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Dreading upcoming results of CA125 test

I'm 68, a full-time breadwinner. I've believed myself to be in good health, but I just learned I have a very large ovarian cyst extending across the abdomen, 27 cm wide. It was discovered during hernia repair surgery a week ago. Its presence surprised the general surgeon doing the procedure, and surprised me too - it is so huge that it had popped out the umbilical hernia. My belly has seemed large for around 5 years and I have bought my pants and skirts one-two sizes larger than my tops; but I thought it was due to overweight (which, however, has been next to impossible to lose). I have had no other symptoms whatsoever. The surgeon said this thing certainly hadn't appeared "over night" and felt it would probably prove benign. A CAT scan revealed a large cystic mass - other organs scanned as normal. The surgeon said it appeared to the naked eye as unilocular - a smooth-surfaced, regular oval shape. My PCP is sending me right off the bat to see an oncologist, and I had the CA125 blood test three days ago. I am terribly frightened of getting these results. I have read that postmenopausal women with malignancies usually show high values on this test - well above the 35 normal level; but also that benign tumors and other conditions can cause false positives. I am hanging on to my emotions for dear life, and don't know how I will handle it if the results come back very high. Surgery is guaranteed at my age, with a tumor of this size; but is ovarian cancer a "given" as well? Would appreciate any input.....I'm so grateful to have found this forum. God bless.
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Avatar universal
Thanks for the "heads up" from two of you who know the ropes (to mix my metaphors). I am just very, very relieved to be home again and counting my blessings regularly.

Love you,
Roberta
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408163 tn?1242949501
Roberta,
That is awesome news. I am very happy for you. Sounds like we had similar experiences, except mine was done robotically. I am doing really well for the most part. Wonderful news on the results so far too. Make sure you rest and recover. Don't do too much too quick. Your body will thank you.
Laney
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356929 tn?1246389756
Uhhhh.. Roberta... not more than 3-5 lbs !!! ??That's pretty large to be totin' around !!  Now, you have had the whole enchilada ! A hysterectomy is major surgery as I imagine you're aware of now !! Whole lot different than a laparoscopy or even a laparotomy.. Don't expect too much too soon!. But I'm glad you're feeling better than when you left hospital..  And you know, Dr's most of the time have a "feel" for whether it's going to be good news! I'm sure it will be fine...

And the cats.. that's so funny.. I've had cats all my life and they sure have a sense of when something is wrong don't they.. I'm sure they think they're helping and soothing you when they try to pad all over your stomach !! .

And, sorry to say.... yes.. think it's probably going to be the full six weeks! But everyone is different..you just need to take it slow and easy .. Don't try to rush things.. Healing takes longer internally don't forget!.. Get lots of rest and thanks for the update.. Keep us posted and take good care of you. I know you're relieved that it's behind you

Love,
Sandy
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Avatar universal
Hello - much has passed since I wrote to you all. I think it's all good, but it's really been an uphill experience! My surgery was done early Tuesday morning and I was released from the hospital yesterday at 5 p.m. (Thursday) - so they moved me pretty quickly through the process. I went into it all with a general but limited idea of what to expect (after having had the hernia repair on Oct. 3); now I know how minor THAT one was!! After they took out my large ovarian cyst, both ovaries, the appendix and the uterus in a two hour operation, I had pain in the recovery room that was beyond description, beyond belief. Finally I was moved to a room where they hooked up a morphine drip and the unbearable became barely bearable - and finally just a portion of the original pain remained. Right now I have been home for 24 hours and the pain from my huge, stapled incision is much more managable. I can lie in bed with no pain at all now (and have to be vigilant that our cats do not run across the bed and jump on my stomach - AACCCKKK!!!), but when I sit up and walk, as I must do to keep my circulation going, there are strong stabbing pains in the abdomen. I am told that tomorrow it will be better, and the day after even better, etc. I believe this will be definitely true.

