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Angelina’s Mastectomy…. Mistake??

ImageDid Angelina Make a Mistake?

When Angelina Jolie came out to say she had a prophylactic double mastectomy after a genetic mutation was found and since she has a strong family history of breast cancer, I started to receive messages from people saying, “What is with people chopping off their body parts just in case?”  Then, in the media, I saw a great fear that women with early stage cancer that is not genetically predisposed will follow suit.

I find it might be helpful if people can see this from outside their individual perspective. Let’s really get into the shoes of someone early stage who has thought about this.

When I was diagnosed with breast cancer, I wanted to treat my body with love and not fear. I was a healthy 35 year old. I didn’t have genetic risk factors. I took the most non-toxic path after lumpectomy surgery because I feared the chemical and radiation treatments even more than a cancer recurrence at that time. I had other tools for prevention and I had a lucky diagnosis.

Since 2005, I’ve worked as an advocate for integrative care and founder of You Can Thrive! In that capacity I’ve worked with around 450 women who have gone through every type of breast cancer. I want to say that after helping women navigate those journeys, and having multiple tests, biopsies and scares myself, I have considered the same option, even though I do not carry a BRCA mutation.

Yes it’s true. I even called a very well respected surgeon and asked if he could give me a perky matching set that would never have to be squashed and radiated or poked and probed again. He responded “It’s not your breasts that are the problem, it’s our diagnostics!” He went on to say that he can’t stand removing healthy breasts. He was direct and truthful.

BRCA mutation factors seem to show a pretty good indication that a woman will likely develop the disease. A woman who tests positive for one of the BRCA gene mutations can have as high as a 60-80 percent chance of eventually developing a breast cancer. Angelina stated hers was more like 87 percent. Add to that a mammogram every 6 months for “early detection,” which can increase risks and anxiety as well. Then enhance it with an increased risk of ovarian cancer, which is seldom found at early stages. That’s a heavy load. Now consider this:  you get this genetic mutation information and you’ve already seen others that you love, perhaps family members, go through cancer and it’s associated treatments. Maybe they died after a prolonged struggle. Maybe you have beautiful kids you want to see grow up. Suddenly, losing a body part can start to be insignificant.

Since my diagnosis in 2004, surgery methods have improved dramatically.  Most patients no longer have to lose their nipples or have weird unsightly breasts. But diagnostics have not changed one iota. It’s still the same faulty thing that brings me back each year. It wears you down.

When I asked the doctor about removing my healthy breasts, it was just after another yearly mammogram. I got a call back, and they now wanted to do three more biopsies. Two of these were on the breast that never had cancer. These biopsies turned out to be negative and they left my healthy breast scarred. They were also very traumatic, probably even more traumatic than the lumpectomy for the original cancer because I was awake. I believe this was the sixth biopsy for me.

So you see, every year leading up to the test, a woman deals with the same emotions. During the diagnostic test the same post traumatic stress of being diagnosed, or seeing someone else diagnosed comes back. Then, they squash and radiate some of the most radiation sensitive tissue in the body, exponentially increasing the risk.  For me inevitably, I received a call that they need biopsies of suspicious spots. Then the waiting and procedures begin, yet again. Had I been able to see this future, even without having seen all the women I work with go through much worse, I would have also considered prophylactic mastectomy at the time of my diagnosis.

During my initial diagnosis, I received a false negative mammogram when I had a large invasive tumor that had already been seen on sonography, and since then, multiple false negatives. MRI diagnostics give me the same false negatives. Since I know just how erroneous our diagnostics can be, I pray for the day we are focused on creating more accurate, less traumatic diagnostic methods. Until this happens more, not less women will be considering this drastic measure. In other words, if you want to ‘save the boobies’, you have to invest in something more accurate and less pressing than mammograms.

I have to be honest. The thought of never again having to get a mammogram, and at the same time decreasing my risks significantly, is pretty tempting. The thought of a future with less fear and to get a fairly natural looking, less psychologically traumatizing physique –I can definitely see the lure. This is a preventative measure, mammograms are certainly not.

I’ve changed. When I was first diagnosed as a healthy woman and a holistic practitioner, I was the woman who couldn’t even grasp this perspective.  Making pre-emptive strikes against my own body–unheard of!  But alas, that woman was someone who hadn’t seen what I have seen other women endure these past 8 years, hadn’t gone through that ‘gauntlet’ so often.  Angelina Jolie is a brave person who made a heart wrenching decision using the best information available to her at the time. Bless her and all the others like her and their circumstances.

