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Old 02-07-2010, 08:32 AM   #1
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Large Complex Ovarian Cyst : Very Scared

Last Saturday I ended up in ER due to extreme abdominal pain. After taking a bunch of tests, they said I had a mass on my ovary that was about 4" in diameter. I was sent to a Gyn/Onc. He said what I have is a complex cyst with septations (?) and there was some fluid in my pelvic area. He didn't say what he thought it was, only that it could be cancer or benign and there is no way to know until he takes it out. He then went along telling me about the surgery (spending most of his time talking about what would happen if it was cancer which kind of freaked me out). He did an exam on me and said the cyst felt soft and not hard, but wasn't smooth feeling. I would have thought that he would have me in surgery a few days later, but no, I have to wait three weeks.

I'm a complete mess! Now that I know I have this "thing" in me, I feel the pressure in my pelvic area. Due to the anxiety and fear, I have no appetite and can't sleep. When I do sleep, I have weird dreams and wake up in a sweat worrying that is it cancer. I break down crying at least once a day and my body is so tense, I'm sure that is the reason for my upper back and stomach hurting. I sound really pathetic, I know. The Dr. did give me some Rx to take for the anxiety, but all it does it put me to sleep.

I did make an appointment with another Gyn/Onc at the different hospital only because I'm hoping I can get the surgery done quicker, but at the same time I'm a nervous wreck knowing that I get to go in again to hear the same thing that I heard the week before.

I"m 45, I had a hysterectomy about 7 years ago due to a large fibroid in my uterus, I have no family history of cancer and I took birth control pills for at least 15 years.

I just need some encouragement. Is three weeks a long time to wait for surgery? If sure seems that way to me. Is having a large complex cyst always mean cancer?

Help!

 
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Old 02-07-2010, 01:19 PM   #2
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Re: Large Complex Ovarian Cyst : Very Scared

Tamodeez,

No, having a large complex cyst on your ovary DOES NOT always mean cancer ! As a matter of fact, in premenopausal women such as yourself, you have a 90% chance that the growth is benign. Postmenopausal women have a 70% chance of it being benign. This is how common these growths are.

Seeing another gynecological oncologist in the meantime is not a bad idea as having a second opinion is always a good thing. Don't misunderstand me, I think that you should definitely have the growth removed and biopsied to be sure that it is not cancer. But sometimes medical doctors are so absorbed by their jobs that they forget to take the patient's mental health into consideration.

If the growth is soft and not hard, this is a good sign. However, the fact that it is not smooth is not such a good sign. Also, septations (these are divisions within the cyst .. as if there are a couple of cysts growing together) are a bit of a cause for concern. Septations does not always mean cancer either though. My own sister in law had a large complex, septated ovarian cyst (12 cms) and a high CA-125 reading and when they removed the growth, it was NOT cancer but a completely benign cyst. In general, ovarian cancer is usually a hard immovable growth which is irregular in shape whereas the most benign ovarian cysts are smooth, fluid filled growths. Yours seems to be something in between. The other item that made them think it may be cancer is the fluid in the abdomen, however, this fluid could actually be from the cyst leaking. Even benign cysts leak fluid and this is what causes the pain in the abdomen (eventually the body absorbs this fluid and the pain subsides).

The fact that you are premenopausal and were on the pill for over 15 years reduces your risk of this growth being cancerous. Most cases of ovarian cancer occur around age sixty. This does not mean that cancer at your age is impossible but it does mean that it is less likely.

Go and see this other gynecological oncologist and have a talk with him (or her). Ask him what he thinks the likelihood of this being cancer is and if he thinks that you would benefit from having the CA-125 test. This is a test that looks for a specific cancer antigen that is usually quite elevated in women with ovarian cancer. Normal is anything from 0-35. HOWEVER, this test is not super accurate and can sometimes show high when no cancer is present and show normal when early stage cancer is present. If you are prepared to put up with a possible false positive reading, you can always ask for the test and if it comes out normal, you would at least know that you are either OK or have early stage cancer (which is extremely treatable). Many doctors do not like to perform this test on premenopausal women because benign things like cysts, endometriosis and even menstruation can elevate the number in some women. When I took it, I made sure not to go while on my period, just in case.

