I was reading Marie ‘s Weekly Round Up on her blog “Journeying Beyond Breast Cancer” as she quoted  Eileen’s blog,  where she writes, “If there’s anything I’ve learned in my process that will help another, I owe it to myself and others to share it on my blog.” There was an article written about me in the ASCO Post’s Patient’s Corner that I have been hesitant to tell people about because I felt a little exposed. Eileen and Marie helped me realize that I should share this article with everyone. The skills of the interviewer and writer, Jo Cavallo, really impressed me. I did the story with her because I wanted oncologists to benefit from my experience.

Ironically when all of social media was beginning to explode on the internet, I was afraid to use my real name because so many aspects of breast cancer are very personal.  Thanks to a dear friend that I met at a National Breast Cancer Coalition Advocacy Meeting in DC, I started my Twitter account as well as Facebook and my blog, and I ended up putting my name out there. I am grateful to her and many others for finally helping me to get this process started last May.

There are so many other bloggers who continue to inspire, empower and uplift me through their blogs. I am also thrilled by all the friendships I have made through social media. Thank you to all of you who give me so much encouragement with your feedback. Although the story below is about my breast cancer case, there are so many cases and people with experiences “Weaving through Breast Cancerland”. You can go directly to The Asco Post Patient’s Corner, My Life Will Never Be Normal, to read the story or read it below.

 

My Life Will Never Be Normal

I thought I could go through breast cancer treatment, and afterward my life would return to the way it was before. That’s not what happened.

By Susan Zager, as told to Jo Cavallo
March 15, 2013, Volume 4, Issue 5

Despite my concerns, I’m happy to be alive and I try to live life to the fullest. I have become a patient advocate for breast cancer survivors and find great satisfaction in helping others become better educated about their disease and more proactive in their care.

—Susan Zager

After being diagnosed with stage II invasive ductal carcinoma in my right breast in 2004, I did an Internet search to learn more about my treatment options so I could be prepared when I met with my oncologist to discuss my treatment plan. I was especially interested in therapies that would be effective but allow me to salvage my hair. Despite my efforts, however, in addition to a lumpectomy, my oncologist was recommending the standard course of therapy for my type of cancer, including four cycles of a high-dose combination of doxorubicin and cyclophosphamide, followed by four cycles of paclitaxel, plus 35 days of radiation therapy over 7 weeks.

With this regimen, I knew my hair didn’t have a chance. What I didn’t expect to see was all my toenails floating to the top of the water one night while I was taking a bath. Although I didn’t feel any pain, the sight of my toes without nails and my head without hair made me truly sad.

I know that the point of all this treatment was to make me well, but I couldn’t help but feel that one by one, I was losing parts of my life that made me who I am. The cumulative side effects from my treatment, including fatigue, nonstop vomiting, weight loss, and “chemobrain” were overwhelming. And because I was so sick and weak from all the chemotherapy, I couldn’t take adjuvant tamoxifen therapy.

Problems of Reconstructive Surgery

I have wondered if skipping tamoxifen may have contributed to a local breast cancer recurrence a year-and-a-half later, but I have friends who are ER-positive and have had distant metastatic recurrences. I’ll never know for sure if tamoxifen would have made a difference, but the ensuing physical changes I’ve experienced since my recurrence guarantees that my body and my life will never be the same.

The new cancerous mass was small and confined to my right breast. I decided to have a bilateral mastectomy to avoid the possibility that I might develop cancer in my left breast as well. It had only been 15 months since I ended treatment, and I believed my body was determined to have more breast cancer. The bilateral mastectomy sparing the left nipple made the most sense with my set of circumstances. I have no regrets about that decision.

Since I had had radiation therapy and subsequent skin damage, there were problems using implants for my breast reconstruction. After several failed reconstruction attempts including a lateral flap, I found a fantastic plastic surgeon who was able to do various things surgically and give me a beautiful aesthetic result. Nevertheless, the reconstructed breasts are hard to the touch and do not feel natural.

Women contemplating a contralateral prophylactic mastectomy need to be aware that no matter how skilled the plastic surgeon, reconstructed breasts are not the same as natural breasts. They also need to know the complications that can arise as a result of radiation-related skin damage and be given advice on which type of reconstruction surgery has the best chance of success. I’m disappointed because my oncology surgeon never told me of the potential complications of using implants to reconstruct my breasts, even though I had asked if the type of surgery I chose made a difference.

