April 2021

April 2, 2021

Hey everyone! Quick update. I've got an endoscopy scheduled for April 26 with the advanced endoscopist (Dr A). Dr W (surgical oncologist) will also be there, for "informational purposes". I have been assured that this will NOT turn into a surgery that day & I will be able to have discussions with whomever I need to before that's even a thing.
The goal of this endoscope is for Dr A to remove the polyp. Hopefully, he's able to do that. There's potential that this will be a multiple attempt situation.


April 26, 2021

Today, I had an endoscopy (scope down the throat) with the advanced endoscopist, Dr A, who is now practicing with her existing gastroenterologist’s practice. Dr. W, who performed both her colon removal / rectal resection as well as her ileostomy (attach the bag) and reversal (remove the bag) attended the procedure. However Dr. A was in the driver’s seat, and Dr. W was “riding shotgun” (his words).
The hope was that Dr. A would be able to remove the pre-cancerous (not yet cancer) polyp in my duodenum with the scope, avoiding a full-blown surgery on her duodenum.
Unfortunately, both Dr. A and Dr. W agreed that this polyp, which we have named “that fucker,” cannot be removed with an endoscope. The polyp is too big (7cm), and it is too firmly rooted into the very thin wall of the duodenum. A surgery is going to be required to remove "that fucker".
That is the bad news: I am facing another surgery to remove the polyp. There were so many tears about this at first. Shaking, tears, and screaming "fuck".
The good news is that the polyp is DEEP into my duodenum, so a removal of the entire duodenum is not going to be required. Nor will this be a “whipple procedure” to remove the top of her duodenum (which was the super scary procedure we were worried about). This is going to be a resection of my duodenum, which is a partial removal. The plan is to remove only the section of my duodenum in which "that fucker" has taken up residence.
A lower duodenum resection is still a risky procedure, but not nearly as risky as a full removal of the duodenum and the associated pancreatic ducts. The surgery will probably take about three hours, with 3-4 days of recovery before being released from the hospital. Liquid diet for the first 24 hours, then whatever she can tolerate (low-fiber) from that point onward. NO bag of any kind. NO follow-up procedure, barring any complications.
I’ve attached a photo where I marked the section to be removed in AQUA. Those with a keen eye will note the presence of a major artery and vein that provide circulation to the entire lower digestive system – this is what makes this procedure risky. Dr. W described it as taking out a section of plumbing BEHIND several other sections of plumbing that we do not want to disturb. He has performed this procedure before, and plans to perform it robotically (as he did with my colectomy).
When? Probably June. We have a weekend getaway for my 41st birthday planned in May, and I want to go on that weekend getaway (damn it)! The past 18 months have quite frankly sucked, and Dr. W agrees that June sounds like a good time to have the surgery.
How does this development impact my long term prognosis? All of the doctors involved agree that this polyp has been YEARS in developing. This is not a “spread” of anything from her colon and rectal polyps that were cancerous. This is a polyp that will, if left alone, turn into cancer at the other end of her GI tract, in her duodenum.
Remember my genetic condition, MAP (https://www.cancer.net/.../mutyh-or-myh-associated-polyposis)? That’s still the root cause here. My GI tract will continue to produce polyps for the rest of my life. We got the big ones out down south by removing my colon and part of my rectum. We’ll get the big one out up north by removing part of my duodenum.
Will this be the last major surgery I ever face? Hopefully! But of course, that would be the best-case scenario. For the rest of my life they’re going to be doing scopes and scans to try to find these polyps and get them out before they turn into cancer. If all goes well, my doctors will find the polyps before they become problems and be able to remove them with the scopes… forever. Or until DNA immunotherapy becomes so advanced that they can edit out or suppress my genetic condition. That’s the long-term hope here, but rewriting your genes is still a very new and developing science.



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