This situation can be extremely stressful and you are going through a very difficult time because nothing is happening and you don't know exactly what you are dealing with. If you can get a copy of the radiology report, read it and see what it says. Also, seeing another professional will help as well. I have to tell you that many gynecological oncologists are not very tactful, which is surprising considering they deal with ovarian cancer patients. A lot of the time they are blunt and used to doing what is necessary with no sugar coating. This is the way they are trained. DO NOT let this get to you. I know women with ovarian cancer who have been extremely frustrated by the attitude that these professionals have. Just be sure to get the information that you need from them and ask questions if you don't understand. Don't read anything more into what they say to you. Sometimes I think that this is just a form of protection because they tend to deal with very sick patients sometimes. I myself consulted such a professional and I was ready to walk out because of this (however I was not wearing any clothes at the time so walking out was not really an option).

Above all, do not let fear take control of you, as difficult as this is. Catastrophic thinking is in our nature and it does not help you AT ALL. Do whatever it takes to keep your mind occupied on other things while you are waiting to see the doctor or waiting for surgery. I realize that this is probably all you can think about right now but obsessing over it will get you nowhere and will make things much worse. Try to instigate some sort of order in your life and take up meditation or relaxation in order to calm the nerves without having to resort to taking anti anxiety medication. These things will bring you back and keep you in good health while you go through this experience.

Many women on these boards have had to go through this and hopefully someone else will come and give you their experience. I myself had an 8 cm ovarian cyst which I watched with regular ultrasounds for 18 months before the thing started to grow and develop solid components. I went through surgery when it was around 9 cms and had my left ovary and tube removed along with it. The growth turned out to be benign but while I waited to see what it would do, I read every medical article about cysts that I could get my hands on and I learned a lot about these things. I too had been on the pill for over 20 years and knew that this was supposed to reduce my risk for ovarian cancer. I thought it was ironic that the thing that I thought I would never have to worry about was exactly what ended up scaring me. I was a mess and it was only through ordering my life and learning to live in a healthy and disciplined way did I manage to get through the experience. I started to eat healthy regular meals, walked regularly in order to relax my mind, listened to music, read and slowly got control of my life back. Concentrating on something else will help you as well. Anxiety is your biggest enemy right now.

If you need support or have any questions, feel free to come back and ask. I or some of the other ladies on these boards will be happy to help.

Take good care of yourself and let us know how you are doing.

((HUGS))

Estria

 
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Old 02-07-2010, 05:31 PM   #3
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Re: Large Complex Ovarian Cyst : Very Scared

Thanks for you response. My husband did remind me that the Gyn/Onc did say that reason the cyst isn't smooth is because it ruptured which would explain the abdominal paid I had.

 
Old 02-08-2010, 04:24 AM   #4
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Re: Large Complex Ovarian Cyst : Very Scared

Hi Tamodeez,

This is an important detail that explains a lot. A cyst rupture explains both the severe abdominal pain AND the fluid in your abdomen. The fluid is what causes the most pain and this pain should subside in a few days to a week.

All of these things should have been explained to you and simply telling you that it "may or may not be cancer" is irresponsible. I truly wish doctors could be made aware of all of the needless anxiety that they cause when they don't consider a patient's state of mind at times like these. Counter this with the fact that we all tend to magnify the bad parts of what is being said and it makes for a very distressed patient.

Take it one step at a time and let us know how you're progressing.

All the best.

Estria

 
Old 02-08-2010, 06:40 AM   #5
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Re: Large Complex Ovarian Cyst : Very Scared

Thanks, Estria,

I should have read my response before sending it. what I meant to say was the Dr. said it "could" have ruptured which would be why it was irregular.

