Celebrities, a Gene, and a Pink Tutu

On Saturday, October 17th, Mark and I attended a Metastatic Breast Cancer Forum at Dana Farber Cancer Institute in Boston. It was an educational event, and Mark and I learned quite a lot in regards to treatments and advocacy.

I have been living with metastatic breast cancer for two years now, and it was nice to be in the company of others who are experiencing, and living day to day with the same disease. We are considered the “invisible” patients, not the “survivors.”

Every October thoughts turn to pink in honor of Breast Cancer Awareness Month. There are cancer walks and pink products galore, during this month, that promise dollars raised will go to breast cancer reasearch. Some do, but some go to awareness. Believe me, WE ARE ALL AWARE!  Why is it that other cancers and diseases focus their energies on a cure, while breast cancer focuses on awareness? What we need is more RESEARCH to find a cure.

The cancer walks during October, and other months, show happy folks dressed from head to toe in pink. These are the breast cancer survivors, their friends and family. They are all so happy to be “cured.” I am happy for them, I really am, but I know better…all of us who have metastatic breast cancer know better. Pink ribbons and tutus do not represent us, we are the invisible patients. 

We, the invisible patients, are not represented at these walks. Why ruin a perfectly happy event with the awful truth….woman and men are dying from metastatic breast cancer every day. There is NOTHING to be happy about when someone has metastatic breast cancer. 

Here are some facts about Metastatic Breast Cancer:

  • No one dies from breast cancer that remains in the breast, considered early stage breast cancer.
  • Metastasis occurs when cancerous cells travel to a vital organ usually the bones, brain, liver or lungs.
  • Treatment is lifelong.
  • 155,000 Americans are currently living with MBC.
  • MBC accounts for approximately 40,000 deaths annually.
  • More than 90% of all research dollars raised goes to early stage breast cancer.
  • Less than 10% of all research dollars goes to metastatic breast cancer research. 
  • Early detection DOES NOT GUARANTEE A CURE. 

Unfortunately, many people believe that if the cancer is caught early, they will be cured and will live a long happy life. I wish this was true, but metastatic breast cancer can occur 5, 10 or 15 years after a person’s original diagnosis and successful treatment. Many people also believe that having a bilateral mastectomy will prevent a recurrence. This is not true. Woman are sometimes removing their breast(s) for a false sense of security. 

On October 18, 2015, the Parade magazine, which is included with The Boston Globe, featured an article on Sandra Lee. You might know her from the Food Network. She is also the author of many cookbooks. Sandra Lee was diagnosed with breast cancer in situ. It is an early stage non-invasive cancer because it has not spread beyond the milk ducts. In situ means, in it’s original place. It is not life threatening, but can increase the risk of developing an invasive breast cancer later on.

Sandra Lee seems like a very nice person, however, after reading the Parade article, Sandra Lee is misinformed about breast cancer. She, and her oncologist decided to treat her situation aggressively, and she had a bilateral mastectomy.  She said she did not want to spend her life thinking if the cancer is going to come back.  Sandra Lee said, “You have to take a leap and do what you have to do to get rid of it. I truly believe and so did my surgeon in being aggressive with treatment and care so I’ll be around for 10 years, 20 years and hopefully more.” What? Mastectomies DO NOT prevent recurrence! The truth is, even after removing your breasts, you can still get breast cancer.

After my first diagnosis, which was stage IIIC invasive ductile breast cancer, I had genetic testing done due to my age and ethnicity. Without having a family history of breast cancer, I tested positive for an abnormal BRCA2 gene. I was shocked! Having this gene mutation raises your risk for breast and ovarian cancers, about 3 to 7 times greater than that of someone who does not have the mutation. What to do now? What would my course of treatment be? 

My oncologist and I decided my treatments would consist of a lumpectomy, right axillary dissection (lymph node removal), chemotherapy, radiation, hormone therapy, and a bilateral salpingo oopherectomy (removal of tubes and ovaries). My breast would be saved. My oncologist explained that my life expectancy would be the same whether I had a bilateral mastectomy, or the treatments I would receive. 

Angelina Jolie, the actress, brought awareness to the brca gene mutation, but her prophylactic surgeries (she did not have cancer), are not a one size fits all. Having the brca abnormality does not mean you must remove your breasts like Angelina, although many do.  Most oncologists do recommend the removal of your tubes and ovaries, especially if you are done having children, to reduce your risk of ovarian and breast cancers.

Sometimes is takes a celebrity to bring to light an awful disease, but we must remember, we are all different, and what works for the celebrity, may not work for you. I absolutely respect a woman’s decision, along with guidance from her physician, on her course of treatment, whatever it might be. We need to feel comfortable with the decisions we choose. 

At the beginning of the Metastatic Breast Cancer Forum, we were asked to stand if we had metastatic breast cancer. We were then asked to stay standing if we had been living with MBC for one to two years, three to five years, etc. it was nice to see some woman and men still standing after 20 years. It gives us hope, and hope for the future keeps us going. 

An update:

Last Tuesday was scan day for me. Mark and I met with my oncologist on Thursday to discuss the different scan results. We received great news! The lesions on my liver have shrunk, the swollen lymph nodes between my lungs have shrunk, and my bones are looking better. It’s been a year since receiving good news….we are thrilled! 

  
Photo by Dee Lewis photography

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5 thoughts on “Celebrities, a Gene, and a Pink Tutu

  1. That is great news!!!!!!! Fabulous.
    I had all of your treatments plus a bilateral mastectomy–13 years later diagnosed Stage 4. I did everything possible and it still recurred. There are no guarantees in this life and it is very hard to hear celebrities talk about how they are “cured.” We must educate whenever we can, however we can and without rancor. Again, congratulations!!!!

    Liked by 1 person

  2. I am so happy to read about your great test results! As a 3 year breast cancer “survivor”, I totally agree with your assessment of the situation. Enough of the pink ribbons and pink everything. Lets spend this money on greatly needed research!

    Liked by 1 person

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