As my one year anniversary of getting a PBM nears, I can’t help but think about how far I’ve come in this journey.
I mostly tend to think about each and every woman that has had to face down their fears by taking in all of what it means to be diagnosed with a BRCA mutation. I think about their families and friends. I think about how scared they are and how much information is being thrown at them in such a short amount of time. I think about myself and how lucky I was to learn about my BRCA2 mutation. I think about how if my sister had not been diagnosed with breast cancer at 38 years old then it would have been me. Because let’s be honest – who thinks about self breast exams in their 20’s and 30’s, especially when they’ve never had a family history of the disease? Not this girl!
And apparently not my sister, Heather, either.
I know that my outlook on things tends to be bit more cheerful than most (sometimes to the point of annoying), but I honestly believe that knowing about this BRCA mutation is a gift. One hell of a gift, I might add! Once you put aside the very real fact that it totally sucks (because it does), you can finally start to piece together the more positive side of the situation.
For all of you BRCA babes out there that are currently struggling with your decision on whether or not to have a prophylactic mastectomy when you don’t have cancer “yet”, do yourselves a solid and read the following post that my sister has so graciously decided to share with PREvivor GENEration. It will change your life. I know it did, mine.
A note from Heather:
For all the BRCA positive girls questioning whether or not to get a bilateral mastectomy as a preventative measure (and for those who have gone through with a preventative mastectomy, only to doubt whether or not you made the right decision), this is for you: YOU HAVE BEEN GIVEN A GIFT.
In this case, knowledge truly is power and you have the ability to change the course of your life in a positive way forever. Let me back up a bit and explain: I am Amy’s sister – the one who got cancer.
By now, you are likely aware of the statistics that everyone quotes (if you are BRCA positive, you have a 60% – 87% chance of developing breast cancer over the course of your life). Basically, your chance of developing breast cancer is much higher than the general female population (and that goes for ovarian cancer as well). Are you aware that, as a BRCA positive gal, if you do get breast cancer it will be an aggressive form of breast cancer? For whatever reason, us BRCA gals get the more aggressive types of breast cancer (yes, there are varying degrees of aggressiveness). What does that mean? It means that the cancer grows extremely fast and tends to spread to other sites in your body (metastasize) more quickly. That means that it is harder to catch before it begins to spread. Once cancer metastasizes, it is no longer about beating it. Instead, it is about how long you have before you die of breast cancer. Something else you need to know: more aggressive forms of breast cancer can have a higher risk of recurrence (especially if you are a triple negative girl like me). Also, it is much more likely that you will get cancer at a younger age than the average breast cancer patient – it isn’t uncommon to see development of breast cancer in BRCA carriers in their 20’s and 30’s.
Take it from someone who had breast cancer: you don’t want it. You should do anything and everything you can do to prevent it. And I’m not talking about the side effects of chemo (although they really do suck). I’m talking about dying much younger than you should and from something that you can prevent. I’ve read comments from BRCA positive gals on various blogs saying things like “I will wait until I get cancer and deal with it then” because they don’t want to deal with the “horror” of getting a mastectomy. I cannot tell you how much that baffles me. News flash: you may find it too late to be able to “do something” about it. Even assuming you make it through treatment cancer-free and don’t have a recurrence, why would you want to put yourself and your family through the physical and emotional cancer ringer if you don’t have to? Trust me, getting a bilateral mastectomy preventatively is a much better option than being faced with the horrors of going through actually having cancer and all that entails. Also, it is truly amazing what a good plastic surgeon can do (and getting the mastectomy preventatively guarantees preservation of your nipples, which you may not have the luxury of once you get breast cancer).
Imagine being a 38 year-old mother of two boys (ages 6 and 2) and finding out that you have an extremely aggressive form of breast cancer (triple negative, with a Nottingham score of 9 – I urge you to look up what those mean). That was me last year. Luckily my treatment went extremely well and I am currently cancer-free. However, the cancer can still come back (and I don’t really want to go over what my chances are if it does, because they aren’t good).
Finding my tumor when I did was frankly a fluke (or maybe a gift from God). My oldest son accidentally hit me with his elbow on my left breast really hard – so hard that I bruised. Strangely enough, he hit me right where my lump showed up. Six days later I found the lump while checking to see if my breast was still sore. Note that I had felt that same spot only 6 days earlier and had felt nothing. As my Nottingham score indicates, my tumor was growing seriously fast (my lump started at about 3 centimeters when I first found it and went up to close to 5 centimeters just 12 days later). Had my son not hit me with that sharp elbow of his, I wouldn’t have caught it for some time thereafter. After all, I didn’t know I had a BRCA mutation and we don’t exactly have much breast or ovarian cancer in our family history (I was terrible about self-exams). I found my cancer early enough that it hadn’t spread to my lymph nodes or anywhere else in my body. Just a few more weeks and my cancer would have at least spread to my lymph nodes (which makes a big difference in prognosis).
If you are thinking that you will be much more diligent and be able to find it quickly because you know you are BRCA positive, think again. I know of someone who knew they were BRCA positive and chose not to get a bilateral mastectomy. She thought that she would catch any breast cancer in the very early stages because she was getting scans and check-ups with an oncologist every 4 months and doing regular self-exams. Unfortunately, she recently found out (through a regularly scheduled scan) that she has Stage III breast cancer. She didn’t catch it in the early stages after all. Do you really want to take that chance?
I am doing well now, but until I get past the 5 year mark, I don’t feel comfortable saying that I “beat” breast cancer. Since my cancer was triple negative, I have a higher chance of recurrence (the recurrence rate for triple negative cancer starts around 30% and goes down from there). Luckily, it is less common to have a triple negative recurrence after the five year mark (since it spreads so quickly and is so aggressive, it doesn’t take its time to show back up). I personally cannot fathom the cancer coming back and I don’t live my life worrying about it. It is more a “fact” that I live with each and every day. I worry sometimes that because we hear so many positive stories about people beating cancer (which is great), that sometimes people forget that women still die from breast cancer. It happens. While undergoing treatment I met a woman who has Stage IV (metastatic) breast cancer. Someone was asking her about her prognosis and she simply said “I will live with breast cancer as long as I can until I die from it”. She was in her 40’s.
My point is this: why chance it when you can do something about it preventatively? Knowing about your BRCA mutation before getting cancer is a game changer. Yes, you will lose your breast tissue and have scars. You may not look “perfect” anymore (let’s be honest: you don’t look “perfect” now). However, that is merely cosmetic. There is so much more to life than that. Use your “gift” of knowledge before ever having to deal with breast cancer and do something about it – because you are worth it.
Breast Wishes –