Women who don't have BRCA mutations could have other high-risk genes that affect treatment choices
by Pinktrillium on Wed Apr 25, 2007 12:00 AM
I've read enough on this message board to feel more empowered about pushing for further investigation into my problem. Ladies, take your gynecologists with a pound of salt is all I can say. Here's my experience... to date. 3 months ago, normal gynecological exam, felt cyst upon pelvic, ordered ultrasound, showed 4 cm cyst. Recommended 3 months birth control pills, followup yesterday, cyst still there, still 4 cm. Doctor's recommendation - come back in 8 months and we'll continue to monitor your CA125. My CA125 aren't alarming - 26, 36, 28, and just had another test, no results yet. Doc says - don't worry, most of these cysts are benign. He truly is waiting for 1) me to have more pain, 2) the cyst to grow larger, or 3) CA125 levels to increase - before he thinks further action is needed.... Well, my Mom had ovarian cancer, genetically, I could be predisposed. She survived and is living today. Doctor asks me "How paranoid are you?" Sorry, but that is an AHole question don't you think? "My Mom had ovarian cancer" is just a sentence to him. To me its watching your Mom be ill, be operated on, lose her hair, think her time is up, and then wonderfully survive and be living today. Sorry Doc, YEP, I'm paranoid. I've seen the journey and would like to avoid it if at all possible. If 80% of ovarian cancers aren't diagnosed until the disease is advanced, then maybe I think I'd like to be one who was diagnosed EARLY because she ranted and raved! This same GYNO - after being in his office THREE TIMES and having his asst. ask me "When was your last Mammogram" and me answering "more than 5 years ago", Doc STILL has not suggested a mammogram. Not that I'm worried about my breasts, but wouldn't you think this guy would say - hey, why not get your mammo. done? I'm 48 years old.
So, I'm giving his office 2 weeks, to get the results of the next CA125 test, and then regardless of the results, if he doesn't recommend a consult with a gynecological oncologist - I PLAN TO GET ONE ON MY OWN. Yes, I am Paranoid, and I WANT AN EXPERT, not a general gynecologist to tell me I have nothing to worry about!
I'm probably a pretty difficult patient to deal with, but then, have your ever had your gynecologist make statements to you like "How paranoid are you?" "I could take this cyst out now if it is bothering you?" "Your hedging your bets - this is probably not cancer, chances are only 1%" "Well the cyst hasn't changed, so that's where we are".
Thank you all, just felt the need to RAVE and RANT! Feel better now.
And here's a PS - Have any of you ladies had the hard sell - endometrial ablation? "Free yourself from the burden of heavy bleeding - wear white clothing everyday....blah...blah. 60 seconds and no more heavy bleeding". This, to me, is the latest remedy my gynecologist tried to sell me for heavy bleeding. I think he makes big bucks on it. He mentioned it to me within 5 minutes of me being in his office. At second visit, I declined. At THIRD VISIT yesterday, his asst. asked me if I WAS THERE FOR AN ENDOMETRIAL BIOPSY which is one of the steps toward prepping for endometrial ablation. GEEZ. NO NO , I don't want it. Let this MD get his boat payment some other way. When to pee in his bathroom, big poster on the back of the bathroom door "Free yourself from the burden of heavy bleeding....."
This is NOT a quack gynecologist. He is american educated, 20 years experience, perfect record, and owner of his own women's practice with out 12 practicing gynecologists. So disappointing!
by Patty5 on Wed Apr 25, 2007 12:00 AM
I would dump the GYN like a hot potato. Good for you for taking control. I had a couple of cyst that thankfully went away on their own. I think I would find a DR that would take the cyst out.
I am so glad your Mom is OK. Make sure you are too !
Lots of Luck, Pat
by Turtlebugs3 on Sat May 19, 2007 12:00 AM
Wow!! Don't give that salesman 2 more days, let alone two weeks. I have been fighting fallopian tube cancer, treated like ovarian, for 5 1/2 years. I want through exactly what you are going through. I had such faith in my GYN that I just followed his advice and didn't change docs for a good 2 years. How stupid was I?? I never once have had an elevated CA 125 so that is not a true indication of anything as far as I'm concerned. You are the only person who truly knows your body and when you walk out of the doctors office you are forgotten until your next visit.
It's wonderful to hear that you Mom is well and the cancer is not always genetic. I have been tested and thankfully my daughters don't have to worry that they have my gene. But, at the same time, you MUST follow through. It probably isn't cancer but you surely don't want to wait until it get's worse. Mine was a stage 3C and I have not gone more than 6 months without it recurring. At this point I blame only myself for having such faith in my doctor. Trust yourself, no one else. Even if you don't go to an oncology gyn and just go to another gyn for a 2nd opinion it would be wise.
Best of luck and yes, be paranoid!! You will be in my thoughts and prayers. Please keep me posted as I know how scared you must be right now.
by sugarbabe on Wed May 07, 2008 12:00 AM
Wow!!! I never knew that an endo biopsy was pre-requist for an ablasion. My doctor did the exact same thing, the only difference was that I had CIN III. He did the biopsy even before my colpo.
Thank you for venting like you did, I truly learned alot. Our doctors sound the same... because what you described was identical to what my obgyn said and did.
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