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11 cm cyst, kind of spooked 11 cm cyst, kind of spooked

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Unread 06-12-2003, 09:53 PM
11 cm cyst, kind of spooked

Hello everyone,
I am new here at the site. I have been reading alot for the past few days.
I hope I am posting in the right place, might should be under pre-op? I am posting here though, as I am concerned about cancer.

I'll try not to write a book~ ;-P

Last week I had acute pain that took me to my OBGYN's office.
On pelvic exam, the NP noted abnormal. Could feel something at the top of my uterus [or so I think it was, she was moving it around right below my belly button].

Had internal and external sonogram done. It showed a 11cm cyst on my left ovary. The tech said, she could not 'find' my left ovary, I presume because the cyst was so large it had it covered?
I also have several fibriods on the inside and outside of my uterus. [gosh hope I am spelling all this right!]

The NP flaged my OGGYN and took me right away into his office after I had had a Ca-125 bl test.
Needless to say I was rather in shock.

He said right away the cyst and ovary had to go.
I told him I wanted the uterus gone then also, he agreeded since
I have had a lot of problems over the years. Re: heavy periods, large clots, and SEVERE cramps.
Last year I also had a bad pap and had a leep done on cervix.

He told me he did not feel it was cancer but could not be 100% until the surgery and it was biopsied.
My Ca-125 come back great it was 7.7, so that was good news, although I have read that is not always a for sure thing.

I have kept cyst's on my left ovary since I was in my early 20's. I am now 42, [43 this yr].
My testosterne level is elevated, [not real badly] and I have gained a lot of weight inspite of diet.
My B-12 level bottomed out and I am on weekly B-12 shots now, just finished the round of everyday for a week. Talk about a pain in the arse! ;-P

And what is up with this facial hair??? ARGH! I know it is normal to some extent, but ladies this is unreal. I could wax and then rewax two days later.

My Mom had uterine cancer when she was around my age, so I wonder if this might be what is kind of spooking me?
My last sonogram was done about 2 years ago, it showed a small cyst on R ovary but no fibriods, which I now have. From what I have read the fibriods are of no concern except for the discomfort they can cause.

Okay, so here is what I want to ask;
I would like to hear from anyone who has had a cyst this large and if they have ever had a 'surprise' after surgery to find out it was cancer?
Also, I would like some reassurance that I am not over reacting by wanting a total hist. done? [ I did ask he leave the right ovary if it looks okay]

So far my surgery date is for 7/9. My DH has just had a wrist fusion done, so am trying to give long enough for him to heal so he can help see after me.

I have read a lot of recommendations on this site of having an onclogist [sp?] present during the surgery. I have yet to discuss with my GYN if there will be one present. Is this only recommended if cancer is strongly suspected?

Well it seems I did manage to write a book, although I did not mean to. Thank you for taking the time to read this and thank you in advance for any replies.
Debbie [withope]
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Unread 06-12-2003, 10:58 PM
11 cm cyst, kind of spooked

Hi, Debbie and welcome to a really great site. Even though you're still a "lady in waiting" you've come to the right spot! There are just the most wonderful, honest, caring women here.

I had a 10.5 cm mass with multiple cysts on my right ovary, but my CA125 came back at 267. My gynecologist warned me that if the blood test came back elevated, she'd refer me to a gynecological oncologist. So, I went into surgery (with both my gynecologist and the gyn oncologist participating) assuming that they'd find cancer, which they did. So, it wasn't a surprise for me.

I don't think you're being overreactive AT ALL! I think you're being smart by supporting a decision to take out your uterus, too. Frankly, I can't tell you how grateful I was when I considered that they could have found cancer in many other organs that I REALLY need to live. I don't *need* anything they took out with the hysterectomy. Continue talking about all options. Keep asking questions. Stay in touch and let us know what happens.