I really believe it did though. That would certainly cause the sudden unset of abdominal pain that went away after a day. I'm starting to think that maybe this is a dermoid cyst. It seems like I have a lot of the symptoms or non-symptoms. I've had should pain after sex off and on for the last few years, the cyst has gotten really big, etc.
I'm on my way to see another Dr this morning with the hopes I can get the surgery done sooner. I'm hoping that when I leave her office I'm a little more encouraged and don't leave discouraged. I will remember what you said though and try not to read to much into what the Dr. says. I also know there is no why to know what it is for sure until they do surgery, but with my symptoms I'm really starting to think it is probably just a benign cyst.

 
Old 02-08-2010, 10:58 AM   #6
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Re: Large Complex Ovarian Cyst : Very Scared

Hi,

A dermoid is normally recognizable through ultrasound as it usually contains hair and teeth. I would think that they would have told you this after they did the ultrasound. There are all kinds of cysts (most of which are benign) so it could be any one of a number of them: hemorraghic, mucinous, serous, endometrioma etc. etc. After the surgery they will send it to pathology and be able to tell you what it is exactly.

I hope you have better luck with this other physician. Perhaps he or she will be a bit more tactful when explaining things. They may also be able to do another ultrasound (perhaps an internal one which looks at the cyst from a different angle) and give you more information on the type of cyst that it may be.

Take care.

Estria

 
Old 02-08-2010, 11:40 AM   #7
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Re: Large Complex Ovarian Cyst : Very Scared

I am trying to get some info on ovarian cysts and can't figure out how to start a new post....can you help me? It'll let me reply, but I don't have a button to strat a new one. Please help!

 
Old 02-08-2010, 03:27 PM   #8
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Re: Large Complex Ovarian Cyst : Very Scared

Hi Isher,

Go under "Find a Board", click on your topic and then at the top of the list of threads you will see Post a new message, click on that and you will be able to post.

Hope this helps.

Estria

 
Old 02-08-2010, 06:17 PM   #9
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Re: Large Complex Ovarian Cyst : Very Scared

I went in today for a second opinion (and to see if I could get an earlier surgery date) with another Gyn/Onc. It went much better. She was more sympathetic with me and although she can't say for sure whether its benign or not, she did tell me that "it is more probable that it is benign" so I guess that is good news. She did an exam and said the cyst seems to be more in the middle of my pelvic area and higher up more moveable instead of being down low and kind of in a corner (if that makes any sense). She also said my CAT scan from the week before didn't show any lesions on my abdomen. My CA125 was really high, but she wasn't to concerned about that. She said if I was 60 years old with this cyst and a high CA125, she would be more concerned.

With the other Dr. I would have to wait over 3 weeks for surgery. With her, I might get in this Friday. I was happy about that.

I left there feeling like she didn't think it was cancer, but I know there is know way of knowing for sure. I still think the cyst I have ruptured which caused all the pain and I think the cyst has been there for a while because I have had a slight pinching feeling in my left ovary and my shoulder off and on for a few years now.

The one thing I have noticed is that since this all happened, I've have more cramping in my pelvic area and I'm really tired so I'm wondering if that is a symptom of a large cyst? I guess if it suddenly decided to grow, it would make sense, but I've always been a person who had cramping after a pelvic exam and I've had 2 in the last week.

I do have a few questions;

Is it normal to feel tired and kind of crampy or pressure in my pelvic area? I didn't feel this way until this whole thing happened.

Which cysts would cause a pinching feeling in ovary and shoulder?

Can a cyst latch on to both ovaries? (the Dr. thought she felt a really small moble cyst on my right ovary, but wasn't sure is the large one just latched on or something).

She is taking out both of my ovaries. What should I expect?

I'm still very anxious and probably won't feel 100% until I know for sure. I left the office today feeling confident and now I'm anxious again. Is that normal? I did ask the Dr. if she gets a lot of women who come in with this same thing and she said yes.

 
Old 02-09-2010, 07:06 AM   #10
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Re: Large Complex Ovarian Cyst : Very Scared

Tamodeez,

Why is she taking out BOTH ovaries ? You need to discuss this with her if she is the one doing the surgery. If the cyst is only on one ovary, you absolutely DO NOT have to have the other one out too.

