Category Archives: Recurrences

How the BRCA1 Gene Devastated a Small Family (Mine)


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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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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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Goodbye Pinktober… see you next year.


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Goodbye October with its pink ribbons, pink merchandise, and silly pink uniformed  athletes. The color pink in October symbolizes breast cancer awareness month. Some people run races for “the cure” while others buy pink trinkets that promise to donate some (tiny) portion of the purchase price to an unspecified breast cancer charity.

There is a lot of controversy about Pinktober in the breast cancer community. Many survivors hate it as all the money spent on “going pink” translates into very little money spent on actual breast cancer research for better lives, better treatment, or an actual cure for the disease. After the merchants and the big cancer charities take their cut of the profits and donations, the little money left goes to promoting breast cancer awareness and to organizing more pinktober races and events for the next year. I think it is safe to say that the majority of the nation is already very aware that breast cancer exists. They may not be aware that early detection and yearly mammograms do not always save lives. Some 30-40% of us continue to die of the disease. There is nothing pretty or pink about any kind of death from cancer.

When I was first diagnosed with breast cancer at 29 in the Dark Ages of 1988, Pinktober didn’t exist. Neither did the internet with its information and support groups. It was still seen as an old ladies’ disease and at 29, I had no sense of community with others in my age group that were fighting this disease. I would have loved a pink ribbon and people running races on my behalf. Pinktober did what it set out to do and took breast cancer out of the closet and into the light.

But with that goal accomplished, Pinktober has turned into a massively commercial operation, a lumbering elephant, that exists with no clear purpose anymore. Instead of going pink, try donating directly to Metavivor, one of the few breast cancer charities that actually spends all its donation money on research for a cure. Or better yet, if you know someone with breast cancer, offer to drive them for treatments, look after their kids for a few hours, or bring by some groceries or a few home cooked meals. This will do more to support those living with the disease than all the pink ribbons or Save the Tatas teeshirts you can buy.

Happy November everyone! No more pink for another year. Thank God.

Sharon Greene November 3, 2014

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