What Makes Me So Special?! (as published on CDH1gene.com)
Updated: Aug 1, 2019
I have been busy writing, but mostly for other blogs. Below is a post I wrote for a fellow CDH1er's website/blog. I have another post coming out in August on the Firefly Sisterhood blog, I will let you know when that is posted as well. This post has been weighing heavy on my mind for many months, and I didn't get up the courage to publish it until now (thank you Jonathan for your encouragement). I hope this resonates with at least a few others out there. Thanks as always, for listening.
Click here to see my guest blog post on CDH1gene.com. Or, read an edited version below.
A CDH1 mutation. That’s what makes me special. Unlike most other 33-year-olds, I have been diagnosed with two different types of cancer in less than two years. These cancers don’t recognize economic status, lifestyle, or other health indicators. Rather, they have a strong likelihood of attacking anyone who carries a CDH1 mutation.
Having a CDH1 mutation increases my lifetime breast cancer risk from 12% (approximately 1 out of 8 women in the general population will have breast cancer in their lifetime) to 39%-56%. That’s about 3 to 4.5 times the risk of breast cancer in my lifetime just from genetics alone. And, that does not include the increased risk from my personal family history of breast cancer. Research suggests that having even 1 first-degree relative with a history of the disease is significant to increase my lifetime risk from the already astronomical 39%-56%. My mom had breast cancer too. So, why I am I telling you all this? Well, I am here to say that although I am human and have made some mistakes in regards to my health over the course of my life, cancer is not my fault!
When I was first diagnosed with breast cancer, I assumed it was obvious that I did not purposefully cause my own cancer diagnosis. Unfortunately, as time has gone on, and through multiple personal experiences, I have realized that not everyone agrees with my statement that cancer is not my fault. I have also come to realize that not everyone agrees with the steps I have taken, and am continuing to take, to ensure cancer doesn’t take my life too soon.
Let me give you some examples. Here’s the first. Someone finds out I have cancer. Instead of saying something caring, they start questioning me about my diet and asking if I have tried changing the foods I eat. This cancer, however, is due to a genetic mutation. It is not caused by external factors. At least, I’m not aware of anyone making evidence-based connections between the foods I eat and the cancer I have.
Here’s the next example. I casually mention that I will be having radiation therapy as part of my treatment plan. The person I tell says to me that I shouldn’t do it because it will cause cancer in the future. Essentially, what they are saying is that I should not undergo the recommended treatment because a chance exists that it might cause me more cancer. Thanks for the reassurance.
Here’s a third example. Occasionally, I let my sarcasm and dry sense of humor prevail regarding my potential to still die from cancer despite all my efforts to evade it. In response, I am told to be more positive because there is power behind positivity. This irks me because I am generally a very positive person. That’s one contributing factor to my current success of living with cancer and a CDH1 mutation. Despite this, I am human and sometimes I’m not positive. I think I have that right. Also, sometimes I make dark jokes and I shouldn’t be made to feel bad about that. It is one of my many coping mechanisms. Just laugh with me, ok?
Here’s a final example. Someone finds out that I will be having a total gastrectomy due to having early stage gastric cancer. In response, they tell me I am not going to be able to live a quality life without a stomach, and that I should reconsider. Thanks, Captain Obvious. As if I did not know that by now. Moreover, the person must not realize the high likelihood of someone with CDH1 developing stomach cancer (greater than 50%, with some people predicting as high as 80%). Plus, I do have stomach cancer, and if it progresses, my 5-year survival rate is very low. So, is the person suggesting I take that chance because total gastrectomy may cause me to have a lower quality of life (which isn’t even necessarily true)? Whereas the alternative is almost certainly an early death?
Well, I am here to say, I know.
I have had over a year to ponder these very questions and review all my options. I have worked closely with my teams of doctors, have sought second and third opinions in some instances, and weighed my decisions rationally. I have looked at all the evidence. I remain positive about my prognosis 99% of the time. I am not making these decisions lightly.
I am aware my life will be forever changed from my treatments, surgeries, and future surgeries. Heck, it already has. A lot of cancer treatments can cause cancer in the future, but when faced with the option of potentially curing my aggressive cancer now, I will take my chances with future cancers.