Taking out both of your ovaries will kick you into instant surgical menopause. Even if you are not far from natural menopause, it is still not a good idea to remove both ovaries because not only will the other ovary provide you with a smoother transition into menopause but the ovaries continue to produce small amounts of estrogen after menopause (in some women it is as high as 25% of premenopausal levels). These small amounts of estrogen are protective for your heart and bones. The doctor may want you to go on hormone replacement therapy to make up for this but it is much better to have your own ovary do the job. Many women go through hell trying to find the level of synthetic hormone that makes them feel OK and the ovary does it as a normal part of its job.

If both of your ovaries are compromised then this is a different story BUT if the complex cyst is only on one ovary, both ovaries need not be removed, especially if there is a better chance that the cyst is benign (90% chance). Of course, if it is discovered that the cyst is cancerous, they may have to then go back in and remove the other ovary and perhaps also the uterus, cervix and omentum (the apron of fat that lies over your intestines and gynecological organs). However, the chances of this are low.

You may want to tell her that if the cyst is confined to only one ovary, then to only take out the one ovary. Actually, some doctors will only take out the cyst and leave the ovary in tact but if you are not overly concerned about fertility and you are in your forties then taking out the ovary will probably reduce the risk of another cyst appearing on that same ovary and your having to have another procedure. This is what most concerned me after I decided to have surgery and my doctor did not even give me the choice (don't get me wrong, if I had disagreed with her, I would have insisted she take out only the cyst). In addition to the cyst probably having already destroyed most of the ovarian tissue, I think that removing the ovary and tube along with the cyst is most likely a simpler procedure than opening the ovary, prying the cyst out, aspirating it and removing it and then suturing the ovary before closing. Of course the connections to the ovary would have to be sutured and cut so it is not all that much simpler but this with the fact that the ovary cannot malfunction again was reason enough for me.

I can tell you that if my doctor had said that she will remove the other healthy ovary, I would have said absolutely not. My doctor even asked me if I wanted to have a tubal ligation on the other healthy ovary and tube (for birth control) and I decided NO. I did not want anything to possibly interfere with my one remaining ovary's function (I have read that rarely the bloodflow to the ovary is compromised during tubal ligation). I told her to fix what is broken and to leave everything else alone.

MAKE SURE THAT YOU ARE HAVING THE RIGHT PROCEDURE AND THAT YOU DON'T RUSH INTO DOING THE WRONG THING BECAUSE YOU ARE SCARED. Take the time to speak to her and make sure that she has the right instructions as to what to do. Of course if there is cancer, she will have to do what is necessary to get as much of it as possible, including the removal of certain organs such as the other ovary etc.. HOWEVER, if it is a benign complex cyst on one ovary AND the other ovary is perfectly healthy, you will go into instant surgical menopause FOR NOTHING.

Many doctors still think that by removing the other ovary they will be removing the future risk of your developing ovarian cancer but ovarian cancer is not a common illness and kicking you into surgical menopause and possible future health problems in order to remove the remote possibility of future ovarian cancer makes absolutely no sense at all. The mindset is changing in the gynecological community regarding this but some doctors still have this idea.

As to the cramping and tiredness, it is difficult to tell why this may be. I would venture to guess that the tiredness you are experiencing right now is due to your anxiety and inability to sleep properly because of this cyst. The cramping could be due to the cyst, especially if it had ruptured. It would take time for things to calm down in there. The shoulder pain may be unrelated. When I had my cyst, I blamed every ache and pain on the damned thing and practically everything (including my ovulation pains) continued even after my ovary was removed.

Feel free to come back and ask more questions if you need to but in the meantime, be sure not to rush into things. Make sure your doctor knows your wishes before you have the procedure done.

Take care and keep us posted on how you are doing.

Estria

 
Old 02-11-2010, 12:36 PM   #11
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Re: Large Complex Ovarian Cyst : Very Scared

Thanks Estria for the suggestions.

