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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A Letter To My 29 Year Old Self

Dear Sharon,

I am here with you on this February morning of 1988, watching you sleep. I am taken aback not just by your youthful appearance but by a look on your face I haven’t seen in years. Even in sleep, your face shows a look of optimism and blind faith that everything in your life will turn out alright.  You still innocently believe that the universe is a fair and orderly place where good people are rewarded and bad people are punished. I wonder if this is the last time you will ever look like this or if it takes a few more days or weeks for that innocence to disappear forever.                                                   

You think you are going through a rough patch right now due to recent personal losses. By the time this day is over, the break-up with your boyfriend and the lay-off from your job will be the least of your worries

Your big plan for the morning is to get onto the typewriter and prepare cover letters for your resume so you can end this spell of unemployment. But your plans are about to change in four…three…two…one. Good! You are awake. Time to stretch your arms overhead and accidentally touch your left breast. Ah…do you feel it?

You have had lumps and bumps in your breasts before but this one feels somehow different. You touch it again, this time deliberately, and then touch the other breast for comparison’s sake. There is nothing at all similar anywhere else in either breast. Watching your face, I see your eyes grow wider and a mixture of fear and confusion crosses your face.                                                               

I watch you hesitate and then reach for your address book that contains your doctor’s phone number. I watch you talking to the receptionist and see the surprise in your face when she tells you there has been a cancellation and the doctor can see you in an hour.

There is no time to think. You are still telling yourself that you are bothering the doctor over nothing. Everyone knows 29 year olds don’t get breast cancer. They don’t get breast cancer at 29 even if their mother battled both breast and ovarian cancer in the last decade. Breast cancer is for menopausal women not young women in their 20’s. Part of you wants to call the office back to cancel the appointment. I am here to whisper to you that this is one appointment you must keep. Not really knowing why, you find yourself at the doctor’s office waiting to be examined.

The doctor said it will probably just be a cyst but given your family history, it is good that you came to have it checked out. You note the doctor’s smiling face turn into a frown as she feels the lump for herself. There is a hospital across the street from her office and she makes arrangements for you to see a breast surgeon that very afternoon. She explains that he will try to drain the lump with a needle and if it is a fluid filled cyst, it will collapse and that will be the end of the matter.  You notice that she is smiling too brightly and talking a bit too fast.  

I see the shadows of fear and doubt starting to take root on your face. As much as I would like to tell you that everything will be okay, I know how this part of the story ends. I can only whisper to you again that this is yet another appointment you can’t afford to miss.

I can read your thoughts. You feel like time is moving way too fast. The day’s events are hurtling forward like an out of control train on a too short track. You cross the street and wait to see the breast surgeon. You wonder what it feels like to have a needle stuck in your breast.

You don’t have long to wonder. You are disrobing yet again and having your second breast examination of the day. Once again you see the doctor frown when his hand examines your lump. He takes out a needle and thrusts it into your breast. When he withdraws it, you note that it is not filled with fluid. It is not a cyst. It is solid. Just watching you, I can see the anxiety solidifying on your face and I can almost feel your stomach dropping in fear.

You are sent to another floor for your first mammogram. It hurts, particularly after just having been subjected to the needle. When you return to the surgeon’s office, he tells you a surgical biopsy will be required to tell if it is benign or cancerous. There is a deadly silence after the cancer word is spoken. You find yourself asking the doctor what he thinks it is. As soon as you say those words aloud, you want to take them back. You don’t want to hear his answer.

He tells you only a biopsy can truly determine if it is cancerous but then adds that the physical exam and the mammogram are highly suggestive of a malignant tumor. You don’t hear a word he says after that although you do manage to stumble to the receptionist’s desk to book a biopsy appointment in a few days time.

You slowly walk back towards your apartment, unaware of the tears flowing down your cheeks. A random man calls out to you not to cry, no guy is worth your tears. This makes you cry harder and you race home to avoid any further attention. All you want is to talk to your Mom and have her hold you. She lives 500 miles away so a long distance call will have to do. I look closely at your face. Your eyes have the startled look of a deer caught in the headlights. The blind faith optimism has vanished from your face, never to return again.  You know you have breast cancer even though it hasn’t been officially diagnosed yet. You want to know what happens next, how you will ever go on.

