BRCA – in the news

The Angelina effect.  Amazing how much press Angelina Jolie has received after the revelation that she had preventative surgery to reduce her risk of contracting cancer due to testing positive for the BRCA gene.  I think it’s a positive thing that she has shared that decision.  I can’t imagine how hard it must be to have generations of women in your family die early (usually) from breast or ovarian cancers.  And as a male who has inherited the gene – would you consider prophylactic surgery?

When my eldest child was about ten years old, the mother of one of his good friends passed away from cancer.  All I knew at the time was that it was an inherited cancer and her mother, grandmother and aunts had all died early too.  I knew nothing about the gene then, in fact, I don’t think many people did.  My son is still very friendly G and I’d love to talk to him about it, but it’s not something I feel I can do.  I know that his elder sister got married recently at about 23 years old and I wondered at the time why so young.  And then I remembered …  she probably wants to get her family started early.  Coincidentally, one of my clients was talking about a wedding she went to recently, that the bride had tested positive for the BRCA gene and I recognised it was the same sister of G.  She is close to the family and also told me that a few weeks after the wedding A had both breasts removed and a reconstruction.  It must have been a difficult decision but I am sure that the relief she must feel from knowing that she has significantly reduced her chances of breast cancer must be a comfort.

I have spoken with Krystal Barter and read all about her story.  She is the founder of Pink Hope (www.pinkhope.org.au) and I find her strength and proactivity (is that a word?)amazing.  Here’s a brief description of Pink Hope, from their Facebook page … “Pink Hope is a registered charity, established and founded by Krystal Barter in 2009 whilst recovering from her preventative double mastectomy. Having experienced the isolation and lack of information for high risk women Krystal created Pink Hope for women like her.”  Krystal’s story is that she tested positive for the gene and there’s evidence of women in her family dying from cancer back to her great-great grandmother.  Each generation of women developed cancer earlier and Krystal’s mother was diagnosed at 36, when Krystal was 14 years old.  At 22 she had the test and positive result.  By then she had a new baby and was in a relationship and felt strong enough to deal with the news.  She had a second child soon after.  But the stress of living with the gene started to really affect her, should she watch and see, monitoring regularly and dealing with it when it came or should she minimise her risk with a double mastectomy.  At 25 she decided to have the mastectomy.  When she went in for her last high risk screening  she was told there were changes to the breast tissue that were not there before – she had signs of early breast cancer – a DCIS.  She had the surgery and tests showed that her cells were about to change, but they had been removed before they were able to do so and she had become the first woman in her family to avoid breast cancer.  She has since had a third child.  Right after surgery, while sitting in her room feeling sore and sorry for herself she decided she would help other women who were faced with the same decision as she was and she started working on Pink Hope.

KrystalKrystal and Bonnie – photo courtesy www.pinkhope.org.au

I have had many women with breast cancer come through my room.  Strangely enough, not many have tested positive for the gene and in one case, even though E had a negative result, she has had breast cancer (three times) and ovarian cancer!  Apparently you can test negative but still have a high tendency to contract cancer (her mother is also a client and she has had a melanoma) – I personally find that a hard concept to grasp, that differentiation.  My client says if she knew then what she knows now she would have done things differently for sure, but other than not being able to have children, her bouts of cancer have not stopped her living life fully.

One of my regulars has just had a double mastectomy and reconstruction because after 25 years of monitoring because she was high risk (no gene) she finally developed a DCIS and decided that rather than spend another 25 years of waiting and wondering, she’d rather reduce her risk with the surgery.  Others have taken off the other breast and reconstructed both.  Again to minimise the risk.  Not quite the same decision, but a courageous one all the same.

What has the Angelina effect meant for Krystal and Pink Hope?  A lot of new media coverage and information being shared with those who need it.  Pink Hope is a charity and receives no government funding, so this extra publicity has meant the possibility of donations from other sources to maintain their website, continue to develop resources and offer support groups.  If you’d like more information, please visit Pink Hope at www.pinkhope.org.au.