Honestly, I've been so concerned about the cyst that I didn't even think about my ovaries and what could happen with that. I will talk to my Dr. for sure. I'm only 45 and even my Dr. said I was still probably 7 or more years away from starting menopause so I'm kind of surprised that she asked me about taking them both out. Maybe she saw how anxious I was and thought removing that anxiety from happening again would make me feel better.
I have surgery tomorrow. I reread the first response to wrote to me and I do feel like this isn't cancer. I will be so glad when it's over. The Dr. did an exam on my Monday and ever since I've just had intense cramping in my lower pelvic area. I'm guessing she some how irritated the cyst.
I did have another question for you:

To me this sounds like an endometrioma that ruptured. I've never had any pelvic pain since my hysterectomy, but I would occassionally get that twinge in my ovary that would go up to my shoulder. I've read the you can have an endometrioma and not know it and they can rupture due to intercourse or exercise or something like that. I did have a pelvic exam this past November, but my regular Dr. didn't feel anything at that time. Maybe it just decided to grow over the past few months. The Dr. I saw this week also noted that she thought she felt a small cyst on my left side but wasn't sure and thought it could be the larger cyst latching on to the other ovary since my cyst is higher up and more in the middle of my pelvis area. Does this sound like an endometrioma to you?

 
Old 02-11-2010, 01:32 PM   #12
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Re: Large Complex Ovarian Cyst : Very Scared

Hi Tamodeez,

It is IMPOSSIBLE for you to know with 100% certainty what kind of cyst you have until it is taken out and biopsied. Also, for your doctor to say that it probably latched on to the other ovary or whatever, makes absolutely NO SENSE.

You need to understand that all women grow small cysts on their ovaries as a normal part of their cycle. At the start of our periods we begin to mature eggs in our ovaries. There is naturally some fluid around these eggs so these are small follicular cysts. About 10-14 days after the start of our period, one of these pockets or "cysts" breaks open, essentially ripping the ovarian tissue open so that the egg is released. In the meantime, the fallopian tube moves closer to the ovary (that fingerlike part of the tube) so that the egg can be released into it (this is truly amazing when you think about it). After the egg is released, the ovary heals itself very quickly and the pocket that contained the fluid becomes a corpus luteum or corpus luteal cyst (if there is more than average liquid). This cyst releases progesterone in order to prepare the uterus for pregnancy. If no pregnancy occurs, the corpus luteum is absorbed by the ovary and your ovaries stop producing hormones (estrogen and progesterone). Without any hormones, the lining of your uterus cannot survive so it dies and you shed your lining in your period. When you have had a hysterectomy, the egg is released into the abdomen (the egg is microscopic in size) and is quickly absorbed by the body. Since you have no uterus and lining then obviously you will not have your period. However, the hormones still go through the cycle and your ovaries still go through the motions as before. Therefore, at any point in time, you will have either a follicular cyst which contains your egg, or a corpus luteal cyst which is the leftover pocket of fluid from where the egg came out. During your period you are less likely to see cysts and this is the best time to go for an ultrasound. The difference between an ovarian follicle (or graaphian follicle) and an ovarian cyst is the size. A follicle is about 1-2 cms whereas a cyst is larger. Both the follicles and the corpus luteum can become larger than normal depending on the amount of fluid they contain. However, both of them are still normal functional cysts that go away all by themselves. Therefore, even if you have another cyst on the other ovary, this does not mean that there is something wrong. Usually normal cysts can grow up to about 5 cms. Anything larger is usually an abnormal cyst (the majority of which are still benign).

