Soon after I received the news of my cancer recurrence, I made a decision. A few weeks in, I began to realize how different this was the second time around--especially for breast cancer. There is so much hype and publicity over breast cancer, and yet it all has a vague familiarity to it--it is all about fighting and winning, kicking cancer's ass, being a warrior, hope and love and pink. So what happens when you do everything that was asked of you, and you have a few years of normalcy, and then the shit hits the fan again anyway? Well, one thing that happens is that you no longer fit neatly into society's notion of what it means to be a "cancer survivor." The whole concept of surviving gets turned on a dime; you stop thinking about cancerversaries and being done with chemo and being afraid that cancer might return and suddenly, cancer is a thing that you have to deal with on a long term basis. You start to think that cancer might never leave you alone. People treat you differently than they did the first time--there is more fear and sadness, but also more resignation and disbelief. Because of this, I decided that I would ask women who had had local recurrences (mets is a whole other story--and deserving of its own storytelling series) to send me their stories, under the guise of the Baby Elephant Project.
I named it this because I feel that we are the elephant in the room, though we are the baby elephant in comparison to the mama elephant of mets. We are the thing other survivors fear, we are the reality it is hard for our loved ones to accept. We are the ones who tried, who really, really tried, to beat cancer--but we didn't necessarily "win." I had plans to do more with this, and that is still on the agenda. Would it be a book, or a separate blog? I had grand ideas--and then reality hit me, and I was starting a new job based out of state at the same time that I was starting 6 months of chemo and my kids were starting school. One of the women who sent in some responses found out she had mets. I haven't found time to connect with everyone. This project is far from over. Today I am making a contribution to breast cancer awareness month by publishing the first in the Baby Elephant Series. Please read the story of Sharon Greene, a 4 time survivor of triple negative breast cancer. I fixed a few typos and did some formatting and light editing, but otherwise, this story is hers and hers alone, in her voice, in the way she chose to tell it in response to a handful of very simple questions that I asked of her. Thanks, Baby (elephant).
I have had triple negative breast cancer 4 times in 23 years. It has now been 25 years since my first diagnosis. Although I had BRCA testing in the 90's, my particular mutation wasn't one they were looking for. It wasn't until I was re-tested in 2011 after cancer 4 that they found the last 4 segments of my BRCA1 gene were blank or just weren't there. Since learning of my BRCA1 status, I've had my ovaries and tubes removed to lower my risks of ovarian cancer.
I read a study recently about long term survival in breast cancer patients. Most studies don't go beyond the 10 year mark. This study took a look at survival rates from 1988, the year of my first diagnosis, to the present, and only 15 percent of us are still alive. Now this study wasn't implying that all these people died of cancer. I imagine there were a number of elderly women in there who died of old age as they would have normally, even without the breast cancer. Still 15 percent survival to the 25 year mark are not the kind of stats that the pink ribbon crowd want you to see. It also made me wonder at my own fortune for being one of the 15 percent instead of one of the 85 percent.
Even though I have a family history of breast, ovarian, and 2 different types of colon cancer and even though I am BRCA1 positive with 4 triple negative breast cancers behind me, my cancers were for the most part caught relatively early. I found the first cancer myself and had I been more on the ball, I would have caught the others myself too. Instead cancers 2 – 4 were all mammogram finds. Maybe I am a poster child for the pink ribbon's early detection program after all.
The first cancer at 29 came as a complete surprise to me. Although my mother had battled breast and ovarian cancer in the decade prior to my diagnosis, she had been in her 50's both times while I was so much younger. In the pre-internet days of 1988, I brought home every library book on breast cancer I could find. It was described as a disease of older women. I did not meet or hear of any other women my own age with breast cancer. I felt isolated and very alone. Although I had a lumpectomy and not a mastectomy, I had just broken up with my long time boyfriend and couldn't imagine re-entering the dating world with half a breast. How do you casually slide that little tidbit in the conversation? I had recently graduated from law school, completed a grueling year of articles (internship for lawyers in Canada), and was now unemployed. I didn't know how I was going to explain this gap in my resume without having to tell the cancer story. I did not want to tell anyone the cancer story. I was embarrassed and ashamed to have this old lady's disease and this disfigured body. Along with the lumpectomy, they removed each and every lymph node under my left armpit. All were clear. This was followed by 6 weeks of radiation treatment that left me tired and burned.
Once treatment was over, I dated a guy my age I found in a cancer support group. He was missing a testicle, I was missing half a breast. It should have been a match made in heaven. It wasn't, but he helped to make the transition back to dating again. I found employment and for the next 5 years, life went back to a kind of normalcy.
