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Old 03-12-2013, 08:44 PM   #1
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23 cm ovarian cyst, confused and scared

They found a 23 cm cyst while doing an x ray for lower back pain, I had a follow up visit where they didn't do anything except take blood, but I don't know what for, I can't get a CT until the referral goes through and I can't go to a gyno until after the CT scan, per my insurance chain of command. I'm really nervous, the doctor didn't say much other than I only need one ovary. What should I expect, will I need surgery? Should I be worried about cancer? I'm so confused. Also I have gone to the doctor the past year for weight gain, constant fatigue, constipation with blood in stool, and lower back pain....always being told this or that...could this be connected? Thank you so much.

 
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Old 03-13-2013, 08:18 AM   #2
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Re: 23 cm ovarian cyst, confused and scared

Are you sure it's 23 cm and not 2.3 cm or 23 mm?? 23 cm is about 9 inches which is a very large cyst. You may want to double check with your doctor or get a copy of the x-ray report to be sure.

Ovarian cysts are very common, most are benign and most resolve on their own. However, if it IS 23 cm, it will need to be removed. But it would still more than likely be benign because ovarian cancer is quite rare if you don't have a family history.

You want to keep both ovaries if you can because if they remove one, it can cause hormonal problems including early menopause which is associated with increased risks for other health problems. There's no guarantee that your other ovary will pick up the slack.

You may need to "doctor shop" to find a doctor who will remove just the cyst (cystectomy). If it IS 23 cm then I doubt you'd be able to save the ovary. I don't know who accurate x-rays are in diagnosing the source of the cyst. It's possible it's near your ovary and not coming from or encapsulating in which case it seems your ovary would not have to be removed.

Has anyone said anything about transvaginal ultrasound? Those can usually see ovarian cysts fairly well and don't output radiation. CT scans have a high rate of radiation and are usually much more expensive than u/s.

I made the mistake of trusting my doctor and he removed both ovaries, my uterus, and fallopian tubes when all he should have done was remove an ovarian cyst which frozen section showed to be benign. My health and quality of life declined immediately post-op. It's been 7 years and I regret it daily.

Best of luck to you. Please let us know what you find out.

 
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Old 03-13-2013, 08:46 AM   #3
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Re: 23 cm ovarian cyst, confused and scared

Thank-you for replying. Yes he said 23 cm, and then made a size with his fingers to be larger than a softball:/. I can't get an ultrasound until the CT scan, according to the doctor which he said is according to my insurance (I am substitute teacher and am not offered insurance and I currently have medi-cal:/ ). I will keep you posted, thank you.

 
Old 03-13-2013, 09:09 AM   #4
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Re: 23 cm ovarian cyst, confused and scared

I had a 9cm cyst which is about 3-1/2 inches. That equates to the diameter (length across NOT around) of a grapefruit or a softball. But I googled the size of a softball and the circumference (distance around) is 11 inches so maybe they told you the circumference of the cyst and not the diameter? I thought they usually defined the size by the diameter. Odd that medi-cal would pay for a more pricey CT scan versus a transvaginal u/s but maybe it's common to do both so they just skip the u/s since CT shows more. I had both done but it ends up the CT wasn't really necessary because the u/s showed the size and type of cyst (complex).

 
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Old 03-13-2013, 10:58 AM   #5
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Re: 23 cm ovarian cyst, confused and scared

I thought the CT was odd too...I don't really want to do this waiting game he actually said 23 'sahntometers' which after Googling I guess some medical people say either or. I know 23 centimeters is about 9.5 inches, I don't know if he meant around or long, but he also said 'very large'. I'm hoping it is just nothing

 
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Old 03-23-2013, 02:19 AM   #6
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Re: 23 cm ovarian cyst, confused and scared

Hang in there llsmom. I have a friend who had a cyst/mass the same size and all was well. Thinking of you.

