I heard the whispers, words I wasn’t meant to hear. “Did you know her cancer came back?” whispered a colleague I had known for 20 years. “Is she going to die?” was the new colleague’s response. The first colleague replied, “Not likely. She just gets cancer whenever she wants time off work. She never dies.” The words cut me to the bone, leaving me hurting yet strangely numb at the same time.
There really was no need to whisper about my diagnosis at work. I never hid the fact that I had breast cancer in the past. I was surprised the gossip mill had started so soon as very few people knew I had been diagnosed with breast cancer for the fourth time. I had only just received the news myself and had told those in management I would be taking extended sick leave once again once I had a surgery date.
The comments confused me. I get cancer whenever I want time off work? Surely there are easier ways to take time off then having another mastectomy and more chemotherapy. I never die when I am diagnosed with cancer? Well that has been true so far but at that point I had not had any scans or tests to see if the cancer had spread. At that point, all I knew was the cancer was back after a 16 year reprieve since cancer number 3.
“She never dies” rang in my head the rest of the day. Do they really want me to die to prove I actually was sick? Do they not understand the physical and emotional toll breast cancer and its recurrences take on an individual? Would having a funeral make everything better for people so they could recast me as a heroic figure battling cancer to the bitter end instead of just a physically and emotionally battered woman trudging through treatment over and over again? The one thing I have learned about recurrences is that their negative effects are cumulative over time. Each recurrence is emotionally harder than the one before. Each time your recurrence is contained before it spreads throughout your body makes you feel you are living on borrowed time and that your luck will run out eventually.
The message that is repeated over and over is that once you reach the 5 year cancer free mark, you are “cured” of cancer. This may be true for many people but it is not universally true for everyone. Many people have local recurrences of cancer in the same breast where they had it the first time. They may develop new primary breast cancer in the other breast or more rarely like me, develop a new primary cancer in the same breast. The pathologists decide if it is a recurrence or a new primary cancer based on how closely the second tumour resembles the first. If the second one is markedly different than the first, or if it occurs in the other breast, it is considered a new primary breast cancer. If it is a recurrence, it is thought that surgery/radiation/chemotherapy left some cancer cells behind that grew and multiplied to form a new tumour. As long as the recurrence or new primary is confined to the breast, it cannot kill you. It is only when it spreads beyond the breast(s) or mestastisizes to another body part, that it becomes lethal. Once that happens, there is no longer any talk of curing the cancer, only treating it until the treatments stop working.
Recurrences/new primaries produce interesting responses in people. With my first breast cancer at 29, my divorced parents who hadn’t talked to each other in 8 years, rallied together and stayed with me for weeks during surgery and radiation.
When my second cancer in the same breast was diagnosed at my 5 year “cure” mammogram, my mother had died 6 months earlier and my father made many excuses why he could not make the trip a second time. This was the first cancer that happened while at work and most of my colleagues rallied around this scared 34 year old facing a mastectomy and chemotherapy. They treated me as though this was my first breast cancer. I know that the night of my mastectomy, numerous work colleagues were gathered around my hospital bed. I was groggy and in pain but was aware enough to know that they were there and they cared. In the weeks that followed, many workmates dropped off food and accompanied me to my chemotherapy appointments. I felt supported, cared for, and loved.
I felt a litle less love from the local breast cancer community. The first time around, doctors and social workers went out of their way to hook me up with other breast cancer survivors. Granted most of these women were 40 – 50 years older than me who had lived long and full lives, but I appreciated the effort. With the first cancer, I had a very proactive medical social worker who hooked me up with relaxation groups, guided meditation groups, and the only support group they had at the time for patients battling all kinds of cancer.
By the time of my second cancer, I was pretty much left on my own. No volunteers, no social worker, and I had to beg to see a real live person who had reconstruction surgery. One finally showed up the night before my mastectomy but had a completely different surgery than I was having. I had the same breast cancer surgeon as I had for the first cancer. I couldn’t help but feel he was less interested in answering my questions this time around. I guess I was one of his failures for not quite making it to the 5 year
cure mark. He just kept drumming into my head that I would have to wait an additional 5 years to get pregnant or my baby could very well be left without a Mommy. Sometimes during that experience, I felt like the medical professionals viewed me as just another Dead Woman Walking.
The cancer struck my other breast 2 years later. I had barely returned to work and then was off again for surgery and radiation. By now, I was quick to pick up the signals that something was wrong with my mammogram. The technician would call me back into the room for a few more mammograms. Then she would disappear, returning with one or more people, who would whisper among themselves. At one point, I swear a whole group of student trainees crowded into the mammogram room, looking intently at the pictures. I would say “what are you seeing?” and the original technician would tell me there was nothing to worry about, this was just routine. I’d had enough mammograms by then to know this was anything but routine. When I got the official news from a doctor a couple of days later, it wasn’t exactly an overwhelming surprise.
My Dad was too busy to come visit once ago. I had a new boyfriend who I would eventually marry (and divorce) who took good care of me. We even bought a puppy to aid in the healing process. Again, this was his first time dealing with my breast cancer so he was supportive.
