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  #1  
Unread 07-07-2002, 04:02 PM
misdiagnosis

Hi!

I just wanted to share what happened with me pre-op, so that perhaps some others on this forum might be helped.

My GP, who did my pelvic back in October, placed me on HRT, though I was extremely reluctant to use it. I was on 2 mg. of Estradiol and natural progesterone. I began bleeding, in January, every 2 weeks. They were like regular periods, and not just "breakthrough" bleeding. This continued for over 4 months and I was calling the doctor every 2 weeks. She said this was not abnormal for being on HRT. I am 58 years old, btw, post-menopausal. After 4 months of this, and 4 months of me calling, she told me that she "felt something" when she did my pelvic and that perhaps I might have fibroids. She scheduled me for an ultrasound. I went in, had the ultrasound, and was not at all upset by this. Then I waited for the results. She told me that they were not good, that I had a "septated, complex, compartmentalized" ovarian cyst, and referred me to an OB/GYN but had me go in for a CA 125 test. I anxiously waited for the results of this, since she told me that I might have cancer. Then, when I got the results of the CA 125 (it was 97 with the high normal of 83) she told me I had an 80% chance of having ovarian cancer. She told me at this point that there were still chances that I would live from this. I was in hysterics by this time. Having ovarian cancer which had not been detected for over 7 months and maybe even much longer than that, was not good...

Well, to make a long story short, went to the specialist and he told me, after doing an in-house ultrasound, that he would be surprised if I didn't have a benign dermoid cyst, but that they would have to prepare me for having cancer also. Went into my surgery with lots and lots of anxiety, one month after this diagnosis and had a TAH because I had tons of adhesions, but it turned out to be a benign dermoid cyst. I just wanted to share this, because it put me through hell, and my prayers and support go to each and every one of you, because I have experienced just a bit of what each of you has gone through. But I also want to warn others that they might also get this kind of misdiagnosis!


Arlene in California
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  #2  
Unread 07-09-2002, 10:54 AM
misdiagnosis

I'd say you need to get a new GP. It sounds like she has a bad case of the jump the guns. I'm having surgery this coming Monday for removal of my ovaries (by a Gyn Oncologist) due to a mass on the left one. My regular gyn AND the Oncologist have very cautious about saying it's cancer or not cancer since the followup CAT scan wasn't conclusive. Utrasounds are not the best indicators of what masses really are. In fact, my last ultrasound showed something on the left kidney also, but a subsequent CAT scan (which give much better images) showed nothing on the kidney and is not conclusive on the ovary.

Also, the CA-125 is not a good diagnostic tool. My GYN Oncologist says that he has seen reading in the high three digits just from endo alone. He uses the test for tracking treatment effectiveness in patients who have cancer and whose levels were elevated (they are not elevated in 20% of ovarian cancer patients), not as a diagnostic tool. You can also get high readings from other things like benign cycsts. Her telling you that you have an 80% chance of having cancer based on a ultrasound and a CA-125 is unforgivable. I'd ditch her like a bad habit. Also, many 58 year olds dont take HRT, so she should have listened to your reluctance and not insisted you take it. There are estrogen creams for things like vaginal changes that don't have the same effect as regular HRT. Some women go through menapause with few problems and don't take anything.

I'm glad you're o.k. I'm sure it was great to find out that all your fear was for nothing, but annoying that she gave you a medically hasty diagnosis that wasn't based on sound evidence. The only right thing she did was sending you to the Gyn Oncologist for proper diagnosis.
  #3  
Unread 07-09-2002, 01:09 PM
Hi Arlene

I'm very happy you don't have cancer--but you surely went through hell to get to that point, didn't you? The speed of those first dire warnings did jump the gun. I think it's essential to know there COULD BE cancer involved, but this should come from someone more experienced in dealing with that--GYN/ONC preferably. Glad all turned out well in the end for you.
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  #4  
Unread 07-09-2002, 03:04 PM
misdiagnosis

s Arlene

I am glad that things turned out so well for you. Congrats!!!!
Unfortunately, one of the problems with ovarian cancer is that there is no perfect diagnostic tool, short of a surgical biopsy. I'm sorry that your GP gave you such a high percentage chance for having ovca. and scared you more needlessly. It sounds like the gyn onc gave you the most accurate info and that is why they are the specialist and not your GP or even the ob/gyn.
Anyone who thinks there is even a remote chance of ovca is very frightened.
Unfortunately it takes a surgical intervention to know for sure.
Enjoy your new lease on life!!!!

karenann
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