So, I’m packed and ready to roll to Minnesota to visit the Mayo Clinic for the next week. I wanted to write a quick post to let you all know I’m going and to check back frequently as I’ll be updating as I go. Don’t forget to friend me on Facebook as well (see the left side here to friend me). I figured out how to put up pictures from the Crackberry straight to Facebook, so I’ll update that often with the Mayo’s awesomeness.
I’m very much looking forward to getting some answers this week. The hardest part about all of this has been getting information in teensy little morsels and then trying to google it to ask the right questions.
One sticking point right now that we’re working on is that when the Oncologist and the GYN both came in to my room the morning after surgery, they both, (separately, mind you) told me that the left lymph node area would be sore because they biopsied it. I know I’m not crazy, because Christina heard all of this too. Since I KNOW she wasn’t drugged or nuts, even if I was, I’m pretty sure this was not a hallucination.
One of the requirements for Mayo is that I have to hand carry all my records, including my op notes, slides and pathology to the Mayo. So, I picked those up yesterday and I of course read them. Right on the Oncologist’s op notes it says this exactly:
Preoperative Diagnosis:
Borderline Ovarian Carcinoma
Procedure:
Exploratory laparotomy, pelvic lymphadenectomy left, multiple peritoneal biopsies, partial infracolic omentectomy, diaphragmatic assessments. Staging procedure for ovarian borderline tumor.
Then, under the procedures part of the document, (I won’t type the whole thing, just this part about the lymph nodes so that you can understand my confusion)…
“We decided on the pelvic lymphadenectomy only because of the Pfannenstiel Incision and the patient’s small body habitus, could not get near the aortic nodes, but palpably nothing was out of the ordinary. Because of the likely low yield of metastasis and overall good survival, we felt that creating a new incision for the sole purpose of getting aortic nodes was unnecessary.”
Ok. So, now that you’ve seen that…we googled the hell out of lymphadenectomy and found that by definition, that means “removal of”. As in, there’s no lymph nodes there anymore. So, why on Earth would they tell me that they only biopsied it? Shouldn’t that be a “Hey, we cut an organ out of you that had some functionality…thought you should know.” Type deal?
The 2nd issue on the table is that the GYN told me that my Pelvic Wash pathology was clear. Apparently not clear enough, as she included this sentence in the summary to the Mayo Clinic:
“Washing showed “reactive cells”. Remainder path, benign.”
In the actual path report it says:
A single mildly atypical pseudopapillary cluster is present, favor reactive.
What the shit does that mean??? I read a bunch of other peoples path reports, and from all I can tell, that looks like the beginning of metastasis to me. That’s on my list of Q’s for the Mayo Clinic Geniuses.
So, anyway…I’m looking forward to getting some real answers. The trip is 10 hours, according to my handy dandy GPS system. I bought groceries for the trip, we’re staying at the Holiday Inn Express, which is connected to the Mayo by skyway. There’s wireless, so I’ll have the laptop, and I’ll be connected by Crackberry to Facebook and my email as well.
Drop me a line! I look forward to sharing answers with you as I get them. It’s a little scary that I’m so geeked up about this trip, but for once I feel like there’s a real shot at me finding out something important that will actually be helpful.
