Should we stop telling BRCA+ women to do ovarian cancer surveillance?

FORCE has a new webinar featuring University of British Columbia oncology professor Dr. Jessica McAlpine on the “Pros and Cons of Hysterectomy at the Time of Risk-reducing Removal of Ovaries and Fallopian Tubes.” Like all FORCE webinars, it’s worth watching.

During the Q&A, someone asks Dr. McAlpine why physicians continue to recommend screening despite the fact that it’s ineffective at diagnosing ovarian cancer (check around the 46:30 minute mark). Dr. McAlpine answers that “three fantastically well-run trials” have shown just how ineffective ovarian cancer screening is. She continues:

“I don’t think anyone’s convinced that screening makes a difference. I practiced in a center in the U.S. where they routinely recommended it, but I actually don’t think that’s correct. I think we don’t have any evidence to suggest those improve things beyond a standard pelvic exam. I think it comes down to prevention, which is you know the focus here here, risk-reducing surgery and otherwise. So I guess, why do doctors suggest it? Probably because we’re frustrated–some physicians are frustrated by their inability to offer anything more. But I think at the end of the day, the studies show an increase in unnecessary surgery with those screening modalities and that it didn’t save lives. So I would have caution with using those modalities.”

Dr. McAlpine’s response reminds me of a rather shocking slide that Sloan-Kettering oncologist Dr. Noah Kauff showed at the Joining FORCEs conference in Philly last summer. It illustrated that BRCA+ women who undergo regular screening for ovarian cancer actually have worse survival rates than those who don’t. 

The ineffectiveness of ovarian cancer screening is very well documented in scientific studies. I also have written a lot about the ineffectiveness of screening for ovarian cancer and my own run-in with what turned out to be unnecessary surgery last year:

  1. Pelvic exams are pointless, like everything else.
  2. HBOC Threat Level Orange
  3. Oophorectomy Sucks

Still, it’s rare to see someone in the greater HBOC community as prominent as Dr. McAlpine so openly admitting that ovarian cancer screening does. not. work. at. all.

What she doesn’t mention is the gut-wrenching anxiety screening causes multiple times a year; the time-consuming appointments and endless waiting rooms; or the onslaught of co-pays and other expenses–just to give BRCA+ women false reassurance.

All this makes me wonder: Why are doctors still recommending ovarian cancer screening to BRCA+ women when reputable scientific studies prove it’s useless? Why is the leadership of the HBOC community continuing to recommend it? Why am I still following through with ovarian cancer screening twice a year like a good little girl scout when I know it’s pointless or even harmful?

I know these are surprising questions for many people in the BRCA+ community. Those of us who are actively involved in HBOC advocacy know the drill: if you come from a cancer family, then getting tested, getting screened, and maybe getting surgery will empower you and save your life. It’s a reassuring soundbite, but it’s not entirely true, because we don’t have effective methods to detect early-stage ovarian cancer and the only way to save the lives of women at high risk for it is oophorectomy.

I’m considering stopping nearly all ovarian cancer screening. At this point, the only ovarian cancer screening that seems worth doing is the CA-125 test. It too is highly problematic and unreliable, but a recent study showed that it has some promise of detecting cancer once it has been administered for many years to establish a personal baseline.

We need to have an honest conversation in the BRCA+ community about whether or not we’re going to continue to encourage women to undergo psychologically, physically, and economically costly ovarian cancer screening that we already know does not save lives.

[This quote is probably misattributed to Carl Sagan, but the point stands]


3 thoughts on “Should we stop telling BRCA+ women to do ovarian cancer surveillance?

  1. Sadly, if you are BRCA+ and want to avoid ovarian cancer for sure, you are looking at oophorectomy with tube removal. The CA-125 test is far too unreliable to stake your life on. This puts women in a game of Russian roulette, trying to game the system long enough to miss at least some of the horrible effects of surgical menopause and possibly still end up with reproductive options, if they want any. My grandmother lost this game without even knowing she was playing it. Odds are lower than getting breast cancer but then again with detection being what it is (damn near zero) this is a pretty horrible decision to have to make. If my daughter turns out to have the mutation I really hope there is a vaccine by the time she needs it so she doesn’t have to deal with this crap.

  2. First, LOVE the picture and quote. Another Rotten quote that applies in CancerLand is: “People like their safe world. They don’t like realizing the way things actually are.”
    Sometimes I wonder about all the scans–mammos, tests for prostate and thyroid included–that are revealed to not be as useful as believed. Is one idea that the public needs to “let go” of our reliance on these useless tests in order for the something better to come about? However, I wonder if these pronouncements only make us cling harder to the useless tests, because that is all we got? It would be easier to stop using these useless screening processes if something better were offered, but since nothing is offered, well, what can we do? It’s like a vicious cycle. Make sense?
    At any rate, I still find myself frustrated that the cancer prevention methods for those with high risk seem to include cancer treatments, like body parts being removed. (note, I do not have the BRCA mutations). Yes, having been through all the horrendous cancer treatments of slash, burn, and poison, only having the slash portion for a prevention is preferable. But I still demand more and better, in my curmudgeonly fashion of course. To me, prevention should be something completely different, that does not require the awful things we deal with to treat cancer. I guess I am just dreaming.

  3. I can’t believe it’s 2015 and our best option to screen for ovarian cancer is woefully inaccurate. To add insult to injury, the screening method entails sticking a giant wand up our vaginas every 6 months….yet we don’t tell women it probably won’t help them at all.

    We deserve better.

Leave a Reply

Please log in using one of these methods to post your comment: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s