For My Sister

Awhile back, I asked people for suggestions about what to write. Although I got a few, most people didn't offer up anything, and so congratulations - what you got is my soapbox post ;-)

My sister did ask about what preventative measures those with the BRCA mutation can take to prevent cancer or a recurrence. And I ignored her. So, here's a discussion about what can be done.

First, set aside the question about whether or not to get the genetic testing. We kind of already talked about that. Instead, let's talk about the options on the table. Note that I am not an expert, and most of this is stuff I've collected from articles or websites, some from medical journals, etc. I may be wrong. Feel free to correct me.

Increased Surveillance

What it is: Getting more frequent or more aggressive diagnostics tests. This may mean getting mammograms earlier than usually recommended, getting MRI's in addition to mammograms, or increasing frequency of self-breast exams (or breast exams by a clinician).

How it works: With increased surveillance, you are hoping to catch cancer at an earlier stage. Increased surveillance does not prevent cancer, but if you do catch it sooner, theoretically you may detect it before it metastasizes or requires more aggressive treatment.

Statistics: I was unable to find any statistics on how effective this is, but it's a no-brainer. According to many guidelines, those who have the BRCA mutation should begin getting mammograms at age 25.

My opinion: Amen. If I had done this, I may have found my cancer sooner.

Prophylactic Mastectomy

What it is: Removing one or both breasts to prevent breast cancer. In this way, having both breasts removed is referred to as a prophylactic bilateral mastectomy (PBM). In some cases, a woman may choose to have the opposite breast removed after being diagnosed with cancer in one breast (this is because the chance of recurrence is higher in the other breast, presumably because it hasn't been treated) - this is referred to as a prophylactic contralateral mastectomy (PCM).

How it works: By removing breast tissue, there is less tissue where cancer can form. In the case of a prophylactic bilateral mastectomy, very little tissue remains, so the chances of getting breast cancer is very small, but it can still happen.

Statistics: According to one study, PBM reduces the risk of getting cancer for BRCA mutation carriers by about 90% after a median followup period of about 13 years.

My opinion: We'll leave that for another blog entry.

Chemoprevention

What it is: Chemoprevention refers to using drugs to prevent cancer. It does not mean receiving chemotherapy (in the traditional sense) before being diagnosed with cancer.

How it works: The most prevalent drug used for this technique is Tamoxifen, which blocks the effect of estrogen on breast tissue. It's also used to prevent recurrence in cancer survivors. BRCA1-related cancer is generally not estrogen-receptor positive, so there is disagreement in the medical community about the appropriateness of using Tamoxifen for this group.

Risks: Tamoxifen can cause serious side-affects, such as blood clots, stroke, uterine cancer, cataracts, and menopause-like symptoms.

Statistics: One study concluded that the use of Tamoxifen for BRCA2 mutation carriers reduced the incidence of cancer by about 62% (I couldn't find the followup period on this study).

My opinion: I already know I will take this drug after my other treatments, but for those who are trying to prevent cancer in the first place, I am very intrigued by this option. Normally, patients take this drug for 5 years. We asked Mr. Wizard about this, and he said that 5 years isn't a magic number. In one sense, 5 years is practical - it's often difficult to follow up with patients for loner periods. Also, they found that giving the drug for longer generally didn't result in improvements, so 5 years it is. But I wonder - are things different because I'm so young? I know my grandmother took Tamoxifen, and then discontinued after 5 years (it might have been longer, I can't remember), and then she had a recurrence. After treatment, she now refuses to stop taking the drug (I don't blame her!). But would a young, BRCA2 mutation carrier benefit from taking this for 5 years? Would that only delay cancer? What if they took it forever?

Prophylactic Oopherectomy

What it is: A risk-reducing salpino-oophorectomy (RRSO) refers to the removal of the fallopian tubes and ovaries.

How it works: The surgery will introduce a woman's body to early menopause, because the ovaries will no longer be available to produce estrogen.

Risks: Removing the ovaries increases the risk of cardiovascular disease and osteoporosis.

Statistics: New studies have shown a significant difference in the effectiveness of RRSO for those carrying the BRCA1 vs. BRCA2 mutation. The study only followed the groups for 3 years, so it doesn't help me much (being cancer-free until age 30 isn't quite good enough for me). The surgery reduced the risk of recurrence for BRCA2 carriers by 72%, which is supposedly almost double that of BRCA1 carriers. More generally, having an RRSO has been shown to reduce the risk by about 50% for BRCA1/2 mutation carriers after 3 years.

My opinion: Originally, I was really pulling for this option because I didn't really want to have children anyway. Keeping my boobs and not having children? No problem! Unfortunately, a 3 year followup period isn't enough data for me. I'm sure RRSO helps, but I don't think this is something that I can count on alone. I'm also concerned about the osteoporosis and cardiovascular disease. While this is something I am considering doing, it can't be my only defense. Also, for those who have not been diagnosed, I wouldn't consider it effective enough.

Miscellaneous

There are lots of things I've read about that can reduce breast cancer risk, but there are two that really stuck with me. One is that weight loss and eating a low-fat diet has been shown to reduce recurrence. Another is a compound found in broccoli and broccoli sprouts.

My question to you is, what kind of non-traditional things have you heard of that have been linked to a reduced risk of recurrence or initial diagnosis of cancer?