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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