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

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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.

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

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Joining FORCEs Conference Philadelphia 2014

There’s so much I have to say about this conference that I don’t know where to start. I am overwhelmed by the whole experience and I’m going to need some time to let it all percolate.

For now though I will say that I am truly impressed by this conference and by the FORCE leadership. It’s a huge event and from a participant’s perspective it went off without a hitch. I know how much work goes into making an undertaking of this size go smoothly and Sue Friedman, Diane Rose, Sandra Cohen, Lisa Schlager, FORCE Philly, and no doubt a lot of people whose names I don’t even know deserve massive props for making it look so effortless. They have created an enjoyable, informative, and important event for BRCA+ women. Bravo!

Some miscellaneous pictures and comments:

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Before the conference, I tried to figure out a loose schedule of events that I wanted to attend by reading session descriptions and googling presenters. This didn’t work out so well, as you can see in the picture above, since there were so many sessions to choose from and often great sessions running simultaneously. I went to sessions in every time slot and came away exhausted and excited. Out of the many sessions that I saw only one was disappointing (mostly because the speaker was visibly nervous–it’s a lot of pressure to talk to these big crowds of BRCA+ people). The others far exceeded my expectations.

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The exhibition area had booths for genetic testing companies, breast cancer nonprofits, surgical offices, and various odds and ends. I came away with tons of free swag and useful pamphlets. I was pleased to see two tables focused on African American women and breast cancer.

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The Basser Research Center for BRCA had several booths set up with information on various studies seeking participants. The biggest one was for a BRCA+ registry. In return for spitting in a test tube and going over your family medical history, participants got this t-shirt. I am more than happy to spit for BRCA+ science and would eagerly do it for any legitimate researcher who asked me to. I’m also thrilled to get a Basser Center shirt and will gladly shill for them whenever I can.

However, there’s no way in hell I’m wearing a shirt that says “Spit for Science” outside my house and this one has quickly been relegated to sleepwear. Y’all, next year please can you give us something a little less gross? I would love one with just a big Basser logo or DNA or something science related on it that I can wear to yoga.

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There were film crews in nearly every session for the upcoming documentary on BRCA+ men, Pink&Blue.

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I know this panoramic view is fuzzy and I tried at least seven times to get a better one with no luck. Still, look at all those people! There’s something wonderful about sitting in a packed room of people who know exactly what you’re dealing with. I’m not usually prone to the warm and fuzzies, but this conference left me feeling optimistic and happy.

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The conference was held in the Downtown Marriott right next to Reading Terminal Market–a fantastic location. I popped in to get lunch and found some cliche pink breast cancer awareness stuff at Carmen’s cheesesteaks. If the line wasn’t so long I would’ve harangued the guy behind the register about where they send the money raised from t-shirt sales. You got away from me this time, Carmen Dude.

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This is a picture of Tara Friebel explaining the cycle of information for medical research during her session on understanding research, risk, and statistics. I have more comments on this that I’ll save for another post. At this point, I will say how great it was to have direct access to BRCA researchers and clinicians like Tara. The sessions sometimes ran long and often there wasn’t much time for Q&A, but most of the time presenters stayed long after to answer questions about individual attendee’s particular situations. Most presenters were remarkably patient and friendly.

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Here’s Andrea from Brave Bosom asking a question of Dr. Steven Narod after his presentation on genetic testing for BRCA founder mutations.  I know it’s a cliche by this point to wax poetic about the potential of the internet to forge connections, but social media has been such an important resource for me while working through BRCA+ issues. It was really cool to finally meet Andrea and other BRCA+ women like Caroline from BRCAumbrella who I’ve been talking to on Facebook, twitter, and blogs. These women are just as awesome in person as they are online–nay, more awesome.

In sum, I have very few complaints about the FORCE conference. There are a few things I’d like to see more of in the future–greater representation for GLBTQ and non-white women and more on the politics of BRCA/HBOC, for instance–but I think FORCE is doing a truly fantastic job with this event. I hope to make it to #FORCE15 next year, which will be held in Philly once again. I thought that I was well informed about BRCA+ issues, but it’s clear to me that there’s even more to learn.

Go sign this FORCE petition for better preventive care for BRCA+ women

The headline says it all. Go sign it.

http://www.change.org/petitions/the-united-states-preventive-services-task-force-uspstf-include-cancer-survivors-in-the-guidelines-on-risk-assessment-genetic-counseling-and-genetic-testing-for-brca-related-cancer?share_id=ElzpRScCjh

Go sign this FORCE letter

FORCE is currently advocating for better preventive care guidelines for BRCA+ women. More information here. Please email Sue Friedman to have your name added to the letter demanding better policies for the HBOC community:

“We have prepared a counter-response to the USPSTF. We are asking all stakeholders to read and sign on to this letter. If you would like us to add your name to this letter, please email us at: suefriedman@facingourrisk.org with your name, city, and state. We plan to submit this letter to the USPSTF by December 10. We will request a written response from the USPSTF and will share their response with the community.”