The needle in the haystack

Today has been a wild day.  We were hit with a big snow storm that dropped around a foot of snow over a 12 hour period.  Today was also the day I met up with my gastroenterologist to discuss the results of my latest endoscopy (taken Jan 14) and the pathological report.

Blog over. Just kidding!

My mom was with me during the appointment.  The gastroenterologist opened my file and started the meeting, “we are here to discuss the pathological report of your recent repeat endoscopy.  I took a million biopsies.”  Me being a gullible person replied, “Wow really? That’s awesome”.  She was like, “no, I’m just kidding”.  I then realized now unrealistic it would have been to take one million biopsies. Haha.  She then went on to let me know that she took as many as she could in a half hour period (which turned out to be around 50).  She took biopsies from various parts of my stomach.  She read the article that I had emailed to her previous to doing the repeat biopsy and took more samples from areas she would have normally not taken from.

Then the news came.  We found two areas of carcinoma in your stomach.  One in the proximal fundus stomach of the stomach and one at the gastroesophageal junction of the stomach side.  They are very small and contained.  I asked her what classification of cancer it was, and she said ‘Tis’.  For those who don’t know about the stages of cancer (I also didn’t know until about 7 hours ago), I have attached a chart and diagram below regarding the stages of cancer as well as a diagram outlining what she found.  It was taken from


Table 1.
TNM System for Staging Gastric Cancer
Primary tumor (T):
Tis = carcinoma in situ: intraepithelial tumor with
out invasion of lamina propria
T1 = tumor invades lamina propria or submucosa
T2 = tumor invades muscularis propria or subserosa
T3* = tumor penetrates serosa (visceral peritoneum)
without invasion of adjacent structures

T4**,*** = tumor invades adjacent structure


My initial reaction was, ‘AMAZING! You found it!’.  One research article I read said that to have at 90% chance of finding the signet ring cells, you would have to take 1760 biopsies, which is unrealistic. I wanted to give her a high five but thought that was a little unprofessional.  I was fairly certain that there would be cancer in my stomach once removed but there was always a little bit of doubt in the back of my mind.  It sounds weird but I was actually really relieved.  I knew that I would be upset if my stomach was removed and nothing was found on the pathological report. This just confirmed my decision to have my stomach removed.  Also the decision has now been made for me that I should get my stomach out now vs. later.  The gastroenterologist was just as amazed that something came up on the pathology report because from what she saw in the endoscopy, everything was normal.  Who would expect a 29 year old to have stomach cancer?

My genetic counsellor and my gastroenterologist have been in talks (without me knowing).  They have also consulted with the gastroenterologist in Toronto who did my mom’s surgery (and will likely do mine).  They were waiting for me to have a face to face appointment to have the diagnosis delivered.  I have emailed my genetic counsellor to discuss the next steps.  Whoever can get me into the operating room first will likely be the surgeon who does my operation.   Could be soon, could be later. I’m not messing with this cancer.

I am still in awe that she found the cancer cells. I feel like my gastroenterologist should go buy a lottery ticket tonight.

4 thoughts on “The needle in the haystack

  1. Pingback: The Full Circle | Cytosine Deleted – Life with the CDH1 genetic mutation

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

  3. Hi Rachel, just found your blog and I can’t stop reading. Just got my positive CDH1 results two weeks ago after genetic testing to follow up on a breast cancer diagnosis with no known family history. I was hoping you could send me the article that you provided to your gastroenterologist regarding biopsy sites. I haven’t met with one yet – taking care of the known breast cancer first – but want to be prepared for when it happens. Thanks!

    • Hey Erica, so glad you found my blog. I am sorry to hear about your recent breast cancer diagnosis. This must be a stressful time for you to have all this loaded on you all at once. The link to the article is under my “Interesting reads” section. The article is now 7 years old but at the time was relevant. The best resource with scientific evidence at this time would be the: “Hereditary diffuse gastric cancer: updated consensus guidelines for clinical management and directions for future research ” also in that section. It was published by leaders in CDH1 research.
      I wish you all the best and please feel free to reach out to me should you have any other inquiries.

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