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. 

1st GI consult

 In anticipation of my appointment with a gastroenterologist, I was feeling a bit anxious, as I have no idea what experience she has with this gene.  The idea in my head is that it doesn’t really matter how much she knows about it, she can still perform my EGD and follow the guidelines by doing a ton more biopsies.  She came very highly recommended by a couple people and they are confident if she doesn’t know about this she will advocate and research for me.

Well, Matt and I were very underwhelmed after meeting with her today.  She has never heard of this gene mutation and shows no interest in trying to figure it out with us.  She, like everybody else, was shocked that they are recommending a PTG and suggested getting a second opinion (which as you know from a previous post we have done).  This Dr is close to our house so I figured at least she could do my EGD so we wouldn’t have to travel as far.  But after meeting with her we just did not have a good feeling about it and decided to just make the drive for somebody who has actually had patients with this gene mutation.

I’m going to tell my story, even if you didn’t ask to hear it

I feel this strong need to tell everybody my story. I somehow feel the more people know the more likely I will be to find somebody who can help me.  Just telling my story will help me emotionally and psychologically.  And I think it will help with finding the right healthcare team to care for me.  Most people in my life have been very supportive.  The reaction of shock has been very common for almost everybody I’ve talked to.  The shock is quickly followed by a ton of questions. Such as ‘how will you eat?’, ‘will you need a feeding tube?’, ‘should you get a second opinion?’, ‘do your kids need to be tested?’ And the list goes on and on. 

So, I will eat just like everybody else, through my mouth 😜.  But will have to eat slower, more frequent smaller meals. 

I might need a feeding tube depending on my surgeons preference to help prevent too much weight loss in the beginning.  

I have gotten many opinions as I’ve talked to a couple genetic counselors and several doctors and surgeons and their opinions are unanimous in that I should have a prophylactic total gastrectomy.  

My kids will need to be tested at some point when they are older.  My husband and I will talk to them as they get older to determine at what point we should test them. We both want them to be involved in this decision as much as possible when they are at an age they are able to be. 

I’ve also been trying to read as much as possible in research and guidelines so I know what questions to ask potential surgeons.  From my research I’ve learned I want to know a surgeons anastomosis leakage and stricture rates. And I want to know how long my roux limb will be.  And again, the list goes on and on.  And this is where my obsession starts to come in. I know I’m probably over the top with wanting to every little detail of the surgery, but this is my way of coping and feeling as if I have some sort of control in all of this.  I want to feel 100% comfortable with the surgical team I choose and being well informed is how I accomplish this.  

Life insurance

I have a friend who is a nurse in genetics.  She recently brought me all kinds of literature to read and catch up on. I’m reading as much as possible to soak all this in and be able to make informed decisions when interviewing surgeons.  I am so thankful for her support. In her words “it’s going to be okay.  This sucks.  It sucks really bad actually.  But it’s going to be okay”.  She asked if I have life insurance.  Which I do...but it’s a policy through my job and if something happened where I’m no longer able to work or I switch jobs, this could be an issue.  So now I’m trying to get an independent life insurance policy, which is stressing me out that they will find out about my genetic mutation and deny me, which would just kind of suck.

Today, the life insurance examiner came to the house to do his assessment. I was so nervous.  He definitely did not seem to enjoy his job and just wanted this process to be over with.  So, he never once asked about any genetic testing!  Phew!!  Bullet dodged and now I wait to hear if my application has been accepted.

Life may suck at times, but life is amazing

Matt and I met with the genetic counselor at MD Anderson (Rebecca Luiten) today.  She was amazing.  We spent almost 2 hours with her learning about this gene mutation. Unfortunately she confirmed what little information I already knew.  She assured us that people who have had a PTG (prophylactic total gastrectomy) are doing very well and leading very healthy normal lives.  It usually takes about a year to get back to a new normal, but after that people are doing very well.  The key to this mutation is I have a very high chance of getting HDGC (hereditary diffuse gastric cancer) which means it’s in the lining of the stomach.  Because it is in the lining it is very difficult to screen for this type of cancer and by the time it is found the cancer is usually in very late stages and I wouldn’t have much of a chance to fight it.  Which is why they are recommending a PTG to guarantee I don’t get HDGC.  My risk of getting HDGC would go from over 80% to zero chance.  My mind tends to gets ahead of myself and I’m feeling a bit overwhelmed, anxious, and sad.  At this point in time I think I’ve decided to go ahead with the surgery. I do not want to be in my dad’s situation (finding gastric cancer and having 3 months to live) at any point in the future.  I want the chance to be around for my kiddos for as long as possible and I don’t ever want them to experience what I did when my dad was diagnosed.  So I am feeling so lucky to have the choice to prevent this awful cancer and remove my stomach.   It’s just a matter of timing. The genetic counselor recommends doing it before I turn 36, which is 10 years younger than my dad was when he was diagnosed with gastric cancer.  So, I have 3 years to play with.  I just don't think I can wait that long as I kind of feel like a ticking time bomb at times.  And I honestly don't think any time is better than another.  I just need to take my time finding the right people to care for me.  I'll meet with the gastroenterologist to get my EGD done and over with.  Then I'll slowly start researching surgeons and having consults.  I have the tendency to fixate and obsess with decisions I need to make, but this time I am going to take it day by day and still live my life as normal while plugging away at all the work I have to do. 

It’s amazing how the grieving process works.  I’m actually surprised it only took me a couple short weeks to come to the conclusion that I am so lucky to have this choice and chance to stick around for my kiddos.  This has really made me look differently on life.  To live life to it’s fullest.  To enjoy my kiddos everyday.  To slow down and take in all the little moments.  To stop worrying and stressing about the little things that don’t really matter in the grand scheme of things.  To be nicer to my husband; he isn’t perfect either and I shouldn’t expect him to be. To laugh everyday.  To do the things I really enjoy in life.  To tell the ones close to me that I love them at every chance I get.  To give hugs more often and squeeze a little tighter and longer.  And to be thankful for this amazing life I have.  

Ugh, why me?!

My best friend called me today.  She works closely with many types of surgeons and started asking around and doing her own research and she tells me “we gotta get this shit figured out”.  She asked around some more and did some more research and then says “you got this.  You can totally live without a stomach.  There are lots of people living and thriving without stomachs.  I know that’s not what you want to hear right now, but you have to do this.  And I know a very skilled surgeon who would do it laparoscopically”.  She went on to give me contact info for this surgeon and our conversation ended.  

I was at work again today and just couldn’t believe my life was coming down to making this decision.  It angers me so much, I would just rather not have known about this.  When I think about my kids I just get super sad and know I want to be around as long as possible for them.  It’s hard to imagine them growing up without me, their mommy, around.  I opened up and talked to a couple people at work as my colleagues, supervisors, and managers are super supportive.  I just felt the need to talk about it.  Plus, I feel pretty close to several friends I work with.