I came from the future to answer your questions and reassure you that there will still be good times ahead. But how can I tell you that this won’t be your last cancer? How do I say that it will come back again and again and again? Even I don’t know the final ending to our story. I look at your shattered face and do not think you could handle the news of all the challenges that lie ahead of you. It will be easier for you to just live and survive them one by one the way I did.

So I will rip up this letter I have been writing to you as I think it would do more harm than good. I wish there was some way to let you know that there is happiness ahead as well as pain but I can’t tell you about one without telling you about the other. I would love to restore the unthinking optimism to your face but I know it is gone for good. For us, the universe is a disorderly random place where bad things can happen to good people.  Just know that you are going to live at least 26 more years and that you will get to be a mother to 2 children you will love very much. It is going to take a very long time for you to come to peaceful terms with yourself but I guarantee it will happen.

Good-bye for now old friend. Please forget I ever was here whispering in your ear. Just know my whispers saved your life this time.

Sharon Greene  January 8, 2015
Age 56

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Making Themes Not Resolutions For 2015

                                                                    

Having made and promptly broken every resolution made for New Years in the  past, I’m trying something different this year. I have decided to pick 2 keywords as my themes for the year which will hopefully guide my actions in the 12 months ahead.

The words I have chosen for 2015 are “create” and “giving”.  I want to build up and not tear down. I would like to make something new, whether it is a new blog post, an article written out of my comfort zone, an e-book, or building a sense of community in my online and virtual worlds. I want to share my experiences more transparently and honestly in the hopes that even one reader will say to herself, “hey, I’m not alone feeling this way”. As I wrote in an earlier post, The Winning Ticket, I want to give back to my community, not keep taking from it. In terms of this blog, I want to create a safe place where we can exchange our stories freely, offer much needed emotional support to each other, and not worry if our stories do not resemble the”official” one of happy smiling pink-suited survivors.

As far as giving back or paying it forward, I would like to be even more candid about sharing my experiences with having triple negative breast cancer 4 Times. While I am not a doctor and can’t offer medical advice, I have almost 27 years of personal experience with this disease. I have gained a certain amount of knowledge about breast cancer and recurrences/new primaries as well as living with a BRCA1 positive gene during this time.

There was a recent post called Breast Cancer: It Is Going To Be A Bumpy Ride where I danced around the topic of whether or not I personally suffered from PTSD.  Some readers figured it out while others didn’t. Yes, I have had depression, anxiety, panic attacks and flashbacks for years but was not properly diagnosed with PTSD until 6 weeks ago. Since then, a new medication has been added to my antidepressant and anti-anxiety cocktail and I am feeling lighter than I have in years. So why did I not just come out and say that in the post? Was I so afraid of labels about my mental health that I felt a need to detach myself from this particular diagnosis?  If nothing else, I would like to turn my negative experiences into something positive that others can relate to and realize they are not alone. I have had the symptoms for PTSD for many years and now with the official diagnosis, it is finally being appropriately treated. I feel better! And that is nothing to be embarrassed or ashamed of for any cancer survivor.

I hope my themes work better than my resolutions ever did. What about you?  Are you making New Year’s resolutions or goals or themes? Why or why not? If you are comfortable doing so, please share these or any other concerns in the comments.

Have a Happy healthy joyous 2015!

                                                                                                                                                                                                            Together we can accomplish anything!
                                                           
   

            

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Sharon Greene December 31, 2014

Am I Doing Breast Cancer Right?

I have been reading about breast cancer prevention and cures since my mother was diagnosed with the disease in 1980. I picked up the pace with my own first diagnosis in 1988. Some “facts” and some trends have come and gone while others are repackaged with new names 20 years later. If you believed and tried to follow all the advice floating around the internet, you would soon drive yourself crazy. Even the experts get it wrong sometimes.

In the 70’s to the mid 80’s, the alternative cure of the day was laetrile, a compound made from apricot pits. People travelled to Mexico for this wonder cure that wasn’t available in Canada or the US. It went out of fashion as it didn’t seem to actually cure anyone and led to their early death if they were not using traditional medicine alongside it.

The next big wave of prevention and cure methods focused on the mind. Guided visualization was the rage in the late 80’s and early 90’s. Basically it was a type of meditation where you listened to a tape that encouraged you to picture your cancer as weak disorganized blobs while the strong army of chemotherapy warriors came down and slaughtered them all. The premise was that your mind could cure your cancer through these vivid images. Unfortunately for me, these images were anything but calming and empowering. I began having nightmares of raging armies chasing after me, trying to kill me. I stopped going to these “healing” sessions and felt much better for it. This was cancer failure number 1. I was a guided visualization student drop-out.