 
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Old 03-23-2013, 07:30 AM   #7
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Re: 23 cm ovarian cyst, confused and scared

I had a 19 cm cyst that turned out to be a benign fibroid. Had a hysterectomy and am now feeling great. Good luck!

 
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Old 03-24-2013, 09:56 AM   #8
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Re: 23 cm ovarian cyst, confused and scared

Hi Lismom08,

I just had laproscopic surgery on Wednesday to take out a 24.5 cm cyst (doctor said 10 1/2 inches), they took out 3 Liters of fluid out of it and then they found another dermoid cyst as well, took that out along with both ovaries. I'm past menopause and I was worried that could be cancer-past menopause, no kids--

But when I went to the gyno/oncologist for the first meeting, she said that normally the bigger the better in that usually the bigger ones are not cancerous and she was right no cancer.

I know what you mean about the fatigue, also had a breathing problem, not sure, but I think it was from how big it was. Don't have it now. It started with a sharp pain in lower right abdomen that went around the side to the middle of the back.

The doctor sent me in for a transvaginal ultrasound, but they did the transabdominal first seen it and didn't want to do the transvaginal as they didn't want to rupture the cyst. My PCP didn't want to put me through a CT scan if she didn't have to so that is why the ultrasounds first.

I'm suprized that even after draining it they were able to do laproscopically but glad they were able to.

 
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Old 03-25-2013, 01:16 PM   #9
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Re: 23 cm ovarian cyst, confused and scared

Thank-you all for replying. I had the CT scan last Wednesday and called on Friday about the results but was told the doctor was at a conference and he had a lot of work on his desk and probably wouldn't get to it until the end of of this week:/

 
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Old 03-27-2013, 04:56 PM   #10
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Re: 23 cm ovarian cyst, confused and scared

Well, I have news now, but I am still confused...They 'thing' is 13 cm...I had the CT done and had to go to the ER, per recommendation from my doctor, for extreme abdominal pain. I had a transvaginal ultrasound done and they could not locate my left ovary, assuming due to the "mass", so thay had to take ultrasound pics of it over by abdomen. The reuslts just said it was 13 cm, probably a cyst, and to go see a gynecologist immediately. I made an appointment with my doctor to get the CT results today. The CT results say the cyst is 13.5X16 cm in axial planes and 16 cm in craniocaudad dimensions. I'm glad it isn't 23 cm. It also says "Internal density is homogeneous without evidence of speta or solid tumors".....That is good right? Also "It is unclear which ovary it arises from because of its midline position. Uterus appears unremarkable and shifted towards right, suggesting that this could be a left ovarian mass.". The impression says :
"1. A large cystic midline structure arising from the pelvis extending into the abdomen. This likely represents and ovarian cystadenoma, and may be arising from the left ovary. Please correlate clynically. (Yes, that is the side where it hurts)
2. No other intra-abdominal mass, fluid, or adenopathy is seen.
3. Pelvic structures are also otherwise unremarkable.

I asked the doctor if they could rule out cancer and he said no. He said they might have to do surgey, he wasn't sure. The ER doc said that the radiologist wouldn't commit to saying what it was. I thought that the CT scan could see if it was fluid or not? My abdomen hurts They gave me vicodin which helps the pain, but makes me extremely nauseous. I'm not supposed to do a lot of walking (uh, I'm a single mom with a 5 year old, and I'm a substitute teacher, I do a lot of walking lol)

 
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Old 03-28-2013, 07:53 AM   #11
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Re: 23 cm ovarian cyst, confused and scared

