Alternative Cancer Therapies | Natural Health Blog

Date: 11/25/2008    Written by: Jon Barron

After Testing Positive for the BRCA Cancer Gene, What?

BRCA Cancer

Many of us live in fear of getting cancer, but what if you knew that you stood an 85 percent chance of getting a particular form of the disease? Would you lop off body parts in an attempt to outwit the cancer?

A recent documentary on PBS profiles women who have tested positive for the BRCA gene mutation, which according to "reputable" medical sources, puts those women at an 85 percent lifetime chance of developing breast cancer, and a 50 to 60 percent chance of developing ovarian cancer. Based on those odds, those women face an agonizing choice: should they have preventative surgeries -- radical mastectomies or oophorectomies -- even though they show no sign of cancer at the moment?

For the documentary's central figure, Joanna Rudnick, (who also is the filmmaker), the choice is particularly poignant, as she's only 27 years old at the time of the filming and she's already tested positive for the gene. "When I first found out I had the mutation," she says, "I didn't tell anyone. In fact, I had even told a good friend of mine who knew I was getting tested that I tested negative. That's how I felt about the information. It was stigmatizing; it was confusing; it was painful; it was frightening; and the last thing I wanted to do was talk about it to anyone."

The film focuses on young women like Joanna who believe they have limited choices -- either live under the constant specter of doom, or have the preventative surgeries.

"The only true preventative measures right now are the surgical removal of healthy organs," says Rudnick -- and by that she means both mastectomy and oophorectomy, because one surgery alone doesn't reduce risk enough. In fact, at least 20 percent of women who test positive for the gene now opt for both surgeries, and there's plenty of encouragement from the medical establishment to go in that direction. According to Dr. Mike Janacek, Director of the Genetic Risk Assessment Center at the Piper Medical Center, the double surgeries reduce the risk of developing these cancers by 90 to 97 percent. He's vehement in his assertion that every woman who tests positive should absolutely follow through with the surgeries.

Influenced by such authoritative voices, people like Ms. Rudnick don't so much ask whether or not to have the surgeries -- they ask when. "My mother was diagnosed with ovarian cancer at 43," she says, "and I feel I have to have my ovaries out before then to be safe. I still would like to have children, and I'm 34 right now, so I'm waiting until I have children, hopefully, before I get my ovaries removed. The breast surgery, I'm considering doing soon, and let's just leave it at that."

While the women profiled in the show uniformly insist that they wanted the knowledge gleaned from early testing so that they can take proactive measures to avoid cancer, viewers can't help noticing the emotional suffering triggered by having that knowledge so early in life. Rudnick tried to get tested privately, because she was concerned that insurance companies would turn her down for medical coverage. Her boyfriend broke up with her because of the impact of her test results. She moves through life worrying, taking constant tests, feeling that "these diseases are, in some ways, constantly knocking at my door, waiting for me." And other women interviewed in the film echo her experience.

Perhaps the surgeries would be worth it if in fact they truly were as much of a life-saver as Dr. Janacek and many of his peers suggest. But the sad truth is that women often rush into prophylactic surgery armed with inaccurate and incomplete information.

As I wrote in a blog last January, a study published in the The Journal of the American Medical Association reported at that time that the link between the BRCA gene and breast cancer had been overstated by a wide margin. Rather than the 90 percent risk figure so often quoted, the researchers found that the actual risk was at most 52 percent, and in many cases, as low as 36 percent. And that preventive surgery at best only adds three to six years of life for a 30-year-old woman, and only when she also has both ovaries removed. Is it worth losing both breasts before age 40 and becoming sterile in order to possibly gain a 36% chance at just 3-6 years? Remember: having the double surgeries doesn't protect a woman from developing other cancers.

On top of that, it's not necessarily all in the genes. Otherwise, why would the gene mutation without a matching family history account for only five percent of all breast cancers? And remember, family history does not necessarily mean genetics. If an entire family shares dietary choices, environmental exposure, and lifestyle choices, these things certainly will create risk factors that all family members share in common. Improving lifestyle and environmental factors may well reduce the risk even for women with mutated genes. In fact, new research reveals that even without the BRCA gene, women who have a strong family history of breast cancer stand a 40 percent greater than average chance of developing breast cancer themselves -- a fact Dr. Janacek and his peers conveniently forget to communicate. According to your perspective, then, this can be viewed as further evidence that shared lifestyle factors may play an even greater part in the development of these diseases than does the shared gene.

Considering the profound psychological suffering that women undergo after learning that they have mutated genes, one would hope that whatever health decisions they made would be based on a full understanding of the facts so they could choose wisely whether to compound that suffering. It's certainly heartbreaking to learn of women in their 20s and 30s who feel that they've been issued an imminent death sentence and who believe that they have no choice other than to mutilate their still healthy bodies in order to stay alive -- especially when the facts may not support that choice.