The other component to preventing or curing cancer with your mind was developing a uniformly positive attitude towards life. There was some research being cited that said optimistic cancer patients lived longer and had less recurrences and metastisies than pessimistic patients. Further research has not been able to duplicate those results.  It is now thought that a positive outlook may increase your quality of life but it won’t prevent further disease or lengthen your stay here on Earth. But at the time of my
first cancer in 1988, the positive thinking rule was firmly in place.

I wasn’t a uniformly positive person.  I was sad, angry, scared, confused and frustrated with both the disease and the effects it had on my life. Hearing that I had to remain positive at all costs did nothing but add another layer of guilt to my emotions when I found I did not always feel happy.  Now I was suddenly responsible for causing my cancer in the first place by thinking negative thoughts and would be responsible for any recurrences or metastasis that later arose.  I did not find that knowledge particularly empowering or encouraging.  That was cancer failure number 2, being more of an Anxious Annie than a Perky Penny.

My mother battled 4 types of cancer in 12 years and managed to remain optimistic under the most dire of  circumstances. She died after that 12 year battle, still visualizing until the end.  I thought that if the most positive person I have ever known could get 4 different cancers and die from the disease, what hope is there for someone like me? But at the same time, I started to get the nagging feeling that maybe, just maybe, it was the theory that was wrong and that the experts didn’t always know as much as they thought they did.

I tested this theory on my breast cancer surgeon. He had told me at age 29 (first cancer) and 34 (second cancer found at my 5 year “cure” appointment), that I would have to wait 5 years to get pregnant from the time of each new diagnosis. I asked him why this was given that my cancers were not affected by hormones. He did not give me a scientific answer but he did get me to stop asking him the question. His less than tactful answer was that if I got pregnant now, “Baby may not have a Mommy in 5 years time”. Somewhere in the back of my mind I realized that he didn’t really have an answer to the specific question I posed. His answer told me science knew very little about 29 year old or 34 year old women with hormone negative breast cancer. That made sense as most breast cancer patients are diagnosed with the disease at a much older age when pregnancy isn’t an issue and their cancers are more likely to be hormone positive. That realization was freeing as it taught me to at least question the expert advice I had been given, to do my own research, to ask tough questions, and to make my own decisions. Now that was empowering knowledge!

My suspicions about my surgeon’s lack of answers to the pregnancy question were confirmed 2 years later with cancer number 3. I had a new surgeon and posed the pregnancy question to her.  She said that doctors no longer applied the 5 year pregnancy rule. She said I was 36, had 9 months of chemotherapy, and would likely have early ovarian failure and early menopause. She said if I wanted to get pregnant, I had better do it now before it was too late. Shortly afterwards my then-husband and I found ourselves in a local fertility clinic that had never dealt with women with a past history of breast cancer before. They consulted with my Cancer Clinic about the advisability of my taking fertility hormones. The initial response from the Cancer Clinic was they had never dealt with this situation before and they would have to consult with other oncologists in other areas of the country. The end result was that I had 2 courses of IVF treatment but I didn’t get pregnant. At least I got to try and it all worked out in the end with the adoption of 2 children. Even more importantly, the mega doses of hormones I took during each IVF treatment did not kill me as my first surgeon seemed to think pregnancy hormones would do. Medical science does not know everything. You have to do your own research and make the decisions that are right for you, even if they are not popular at the time.

I have had many more cancer fails over the years. I don’t identify much with what the media seems to portray as the ideal breast cancer survivor. You know the one dressed in pink who talks about how breast cancer changed her life for the better, how treatment was just a small dip in her otherwise perfect life, and how she is now happy, happy, happy that all that bad stuff is behind her because SHE BEAT CANCER. While this may accurately represent some survivors’ realities, it doesn’t represent mine.

I was frightened at each diagnosis. I found surgery painful, radiation exhausting, and chemotherapy nauseating. I haven’t beaten cancer although I hit the 5 year “cure” mark with cancers 1 and 3 only to have it return again. I won’t have beaten breast cancer until I die from some other cause. I worry about leaving my children behind at too young of an age as my mother left me. Cancer failure number 3 – cancer was not the best thing that ever happened to me. And once again, I am not Happy, Happy, Happy all the time. It is the think positive movement all over again, except this time it is wearing a pink track suit and is “running for the cure”.

