It’s My Cancerversary…And I Don’t Feel Like Celebrating

After 4 breast cancers since 1988, I’ve lost track of the usual markers of cancerversaries. I can remember month and year of diagnoses but can no longer keep specific dates in my head. Also, there is confusion about what date to use for 3 of my cancers where the words and behavior of mammogram technicians and doctors resulted in my”knowing” I had cancer before the official biopsy results were in.

In any event, February 1988 marked my first breast cancer diagnosis at 29. That makes it 27 years of “living on borrowed time” as that first cancer was caught by me through a fluke of accidentally touching the right place at the right time and following up immediately with my doctor. Had it not been for the accidental touch, the tumor would have continued to grow and may well have spread into Stage 4 cancer.

Last year, I was very excited about making it to 26 years since first diagnosis. Maybe part of what makes me uneasy about claiming 27 years of survival is that I had a total of 4 breast cancers during this period. Other people seem to count their survival status as cancer free time and start counting again from zero once they have had a recurrence. If that is the “right” way to do things, I guess I am only a 3.5 year survivor as my last breast cancer was in July, 2011. Do people think I am a fraud claiming 27 years of survivorship when many of those years were spent in treatment for new primary cancers and recurrences? I am always careful to say 27 years from first diagnosis so I don’t think I am misleading anyone.

What really has me bothered this year is that for the last 6 weeks or so, my Facebook feed has been filled by the deaths of so many young breast cancer patients. It seems every 2 or 3 days, someone from one of my Facebook groups has passed on, leaving a young family behind.

This year I felt uncomfortable announcing 27 years of survival from first diagnosis under the circumstances of all the surrounding death in the air. Some people say they draw hope from my longevity, particularly in light of the multiple bouts of triple negative cancer, my BRCA1 status, and my lack of what would now be considered optimal treatment for someone with my history.

On the other hand, I don’t doubt that it strikes resentment in some people’s hearts that I continue to live despite all the odds stacked against me while others die shortly after diagnosis or after being told their prognosis was excellent as their cancer was detected early, they received aggressive treatment, and they were BRCA negative.  Announcing 27 years of longevity in this atmosphere, seems a bit like bragging or gloating, which is the last thing I want to do. I have no idea why I am still alive considering all the cards stacked against me. All I can do is get philosophical and say this just isn’t my time to die. I have no secrets for longevity or avoiding Mets and we all know I have no secrets for avoiding recurrences!

Along with the tragic death announcements, there has been an increase in the  amount of posts from women speculating on what caused their cancer and what they can do to prevent a recurrence. I have no answers for either causation or prevention. I have said before that cancer seems pretty random to me striking both triathlete vegans and self-admitted couch potatoes and everyone in between. I have yet to see a strong pattern or have an aha moment where all the pieces of the puzzle fall into place for me. The same goes for recurrences and metastasis. Those who radically change their eating habits and make other lifestyle changes seem as likely to have their cancer come back as a recurrence or a metastasis as do those who change very little. After 27 years of watching cancer prevention tips come and go and sometimes be turned completely around (I just read that high doses of soy are good for preventing cancer after 20 years of it being cited as a cancer promotor), I personally have little faith in these promises of prevention or a cure.

Along with the string of deaths, there seem to be an unusually high number of women experiencing either local recurrences or Mets. The combination of the deaths and the disease progression have created high levels of anxiety in the support groups. You start to wonder if you are next in line for some cancer catastrophe to strike your life. This probably explains all the comments about cancer causation and prevention.

I want to feel good about my 27 years of post-diagnosis survival. The road has been hard and bumpy and like everyone else, I have no idea what is around the next corner. I have spun the cancer Wheel of Fortune 4 times now and have been lucky to have only local recurrences. But how many times can you spin that wheel and avoid the slots marked for metastasizes and death? I think I have used up all my get out of jail free cards and if forced to spin again, I don’t anticipate a 5th local recurrence.

Intellectually, I know the deaths and disease progressions will level out in time. But in the meantime, these events are extremely stressful for everyone involved. It’s not a good time to be celebrating a long-term
cancerversary in the midst of all this pain.

So I will be privately pleased to still be alive and able to watch my children grow up. At the same time, I will continue to mourn for the lives lost or forever altered by new recurrences or metastic disease. This will be a very quiet celebration of life and one that I will not take for granted. Thinking of my fallen pink sisters, I think “there but for the grace of God go I”.