:hc

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Comments

  •  
    Submitted by dd on
    December 1, 2008 - 12:24pm

    Sheryl, I can't fault you for your reaction to the news of testing positive for BRCA. Each must do what she feels is right for herself.
    I personally would not view it as a coin toss, rather, a wake up call. Maybe I need to make some changes, diet, supplements, lifestyle. Those are considerations I would ponder first, before making the decision of going under the knife.

  •  
    Submitted by dd on
    November 25, 2008 - 3:48pm

    I question the ethics of a doctor who recommends and/or performs mastectomies and oophorectomies on perfectly healthy women.

  •  
    Submitted by jesse farr on
    December 21, 2008 - 6:33pm

    Sounds like much better odds than prostate cancer for aging men; yet, I do not see anyone recommending prostate removal when you hit 40 or 50. Would there not be some possibly prevention and/or guarding treatment development possible? Like reasonable interval monitoring and proton beam or hifu usage when such shows? Obviously something I know nothing about but something in need of thought and discussion.

  •  
    Submitted by Jimmy on
    May 28, 2009 - 6:46am

    PLEASE! for a change can we focus on the woman that have tested positive after being diagnosed with the damn disease, breast cancer. These are the woman we should be studying, what course of action they took, and the real differences between that course of action typically being a lumpectomy versus a mastectomy relative to recurrence of the cancer! This is what is most important through all this. If we had any real research into this maybe not as many woman would be so quick to have a mastectomy! This is so ridiculous. I'm tired of all the talk about those who have not even cntracted the disease yet. Let's focus on those who have!

  •  
    Submitted by kathy massey on
    December 22, 2008 - 4:59pm

    4 women in my family have been diagnosed with invasive breast cancer; myself, two first cousins, and their mother. Mammograms of ""healthy"" family members also consistently show breast density as well as fibrocystic disease of both the breast and ovaries
    Family history aside, if cystic breasts are a precursor to cancer, rather than lob off our womanhood as a preventative measure, why not try IODINE supplementation as the first course of action? I only recently have come across this promising research. Pelvic scans have revealed extensive cystic disease, which I am confident will be cleared from Iodine. I started taking a consentrated form just recently.

  •  
    Submitted by Bella on
    September 17, 2014 - 2:24pm

    How is it going with iodine? I heard about it too. I had BC last year, all removed but I'm doing everything to prevent recurrence.

  •  
    Submitted by Sheryl Hood on
    November 30, 2008 - 12:38pm

    I finished reading the article on the BRCA gene and have found myself needing to give a reply. I myself am positive for BRCA 2 and I am only 32. My mother had breast cancer so when I developed a lump I went straight to having the BRCA test. I have seen 3 oncologists and get the same information packaged in nice compliments that make this seem a little less than necessary to address. Its all a matter of how long you want to flip a coin and wait for the inevitable. I myself and doing the preventative bilateral mastectomy and hysterectomy vs. five years of pills and tests and labs. This is not even a choice for me. I was born with this and I want to be there for my daughter if she has to go through the same thing one day.

  •  
    Submitted by Brooke on
    April 26, 2013 - 9:56pm

    Thank you. I am also not wanting to flip that coin and take the chance of being sick and stressed. I keep telling people ' I love to gamble at a casino and odds similar to that of BRCA gene, I wouldn't put my money on that gamble so why would I bet my life on it!' I am 30 abd have BRCA 1 and I'm scheduled for my mastectomy and reconstruction.

  •  
    Submitted by Victor Virdi on
    December 25, 2008 - 10:10pm

    I have been through surgery, chemo-therapy and radiotherapy for a Sarcoma in my throat, between 2002 and 2008. I have also done extensive research into what cancer is, and the many other, non Western Medical views of cancer. I have also received extremely personal psychological help from Mary Molly of the Biodynamic Clinic in London, and believe cancer is a symptom and not a disease.
    I am not alone with this view. A test which shows a propensity of certain cells to mutate quicker than normal cells in that group is only showing you a symptom of something going wrong in the body - ie something you are not paying attention to. Cutting off limbs or body parts will not address the underlying distress to the body.
    It is better to begin to look very seriously at one's lifestyle, including diet, stress, self-image, self-feeling, love etc. We are how we think/feel we are. Raw food is best. Clean water, but also, most importantly, do we live with a view that our life is shrinking or expanding? Do we see life as a battle or a gift? It is this aspect of your psyche that must be willingly looked at to cure yourself. Also believe you can be healthy and well again and make the effort. Believe in your immune system!

  •  
    Submitted by Kathy on
    June 28, 2016 - 5:18am
    Virginia

    I'm looking for a support group for women like me who are BRCA +, without cancer, who are looking for alternatives to a mastectomy.
    Eight years ago I watched that PBS show, I panicked and filled with fear (not peace) I underwent an oopherectomy. I had multiple complications from this surgery.
    Please share any support group information you may have. TY

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