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Take it all out, keep some, well...lets double check Take it all out, keep some, well...lets double check

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Unread 02-10-2012, 09:10 PM
Take it all out, keep some, well...lets double check

Last Monday I was told I would need a TAH and removal of my left ovary. I admit it was a bit of a smack in the head. All the more dizzying because I am "moonlighting" in a hospital as a chaplain intern. Nothing like stepping into my 'clients' shoes.

Why?: age 50, 18month with just 1 or 2 episodes of spotting, 5mm+ cyst on left ovary sustained over 9 months, thickened uterine lining, then discharge and bleeding in the prior month, CA125 of 40 which is borderline.

Honestly, I thought menopause had been kind; two years of hot flashes and an appreciation for the power of gravity were the things I could see. A vague sense of bloat which seemed is as likely to be IBS as anything else.

Endometrial biopsy and saline hysteroscopy (both less awful as tests than I feared - though .25mg of Xanax made that a sure thing) showed everything was fine. With that last test, the suggested course of action changed to D&C and laproscopic removal of left ovary only. Though if the frozen section biopsies show anything off, out it all goes.

Confirmed this with a 2nd opinion from a gyn oncologist (in one of the swankiest doctor offices I have been in - upper West side NYC - wow). That doc suggested another blood test (OVA1) as a way to feel more confident about the results of the operating room biopsies that will be done (I was told they are only 80% accurate).

Of course, now I get to worry that the OVA1 will come back showing a problem, or worse still, not be conclusive. I "own" this decision to leave my bits in place .. or not. Though, honestly, I feel inadequate to this task of risk assessment. Hmmm.... increased likelihood of prolapse and osteoporosis...or the 1 in 70 chance of ovarian cancer by age 65. What were the other ones....? (Maybe we should start a thread of all the stats the doctors tell us.

I have an 18 year old in her last year of high school. I am very conscious of how I communicate about this to her. I want her to see me getting information (LOVE the second opinion video on this site), see what it means to piece this all together, and to acknowledge all the emotions that emerge. Though I may spare her the good cry that I know is brewing inside right now.

So I get blood test results 2/15. Surgery scheduled for 2/29. Just got the FMLA papers to fill out for work. I feel like that one phone call two weeks ago shoved me onto an express lane to the OR - less that it is fast and more that there are few exits.

I want to say thank you for all the information posted on this site; it has been really helpful. I have had a laproscopic removal of my gall bladder and a fix to an umbilical hernia but no other surgeries. I loathe the idea of abdominal surgery, but you guys made it clear that recovery is what happens.

If anyone has any suggested questions I should ask or things to consider, I would welcome them.

Good wishes and healing to all....
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Unread 02-11-2012, 01:23 PM
Re: Take it all out, keep some, well...lets double check


Ah ha - the statistics. Take it or leave it? I looked at my family her-story and my personal medical past and decided to keep my ovaries. Breast and ovarian cancer are not conditions my family suffers from, but heart disease, stroke and osteoporosis are.

Everything else came out - multiple uterine fibroids, adenomyosis and abnormal paps determined that path.

Feeling great and no regrets. I wish the same for you. Cheers!
Unread 02-12-2012, 09:04 PM
Re: Take it all out, keep some, well...lets double check

Anraku - My TAH BSO was for a large ovarian cyst (12 x 9 x 11 cm) - about the size of a very, very large great fruit. I also had multiple fibroids. They gave the CA125 test, which came back normal, and the OVA1 test which came back elevated. My surgeon was an gyn onc. Pathology was done during my surgery - all tissues were benign. I was grateful for the gyn onc surgeon because if it had been cancerous, he could have done the proper further analysis.

I know it is hard to do, but don't get a head of your diagnosis. Take this one step at a time. The CA125 and OVA1 blood tests are not diagnostic. See what they say and go from there with your doctor's input. False positives can happen with both tests. Make the decision that is right for you and your health.

(((Hugs))) to you...

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