Sharon Greene. February4, 2015

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Having Breast Cancer 4 Times

Some people skip my posts as they don’t want to know that breast cancer can strike more than once. They believe that my story must be a real downer as who wouldn’t be depressed to have their cancer come back again and again and again? Others look to find differences in their stories from mine to reassure themselves that this will not happen to them. I don’t know how many people have asked me if this whole mess couldn’t have been avoided if I just had a double mastectomy with my first breast cancer at 29? Hindsight is usually 20/20 but even my oncologists aren’t convinced that would have stopped the cancer from coming back. I had new primaries, not recurrences, and it is very possible they still would have grown in my mastectomy scars. I would like to assure you my story is not all doom and gloom and there are many positive conclusions that can be drawn from my story.

I wrote at length as to why I made the treatment decisions I did in my blog post entitled. Why I Chose Not To Have A Double Mastectomy.  Basically, it was a combination of historical reasons (double mastectomies were not offered as an option in 1988 when there was cancer in only one breast), lack of the medical knowledge we have now (there was no disease called triple negative breast cancer then as the third component -herceptin – had yet to be discovered) and genetic testing did not exist until Cancer 3 and the early tests were less comprehensive than they are now. I in fact had BRCA testing in the mid-90s and was told I was negative, a “fact” I believed for the next 16 years, although I later learned I had a major BRCA1 mutation.    
                                                                    The other factor consisted of personal reasons for choosing the options I did. With no internet and no support groups for young women with breast cancer, I did not even know of young women with mastectomies, let alone double mastectomies. I was 29, then 34, and then 36 when my first 3 breast cancers struck. I was single, childless, and reconstruction surgery was not terribly advanced, and I adamantly didn’t want a mastectomy. I got one anyway at 34 when my cancer returned in the form of a new primary in the same breast that had a prior lumpectomy and radiation treatment. Mastectomy was the only option. Reconstruction was very bad and it turned me off from having a second mastectomy when cancer struck in the other breast 3 years later.

In any event, it serves no purpose to speculate if things would have turned out differently had my treatment choices been different all those years ago. I made the best decisions I could at the time in consultation with my doctors based on the state of medical knowledge at the time and my personal preferences for treatment.

To be a 4 time cancer survivor without Mets who has lived almost 27 years since the time of first diagnosis is like being a medical unicorn. There aren’t many like me around. My mother battled 4 different types of cancer in a 12 year period – breast, metastic ovarian, and 2 different types of colon cancer, the second one metastic. Other than that, I don’t know anyone else with a cancer history similar to my own. It can be a lonely feeling at times, not having any real life examples of others who have walked a similar journey. What happens next? Do I live to a ripe old age, dying for reasons unrelated to cancer? Is there going to be breast cancer 5 and if so, will this be the one that metastisizes?  Will the earlier cancers metastasize and put me into Stage 4 cancer territory? The doctors have no answers for me. So a big part of having had 4 different breast cancers is the uncertainty on the part of myself and my doctors as to what happens next.

Having cancer multiple times, plays havoc on your mind and emotions. Just when you think you are “cured” and cancer is a thing of the past, it rears its ugly head again, announcing, “I’m back…”  Having one bout of cancer is incredibly stressful to your body, mind, and spirit. Having it 4 times is downright demoralizing, with the initial thought each time that I can’t go through this yet again. But really what choice do you have? If you want a shot at living, you”ll have the surgery and take the chemo and/or radiation recommended. Having watched an aunt die from completely untreated cancer, that is not a path I’m willing to take. Unfortunately for me, experiencing the trauma of cancer over and over again, led to depression, panic attacks, and ultimately PTSD. I am finally getting the professional help I need to tackle these issues. In a culture that says breast cancer patients have to be brimming with positivity all the time, this fake front I believe contributed to my PTSD condition. Never being able to acknowledge how you really feel about going through treatment one more time, can lead to a crazy-making life.

Another thing that I have had to grapple with is survivor’s guilt. Why have I been able to stay Mets-free and survive 4 different aggressive triple negative breast cancers with a highly defective BRCA1 gene? Why do others get breast cancer once, have it metastasize, and die from the disease while mine functions more like a chronic disease that flares up every now and then? I have no answers to this question. No answers at all.

The flip side of survivor’s guilt is that hopefully it takes away people’s fears, at least a little bit, when the newly diagnosed hear my story. So many women come into the online Facebook groups that deal with triple negative breast cancer, already convinced they have been handed a death sentence. Others worry that they have been diagnosed with a BRCA gene and that combined with triple negative breast cancer, dooms them to a short life and an early death. I try to point out that I have had high grade triple negative cancer 4 times and have a major BRCA1 mutation and am still alive and kicking almost 27 years later. I have not been a model cancer patient by any means but I am still alive. Neither triple negative cancer nor a BRCA mutation or both necessarily mean an immediate death sentence.  I hope my story helps to reinforce this message and allows the patient reading it hope for a long future. The 4 bouts of cancer are a very rare occurrence and it is my wish that people stop fixating on the 4 times and focus on the 27 years of extended life.

