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?
4 comments:
Since tumors can be estrogen-fed, I'm really curious whether being on birth control is going to affect my getting cancer sooner or later. (Though, I should note, not enough to give it up.) People used to think so, but that's when the hormone doses were significantly higher. So I don't know. No one I've been to has ever been particularly worried about it.
Also, I've read a lot of conflicting reports on soy. Some thinks it helps prevent breast cancer, some the opposite.
Prophylactic Oopherectomy is interesting. I've never heard of that as a preventative measure.
OK so sounds like Weight Watchers and broccoli is a good combination for me :)
Thanks Megan!
Medicine has become a wonderful thing, but sometimes too much information can drive you crazy. I've always tried to watch my weight(that's why I walk 3.5 miles daily ) and I try to watch what I eat ( everthing in moderation) , I mean we still have to LIVE and ENJOY ourselves.
Firstly, I am REALLY glad you did this post. Everyone needs to know about their options.
Let us not forgot the CA-125 blood test for ovarian cancer. It is not a perfect test yet but doctors seem to think it's a good start for women who aren't considering the oopherectomy just yet.
Women younger than 40 should NOT be getting mammograms at all. Firstly, they aren't sensitive enough to detect abnormalities in dense breasts. The younger you are, the denser your tissue is. The older you are, the fattier your boobs are (fun, huh?) What is KEY in this is that mammograms increase a person's exposure to radiation. If this beings at 25 and the film is difficult to read for years, women in our shoes are exposed to a TON of radiation over a long period of time.
There is A TON of research out there stating that MRIs should be the standard of care for BRCA patients. If the research says it's our best bet, patients really really need to be fighting for it. Believe me, it's a much lengthier process but it's worth it. I started my mamms. at 24 and just last year (at the age of 29) my nurse practitioner stopped them altogether and I'm now doing MRIs yearly. Like I said, go to your doc's with the research. This is science folks!
re: birth control. Yes, breast cancer CAN be estrogen fed. I don't have the numbers/details on which types are but if you have a significant family history (BRCA+), then you should strongly consider using a form of birth control that has zero hormones. I'm really going to open up here ... I discussed this AT LENGTH with my Ob-Gyn (who's a BRCA specialist) and I PUSHED to get an IUD. I know, I know ... the press in the 70s about the IUD has people freaked out but it's AMAZING! It is the best thing that has ever happened to me and I try to preach the good word about it. I use the copper-t (ParaGard) cause it has no hormones. This means no mood swings, no cravings, no headaches and NO ADDiTIONAL estrogen in my body. Woohoooo!!!
re: soy. Hmmm .... soy does have naturally occurring estrogen in it though I would think you'd need to be living on it day-in and day-out for it to contribute to your BC risk. Soy has a ton of health benefits so I think in this instance, a good moderation of soy is ok ;-)
re: additional weight loss/dietary things to decrease your chances. Hmmmm, the jury is really out on this based on my family history. I do not want to be Debbie Downer at all here and I really do support anyone's decisions. With that being said. It's great to always be healthy and to eat your 5-a-day. Just think.... if we BRCA girls didn't worry about fruits and veggies, the irony is that we'd probably get colon cancer ;-) So ... eat a balanced meal, walk 10,000 steps a day, etc. However, my father's 3 sisters are ridiculously healthy and have had A LOT of recurrence. Thankfully they're all kickass and have continued to beat it, but being BRCA positive is a lot different then the rest of the worries of the general population. Sometimes this mutation is angry and fights against all our good choices. So don't stop making good choices. But just know that the general population with a 12% risk should approach lifestyle/surveillance/treatment very differently then BRCA girls do.
(This was so long again, I am so sorry! I linked to you on my site. Rock on Megan - I'm always thinking of you!)
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