# Ovarian Cancer



## kristinrandle (Jul 9, 2004)

Okay, I'm getting frustrated and a little worried and wonder if anyone out there has knowledge of ovarian cancer (OC). About a month ago I started having symptoms which mirrored IBS, but I also knew they they mirrored the silent symptoms of ovarian cancer. When I went to my doctor, he poo-poo'd the idea of OC, and told me to take Zelnorm (that, I will never touch again!). My IBS-like symptoms are going away except for the bloating and my abdomen looks 4 months pregnant. When I go to different Web sites, I get a different list of symptoms for OC (some say I have 6 out of 8 symptoms, and others only 4). The frustrating part is that my doctor won't refer me for a CA-125 test. What is the problem with that referal? I called another doctor to ask for the referal, and she hasn't called me back. My GP readily wants to sign me up for a time-consuming, invasive colonoscopy, but a CA-125 he won't touch.What should I do next? I may not have OC, but I'd rather look like a fool who insisted on having the test and finding out it's NOT OC, than the fool who didn't insist and winds up dead of cancer. Thank you


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## Elariel (Jan 1, 1999)

Get another opinion. if he wont refer you for a test, he's not taking you seriously imho. keep pushing with him and other doctors until you get it.


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## sam24 (Aug 4, 2004)

gassy girl,why did you say you would never touch Zelnorm again?


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## kristinrandle (Jul 9, 2004)

Scribs,Zelnorm gave me explosive D. If the C got bad enough, perhaps I could cut Z in 1/2 and try it again. Lots of insoluble fiber seems to be working well for me.


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## EmilyTrost (Aug 2, 2004)

That blood test is Nothing! My doc has done them at routine exams a couple of times in the past few years becuase of my IBS symptoms etc. just to be on the safe side.


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## sadone (Dec 17, 2003)

yeah, i've heard that the test is easily done, so why don't doctors give it to women regularly, especially those that have symptoms like those exhibited in the early stages of ovarian cancer...?i'm so sick of not being taken seriously by doctors! it disgusts me...


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## editor (Jun 20, 2004)

I would imagine that given the cost of health care abroad, it makes more $ for drs. to refer people for, or to carry out, very expensive treatments, when none are really necessary?I think it's worth your while going to see your gynaecologist and ask her /him to check you out for cancer, fibroids, endo - the whole range, **before** you are sent off for an operation you might not even need.Also, don't forget that *some* drs, even today, think that their word is absolutely Final. I can appreciate they have a very demanding job, but, nothing is cast in stone. Even drs. are human.Definitely ask for a second opinion. It's your life we're talking about, after all.Best of luck to you.


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## RitaLucy (May 3, 2000)

I insisted on this test a couple of years ago myself because I was so having so many problems. With IBS we do get increased anxiety at times because we feel terrible and the Dr.'s keep telling us it is ok but logically it doens't make sense because we worry that something else MUST be going on to cause such horrible pain, bloating, C or D. The bouts of anxiety are also normal as I have experienced them for many years. Each time my IBS throws a new symptom at me I worry that maybe someting else is going on. Solution -- find out that it is ok and then you will feel better.The only way to know for sure is to have the tests done. You need to find a Dr. that understands this disease and is compassionate about it. I am very lucky to have such a Dr. He worries as much as I do at times I think. We are on the same wavelength. He will sit me down and explain my symptoms and tell me what is going on and then he will run the blood tests to be sure that nothing else has popped up. I insisted on the C-125 test when my colonoscopy showed a raised area where something from the outside of my colon was pushing up on it to form a raised area. After my colonoscopy my GI ordered a CT scan but in the meantime I saw my gyno for an exam and I asked for the C-125 test. The things that could have been pressing on my colon was either an ovary or a twisted bowel. My gyno told me that I "had to get out of my cancer bubble". I told him to let me worry about that and to do the test. Some Dr.'s want to call you neurotic if you use the cancer word or take charge of your health. I have seen too many times where people relied soley on their Dr.'s advice or diagnosis and ended up with something more serious. You must be in charge of your own health these days especially. If they don't like it too bad and find someone who will work/partner with you.