The cyst itself was large in bulk and smooth, but not as heavy as I had anticipated - the doctor said it was probably not more than 3 to 5 lbs. And, they presented me with a lovely color photograph of it!  My minister commented, "It looks just like something you would see in a meat market!" YUCK. I am amazed that such a thing had invaded my innards with every intention of keeping on enlarging. Of course, all the "things" they removed were taken off to a lab for testing, but both of my surgeons (general surgery and ob/gyn surgery) stated that they believe everything was benign. I pray it may be so, and request your prayers that my recovery will be sure and swift.

So, ladies, I believe that the old adage, "No pain, no gain" definitely holds true in my case. I am hanging onto the very optimistic thought that I can now regain my life again - including my former energy and enthusiasm. I truly look forward to this!

To those of you who are scheduled to go through your own procedures, please keep the thought that, "This too, shall pass." Removing the large cyst I had necessitated such a very large incision (which causes much more pain) - hopefully you will not need one so extensive.

You are all in my ongoing prayers. Love to you...
Roberta
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637613 tn?1281039564
Sorry I didn't get to wish you well before the surgery. I haven't been on here much the last few days. Trying to prepare for my surgery next week. I spend some time playing with our granddaughter this weekend. I really needed that...I miss her so much.

You are in my thoughts and prayers and hope that your recovery goes well. I will look forward to hearing how it goes so I will know more as to what to expect. God bless...Lynn
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Avatar universal
Hey Roberta,

Recovery time is different for each patient.  Just pamper the princess and you'll be fine!  Don't rush recovery.

I know this is your day and I pray all is going well.

Deadra
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Avatar universal
Tomorrow is my surgery day to get this great big cyst removed and my hysterectomy performed - have to be at the hospital at 5:30, surgery at 7. Gulp! But I think I'm glad to finally have it set up.

Hotrodgirl, I can surely sympathize with you - I feel exactly like a pincushion after all the many, many blood tests they have done on me, especially today's painful one in the hand, which was a blood screening/typing test so that if I need a transfusion tomorrow, they will know what kind to pipe in! There is a wide range of skill levels in those people who draw your blood (my husband sourly calls them "vampires") - and the swollen, purple inside of my right elbow is the handiwork of one who was very clumsy - OUCH. I am hoping that the last needle I have to endure - at least before the surgery - is the installation of the IV drip.
Now I have a question for those of you who have experienced hysterectomies - is it really a FULL six weeks before you feel up to resuming normal living? I have SUCH a busy job at church and it's getting towards Christmas, the most hectic time of our church year. Do you think I will likely be "out of commission" until the middle of December? Or, after a couple of weeks, can one start working an hour a day, then two hours, etc.? I have a young girl who is my office substitute, but she has limited experience in handling all the stuff that I have to do in the office. Your input will be appreciated - and your forum support has been invaluable to me in going through this process!
Love you all much,
Roberta
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Avatar universal
Thanks for the "heads up," Laney. Sounds like your procedure involved some surprises for your surgeon(s), just like my original hernia operation did! But I am so glad for you that it's over and that you're recuperating. Sending you my blessings for a speedy and complete recovery....
Love,
Roberta
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Avatar universal
Best of luck to you ladies!  

I know surgery is not something I look forward to either....I'm not crazy about needles.  Last year when I had my partial hyster, I started crying when the nurse put in my IV.....44 yo and cried like a baby....I Hate Needles!

Helpful - 0
408163 tn?1242949501
Roberta,
Just wanted to wish you the best on Tuesday. I know about the "butterflies". I just had the same surgery last wed and I think I am doing really well. Mine was robotically and they took it all out. You will do awesome and Im praying for wonderful results.
God Bless you
Laney
Helpful - 0
356929 tn?1246389756
Roberta
    From one "Vintage Lady" to another, I just want to wish you well for your surgery Tuesday.. Did you read the latest post from "Laney"? She went through much the same thing ..even the appendectomy. At the time of her post, she was doing quite well !!  So take heart in that !
    I will be thinking of you Tuesday .. I know everything will just be fine.. please keep us posted when you feel up to it..

