IC mistaken for fallopian tube cancer

[icnmgrjill]

I received this email from an ICer also named "jill" today... that I think is worth repeating and sharing with you all. Though IC is not directly related to cancer, a thorough diagnosis and workup is essential. - Jill O.

I just wanted to let you know that I had IC in my 20s, and I was
being treated for it again in my 40s. My symptoms were identical to
IC. Turns out it wasn't - it was fallopian tube cancer, and it was
pushing on my bladder and giving me all of the same symptoms. After I
had two surgeries (they discovered it during a hysterectomy) those
"IC" symptoms went away. Every woman with IC should have a CT scan, an
ultrasound, and a CA125 blood test. I suffered with incontinence and
what I thought were flares for two years until they thought I had
fibroids. I had none of the symptoms of cancer, but all of them for
IC.

Jill

[ICNDonna]

My father had symptoms very similar to what I was experiencing when I was first diagnosed --- and he had bladder cancer. That's why having a definite diagnosis was very important to me. I shared my concern with my urologist and he put me on a fast track for diagnosis --- and I breathed a sigh of relief when I was sure about the IC.

I hope the other Jill is going to be okay.

Donna

[HGC]

The only problem with a CA125 test is that if you have endometriosis(which I do have) fibroids, or any other pelvic inflammatory disease the test is not accurate - it will come back elevated.

[KarenAnne]

Jill, This clearly demonstrates why it is so important to get a thorough work up for suspected IC. The CT scans, ultrasounds, cystoscopies, bladder biopsies....all worth it. Thank you for always giving us great tools to work with. Oh, & I love your videos, they are great! That is why this website, & you, are the best!

[Briza]

I know that I have heard of this test before and vaguely remember during my IC dx process was something I considered having done.
If anyone would be so kind, please post what this test is for, to refresh my memory and to inform others as to what the results of this test can show. Thanks!
I never did have the test ...things were so tumultuous during that dx period I don't remember why I didn't have the test. Probably was just on info/testing/symptom overload and just didn't get around to it. I have an upcoming appt with my gyn and would like to have this test done, so any info posted is much appreciated!:)
I too, hope that the Jill who shared her story is doing better now that she has a proper diagnosis!