I am 30 years old and was diagnosed with breast cancer, specifically invasive ductal carcinoma. Before my diagnosis, I didn't even know what that meant. Now I have been forced into a reality where I not only know what it means but my doctors appointments and daily thoughts are filled with other previously unfamiliar words like neoadjuvant therapy, metastases, HER2 and triple negative.

I started this blog in hopes that some of the information I share may be helpful to other young women in a similar situation. Rather than posting my day to day experiences, feelings and progress, I plan to share some of the things I have learned along the way. Being dealt this hand in life at 30 years old brings with it some unique issues and questions. Will I ever have kids? How will this affect my relationships with my husband and friends? What is my long term prognosis?

Through this site you may find that my way of dealing with things is a bit different. I want to be educated about my disease and take an active role in my treatment and recovery. I want to understand every part of my pathology report, what it means, and feel confident that my doctors are recommending the best course of action. At each stage in my journey, I have experienced challenges with finding answers to my questions and ensuring that the medical professionals treating me really understand who I am and why my way of dealing with this disease may be unlike other women. My hope is that people will be able to relate to my experiences, learn from them and find some comfort that they are not alone.

Tuesday, 1 March 2016

Is PCR Everything?

When reading through articles, especially about Triple Negative breast cancer, everyone places so much emphasis on a PCR (pathologic complete response). When you have neo-adjuvant chemotherapy, one of the benefits is that the doctor can monitor your response by measuring the tumor (either by feeling it or with an ultrasound). The definition of a pathologic complete response can differ depending on the study being done, which presents an issue in terms of finding a consistent way to classify it. Most studies define it as the absence of residual invasive disease in the breast and in the axillary lymph nodes at the completion of the neoadjuvant treatment. This definition allows for in situ carcinoma, also known as DCIS, to still be present.

Based on the information I have gathered, achieving a PCR is more common in Triple Negative breast cancer because this type is more sensitive to chemo. Studies state that anywhere from 20-30% of women who's cancers lack estrogen, progesterone and HER2 receptors will achieve a PCR. Surely you have read articles like this one stating that patients who achieve a pathologic complete response with neoadjuvant therapy tend to have a very good prognosis. These women are at much lower risk for subsequent distant disease recurrence.

This is all fantastic news for those women that achieve a PCR but what about the other 70-80% of us? Does the fact that we had residual disease mean that we are doomed? Hearing about PCR over and over again, knowing that I did not have a complete response, does not make me feel good and surely there are others that feel the same way. Perhaps you have asked your Oncologist the same questions I have - is there anything else I can do? Do I need more chemo?

There are some women whose doctors will advise that more chemo is recommended but I am not one of them. I have seen 2 different Oncologists now who both said there is no concrete research showing that additional chemo has a long term benefit in terms of overall survival. When weighing the benefits versus potential toxicity, in my case, it is not recommended. So what do I do now? Unfortunately the medical response is "we wait and see". Frankly, I think that is bullshit and the wait and see approach doesn't work for me. I don't want to get back to living my life and forgetting this whole ordeal ever happened. What kind of advice is that anyway?

More to come in a later post about additional steps I am taking to prevent a recurrence. One article that I did find helpful in explaining the prognostic significance of residual disease can be found here: http://jco.ascopubs.org/content/25/28/4414.full. Using the residual cancer burden calculator, it shows that I fall into RCB-I. Maybe I am an underachiever and did not attain the almighty PCR but this does give me some hope that there is light at the end of the tunnel.

No comments:

Post a Comment