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Complex Ovarian Cyst

I was diagnosed with an enlarged ovary with a 5.96 x 3.33 cm complex cystic and solid mass.  The pap was normal.  CA125 and CEA was normal.  Two fibroids in uterus.  My main symptom is pressure on my bladder.

The doctor insists on taking everything.  This is what she wrote down:
exploratory laparotomy, total abdominal hysterectomy, and bilateral salpingo-oopharectomy.  This seems extreme for one enlarged ovary.  She said if she took the ovary only that cancer cells could leak out into my body if it was cancerous.  Any ideas?

I don't want the hysterectomy.  Am totally stressed, upset, and miserable.  I am getting a second opinion and trying to research on the computer.
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Avatar universal
I went for my second opinion.  App't was with a nurse practitioners, and when she saw my medical records she told me that the ovary would need to go.  I showed her what the first doc had written down so she consulted the ob/gyn doc.  The doc wondered what was worrying me so.  So I went over my story again.  She told me just the one ovary needed to be removed.  I asked her if this was ominous as that's what the first ob/gyn had told me.  She said no.  Going to stay with the second doctor.

Then again, she may have been just trying to calm me down as my bp reached 176/99.  I had a massive panic attack just walking in that office; I've never had one anything close to this bad before.  They quickly took me to the back.  So now we are waiting 4 weeks and then going to do a second ultrasound.  Just hoping that it might shrink some before the surgery.  Emotionally, I'm handling this very poorly.

Thanks for all the information.
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Avatar universal
Thanks, Kevin.  I keep reading and re-reading your response.  I'm not feeling very well and I'm having problems concentrating.  Losing sleep, etc.  I just pasted and copied some of your info to my list of questions for tomorrow's appointment.  

The biggest thing I got from you and (I think) from SheWrites is that I'm going in the wrong direction--that I need to see an ob/gyn-oncologist.  That ob/gyn had told me the opposite,  but I choose to make my own decisions.  And I plan to go back to my new internal med (I was told not to) doc as she will probably take me in pretty quickly.

Still need to research some things you mentioned (MIS and Inhibin A&B) as I've never heard of such.  And look into other kinds of tests.

Thank you for the feedback.  And hope your wife is doing well.

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1242509 tn?1279120864
I am sorry you have to go threw this it is very stressfull to have this hanging over your head. Keep in mind most cysts are benign!!  Since your transvaginal sonogram(TV) showed a complex mass on your ovary warrants a very thourough work up to rule out any other potential issues.
My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010 and I know what it feels like to not know what the next step is. Here is a quick overview.
Tests like sonograms, Cat scans and MRI's along with blood tests like CA125, Inhibin A&B, MIS and CEA are just used as a guides for the Dr's to help assist in making a diagnoses(Dx). A transvaginal ultrasound (TV) is the most valuable diagnostic study in the evaluation of an adnexal or pelvic mass/suspicious cysts.  
An MRI is usually the next test that should be given as they are more precise when read by the right radiologist.
The blood test CA-125 is a test used by Dr's as a guide to determine if you have the most common form of ovarian cancer, approximately 80% of all ovarian cancers are epitheal ovarian cancer which is cancer of the cells on the surface of your ovary. Please keep in mind that CA-125 can be elevated if your menstruating and some other cuases of inflamation..
There are other types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like ca-125 to aide in their dx of epitheal ovarian ca. They are Inhibin A&B and MIS. Please keep in mind if and only if you have a dx of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing tumors as opposed to epitheal.
Unfortunately with any type of suspected ovarian mass/tumor/ suspicious cyst(s) surgery will be the only way for the Dr's too make a definitive Dx. It is NOT recommended to biopsy any ovarian mass/tumor/suspicious cyst as it can rupture and seed the pelvis with cancer cells if that what it turns out to be.  Please make sure you have your blood drawn for the following blood tests,Inhibin A&B, CA125 and CEA so at the very least you have baseline blood work.

SHEWRITES IS ABSOLUTELY CORRECT when she tells you to seek a GYN/ONCOLOGISTS!!!!

Since there is some suspicion based on your TV-sonogram I would immediately find a good GYN/Oncologist surgeon. I am not suggesting what you have is cancer but studies have shown that treatment of ovarian cancer by nongynecologic oncologists and by low volume surgeons is associated with suboptimal surgical management. I would reccomend going to a large tiertiary hopsital where they see large volumes of patients.  This is not to make you worry even more but to make sure that the Dr who treats you has vast experience with diagnosing and treating various types of GYN / Onc issues if that is what it turns out to be. If the Dr wants to remove the cyst/mass via laprascopic procedure PLEASE make sure they have much experience with removing these INTACT! All too often I read posts from patients who say their Dr thought it was a cyst and removed it haphazardly causing a rupture and seeding of the pelvis with cancer cells, only to be found on pathology post removal.
Next: From experience I would be asking for an MRI of the abdomen/pelvis ,MRI's are very precise when read by a Radiologist that specializes in GYN/ONC, My wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC to see a GYN/ONC surgeon Dr Carol Brown who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
The best advice you see all over these posts is you have to be your own advocate, be aggresive and stay on top of your phycicians. Get copies of all your tests/results as you are entitled to them. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best.
Kevin
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Avatar universal
First, about stages of cancer:  staging usually goes from one to four (most advanced), and in the case of ovarian cancer "a" would usually mean one ovary, "b" would mean two, and "c" means cancer  cells found in the washings or elsewhere in the body.  Staging is done based on the  pathologist's report after surgery, but a gynecological oncologist may be pretty accurate based on what he/she sees.  

