Cody Updates by Mom

Hello all

I actually thought to title this “Answers, a boat load more questions and stepping off of the blank page” however that seemed a bit long for a title.  In one of my past entries I had mentioned that I was standing on the blank page waiting for the next chapter to start.  This next phase isn’t just a new chapter, it is a new book.  Let’s hope this isn’t a trilogy.

I now know what caused my somewhat rare “lobular breast cancer”.  I also know that there was nothing I could have possibly done to prevent this.  I also know that I still have a long journey ahead of me.

For my siblings – I sent letters out to all of you.  You should have them by now but if not, please look for it as it will cover additional information.

October 21st my next book started on my journey.  I know that I have seen many of you within that time and I have not said anything.  I have been in the “fake it till you make it” mode to get through these first few weeks.  Quite honestly it is getting harder and harder to share bad news with the people in my life.  On the 21st I received my results from my genetic testing.  You know how you go into something pretty major and you have some general hopes, maybe even secret hopes that will help to make a future decision.  I was so very wrong in not only my hoping but my thinking of what it could be.  I have learned that I have a genetic mutation that has been passed down through my family.  This mutation is called CDH1.

Before I go to far I want to explain a little about genetics that I have learned and how they mutate.  Each gene that we have is a pair.  Two gene’s of the same type make up our gene’s in our DNA.  We inherit these genes from our parents.  One from our father and one from our mother.  Since each person has two of the same gene there is always a 50/50 chance of which gene you pass down to your kids.  Each individual gene is made up of letters AG, AT etc.  These letters form groups of three to make up the healthy gene.  My CDH1 gene is missing one of its letter combos.  This has caused my groups of three letter combos to realign in an non-normal way.  Said differently, my gene is missing some pieces of its puzzle and had finished the puzzle but it is no longer square.  This issue causes a protein deficiency that most likely will cause cancer.

What does this mean?  Well, I don’t have all of the answers but I have some.  First of all, they have been able to tell me that this gene mutation caused the lobular breast cancer that I have just spent the last months beating.  With this mutation I had a 39-52% chance of getting this breast cancer.  Only 15% of the diagnosed breast cancers is lobular.  The biggest part of all of this is the fact that this gene mutation cause a very specific type of stomach cancer.  Having this mutation gives me the diagnosis of “hereditary diffuse gastric cancer syndrome”.  So, what does this mean.  Well, this means that I have a 67-83% chance of having stomach cancer.  Not feeling good about these numbers. (I just spent months doing chemo and radiation to get my recurrence numbers for breast cancer down to 5%)  Most people that have this mutation and cancer die at a very young age (38-55).  This cancer is very difficult to detect because it never forms a tumor.  It grows in the lining of the stomach and by the time you have symptoms you are likely at stage 4.

With the help of my big sister we have been able to get information about my relatives and have a pretty good idea of where this mutation has been passed down.  The only anomaly is that my mother has had no signs of stomach cancer.  She is still here and doing well at age 80.  It is only an 80% chance to get it so maybe she was lucky and is in the 20% group.  Her father died at 70 and they found stomach cancer during the autopsy.  His dad (my great grandpa) died at 45 of liver cancer.  My oncologist said that liver cancer is very rare and is typically caused by a different cancer that has moved to the liver.  Since we cannot go back in time there is no way for us to know if he had stomach cancer.  His mom (my great-great grandmother) died at 52 of stomach cancer.  This seems to be the line where this is coming from.  We will not know unless my mother is tested and is positive for the gene mutation.  If it is not my mom then we have a lot more work as there is not as much information about my fathers side of the family.

So, what does this mean for me personally.  Well, initially it means that I will be having a bunch more doctor appointments and my doctor team has gotten bigger by adding a gastro intestinal (GI) surgeon and a GI specialist.  At least I get to keep my oncologist.  I like “doogie” and do not want to have to get used to someone new there too.  Last week I met with my oncologist about my upcoming appointments.  He says that my GI specialist is phenomenal and is on the cutting edge of technology.  I meet with my GI surgeon this week and next week I have a endoscopic ultrasound and biopsy.

