RANT - sorrynotsorry

A few weeks ago, I reached out to my aunts and uncles (on my dads side of the family) to let them know this could affect them and their families.  Out of the 5 of them, not one has responded. I would just hate for somebody else to get this awful stomach cancer when it could have been prevented had they chose to.  And I was hoping they would want to make informed decisions regarding this potential risk.  Since they didn’t respond I feel the obligation to reach out to all my cousins, which I did today. I got a couple responses right away, which I am feeling good about.  One cousin said she is going to get tested as soon as possible while her brother is showing interest in getting tested as well.  This isn’t super impressive as I have dozens of cousins on that side of the family. But maybe the 2 interested cousins with get the ball rolling and the others will realize they might want to know more about this.  Maybe they want to know that if their parents (my aunts and uncles) have CDH1 they have a 50% chance of having it.  And if they have CDH1 they have a very high risk of getting HDGC (hereditary diffuse gastric cancer).  And if they do get HDGC it will not be detectable until late stages and is very difficult to treat.  And if they have CDH1 each of their kids have a 50% chance of having it.  I don’t know, just something I would definitely want to know about if I were in their shoes.  

Again, I don’t want a pity party, I just feel responsible for informing them, so they can then make the choice for themselves.  It’s difficult to make choices about things you know absolutely nothing about.

Okay, rant over. I apologize for rambling there. Just get kind of worked up when thinking about the family members who I don’t think understand the severity of this genetic mutation.  Thanks for listening and have a good night 😉

EGD and COLONOSCOPY

A couple weeks ago, we met with our second gastroenterologist. He is kind of quirky but seems very knowledgeable and confident in his practices.  He said he will do excavative biopsies and take about 30 biopsies.  He too said I need to have the PTG as soon as I am comfortable doing it. He does not feel I need to rushed into making her decision either.  Obviously he knows it is my choice to have the PTG or not, but since he knows I’m on board for it, he agrees it needs to be done.  He also convinced me to do a colonoscopy since they don’t know for sure about the link with colorectal cancer and this gene.  And it will be a good baseline.

So today, I had my EGD and colonoscopy.  Everything went well. They found a polyp in my colon which they removed and sent to pathology.  I’m a little anxious about that one, but only time will tell.  Dr stated he did 15 biopsies, which I’m a bit upset about. Because that is half of what he said he was going to do. He did say everything looked really good in the stomach and maybe that’s why he decided to do less biopsies.  But this tells me he doesn’t fully understand this gene mutation.