Grey’s Anatomy Season 5, episode 17 “I Will Follow You Into the Dark”

Grey’s Anatomy  Season 5, episode 17 “I Will Follow You Into the Dark”

This episode makes things a little more real in regards to the CDH1 mutation as that is what this episode is about among other things.  When the three older children are talking about whom in their family had the gastric cancer, they talk about their mom, grandpa, and Uncle Buck having it.  That was like a HUGE punch in the gut and I literally got chills.  I felt like that was my life right there (minus Uncle Buck).  A couple things to note that are incorrect in the show if you plan to watch it:

1.        During surgery for one of the sisters, they “find” something.  This cancer does NOT form a mass, so they wouldn’t “find” something in those regards.

2.       Anal leakage/seepage is NOT a side effect of having your stomach removed.

A big thank you to my hubby and my Aunt Vera & Uncle Dalen for taking the time to watch this episode WITH me! J

This picture is from the No Stomach for Cancer facebook page and it couldn't be any more true!!!

"THESE FINDINGS SUGGEST THAT PROPHYLACTIC TOTAL GASTRECTOMY, RATHER THAN ENDOSCOPIC SURVEILLANCE, IS THE BEST PREVENTATIVE MEASURE"

"Several samples obtained at the time of prophylactic gastrectomy in asymptomatic individuals with a CDH1 mutation revealed occult disease on microscopic analysis even though each individual had normal screening tests prior to surgery.  These findings suggest that prophylactic total gastrectomy, rather than endoscopic surveillance, is the best preventative measure for individuals who have a CDH1 mutation."

That is word for word what my report stated from my genetic counselor after finding out my CHD1 gene is mutated.  What does that mean in simple terms??  These CDH1 mutation carriers who had ZERO symptoms, did tests, endoscopies, etc. and their results came back that there was NO cancer of any sort.  These people, because of their mutated gene and the 83% chance of still getting the hereditary diffuse gastric cancer, still decided to have 100% of their stomach removed.  Once the stomach was removed and biopsied, it was found that there were cancer cells.  I have read a TON of blogs and to be honest, I have only read one....ONE....where they tested fine before, had their stomach removed, and it came back with NO cancer cells.  THAT is crazy to me and solidifies for me why I WANT/NEED to get this done!!!

SURGERY- HOW IT GOES DOWN....

I have not met with the surgeon, yet, so I’m sure after that I’ll have a more detailed explanation as to how this surgery goes, but I do have SOME information about it that I received from my GI doctor.

The plan is to do this surgery laparoscopically. This means, hopefully, there will not be a huge 7+ inch incision, but rather 5 small incisions and through those, they remove the stomach. (This is where I have questions myself…they pull the whole thing out of one of those incisions?? Or maybe they cut it up while inside and pull pieces out those incisions?? I don’t know, but I will surely find out!) If something goes not as planned or certain organs are in the way, then they end up doing the 7+ inch incision to remove the stomach. Laparoscopic would be ideal as it’s easier on your body during the healing process, so we will cross our fingers and toes it stays laparoscopic.

 

The operation itself is called “Roux-en-Y reconstruction” and what they do is attach the esophagus to your small intestine. Overtime, the place where your stomach was creates its own pouch. It will never replace your stomach in that it won’t be able to break down your foods or get you the nutrients you need the same way, but it creates a similar pouch as the stomach. From what I was told, the surgery itself is actually MUCH easier than gastric bypass. Recovery on the other hand, not as easy, but still manageable. Hospital time after surgery is anywhere from 3-7 days as long as all is going well. Like I said, hopefully I’ll gather much more information in about eight months when I meet with the surgeon! Attached are pictures showing before and after surgery.

WHY BOTHER WITH THIS PROCESS & WORRY WHEN YOU COULD EASILY GET "HIT BY THAT BUS?"

