Need to be Your own advocate

by Regena Huffman, Survivor

I was diagnosed with stage 2 IBC (inflammatory breast cancer) back in December of 2015. After chemo, surgery, and radiation, I was 6 months away from my 5-year milestone when I discovered the cancer had metastasized to my bone in 3 places. I am currently on oral chemo and appear to be responding favorably.

The newest cancer was discovered during an MRI that I had to advocate strongly to have... I would like to share with survivors the importance of being your own advocate and asking what tests are available to you for early diagnosis!

Here is my story - When I went in for my regular annual checkup at the breast surgeon's office last May, I shared how someone I knew had a recurrence of cancer on the side they had already had a mastectomy on. I asked how we would know if that was my situation or not given that I still got an annual mammogram, but I could only have one side of my body checked. How would we know if all was good on the reconstructed side? My doctor said that for those of us who have only one breast removed during treatment, the medical field is starting to see the value in doing an annual mammogram, but then following it up with an MRI 6 months later so they can identify anything that might be occurring on the reconstructed side. He told me that most insurance companies fight doing this because of the cost of the MRI, and I asked him to submit a request to move forward with the MRI. He said it might take a time or two to get approval, but I told him to keep requesting until we were approved, which he did.

When I went to his office to review the results of the MRI, his exact words to me were "Your case is exactly the reason why I think it is so important for us to do these MRI's for survivors... we had something show up in your results that we need to investigate further.”

A PET scan was then ordered, and that scan showed that I now had cancer in my bones in 3 areas of my body, 2 cervical joints in my neck, one rib, and a spot on my pelvis. If I had not insisted on that MRI, I might not know about the recurrence yet! I am a firm believer that we need to not be afraid of what the doctors or insurance companies might think of us, we are fighting for our lives here!!! I am now on oral chemotherapy and had 5 radiation treatments to my neck back in July. My most recent PET scan (which my oncologist had to submit for three months in a row before we got approval!) showed that the affected areas are responding and for that I am grateful!

Thanks so much for all the Beyond Pink TEAM does for those of us who are living with this daily, and for the time spent educating and encouraging those of us who live with breast cancer.


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