Many of these examples I have given were from the pre-internet days where you were exposed to a limited number of medical opinions from the Drs. you dealt with and the books or magazine articles you read. Now with a few minutes of googling, you can find a mountain of research and websites giving information on everything from miracle cures by diet and supplements, to using the law of attraction to bring you good health, to the latest advances in medical technology, and to lists of all the clinical trials across the world.

Trends in cancer prevention and cure come and go in the blink of an eye. One day we are supposed to take shark cartilage supplements because sharks don’t get cancer and the next day we are told that logic is just bad science. Last year seemed to be all about not letting your water bottles get warm in the sun and not wearing a cell phone in your bra. This year, it’s all about avoiding sugar, alcohol, and dairy products. When I was first diagnosed with breast cancer, lumpectomy with radiation was the popular treatment of the day. Now the tide has turned and double mastectomy is all the rage. The guided visualization sessions of the 80’s and 90’s are now mindful meditation groups. The more things change, the more they stay the same.

Are you doing breast cancer right?
Is there even a right way to do breast cancer? With so much information available about advances in traditional medicine and on the other side, complementary or alternative treatments, how can a person know what is the right thing to do?  I don’t pretend to have all the answers, but these are some suggestions for sorting the good ideas from the bad.

First, get a copy of all the records and reports that relate to your cancer. The pathology reports will provide information about the kind of tumour you have, it’s hormone status, it’s size, it’s grade and it’s stage. As the treatment varies depending on the kind of breast cancer you have and the stage it was detected at, you need this information to do any meaningful research on your particular cancer. If there are terms in the pathology report you don’t understand, an online medical dictionary is only a click away.

Secondly, ask your doctor lots of questions, even the ones you think are too dumb to say out loud. Write your questions out in advance so you don’t forget to ask something important. Bring a friend, a notebook and a pen, or a tape recorder as you may forget the information you receive, especially if it is in the early days of a cancer diagnosis when you are already feeling overwhelmed.

If you are interested in complementary holistic treatments, ask your doctor if there are any that are available to you at your hospital or clinic. If you are taking holistic supplements, tell your oncologist as some types can interfere with traditional treatments, especially chemotherapy. Contrary to popular belief, there are many oncologists who will support the use of some forms of complementary treatments.  On the other hand, you probably will not find a medical doctor who supports you taking a completely alternative approach instead of one of the traditional forms of medical treatment. Think of Steve Jobs and Farrah Fawcett, two celebrities who tried to cure their cancer in non-traditional ways. What else do they have in common besides their cancer and their celebrity status? They are both dead. Medical science may not have all the answers but it does have ways to prolong life and halt the progression of this deadly disease, at least for awhile.

Third, when doing research, consider the source you are consulting to see if it is reliable and respected. Medical research should be based on controlled scientific studies that can be duplicated by others who will get the same results. “Research” that consists solely of testimonials and celebrity endorsements is not research at all but is usually a scam to get your money. Also be wary of bold statements made in the popular press saying that scientists found this substance causes cancer or that scientists have found using this substance will cure cancer. These headlines are often misleading as the actual studies may have been done on mice or rats and human trials, if they ever get that far, are a decade or more away.

Finally, I would suggest you join a support group, especially a large online one, to pose questions and learn the different approaches being taken across the continent by others living with the same kind of cancer as you. A support group is a great place to find people who can answer your questions of what chemotherapy or radiation are really like from a patient’s perspective rather than from a doctor’s point of view. It is the kind of place where others understand your fears and concerns, having lived them too. It can be a great place for emotional support on the bad days and for congratulations on the good days when you have cleared a treatment hurdle or reached a milestone of any kind.

I no longer think there is a right way or a wrong way to live with, prevent, or treat breast cancer. There are many decisions to be made at every step along the way. You sometimes choose treatments you don’t really want to do because they will prolong your life a little or a lot, but not every decision is of the life and death variety. As so much cancer advice has a very short shelf life, it is really not necessary to jump on every new band wagon that rolls into town. Until science has more definite answers as to why 40% of us die from breast cancer while the other 60% of us do not, follow the tips that make sense to you and leave the rest behind. They will all be forgotten anyway when the next hot tip of the day comes around.

Sharon Greene November 11, 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

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