large complex ovarian cyst

Posted , 7 users are following.

hi ladies

i just found this wonderful forum 2 weeks ago when i was first dxd w a very large, football size, cyst on my right ovary.

this cyst has taken over much of my abdomen and is up under my ribs. .tomorrow i meet with a surgeon to.have it removed. he is a gyn onc and supposed to be excellent. my question for you all is what should i ask him? should i ask him what all hes going to remove? should i say ok to that?

im 56 and post menapause but ive read that ovaries do continue to produce some hormones that are necessary.

i hae heard my surgeon doesnt have a great bedside manner so i want to have clear concise questions to ask.

you have all been a huge help to me already. since reading your stories i feel confident that this will go well.

still scared lie.

thank you all


0 likes, 19 replies

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19 Replies

  • Posted

    I know I'm not you, but if I were I would have both ovaries removed at the same time, just to be safe.

    My friend had a huge malignant cyst, the same size as yours,mand she had both removed followed by chemo, and eighteen months later is doing really well.

    if you need oestrogen there are gels you can use, but if you are post menopausal, it might not matter anyway.

    Do you know what kind of cyst it is?

    That would be the deciding factor as to what the surgeon decides to do.

    Not surprised you are worried, medicine has come a long way in recent years, just remember that.

    There are lots of new techniques and drugs available,that weren't there a few years ago.

    Hope everything goes well for you.x.

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    • Posted

      thankyou for your comments laura! i have a differenial dx of either benign cystadenoma or maligant cystadenocarcinoma.

      my ca 125 is 60 and a top ob gyn here in the states didt think was was so high considering how big the cyst is. i was also told they wo t be positi e until its out .

      i am leaning towards letting all my parts go. i never want a fear like this ever again


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    • Posted

      Hi stacieh I feel for you, ive been there. I'm sure your gonna be fine - I had a 20cm x 20cm cyst on my right ovary three years ago almost , like you it filled my whole abdomen under my ribs and I had difficulty breathing. It was such a relief to get rid of it, they drained three and half litres of fluid from ovary which was borderline so it was fine, even huge cysts don't always mean they are necessarily malignant - I was convinced it was but was so relieved it wasn't. Do you have any idea when your surgery might be and how long you will have to stay in hospital ? I only stayed in overnight and went home next day - when I came round in recovery I had no pain at all, I had a catheter in which was fine and within a few hours I was out of bed and moving around, slowly but it was ok. I agree with you I would have the whole lot taken away and be done with it just to be safe. Good luck and keep us informed, deep breath it's gonna be ok x

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    • Posted

      Let them take whatever is necessary, they are no use to you anymore.

      The surgeon will have a good idea just by seeing the cyst, whether it looks good or bad, but as you will know it goes to pathology anyway.

      He may also remove part of the omentum, if you google it.

      Ask everything you can think of, it's your best chance to find out.x.

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    • Posted

      hi lou

      i meet with a surgeon tomorrow so im hoping to be scheduled within the following 2 weeks. the scheduler said that was a reasonable expectation. as for how long i'll be in, i have no idea but i will ask that tomorrow. i just want it gone and behind me.

      but so nervewracked with all the tests and waiting..


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    • Posted

      thank you laura!

      i have read these threads obsessively since i found the forums.. there is so much good info and i will ask everything i can think of.

      i hope i dont have to wait too long for the surgery. im terribly nervous.


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    • Posted

      Hi stacieh,

      Thats good as the sooner the better then you can move on and put all this behind you. I know exactly what you mean about being anxious and worrying as I was beside myself with fear, dread and panic but it was fine I promise you - it's natural to be worried but just remember you will be very well looked after and monitored, and there will be no pain when you wake up - you will go to sleep and when you wake up it will be all over and you can start moving forward. Do you mind my asking how your cyst got this big before being diagnosed ? mine was misdiagnosed as constipation and Middle aged spread for months by three different doctors until I demanded a scan ! How are you feeling in yourself ? p/m me if you like x

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    • Posted

      i took a job @ 3 years ago and the weight started to slowly climb..i just thought it was bc of being mostly sedentary and too many snacks..last year tho i jumped 2 sizes and one day at work i just felt awful. when i pressed i felt a very hard, rigid stomach.

      there was some pain on my right side but i believed it was the kidney stones i had been dxd with years ago. i started researching what could it be and saw my pcp as soon as i could. he thought, god bless him, i should join weight watchers which i did. but he ordered some labs and scans as well.

      as soon as i lost 10lbs, i saw the internist who sent me straight for a ct. this all happened very slowly and hard to id symptoms..looking back , i can see it plain as day but when you're in the thick of life and work it is too ez to pass things off.

      i hope it is fixable ad that i havent waited too long

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  • Posted

    Hello.  I also had a football sized cyst on my left ovary.  Prior to surgery the doctor said it had a 40 percent chance of being malignant, however they wouldn't know for sure until they opened me up.  I was lucky.  My growth was a benign mucinous cystadenoma.  Prior to surgery the doctor and I discussed my reproductive organs and how both outcomes should be managed.  He explained to me that most malignant cysts enter the ovaries through the fallopian tubes.  If he suspected cancer, he was going to remove both ovaries, part of the stomach and my tubes.  I am 43 years old and decided that if benign I just wanted the left ovary removed as the other was healthy and due to decreased risk, I asked him to remove both tubes.  I decided to keep the right ovary so I could enter menopause naturally and when time appropriate (although it's my understand that it could be as early as five years earlier when you only have one ovary).  All that said, I would discuss with your doctor what you are comfortable with.  

