Lisa O Posted April 22, 2004 Share Posted April 22, 2004 We have been following a "cyst" on my ovary since last July or August. It has gotten smaller which was reassuring but it should have gone away by now. It hasn't. I finally decided to do a CA-125 cancer marker which, of course, was elevated. My regular gynecologist said the only way to rule out ovarian cancer or a met of lung cancer was surgery even though there is a very strong likelihood that it is a cyst. I cannot believe I would have a FOURTH primary. I keep wanting to blame the Iressa. I don't even know why I want to do that. Lung cancer was my third primary after melanoma and basal cell (with an aggressive reoccurrence). He referred me to a gynecologic oncologist who is willing to see me tomorrow. I have no idea what to think. I don't even know how to prepare for this appointment tomorrow. Has anyone had a similar experience? Quote Link to comment Share on other sites More sharing options...
Snowflake Posted April 22, 2004 Share Posted April 22, 2004 No similar experience, but wondering why a simple PAP didn't find it out?? How about a BIOPSY instead of surgery? It's not like there isn't a "highway" to that spot.... I don't know what all the side effects of Iressa are, not sure anyone else does, either. I have noticed some "estrogen issues" since taking the Iressa, my oncologist can't help me there, most of his female patients are older women or those that have had a chemical hysterectomy due to chemo... Parts in question would be about the area YOU are having problems with - "timing" is what I am noticing changes in and other things... How strongly does your OB/GYN feel that it's just a cyst? Can you get another opinion? I'd wonder before going under a knife again (I'm beginning to be paranoid of being "put under" and the possibility of not waking up...). Good luck, Lisa. I hope it's just a cyst and that you find that out WITHOUT surgery! Becky Quote Link to comment Share on other sites More sharing options...
john Posted April 22, 2004 Share Posted April 22, 2004 CA-125 could also possibly be elevated in lung cancer and CA-125 is not too reliable for detecting ovarian cancer. The article below talks about a serial CA-125 (multiple tests using the exact same kind of test in a row). This will show if there is just a fluctiation vs a level that is increasing So hopefully it is just a cyst. high levels of CA-125 also occur during pregnancy and menstruation, and in the presence of endometriosis, benign ovarian tumors, and with other cancers. http://www.cancerwise.org/September_2001/ http://ovariancancer.jhmi.edu/ca125qa.cfm Quote Link to comment Share on other sites More sharing options...
Lisa O Posted April 22, 2004 Author Share Posted April 22, 2004 Becky, I have had timing problems since the Iressa too. My paps have been normal... just not the ovary. I agree with you about anesthesia though. It seems too risky after those lung surgeries - unless it was absolutely necessary. Thanks for the support. I really appreciate it. John, Thanks for the articles. I am guessing the gynecologic oncologist will take a conservative approach in light of this. He is in the same cancer center as my thoracic oncologist so perhaps they can put their heads together. We know I have active lung tumors, so if that is causing the high levels than perhaps a cyst is a cyst.... Thanks for taking the time to do the research. Lisa Quote Link to comment Share on other sites More sharing options...
Fay A. Posted April 22, 2004 Share Posted April 22, 2004 Lisa, Sorry to hear you are having to deal with this, too. CA 125 is the only tumor marker that has ever shown any evidence of usefullness as a measure of disease progression/regression in my case. The year before I was diagnosed with Lung Cancer I was being evaluated for Ovarian Cancer. Had a mass on the left ovary, had a postive pelvic exam and ultrasound, elevated CA 125. Mass was found to be a cyst, and I was subsequently dxd with Adenocarcinoma with BAC features. I still say there is some kind of relationship between certain forms of breast cancer, ovarian cancer, pancreatic cancer and BAC. Quote Link to comment Share on other sites More sharing options...
Ry Posted April 22, 2004 Share Posted April 22, 2004 I am hoping for a cyst. I think the Pap tests just catch cervical cancer and that's why they reccomend the CA125. I would imagine they can get at it by laproscope (sp?). They make an incision and blow you up with air and go in and get it. I had one of these done years ago when they were checking for endometriosis, it was an out patient procedure. John, once again I am always amazed at how quickly you come through to reassure people here. I hope you know how appreciated you are. Rochelle Quote Link to comment Share on other sites More sharing options...
