Today felt different

You’ve all heard of the saying “seek and you shall find,” right? I thought of this a lot today in relation to me wanting to know everything about my genes and the genetic mutations that might have caused my breast cancer (bc). I am now officially obsessed.

As I wrote in an earlier post, I received confirmation of an ATM bc mutation this fall, and I’m now looking into my genetic risks for many more cancers. Up to this point, I’ve wanted to learn all I can about anything that would help my family and me get some answers about our cancer prospects. Each time I’ve seen my genetics counselor I’ve felt confident and excited that we would find “something.”

But today felt different. Today, I’m not sure what I really want to know.

Today I went back for more genetic testing. Unlike last time, Doctors are now going to be looking at specific cancer genes instead of just doing the gene “sequencing” which is more general. There is less of a chance they will miss anything with these new tests. I opted to learn about all genes that are linked to all types of cancers, although I was given the option to learn only about the genes related to breast cancer. I was alone when I made the decision, and in a way, I wish I wasn’t.

Soon, I might (or might not) learn new information that I may not want to learn — but I feel I have no choice in the matter because I somehow feel responsible for helping my family. I am the only one with the opportunity to “seek and find.”

While I was listening to my genetic counselor explain the new test to me, I kept telling myself:

Rebecca, you wanted this all along. Think of your family. Think of your family! …

(I took several deep breaths while staring at the paperwork that was presented to me — reading about all 25 genetic mutations that could reveal my chances of developing ovarian, colon, melanoma, you name it. I took a while before I made up my mind.)

“I choose to know about all genetic mutations!” I told my counselor. “I am a big girl and can handle this juuust fine.”

I would now be facing a new reality that I was not sure I wanted. What if I’m a carrier of a gene that’s unrelated to the cancer I was already diagnosed with? How do I deal with that? What will the doctors advise?

And let me tell you, some genes, if found, come with crazy recommendations. For example, there is this stomach cancer gene that, if I am a carrier, the recommendation would be to remove my stomach. How am I supposed to make such a decision? Not my stomach. I love to eat!

After I signed the form saying that I wanted to hear it all, I immediately asked myself, what did I just do?

I contacted my honey after I was done with the appt. and told him all about it, specifically about the stomach gene – as you can see, that one gene really caught my attention. He bears up as well as he can on this rollercoaster ride, but he still doesn’t like to hear upsetting things. He doesn’t want me hurt ever again. So, he wasn’t very thrilled about me wanting to know about all cancer risks, and potentially having more things to worry about.

Then something else hit me.

I think one of the main reasons I want to know these things is because I need reasons to make drastic decisions about my life. Right now I am basing a lot of my life decisions on “what if’s” because there is no concrete answer about my future when it comes to my cancer. Maybe if I get “the clear” with these gene tests it will encourage me to finally make a decision about building my family. At the same time, if they find a serious mutation for me, maybe this would be all I’ll need to know to convince myself that such choices are limited. Either way, knowing would be helpful to me.

Yes, today felt different, but I realize I still have reasons to want to learn more about my genes. And although I don’t feel excited about getting my results in 5 weeks, I feel I am doing the right thing.

Are the 5 weeks up, yet?

About thesmallc

I'm Rebeca. I was diagnosed with breast cancer at the age of 32. But there's more to my story: I am an animal lover. I love to cook. I have a wonderful fiancé who doesn't mind walking my rocky path with me. We currently live in New York. ---------------------------------------- “Those who have a 'why' to live, can bear with almost any 'how'.” ― Viktor E. Frankl
This entry was posted in Awareness, Follow-ups, Genetics, Paranoia and tagged , , , , . Bookmark the permalink.

4 Responses to Today felt different

  1. scottx5 says:

    Rebecca, knowing, (even bad things) is always better. That sounds like some kind of advice-in-a-fortune cookie saying but really it’s about being in control and making decisions based on reality. You can fight with reality. And you can apply your mind to it.
    The males in my family have bad hearts and that’s good for my grandsons to know. By luck and new surgical techniques I’ve been kept alive longer than them only to find out we are also prone to cancer.
    I suspect it’s harder on women to “know” these kinds of dark things because they “pass them on” to the next generation (or carry the guilt gene for those thoughts anyway). But it still comes down to life, not death.
    Scott

    • thesmallc says:

      Thank you for your wise and kind words. I agree with you that knowing is better (not everyone agrees). Life just becomes a little more overwhelming after knowing, but just for a little while. Then we accept and continue to live, just like we were trained to do.

      You’re right about women feeling differently about it; at least I do. I harvested my eggs prior to chemo and have already met with the Endocrinologist about making sure those “embryos” don’t carry a mutation – the beauty of science. Now let’s hope I can afford to do the procedure.

      I am very curious to know my results and will def. share once I find out what they are.

      I am sorry you’ve experienced some of these “dark things” life offers.

      Thank you for stopping by.
      Rebecca

      • scottx5 says:

        Rebecca, good plan to save your potential as a Mother out of harm’s way. My Daughters are in their mid-30s. The older, Anna, has two boys and the younger, Lindsay has been a traveler and is now settling down. They are both strong women in different ways and drive me crazy with their advice. When they were 13 we considered volunteering them for the first Mars mission–as long as it was one way but we’ve gotten over that:-)

  2. Pingback: Genetic results are in! | The small c

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