At about the 4.5 year mark, one of my mother's cancers metastasized into her liver and was incurable. She was given 6-9 months to live. About 6 weeks later, she was hospitalized for the last time. I spent the next 17 days at her bedside, watching her deteriorate day by day, but still refusing to die. I stepped out for about an hour, and she passed away when I was gone. I was devastated as we had been very close. I was an only child, estranged from my father, and felt like an orphan at 33.
I had been slowly building up a solitary drinking pattern since my first breast cancer. It accelerated after my mother's death to the point where my employers staged an intervention and sent me off to a 28 day treatment program. There I met a man trying to kick his cocaine habit. When we both graduated from treatment, we began dating. We became close early on when I broke the ankle on my driving foot and had trouble navigating around on crutches. He came over one night and never left, unofficially moving in.
I was starting to get my life back on track and about an hour before my 5th year mammogram, I was told about a new position at work. I remember leaving the meeting, saying I'd be back in an hour, as I just had a routine mammogram to attend.
There was nothing routine about this mammogram. They took pictures. Then they took more pictures. Then more and more people started entering the room to look at the pictures. A doctor came along and did a breast exam and pointed out a large mass in the same place the first cancer had been. It was pretty clear to me that the cancer was back. It was surprising to me that I had missed a lump so big but then again, it did not show up at all on the mammogram taken 6 months earlier.
Things seemed to move very fast this time around. I was told mastectomy was the only treatment option as you couldn't radiate the same breast twice. I was sent to a plastic surgeon and looked at horrifying pictures of reconstruction (plastic surgery has come a long way in 20 years). I finally decided on having my back muscle moved to form a breast with an implant added for size. At this particular time, silicone implants were banned, even for breast cancer patients. The only implants available were saline implants that rippled and created a breast shaped like a flattened pancake. It was extremely ugly. Even doctors and nurses at the Cancer Clinic suggested I go back and have it somehow fixed. The plastic surgeon seemed to think he had done a fine job and there was nothing to fix.
This had been a rollercoaster 6 month period with my mother's death in November, a stint in rehab in April, a broken ankle in May, and a cancer diagnosis in June at my 5 year "cure" appointment.
I was still mourning my mother and trying to deal with life as a newly sober person. I was in a fragile emotional state and did not want to lose my breast at 34. I cried all the way to the hospital, still wearing the cast from my broken ankle. I had the surgery with the immediate reconstruction followed by 9 months of chemotherapy. I went into the hospital depressed and came out even lower. I have been told that I continually cried out for my mother the night of my mastectomy.
Although people from work were supportive, I felt very much alone. The boyfriend was my sole day to day caregiver. The boyfriend soon showed his true colors when I got a call from the credit card company advising that my card had been used to buy hundreds of dollars worth of cigarettes during my hospitalization. As my credit card was still in my purse, it was clear the boyfriend did it. I was at such an emotionally low point in my life that I let him stay so I could have someone to "take care of me". I later learned that I was showing all the signs of severe clinical depression but it went untreated.
The chemotherapy I had caused severe mouth sores and some nausea but I didn't lose my hair. I was told that the chemo may push me into early menopause but my periods came back shortly after the treatment stopped. I was grateful that I had seemingly escaped this long term side effect. I was told by the oncologist not to get pregnant for 5 years after chemo as that might bring the cancer back. When I questioned why I had to wait 5 years when both cancers were hormone negative, I was told that my baby might not have a mommy as I might be dead. More depression followed this announcement.
I was also told that this was not a recurrence but a new primary breast cancer. They knew this as my first cancer type was medullary and the second was the more usual adenocarcinoma. The fact that both cancers were in the same spot was put down to mere coincidence.
Meanwhile on the home front, it became clear that the boyfriend had relapsed into his cocaine addiction. I remained sober for the first 2 months after the surgery and then finally broke down after my first chemo and asked to try some cocaine so I could see what the big deal was all about. I tried it and I liked it. Cocaine became a regular part of my world until the 9 months of chemo were over. At some point very early on I knew I was engaged in self destructive behavior but I really didn't care if I lived or died. Part of me wanted to die to be with my mother. Another part of me obviously wanted to live as I kept going to my chemotherapy appointments. Once it became clear that I was going to live, I kicked out the boyfriend, voluntarily went to a women's only drug treatment center, and started seeing a psychiatrist to grieve my losses. I took antidepressants to tackle my depression and feelings of anxiety. I have now been sober for 19 years and am grateful to all those who assisted me along the way.