I get that this whole process is NOT for everyone and that's ok.  To be honest, it might not even be for me if I didn't see my mom go through it.  Pure hell is an understatement and she was tough as nails and barely ever griped about the ordeal (at least to my sister and I she didn't)!

With that said, there was a question as to why I'm bothering dealing with all of this?  Why not just let life take its course, not worry, and deal with it when and if it happens.  Really, you could suffer or die from many different things or even get "hit by that bus." 

WELL, I guess my answer is.....I don't have an 83% chance of "getting hit by that bus" and if I did, I'd never cross the street.  ;)  Also, I don't want to WAIT "until it happens, if it happens."  By then, the likelihood of me surviving isn't very good and I would like to be here for daughter & husband as long as possible.  Stomach cancer is the THIRD leading cancer for deaths.  At 83% of a chance, that's too risky for me when I know you can have this surgery done and have a 0% chance of EVER getting it.  AND...you can live just fine after! :)

IT'S NOT A MATTER OF IF YOU HAVE YOUR STOMACH REMOVED, BUT A MATTER OF WHEN...

"You have an 83% chance of heredity diffuse gastric cancer. In my eyes, it's not a matter of IF you have your stomach removed, it's a matter of WHEN. This is not an URGENT matter, but I would definitely put it in your plans in the next few years." That's basically word for word what my gastro doctor at Mayo Clinic said. After a TON of research and reading blogs, I 100% agree with this. I, actually, pretty much had my mind made up before I walked into their office. I still wanted to have an open mind and was secretly hoping they would say something like, "Hey, we have this cool new thing we just found that gives you NO chance of HDGC." The likelihood of that wasn't very likely, but I was very open to everything they suggested. I did ask what would be suggested if I DIDN'T have my stomach removed. I could either do nothing, but that'd be silly because that's the reason I wanted to find out about this gene to begin with....to be preventative... OR do scope every six months in HOPES they find something before it's too late. I asked if there was anything I could do, eat, try, etc. to prevent this cancer from coming about instead. The answer was, "No, it's in your genes, unfortunately. I would love to say if you take this magic vitamin or work out and eat healthy that it would prevent it, but I can't. I'm not saying DON'T eat healthy and DON'T work out, but they won't necessarily help you to NOT get this cancer." My thought is that you CAN LIVE without a stomach, but if I wait in hopes they would catch something IF it ever came about, my chance of survival IF they did find something is less than 20% over 5 years. Yes, there will be a TON of changes, but I will NEVER have to deal with this awful cancer that I watched kill my mom. It was terrible and I don't wish that on ANYONE! A lot of things I read came from the "No Stomach for Cancer" non-profit group out of Wisconsin. AMAZING info with a TON of blogs of people who ARE living without their stomach and are going through the same journey as I. http://www.nostomachforcancer.org/ is their website if you care to visit it and this is where I'll be sharing my blog, also. So, honestly...if I could get this done ASAP I would only because I feel like you heal faster while younger and I really just want to get on with life and figure out my "new normal." Well, that's not realistic. So, plans are to do a complete prophylactic gastrostomy next year, August 2016 (when I will qualify for disability insurance). I will meet with the surgeon in about 6-8 months and get even more questions answered. So, the count down begins....

TRIAL #1

TRIAL #1- Insurance. That should be enough said right there!

Well, for starters, I guess you could say I didn't 100% have my poop in a group.  Didn't have life insurance lined up as we were trying to pay a few other things and kind of put that to the way side. Well, NOW I will not be approved for life insurance with this darn CDH1 gene and all the risks associated with it. (Still going to check out and try for some plans that have no health questions asked with low pay amounts since some is better than none....and maybe I could just do a few plan instead, then?) Thought going into all of this, I better get my game plan figured out, so started looking into hospitalization plans, disability plans, etc. Well, will not/do not qualify for the hospitalization plans...never will....not even if I wait a waiting period.  (I shouldn't say NEVER...I do qualify for the two lowest hospitalization plans, but preferred the 4th plan which is the one I'll never qualify for.)  Disability I am good to go on, thank goodness.........as long as I have a letter from my doctor deeming whatever I do "medically necessary" AND I have to wait 12 months. I think I can manage to wait 12 months....plus this gives me more time to think, figure things out, and save up.  My doctor said it would not be a problem to write up a letter deeming this medically necessary and asked if I wanted one written up that day.  I decided to hold off until closer to procedure day.  Oh the joys of insurance....I think that's an overall feeling whether dealing with the CDH1 mutation or not!!