I'm glad that your doctor believes it's a benign cyst, and it probably is, but there are quite a few women on this forum who have been told that, even after the surgery, and then learned otherwise when the pathology came back.  That's why we all get so exercised about using a gyn/onc.  As one of the ladies says, you only get one chance to get it right the first time.  

By the way, the CA-125 is not a reliable indicator for some women.  And it's especially unreliable pre-menopause and pre-surgery.  Also, if you preserve one ovary, it will function in place of both, so you can afford to have one removed.  However, I don't think you let a doctor who's determined to do a total hysterectomy do that surgery.  

Again, best of luck to you.  
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Avatar universal
Thank you for responding, Charlie and Shewrites.  I talked to a friend's friend who was a nurse.  She just had a hysterectomy.  She told me to keep what I could (uterus, other ovary, etc).  She seemed to not like what the doc told me.   I am going for a second opinion.  

The doc I saw was an ob/gyn and she told me that I did NOT need to see an oncologist.  And that I did not need to go back to my primary care physician (she didn't know the primary care doc was an internal medicine doc vs a family practitioner).  I feel that I'm not being given any choices (being controlled) with this doc, and I'm not dealing with that very well.

I am totally not knowledgeable about 1A and need to research this.  Thank you for mentioning it.

My brother called me on my 50-year birthday (Aug 13) and told me to schedule the surgery and I could cancel later.  I said no.  I realize that ovarian cancer is something that is usually detected too late.  I have seen bad results with docs in the past in other instances.  My mom's death.  My muscle damage.  So I am going to try to listen to my own instincts and talk to anyone who will talk to me about this situation.

Interesting that you (shewrites) say that this is small.  So my left ovary is twice the normal size as I was told it was a pretty good sized cyst.  Have read that a cyst (mayo clinic site) can get to 12 inches.  Wow.    I realize that it's rare for the blood work to be wrong about the cancer thing.  So my goal is to keep what I can.  Sorry, I'm skipping around.

Charlie, I really need to keep re-reading what you wrote.  Feeling so dyfunctional with the fear.

Thank you for responding to my post, Charlie and Shewrites!!  Any info is so greatly appreciated.
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Avatar universal
I'm sorry you're going through this.  

My first question:  IS THE DOCTOR A GYNECOLOGICAL ONCOLOGIST?  If not, find one and get a second opinion.  Gyn/oncs have more training and specialize in surgeries of the female organs.  You don't have to even be suspected of malignancy for the gyn/onc to be a good choice for this surgery.  One tricky part of a hysterectomy is avoiding damage to the tubes that link the kidneys to the bladder;  gyn oncs do this routinely.  Depending on your age and what he/she finds, the gyn onc may be able to preserve your fertility.  

Keep in mind that the majority of these things are benign, not malignant.  I don't know what the doctor is seeing that makes her think the worst.  Or perhaps she just likes to do hysterectomies.  By the way, the pap really only checks for cervical cancer.  

This is a very small "mass," whatever it is.  My tumor was 12 cm, but it was just in one ovary, so I was classified 1A.  My (aggressive) doctor did recommend chemo, but some gyn oncs do not feel it's necessary for 1A.  If what you've mentioned above is the whole story, you're likely to be either benign or 1A and that would be a good outcome.  

I'm guessing that you have time to do some research and to seek a second opinion.  Good luck.  
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Avatar universal
Hi there

I am so terribly sorry that you are going through this hideous journey, you have all my sympathy.It's perfectly normal that you should feel stressed and upset and you are doing the absolutely right thing getting a second opinion.

The fact is that only pathology after surgery will reveal exactly what is wrong with you. While imaging and exams help alot , only a doctor examining your organs will really reveal what is the matter with you. I am not a doctor but the fact that your cyst is "complex" and solid indicates that it may not be just a cyst, but it may be. The fact that your CA 125 is not raised is good , but cannot be relied on. If would also seem that your doctor seems to think that the safest thing for you is to have your uterus etc removed at the same time. Often they can do some preliminary tests on the cysts while you are on the operating table.

My understanding is that it is considered good practice to remove all of the female organs if malignancy is suspected and especially of there are other problems such as fibroids pressing on another organ. However alot depends on you, what you want , your age and what you want or need to do about your fertility status.

I had an emergency admission to hospital in November 2009 and was told that an ultrasound showed that I had a solid complex mass. The doctor told me that one of the things she needed to rule out was cancer. My CA125 was raised , it was 69, and I had a huge swollen abdomen. A later MRI scan showed it was a cyst.Everybody seemed to believe that this was foolproof and I follishly believed them ! Fast forwad to January 2010 , had TAH BSO as I had massive fibroids.However the "cyst" turned out to be a borderline ovarian tumour...scary.

I am not trying to confuse or sacre you , but the point I am trying to make is that the doctors will only know for definite when they open you up. Many many cysts prove to be benign or even if the worst happens and they are not many early stage cancers can be sorted out with surgery.

I can't over-emphasise how terribly sorry I am that you are going through, I so know how terrified you must feel, For me these forums were an absolute lifeline , we are all women from around the world in a club none of us wanted to belong to.

Please continue to be proactive about your health, ask the reason (s) why a particular recommendation is made and the pros and cons of each approach. Always write down your quesions beforehand and ask your doctor at the beginning of the visit how you can contact him  or her if you have extra questions later. If you feel comfortable doing so take a partner, relative or friend with you on each visit. Also ask the doctor what she would do if it was herself !

Sending you huge hugs and please keep in touch.

Charlie xxx
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