The results are in! One of many…

Good news! The biopsy came back negative. Yay! But the adventure continues….

I was booked for 3:30pm and arrived with plenty of time to spare.  I know how it can be difficult when you have a fully booked schedule and your patient doesn’t show up on time.  Oh, and that is the patient who is going to ask you a whole bunch of questions.  And it’s their neck, low back, both of their shoulders, and little toe (which is a new problem) you have to treat it all in just 10 minutes.  Needless to say, I’d rather be early for my appointments.

We saw the Gastroenterologist at 4:15pm.  I was glad we were taken in a little later because Brandon was on his way from work and was stuck in traffic. He arrived right at 3:30pm but I was worried he was going to miss the appointment.  We waited the extra time because the Gastroenterologist took a person booked just after me before me because she knew it was going to be a quick appointment and that she would have more time to spend with me.  I really respected that.   On top of that she had had a chaotic day.  Due to the cold weather, a watermain burst in two of the local hospitals she worked at which flooded the floors and she had to scramble to get her patients looked after.

At 5:15pm I left the office.  Let me re-iterate, I left at 5:15pm!!  That is a whole hour later then when I was taken in…I had an hour with a specialist…not to mention the best one in our region.  I figured I would have about 10 minutes with her to ask all my questions, get the pertinent information about my biopsy and we would be whisked out the door.  I was amazed, she spent a full hour speaking with me, my mom and Brandon.  She showed me pictures of the inside of my stomach and discussed the pliability of it.  I learned that you want good pliability inside your stomach vs. a leather bag like stomach.   The inside of your stomach looks just like the text book pictures.  Pink and round with some striations.  I was able to ask ALL of my questions and then some.

I asked her when she would be booking and she said, 4-6 weeks. At that point, I was a little shocked about how fast I could get it out.  It makes sense though, because it would be treated like a regular cancer case they must get you in quickly.  I’m not ready for 4-6 weeks.

I recall my mom telling me that the Gastroenterologist took ‘random’ biopsies’ during the endoscopy.  I asked the doctor where she took the biopsies from because some literature has suggested to take a minimum of 30 biopsies from various anatomical zones –   antrum, transitional zone, body, fundus, cardia.  She said that she did not to that many or from some of those zones (not typical of a routine endoscopy).  She also asked if I could email her the journal articles I was reading.  It’s amazing she wanted to see the articles I had read and I got her personal email….Wow!!

After the discussion, the Gastroenterologist thought it would be best to do a re-do and take more biopsies and also allot more time for the endoscopy to be really thorough.  Mom and I thought it would be redundant to do it again, given that I would likely get the stomach out this fall and the result will likely be negative again.   I also didn’t want to take an appointment slot for someone else who may really need an endoscopy completed.  The Gastroenterologist preferred that we did it again because then if it was positive, the surgery would be pushed ahead instead of me waiting until this fall.  All and all, too much screening can’t be a bad thing in this case.

The specialized centre for CDH1 mutation carriers is in Toronto.  There is a great clinical team who has much experience dealing with CDH1 mutation carriers.  The pathologist is also specializes in analyzing the stomach post gastrectomy.  My mom had hers done in Toronto. It seems to be the place where it’s at!

However, it is more convenient to do everything in Hamilton.  I have developed rapport with the Gastroenterologist here.  She is a wonderful woman and a specialist in her field.  She even offered to do my follow ups if the Gastroenterologist in Toronto does my surgery.  On a side note: Gastroenterologist only receive $4 for clinical visits.  That’s 3x less than what we received for physiotherapy visits in the past (makes $12.20 look good!).  This is becoming a tough choice.  I will wait until I meet the Gastroenterologist in Toronto before I make my final decision on where to do the surgery.  Both of the Gastroenterologist know each other so they could always share notes…

Anyways,  I’m set up to go back on Tuesday for another endoscopy.  Nothing to eat or drink Monday night after midnight…sedation and more funny stories await!

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3 thoughts on “The results are in! One of many…

  1. I’m glad to here that you had such a uniquely great visit with your specialist! Sounds like you’re in good hands. I’m thoroughly impressed by this story yet not at all surprised that your experience was good. Your focus becomes your reality and your positivity is hard to come by. Xo

  2. Pingback: Whooaaa We’re halfway there – 6 Month post op | Cytosine Deleted – Life with the CDH1 genetic mutation

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