TRIAL #2

I expect a TON of trials along this journey...

 Here is TRIAL #2 (where's trial #1 you ask??  well, I'll touch on that in a different post). I had decided in the last month or two that it would be nice to have some extra cash and started donating plasma, again.  Well, walked in the other day ready to donate, as usual, but nope....you have to wait 4 months after having an endoscopy before you can donate. Well, by the time 4 months is up, I'll be just about ready for my second scope. 

Oh, but wait...there's more!

They wanted to know why I had the scope and it lead into the whole story of all of this. Although they found it VERY interesting, that didn't help my situation. They said they would take my info to their higher ups, but expect to never be able to donate again going forward. Booooo! Not a huge deal and just a step along the way, but still disappointed me.

WHY DON'T YOU GET A SECOND OPINION?

I want to be very open and honest about EVERYTHING here for everyone following along.  I appreciate all of your support, questions, comments and will answer things as we go, so keep them coming!!!

 This one I heard on the side and not directly from the person it came from....and that's ok, too!
"Why wouldn't you get a second opinion? This is a lot of information to take in with a lot of decisions to make?"
I emailed my genetic counselor on this. Although, I FULLY believe what he is telling me and did not even second guess a second opinion, I still emailed him on this. He as 2 answers:
1. Well, your genes are your genes. You can't really change them. It's not like I'm telling you that you have a certain condition or cancer. I'm telling you how your genes read. 
 2. Usually patients come to Mayo for a second opinion. Not sure if there is somewhere else you might want to try for a second opinion or if you would want to do another blood draw and have it reanalyzed?  He fully believes in their lab with all the strict guidelines and regulations they have . He said the only thing would have been if my blood sample got switched, but that would be quite odd with how rare this is.  It would be one thing if it came back with a mutated CDH1 gene, but I never had any family history of HDGC or lobular breast cancer. Then, again....that's the reason I am being seen there....because OF my family history! ;)

WHERE DID YOU GET YOUR MUTATED CDH1 GENE FROM??

The ONLY way you can carry this CDH1 mutation is if it's carried down by a parent. My mom was not tested for this, so I had NO idea what would come of this. Could have come back positive, negative (still would have a chance of stomach cancer since it's in my family, but wouldn't have been as preventative about it), or inconclusive (something weird going on with the gene, but not sure what). So, although having it come back positive (thanks mom) isn't GREAT, I look at it as better than the other two options.

Now, this means my mother obviously had the mutated gene along with either my grandmother or grandfather. This, also, means my sister, my maternal aunt, my maternal uncles, and my daughter, Paige, all have a 50% chance of having the mutated gene.  I can't speak for everyone else, but I know we will have Paige tested in 10-15 years IF she wants to know. It's worth it to wait that long with science changing and letting it be her own decision.  Once you test negative, that gene will never be found down the line (ie: it doesn't skip generations).  So, that's how that works.  Finding out isn't for everyone and that's ok.  Seeing all my mom went through first hand and how awful it was helped me decide I wanted to know so I can be as preventative as possible and hopefully NEVER have to deal with that OR have Paige watch me go through that!

