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Old 05-04-2013, 12:44 AM   #1
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Ovarian cysts and surgery risks

Hi all,
This is my first post, and I hope someone can help me. I am really at odds with my scheduled upcoming surgery. I had an MRI about a month ago for my lower back. The back doc showed me this rather large circle that i honestly thought was part of the mri machine just blocking me out. Turns out it was a mass of some sort he couldn't say what or where but advised me to see an ob gyn asap, which I did. As I don't have an gyno of my own, I went to one my sister advised me to see and she looked at the MRI and then did an intervaginal sonogram which revealed cysts in my ovaries and what she thought was a fibroid tumor in my uterus. She used language like "look at that little ovary, it has a couple of nice black eyes punched in it" etc. Nothing very helpful or clear to me. I was freaking out a bit and kept asking questions, as this is all so new to me. I just turned 46 but I've never had surgery in my life and have always been fairly healthy besides back issues. Anyway, she told me to go down the hall to get blood work and that i needed to schedule surgery because she felt she needed to remove the right ovary thru laproscopic surgery. I asked why, did she think it was cancer? She said the blood tests would tell us more. The blood tests came back over a week later, and my CA125 result was only a 9 which they said was very low. It seems to me that would eliminate the possibility of the tumors being malignant, so there would be no need for surgery. When I called her assistant about that she said that the notes said that she would be looking at the ovary but that she would try to get the cysts out and if she couldn't she would remove the whole ovary and maybe the left one as well, but she couldn't know until she got in there and looked around. I was not comforted by this information, needless to say, any surgery can have risks and I'm afraid of blood clots or bowel perforation or issues with the general anesthesia. Can someone advise me, does this procedure seem necessary when I don't really have any issues other than more frequent need to urinate and some rather painful periods?

 
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Old 05-04-2013, 08:12 AM   #2
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Re: Ovarian cysts and surgery risks

Well, the symptoms of ovarian cancer are usually vague. That's what makes that kind of cancer so dangerous. It isn't discovered until too late a stage to cure.

That said, it does seem to me like you're getting the rush act. I wouldn't be comfortable with that, either. Definitely get another opinion... or even two. Then you can feel comfortable accepting the majority two out of the three. There are some doctors who use surgery to their financial advantage, rather than to the patient's health advantage... If you know what I mean.
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Last edited by midwest1; 05-04-2013 at 08:16 AM.

 
Old 05-04-2013, 09:12 AM   #3
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Re: Ovarian cysts and surgery risks

I started looking for someone for a second opinion yesterday and will try to get it scheduled for next week. I hadn't thought about a third opinion, but that is probably wise. Thanks so much for your help.

 
Old 05-04-2013, 11:00 AM   #4
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Re: Ovarian cysts and surgery risks

Sorry for the lengthy reply but this is VERY similar to what happened to me. I've learned SO much since then. There are definitely some red flags and it's good you listened to your intuition. I wish I'd listened to mine when my gynecologist of 20 years rushed me into surgery for a suspicious looking ovarian cyst. Although it was benign on frozen section (done while I was under anesthesia), he and two gyn residents proceeded to remove my other ovary, fallopian tubes, and uterus. This was in direct conflict with what the oncologist he sent me to for consultation recommended yet my state's medical board ruled that my gynecologist did nothing wrong. I have been suffering the many adverse effects of female organ removal (hormonal/endocrine, anatomical, and skeletal) ever since.

There are a couple of things that stand out.
1) She didn't give you any specific information about the cysts
2) She didn't discuss any other treatment options (such as monitoring them, birth control pills to shrink them)
3) She did a CA125 test which isn't accurate in diagnosing ovarian cancer especially in pre-menopausal women. You can have a very high result and not have cancer or a low one and have cancer.

Most ovarian cysts are benign in pre- and post-menopausal women, even ones that appear suspicious. It would be helpful to get a copy of the ultrasound report that describes the cysts. That should tell you a lot about their characteristics. There are certain characteristics that make them more or less suspicious or even not at all suspicious. Solid matter and septations are concerning but, again, even most of those are benign.

Once you have the report, you can do some research to prepare yourself to ask the right questions of other doctors. Type of cysts and size will dictate whether or not you even need surgery. Many cysts resolve on their own and may just require some monitoring. If you do need surgery, it's best to keep BOTH ovaries. Removing any part of the "reproductive" system can cause hormonal problems and even throw you into a menopause that's similar to ovary removal (surgical menopause). So you'll want to seek out a surgeon who does a lot of cystectomies (cyst removal) for the best possible outcome. And if ovarian cancer is a possibility, have a gynecology oncologist do the surgery.

Fibroids tend to have a growth spurt shortly before menopause and then shrink afterwards. If they aren't causing problems, there's no need to do anything. The back pain could be caused by the fibroids and/or the cysts. There's a surgery called myomectomy to remove fibroids but hysterectomy is commonly done for fibroids because it's easier and more profitable. Unfortunately, the uterus is treated as if it's merely a baby bag when it has so many other functions.

In addition to getting the u/s report, you may want to get a copy of the MRI report and all your records related to this diagnosis. Doctor's notes can be quite telling and may give more insight into your diagnosis as well as this doctor's "modus operandi."

Would be interested in hearing what all you find out and how this progresses.

 
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Old 05-04-2013, 08:50 PM   #5
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Re: Ovarian cysts and surgery risks

I can't tell you how much I appreciate all the time you took to give such a detailed reply. It just made me gasp a sigh of relief. What your saying about being rushed is exactly how I feel. This is my body and I feel like this doctor is just trying to make all the decisions without me, and hasn't even bothered to make me feel at ease with it. I asked her assistant if I could come back for another talk about it, and she said, sure you can come for a preop appt the week prior and she will answer any questions then! So frustrating, letting it go right down to the wire as if the surgery is just a given. Well, I'm going to do as you advised and put the whole thing on hold. I also got a lot of rudeness from the scheduler who told me the doctor only has two days reserved for her surgeries and I explained I would need to do it on one of my sisters days off since I will need someone to drive me and help me out after the surgery. She called me back three times so exasperated and rude about how much trouble it was. If surgery is indicated I think I will seek out an expert in laproscopic surgery and an obgyn as you suggest. I'll start getting the reports together, and get my MRIs and report back from the chiropractor and start making calls. I just don't want to put myself through surgery with all the risks, MERSA/blood clots/bowel perforation/hormone issues/anesthesia side effects etc if I don't really really have to.
I can't thank you enough, and if you don't mind I may be posting again with more questions. You are incredibly insightful and your past experience certainly serves as a warning to me.
Sincerely,
Karina

 
Old 05-05-2013, 08:07 AM   #6
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Re: Ovarian cysts and surgery risks

I'm glad I was of help. Reserving two days a week for surgeries is a lot - another indication that this doctor is surgery happy. Most gyns have only one day reserved for surgery and it seems most of them do a lot of unwarranted surgeries (including organ removal) based on my connections with other women as well as health care professionals. The rush to get you in and the rudeness are definitely red flags too. I recall one woman saying it took her 8 opinions to finally be told that she didn't need a hysterectomy.

It sure would be nice if you could find out up front what surgeons use organ-sparing treatments and get your second opinions from them. I'm not sure how to go about doing this. I'll cross my fingers that your records show that these cysts are simple in which case they should go away on their own and you won't need to get second opinions for surgery! Post back when you get your records. You may get some push-back when you request them but they have to provide them. When I requested mine after my surgery, they told me that my doctor had to review them first. It took about a month so I wonder if he modified them.

 
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