Take care,
Sandy
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Avatar universal
When I visited the gynecologist/surgeon Friday, he poked my stomach and said, "Whoa! That IS a big cyst!" In fact, he said there would probably prove to be another cyst on the other ovary as well, and that I have the bulk of a seven-month pregnant woman. Since I have never had children, I joked to my husband that he was soon to be a "daddy" and that we'd "PUT A BONNET ON IT!" He didn't laugh. Humph. No sense of humor, I guess! Anyhow, joking aside, the surgery Tuesday will involve removal of the cyst (after initial draining due to its impressive size), both ovaries and the uterus. Also, they're doing an appendectomy while they're in there, whether I need it or not! I'm in a state of "wild butterflies in the stomach" but am glad to be finally getting this thing resolved. Thanks, Sharon, for the advice on doing something nice for myself - I'm getting a spa pedicure tomorrow and am going to oversee my husband doing ALL the housecleaning - ha ha!
You wonderful women on this forum have been a great help to me in dealing with this uncharted situation with courage and common sense. I know God led me to find you.
Love to all,
Roberta (Canyonbuff)
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Avatar universal
I think that what Sandymac said is correct - since you are a younger woman, results on that CA125 test can vary widely due to many factors, including endometriosis and other "female" conditions -  and therefore it is certainly not a "verdict" in itself. And I also agree with Sharon that if the doctor felt you were truly in danger at this moment - and she could not do the surgery herself until Dec. 11 - then you would have been referred PRONTO to another surgeon!  I will hold you "in the Light" with affirmative prayer that this waiting, too, shall pass and you will become renewed and completely healed.
God bless you - Love, Roberta (Canyonbuff)
Helpful - 0
543028 tn?1282428826
Canyon ... may the Lord fill you with His peace and I pray you find the releif you so richly deserve. amen.  I have been in your shoes as well.  Do something really nice for yourself pre-op (like a spa day) and take your time and relax as best you can post-op.

Steph ... I pray you peace in your heart.  amen I know your mind is reeling right now but for sure worrying won't help.  Actually I would consider it good news if your doctor was thinking about surgery but doesn't feel the need to rush into it.  I hope this helps.
Love
sharon
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356929 tn?1246389756
Please , please do not worry unnecessarily about this.. Let's take it one step at a time.
What was the reason for the Ca-125? You must go and read the American Cancer Society opinion on the CA-125 test . It is not to be relied upon for screening purposes in pre menopausal women for Ovarian Cancer.  There are a number of things that can elevate the results, such as an infection , endometriosis, and lots more. This test is given primarily to those already dx. with Ovarian Cancer to determine how well their treatment is working. There are those with OvCa with low numbers on the CA-125 . Also, there are women with high CA-125 tests that do not have cancer.  

What symptoms are you having? Do you have cysts? Have you even had a Transvaginal Ultrasound? How on earth can your Dr. come to a conclusion based on a blood test that is not necessarily reliable? Please google "CA-125 Reliability" and you will see that the American Cancer Society is not recommending this test in younger women without symptoms as a screening tool.

No Doctor is just going to perform surgery that quickly without further testing..A Gyn/Oncologist is a great idea if there is a suggestion of malignancy,but an elevated reading is not usually by itself reason for surgery.

Why not ask your Dr. -- or another Dr. if you 'd like a second opinion, for a TVUS and go from there. Let's not rush to do surgery yet.. And please try not to worry. If indeed it is endometriosis, that is reason right there to elevate those CA-125 results.
And check out the top right of this page.. There is a lot of information on Health Pages on cysts (if that's what you have) and CA-125 information.