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## crankypants (Aug 25, 2002)

Gassy girl,You didn't say whether you had seen a gynecologist recently. You also didn't mention your age, which is a logical consideration here.You are more likely to get a CA-125 from a gynecologist. It's my impression both as an individual and as a medical editor the past 14 years that most primary care physicians don't know all that much about the female reproductive system and don't feel responsible for it. Men are much more likely to get help with problems involving their genitals from their primary doctors than we are, and truly holistic care for women is going to remain a scarce commodity for a very long time, I'm afraid.I would not assume that the GP is resisting CA-125 because he'd rather get the billing for a colonoscopy. Remember, docs don't make the rules any more; the health plans do. If a doc deviates from the approved diagnostic routine for a given complaint, he risks partial reimbursement or nonreimbursement, or at the very least, having to deal with a distraught and angry patient who's being hassled by the lab after payment was denied to them.CA-125 has to be carefully interpreted in the context of clinical findings. The test result is not "yes" or "no"--it is a point on a scale, like the PSA test for prostate cancer. And there is a lot of potential for "false positives," especially among women with endometriosis--a common and frequently undiagnosed problem. Your GP may well be aware of these drawbacks. And the rulebook that he plays by probably says that with abdominal symptoms that seem to be related to digestion, the GI tract should be investigated first.Good luck with getting your concerns resolved. You did mention that some of the symptoms have improved and I hope that trend will continue. We all--and especially those of us prone to anxiety, though I have no idea whether you are--have "symptoms of the week" and "symptoms of the month" that blow over like a rain cloud without ever being explained.


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## Stedwell (Jan 5, 2003)

Hi Gassy Girl,I was and suppose still am in much the same situation as you. My doc finally gave me the CA125 test but I literally had to beg for it and he was not very nice about it. I must say that having it did not ease my worry as like crankypants explained it is not a definitive yes or no test. Since then I have had several scans and a laparoscopy which were much more conclusive. have you had either of these tests?


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## Bathroomqueen (Jun 20, 2003)

Here's a tip... if you ask your doctor for a test and he/she says no, then ask them to put a note in your chart stating that you asked for the test and were turned down. Chances are the doc will be writing up an order for the test rather than the note!!I have a great doc so I have never had this problem myself. One ?? about ovarian cancer.. will it show up on an ultrasound or during a laparoscopy?Thanks,Angie


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## editor (Jun 20, 2004)

BathroomQueen,regarding your question, I do not think it would be possible to say for definite "you have XX" *merely* from an ultrasound. It would be great if it was, no? And not just regarding cancer scares either! Most likely, if the doctor saw something that he thought needed further investigation, you would be sent down the more invasive investigative root. Having said all that, things that might look weird on ultrasound, do not necessarily mean that anything nasty is going on. And, factor in that sometimes - for a variety of reasons - ultrasounds are not too clear in some people anyway, so you may well end up referred for another procedure regardless.One thing about age: yes, it is a factor **but** please do NOT let that be the only consideration. I'm really fed up with the attitude presented to women by health care professionals, about a range of health issues:"Oh, you can't possibly have breast cancer [ovarian cancer / gyno problem in general]! You're *far too young.*"














Meh...


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## crankypants (Aug 25, 2002)

No health care professional, and I emphasize professional, is going to say "you're too young" to a patient who has symptoms consistent with ovarian cancer. But he or she will consider age as just one of numerous possible risk factors, such as family history of the disease, in deciding how aggressively and urgently to pursue the diagnosis.Per the U.S. National Cancer Institute: "The likelihood of developing ovarian cancer increases as a woman gets older. Most ovarian cancers occur in women over the age of 50, with the highest risk in women over 60." http://www.nci.nih.gov/cancertopics/wyntk/ovary/page4


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## kristinrandle (Jul 9, 2004)

Thanks all. I'm 41 (ugh!), BTW. I contacted my Gyno and she said without an exam (I had my yearly in May), that she wouldn't just order the test, however, she agreed that I should be tested to rule out OC and that I shouldn't take IBS as a diagnosis at face value. Crankypants, you mentioned, '"We all--and especially those of us prone to anxiety, though I have no idea whether you are--have "symptoms of the week" and "symptoms of the month" that blow over like a rain cloud without ever being explained."' That sounds like something I am experiencing. Perhaps I do ONLY have IBS (this would be great compared to OC). Still, I'm tired of being dismissed by doctors and worrying about it until it consumes some of my daily thoughts.