Good luck, Debbie withope! and God bless.
Unread 06-13-2003, 08:13 AM

Your CA125 is excellent, although as a pre=diagnostic tool not always accurate. Are they going to do a CT scan too? The CA125, ultrasound and CT scan put together a good picture of what may be going on. Yes, you want a gyn/onc doing the surgery if there is the slightest chance it could be cancer. These Drs. are the best and know what all to look for, remove and sample. Hopefully, when you come out of anesthesia, you'll hear "benign." Now hit the pre-op board and you'll learn a lot there and come back often when you have concerns. Ellen
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Unread 06-13-2003, 08:42 AM
11 cm cyst, kind of spooked


In answer to your one of your questions i have to say that i went for an operation to remove a cyst the size of a grapefruit from my ovary. This was done successfully with a normal blood tumour marker test (125) Unfortunately the path report said otherwise and a few days later i had to have the 'lot' out. I had endometriosis around the cyst which was on the ovary and the cancer was found in the endo. Now before you start to panic this apparantly is rare and my gyne was shocked as i was! Needless to say i am fine now with no further treatment. You could have the operation to remove the cyst and ovary and then wait for the pathology reports which hopefully will be fine or as you say you could have a hysterectomy performed. If you are happy with having a total hyst and your dr recommends this then i should have it done.

Unread 06-13-2003, 04:15 PM
11 cm cyst, kind of spooked

Hello Maureenie, Margaret, and SheilaUK,

I can not thank you enough for your replies. :-)
Although it it sadden's me that the experince of cancer first hand for you is where I gain my answers. ((((hugs)))

No, I have not had a CT scan ordered. Only the sonograms and bl work.
My GYN, said they'd do a frozen section for biopsy while I am under. [If I remember right]
I am going to make an appt. to go back in and talk to him some more, now that I have got my wits about myself a little better.

The way I am thinking...is that since he said he would have to do abdom. incision to remove the ovary and the cyst anyways, best to go ahead and have the uterus removed as well.
I sure will not miss it! ;-P

Also the plus of having the cervix gone, since I have already had a leep done on it, will give me the relief of not haing to worry about the 6 month paps and it coming back.

I'm not going to lie here~ the thought of having the surgery done makes me sick to my stomach. I have had surgery's before so do know what I am in for. argh, ouch!
The thought of having to go back in and do another if anything was found, makes me nervous. So think I'll stick to my guns on the hist.
He did say he would leave my right ovary if everything looks okay.

Again I can not tell you how much I appreciate your replies.
It reassures me to know I am thinking on the right track and not over reacting.
I believe in hitting the books and doing as much research as a person can, that it is important to be an advocate for our own health.
That is how I found this site, and am sooooooo happy I did!!

My prayers are with all of you.

Debbie [withope]
Unread 06-15-2003, 08:23 PM
11 cm cyst, kind of spooked

Dear Debbie,

My best wishes to you for your forthcoming surgery. Just to offer you a bit of hope: I had a 14cm tumour on my left ovary and a CA125 of 80, yet my pathology report came back clear of malignancy. Your very low CA125 suggests that it is very unlikely to be cancer. I will pray for a good outcome.
Unread 06-16-2003, 09:14 AM
11 cm cyst, kind of spooked


I was in the same position as Latina, only with a CA-125 of 200 and a complex cyst of a similar size to yours. Severe endometriosis can also present like ovarian CA, complete with the CA-125 levels.

I see from your post that you've had some other "things" going on: the heavy bleeding, clots, etc. could be due to adenomyosis, a cousin of endo where the endometriosis infiltrates the muscular uterine wall and wreaks havoc. It's very difficult to diagnose pre-hyst, but the pathology report will tell them that.

Also, the testosterone and weight gain can be associated with polycystic ovarian syndrome (PCOS). There's an excellent website for PCOS called Soulcysters.com which may help you sort this out. Metabolic syndrome is very common with the other endocrine changes of PCOS...and if that's what you have, you may want to seriously think about what to do with that remaining ovary. I faced that "choice" but opted for removal of both, mostly because it was clear to me, having made a cyst that size once, that I was at higher risk for repeats. Since I have a strong family history of cancers, and had severe endo, I elected to have both ovaries removed, and have not regretted that choice. The hormones took and still take some "tinkering" but it was worth it!

I do hope you're having a GYN-oncologist do this surgery, as your friends here have recommended. They are not only experts in cancer situations; my organs were all fused together and "fastened" to the rectal wall and bladder. They can do any repairs in that area that would be necessary, without having to coordinate schedules with a general surgeon or urologist if difficulties arise thanks to adhesions or endo. So, even though the CA-125 is low (and hopefully indicates that no cancer is present), with the history of LEEPs, etc, a GYN-Onc will be able to do anything you might need.

Good luck with this, and keep us posted, OK? We'll be here to hold your hand, either way.


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