Let’s start with the test next week.  The ultrasound is a new type of technology that they are using to try to detect this cancer.  If you think of a typical ultrasound for a pregnancy, just take that thought and imagine doing this from the inside of the stomach looking through the lining of the stomach.  They are hoping that they will be able to see issues in the lining and then take the biopsy samples from those areas that look suspicious.  If they do not see anything suspicious they will take random samples of the stomach lining.  This can be troublesome as if they miss the area with the cancer it can give a false negative on the test.  If they find something, they will then make a recommendation of my next steps.  If they do not find anything then I have a very big decision to make.

No matter what happens I have to seriously think about my future.  Both part of the cure if I have cancer and the preventative procedure involve a surgery to remove my stomach.  [Insert break here]  I just want to let that sink in a bit.  I can tell you that this has been a very difficult future to imagine.  I will know more after meeting with the GI surgeon this week but basically they remove the stomach in whole and a portion of the intestine.  They then build a fake stomach (which is much smaller) and that will help my system not have food move to my intestines immediately after eating.  There will not be an stomach acid to break up food so my eating will have to dramatically change.  It would be similar to someone that has had a gastric bypass surgery but without the ability to have the stomach digest.  I would eat very small, high calorie meals.  I would also likely have to have shots to give me nutrients as my system will just not get enough nourishment from my limited diet.  I would lose a significant amount of weight.  Not too sad on that at this point.

If they find something in my test on Thursday they will likely be recommending this surgery with any follow up care.  If it is cancer there is a possibility of chemo again.  If they do not find anything in the tests then I will need to decide my next steps.  I can continue to have biopsy’s regularly and hope that they test the right spot and catch the cancer before it spreads or I can choose to have the stomach removed now and remove the possibility of having the cancer.  Many people that have had family with this gene mutation decide to have the surgery.  Many of those people end up learning that there was cancer in the stomach that was undetected.

So, where does this leave me.  Well, quite honestly, I am feeling wore down and very emotionally and mentally tired.  I don’t know how much more I can handle in one year.  BUT, I will keep going and I will prevail.  There is no other option.  For now, it is the waiting game.  I wait for my appointments and tests and then wait to see what my future holds.  As for my family, my brothers and sisters have a 50/50 chance of also having this gene mutation.  I have sent them all information on my results and they can decide if they want to be tested.  You may wonder, why would you not want to be tested.  Sometimes it causes more questions to know your genetic makeup.  The biggest reason though is that if you are tested and have any mutations, life insurance companies can deny your application for a policy.  If you are going to be tested make sure you have your life insurance already set so there is no issues of that in the future.  As far as Cody, he will need to decide (after he is an adult) if and when he wants to be tested.  If he does want to be tested he will have all of my information to help him in the process.  We will also handle the life insurance thing ahead of time.  Cody and I have talked that we would likely wait until he is in his later 20’s before testing to get him past college and have a good sense of how my decisions have played out.

In the end, I have a million questions that I don’t have answers to.  I have some answers but they are answers that scare me.  I am nervous for the tests and what is happening in my body.  I am also at a loss at what to wish for.  Each wish I can think of gives me either a scary path or a really hard decision to make.  Lastly, I am beyond numb.  I have moments where I am productive and in good spirits, then I have moments of panic and terror.  I do not know what to do or feel.  I pray for wisdom and patience as I travel a new road that I am not so very knowledgeable about.

October was Breast Cancer Awareness month.  I have embraced the pink.  Interestingly enough, November is Stomach Cancer Awareness month.  Time to embrace the periwinkle.  Ok, not quite a good as pink but, hey, I didn’t pick the colors.  Actually, I had to look up what color periwinkle is.

Book 2 has started.  No matter how scared, lost or down I may be at times I still have my internal drive to fight.  I can feel it way down in there waiting to have the answers so we know what to fight.  It is just a new kind of fight and a somewhat new team.  Apparently, God must think I am made of titanium.  I am still here and ready to take on what life throws at me, I just wish life would stop using the pitching machine and give me a little breather.

Caring Bridge Comments

Melanie King|Nov 7, 2014 9:13pm
Thank you everyone for your amazing comments and continued prayers. Your words mean so much in this time of uncertainness. Thank you for cheering me on to continue to build strength so I can beat everything that stands in my way! 🙂