    My hospital stay was three days.  I couldn't take pain medication due to allergies so the hard part was the first three weeks.  It might also be difficult for you to lie on your side or stomach for at least two monts.

    You will feel much better once the football is out.  All the best to you and please don't worry about asking the doctor questions, this is your body and health.


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    • Posted

      thanks rhonda

      i have a list of questions at this point and will ask them all.

      its just my head is spinning and im so scared.

      happy to hear everything worked out for you.

      i pray the same for me . im happy to hear you only had to stay in for 3 days.

      i will post tomorrow what the gyn onc says.

      wish me luck!


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  • Posted

    Isn't it scarey what can develop in our abdomens and get so large before we realize something is wrong. I had an gyb/onco also. Fabulous surgeon who correctly ruled out Cancer b4 I had surgery. My regular gyn found my cysts ( kids soccer ball sized). Don't you love sports analogies? He told me to get my affairs in order and move up my daughter's wedding date. How's that for bedside manner. I too went from annoying bloat and constipation (severe) to scheduled surgery in a 2 week window.

    Fearing the cancer I chose a specialist surgeon but he also had a very respectful bedside manner and gives patients as much time as they need for discussion. Not the usual sterile, dismissive, godlike attitude if other surgeons I have met.

    First make a list of your questions.

    What complications, if/any does he anticipate? Bowel/other organ involvement.

    What is likelyhood of hysterectomy?

    (I ended up with surgical menopause which was not fun and I didn't know he planned on a hysterectomy until I signed the admit papers on the day of surgery). I had expected an ophrectomy and had asked him to save what he could. I too, was concerned about total loss of estrogen. But what I didn't know was a result of uterine removal and the dramatic impact on relations. W/o a uterus the fireworks are reduced to a whisper.

    What type of incision does he plan?

    How large?

    (My surgeon, I learned post surgery, always uses a full length abdominal incision. However, in my case he only went pubic to just below belly button.) This made my getting up/down in/out of bed much easier. He found severe, undiagnosed endometriosis was the root of my troubles and did a full abdominal disection to remove all the tissue growth. He also saved one of my kidneys which had become strangled by it. All from the short incision. The nurses all said I was truly lucky because he chose my comfort and recovery over a wide open incision much easier for him. Yay! Based on where yours is located it would be good to know so you can be mentally prepared. I also learned he anticipated a bowel resection (not necessary, yay) but I was not mentally prepared for that possibility either and I could've woken up too much more significant issues.

    What is anticipated post surgery plan?

    Length of hospital stay?

    I was in for 5 days, woke to a morphine pump. Had to transfer myself from surgical gurney to hospital bed. (LAZY NURSES!! My Dr. was furious) never hit the happy button on the pump so Dr. took me off morphine on 2nd day. Who knew you could have withdrawal symptoms after only one day. I found Toredol worked much better for me. I was on fluids only IV for 3 days, no food until evening of 4th day liquids, jello etc. Had to pass some sort of stool b4 release which happened 5th day afternoon. I had an excellent recovery. Only took pain meds at night to sleep. Walked everyday, slowly and was driving and sleeping normally within 2 weeks. Went back to work in 8.

    Does he anticipate one or both ovaries being removed?

    Even though you are post menopausal you will may re-experience a return of menopause symptoms since your estrogen level would change. Each women is different so time will tell. I experienced my first hot flash the night I got home. Thought I had a sudden onset fever. Still having hot flashes 12 yrs. later. Ugh. Due to endometriosis Drs. had not recommended hormone replacement for fear of regrowth. I had every symptom on the checklist hit all at once but most had resolved within 6 months. I was 49 and still very regular b4 surgery.

    All in all, I was lucky. Great surgeon, scar is not noticeable and he only used staples externally. Only have a faint ghost line. I do still have issues with some internal anchor sutures he used on the abdominal muscles. They never dissolved as they should have. They are uncomfortable if I happen to bump one (there are 3) but otherwise no issue. Menopause onslaught wasn't fun but I've learned to deal. Weighed 10 lbs less day after surgery, bonus!

    I have found most Drs. like it if you bring a list. It is concise, shows forethought, and respect for their time. But don't let him dismiss you if he's one of those god complex ones. Your feeling comfortable with expectations will leave you much less anxious prior to surgery and hopefully no surprises after.

    Hope this helps, GOOD LUCK and speedy recovery!

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    • Posted

      thank you for writing of your experience .

      this has been wretched for me all the way. my reg dr strongly insinuated cancer so i've been petrified. hopefully the surgeon will be able to rule that out this morning. fingers and everything crossed.

      your prompts for questions were very helpful too . i would not have thought to ask about other organ involvement among other things...

      normally im not such a baby or fear based as i am over this but we've been through cancer with my husband and maybe i have a bit of ptsd.

      i am going to get my mind right and march off to my appt.

      thank you again and i hope to have some positive news and a surgery date in a few hours


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  • Posted

    thank you to everyone who shared their stories with me. my surgeon assures me he can get this out laparascopically in 2 hrs and ill be home same day. there is a small possibiliry that plan could change depending on if he sees something that was not visible on the ct but he said not likely.

    i will be having both ovaries and tubes removed and he is planning on leaving my uterus. he wasnt terribly concerned at my ca-125 being 60 considering how large the cyst is.

    anyway, im delighted that this will be done and over on july 12 and thrilled that it isnt going to be a big open abdominal surgery !!

    i will post again after its done.

    love to all you brave and fabulous women.


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