Sharon Greene  January 23, 2015

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Finding My New Normal After Losing My Old Normal

I

I was first diagnosed with breast cancer at 29. February,2015 will be 27 years from the time of my first diagnosis. I have spent almost half my life battling breast cancer.

“Finding your new normal” is one of those popular buzz phrases spoken by oncologists, counsellors, and other cancer survivors. I’ve always felt that this word was like a password to a secret clubhouse that everyone in Cancerland belongs to except for me. Although I know this password, I am obviously missing something that would allow me to gain entry. Maybe a special knock or a secret handshake is also required. While I can spout the phrase “new normal” without difficulty, I’ve never quite understood how those words applied to my life.

If we uttered the phrase “changes to your life” due to cancer, I could easily relate to that. I could draw up a long list of the ways my life changed with the first diagnosis,the first and second mastectomy,the bad reconstruction job,the repeated bouts of cancer,and the discovery that I lived for 16 years under the illusion I was BRCA negative when in fact I was BRCA1 positive all the time.

Maybe I have problems relating to the word “normal”. The changes that happened to my mind, body, and emotions were anything but “normal” as we usually think of the term. Losing my breasts, lymph nodes,fertility,and ovaries may be normal for BRCA positive cancer survivors and previvors but there is nothing normal about that in terms of the population at large. Being diagnosed with 3 separate breast cancers at 29, 34,and 36 is statistically improbable in the breast cancer world. Having a fourth breast cancer at 52 puts me into a rare category that very few breast cancer patients attain (or would want to attain). Top that off with all 4 cancers being of the triple negative variety (not influenced by hormones) which is a reasonably rare breast cancer, and there is very little that is normal about my world.

If we are talking about acknowledging that these things happened to me and that they form part of my present reality, I can do that. Have I fully accepted, embraced, and integrated these changes into my life in a positive and life-affirming manner? Uh no. Although I can be happy and positive much of the time, I am not happy that I had to go through these events at such a young age. I’m also not happy that I had to have my cancer come back over and over and over again. This is my life, this is my reality, this is my world but there is nothing normal about it. And there is little I can do to normalize my experiences so that they make some sort of sense in the context of the rest of my life.

I try to think back to what my old normal was. I was an only child who spent the first 12 years of her childhood growing up in a typical suburban neighborhood. My parents and I attended Baptist church every Sunday and my parents were complete tee-totalers. This “normal” existence underwent a dramatic change in 8th grade when my father went from complete tee-totaler to a full blown raging alcoholic and valium addict in the course of one year. My world was completely turned upside down and I had no idea how to deal with this “new normal”. My father’s alcoholism progressed with great speed and his moods veered between sickeningly sentimental and raging mad, with very little in between. My lifelong battle with anxiety and depression started in the 8th grade and progressively got worse throughout high school.

My mother felt the best way to protect me was to get me out of the house as soon as I graduated high school. We lived in a university town so we planned to find a major that wasn’t offered locally. We hit on Criminology as it was only available 1000 miles a way. Not the best way to plan for your future education, but it achieved its purpose and I was able to leave home at 17.

The next 12 years were the college and early employment years. I attained my BA in Criminology, gained some work experience as a probation officer, went back to university to complete law school and spent a grueling year articling (similar to interning) with a large law firm in Vancouver. I had dated widely, fallen madly in love at least twice, broken a few hearts and had mine broken in return. I never doubted that I would have a law career or that I would marry and raise a family. Those were the fun years filled with plans, hopes, and dreams about the future. After the chaos of growing up in an alcoholic home, I loved my fun filled yet hard working “new normal”.

On the eve of my entry into the legal profession, I had my first cancer diagnosis. It changed me in ways that still affect me today. The career was put on hold. The doctors said no pregnancies for 5 years or else I would die, so marriage and a family were put on hold as well. Although I only had a lumpectomy and radiation, I developed major body image issues as I knew no one even remotely in my age group who had a weird looking mismatched breast. I became shy about dating, not knowing when to break it to them that I had undergone breast cancer treatment. So dating was also put on hold. Fear,anxiety,and social unease became my constant companions after that first diagnosis and continue to haunt me today. Is this considered my first experience with cancer’s “new normal”?