Quote:
Originally Posted by llsmom08 View Post
It also says "Internal density is homogeneous without evidence of speta or solid tumors".....That is good right? Also "It is unclear which ovary it arises from because of its midline position. Uterus appears unremarkable and shifted towards right, suggesting that this could be a left ovarian mass.". The impression says :
"1. A large cystic midline structure arising from the pelvis extending into the abdomen. This likely represents and ovarian cystadenoma, and may be arising from the left ovary. Please correlate clynically. (Yes, that is the side where it hurts)
2. No other intra-abdominal mass, fluid, or adenopathy is seen.
3. Pelvic structures are also otherwise unremarkable.
"Internal density is homogeneous without evidence of speta or solid tumors".....That is good right?
For one, I think "speta" is probably supposed to say "septa" (plural of septum). Yes, this is good in that without septa and without solid matter, the chances of it being cancerous are slim. And cystadenoma is mentioned as the likely diagnosis. That's what mine was, more specifically a mucinous cystadenoma. Those are almost always benign. Mine was benign but my doctor overtreated me and removed everything unnecessarily 7 years ago. My health and quality of life have suffered horribly ever since.

If this cyst is on/in the ovary, the weight of it could cause ovarian torsion which cuts off blood supply to the ovary causing intense pain and possibly loss of the ovary. That's probably why they don't want you to be too active.

 
Old 04-10-2013, 06:13 PM   #12
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Re: 23 cm ovarian cyst, confused and scared

Well, I had my appointment with my gyn yesterday, the didn't do another ultrasound but she looked at my ct scan, previous ultrasound, and xray and she sent in a referral for surgery:/ She did a pap and felt my abdomen and said since it is so big they probably won't be able to do it laproscopically. They did a whole mess of blood work today, like CA125, AFP tumor marker blood test, and another one (I don't remember what it was called, but when I googled it said it tests for tissue damage?) as well as thyroid, diabetes and HcG.....
Also, my period is late and I haven't been sexually active in years, is this normal?
I am in a lot of pain sometimes and I am kind of looking forward to no being so anymore. I am always tired How does this surgery go? What should I expect?
Thank you again

 
Old 04-10-2013, 07:27 PM   #13
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Re: 23 cm ovarian cyst, confused and scared

Not sure about those tests except CA125. It isn't accurate in diagnosing ovarian cancer in premenopausal women. So don't freak if it turns out high. I have a friend who had a super high level and her cyst was benign (like mine). If the frozen section done while you're in the operating room is benign, then they shouldn't need to remove any organs (except possibly the ovary with the cyst if it can't be saved). I guess you don't know the specifics of surgery yet, like if it will be a cystectomy or unilateral oophorectomy (ovary removal)? Make sure the consent form is clear on what's being removed.

My surgical recovery wasn't a big deal. It was the loss of my hormones and uterus that caused all the problems. Since they probably can't remove the cyst laparoscopically, the recovery will likely be about 6 weeks. Let me know what more you find out.

Last edited by STLouisgal; 04-10-2013 at 07:34 PM. Reason: overlooked one of poster's statements, revised my response accordingly

 
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Old 04-11-2013, 03:29 AM   #14
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Re: 23 cm ovarian cyst, confused and scared

Quote:
Originally Posted by llsmom08 View Post
She did a pap and felt my abdomen and said since it is so big they probably won't be able to do it laproscopically. Thank you again
My cyst was 11" x 8" by 2" thick, they drained 4L of fluid (according to surgery report) and they were able to take it laproscopically. They kept saying it was the right ovary that had this, but to come find out the left ovary was where the right ovary should be and the right ovary was pushed up in the abdomen cavity (this was the one that was hurting) So just because it's big, as long as it's fluid filled I'd make sure they tried this before, if it doesn't work they can always do a regular surgery.

 
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Old 04-23-2013, 09:13 PM   #15
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Re: 23 cm ovarian cyst, confused and scared

I had the pre-op appointment today, all of the cancer screening markers came back negative/normal as well as thyroid, pap, and all of that††My appointment is may 24, and they said they will attempt to do a laproscopy and see from there or as she said "take a peek", she said possibly laparotomy.††She sais she wants to try and drain then go from there, I asked if they could still biopsy it and they said they will most likely test the cells...they wouldn't do that surgery and not biopsy anything would they?††I feel really good that all will be well, but I still want them to check it out.

 
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