Sunday, May 19, 2013

The Jolie Buzz

Over the past few days the world has been talking about Angelina Jolie's op-ed piece in the NY Times about her choice to have a preventative mastectomy.  When I read the article  and a few other pieces I learned that Jolie's mother, Marcheline Bertrand had died of ovarian cancer when she was 56. I also learned Jolie carried the  BRCA mutation. I don't remember hearing about Jolie's mother until now.

Then the hoopla started. People supported her. People opposed her decision. People said she did it cause she was famous and it was a disservice to women. The twitter stream was alive with comments. The post "Brainless and boobless actress chooses mutilation over common sense" in particular prompted many comments from breast cancer survivors. Then there were more level headed opinions such as  "Don't Judge her..." , "Angelina and Mastectomy..." and "Opinion What Angelina Forgot to mention". 

I think much confusion is caused because there needs to be a greater understanding of what risk means when it comes to cancer. If you want to learn more about the risk of ovarian cancer there is a great video produced by NOCC in their Ovarian Cancer Education Series called Understanding the Genetic Risk for Ovarian Cancer. It features Dr Kristin Zorn. It is long but worth viewing.

All I can say is that I believe that Angelina made an informed decision that was the best option for her and celebrity or not she had every right to make the decision.

If she decides to have her ovaries removed I support her 100% but would like her to think about getting her fallopian tubes removed too- more and more research is citing that Ovarian Cancer may originate in the fallopian tubes.

Every Day is a Blessing!


Karen Herrmann said...

I think there should be a REAL understanding by the doctors that women see the most often for advise..OB/GYN and even family physicians, that the risk is NOT just for breast cancer. I believe that the standard surgery for BRCA carriers who choose it, IS removal of both ovaries and fallopian tubes. That is what is has been recomended for years and years.
I too, carry the BRCA gene mutation after I discovered I had breast cancer and was fairly young (43). I had a lumpectomy, chemo and radiation and have not had a re-occurance of it (2004). In late 2008, I chose to have surgery to (hopefully) prevent ovarian cancer went to an OB/GYN for surgery. In early Jan 10, 2010, I had some vaginal discharge (I had been pm since my chemo) so I immediately went into the Dr and had a sonogram which showed "something". They did a biopsy on the fluid and some uterine tissue and found it to be cancer. When I went to a GYN oconcology surgeon, the first thing she asked me was, "Why do you still have your fallopian tubes? It says here you had your ovaries removed because of a BRCA mutation..." I knew an oophorectomy was ovaries, but did not know salpinga was fallopian tubes. I thought he was removing whatever it was that I needed to have removed. The consent form stated "oophorectomy and/or salpinga". Turns out that the OB/GYN "examined" my fallopian tubes and thought that they looked fine.
I had surgery to remove everything left - it had spread down into my uterus and there were a few cells in the omentum but nothing else found. Last October it was discovered that I had cancer in the peritoneal and went through chemo again and as of now, there is no evidence of cancer...I am on Avastin and hopefully that will keep it at bay for a while.

I have three daughters, one (26 years old) of which has been tested and she also has the mutation. She sees my oncologist this week to learn what her screening and other options might be. She saw her regular Dr last week and was discussing that she may elect to have her ovaries and fallopian tubes removed once she is done having children and her regular Dr said she would rather see her have a double mastectomy and reconstructive surgery and wait a few years, maybe until she is in her early 40's, to do anything else because of the increased risk of bone loss. What??? I have had not only breast cancer, but also ovarian/fallopian cancerby the time I was 52.
I don't honestly know what the oncologist might suggest, maybe it will be the same thing, but as someone who has had breast cancer and almost symptomless fallopian cancer that occurred so quickly after having my ovaries removed and still it had spread, I would lot rather deal with some bone loss than the dismal outcomes there are now for those who have ovarian/fallopian cancer. If there were some good screening tests, maybe I would feel differently. At least with breast cancer, doing self breast exams and mammograms are a way to pay attention and we have great treatments if it is found fairly early. I don't know if I would have chosen mastectomy if I had known before, that I was at risk for breast cancer or not, but ovarian is seldon found at an early stage and I do think I would elect to have my ovaries and fallopian tubes both removed if there had been information available 25 years ago, that there is now. Sorry, this is such a book. I really enjoy your blog and the information you put out there.

Dee said...

Thank you so much for your comment. Everything was important for women to hear.

I also have a daughter who is 31 and her doctors are keeping a close eye on her. My gyn-onc suggested to her that when she is done having children she should consider having an oophorectomy and fallopian tubes removed.

I'm glad you find my blog useful.

Chasen A Cure for Ovarian Cancer said...

Karen and Dee, My sister and I had been advised by my mother's gyn-onc to have the surgery. That was back in 1992. My sister continued with stringent observation and was diagnosed with OC in May 2010 - 6 mos after our aunt died of OC. She is a fighter, has a highly respected gyn-onc and is battling every day. I had the surgery - complete debulking - 4 mos after my sister's diagnosis. I will never regret having the surgery and believe that my overall health has improved. May you and your daughters continue with your vigilance.