I still believed that being cancer free for 5 years meant you were cured. Over that first 5 year period, I did launch my law career and began dating again. I was offered a promotion and a move to a new city hours before I went for my 5 year mammogram. I told my employer that I would be back shortly, that this mammogram was just a formality, as all prior mammograms had been clear. Unfortunately for me, this mammogram showed cancer again and a mastectomy and 9 months of chemotherapy were my only options. Good-bye promotion. Good-bye new city. And the 5 year no pregnancy rule started from scratch all over again.

I was off work for 18 months. I had lost my last illusion about being cured of cancer. Where the first cancer had brought fear and self-doubt into my life, the second cancer brought a kind of craziness. The world which I always believed was a fair and orderly place, became chaotic and events seemed completely random. Whether I lived or died seemed completely out of my control. Any plans I tried to make for my future seemed to be quashed as soon as they were made. It was clear that there were many things my oncologists did not know, many questions they could not answer. I felt a lot of confusion. It seemed that whenever fate was about to give me a big break, cancer re-entered the picture to turn my dreams to dust. Was this feeling of hopelessness and helplessness my “new normal” for my second cancer?

I had reconstruction surgery which looked bad even from the start. Even doctors and nurses at the Cancer Clinic would comment that I should see another plastic surgeon to try to fix it. My breast resembled a lumpy flattened pancake but as it had taken a long time to heal, I wasn’t eager to go under the knife again. My body image issues and self-consciousness grew considerably worse.

18 months after returning to work, a new cancer was found in the remaining breast. I had a new surgeon who said doctors had recently abandoned the 5 year pregnancy rule and that if I wanted a child, I should hurry up as I was already 36 and could have early ovarian failure due to the chemotherapy. I got married and we soon found ourselves at a fertility clinic. 2 rounds of IVF were unsuccessful so we formulated a Plan B. We started the adoption process and a year later, we had a handsome baby boy. 16 months after that, we were blessed with a beautiful baby girl.

I took one of the early BRCA tests and was declared BRCA negative. Life was good. Until one day it wasn’t. The marriage imploded, I was blindsided,and I was left as a single Mom to a 22 month old toddler and a six month old baby. Once again, my hopes and dreams were shattered and life seemed as random and arbitrary as it had during my second cancer.

The years went by, the kids kept growing, and the cancer stayed away. After 16 cancer free years, the cancer came back. I was looking at another mastectomy and more chemotherapy. Only this time around, there were children involved, ages 9 and 11. This time I really was afraid of dying as I didn’t want them to lose their mother at such young ages. The kids were scared too but wouldn’t really say so. My son wanted me to appear as normal as possible and not look like a cancer patient. He wanted me in a wig and full make-up 24/7 (didn’t happen). My daughter would feel sick with vague symptoms on chemo days or oncology visits. She wanted to accompany me to all these appointments as that seemed to make her feel more secure. It was another crazy hysterical chaotic year but we muddled through it somehow.

After cancer 4, I was encouraged to retake the BRCA test as it was now looking at things it hadn’t looked for originally. Suddenly, I was BRCA1 positive and at high risk for ovarian cancer. There was a great rush to have my ovaries and fallopian tubes removed as soon as possible.

With Cancer 4, I became a bit of a medical curiosity given that I was BRCA1 positive, had an aggressive grade of an aggressive cancer, and had survived for so long without the cancer metastasizing outside my breasts. At work,things were looked at somewhat differently. Between the cancers and the 2 adoption leaves, my coworkers saw me as someone who was rarely at work. The office atmosphere was decidedly chilly upon my return from Cancer 4. My self-esteem was plummeting, I still had side effects from chemo brain, and I started feeling incompetent in a job I had held for 25 years. A year ago, I took a medical leave and have since been diagnosed with post-traumatic stress disorder.

My “newest new normal” now has a mixed diagnosis of PTSD, depression, and anxiety. I no longer plan too far ahead for fear of jinxing any happy days that lay ahead. I worry about my children’s future – who will love them and look after them if I am gone? At the same time, I am forever grateful that I get to be their Mom. I try to live each day as if it may be my last.

Is this the “new normal” everyone talks about? Is it some combination of hard lessons learned and the feeling of walking on a trapeeze with no safety net underneath? The feeling that my luck will once again run out and I will be forced to take another spin on the Cancer Roulette Wheel of Fortune? Is it all those scary feelings combined with a fierce protective love for my children that keeps me going forward each day?