I have to tell you that I have serious doubts about pelvic examinations and their ability to give accurate information. I had a 9 cm cyst on my left ovary that my doctor never felt. Gynecologists are much better at this, of course but they are still kind of blind really. Also, in heavier women it is practically impossible to feel cysts or masses unless they are really huge. In thin women it is easier to palpate ovarian masses. Therefore, your doctor will not really know what she is facing until she goes in and sees with her own eyes. This is why it is important to leave her with proper directions that she can follow when you are under anaesthesia. If it is your wish to keep your other ovary if possible, you need to tell her before you are put under. Normally you will have to sign something agreeing to the procedure so make sure you are signing for the proper thing. Obviously if she sees cancer, you will have to give her permission to do what is necessary. Surgery under these circumstances depends upon if the cancer has spread. If cancer is seen in the abdominal cavity, the doc will usually remove the uterus, ovaries, tubes, omentum and even some lymph nodes so that they could be inspected. In addition, sometimes it is necessary to remove a part of the bowel. This is only if cancer is seen. Other issues which may require removal of organs is advanced endometriosis but if they did not see any endometriosis when they performed your hyst then it is highly unlikely that you have acquired any since (endo is essentially the lining in your uterus that travels into your abdominal cavity and behaves like it would as if it was in your uterus ... without a uterus, there would be no uterine lining to travel into your abdomen). I would imagine that a large endometrioma would also have been visible during your hyst.

Just be clear with your doctor. Tell her that if it looks like a benign cyst then you only want the one ovary taken out .. that is if this is your wish. Your wishes are extremely important, especially if the cyst is most likely benign.

As to the type of cyst, only removing it and examining it under the microscope will tell you for sure. Be warned that this usually takes about a week to ten days, so you will have to wait. They can do a quick version of a biopsy by freezing a sample of the cyst while you are under in order to make sure that it is benign. Then they go ahead and so the rest of the cyst in the normal fashion to ensure that the frozen biopsy is correct (the frozen biopsy is not as accurate as the normal method). If you wish to have this, mention it to your doc.

I hope this information has served to help you to make decisions that you are confident about. Take it easy and relax. I am sure that you will do just fine. If you have any more questions, come back and ask ... even after surgery. Just keep in mind that I am not a physician .. just a person that has gone through this and who has been forced to do a lot of research on the topic.

All the best for the surgery and a speedy recovery.

Estria

 
Old 02-11-2010, 01:47 PM   #13
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Re: Large Complex Ovarian Cyst : Very Scared

Hello again Tamodeez,

I realized that my previous post may be confusing. Just to clarify. Usually what is done is the removal of the one ovary, a frozen biopsy while you are under anaesthesia and if the biopsy is clear then nothing more. If the biopsy is not clear, then either the other ovary is removed, along with a couple of the sentinel nodes, or if fertility is an issue, then just the nodes (and the other ovary is left). After surgery, if cancer is found in the nodes then another surgery may be necessary to go in and remove other organs such as the uterus and omentum. Also, chemo will be necessary (6 treatments put directly into the abdomen). This is all if, if and if, of course. The majority of the time, the ovary is taken and the biopsy will show all clear and the patient will be sewn up and goes home. This is why it is preferable not to loose your other ovary unless absolutely necessary.

Hope this is clearer. Godspeed for the surgery.

Regards,

Estria

 
Old 04-07-2010, 04:44 AM   #14
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Re: Large Complex Ovarian Cyst : Very Scared

i just had a 7 cm cyst removed the other day. i went to get my annual pap test and it came back abnormal. went to get an ultrasound (where they found this cyst) and a biopsy done. cysts are benign but if not taken out, it will cause you alot of problems. please get it done as soon as possible, if need be. my surgery went very well. if your afraid of getting sick after the anesthesia, please tell the anestheologist to put something in there so it won't make you sick, follow the doctor's orders before surgery (do not eat or drink anything after midnight) and avoid much activity after surgery. good luck and my prayers will be with you.

 
Old 04-08-2010, 04:20 AM   #15
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Re: Large Complex Ovarian Cyst : Very Scared

Hi princessone,

Please note that your pap has nothing to do with your ovaries. The pap tests for cervical cancer and not ovarian cancer. Only the CA-125 blood test looks for ovarian cancer antigen (or rather, an antigen that is usually elevated when ovarian cancer is present).

An abnormal pap should require further investigation (such as a repeat pap) in regards to your cervix. Discuss this with your doc.

Regards,

Estria

 
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