SIDE NOTE

SIDE NOTE:  If you are reading this and paying attention to the date/time, you may be thinking what the heck?  Why is she posting all of this stuff at once??  WELL....I do have good reason for it.  I had, originally, started a facebook group to get awareness out there as most of my family and friends use facebook.  I made it a "secret" group to tweak a few things and then get going on it.  WELL, once you make it a "secret" group and add people, you can no longer make it "public," anymore.  So, I decided that I didn't really want to create another group AND it would be good for anyone NOT on facebook to be able to find info, too....so, here we are.  I'm pretty much copying and pasting what I had on facebook and then going forward, I will write in both!

FIRST ENDOSCOPY (hopefully not too many more after this one!)

As I sat at Mayo Clinic in Rochester, MN waiting for my first endoscopy (scope/biopsy of my stomach), I was STARVING....had to fast for it, so was trying to stay strong until after (scheduled at 12:30, but my doctor said they usually run late).  Don't let the location of "Mayo" scare you!! Everything I'm currently doing is to be PREVENTATIVE!!! I would like to be around for awhile....at least through my daughters proms, graduations, wedding, babies, etc. and a lot of these my mom did not get to experience.  So, there I sat with a growling tummy, but that's ok...not always going to have that feeling, so I'll take it while I can, I guess!

The endoscopy itself was not the most comfortable thing I've ever done especially since I was not fully put to sleep for it.  My throat, even now after 3 days, is still a little sore.  (Don't worry...I made sure to treat myself to nice big ice cream on the way home to soothe my throat since I was such a good girl for the scope.)  I got my test results back yesterday and NO CANCER....yay!  I didn't expect there to be since I'm not having any symptoms, but anything is possible.  On the flip side, they did find that I have gastritis and H. pylori.

"Gastritis is an inflammation, irritation, or erosion of the lining of the stomach." (I copy pasted that sentence from WebMD.)  Of the list of things that cause that, the only one that holds true for me is stress. Gastritis could, also, be... the cause of the H. pylori.

"H. pylori is a bacteria that lives in the mucous lining of the stomach; without treatment, the infection can lead to ulcers, and in some people, stomach cancer." (also, copy-pasted from WebMD) Sounds like you can get H. pylori from just about anywhere.

 I will start a 2 week round of 2 antibiotics and an acid reducer. My doctor is thinking that with those 3 things, it should take care of the gastritis and the H-pylori!

SO, WHAT DOES HAVING THIS CDH1 MUTATION MEAN???

Having my CDH1 gene mutated means I have an 83% chance of Hereditary Diffuse Gastric Cancer (the same cancer that killed my mom and most likely my grandpa (even though his death certificate lists a different kind of stomach cancer, my genetic counselor thinks because there wasn't a lot of information about this cancer when he passed, it very well could have been listed incorrectly)). The average onset age of this cancer is 38 (my mom was 44 years old when she passed) and by the time you have any symptoms evolve, you are usually in the 3rd or 4th stage of cancer (NOT GOOD!).  Did I mention....LESS THAN 1% OF AMERICANS get this Hereditary Diffuse Gastric Cancer (HDGC is what we will call it going forward).  So, I really want to be on top of my game here since it is so rare and aggressive.  With this I have 3 options:
1. Do nothing (not my cup of tea)
2. Do scopes/biopsies every 6 months in hopes they catch it sooner than later (this cancer is not like others in that it doesn't form a mass, but rather engulfs the whole stomach and doesn't even show up on any xrays or anything like that, so scopes are the only way to catch it IF they biopsy the correct part of the stomach and how are they to know what part of the stomach is the "right part" which is how they missed my moms cancer during her first scope).
3. Complete Prophylactic Gastrectomy (complete removal of the whole stomach done on a preventative level). 

 Also, this means a 60% chance of Lobular Breast Cancer. They say starting at 35, I need to start doing mammograms and MRI's every 6 months. I did, however, start with my first mammo today at 30 years old since they "found something suspicious."  Everything came back just fine, so I will see them back in 6 months for an MRI.  Also, I will continue to focus on my stomach.  My primary doctor said they are way more advanced in breast cancer research then stomach cancer, so she agrees focusing on the stomach is ideal.
Uffda (yes, I really said uffda....I am from North Dakota after all ) that was a lot of info at one time....I'll let that process for a bit and then continue on.

