I am a woman living with Stage 1 breast cancer. Even though I am Stage 1, not Stage 4, I know it’s possible that I very well might metastasize someday.
My loss, along with my breasts, my hair, 24 lymph nodes and the free use of my arms for the rest of my life because of lymphedema, is the loss of the illusions of control and certainty. Before I got breast cancer, I thought if I did everything “right” – arrive in a family with no history of the disease, eat right, keep my weight down, exercise, and avoid HRT, I’d never be the 1 out of 8 women diagnosed with breast cancer.
I was wrong. It didn’t matter.
I was aware. I went for my mammogram every year. I thought if I did, early detection would at least find a tumor if there was one there to be found.
Wrong again.
My right nipple’s Paget’s Disease was first diagnosed as an “infection”. In true cancer sneakiness, it first appeared to be responding to the antibiotic I was given to treat it. Fortunately, the surgeon I’d been sent to “just to be on the safe side” insisted I go immediately for a diagnostic mammogram and an ultrasound.
Unfortunately, neither of these tests showed anything amiss in either breast. The radiologist came in and examined my nipple after he had reviewed the test results. He told me, again, that the nipple was only infected.
You can imagine the state of euphoria I was in when I left his office that day. I had had the “Gold Standard” of diagnostic tests, and they both said I was perfectly fine!
But by the time of my surgeon’s follow up appointment eight weeks later, the nipple had exploded into a literally bloody mess. I reluctantly signed the consent forms to have the “infected” nipple and a benign cyst under the nipple removed.
The first shoe dropped. The bloody nipple was Paget’s Disease. Hiding underneath the nipple and the benign cyst was DCIS … and a 1.25 cm Invasive Lobular Carcinoma. My surgeon had not realized this during the surgery so he hadn’t removed any lymph nodes; he hadn’t known he needed to because the results from my diagnostic mammogram and ultrasound said everything was fine.
While I was researching radiation, mastectomy, lymph node surgery, etc, etc, I went for an MRI, because the first set of tests had missed everything in the right breast. The report said my left breast was healthy, “consistent with previous studies.” Naively, I believed the MRI report. After all, it was supposed to be much more accurate than the diagnostic mammogram and ultrasound had been.
I decided to have a double mastectomy anyway. And yes, I heard all the arguments against it -- no increased survival, more difficult surgery, increased risks of infection, blah blah blah, yada yada yada. I figured that with 3 cancers in one breast already, my other breast was a ticking time bomb. Not to mention that the best diagnostic tools had missed those cancers.
The other shoe dropped. The “healthy” breast turned out to have a 1.0 cm HER2+++ Invasive Ductal Carcinoma lurking inside it. I had a third surgery to remove lymph nodes on the left side. My oncologist canceled the oncotype testing for the first tumor, because it didn’t matter anymore. There was a HER2+++ tumor to worry about now, and chemo was a given.
All the lymph nodes removed on both sides were clear … so I am Stage 1. Yaaaay, I’m cured, right?!
Wrong again. The more I researched, the more I discovered that Stage 1 is no guarantee that the cancer won’t come back, even after chemo. There is still a 30% chance of metastasis. And I’ve had tumors in both breasts. But there is no way to know if I’m one of the 30% or not. So little is known about how, why, and when some tumors metastasize while other tumors don’t.
Why don’t we know more? Research takes money. Most breast cancer funding goes towards awareness and early detection, not to metastasis research/cure.
I’ve completed my 6 rounds of chemo and I’m finishing up my year of Herceptin. I take my estrogen blocker every day (both tumors were estrogen positive) and my bone pill for osteoporosis weekly. I tell myself I’m doing everything I can do to stop a recurrence or a metastasis from happening.
But the threat of it, after I’ve beaten every other unpleasant odd out there, stays with me like a hovering thundercloud.
I detest the word “survivor”. It implies everything’s over and I don’t have to think about cancer, or concern myself with it anymore. The very fact I have to keep on taking an estrogen blocker for at least 5 years is pretty darn good evidence to the contrary, wouldn’t you say?
So you can keep your pink ribbon. You never know if you, or a member of your family, female or male, because men get breast cancer too, will be diagnosed with it. You don’t know if you, or someone you love, will end up being one of the 30% who will die from it, no matter what Stage they were when they were first diagnosed. Because THERE IS NO CURE FOR BREAST CANCER. And until there is more funding for metastasis research to include prevention of metastasis, there most likely won’t be. Awareness, early detection, and a million pink ribbons won’t change that.
Carol A. Powers retired from the Air Force Reserves and the Florida Bar after spending 25 years as a JAG (attorney) both on active duty (1987-1991) and as a reservist (1991 -2012). Her assignments included living stateside and overseas (UK and Spain), providing legal services and advice in the areas of military justice and civil law to Air Force commanders, airmen, and their family members. Carol and her husband Steve, a retired Air Force maintenance officer, live in North Carolina, with their son, Zachery, a high school senior, who they homeschool, and 2 cats. When she isn’t reading or baking (her 2 favorite hobbies), she’s working on a memoir, “It Started With A Squirt,” about her experiences with breast cancer, along with writing a time travel novel that has nothing whatever to do with breast cancer.