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## RitaLucy (May 3, 2000)

3 Dr.'s told my friend when she was in her 20s that she was too young to have colon cancer. She had blood show up on 3 different occasions and each time they told her she was too young for colon cancer and not to worry. She died this past December at age 36. Stage IV colon cancer that probably if it were caught early could have been cured. It was finally my gastro who diagnosed her but it was too late. She lived 17 months after she was initially diagnosed and that was 11 months longer than they thought she would.Her oncologist was amazed when he reviewed her case once she got into a research program at MD. At one visit he looked at everyone and just blurted out..."Do you know how long it takes for colon cancer to get to the brain". We all knew at that point that she had to have this cancer at least 8 - 10 years.None of use knew about the blood -- she kept it quiet and private or we would have dragged her --especially me with all the poblems I have had for years to the nearest gastro for a colonoscopy.Never let them tell you are too young or too old for any disease.I worked as a PA and for Dr.'s for years and the "better" ones don't let anyone dictate to them how to practice medicine.


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## editor (Jun 20, 2004)

Cranky,I do see your point, but I beg to differ.







Even good "professionals" can be coated with the great cloak of arrogance occasionally. Not all, but some. "No family history? Oh, I'm sure *you* don't have it." etc. Like I said above, drs. shouldn't discount people - but they do, as can be seen by people who are routinely misdiagnosed, and not only with OC but with a range of different health problems.The whole thing with OC is that it *can* be quite difficult to detect, as I am sure you are aware.I think cancer education, diagnosis and treatmentsare part of a wider problem. It's getting better, but there's still a way to go. I'm sure people may apply the same sentiment to a range of health care problems.For women in the UK, the local GP is the one who would make the initial assessment, including bloods and the C.test. Referal to a specialist would follow.To get back on track: Gassy, I think you should try not to freak out (hard, I know) and see what reassurance your doctor can give you. If you want a second opinion, ask for one. If you find info out, ask your doctor to discuss it with you. You're not trying to tell him his job, you're just trying to be proactive in your own health care. I'm sure a doctor would rather someone says: "hey, dr. I am worried about XYZ because I have been feeling like this [be specific] - even though I realise I might not be in the high risk groups, I am still worried. What do you advise?" Once you know for certain, then you can decide what you're going to do. It might be that you don't have OC at all, in which case, all the worrying was for nothing?{hugs}Best wishes! And, let us know how you get on.RitaLucy,I'm sorry for what your friend went through, and for your loss. I know it's very difficult. {hugs} to you too!


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## Stedwell (Jan 5, 2003)

Just thought I would ask - as I have had an ultrasound and a laparoscopy and a CA125 test- how is ovarian cancer diagnosed if not by any of these proceedures? I know that a scan would not be a definate diagnosis but I thought that looking at your ovaries during a lap would be.


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## christiane53 (Jul 6, 2002)

I've just been down that road so I do have a few answers for you.I had tests for my IBS (colonoscopy, gastroscopy etc, and an abdominal scan) and the scan showed that one of my ovaries was bigger than the other. They did a CA-125 test and it came back perfectly normal. They felt this was good, but unusual because lots of things can cause elevated CA-125. Many doctors don't like to do it because of this ... some do it without the patient even knowing what the test is. The results can be very misleading. It is not considered a good screening test for OC ... there isn't one yet, but lots of research is being done here in Aus to come up with one. IBS symptoms can cause raised CA-125 ... maybe that's why your doc doesn't want to do it. Getting a high reading would cause you further distress, and it may mean nothing more than that your IBS is playing up. Endometiosis can cause a high reading. So can a particularly bad monthly cycle. Once a diagnosis of OC is confirmed it is considered a good progress marker of the disease. That is the intended purpose of the test ... a "tumor marker" to monitor the progress of OC.With me, my GP ordered a follow-up abdominal scan for enlarged ovary. They did a transvaginal scan (I don't fancy them at all) to get a clearer picture. It showed that I had a quite large fluid filled cyst on my ovary that should be monitored from time to time.Now, there are a couple of different types of ovarian cysts. Simple cysts, or functional cysts, are fluid filled cysts that are formed each month with the growing ova. They are quite normal. Sometimes they don't pop or release an ova for some reason. Then they can keep growing for a while, but normally they eventually pop (painful) or just dissipate. The second type is a complicated cyst. This is a cyst which has various characteristics that differentiate it from a simple cyst. They are identified by ultrasound and differentiated by the echo they produce. An internal echo in the ovary can mean lots of things, not necessarily sinister, that make the cyst a complicated cyst. These do not always become cancerous, but they have a slightly elevated risk of becoming cancerous.My abdo was re-ultrasounded after 8 months and they found the one cyst unchanged, but the other ovary had developed a complicated cyst. My CA-125 was still normal. To cut a long story short my GP referred me to a gyno after another abnormal scan 3 months later, and the cyst had grown a lot. The gyno looked at the scans and said that both ovaries should come out (1 am 55 and had a uterine hysterectomy years ago) because I hardly needed them anymore, and have ovarian cancer in the family. I'm just back from the hospital ... the cyst on my right ovary was the kind that doesn't go away but can grow to huge size over time so it definitely needed to go. The one on the left was the complicated cyst and it had grown again since the last scan. There were lots of adhesions so it was difficult to get out. Biopsy showed it was low grade pre-cancerous, which would have gone on to develop cancer before much longer ... so it was good to know it was gone.Now, gassy girl, the reason your gyn would not do the test without an exam first is because they can tell a lot from an exam. The ovary may be enlarged, it may be harder than normal, or even softer than normal. After the exam she would do the test, by the sounds of what she said even if the exam was normal. It is best to see a gyn about this sort of thing because most GP's don't really know a great deal about OC ... that's what makes them a GP ... they have no special area of expertise. They are great for the general run of the mill aches, pains, colds and flu's etc, but not for specialty areas.Gassy girl, I wouldn't take your symptoms at face value being IBS, but I wouldn't get too worried about OC at this stage either. Get in and see your gyn, and let her do the investigations. She sounds competent and will do what's right for you and she is the right person to have do it. Don't pin all your hopes on a CA-125 test though ... like I already explained, it's not a diagnostic tool.I hope this helps you somewhat. I'll be checking back in from time to time to see how things are going for you. I'm usually over on the Meeting Place forum. Feel free to PM me if you have any other questions.Take careKristy