What does the “new normal” of cancer feel like to you? Have I completely missed the boat on this one? Is it supposed to be a positive thing or a negative thing? I really would like to hear your thoughts in the comments below.

Sharon Greene January 15, 2015

My Breast Cancer Came Back

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.

How the BRCA1 Gene Devastated a Small Family (Mine)

My mother, Lily Koval Brown, died exactly 22 years ago today of metastatic cancer. Her sister Joyce Koval Lamb died of metastatic cancer July 4, 1984. Their stories are completely different as mine is from theirs, but the one thing we all had in common was a mutation in our BRCA1 gene. Of course at the time of their deaths, the BRCA genes had not been discovered so it seemed like a sad coincidence that both died of cancer and that I, my parent’s only child, had breast cancer at 29.

One of my earliest memories of discussing breast cancer with my mother was watching an old 60’s movie on tv called “Valley of the Dolls”. In that movie, one of the characters played by the actress Sharon Tate (later to be infamously murdered by Charles Manson) learned she had breast cancer. Her solution to dealing with this disease? Suicide.

I remember my mother commenting that there was no way anyone would ever remove her breast. This was in the mid-70’s when breast cancer was firmly in the closet. It was also easy for my mother to make this comment as cancer didn’t seem to run in our family. With only her parents in Canada and the rest of the extended family still in Russia, we had no real idea if cancer did or didn’t run in our family.

I am not sure when my aunt first noticed the lump in her breast. It had to have been before 1979 as that year, at the age of 19, I moved to the city where she lived, not knowing a soul. My mother asked if I could stay with her for a short time or if she could at least help me find a place of my own. I gather the answer to both requests was a panicked no but she would be happy to talk to me by phone whenever I wanted.

Two years later, my parents split up and my mother moved to the same city where my aunt and I lived. She could never get my aunt to meet her in person although they did have long friendly telephone conversations. We didn’t suspect anything sinister about my aunt’s refusal to meeting us in person. We speculated she had grown eccentric and reclusive over the years although she was only 50.

Things came to a head when my mother was diagnosed with breast cancer in 1980. She never did have to make the decision about choosing her breast or choosing her life. The doctors recommended a lumpectomy, a new operation that spared the majority of her breast. This procedure was so new that radiation was not part of the treatment program. While my aunt sent a bouquet of flowers, she still wouldn’t make the effort to visit in person which hurt my mom deeply. The telephone conversations became fewer and shorter until they ceased completely.

The next news we had of my aunt came from her husband 2 years later. She was in the hospital as she had stopped breathing. My mother rushed to the hospital without any forewarning of what to expect. She found a skeletal woman in a hospital bed who appeared to be about 10 months pregnant.

My mother pieced the story together as best she could. It started with a breast lump that my aunt refused to get checked out by a doctor. Somehow over time, the cancer became physically apparent which was when she became a recluse. She had no medical diagnosis or treatment whatsoever until the time of her hospitalization. I still don’t know exactly what her cancer status was. It’s safe to assume she started with breast cancer but whether the huge abdomen was from metastatic breast cancer that had spread or if she developed another primary cancer or 2 along the way, no one knows for sure. The medical staff wanted to start chemotherapy but she refused as she didn’t want to lose her long hair. It wouldn’t have made much of a difference at that stage as her cancer was too advanced. She died a few days later in the hospital, long hair still intact.

My mother was flourishing in her new single life. She was always very upbeat and made friends quickly wherever she went. She reached the 5 year “cure” rate for breast cancer and we talked about how she made a much better decision about her cancer than her sister did. There was no thought of the cancer striking another part of her body, despite my aunt’s swollen abdomen, as we assumed this was just what untreated breast cancer looked like.

Fast forward a year and I got a call from my Mom that she would be having surgery for suspected ovarian cancer. They found her cancer had metastisized throughout her whole reproductive system and there was a further inoperable tumour behind her heart. She spent a year in a very aggressive chemotherapy program that resulted in long term side effects such as loss of hearing in one ear. She was determined to beat cancer and had the support of her many friends and work colleagues. Her hospital rooms always seemed like party central with people packed into the small room. If a positive attitude and social support could cure cancer, my Mom would still be alive today.

I had my first breast cancer two years later at 29. She flew to the city where I was now living and stayed with me through my lumpectomy and 6 weeks of radiation. The only time she was less than supportive of me was when she learned I had signed up for a clinical trial that would compare patients given one round of chemotherapy before surgery to those that had surgery alone. She did not want me taking chemotherapy under any circumstances. As it turned out, I was in the surgery alone group, so much to her relief I escaped chemotherapy that time around.

