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Normal CA 125, Ovarian cancer still??

by pleasenocancer, Nov 29, 2008 07:06AM
I am a 29 y old F, have had two preg resulting in two children 6 and 3, One yr ago I began experiencing bad constipation, bad gas , bloating, and it seemed like i could eat nothing, I was diagnosed with I.B.S., but during the CT scan in the Er they found a "what they call harmless" hemangioma on my liver, and a what they thought was "fluid filled cyst" on my rt ovary. 8 mos later I went back for a repeat ultrasound, and transvaginal U.Sound, 11 21 08. They found that the hemangioma on liver has grown some still said not too worry about that, however they also found several hemmoragic cysts, with blood clots on both ovaries, and my fallopian tubes are filled with fluid?? They did a Ca 125 which was normal, although I hear it's not very accurate always. Iam still experiencing all these symptoms above and am now tired A Lot, I also sometimes feel as though there is a fist in my lower back, bowel area, and tightness across my lower abdomen, I go back to gyn on dec 15th and back to U.Sound jan 2nd. Now my GI doesn't think it's IBS any longer. They say either endometriosis or ovarian cancer, my great grandmother died of ovarian cancer, but ofcourse was much older..I am curious what anyone thinks..I have looked it up and seem to have way more ovarian cancer symptoms than endo???
Member Comments (10)

by manneca, Nov 29, 2008 08:19AM
I am so sorry. I went through a lot of tests and my CA 125 was 34 (upper limit for normal is 35). Finally, I had a CT scan and they found a 7.5 pound tumor. Please, please get a biopsy. I'm not a doctor and I don't know what time, but see a gyn onc (I didn't) and get a diagnosis. If they catch ovca early, your survival rates are high, but if it goes on, it can be awful. Please, please try to get an appointment with a gyn/onc ASAP. If you are anywhere close to a national cancer center, please try to get an appointment there. After my surgery and chemo, I chose to have follow up at a national center and I had an appointment in two weeks.

by Teresa222, Nov 29, 2008 11:04AM
To: pleasenocancer
Manneca is correct....you need more extensive testing.  If you are not seeing a GYN/ONC at this point, you need to switch to one. Odds are you do not have ovarian cancer, but it is time you find out for sure.  You have too many symptoms to ignore.
Good luck,
Teresa

by bcppc, Nov 29, 2008 01:45PM
To: pleasenocancer
I'm sorry you are experiencing all the same symptoms I had 3 yrs ago!
  I was misdiagnosed too...my regular doctor kept telling me i was "lactose intolerant" ...
I also had lower back and leg pain, and a "pressure like feeling in my pelvic area",,,
and the urgency to urinate...I was always "running" to the restroom!....as well as "just not feeling right" ...the fatigue and tiredness...Like I was in a fog or coming down with something...
like the others said, its important to get your doctor to refer you to a specialist, you can ask your doctor to refer to a GYNECOLOGIST/ONCOLOGIST....they will help you get to the truth of the matter....and please do it ASAP....
it sounds like the CA-125 is not a good indicator for you as it is for others...you also need to have a CT or Pet scan done
  IF it is cancer, hopefully you get it while its in its earliest stages...
even if its in the later stages, you can get through it!
  i was shocked when the doctor told me I was stage 4, but I feel like the worst is behind me, and I now am closely monitored and "living a normal life" again!.....You can do it!
We all send you our prayers and are here to support you any way we can!
Ana/bcppc

by pleasenocancer, Nov 30, 2008 04:25PM
To: all who responded
Thanks everyone for all of ur comments,Ana, thank you for keeping me in ur prayers, I will do the same for you. Thank you all for your responses. I will keep all in my prayers. My husband wants us to try and get pregnant now, he thinks it's just endometriosis, and I still may able to conceive.. despite the fluid in the fallopian tubes, I think he is crazy, and worry God forbid I do get pregnant somehow and then find out my ovarian cancer suspisions are confirmed..then what??? He wants one more child, we both do actually, especially as my 6 yr old son, is not his child, and does not live with us. We actually planned on trying last yr, right before I began having soo much uncomfortable pain and symptoms, which at the time were supposedly IBS, but now have been confirmed by my GI that they are not IBS. I had my own gyn appt on the 23rd of jan, but my GI said that was too long to wait so he booked me one at the hospital where he is located, Tufts NE med center on the15th of Dec, he said they will almost surely do laparascopic surgery to find out for sure...I am soo scared, sorry to ask more questions, but did any of you experience severe bloating mostly late day, at night, and or severe constipation with your symptoms. All I am able to eat is one wheat bagel, plain with grape jelly, fiber one cereal with lacto free milk, and strawberries, literally this is all my diet consists of and still my symptoms seem to be worsening, atleast the severe bloating and constipated feeling. I am tired alot now, and always feel cold. When you found out about your ovca were your CA 125 levels high Ana? I know that urs were normal limit manneca like mine. Manneca how old are you if u don't mind me asking? And what is ur cancer status now. I guess my appt is just with a reg gyn but it is in a major hospital..is that ok, or do I already need a gyn oncologist??  Thanks for your patience. Love and HOPE to ALL!!

by crecco, Dec 01, 2008 04:38AM
   A gyn/onc would be better, but if your gyn is at a major hospital, he should know what he is looking for and be able to refer you to a gyn/onc.
  You have been having these problems for far too long. I think that you should contact your gyn and tell him of your fears and explain to him that you do not want to have to wait. I know that is just two more weeks but that is two weeks too long. If he insists that you wait, you might want to consider contacting another Dr for a second opinion and evaluation. If your own Dr wants to put it off longer, refuse! Tell him to prove to you that you do not have ovarian cancer. It is your body and you have the right to insist that they do what ever needs to be done to determine what the problem is. With ovarian cancer in you family, they should not put you off.
  You are right, the Ca125 is not always an accurate test for everyone. If your gyn will not move any faster, you could possibly ask your GI Dr to refer you to someone.
  As for trying to get pregnant, in my own opinion, I think that should be the last thing you are thinking of right now. Right now the most important thing is finding out what is the cause of your problems and having something done about it. It is normal of you to be scared but try not to let this take over your life. Do what you can to try and stay busy, both physically and mentally. Do things that will help take your mind of of the worry. And if your husband still thinks that it would be a good idea to try and get pregnant, I think that you should call your GI and ask his opinion. I am guessing that he will tell you not to.
  I wish you all of the best and please keep us informed as to what you find out.
     Chris

by pleasenocancer, Dec 01, 2008 05:22PM
To: Chris/all
I have already told my husband that the pregnancy thing is out of the question, atleast for the time being, until I find out which of the two it def is, endo or ov cancer. Problem is, my GI is the one who referred me to the GYN, first appt avail supposedly is the 15th of Dec, I called my primary care but their first GYN appt wasnt till the 23rd of Jan, when I told my GI he said that was way too long to wait.. and thats when he booked the 15th for me..My pain is increasing daily for some reason, and my constipation is worsening, regardless of the miralax, magnesium and colace..I dont quite understand how OV cancer could be causing such bad bowel symptoms but have been told it can..my bloating late day, at night, is also worsening daily....I really dont think I can make it to the 15th...soo confused, and am also busy taking care of my 3 yr old little girl...any help is appreciated, or previous experience of others.....Tammi

by manneca, Dec 01, 2008 05:25PM
Hi! I'm 62. I was diagnosed with stage 1, grade 2 ovca March 31. I had four rounds of chemo. I just had hernia