Sandra’s Story: Living with Mets for More Than 20 Years
Sandra Spivey
Southern California
Age at metastatic diagnosis (1998): 45
Current age (2015): 62
(Scroll down for 2018 update)
I’ve been living with stage 4 breast cancer since 1998. It took an agonizing 3 months to confirm the diagnosis with a biopsy and I got the news the day before I hosted Thanksgiving Dinner at my home for 18 family members. That Thanksgiving was like a Three Stooges movie. I told my mom about my diagnosis when we were alone, then my middle sister came in and wanted to know what was going on, followed by my eldest sister. When we opened the door to come out, the entire family just froze. My niece spilled red wine on my newly installed cream carpet and I totally forgot to make mashed potatoes.
At age 42 with my original diagnosis of triple-negative breast cancer, the pathology of my tumor mirrored that of my mother’s who was diagnosed 18 years prior. She had surgery and radiation. I decided to go for chemotherapy as well, fully expecting to have the same results as my mother. Unfortunately, three years later at the age of 45, my cancer metastasized.
My son was away at college and didn’t come to our Thanksgiving Dinner that year. My mother and I drove 1,000 miles north to see him so we could drop off his car. When I told him about my diagnosis, he was mortified. I was ready for that. I said “It’s your job to graduate and it’s my job to get better.” He graduated and I am still alive, riding the mets roller coaster for nearly two decades.
I continued to work the first 10 years after stage 4 diagnosis and got involved in my local Y-Me chapter along with the 3-Day Breast Cancer walk. I believe the exercise from training for the 3-Day walk helped me stay strong for the therapies ahead of me and may have even extended my life, as did the support of my parents, my husband and my other family members.
My daughter turned 13 the day of my original surgery. One night, as I was tucking her into bed, she said “Mom, I know you have breast cancer and so did Granny. I know that I’ll get it too, and I want you to know that I’m OK with that.” Although a sweet sentiment on the surface, this motivated me to want to do something to stop the disease so that her generation wouldn’t have to worry about ever dying from it.
My interest in the science of breast cancer and advocacy brought me to many National Breast Cancer Coalition conferences and Project LEAD. I have participated in nearly two dozen breast cancer research review panels, sitting right next to researchers, statisticians, clinicians and epidemiologists, giving them the message that stage 4 needs more attention and funding.
I’ve been involved with the Y-Me Helpline and then became a peer counselor for After Breast Cancer Diagnosis and Living Beyond Breast Cancer. When others ask me what treatments I’ve been on, it’s hard to remember them all. Some of them aren’t being used any more, like high dose chemotherapy followed by stem cell rescue. Luckily I haven’t exhausted all of my treatment options and I continue to try to stay as healthy as I can so my body is able to withstand what treatments may come my way.
2018 Update
Sandra Spivey is a wonderful advocate who has lived with MBC for an amazing 23 years. She’s shown here with her oncologist, Dr. Farah Brasfield.
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I am desperate to get someone to talk with my mom about beating this, although her case is not the same as Sandy’s, My mom didn’t get diagnosed until age 84, she had an adult onset of diabetes, they botched her surgery, and did not cut away enough of the diseased tissue, and came out of surgery with black necratic tissue. She could not heal, they had to open it up, attempt to heal from the inside out, went to the clinic for Wound treatment 3 x a week, after a month of that, and the fact that my mom is allergic to almost every kind of tape and gauze, I foungt hard and got her into another Dr at the clinic, who said this never should have happened, he suggested Plastic surgery to take off the rest of the dead and diseased tissue which should have come off in the first place. Did that, it was then 2 and a half months since the original surgery, she was at an out of state clinic, I moved her back to her home state and got a great referral from the American Cancer Society. However, which we knew, she had missed her window to get any other treatment, plus the fact they failed to tell her they found from her surgical biopsies that it was metastatic. Saw the new oncologist, and went for her regular follow ups. It had been 3 years and supposedly no sign, then out of the blue, it shows up in her spine, not just in one spot, but the entire spine, and femur. Her diagnosis 2 – 6 months without treatment, with treatment maybe one year, however, her quality of life would suck. We are trying to now treat it Holistically, not doing too good so far. Have gleaned information, but have as yet found a Dr to work with. The majority of the places just state it is not cureable, and they do not have a real targeted treatment plan for it, other than by first going after the Her2, she did have a low concentration of it in the original, yet they deemed it triple negative, after a second opinion. So, she never had a chance for the addtl treatment after surgery, went 3 years undetected, and now…what to do? Anyone?
I have started in the last 4 months .having lower back pain that comes and goes .what are the symptoms of metastatic cancer as I had stage 2 and 3 breast cancer 4 years ago I had a masectomy and a rebuild almost coming to the end of the rebuild i