My Mother made it to 4 years past surgery for ovarian cancer only to learn she had developed a third primary cancer in her colon. The cancer was surgically removed and she had a temporary colostomy bag that she would have to wear for a year. Coming home from the hospital, she broke down crying tears of frustration and anger. It was one of the few times she ever showed me what an emotional and physical toll all these cancers had on her mind, body, and spirit.

A year passed and she had the reversal surgery for her colon cancer so she no longer needed to use the colostomy bag. She had now passed the 5 year mark for metastic ovarian cancer and the 10 year mark for breast cancer.

She had about 10 more good months of life. The best thing I did was spontaneously make the 12 hour drive to visit her in the summer of 1992. Everything seemed to be going great and we planned a side trip to a national park in Montana. On the day we were to leave, my mother sheepishly asked if I would mind cancelling our trip as she wasn’t feeling well. She strongly encouraged me to drive back home even though I had planned on staying a few days longer.

Reluctantly, I returned home. Within a week she called to tell me she would be having colon surgery again as another mass had been found. I talked to her surgeon after the operation who confirmed that it was colon cancer again but a completely different type than she had the first time. He also said they found metastic disease throughout her liver and there was nothing left to do that would prolong her quality of life. I asked how much time she had left to live and he paused, looked at me, and said maybe 6 – 9 months. He was either being overly optimistic or he found it easier to lie to me to give me hope. He said my mother was a remarkable woman having fought so valiantly against 4 unrelated cancers, hitting the 5 year “cure” rate on 2 of them. Maybe he wasn’t lying about the time she had left. Maybe he thought she would beat the odds one more time despite the grimness of the prognosis. In any event, I made plans with my mother for a trip we would take as soon as she got better. She gave me a sad smile but nodded along with all my dreams and plans.

About 6 weeks later, I received a phone message at work telling me to come quickly as my Mom only had 2 days left to live. I basically lived in the hospital room with her for the next 17 days until her body finally gave out. Her appearance was shocking as she had lost so much weight in the top half of her body that she barely resembled the woman I had seen 6 weeks prior. Her legs had become enormous from fluid build-up from her cancerous liver. I believe the cancer had spread to her brain as she became increasingly paranoid and suspicious of her food being poisoned and medical staff planning to kill her. She would have lucid moments – she planned her own funeral from her hospital bed – but near the end, she had seemingly lost all her words, communicating only in guttural sounds. The last semi-lucid conversation I had with her was that she had something important to tell me but she couldn’t do it in the hospital. She wanted me to meet her downtown. As that was impossible, I never learned what her important message to me was all about. I still wish I knew.

Although I spent 17 days bedside in the hospital, my mother clung onto life. Finally, I asked the nurses if I could leave for an hour to shower and bring new clothes. Of course, it was in that hour abscence that she finally let go of life and passed away. I saw her before anyone had time to pretty her up and she had the most incredible expression on her face. I can only describe it as a look of awe, as if she was seeing something perfect and wonderful. My mother’s final gift to me was to remove the fear of death. I have a lot of fear of the dying process but never again would I fear actual death.

It took until 2011, after an initial false negative on the first BRCA test I took, to learn that I was BRCA positive. By extension, so were my mother and my aunt. Unlike my aunt, I found my first breast lump myself and was checked out and treated immediately. Like my mother, I have had 4 primary cancers but mine have so far all been confined to the breast. My mother’s first breast cancer was at 50 while mine was at 29. She had 4 primary cancers in a 12 year period while I had 4 primary cancers in a 22 year period. 3 of my primary cancers occurred over a 7 year period.

My family was small to begin with and the BRCA1 gene cut a devastating path of destruction across my family tree. I have felt like an orphan since my mother died when I was 32. She has missed so much in the last 22 years. I have been roughed up by life quite a bit which has humbled me. I am no longer the spoiled brat only child I still was when she left me. She missed my marriage (and divorce), the adoption of my 2 wonderful children that she would have spoiled and adored, and any number of wonderful and terrible things that have happened through the years. I wonder what she would think of my double mastectomy, my 2 courses of chemotherapy, and the fact I had my ovaries removed as a preventive measure. Given her fighting spirit, I think she would have approved, despite her fears of mastectomy and chemotherapy.

There were so many times I thought that I have heard her voice in a crowd or smelled a perfume that made me think of her. It took a few years before I stopped automatically dialing her number on the phone to tell her some big news. Even 22 years later, I still miss my Mom so much it’s like a physical ache in my heart. I hope someday we will make that trip downtown together so she can finally tell me the important thing she wanted me to know.

