Gone are the days when a woman would go “under the knife” not knowing whether a suspicious breast lump was malignant or benign. After the surgery, she might wake up with her breast intact. Or she might find that it had been removed “just in case.” The uncertainty of the outcome was overwhelming to the women who experienced such surgery.
In decades past, the radical mastectomy was the norm. The philosophy was that removing as much tissue as possible would surely deliver the best outcome. The radical mastectomy gruesomely evolved into the super-radical or ultra-radical version, very often yielding disfiguring results. Aggressive lymph node removal, plus excision of the latissimus and pectoralis muscles, left many hunched-over, disabled women in their wake. Despite this protocol of removing large amounts of tissue, breast cancer survival rates did not improve.
“Lumpectomy,” the term for a now very common tissue-conserving surgery, was originally conceived by Dr. Geoffrey Keynes. The term was a jeer by his fellow surgeons. To excise a tumor and conserve tissue – instead of radically removing absolutely everything in its path – was pure folly to the medical establishment at the time. However, research has since revealed that a lumpectomy – combined with radiation – has virtually identical survival outcomes to a full mastectomy in cases when the cancer is detected early.
I learned all this from reading The Emperor of All Maladies by Siddartha Mukerjee, a “biography” of cancer. It’s a tome, for sure, that details the fascinating history of this devastating disease, the evolution of its treatment and the quest for cures.
Even with all the facts and figures I had gleaned from reading this book (two times, cover to cover), when my breast cancer was diagnosed, I was still inundated with data, numbers, and jargon. They flowed towards me faster than I could decipher them.
I knew I had to understand what all this information meant with regard to my life. This was no longer about discussing some book in book club, this was personal.
Unlike patients in decades past, I learned from the biopsy results that the lump was cancerous before going into surgery – so I had a little bit of time to wrap my head around that.
I also knew details about the size, location, and type of tumor. I learned about various other tumor and genetic marker results and options for advanced targeted therapies for my particular cancer.
I also learned about ki-67, a nuclear protein present in very low levels in quiescent cells (those that weren’t causing any trouble). Put simply, the ki-67 number revealed how fast the tumor was growing. It revealed how bad the NLMF (that’s my technical term that stands for nasty little motherf*cker) could be. Mine was listed as >15 percent. But no one could tell me exactly how much greater. Or how bad >15 percent was. At that point, I had no context.
So, it was showtime and the choice had to be made: lumpectomy or mastectomy? After consulting with my cancer surgeon and reviewing survival statistics, I chose lumpectomy. She would complete her portion of the surgery, then my plastic surgeon would do tissue re-arrangement on that breast and reduction on the other. If the margins were clear, I would not need any additional surgeries.
The surgical pathology report flooded me with even more information. It provided more detail on the biopsy results and also revealed there was no lymph node involvement and that the surgical margins were clear of any cancer cells. All my numbers were very, very good – in fact, extremely good.
The only exception was that pesky ki-67 percentage. After surgery, the ki-67 revealed how bad my NLMF really was. Again, it was >15 percent. The same vague and troubling number. That damn “greater than” sign.
I soon learned that a ki-67 of 10 percent or lower, at least in early breast cancer, would indicate slower rather than aggressive growth. So <10 percent would be good news on a pathology report. Fifteen percent is heading into not-so-good territory and higher than that, the numbers just get more worrisome. It was the “greater than” sign that scared me. Did it mean 16 percent? 20 percent? Or was it worse than that? How much worse? My oncologist, Dr. S., decided to dig deeper and do additional tissue testing to get a clearer picture.
When the results were back, he phoned and asked me to meet in person. I knew what was coming. I dreaded meeting with him. With no lymph node involvement, I was originally scheduled for just radiation after surgery, but my ki-67 percentage warranted a more aggressive recommendation: the addition of chemotherapy to my post-surgical regimen. Much like hearing the cancer diagnosis, it was one of those “stop the world, I want to get off” moments.
The prescription was a cocktail of two drugs, Taxotere and Cytoxan, in six treatments with three weeks between treatments. It is known as one of the more tolerable chemo cocktails. I was told I might feel like I had a mild flu for a few days after each treatment, then completely recover until the next treatment.
