Advanced Breast Cancer Survivor

Never Give Up

After thinking she may have beaten Stage IIA triple negative breast cancer, Sandra Spivey didn’t expect to be diagnosed with Stage IV breast cancer. Despite the fact that the cancer has spread to her bones, she continues to try new and different treatments, including a clinical trial. As a 20-year survivor, she shares her experiences with others diagnosed with breast cancer. She has become a breast cancer advocate and serves on scientific review panels to provide a patient’s perspective to aid in research.

 

In 1995, an inverted nipple led to my Stage IIA triple negative breast cancer diagnosis. My mother had been diagnosed with breast cancer 15 years earlier and she had come through fine, so I expected the same result. I had surgery, radiation therapy and reconstruction, and I was fine. Three years later, I was sitting at work when I used my left leg to push off toward a cabinet, and I heard a popping sound. I thought I may have dislocated my leg, but it never improved and hurt all the time. My oncologist did new scans and found that the breast cancer had returned and was in my hip. I was diagnosed with Stage IV breast cancer.

I participated in a clinical trial that was testing stem cell transplantation as an option for Stage IV breast cancer. I spent three weeks in the hospital to collect my stem cells, take high-dose chemotherapy and receive my stem cells back. It was a difficult procedure, and I took three to four months to recover. The trial was published and showed that stem cell transplantation was not better than chemotherapy and, therefore, was not considered to be a standard treatment for metastatic breast cancer.

My next treatment included chemotherapy and, in between chemo regimens, I took all of the available hormone treatments twice. The doctors would change my treatments because after about three to four years, the cancer cells would change and forget what they were resistant to. Cancer is smart and the treatments have to outsmart it. Cancer is not one type of cell, it’s multiple cells. I think of a tumor as a bowl of fruit salad. You take one treatment that gets rid of all of the grapes in the salad. Then you try another treatment that targets the melons. No one treatment kills the whole thing. It’s a process.

Overall, I’ve had more than 200 bags of chemotherapy in my body since 1998. When I was first diagnosed, I cried in my bedroom or in the shower where my 13-year-old daughter couldn’t see me. The shower is one of the best places to cry. I tell others that it’s OK to cry. It releases tension. You’ve got to take care of yourself first.

Throughout all of my treatments, I took “mini chemotherapy vacations” where my doctor allowed me to temporarily stop treatment so that I could travel for my job and for pleasure. I called these my cancer-free days, and I would pretend that I didn’t have cancer. I think taking breaks – both mentally and physically – from the treatments to do the things I wanted helped me to keep going long term with my treatments.

Later, I had a flare-up in my sternum, but it felt like I was having a heart attack. I went on another chemotherapy regimen to knock it back. When I had too much bone pain, the doctor suggested radiation therapy to ease my pain. After three treatments, I felt dramatically better. But since the radiation weakened my bones, I am not able to do that treatment again.

While going through treatment, I became very interested in the science of breast cancer because I didn’t want other women to have to go through what I did. I became involved with my local Y-Me chapter to help other women diagnosed with breast cancer. I also began attending National Breast Cancer Coalition conferences and graduated from Project LEAD, which trains advocates to participate in peer review panels and review grant applications for research funding side-by-side with scientists. I became a helpline match counselor for Living Beyond Breast Cancer, After Breast Cancer Diagnosis and SHARE.

The number one thing I tell other Stage IV breast cancer patients is to not go out and run up their credit cards. You may live and then you’ll be stuck having to pay all of the money back. That usually gets a hearty laugh! I also encourage people not to be afraid to seek help if they develop depression. In January 2017, I was feeling even worse after my chemo treatments. I felt there was no point in going on, so I sought help. Depression is nothing to be ashamed of. Get help. Don’t let it take you over.

Some people are dealing with a Stage IV diagnosis as if it were a chronic disease, even though there is no cure. Don’t let a Stage IV diagnosis deter you from seeking treatment. I believe there will be new treatments available when I need them. Consider a clinical trial. Medical research is advancing, and new medications are being tested. So, don’t give up. You will never “lose your battle” to this disease. Cancer is the loser, not you.

 

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