Sharon Greene November 17, 2014

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Why I Chose Not to Have a Double Mastectomy

Ok, I’ll admit that the title of this article is slightly misleading. But only slightly. I now have a double mastectomy but it took 22 years from first diagnosis and 4 bouts of breast cancer to get there. I never did choose a double mastectomy. It just kind of happened when I had exhausted all other treatment options.

When people hear that I am a 4 time survivor, they shake their heads and wonder why I didn’t have a double mastectomy when I was first diagnosed with cancer. The reasons for the decisions I made were partly historical, partly personal choice, and partly based on the medical advice I received at the time.

Historical and Medical Reasons

My first diagnosis of breast cancer was in 1988. This was at a time where women’s health advocates had been fighting for years to provide women with breast conserving options after many decades of the standard treatment being the Halstead radical mastectomy. This operation bears little resemblance to today’s mastectomies as all the chest muscles and structure were removed along with the breast, leaving a large hollow on that side of the chest. By all accounts, this was a horribly disfiguring surgery that almost guaranteed the patient life long problems with the arm on the side where the breast had been removed. The 1980’s brought in a new surgery – the lumpectomy – which removed the tumour and a wide area around it which allowed women to keep part or most of their breast, depending on the size of the tumour and the size of the breast. The removal of a big tumour in a small breast would be much more disfiguring than the removal of a small tumour in a big breast. Lumpectomy combined with 6 weeks of radiation treatment was found to have comparable results for mortality and reoccurrence as a full mastectomy (removal of breast with chest muscles left intact). These same statistics hold true today, except for women like me who have a genetically based cancer. The prevailing mood of the times was that the lumpectomy and radiation regime was a huge step forward for women taking back control of their bodies from the male dominated medical profession.

The knowledge base in the 1980’s was much more limited than it is today. Today we recognize at least 5 major types of cancer: lobular, inflammatory, hormone positive, herceptin positive, and triple negative, the type that I have. In 1988, herceptin had not been discovered and without knowledge of its existence, there was no category for triple negative cancer as the triple means the cancer is not fueled by the hormones estrogen and progesterone nor by herceptin. It is now often said that triple negative cancer is the most aggressive cancer but in 1988, all that could be said was that my cancer was not caused by hormones. We now know that the prescence of triple negative cancer in a young person often leads to the conclusion that the cancer is hereditary in nature. I was diagnosed at 29. The average age for breast cancer patients is 55-60.                
             
There was no genetic testing for breast cancer as there is today. There was the knowledge that having a family history of the disease was a risk factor but there was as yet no proof that some cancers were due to a genetic mutation in the BRCA1 or BRCA2 genes. A family history was just one of many risk factors that could make a person more likely to get breast cancer, no more or less significant than failing to have a pregnancy before 20, failing to have breast fed a baby, or having an early start to menstruation. I had all of these factors working against me so while the doctors noted my young age as being unusual for this disease, the combination of all my risk factors provided some explanation. My young age in itself did not set off any warning bells as it would today.

I was given the option of either a single mastectomy or a lumpectomy with radiation. No one would have even considered suggesting a double mastectomy as the other breast was seemingly healthy. Why cut off a perfectly healthy body part in a 29 year old woman? It was pretty much assumed by the doctors that I would go the lumpectomy route as I was a young unmarried woman with no significant other and no children. I did agree to meet with a plastic surgeon to see how they could reconstruct my breast if I chose a single mastectomy. Let’s just say reconstruction surgery has progressed tremendously in the last 25 years. Looking through the book of photos that the plastic surgeon proudly showed me,  I was appalled and horrified at the results. Thanks but no thanks! I”ll have the lumpectomy if you don’t mind. Doctors, family, and friends all assured me I’d made the right decision.

I stayed healthy and was cancer free until I went in for my 5 year check-up. I always thought that if you made it to 5 years, your cancer was cured. Unfortunately, another lump was found in the same breast. Lumpectomy was no longer an option as you can only have radiation treatment on the same breast once. My only option this time was a mastectomy and 9 months of chemotherapy. I was 34 when I had a mastectomy on my left breast. The pathology report again said I had hormone negative cancer but it was much more aggressive than the first tumour had been. The pathogists concluded that this wasn’t a recurrence of the first cancer but was a brand new primary cancer. I was told that even if I’d had a mastectomy at 29, I still would have gotten cancer again 5 years later. Again, no one suggested a double mastectomy as triple negative cancer still hadn’t been discovered and genetic testing wasn’t available.

