April 06, 2015

Possibly '1 in a Million', In a Scary Way

So I went to my gyn about 10 days ago because I was having some intermittent spotting, which I didn't experience while nursing A.

He did an ultrasound, and everything looked normal aside from a fibroid (I think he called it "small") which wasn't a surprise, because the RE had mentioned it a couple years back during a hysteroscopy. Then he did an endometrial biopsy.

I was so unconcerned about it that I had completely forgotten I was even waiting for the results. Until he called.

It is never a good thing when your doctor himself calls.

The pathology report says I have an en.do.m.etrial s.t.ro.mal no.dul.e. (People I know may be searching online, and I prefer this blog to remain relatively anonymous, hence all the periods.) The problem with that is, it turns out, a benign no.dul.e can't be differentiated from a definitely-not-benign end.o.m.et.rial s.t.ro.mal sa.rc.om.a without doing a hysterectomy and thoroughly testing its margins.

En.dom.et.rial st.r.o.mal t.um.or.s. are diagnosed in (no exaggeration here) 1 to 2 women per million each year. Not exactly the way I want to be "one in a million".

One of the silver linings of a decade of infertility is that it's taught me to take charge in situations like this. I've found an amazing woman who has given me some great advice and put me in contact with a very highly respected gynecological pathologist, so I'll be contacting my doctor's office tomorrow to have my pathology slides shipped across the country for a second opinion. I also have an appointment scheduled with a gynecologic oncologist for next week. If the second opinion pathology report does not have good news, I may wind up going to an expert out of state instead, given how rare these things are.

From the research I've done, I do think there is some reason to be hopeful that the initial diagnosis is a mis-diagnosis. The pathology report does not mention any testing for a few things (including estrogen and progesterone receptors) that are commonly done when this is a potential diagnosis. And the report describes my tissue as "tan brown" but does not mention yellow. I've seen E.S..Ts described as "yellow tan" or yellow, but not "tan brown". Also, my uterus looked like a normal size and shape on the ultrasound, while in 70% of cases of E.S.sa.rco.ma, it's usually enlarged and with a thickened lining. (My lining was thin.)

So like I said, there is reason for hope. But either way, I think a hysterectomy is in my very near future, which pretty much settles the question of #3 on R's side of no.

You can imagine how freaked out I've been about all of this for the past few days.

Then a relative came over unexpectedly today and dropped a bombshell on us. Because of the nature of it and since this blog is not 100% private (I've posted pictures and details that people who know us in person could recognize), I won't go into all the details here.

But suffice it to say that it has rocked our worlds, especially R's, our family will never be quite the same again, and there are yet more doctor's appointments we're going to need to have that we never in a million years would have expected to have.


MrsSpock said...

I am so sorry, and hoping that your hunch is correct, and it's not the S-word.

Heather said...

Wow, so scary! You are doing all the right things though by going to the best doctors you can find and educating yourself. You'll be able to make the best decision possible when you get more information. Hugs to you.

Libby said...

Ugh! But good for you that you had it checked out and know to go looking for second opinions. Please keep us posted, and I'll be hoping everything is ok.

I also get it about keeping things more private in blogland. I've taken down most of my pics and have removed some posts. I've not told anyone about my site, but you just never know.

AP said...

Been thinking of you since I've read your post- any news? Hope everything looks okay!

Emily Erin said...

Oh my goodness Rebecca-- lots of prayers heading your way. I hope that the second opinion comes back that the first was a misdiagnosis, and am so sorry that there is more upheaval in your life! Hugs, prayers and chocolate, STAT!

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