Experiencing Invalidation After a Stage 0 Breast Cancer Diagnosis

A women describes how the difficulties of stage 0 breast cancer is still misunderstood by many.

I read an article this month highlighting stage 0 ductal carcinoma in situ (DCIS) and to say the least, I was very disappointed with the lack of support offered to women diagnosed at stage 0 who are not previvors. I am all for supporting anyone at any stage of prevention or diagnosis, but the article lacked equal representation and support. In my own experience the article discounted the difference women face when having a biopsy performed and how those such as myself are told, “You have a positive biopsy for cancer and need to start thinking about treatment options in a timely manner,” as in meaning, do not wait. I was personally diagnosed with DCIS, stage 0 going on stage 1 less than a year from my last mammogram at age 44. The article I read this month discounted and invalidated the emotional toll women face when having a diagnosis of cancer, even at stage 0 versus being a previvor who may have more time in which to make a treatment option. And unlike a previvor diagnosis alone, women or men with a diagnosis of DCIS are made to choose lumpectomy or mastectomy with treatments such as radiation or potentially chemotherapy to follow.

In my own situation, my treatment decisions were weighed carefully due to fear of recurrence and continued needs to monitor the diagnosis. With a lumpectomy, I would have faced radiation and potential chemotherapy along with invasive checkups every three to six months for the first year or two and maybe longer. I also took into consideration any burns I might have experienced due to radiation verses with a double mastectomy. My thinking was, I spared my skin and was able to support a nipple and areola sparing surgery, which might have been compromised from radiation associated with a lumpectomy due to the location of suspicious cells found in my right breast. Gratefully, I choose a double nipple and areola sparing mastectomy. I say gratefully as a biopsy of the tissue in both breasts were positive for cancer in one and showed signs of tissue changes consistent with early signs of cancer which had been missed in the mammogram in the other breast. While I appreciate an educational group attempting to shed light on stage 0, I personally found they failed to address women who do not necessarily carry a genetic predisposition and who are not considered a stage 0 previvor.

My article is to say that there is support, and if you feel invalided by what some read as a downplay to your diagnosis, please reach out for support with organizations who you feel give full and equal representation to stage 0, as it is different than a previvor diagnosis alone. And while I send love and support to everyone, the differences and needs in stage 0 are not one size fits all. Find your best treatment option and know that there are emotional, mental and physical challenges to the diagnosis which are not to go unsupported unmentioned and unexplored. With an initial stage 0 diagnosis, I like many other women faced having lymph nodes removed due to the sentential lymph node test. In an additional experience with a stage 0 non-previvor DCIS diagnosis, I had lymph nodes removed and then faced complications following removal. While the chances of lymphedema are lowered when fewer lymph nodes are taken, an individual can still develop lymphedema after any lymph node removal. My symptoms personally are slight compared to others but are present. Exercise and stretching in my case protects against constant symptoms and acts as preventative maintenance.

To my stage 0 peers: feel validated, find support and fight on. May we not have to learn what is it like to be diagnosed with cancer again in life and may we find ways to help manage lifelong survivorship for ourselves while finding a sense of gratitude for early detection. As a goal for our metastatic breast cancer peers who are still needing support through further research and treatment options, may they also get to experience survivorship equal to ourselves someday soon.

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