13 Responses

  1. This was so well thought out and presented, Luana. Your perspective is unique and one that the world needs to hear. One biopsy has been more than enough for me. I couldn’t imagine repeatedly experiencing these procedures. Angelina’s choice is her own but I think it was brave and I salute her for getting the dialogue going by sharing her journey. The work you are doing blesses so many Luana. Keep up the great worl!

    • Thank you so much Lisha!! I was just thinking of calling you guys today and saying hello. Hoping you and yours are so well and happy. I think people have a hard time really putting themselves in other people’s shoes. But I know that anyone who has been through multiple testing can get an inkling. Watching someone die of cancer is a major wake up call, and so is just having a scare.

  2. Luanna,
    How perfectly you captured the emotions… Well done!
    xoxo

  3. Beautifullly said. Thank you for putting all this in a very reasonable context. It makes a lot of sense…..I have had bc twice. I know anxiety…..What are your thoughts on thermography? Curious….

    • I think that if some money was invested in thermography and really getting them performed and read by very qualified experts, we could really have a better diagnostic tool. So much has already been invested in Mammography the status quo seems hesitant to invest in other options. We really need to make some strides with diagnostics.

  4. You write and express yourself so well, Luana. Thanks for sharing. XOXO

  5. I am coping with a second recurrence of ovarian cancer after a 13 year remission. My diagnosis was grim yet I was one of the lucky ones with the illusion that I would never see it again. I also was diagnosed in 2007 with triple negative breast cancer. I have endured multiple, surgeries, double mastectomy, 23 chemotherapies and let us talk about fear and anxiety. My sister is a two time survivor of breast cancer being diagnosed the first time at the age of 29. This is our history…no one else in the family has a diagnosis of either breast or ovarian cancer. Last year I tested positive for a BRACA 1 mutation-it is called a deletion of exons 21-24. This has been explained to me as missing pages in a set of documents that instruct the cells to do the right thing. Ten years ago my sister and I sought counseling at Memorial Sloan Kettering Cancer Center in NY. We decided at that time to wait for testing as it had not really been perfected and quite frankly, my belief was that the environmental factors many of us had been exposed to were also a culprit. Although we could not identify prior history, many of my female relatives had early hysterectomies or lived in Europe and died during WWII.. I consider myself a thrivor, hoping to beat the odds once again. But ask me if I agree with Ms. Jolie…absolutely. She put it out there so that the media sickies would have less to chomp on and speculate about. She will reduce fear, anxiety, and constant monitoring between, scans, mammographies, MRI’s, etc. The statistics are sobering for those of us with this marker. Pair the genetic predisposition with the conditions of our environment that are known carcinogens and we have a recipe for disaster. Let’s focus on prevention but let people make their own decisions based on personal family history.

  6. Well said! Thank you for writing this piece.

    Happy Friday to you-

  7. Hi Luane. How are you? I thought your article was very interesting and well done and I agree that Angelina Jolie is very courageous, especially sharing her story so openly. With the pros and cons of elective surgery I have not heard mention the fact that reconstructed breasts have no feelings or sensations. Or do they with nipple conservation?
    All the best
    Naomi

    • Naomi,

      No sensation is pretty much gone because they hollow out the nipple and disconnect the nerves. Thank you for bringing that up, it is VERY important. Thanks for sharing, liking commenting! Keep in touch.

      • Luana– Great article! Well-said! Since the news broke out, I had been arguing on FB with people from Eastern Europe where breast cancer prevention is unheard of and even standard cancer care is almost non-existent, where even doctors wrongly think that Jolie should have concentrated on the 13% of not getting cancer as opposed to concentrating on the 87% of being diagnosed with it. OMG! I have broken my nails typing my angry responses, but I don’t mind, because I agree with Jolie’s decision. I would have done the same. It is because I had been though surgeries and treatments myself and let’s not forget about those who are no longer here physically only in spirit to support her brave decision.

        Sending love to you, Luana. I wish I wasn’t working on weekends,but I still do, otherwise, I would some by to volunteer at the center. XO

  8. Luana,

    Here is a thread on Facebook with a discussion. Your article is referenced in one of the comments.

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