Living My Best Life 

The cumulative effects from all the drugs and surgeries over the past 8 years have taken a toll. And a hip break due to osteoporosis, a late effect from my treatment, has added another scar to my already tattered body. However, I maintain a regular exercise routine and have worked hard to restore my strength. I am so happy that the chemobrain faded away, and I feel that my mind and memory are in top form again.

More than the physical effects of having breast cancer, I worry about the statistic showing that 30% of early-stage breast cancer survivors eventually develop distant recurrence and stage IV disease, especially because my best friend—who had chemotherapy for primary breast cancer at the same time as me—was in the 30% and died of metastatic breast cancer. I have many friends with metastatic breast cancer, and I am determined that they be helped.

While I am thrilled that I currently have no evidence of disease, I am concerned that those with metastatic breast cancer have sometimes been lost in the sea of pink survivors. I was prescribed tamoxifen after my cancer recurred 5 years ago (and have tolerated the drug), but I live with the knowledge that my cancer could eventually become metastatic.

Despite my concerns, I’m happy to be alive and I try to live life to the fullest. I have become a patient advocate for breast cancer survivors and find great satisfaction in helping others become better educated about their disease and more proactive in their care. I have been to two major Breast Cancer Symposiums and the San Antonio Breast Cancer Symposium, among other professional meetings. I am delighted that the oncology community is interested in patient advocates’ insights, recognizing how educated patient advocates can be and how much we have to offer.

While I keep vigilant for any new signs of health problems, I never forget to take pleasure in the ordinariness of every day. ■

Susan Zager is the founder of Advocates for Breast Cancer and lives in Los Angeles, California.

10 thoughts on “My Life will Never Be Normal

  1. Susan,
    You’ve been through so much and the title of your post says a lot. Thank you so much for sharing your story, Susan. Thank you for all your advocacy work as well. It means a great deal to many. Enjoy those ordinary days!

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    1. Nancy, I really try to enjoy those ordinary days. I do find sometimes that there is so much to be done and I have to stop myself from getting so engulfed in the details of trying to keep up with all of the excellent social media around me. I know you have been through a great deal too and it really means a lot to me that you took the time to comment on a post that I was hesitant to write about. Thank you for all of the advocacy work that you do as well!

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    1. Thank you Marie for encouraging me through your blog to put this story on my blog. I just had the chance to help someone who has to have a mastectomy on a radiated breast. I am so happy that I am able to help her and I hope my story will continue to help others.

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    1. Marie, I just love your weekly round up. There’s always something that I missed and I really enjoy going back through the blogs. I am so touched that you have included me among so many other fantastic bloggers. I find it so incredible the way that you tie posts together to make us all part of a community that supports and encourages each other. Thank you. xoxoxo

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  2. Susan, thank you for this heartfelt, poignant, and authentic post and for sharing it with your readers. This post has helped me because it’s made me feel less alone, as do all my friendships in the virtual-real world. I suffer from osteopenia and still have chemobrain. I’m sorry for all you have endured. Cancer and its treatment are hell. Thank you for your candor.

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    1. Beth, thank you for taking the time to comment and saying that I helped you. In a recent #BCSM (Breast Cancer Social Media) Community meeting we discussed that just helping one person helps us help ourselves knowing we made a difference. Treatment for this disease has lasting side effects. I had my last surgery in September 2011 and I finally got to go off of tamoxifen a year ago. That drug is really nasty stuff. Our bodies don’t like like being deprived of estrogen and non-stop overheating. Plus I am so angry that 30% of early stage patients will end up with metastatic breast cancer and these are not statistics to me – these are my friends including some extremely close friends. They have treatment options and depending upon pathology and different drug combinations their bodies have to endure side effects while they hope the treatment works for a long time as they go through a line of drugs until one’s options runs out. It’s a very cruel disease and we need to find a way to stop early stage and metastatic disease once and for all. We are all in this together.

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    1. Eileen, thank you for being the motivation for me to put this post on my blog. You are giving so much to the cancer community and I really appreciate how open you have been on your blog. xoxoxo

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