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Ovarian Cysts or ???...advice needed... Ovarian Cysts or ???...advice needed...

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  #1  
Unread 11-13-2003, 11:09 AM
Ovarian Cysts or ???...advice needed...

Hello...
I have some concerns regarding some 'cysts' that I've been getting and the course of action my physicians have been taking in dealing with them. I have come seeking advice and any possible insight anyone would be willing to share with me based on your own experiences.
The story is somewhat long, so I will try to keep it to the point. In february of 03 I was told that I had a 'complex cyst' that had a high chance of malignancy based on the way it looked on ultrasound. After consulting with a gyn. onc, who told me he was almost sure it was endometriosis, I had an exploratory lap. Two days prior to the lap, I felt my cyst rupture- that's an unmistakable feeling. My doctor did the lap two days later, and found nothing- not even endometriosis as the gyn onc. had suggested it was. They didn't do any type of biopsy, testing of fluid, nothing. It was a miracle- apparently.
Three months later, another cyst. Before I got in for the ultrasound it ruptured. The contents were seen on the ultrasound, but no cyst. I was sick (nauseous) for, at least, a month afterward. In July the same thing happened. Symptoms of a cyst, scheduled for ultrasound, rupture, sick...Fast forward to October 30. I went to the doctor (for a lump on my breast- that's another story) and mentioned that I thought I might have another cyst. I had the symptoms- lower back pain, pelvic pain and as it grows I get pain down my leg. She scheduled me for another ultrasound Nov. 11. October 31, while trick-or-treating, I felt the same old pain of a rupture- stabbing- where I can't fully stand up. Only this time, the pain didn't pass. It continued throughout the night and into the next day. I went into the hospital to be evaluated. I had a fever, elevated blood pressure, and, of course, a little bit of fluid- no cyst. They sent me home and told me to 'keep myself comfortable' and follow up in the office the following week.
November 11th I went to my scheduled pelvic us, mammogram and breast ultrasound. (Was going to cancel the pelvic since I had just had one 10 days prior- but decided another look see couldn't hurt anything- especially since I felt like there was something still there). By the time I left that place, I felt like someone should have, at least, bought me a drink...ghheeez... The pelvic ultrasound showed an irregularly shaped debris filled cyst and moderate to large amount of fluid. Mind you I had just been to the hospital 10 days prior where there was a 'little' fluid and no cyst.
I met with my doc this morning and my frustration level is through the roof. She tried saying that she 'didn't know why there was so much fluid now', 'that it could have been the difference in the way I had been sitting' (even though you're flat out on your back for the us),' and 'that the us isn't reliable'. I asked her, "then why do the us if it isn't reliable ?". She suggested it 'might be endometriosis'- but back in February during the first lap (and hysteroscopy and D&C) they didn't find a trace of it. In the end, she suggested we do another exp. lap- reluctantly.
After all of that info- my question(s) is this: Should I be concerned? The tech showed me the cyst...it is stretching my ovary and I could see the 'junk' inside of it.- I asked if it is septated and she said 'you could say that', and yet the doc. made me feel like I was totally over reacting.
I guess since they had me thinking the first one had a good chance of being malignant and then they found nothing, I've carried that concern with me all along...Do you think having the exp. lap is an uneccesary risk, or is it a logical step in getting to the bottom of this? Should I be concerned that there is something more sinister at work here than 'just cysts'.
Any advice that anyone can offer would be so greatly appreciated at this time...words can't say how confused I am...I'm trying to be proactive, and remain level headed- but it's getting increasingly difficult...
Thanks for letting me ramble...I'm just not sure what the right thing to do is, at this point...
Very sincerely,
Ericka
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  #2  
Unread 11-13-2003, 11:20 AM
Ovarian Cysts or ???...advice needed...

Ericka my thoughts are with you. I haven,t a clue whats going on in your insides but the fact that it keeps on happening surely means that SOMETHING NEEDS DONE . You will have to be very persistant and keep nagging everyone concerned until something is done.least ways thats what i would do. very best of luck Heather
  #3  
Unread 11-13-2003, 05:24 PM
Ovarian Cysts or ???...advice needed...

Ericka - -

That the cysts come and go is probably a good sign since cancer doesn't come and go. On the other hand it does seem that something fairly painful and unpleasant is going on insude your pelvis!

--Has your doc done a CA-125? This test is an ovarian cancer marker, However, endometriosis can also raise the CA-125 quite high! ((AudreyS)) and I both had CA-125's around 200 before our hysts. She had endo,adeno and a few other things (but no cancer), I had Stage 1 ovca, and my Mom who was dxed the same time, about - had a CA-125 of only 100 - and stage 3c ovca! So it is not a perfect test, but it can help determine if "something is not quite right."

--You ought to work out an arrangement for "stat" ultrasounds, or have them scheduled around your period. With my ovarian cyst, we had ultrasounds and CA-125's drawn at a couple key points in my cycle. We could see quickly that this thing was not functional (fluctuating with the cycle) and therefore a decision to do surgery was made.
Dorrie
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  #4  
Unread 11-13-2003, 05:59 PM
Ovarian Cysts or ???...advice needed...

Thank you for your replies...
My doctor hasn't done the Ca 125...
I was under the impression that was to monitor follow up in a definite diagnosis...I didn't think to ask for it...
I certainly hope that these are just functional cysts- but I'm beginning to worry...the way the tech described this one, it didn't sound too pretty.
Well, thank you...I'll keep pluggin' along...hopefully, I can get to the bottom of this and find some answeres...
Sincerely,
Ericka
  #5  
Unread 11-14-2003, 09:59 AM
Ovarian Cysts or ???...advice needed...

Ericka:

I would look for a second opinion from a GYN-oncologist anyway. What does your doctor plan to do if she gets in there, does find the unthinkable? There's ample evidence that outcomes are better in ANY GYN cancer if an oncologist does the surgery -- at the very least, it saves a second "staging" surgery if cancer really is found on this lap.

As (((Dorrie))) said, I'd had a giant ovarian mass (wasn't all that "cystic") and an elevated CA-125. Although I'd had documented endo, it had always been considered "mild" or stage I on the most recent lap (about 8 years prior to the hyst). I'd always just lived with it.

However, at my surgery, stage IV endo was found, which will also elevate the CA-125 (as will colon cancer). Luckily, I did have my surgery performed by an oncologist, who was able to remove the mass without rupturing it. Rupture would have "seeded" endometriosis (or cancer, if that's what it had been) all through my pelvis. Obviously, I'm quite relieved that it didn't happen that way!

Ask your GYN about a referral for a second opinion to the GYN-oncologist. If she is "reluctant" to investigate something that is causing this much trouble, then maybe it's time for a fresh point of view anyway. Polycystic ovaries can lead to this sort of pattern as well -- but you shouldn't have to live month-to-month this way!

Keep us posted, OK?

audrey
  #6  
Unread 11-14-2003, 11:05 AM
Ovarian Cysts or ???...advice needed...

thanks...my husband contacted a former prof. of his from college that has many medical contacts in this area for a good reference. So, I think I will follow that lead for a second opinion. Something is definitely not right inside...it's just a matter of finding out what and fixing it.
thanks again, for the replies...I appreciate all opinions- it's good to hear others' ideas, as they might be something I haven't even considered...especially, from those who have been in similar situations (though I know mine doesn't nearly compare to those who are in this forum)...
Sincerely,
Ericka
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