1 Year update

One year ago today, (gosh that went quick) I opened a can of worms / was the day I embarked upon this journey / was the day I stepped onto this crazy rollercoaster ride…

Today I’m feeling positive – but realistic (hence me describing it as a crazy rollercoaster ride) On my down days, I tend to think that I’ve opened a can of worms! I’m only human!

Basically, I sent an email to the genetics department here in Bergen, asking for more information as to how I would go about having a test done to find out if I carried the CDH1 mutation that runs in my family.

After getting the relevant information from the Doctors in England, I took this information to my “fastlege” (Doctor) in Bergen the following week, and requested a referral to the genetics department.

01.08.16 – Contacted the genetics department

08.08.16 – Referral from my Doctor

04.10.16 – Appointment with a genetics counsellor – Blood test sample taken

08.11.16 – Results from blood test – CDH1 mutation detected

30.12.16 – Meeting with genetics counsellor to discuss next steps (opted for screening)

18.04.17 – First endoscopy with multiple biopsies taken from stomach

10.05.17 – Meeting with surgeon to discuss option of having a Total Gastrectomy in the next few years

18.05.17 – Results from biopsies – Signet ring cell carcinoma detected in one of the samples taken. Decision made to have TG this year

14.06.17 – Second meeting with the surgeon to discuss the TG

21.06.17 – PET/CT scan (awaiting results)

 

As it currently stands, I am still scheduled to have my TG on the 26th September. I haven’t received the results from my PET/CT scan so I can only hope that no news is good news…

 

 

 

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