Recently I spoke with a young woman whose mother died of breast cancer at a young age. She is in her early 30s and trying to decide if she should take the BRCA mutation test. I am not a doctor (and don’t play one on TV), but I gave her my personal opinion…She asked me if I took the BRCA mutation test – for those not familiar, the BRCA is a breast cancer gene test that checks for mutations in your genes called BRCA1 and BRCA2. The test will tell you if you carry a mutation gene which greatly increases your chance of getting breast and/or ovarian cancer. The test is pretty simple – just a quick blood test – the 2-4 week wait for the results is the hard part (at least me).
I told her that after I was diagnosed with breast cancer I took the BRCA test and tested positive for Hereditary Breast and Ovarian Cancer Syndrome (HBOC), which is why I decided to have the double mastectomy.
She asked if I had ever considered having the BRCA test before I got breast cancer and I told her that yes, I thought about it, but no, I didn’t want to take it. Then she followed up and asked if I regretted that decision, since I got breast cancer. And I told her that I didn’t regret my previous decision at all. She seemed a little surprised by my answer, but I explained my rationale…
First, let me say that I love and trust science. When deciding on my treatment plan (lumpectomy or double mastectomy) I said it wasn’t up to me – it was up to the test/science. If my BRCA test came back positive, I’d have the double mastectomy, if it came back negative, I’d have the lumpectomy. (Side note: I think this is why I am having a difficult time now. I made the decision based solely on science and never even considered the emotional side. I simply said, “Here’s how I’m going to handle this.” Without putting any further thought into it … now, I do nothing but think about it).
That being said, I didn’t (and still don’t) believe in having the BRCA test in advance – for ME. Testing BRCA positive does not guarantee you will get breast or ovarian cancer – it just means that you have the gene and increased odd – that you might get cancer. That is totally good information to have … maybe. But I posed these questions to her, “If you took the BRCA test now and tested positive – what would you be willing to do? Are you willing to remove your breasts and ovaries because you might get cancer? What would you do differently that you’re not doing now?” (Note: earlier in the conversation she told me she conducted self-exams and got annual mammograms and stayed on top of her health because of her family history).
I told her when my family tried to talk me into BRCA test in the past that I adamantly refused – I didn’t need a gene test to tell me that I might get cancer, trust me. I have a rich family history of breast cancer: My sister got it when she was 26; I had a cousin get it when she was 24 (and pregnant); I’ve had an aunt who had it three times; and two other aunts who had it; and my grandmother had it – all who survived this horrible disease, thank the Lord. In addition, my mother tested and some of my female cousins tested BRCA positive and they’ve had preventative mastectomies (all maternal). So yeah – I didn’t need the test to tell me my odds were pretty high.
I would not have done anything differently. I was not willing to give up my breasts or my ovaries because I might get cancer, so what purpose would the test have served, other than to completely stress me out? My family history alone stressed me out enough – but I was (and am young). I told myself that when I turned 45 or 50 years old I would have the BRCA test because by then I would be willing to take action. But in my 20s and early 30s, with a small child, trying to date … I was not willing to do anything so the test, in MY case, would not have served any purpose.
I had just turned 35 years old when I got diagnosed with breast cancer. I have always stayed on top of my health – annual mammograms since I was 25, self-breast exams, annual pap smears and physicals with my primary care physician. I did everything that I could, and was willing, to do.
I caught my cancer in stage 1, because I got my annual mammogram – and I am truly blessed – like, truly blessed – because I had a lot going on at work and at home and I almost just cancelled the mammogram altogether; I had two doctors perform breast exams, plus my self-exams and I was fine, there were no lumps. I’ve maintained that all the way until I went into the hospital for my double mastectomy, I never had a lump or any other indicator that I had breast cancer and by the time I had my mastectomy, I was 2 mm from being stage 2. So self-exams are important, but they are not the only indicator. I have always been an advocate of mammograms, but after my experience, I implore all women in their 30s to start getting annual mammograms and if you have a family history of breast cancer – get them in your 20s! Breast cancer does not have an age, although it’s not as common for young women to get breast cancer it does happen.
So to wrap it up for anyone who is considering the BRCA mutation test – it’s truly a personal decision, there are pros and cons of getting it and not getting it. I would just suggest that when it comes time to making your decision on whether to get the test or not you ask yourself these questions:
- What would you be willing to do if you tested BRCA positive?
- Are you willing to remove your breasts and ovaries because you might get cancer?
- What would you do differently that you’re not doing now?
If you wouldn’t do anything differently, and already know that you have a chance of getting breast cancer, then I would recommend just staying on top of your health and making sure you get screened annually. If you would be willing to have a mastectomy (I am sure, with reconstruction) and a hysterectomy, then I think the test would be good thing to do.
At the end of the day, it’s your personal decision. Doctors, family members and friends may try to persuade you one way or the other – but you’re the one who has to live with the results – positive or negative – so don’t make the decision lightly or uniformed.