Back in November, I was told that I carried a mutated brca 1 gene. I’ve only written twice on the blog about it, here and here.
There are a couple of reasons for not blogging about it, most of them would go back to just one reason/excuse. That being, I don’t really want to acknowledge that I carry the mutated gene. Also, I don’t want to scare any of my blog readers away. It’s not that I want to pretend I’m perfect, because I’m anything but that. It’s been nice to have a place away from my struggles. I do think however, that sometimes our struggles can help others who are struggling and so that is why I decided to post about it today. I would love to be able to talk to someone else going through a similar journey to mine, because I’m not finding it very easy at all.
I had hoped that by getting the genetic testing done, that I’d be able to stop having all the regular testing (blood tests, pap smears, ultrasounds, mammograms) and that if the worst happened and I carried the gene, it would be better to know than not knowing at all. I’m not sure if that is true now. Well, I know it is true, but I still am struggling to come to terms with it all!
You see, I’ve now been to two different specialists, a breast surgeon and a gynaeologist, and both of them said the same thing. They both recommended prophylactic mastectomy and a oophorectomy/or hysterectomy. What does this mean to me, a woman?! It’s scary stuff.
With the mastectomy’s I would get reconstruction straight away, which basically means I would get a boob job for free (thanks Mr. Key!). The only thing is, is that I’m rather attached to these boob’s of mine, and can’t imagine what it would be like to get some new ones. It may not make sense, if you have breast’s you don’t much like, but mine are okay.
Also, if I get the oophorectomy or have a hysterectomy that means there would be no chance of me ever expanding my family. Not that, I want to do that or anything. It’s just at the back of my head there somewhere, that if I wanted to, I could, you know…
So, my head has been in the sand. I haven’t wanted to think about it at all. And then I began reading the book, The Friday Night Knitting Club, a couple of weeks ago. All I knew about the book was from reading the blurb, and I had no idea what a rollercoaster ride reading the book would be. It was just a novel, when I began reading, but that changed over the course of the book, when the main character is diagnosed with stage 3 ovarian cancer. I felt like someone out there really had it in for me, like if I wasn’t going to get my head out of the sand by myself, then they’d do it for me…
I’ve got myself a group of really neat friends you know who you are who’ve been supporting me through this process of decision, and I have at times wished that they could make the decision for me, or that Mr Sew-Funky would, or that anyone would really. But, I know that it truly is my decision. I’m just a little scared, but I imagine that actually being diagnosed with cancer would be even scarier. I suppose I am luckier because I have a chance to do something about it before the scariest happens and I’m diagnosed with cancer. I’m sorry if I am using silly OTT language here.
I had thought that a decision to have an oophorectomy would be easy, because I saw my favourite grandma and aunty die from ovarian cancer, but none of these decisions are easy.
Sometimes, life get’s hard.
I got the final sign-off from my gynecologist yesterday morning. I’m so glad that I decided to go the whole hog and have a total hysterectomy with the oopherectomy, because they discovered some “abnormal cells” on the Fallopian tubes. The cells weren’t cancerous or even pre-cancerous, but at the stage before all that. It’s scary to think that they recommend only getting the ovaries removed if you carry the brca1 gene, because if I’d gone that way, I’d still have these abnormal cells in my body. :( But Yay, I don’t! So let’s all celebrate!!!
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