P.S. Stedwell, in answer to your question, OC is diagnosed after a biopsy shows cancerous cells. If your laparoscopy didn't reveal abnormalities in the ovaries they wouldn't have needed to do a biopsy. The biopsy is done to confirm either way whether it is OC


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## peardrops (Jan 3, 2004)

Thanks for all that info Kristy. I think a lot of us who have IBS worry that we could have OC. In my early twenties I had a laparoscopy, they thought I had appendicitis. I had the most awful, continious pain in my right side. The surgeon told me my right ovary was cystic. The treatment was to come off the pill and have a baby! Said it would soften the ovaries. I've since had checks done on my ovaries, transabdominal and transvaginal scans - does the last one come with batteries!! Even now, I still get the odd twinge but as I'm in my senior years now, the twinges aren't as bad - one good thing then about getting older! My last scan result said both ovaries appear normal in size and texture and no evidence of free fluid. I've followed your recent operation over on TMP - I'm so glad you came through it OK. Hope you recover to full health soon


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## misssmaz (Dec 26, 2003)

hi i'm 19 and panic a lot about oc my doc says i shouldn'tworry about my bloating but now my periods are screwing up, i want to go to the docs but my ibs is so bad i can hardly leave the house, this is doing my head in and making my anxiety worse.


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## Margg (Sep 7, 2004)

I recently had been feeling lower right sided dull pain that would come and go and be really painful during my period. Had an ultra sound done and showed thickening of my uterus, but Doc said this would not be causing the pain. so he's ordered me a bariumn-enema to rule out and serious disease at this point. I'm so scared, but I want to know what is causing the pain. I have not been diagnosed with IBS, but my entire young life I have suffered from a "nervous" gut with spells of D and C. If I was anxious about something, I would have several loose bowel movements before leaving the house and would have to get up earlier to fit them in! Lately with this test coming up I have lost 5lbs. not eating because of no appetite with the anxiety. My Doc yelled at me and told me to stop making myself sick. I cannot wait until Thurs. to get this test over with and begin dealing with whatever I have to. Has anyone had similar symptoms to mine?


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## buddhamom (Sep 12, 2004)

WOW - I'm so relieved to read this post! What great info you all have! I honestly wondered if my dr was off his rocker cause i couldn't believe that the pain i was having and symptoms could be related to IBS (i have endo and always assumed that such sever pain the lower abdomen must have to do with female issues). Too see so many other women who thought they could have OC or something of that nature..really puts my mind at ease that my dr does know what he's talking about!Thanks and Smiles Kira


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## Janet (Aug 25, 2004)

I'm glad I'm not the only one thinking of OC. I want to ask my GP for a CA125, I can accept IBS-D but I want to be sure that's what it is. They haven't done any tests just said IBS. I want to be reassured. Why do doc.s blow off our concerns and act as if they only have time for sore throats and colds?


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