Winning the Battle against BRCA1

This entry was submitted by Marilyn Robinson of Berkeley, CA:

Who said, “I am glad I had cancer, it made me a better person?”  Well, that is true; however, how much better and wiser can I be? I have just been diagnosed with breast cancer for a third time! The front-line battle to escape the enemy tells the story:

In 1993 at the age of 47, I had a routine mammogram, and I was diagnosed with an estrogen-negative ductal cell carcinoma. I had many heart-wrenching issues to face. I was confronted with my own mortality. I underwent ten months of FAC chemotherapy after a mastectomy and tram flap reconstruction. [Dr. Mark Shusterman, my plastic surgeon from Houston, Texas is a skilled artist and wonderful physician]. You would think that would be enough for one person to endure..however, there is more to my story.

I was diagnosed 1 year after my husband was diagnosed with renal cell cancer. We were both in treatment at the same time. Unfortunately, my husband was not a survivor, and passed away one month after my last chemotherapy treatment. Although I suffered both emotional and physical pain during that time, the wonderful memories of having a loving partner in battle gave me great strength. We were both angry, but our mutual anger turned to peace. We spent more and more time at the beach looking at sunrises and sunsets, listening to the waves crashing on the shore, hearing the sound of seagulls, focusing on the preciousness of life’s moments.

I survived 8 years cancer-free, enjoying my creative talents, helping cancer patients look fashionable and feel better about themselves. Then, you guessed it..I went in for a routine mammogram and was diagnosed with in situ ductal cell carcinoma to the healthy breast. The same fears surfaced as when I was first diagnosed …a cancer-free existence with a bright future now overshadowed by a dark cloud from the past. My decision was to have a lumpectomy with six weeks of radiation..I thought that would end my battles. I was widowed and scarred but remained hopeful that one day there would be a cure.

In 2008, I found out about the BRCA genetic test, and consulted with a counselor to explore my family history and risk for other cancers. I could not trace anyone on my mother’s side or father’s side who had breast cancer. My test results came back positive for BRCA1, hereditary cancer..which put me at high risk for breast cancer, ovarian cancer and melanoma. I immediately took action and had my ovaries removed, and also saw a dermatologist for a baseline skin check. Because I already had a lumpectomy and radiation, I decided to ignore the possibility of having another bout with breast cancer, and instead opted to have close medical management of the radiated breast.

After rebuilding my life and living by the adage that time heals all wounds, once again, I went in for my yearly mammogram, which for those with a history of cancer become a living hell. January 2010, a one-centimeter cancer lump was found on the radiated breast. The carcinoma is a grade three, stage one, triple-negative ductal cell. Not a good report to say the least. On March 5th, I underwent a second mastectomy, and next week I face my first of four chemotherapy treatments of Taxotere/Cytoxen. So it seems I’m back on the frontline fighting the war against breast cancer. At least I learned from my past experiences, that early detection is crucial.

If I had known I was a BRCA1 carrier in 1993, I would have had a double mastectomy and ovaries removed and life would have been enjoyed with less pain. I thought life was pretty darn good before I was diagnosed, and have faith that it will be good again. There are new programs available, and genetic testing that were not available in 1993. I urge those reading my story to get tested and learn about prevention. I have “been there, and done that.” Now I am winning the battle–and maybe I am cured! I will let you know next year..after my routine physical. And on the positive side, I am through with yearly mammograms!

 

Marilyn Robinson

Do you share Marilyn’s emotions? Have you been tested for the BRCA genes? Share your thoughts here or on our Facebook page.

8 thoughts on “Winning the Battle against BRCA1

  1. Marilyn, you are probably the bravest woman I have ever known. Going through what you did and coming out a “winner” is the best anyone could have expected, Best of luck and good health to you for many years to come. I love you for your strength and attitude. Di

  2. Thank you Marilyn for standing up to cancer and having the courage to use your voice and story to help all women get tested! Your spirit is amazing, especially during the AC cycle!

  3. Pingback: Around South County: An Edgewater woman’s 12-year battle with stage IV breast cancer | Uncategorized | Informative Articles about Cancer!

  4. Your story resonates with me — I was diagnosed at age 32 with early-stage breast cancer, had a second primary tumor in 2007, at which time I found out I have the BRCA1 mutation. I had a single mastectomy on the left side in 2008, as a prophylactic to prevent cancer from coming back in that (unradiated) breast.

    We weren’t able to trace breast cancer back in my family either, except that my father is alive and was also tested, and he and one of his brothers, and one of the brother’s daughters, are also positive. Luckily no one else in the immediate family is positive for the gene.

    Unfortunately my story is a bit different in that I now I stage IV triple-negative cancer. I also think if I had known in 2002 that I had the gene mutation I would have had a double mastectomy. But now it’s a moot point. I’m trying to stay positive and enjoy the time I have left, but sometimes it isn’t easy. I try not to look back and only ahead, and I know that I have helped others to get tested, including my cousin who had a double mastectomy and oophorectomy after she found out she has the BRCA1 gene mutatation, and her friend who found a stage 0 breast cancer after hearing our stories.

    Best to you.

    • Hi Lori,
      Thank you so much for sharing your story..I think it is very important to urge others to get tested..that is an important mission we seem to be carrying out so others won’t have to face the unknown of living with BC.
      I wish you the best …I am sure you are touching many lives..
      Warm Regards,
      Marilyn

  5. Hi Marilyn,

    Reading your story and what you have been through made me understand how fortunate I was to have found out early enough that I was a BRCA 1 carrier. This came about as both my mother and younger sister died of ovarian cancer shortly before I was diagnosed with breast cancer.

    After my lumpectomy I started doing some research online around triple negative breast cancer. That’s when I was led to the idea of a possible mutation. I’m not sure why my doctor’s didn’t suggest this as a possibility but I’m sure glad I found out. After waiting for a year and a half for my test results, I wasn’t too surprised to find out I was positive. I’m not the type to want to do the “wait and watch” scenario so I went ahead and had a double mastectomy and complete hysterectomy at the same time.

    Now I’ve just heard from my 30 year old daughter that she is also a carrier. We will be seeing the genetic counselor together. My daughter has just recently married and they are planning on having children soon. So now my research is focused on how to stop this generational mutation for the next generation.

    On the good side, at least we know where we stand. Enjoy every moment you have. None of us know when we will be leaving.
    Barb

  6. Marilyn,

    You are “Living Strong”! You and others are in my prayers to Our Sovereign Lord Jehovah. He promises in the Bible, Rev. 21:4-6, that in his new Kingdom there will be no more pain, death, etc. I truly have faith in Jehovah. In the new kingdom, Matthew 6:9, some call it “The Lord’s Prayer”, we pray for this kingdom and all the wonderful thing that we will enjoy. One is moving back to perfection with no more sickness and death. May these scriptures bring you much comfort as it has me. Meanwhile, keep up the fight. I was diagnosed with Inflammatory Breast Cancer stage IIIb, Triple Negative in my left breast and lymph nodes n December 2008. My wonderful team of doctor’s and I fought it will all we had. I had six cylces of chemo, double mastectomy, over thiry sessions of radiation April 14th my cancer metastatized. I’m on Xeloda, waiting for a Parp Clinical Trial. I did have the BRAC test. Waiting for results. My strategy moving forward, will be to use all resources to increase my overall survival rate. Meanwhile, I’m “Living Strong”!

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