By this time, my colleagues were suffering battle fatigue dealing with my illnesses. There were a few meals, a lot less visitors, and more people who felt I should bounce right back. This was my third new primary breast cancer in 7 years and I was feeling beaten down and not terribly bouncy. Cancer surgery in the late 80s and the mid 90s involved removing all the lymph nodes under the arm on the side of the cancerous breast. This procedure is not the routine anymore but at that time it was and it made even a lumpectomy a gruelling operation with an extended recovery period.
Also, each time there is a recurrence/new primary, there are a battery of scans of the liver, brain, lungs, and bones and numerous blood tests to see if the cancer has spread. Each new test is nerve wracking as you never know what may turn up. I have been very lucky so far that the cancers have been caught before they spread beyond the breast.
I noticed when I started radiation treatments after Cancer 3, the other women would be friendly while we waited our turns. If however I said this was my second time doing radiation or that this was breast cancer number 3 at age 36, the women would clutch their floral housecoats tighter around themselves and would instinctively move a little farther away from me, as if my repeated cancers were contagious.
I lucked out for the next 16 years. No cancer. I went for a routine mammogram and was called back for more pictures. The technologist told me to wait in the mammogram room while she went to check something. When she said more pictures were needed, I demanded to speak to the radiologist as I knew something was wrong. To my surprise, the radiologist did enter the mammography room. He stared at his shoes the whole conversation. He obviously didn’t talk to patients very often. He said there were calcifications on the mammograms that were highly suspicious for a malignancy. He had reviewed my prior mammograms and what he was seeing was new. I pushed him harder on what “highly suspicious” meant until he said he was almost 100% certain it was cancer again, but only a biopsy could provide the absolute truth. I was immediately sent for an ultrasound where no tumour could be found. Even after referring to the mammogram, no lump or bump could be felt. The surgeon thought this meant it was a tiny cancer caught extremely early. She was in no rush to schedule a biopsy or a surgical date.
Things started going off the rails at the biopsy. Even with the mammogram, they weren’t sure they were hitting the right spot so the needle went in over and over again. When it was confirmed to be triple negative cancer again, the scans started. My sternum lit up on the bone scan. It had been broken 4 years earlier and they couldn’t be sure if they were seeing the break or cancer. The CT scan showed a web of tiny blood clot embolisms at the bottom of my lungs. As I had a spontaneous pulmonary embolism in one lung five years before, they immediately started me on blood thinners and debated delaying the surgery. The surgery went ahead as planned and to everyone’s surprise, it was 2.7 cm in size, making it a Stage 2 cancer. The reason it couldn’t be felt was that it was deep inside, close to my chest wall. The pathologists are evenly divided as to whether this was a new primary or a recurrence that had been hiding in my body for 16 years.
By this time, my father was in a nursing home and I didn’t even tell him about the new cancer. I was a single Mom with 2 children, then aged 9 and 11. Some of my work colleagues did get together and raise money for flowers and groceries. 2 of them would visit me at least once per month while the rest kept their distance. One friend brought over her husband and brother-in-law and they and my kids did a good job housecleaning. I had a medical social worker again and she helped with getting me free rides to chemo and getting me into 2 healing touch sessions.
This month marks 3 years since I finished my last chemo. After numerous CT scans, the radiologists have concluded that the bright light on my sternum during bone scans comes from trauma not cancer. The blood clots on my lungs disappeared after 6 monthes of daily injections in my stomach with blood thinners.
Having multiple recurrences has taken a huge emotional toll on me. I no longer have faith in my body. It has betrayed me too many times. I no longer believe in an orderly universe where good things happen to good people and bad things happen to bad people. The universe seems pretty random to me. Cancer survival seems especially random to me. Every day on Facebook, I read about another woman with breast cancer who has died. Very often they are young and leave small children and a grieving partner behind. These were women who ate organic foods, ran marathons, and looked after their bodies. They did everything right and yet were struck down in the prime of their lives.
Although I have had a double mastectomy, there is no guarantee I won’t get another recurrence/new primary breast cancer again. No matter how close they cut, it is impossible to remove every single breast cancer cell during surgery. I could probably summon the emotional strength to battle a recurrence/new primary for the fifth time, if only for the sake of watching my children grow up. But what worries me is that I have been playing Russian Roulette with breast cancer for 26 years now. I have been wounded but am still sitting at the table, waiting for my turn to press the gun to my head. How many times can you stare death in the eye and walk away still alive? One of these times, a new recurrence/new primary won’t be caught and treated in time. Or like 30% of women initially diagnosed with Stage 1-3 breast cancer, there will be no recurrence, just the dreaded metastasis to brain, bone, lungs, or liver from cancer cells still lurking in my body even after the last surgery and chemotherapy.
I read in so many forums how women are terrified of having a recurrence. Please remember if it is local to the breast, it can be treated and life will go on. It is metastasis that you need to worry about as for that there is no cure.
Have you had a recurrence/new primary since your initial treatment? Did you have early stage cancer that you thought was cured but it metastisized elsewhere? Please share your experiences in the comments below.