Guest Phyllis Posted April 22, 2004 Share Posted April 22, 2004 Couldn't you try a chemo drug like carbo/taxol. I thought taxol was developed for ovarian cancer and related. Maybe Xeloda? That is just taking pills with not a lot of side effects (no hair loss, no nausea, just some foot and hand problems that are corrected with a dose reduction)and worked wonders on my lung cancer. The only reason I had to go off was they grew 18% but shrank the following month after I was off. If they had reduced the dose maybe? Oh well. Xeloda was originally developed to treat breast cancer, but they have found that it treats other cancers too and I don't think you have to be on a clinical study. I think any oncologist can write a scrip for it now. Great drug for women. I agree John is wonderful. I don't know what we would do without him. Quote Link to comment Share on other sites More sharing options...
Lisa O Posted April 23, 2004 Author Share Posted April 23, 2004 Fay, That is interesting. This was my first CA125 so I don't know if it has gone up or down with my cancer. I wonder if they will follow it now. Ry, Thanks. I am hoping for the cyst too! I wonder if they can do the laparoscopy with a local if one is necessary. Phyllis, The xeloda sounds like a great alternative although the Iressa has held me stable for quite a while. I hope it still is. Thanks for the suggestions Thanks everyone for the idesas and support. I am going to the gynecologic oncologist soon and will take it all with me. Quote Link to comment Share on other sites More sharing options...
john Posted April 23, 2004 Share Posted April 23, 2004 *if* it is a tumor, phyllis has a good point, there are drugs/chemos that will treat both. Kat (from ohio) on this board had either an ovarian met or ovarian primary and I think she is doing fairly well Quote Link to comment Share on other sites More sharing options...
Lisa O Posted April 24, 2004 Author Share Posted April 24, 2004 Hello. I am back. I don't have a lot of answers but at this point that is reassuring. John, are you sure you're not a doctor??? You had me well prepared for a lot of the discussion. Essentially, it is most likely cysts but not certain enough to put me in the "low risk" category. I may, like Fay, have an elevated CA-125 test because of my lung cancer. It is possible that a beneign tumor could also be causing it. He said we could do serial testing, ultrasounds and CA-125 to see if it stays stable. If it grows I will have the surgery. Stability or downward trend will indicate that I can move to the low risk category. Thanks again for the support. Quote Link to comment Share on other sites More sharing options...
-Cheryl- Posted April 24, 2004 Share Posted April 24, 2004 Lisa, When I was first diagnosed, three solid tumors were seen on my ovaries and uterus. They lit up on a Pet scan. However, benign growths will light up on a PET scan too. I then had a ultrasound, and my gyno thought they were solid benign cysts. Oddly, they they went away went after chemo (Cisplat/VP16.) Interestinhly, after chemo I had a CT scan, and they were gone! My sister had the same thing, and at first they thought it was ovarian cancer. Her ca-125 was elevated. The PA scared her to death, telling her that it was "more than likely cancer." It wasn't, and just as the Pet scan lit up, the ca-125 will show an elevation for benign growths too. So try not to worry. On a funny note, a couple of years ago, I told a male friend at work who was scheduled to have a physical to "be sure and ask for a ca-125. He did as I suggested, and the doctor told him "Tim, that is one cancer you don't have to worry about." He was so mad at me when he found out it was to check for ovarian cancer. I really did not know that, only that it was a blood test to detect cancer Ha!!! Cheryl Quote Link to comment Share on other sites More sharing options...
stand4hope Posted April 24, 2004 Share Posted April 24, 2004 Wow, Lisa. I will pray for you tonight that all goes well tomorrow. Are you being treated simultaneously for the melanoma and basal cell? Sounds like you have a very full plate!!! Hang in there. God bless you, Peggy Quote Link to comment Share on other sites More sharing options...
Carleen Posted April 24, 2004 Share Posted April 24, 2004 Lisa I don't have any advice or experience with this, but I just wanted to let you know that I am praying hard for you that this is nothing more than a benign cyst. God Bless Carleen Quote Link to comment Share on other sites More sharing options...
Jerrye Posted April 24, 2004 Share Posted April 24, 2004 Lisa, I was told after the first CT scan of my abdomen(Jan 2004) that my ovaries were covered with cysts. My onc said we will deal with this later... After 2 full doses of carbo/taxol and subsequent CT scan, they were gone. Hope for the same outcome for you... Jerrye Quote Link to comment Share on other sites More sharing options...
Melinda Posted April 30, 2004 Share Posted April 30, 2004 Lisa, My gosh... A possible fourth primary? Your original post did lead to a VERY interesting string -- (Fay--I had no idea!) --esp for those of us who are female out here... About a month ago, I remember feeling strange finding myself "hoping" that Connie would find herself dx'd with a fungus. Now I fond myself in a similarly odd boat hoping that you are simply stable and "cystic". Hang in there--but have them monitor this carefully!!! Melinda Quote Link to comment Share on other sites More sharing options...
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