Friday, April 18, 2014


I haven't felt like blogging about it, but I've been having some abdominal pain.  After the surgery at Christmastime, this was especially worrisome to me.  I'm now almost 4 months out from my surgery, and the concern is obviously that they didn't get it all, that something has recurred.

I saw a specialist here last week, and he expressed some concern about the quality of the pathology work that was done at the time of my initial surgery.  He encouraged me to push for a better, more clear report.  He also scheduled a pile of tests--vaginal ultrasound to take a look at my ovaries (there was a cyst that measured 1/2 inch, which could explain at least some of the pain), cancer market blood test (all within "normal" limits, but not zero, which would be my preference), an MRI (scheduled for this weekend, but I'm going to cancel it, for reasons I'll get to in a minute), and a colonoscopy (not yet scheduled).  The doctor knew how worried I am, and he assured me that he thinks I will be fine.  "You're lucky, you know," he said.  "You had a doctor who scheduled the test [the original CT scan which found the tumor].  You got the surgery.  You are the best case scenario."

And I am, and I know that, and I am trying so very hard to hold on to the idea that I am LUCKY.  Lucky to live in a place with good medical care.  Lucky to have doctors who are cautious.  Lucky to be able to afford to access good medical care.  Lucky to have options available to me.  But given what has happened today, I'm having a hard time.

I went back to my original surgeon about the pathology report.  He said he would follow up with pathology.  I expected it would be some time before I heard anything, but I got an email from him today.  I won't get into too much detail, but basically, things are even MORE ambiguous now.  They went back and recut the tissue samples, and reanalyzed everything.  I was assured at the time of my original surgery that my surgical margin was negative (important with tumors, because if they are not, more surgery is indicated), but now the pathologist is saying the margin is a "true positive margin."  Why they didn't discover this at the time of my original surgery, I do not understand.  My surgeon stands by his original assertion that I don't need additional surgery, but I also don't understand that.  He said he would talk to me about it if I was "concerned" about it (duh.  Who wouldn't be??!), but then I got no response when I emailed back to inquire as to a good time for a call.

I already know I want a second (third? fourth?  I'm talking to a lot of doctors about this) opinion, so today I got in touch with someone who is an expert in this type of problem.  His office says he's willing to review my case to provide recommendations.  However, they recommend a followup CT scan at 4-6 months after initial surgery (my surgeon recommended 1 year).  They'd like to see a CT now, and prefer that to an MRI.

Given not only my current pain, but also everything that cropped up today in my inbox, I plan to cancel the MRI and get a CT scan instead (my doctor here preferred the CT scan, too, in terms of quality of information, and only recommended the MRI to reduce my exposure to radiation).  I would have preferred the MRI, but given the new curveball from today, I think the CT scan makes more sense.  Then I have it to send to the "expert" for review, as well as for the purpose of informing my doctor here.

I AM lucky, and I have so much to be thankful for.   Nonetheless, this is hard.


Anonymous said...

Lots of good wishes to you and your family.

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Jane said...

So sorry to hear about the pain and the ambiguity surrounding all of this. I hope the CT is clear and you get some final answers and relief.