Going for Further Advice
In my last update, I said that we’d had a 3D version of the octreoscan done, but we hadn’t heard the results of that yet. We’ve now heard those results as well as received more information from MU pathology. In a lot of ways, we’re continually learning that we don’t know much, and that’s the biggest point of this e-mail.
MU pathology did some more testing, ultimately concluding that the mitotic rate of the carcinoid was as Poplar Bluff had first indicated. That means it’s growing faster than normal for this type of tumor, but it’s important to remember that ‘normal’ is extremely slow relatively speaking. It also indicates that the carcinoid may be more vulnerable to chemotherapy than normal. My first report about mitosis said the info could be “good/bad/incorrect”. We’ve eliminated incorrect, so it could still be good or bad.
The SPECT OctreoScan also leads to mixed news. All along, there’s been intrigue over whether the lymph nodes are involved or not. In almost every case, it’s been mentioned that it might be adrenal gland too, ultimately to only come back to the fact that it’s lymph nodes. Early on, there was also hope that the lymph nodes were simply enlarged due to surgery, but that’s proven false. The SPECT scan doesn’t really clear any of that up. The radiologist believes that it does suggest adrenal gland involvement, and possibly the spleen, but basically isn’t certain. Upon reviewing the scans, our physician doesn’t believe that to be the case, he believes the lymph nodes behind the stomach are the issue (based on the CT scan). We’ve also had another highly respected retired radiologist review the scans informally, and he also tends to believe that it’s lymph nodes and not adrenal gland/spleen.
In every case, however, they indicate that we should clearly seek opinions of those who see more of this type of cancer and we have formally started that process. We’ve sent complete medical records and the scans to Johns Hopkins, where a surgical oncologist will review and contact us with his opinion & recommendations. He received the records this morning. We’re also headed to New Orleans for an appointment on Monday, June 26, with a physican at LSU who is a carcinoid expert. Between those two places, we hope to collect (and be able to comprehend) more information at which point Sarah will determine which treatment option(s) she’s most comfortable with.
Also, I previously indicated that summer is here, so time to get ready for football season. MU has obliged by releasing some football news. We’ll be beating the Ole Miss Rebels starting at 11:30 on Saturday, Sept 9, on Fox Sports TV (but you should come to Columbia for the game). There will also be a blood-letting on ABC on Saturday, Nov 25, at 11:00 a.m. as the Tigers beat the mythical shoe-wearing birds (but you should come to Columbia for the game).
Jack Thayer had his first birthday last week, pics of that are now on our site. Some other pics of the kids and of Adelaide’s dance camp are also newly added. In addition to dance camp, Adelaide is also scheduled for soccer camp and swim lessons this summer.
Here’s some funny stuff that Adelaide’s been saying:
When looking for someplace level to set up a game, I told her “Here, you can use my belly, it’s flat”. Her response, “no daddy, it’s fat, not flat!” Smart-aleck kid.
Word confusion:
gotfor = forgot
Cumbalia = Columbia
poskiple = popsicle
feelhead = forehead (because that’s where you feel to tell if she’s feeling well).
mazagine = magazine
muggilan = mulligan
stinky = jayhawk*
smells like cat poop = jayhawk*
*and despite many’s opinion, it’s not I that’s teaching her this stuff. I swear. just comes naturally, I guess. and on a side note, screw ku.