Keep us posted,
Sandy

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Avatar universal
Well I received word back from my doctor today that my ca125 results are elevated.   My doctor says it could be cancerous or it could me endometriosis, I don't know what to believe anymore.  This thing has been a roller coaster ride for me.  She wants to do surgery but when I talked to the receptionist she said the doctor is booked until Dec. 11.  I can't wait that long to know if this is cancer.  She said she would talk to the doctor tommorrow and get back with me.  I want to do surgery next week if at all possible, I plan on calling other doctors and seeing what the wait time is with them.  Also, I plan on finding a gyno oncologist as soon as possible.  I am scared and have to know if this is cancer or not before I go crazy.
Helpful - 0
356929 tn?1246389756
Just wanted to say best of luck on your upcoming surgery..! I know it will all be fine.. Please let us know how you are feeling when you are able..I don't know if you are going to be having the laparoscopy or laparotomy.. but in any eent, check out "Painterchics" 10 things about Laparoscopy...I''ll bump it up for you.. There is good information and a lot of humor too.....

Take care and keep in touch,
Sandy
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Avatar universal
I am humbly grateful to God that my CA 125 test proved negative - and now my surgery to remove this huge cyst is set for next Tuesday, Oct. 21st. I am really, REALLY ready to do this thing.....as Winston Churchill was reported to have said, "When you're going through hell, keep going!!"

Love to all.
Helpful - 0
488689 tn?1337993158
I am also post-menopausal and just had surgery last Monday for what they thought was a cyst that grew after menopause instead of shrinking. It turned out to be a Brenner tumor that would have kept getting larger and the other ovary had a mass that the surgeon found which looked malignant but the frozen section turned out benign. It was an endometrioma that had hardened and had mucinous components. She removed both ovaries and tubes to send to pathology,results came back Friday also benign. There are several types of cysts that can grow as large as yours, and most cyst are 95% benign, so the odds are in your favor. Many women who have had surgery for large cysts have done very well during surgery and the majority have been non-cancerous. It's quite common to have cysts after menopause, I've read some good studies.  Surgeons remove them to send to pathology as it's the only way to tell for certain if it's benign or malignant. The Ca-125 is not that reliable in pre-menopausal women as there are other conditions that give a false positive. In menopausal women it's a bit more accurate, but the test is really a cancer antigen marker for use during chemo to see how someone is responding to treatment. It's all we have right now so it's better than nothing, and  the surgeons will tell you the only real way to know is to get in there and get the biopsies. It's a very good thing your doctor is sending you to a gyn/ono for a consult. They have the expertise and training to make sure you get the best possible outcome from your surgery. Try to take it one step at a time and remember the odds are in your favor.
Valerie
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637613 tn?1281039564
Thank you so much. It was a huge relief. Hope all goes well for you. God bless..Lynn
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Avatar universal
In my church we say, "Look for the Good and Praise It!" - and your great test results are certainly something we can all share in praising. Thanks for writing.
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637613 tn?1281039564
Just a note to say you are in my thoughts and prayers. You have come to the right spot. I just found this site recently while researching my cyst issues. You are right...the waithing and not know is the worst...it is hard not to wonder "what if". The women on here are so supportive and helpful...knowing and having been through same or similar. I was blessed to receive my path results about an hour ago and praise God...all is normal and surgery will go on as planned on Oct 29th. Hang in there...please keep us posted. God bless...Lynn
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Avatar universal
Thanks much for your input - it's so valuable. My husband and and the friends who know about my situation seem to look at me almost as if I were a "ticking time bomb!" So, the common sense statements on this forum are very encouraging and help keep me centered.....God bless you.
Helpful - 0
543028 tn?1282428826
god bless u all
43 and not winning the bread but frying the bacon (well not even that because of cholesterol LOL)
though i am a lil younger my cystic process also ended in surgery praise god
i dont know the size in cm's but in the early 1990's my 80+ yo aunt had a 20lb
tumor removed with no complications
i pray this helps
love
sharon
Helpful - 0
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