This period of my life still causes me great shame even 20 years after the fact. I think of others who did everything in their power to keep their cancer from coming back, from changing their whole diet to taking all kinds of alternative treatments, doing anything to stay alive. I on the other hand was extremely careless about my health, not even caring if the cancer took over or not. I feel guilty for all those people who died while doing everything right while I lived while doing everything wrong. When people compliment me for being so brave and courageous in fighting cancer 4 times, I just have to flashback to cancer 2 to see how utterly unheroic I really was.
I didn't stay cancer free for long. About a year after I finished chemotherapy, a mammogram found a tiny spot in the remaining right breast. It was too small to be felt and the lumpectomy had to be done after a wire was inserted in the spot shown by the mammogram. Once again, all my lymph nodes were removed and all were clear. This was again followed up by 6 weeks of radiation.
When you have your lymph nodes removed on one side, you are not supposed to have needles or blood pressure cuffs on that arm for fear of lymphedema. When lymph nodes are removed from both sides, all those warnings go out the window. They don't tell you to protect both arms and use some other body part for these medical procedures. Instead you are told to use whichever arm you want and it will all be okay. Luckily for me, all was okay and I never had any symptoms of lymphedema.
With cancer 3, the people at my workplace were much less supportive than they had been before. I had barely returned to work after cancer 2 and now I was leaving again for cancer 3. Even medical personnel were taken aback when I said that it was my third breast cancer, not my first. Their reactions were a mix of disbelief, awe, and horror that someone at my age could be going through this for the third time. I had the same reaction from other breast cancer patients I met while waiting for radiation. Hearing that this was my second time having radiation and that I had a mastectomy 5 years after my first cancer, the reactions were mostly along the lines of "Wow! What a fighter!" while clutching their gowns closer to themselves and shrinking away slightly, as if they too might catch cancer again by sitting too close to me. For people facing their first cancer, I was an unpleasant reminder that it could reoccur and later spread to the other breast. By this time, the pink ribbon message was everywhere with its promises that early detection equaled cure. People like me just didn't fit in this rosy view of breast cancer, where no one dies or gets sick again once they have "survived" for 5 years and been "cured".
This time, I did have emotional support from the man who was soon to be my husband. I didn't have an emotional breakdown this time. We in fact bought a puppy once the surgery was finished, to symbolize a new long life together. The lumpectomy left a small scar but was otherwise barely noticeable. The oncologist this time said that the 5 year ban on pregnancy was no longer being followed and since I was now 36, I had better start moving on that front as I wasn't getting any younger.
We were married and tried getting pregnant the natural way without success. We were soon referred to a fertility clinic as I was concerned the chemotherapy had made me infertile. The doctors couldn't find anything wrong with me but determined that my husband's sperm quality was poor. They said our only chance of getting pregnant was by a special kind of IVF where they would pick out the very best sperm and directly implant it into my eggs. The concern arose as to what to do about giving me high doses of hormones when I had 3 bouts of breast cancer in the last 7 years. They consulted with the Cancer Clinic who basically said they had no data on someone like me using IVF. They were concerned about the hormones but could not say for certain that this treatment would lead to further cancer. We took this as a yes to go ahead with the fertility treatments.
Before we started, I was told that a woman my age was expected to produce between 12 - 18 eggs. The first time around I produced 2. The pregnancies didn't take. The second time, I produced one egg and once again didn't get pregnant. It seemed that chemotherapy did indeed impair my fertility. Although I did resume my periods after chemo, I definitely was in menopause by 45, some 10 years earlier than my mother. I am assuming from the early menopause that by the time we tried IVF, my body and my egg supply were not comparable to others my age. They were all physiologically older than my chronological age.
We next tried the adoption route. We had to do an extensive home study covering all areas of our lives, including medical history. The social worker was very concerned about my medical history and required a doctor's letter basically guaranteeing I wouldn't get cancer again. Although no doctor can make such a guarantee, my doctor came very close to promising I'd never get cancer again. Somehow we were approved for adoption and adopted a boy and then 16 months later, a girl, both from Chicago. For reasons unrelated to breast cancer, my marriage imploded when the children were 22 months and 6 months old. I have been a single mother since then. My children are now 12 and 13 years old.
