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SARAH: re: Bad, bad news

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Dear :

I hope you found some comfort in reading Sonja's recent post about her

diagnosis and successful treatment for a malignant ovarian tumor.

However, do bear in mind: that just because an ultrasound report mentions

that YOU--or any woman -- has a " complex ovarian cyst " doesn't definitely mean

it's cancer.

Sometimes........... it ain't necessarily so. (As I-- and other women-- know

from personal experience.)

Based on the appearance on ultrasound, the mass certainly could be malignant.

Sure. But, it also very well could be BENIGN.

At this point, it is NOT " medical certainty " that you have cancer. That one

thing is certain!

According to Dr. , MD author of the book __A Gynecologist's

Second Opinion__ " a sonogram cannot be used to make a definite diagnosis. " --that

is, to differentiate between an irregularly shaped BENIGN cyst, and cancer. "

Dr. further states: " No test can flawlessly predict benign or

cancerous cysts... " Therefore " ... surgery will be required to remove any

questionable

cyst SO THAT A DEFINITIVE DIAGNOSIS CAN BE MADE. " (Caps are mine, for

emphasis, not his.)

No one should be making definitive pronouncements, at this stage.

Like gg, and Gerri..... I, too once had a large complex ovarian cyst

discovered on ultrasound--actually something first identified as a " large

septated

ovarian cyst " which a month later on ultrasound was described as a being

" complicated cystic mass. "

That second ultrasound report stated very plainly: " This does NOT represent a

simple cyst. "

I was told by my gynecologist that the mass (as well as THE AFFECTED OVARY)

would have to be surgically removed.

It certainly did have the appearance of a cancerous ovarian mass. And it

wasn't going away.

Naturally, I was very frightened by my doctor's ominous tone. I became even

more anxious after learning of my elevated CA-125 results. (Of course, it was

only later in my research that I learned the CA-125 very often gives false

positive results.)

I somehow found the good sense to request of my gyno--that my ovary NOT be

removed -- in the event that the mass (unexpectedly) proved to be benign.

My gyno wondered aloud how could I even concern myself with such a

hypothetical possibility, given the serious findings on my ultrasound reports.

And why

should I worry about one less ovary? I did have another functioning ovary to

take over for the one the wanted to remove.

He even tried to persuade me to his way of thinking--- which was that even if

the cyst proved to benign--removing my ovary would eliminate ALL FUTURE

cancer risks to that cyst-prone ovary of mine.

Sure, it would----but, along with the risk-- it would also eliminate my

OVARY--unnecessarily, I felt.

He felt that I was being a bit reckless. But, of course, I thought HE was

being a bit reckless, not considering all possibilities.

Eventually, he (reluctantly) agreed to abide by my wishes.

I had to put my request in writing: " DO NOT PROCEED WITH THE REMOVAL OF THE

OVARY until the PATH report comes back (during the actual surgery) with

documented ovarian malignancy. "

Anyway, I'll cut to the chase here....

During my surgery, a biopsy of the ovary was obtained. The big scary cyst wa

s aspirated....and son of a gun, that ugly thing in my ovary turned out to

be.....nothing more than a big 'ole benign cyst. What a relief.

And 'ya know--this kind of thing happens all the time.

The best thing for you to do when you receive a potentially serious diagnosis

is GET A SECOND--and even THIRD--and sometimes FOURTH opinion. Ask lots and

lots of questions, . And ask specifically on what evidence these doctors

are basing their opinions.

As Sonja suggested, I'd also be sure to ask whether another surgeon might be

able to perform the bikini incision, which you prefer. It doesn't sound

unreasonable.

It's appropriate to stay hopeful. As best you can, try to use all your

emotional and physical energy to be proactive on your behalf.

Keep us posted--we'll be keeping you in our thoughts.

Best wishes to you,

Roma

In a message dated 1/27/2004 8:44:12 AM Eastern Standard Time,

sarahjmccoy_sj@... writes:

Well, the specialist that I went to see today gave me some very bad

news. The " simple fluid-filled cyst " that my GP assured me I had

(thereby making it OK to wait 2 weeks to see the specialist) is

nothing of the sort. It's a complex ovarian tumor. Possibly

malignant. I've now been referred to a gynecological oncologist

(whom I could have seen two weeks ago!!) for further consultation.

AND, they won't be able to even do a bikini cut, they'll have to do a

vertical incision, the length of the tumor (14cm or so). Life

sucks. And it could get exponentially worse within the next few

days...

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