POSITIVE CHD1 MUTATION

So, how did all this crazy stuff come about???

Well, I saw my primary doctor for my annual visit and she said, "Ok, you are 30 now and I really think we need to be preventative however we can on the stomach cancer stance so I'm going to refer you to a gastro doctor here in Bismarck." Perfect! Anyway to be preventative I am 100% game for!

So, I met with a Gastro doctor in Bismarck who, let's be honest here...I mean that's what I'm all about, I did not care for in the slightest! ...Anyway, she asked why I was there and I explained my mom died at 44 years old of stomach cancer and so did my grandpa. I was there to be preventative and not walk in my mom's shoes. She asked if I had certain symptoms and the only thing was heart burn, which I can control by not drinking pop and eating chocolate. She did a physical stomach exam and said, "Ok, plan is to let us know if you have any other symptoms and if not, we will see you back in 10 years." TEN YEARS???? So, when I'm 40 and about the time when my mom maybe started getting a few symptoms?? Um...no. That was NOT going to fly with me. She got to the door to walk out, looked back at me, and I'm guessing she saw my jaw hit the floor. She shut the door, came back in, sat down and asked why I didn't seem comfortable with that. I told her exactly why....I want to be here for many more years to come and this visit was pointless if that's all she was going to tell me. She, THEN, asked a little more about my mom's cancer. At that time, I didn't know a lot....the cancer kind of engulfed her whole stomach, it's very rare, hard to detect, generally Asians get this, and may have come from too much Advil. That's all I had. She did some searching on her computer and said, "Ok wow! I'm glad you stopped me. To be honest, we have never dealt with this cancer here. Less than 1% of people get it. Our best bet is to send you down to Mayo Clinic as they know most about it and can let you know everything there on how to prevent it."

So, met with an AMAZING genetic counselor at Mayo Clinic who went over ALL the details of the CDH1 mutation. We decided to do the test...there was only a 25% chance it would come back positive since we had nobody else in my families test results to go off of. Did the blood draw (simple and expensive process) on April 27th. Got the pre-authorization back from insurance company showing it was approved the middle of May, then 4-6 weeks later got the call that I tested positive for a CDH1 mutation. I wasn't really sure how to feel.  Being a pretty positive person, I took this as maybe not the BEST thing, but the alternatives could have been worse.  The results could have come back negative & I still could have ended up with stomach cancer and never did anything to be preventative.  I could have tested inconclusive and that would mean something weird is going on with my gene, but they're not sure what.  (To be honest, inconclusive would have driven me CRAZY!)  So, testing positive isn't SO awful...not like they said I HAVE cancer and guess what, I have options to be preventative!!!

From there, was referred to the GI department in Mayo to go over my 3 options and had that done on Monday, August 10th along with my first endoscopy to follow Tuesday, August 11th.  Will talk about my 3 options and results in a separate post as this one is getting a hair long! :)

WELCOME!

Hi all!  Thank you for following me on my journey of finding out I'm partially related to the Teenage Mutant Ninja Turtles.  Ok, it maybe doesn't go quite like that, but I do have this crazy CDH1 gene that just happens to be mutated. Sounds kind of cool, but in turn, it's going to have me on this crazy journey in life. I am going to blog my experiences here for friends and family to follow along. Also, I have found it BEYOND helpful to read other blogs, so I'm hoping to do the same for others who are on this crazy journey, too! (Oh and my counselor says it's a good thing to journal.) Feel free to leave comments, questions, etc. This post doesn't give you a lot of detail about this gig, but I promise to let you all know the details as we go on. Thanks for following and allowing me to share my "Gut Feelings: A CDH1 Journey" with you!!!