked if the Cyst could be from Polycystic and she said No.  So, where does this leave me?  What is this cyst.  If you gype in 7.9 complex cysts - links come up for ovarian cancer.  I am just so sick of this all.  I have dealt with female issues for 23 years now - my doctors have suggested hysterectomy but we waited because I did not get married until I was 30 and we wanted to try to have children - no luck!  So, I'm childless with a very unfortunate past of feeling like dirt and now this?  Could this be anything positive?  So, ready to just be well and normal again.  
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Avatar universal
REad your comment sounds right the gyn/onc suggestion.  I am having surgery next week with a regular gyn he says he will have other surgeons there and a pathologist is this standard when being staged for Ovarian Cancer?
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Avatar universal
THanks for the post!  Sounds like we might have a similar case.  I hope mine goes as well as yours did!

Thanks for sharing!
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Avatar universal
Thanks all,

I
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Avatar universal
Hi, I have not posted in a while, so let me fill you in!  In April I discovered what we thought was one pelvic mass, CT and US indicated one 8cm mass. All set to have surgery by regular gyn, the Ca 125 results come in at 123.  She turned me over to a gyn/onc the very next day I saw him, he was ready to surgery the day after I saw him.  I was pretty certain things must be bad, if the head of gyn/onc for the Cleveland Clinic system will put you in within 24 hours.  Well, surgery was performed the next week, I had consented to the removal of anything necessary.  Fortunately what was discovered was bilateral endometriomas, (TWO,) one was 9cm. and one was 11 cm. I had a total hysterectomy bilateral salpingo-oopherectomy.  I do not regret for one minute having them remove it all.  I am fortunate to have three beautiful boys, and I don't really want to deal with that fear returning.  I was a basket case before the surgery. I had a laparotomy with vertical incision.  It wasn't awful, the first week wasn't fun, but after that was fine. I have had zero menopause symptoms, So I  have been fortunate.  So it is possible for it to be O.K.  Good Luck, Shari
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Avatar universal
Hello,

I have a large 13cm cyst as well as several other symptoms.  My CA-125 level was slightly elevated and I am scheduled for surgery on the 31st of this month.  My doctor expects to find a bad case of endometreosis.

BUT - I do have  friend who who had a grapefruit sized cyst and a high CA-125 level who was told she had ovarian cancer ONLY to discover that it was truly endometreosis....so you never know until the biopsy comes back.

Don't worry.  I'm sure you have been told that the CA-125 is not reliable at all (for dianosing ovarian cancer) and that most cysts are benign.

I too ignored my symptoms for months and now that i have been diagnosed i think EVERY twitch and pain is coming from the cyst when before I would have ignored them anyway.  So don't read too much into the symptoms.

I believe that if the doctor was more concerned he would have scheduled your surgery sooner rather than later.  But perhaps you should tell him you aren't comfortable with waiting that long and ask for some more tests (CT scan, MRI, etc) in order to help get some clarification.

God bless you,
laura
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Avatar universal
Hi!  I am a week out on having a 8 cm dermoid cyst removed through laparotomy. I am 26 years old.  My family has a strong history of ovarian cancer so my dr preformed the CA 125 test and it was in the normal range, but was told by my doctor that that is no assurance that you do have ovarian cancer it will take a biopsy to know for definite and most of the time that can be done laporoscopic which isn't as bad as open.  But you will probably still need help with the children.  Good luck!
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Avatar universal
Thanks Everyone!

Mikki, was your cyst a single cyst or did it have septations?  I'm in your boar, 47 years old and no children in the plans, so maybe I should go ahead and do everything, it just seems a bit drastic is it's only an endometrioma.....

Mother of 2, what was your CA 125?  Why does the doctor think endo?  And was your cyst a single or complex one?  And yeah, I know I'm over reading the symptoms.........  :)

Becca,  Glad it wounds like your will be just a simple dermoid!  Best to you!
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135691 tn?1271097123
I am 26yrs old and my CA125 was 46 prior to my surgery. I was diagnosed with stage 3c Ov/Ca after my surgery. Obviously this is not a reliable test to diagnose this type of cancer, and no Dr I know would ever tell someone they have cancer based on this blood test. Ovarian cancer can only be properly diagnosed through a biopsy, and then the CA125 test is used to monitor levels throughout chemo to see if the tumors are responding.
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Avatar universal
Sorry for all the typos above, I guess I should spell check first!
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Avatar universal
Tybear is correct in all she says...still...I am concerned I haven't heard anyone saying they are having their surgery done by or consulting with a gyn/oncologist....am I not hearing everything....ladies....YOU HAVE ONLY ONE CHANCE TO GET IT RIGHT THE FIRST TIME.....and for the best prognosis, you must see a gyn/oncologist as this arena is his specialty!! This is definately the person you want doing your surgery, because if cancer is found they are your best hope in getting it all removed...that includes endo or dermoids or whatever is found....please do yourself a favor and find yourself a good gyn/oncologist.
Peace.
dian
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Avatar universal
My CA-125 was 40.  My cyst was complex.  My dr told me that the test means nothing (either way) and that, yes, my chances are not 0 about cancer but that they are very very low.  I'm only 32 and have a whole lot more to do and a lot more of the world to see.  

So, i'm keeping my chin up and believing for the best....taking one day at a time.  I gain nothing from worrying.

I hope I answered your questions.

Laura
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Avatar universal
I had an endometrioma removed in 2004.   I had symptoms for seven months prior to the surgery.  BUT, I did not recognize the symptoms for what they were until just weeks before my surgery.    My cyst, at removal, was larger than yours (roughly 15 cm) but my CA-125 was within normal range.  

It was removed along with the effected ovary and fallopian tube.   Had I known then what I know now, I'd have gone in for a complete  hysterectomy instead.   Since the 2004 surgery, I have had several incidences of cysts forming on the remaining ovary, and also required a procedure to remove polyps from my uterus.    However, I am already perimenopausal and  not desiring to have children, so perhaps it is easy for me to feel this way.
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