For 16 years, it seemed as if the doctor's letter had indeed guaranteed my health as I stayed cancer free. In April, 2011 I went for a routine mammogram. All seemed well and I was sent on my way. 2 days later, I received a call to come in the next day for a diagnostic mammogram. I knew this wasn't routine and the old familiar dread took over. I had pictures taken and retaken until I finally said I wanted to speak to the radiologist. He came in, not once looking me in the eye, literally staring at his feet through the whole conversation. I said I'd had breast cancer 3 times before and I wanted to know if it was back again. He said there was a strong likelihood that I had cancer for the 4th time. I was sent for an ultrasound and the technician couldn't seem to find the lump. I couldn't find the lump despite being told where to find it. I went to a breast surgeon who also couldn't find the lump. The earliest she could do a biopsy was 2 months away. I couldn't wait in suspense that long so found another surgeon with a clearer schedule. The biopsy found that the tumor was deep inside my breast which was why it couldn't be felt. It was indeed cancer and I was sent off to a new plastic surgeon to consider my options.
Once again I opted for the back muscle with implant procedure. Although I had gotten my first reconstruction fixed a number of years earlier by substituting a silicone implant for the saline one, that breast was ugly again as the implant had become encapsulated. The plastic surgeon was not prepared to deal with 2 problems at once and wasn't sure if the left side could ever be fixed as he was afraid the whole breast would collapse.
In the 16 years that had passed between cancers, some things had changed a lot. Whereas with my earlier cancers it was about 2 -3 weeks from finding the lump to the time of surgery, this time it was closer to 3 long stress inducing months. And where I was once kept in the hospital for about 3 days after a lumpectomy and node removal, I was told that it would be one night with just a mastectomy and 2 nights if I also had immediate reconstruction. As the single Mom of a 10 and 11 year old and being the owner of 2 big dogs who think they are lap dogs, I panicked as to how I would cope. The doctors somehow worked it out so I spent 5 nights in the hospital which was a huge blessing.
The tumor which everyone expected to be very small, turned out to be 2.7 cm. Once again, it was triple negative, grade 3 making it the most aggressive cancer around. The pathologists disagreed as to whether this was a recurrence or a new primary. It had either been silently lurking for 16 years or it was a brand new cancer that emerged after a long remission. In the end, the treatment was the same - 4 sessions of chemo with cytoxan and docetaxol. This time, I would lose all my hair and would be sicker than with my first chemo as it was a stronger drug combination.
How did I feel about this recurrence/new primary? I felt stunned as I thought 16 cancer free years meant I was finally cured. I also felt emotionally tired from the time of the mammograms to the end of treatment. I didn't think I had the mental stamina to be a sick person for 9 months to a year for the fourth time. I was tired of cancer and just didn't want to do it anymore. Finally, it was different this time around with 2 young children to think about. My first concern was how I'd take care of them when I was sick with chemo when I had no one to take care of me. My bigger concern was what would happen to them if I died. Their father had remarried and showed little interest in them since he left the home.
We somehow muddled through these issues. I got very ill a week after my first chemo with a high temperature that resulted in a 4 day hospitalization as my white blood cells were registering zero. The ex-husband did take the kids and dogs during that period and never let me forget what a big favor he had done for me. My daughter managed to have a headache or stomach ache during all my doctor days or chemo appointments and because of her young age, accompanied me to almost all of them. She became very clingy and never wanted to leave my side. My son took the opposite route by pretending it wasn't really happening. My little chemo hats and scarves bothered him considerably. He would have been happier if I wore a wig 24 hours a day, even to bed.
I had taken the BRCA tests sometime in the late 90's when it first came out. I was found to have a variation of unknown significance but nothing that was positive for the BRCA mutations they were looking for then. With cancer 4, I was retested as more of the genes had been mapped out. I was found to have a major BRCA1 mutation, with the last 4 axons or sections of the gene blank or missing. As I was now at an increased risk of ovarian cancer, I had further preventative surgery by having my ovaries and tubes removed.
I still have not gone for the exchange surgery to finish my right breast reconstruction. I am not sure why I am dragging my feet on this one other than to say that I am not in a hurry for further surgery.
What does cancer mean to me? Its a disease I can't seem to ever be rid of although luckily it has never attacked anything but my breasts. Do I think I have seen the end of it now that I no longer have breasts or ovaries to attack? Honestly, no. My mother had 4 different types of cancers in a 12 year period. Her cancers started later than mine at the age of 50. I have been extremely fortunate so far that none of my cancers have metastasized. Will my luck hold out forever? I really doubt it. What do I feel about the term survivor? Having had breast cancer 4 times over 23 years and not dying or developing mets, I think that word fairly describes my experience. It is better than the alternatives - victim, patient, or thriver. I don't think of myself as brave or courageous, merely lucky not to have developed mets or died. I am not the poster girl for how to survive cancer long term. I didn't change my diet or take special supplements or become a marathon runner to reduce my cancer risks. I don't know why I am still alive when so many other more worthy people have died. I am a fatalist. It just wasn't my time to go I guess.