#BeyondTheBreast: Metastatic Breast Cancer in the Bones

March 23, 2018

Metastatic breast cancer, also called stage IV breast cancer, is breast cancer that spread beyond the breasts and nearby lymph nodes to other parts of the body. Metastatic breast cancer affects the bodies and emotions of those living with it in unique ways.

For LBBC’s spring #BeyondTheBreast campaign, on March 26, members of LBBC’s fall 2017 class of Hear My Voice Outreach volunteers wrote about their experiences with metastatic breast cancer and how the disease has affected them.

Here, Kim Hernandez, 47, of Knightstown, Indiana, writes about how bone metastases have affected her life. Read her story and learn how you can get involved with #BeyondTheBreast.

When I first learned I had stage IV breast cancer, I can’t tell you what I was thinking because at that time it really didn't matter what was said. I went straight to the FIGHT mode, the NO, I CAN WIN mode.

For the last 3 years I have had multiple doctors telling me what had to be done. “Take this medicine then that one” and so on.

Let me take you back to November 2015, 6 months after diagnosis and hardcore chemo, a mastectomy of one breast, lymph node removal, more chemo, 36 rounds of radiation, and tamoxifen. My hair was coming back in and I was regaining my strength. My blood work was looking better and better. “Let’s celebrate on surgically removing the disease from my body and get back to finishing the work on our house,” I thought. I can go back to work. Yep, successful.

I had painted almost 1,200 square feet of my house when I noticed more back and hip pain than usual. I have dealt with fibromyalgia, [a chronic pain condition,] since I was 28 years old. It was pain I was accustomed to and pain I had learned to manage. NOT THIS PAIN. This pain radiated to my thigh. It was intense. My family doc ordered some x-rays to take a look, then a CT scan of my hip and femur ... then an instant appointment to an oncology bone surgeon. My femur had splintered and revealed lesions and a small tumor inside my femur bone. It was metastatic breast cancer in my bones. Yes: I had been hobbling around for 6 weeks on a broken femur. Two days later I was in surgery getting a prosthetic femur and the surgeon was able to scoop all the bad bone out and put me back together.  Upon healing I went through radiation to my hip.

The surgery was such a setback. It put me back like 10 months, causing mobility issues, weight gain, increased neuropathy, extreme fatigue, anxiety, depression and fainting. I troopered up and took gratitude that once again all active cancer was removed from my body and it was time for rehabilitation. I didn't snap back very quickly — as a matter of fact, I have yet to snap back. I was having tremendous pain in the bones and joints of my feet and legs. A side effect from the tamoxifen or was there more cancer? My doctor wouldn’t listen when I told him how terrible the tamoxifen was making me feel, so I stopped taking it on my own and after about 8 weeks the pain had gradually decreased. Well, except for in my shin bone area and the calf area of the same leg.

[Editor’s note: Kim later got a second opinion and a new oncologist. If your doctor isn’t listening to your concerns, consider getting a second opinion rather than stopping treatment.]

A bone scan and another CT scan revealed a tumor in my fibula. So again with the radiation. After that, x-rays confirmed new, healthy bone growth in the hip, femur and fibula of the same leg and confidence from my doctors that once again there was no active cancer in my body.

I currently have no evidence of disease, or NED. Kind of sounds like a contradiction, since metastatic is forever. That part right there is so very hard to wrap my head around.

Now everything is up to me to do or not do. I don't feel I can even celebrate the NED scan that cost me $2,000 out of pocket. What pocket? Ours is empty, we are credited out and maxed out.

What do I do now and how do I keep up financially? How much more does my family have to witness and how many more hours can my husband keep working to make the ends meet?

I have met ladies who have cancer that has progressed much further than mine has in the bones. I am told that the femur and leg are usually first to appear, then comes the spine, etc. I have talked to ladies who are dealing with so much pain despite heavy pain medication and radiation. Radiation does help me with the pain management. 

So for me, the breast part was easy. It’s the beyond the breast part that is most frightening. 

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