Two years later at 36, a mammogram of my right breast showed a tiny cancer that was too small to be felt. Having breast cancer 3 times in 7 years at my age was highly unusual but my family doctor was the only one to push me towards a second mastectomy. Genetic testing was now just becoming available so I agreed to having a lumpectomy immediately and would have a second operation for a mastectomy if I was found to have a genetic cancer. The type of genetic testing that was available at the time only looked for the wrong “lettering” in the parts of the BRCA 1 and 2 genes that had been decoded to date. In other words, if the code was supposed to be ” “abcd” and your code read “abcf”, the test would catch it and would compare your code with others with the same lettering to see if it had been linked with breast cancer. They did find one wrong letter in my coding but it was of “unknown significance” (and still is 18 years later) as there weren’t enough people with this particular variation to determine if it was associated with breast cancer or not. I was basically told that unless I heard otherwise, to assume I did not have a hereditary cancer. The doctors called it a new primary cancer as it was in the other breast but assured me that as it was caught so early, the likelihood of recurrence or metastisis was miniscule.   (We now know that early detection doesn’t always work that way and many people do have recurrences and metastasis even when caught at such an early stage). So the breast stayed after a lumpectomy and another 6 week stint of radiation.

I was cancer free for the next 16 years, only going for yearly mammograms. I felt pretty damn safe after all that time. Cancer was a thing of the past, something I had seemingly outgrown. But in 2011, the mammogram
picked up some calcifications in my right breast that were highly suspicious for cancer. I had my second mastectomy in 2011 followed by a different type of chemotherapy than I had when I was 34. It was at this time that I learned I was having my fourth battle with triple negative cancer. The pathologists had retested the old tumours to come up with this finding. They saw that each cancer was progressively more aggressive than the one before. The pathologists are divided as to whether this was my fourth new primary cancer or if this was a recurrence with the previous cancer cells hiding and evolving in my body for 16 years. I was urged to be genetically retested as the tests could now also look for things other than rearrangement of the coding letters. The retest showed that I was missing a large portion of genetic material at the end of my BRCA1 gene. The genetic counsellor described it as being like a book with the last 4 chapters ripped out. It took 22 years to learn I had genetic triple negative breast cancer. The deletion in my BRCA1 gene also put me at a high risk of getting ovarian cancer so after chemotherapy was over, I had my ovaries and tubes removed as a preventive measure. Just as having a mastectomy does not guarantee you won’t get breast cancer again either in the scar tissue or metastisized to some other organ, ovary removal does not mean you can’t get cancer where your ovaries used to be. But I’m keeping my fingers crossed that 4 bouts of cancer are enough for one person!

Personal Reasons

My first three cancers occurred in my 20’s and 30’s. While there were support groups available, I never met anyone who was even remotely close to me in age. I thought I was the only one my age going through this. I was single, trying to re-enter the dating market, and couldn’t imagine doing so without a breast. (After all, who wants to date the only 29 year old woman in the world without a breast?) The reconstruction pictures I saw at 29 were frightening and the actual reconstruction I got at 34 was even worse. I was not anxious to do the whole thing over again at 36 when it was such a tiny cancer that had been caught early. And by 36, I had done my due diligence, gone for genetic testing, and had been cleared for hereditary cancer. Coupled with that, my mother had a lumpectomy without radiation in 1980 and her breast cancer never came back. By the time of my first cancer diagnosis, she had not only survived breast cancer, but she had also battled ovarian cancer 3 years earlier. By the time of my second cancer, she was dead from her second bout of colon cancer but her breast cancer never came back.

Call me vain and shallow for wanting to keep my breasts as long as I could. That’s okay. It was a different world then. Breast cancer was still stigmatized, I was insecure, I was scared, and I had no idea my genetic make-up predisposed me to having cancer after cancer. My present oncologist believes I still would have had multiple breast cancers even if I had double mastectomies back in 1988 as like my mother, I get new primaries not recurrences.

I try to imagine what I would have done had medical science been more advanced, had complete genetic testing been available, and had I been living in a world of online support groups for young women. A world like today where breast cancer is fully mainstream and there is a whole month of the year dedicated to raising awareness of the disease. Would I have done things differently? Maybe, but I don’t know for sure. Even if all my choices were wrong, breast cancer is such a crap shoot that I find myself still alive and kicking 25 years later while so many others who did everything right are dead. Breast cancer isn’t just or fair. I carry my fair share of survivor’s guilt but that is a topic for a whole other post.

Sharon Greene November 5, 2014

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About Me

About Me.