Lather, rinse, repeat.
Aside from the question of whether I would be cured of breast cancer, the next most important question I had was would I lose my hair? Dr. S. said this wasn’t a treatment for which he advised patients to drink a bottle of wine, have a good cry, shave their head and show up for the first treatment. He advised that I might lose all, some, or none of my hair. If it was going to fall out, he said, it would likely happen two weeks after the first treatment.
I adopted a dog the day before my first chemo treatment. I asked Dr. S. if this was a good idea and he emailed a resounding “YES!” So, I sat at home with a new dog waiting for my husband, H., to come home and take me to my first chemo. Of course, I’d read a lot about what it would be like, but there was still a large dollop of fear of the unknown with the first treatment. Would I have any allergic reactions? Would they (oh please, oh please!) give me enough anti-nausea drugs so I wouldn’t barf all night? Would it hurt dripping into my veins? Most importantly, would it work?
I am most fortunate that my chemo experience was pretty uneventful throughout once I got past the initial nerves. My oncologist started every infusion himself and he and Nurse K. were our constant companions for the several boring hours we spent there each time. Husband H. was there with me for almost every treatment, and even brought the dog along once. I had dear friends accompany me to treatments as well. A sweet friend flew in from Canada for one treatment during a huge rainstorm, which knocked out the power in various parts of the city. We ended up talking nonstop for two days at my house instead of going to chemo. I didn’t mind that at all.
All in all, I had very little fatigue, although a short afternoon nap was always on the agenda. And despite being sent home with a barrage of anti-nausea drugs, I had to take only one pill during the entire course of treatment.
As predicted, and with amazing precision, two weeks after the first infusion, 75 percent of my hair fell out in one day. It was stunning that I could stuff the bathroom wastebasket with handful after handful of hair, and it seemed to just keep coming. It was surreal. I thought I would sob if this happened, but I didn’t. To me this meant only one thing: the chemo was doing its job.
On the last day of chemo my blood work was the strongest it had been during the previous four-and-a-half months. I had tolerated the treatment as well as could be expected, and I emerged from it as strong as I could possibly be. I “graduated” at Dr. S’s office, knowing that he and his team might not have saved my life, but they gave me the best chance at more life.
My daughter made a wonderful dinner for us that evening. But then I spent the middle of the night violently ill. It was as if Lady Chemo, as I have since dubbed her, said “I’ve let you off easy so far, Miss Barbara. Now it’s my turn to deliver one last parting shot.” I spent the next four days recovering, feeling like I had a full-blown flu.
Touché, Lady Chemo. You are a ruthless killing machine, and that’s exactly what you’re supposed to be. You are the definition of passion in acquiring and vanquishing your target. I’m very thankful that you walloped me only once during our time together. I am reverential of your power, not only to kill this cancer, but also to bring me to my knees to demonstrate just how powerful you are. I thank you for all you did for me but, man, I hope our paths never, ever cross again.
My hair started growing back immediately. It was short for a long time but grew bit by bit, visually showing that this chapter was becoming part of my past, not my present. I didn’t lose any fingernails, which I (thankfully) didn’t know could happen. I slowly stopped wearing my wig and toques and even answered the door one day without one. My favorite UPS guy didn’t run screaming down the steps when he saw me. Although husband H. told me I looked artsy and edgy with a short do, I was more than ready to let the hair grow. I needed to look like me again.
So back to the second part of that big question: did it work? Well, there is no concrete answer to that. I finished treatment, was pronounced cancer-free and then was cast into a new great unknown. I realized that I had become friends with my radiation technician but there was no reason to continue that relationship. No doctor is waiting for me to arrive for an infusion or a scan. No phlebotomist is waiting to draw my blood.
I have no schedule to keep. I am just me again. It’s wonderful and daunting, all at the same time.
I do my best to understand the statistics and the odds of recurrence. As the days go by, very, very slowly, cancer is not the first thought on my mind when I awaken. I sleep better and deeper. I continue to heal.
I don’t really know if it’s banished forever, but I do have to believe.
Four years free and I still remind myself every day to believe.
This is the utmost test of faith I have ever known.