If you think about it, a lot of medicines, products, and toxins we use on a daily basis without even a second thought can cause cancer, we just don’t hear from a team of doctors all the potential side effects of those products. Cancer treatments conveniently come with pamphlets outlining their potential negative side effects. I get it, I have read all of these pamphlets.
Ultimately, I want to live to see my 40’s and beyond. I also trust my doctors, and their recommendations. So, please don’t tell me how hard it is going to be. Please don’t tell me how I will cause cancer in the future because of my treatments. In my heart, I need to know I did everything I could. And, I am at peace with the potential consequences. As my oncologist puts it, "If, heaven forbid, your cancer were to come back one day, would you feel like you did everything, or would you blame yourself for anything? Take that into consideration when making treatment decisions."
Also, please don’t demoralize the decisions that I have fretted over day and night for the past year and a half. And, lastly, please don’t invalidate my feelings by telling me to be positive. We all have the right to express ourselves in whatever ways we choose.
I don’t feel like I need to justify myself, but for the sake of putting it all out there and breaking down cancer stigmas, I will let you in on some insider secrets. Yes, diet, exercise, body products, environmental toxins, economic wealth, access to healthcare all impact our health and our cancer risks. I eat as organically as I can. I was physically fit, practiced yoga, practiced calmness, and did not let anger or anxiety rule my days. I felt extreme love and support from friends and family. I had access to preventative healthcare, health insurance coverage, transportation, and I was well versed in the language of health.
I am not a heavy alcohol drinker. I am not a smoker. I use natural cleaning and body products whenever I can. I pay attention to ingredient labels on almost everything I bring into the house. I have worked diligently to eliminate risks from my life and make sure I am well educated on the matter. Environmental exposures were, and are, the only risk factors I have some control over, and I am grateful to have the means to reduce those risks.
I am very healthy overall. Except, I have cancer.
Despite all of these positive and predictive health indicators, I was still diagnosed with cancer at a very young age. Yes, I am not perfect (no one is), but even if everything was perfect, I still would have been diagnosed with cancer.
Because I have already faced aggressive cancer once, I am not willing to do it again, if I can help it. With breast cancer, there is a lot of research going on and there are many treatment options available, which I am beyond grateful for. There is still a lot of work to be done, but at least there are options and researchers are working on making those options better every day.
This is not the case with diffuse gastric cancer. There are no pink ribbons and nationwide campaigns to raise money or awareness for CDH1-related diffuse gastric cancer or CDH1 mutation carriers. Since finding out about my genetic mutation predisposing me to cancer despite my healthy lifestyle choices, I am profoundly dedicated to taking this information and using it to prevent future health problems in whatever way necessary.
I have early stage diffuse gastric cancer, which is rare, in and of itself, because it is almost never found until late stages, even for CDH1 mutation carriers (thank you researchers for working hard to understand and find this sneaky cancer). I consider myself lucky for finding it, and having the opportunity to do something about it.
I don’t want to be another gastric cancer statistic. I have worked hard to make sure I live a long life despite cancer, and I can’t justify putting that in jeopardy no matter how hard the alternative is.
So, my decision is that my stomach has to go. My decision is in line with current recommendations for CDH1 mutation carriers, but it is still a hard personal decision. Having an endoscopy result positive for gastric cancer made the decision slightly easier, but still, imagine being told you need to have your stomach removed! There is no going back from that, and a stomach has much more functionality than body parts I have already given up.
Psychologically, I will not be able to find peace until it is gone. Knowing there is cancer in there, and knowing how hard it is to go through what I have already been through, I just can’t leave it there to potentially kill me.
My intended purpose of this post is not to alienate anyone, but to let you into my head space for a moment. Also, to be real and show others that it is ok to make the right decisions for you, despite what others might say or think.
My affirmations as of late include: I am strong. I am smart (recently received proof in the mail – my official masters of public health diploma arrived). I am making the right decisions for me and my family. I am doing the best I can. I am loved and express love towards others. I don’t always have to be positive, and I can do this.
Thank you for your continued support, because unfortunately, this next step in my CDH1 mutation cancer journey may be just as hard, or harder, than the last.
Take Great Care,