Collateral Damage

Dr. Susan Love published an interview on Medscape last week on the “collateral damage” of breast cancer treatments as reported by 3200 actual patients and not their doctors. She noted that doctors and patients often view things differently. For doctors, a living patient is the major sign of successful treatment. They don’t want to hear about treatment side effects that they can’t treat and cure, she says.

The patients and survivors are also happy to be alive but their quality of life may be severely impaired by chemo brain, depression, anxiety, fatigue, neuropathy, and hot flashes. She calls this collateral damage rather than side effects as often these symptoms are permanent, not temporary. She doesn’t mention breasts disfigured through lumpectomy and radiation, having no. breasts at all through mastectomy, or having a bad or failed reconstruction job. Presumably, these are just the regular damage to be anticipated from breast cancer treatment.

She reports that many survivors either weren’t told about these long term collateral damage effects or they were told at a time when they were so overwhelmed with other cancer information, that they were not able to absorb the message. Or if they did absorb the message, they were more concerned about staying alive than really thinking through how this collateral damage would impact their post-treatment lives.

The passages of her interview that really disturbed me the most were that chemo brain and neuropathy were forever. They don’t get better. You just get used to them and find your new normal. In other words, you stay numb and dumb forever. She could have added depression, anxiety, PTSD, and impaired body image to this list as they are often long lasting, sometimes forever.

I admit to being one of those who were told the “side effects” of chemotherapy (at least the second time around) and it was a blur of nightmare words and images ending with the ultimate side effect of death. Everything else was forgotten the moment it left the oncologist’s mouth. Thank God I took notes.

But nothing in my notes said that chemo brain and neuropathy were forever. Or that I would eventually wind up with PTSD and free falling panic attacks. Chemo brain was supposed to end with chemo. Neuropathy was supposed to eventually go away.

And no one told me just how bad a reconstruction job could be. So bad, that even oncologists and their nurses urged me to find a new plastic surgeon and get it fixed. I eventually did but after about 7 years, the implant inside the flap became encapsulated with scar tissue and is now a hard ball that juts off to the left of my body. My newest plastic surgeon is afraid to operate again for fear the whole reconstruction will collapse. So I walk around with a badly reconstructed left side and a right side that should have had the permanent implant put in it 3 years ago, dragging my feet about signing up for more surgery that will result in 2 mismatched breasts or even worse, 2 matching deformed breasts.

I had a male colleague at work whose wife had breast cancer shortly after I had my reconstruction revised. I even referred them to the plastic surgeon who performed the same back flap surgery with silicone implant that I had. I remember sitting in his office 2 years
after her surgery and listening to him complain how he could no longer make love to his wife as the surgery had left her “a hideous grotesque monster”. He was generally a very kind man and I think for a moment he forgot that I too had the same surgery. My smile froze on my face and I quietly left the room, stung to the core. It quickly put me in my place that no matter how much better the fake breast looked than before the revision, in some men’s eyes,
I would always look like a hideous grotesque monster. Yes, body image issues are forever after breast cancer.

I should note that he left his wife shortly after this conversation and is now remarried to a normal 2 breasted woman. From the Facebook groups I belong to, it seems many marriages end after a breast cancer diagnosis. So do many friendships. More collateral damage to add to the list?

I had dealt with chemo brain before way back in 1994 when it was a slang term that patients used but wasn’t really acknowledged by doctors as a true medical condition. I had short term memory loss and word problems way back then but I seemed to be back to normal 18 months post-chemo.

Ten years later, I woke up one morning with 2 fingers in my left hand permanently numb although I didn’t know it was permanent at the time. The neurologist couldn’t find anything with his shock tests so I was sent for a brain MRI.

All hell broke loose then when it showed that my brain seemed shrunken (now a recognized piece of collateral damage from chemotherapy) and was covered in white spots consistent with multiple sclerosis but in the wrong parts of the brain. I still spent 3 years at the ms clinic waiting for more symptoms or for my MRI to change. Finally, I was told it wasn’t ms and then spent the next 2 years seeing every medical expert in town for a cause for my numb fingers and unusual brain MRIs.

Someone suggested it could be a late arising radiation symptom. No one ever suggested it was from chemotherapy. I still don’t have a definitive answer but I truly believe the numbness and the weird brain MRIs are collateral damage from my first 2 cancer treatments, involving both radiation and chemotherapy. Given that the condition has remained permanent for the last 10 years, I suspect my neuropathy is forever. And no, I’ve never gotten used to it or found my “new normal” in dealing with it. It makes me angry and frustrated that these symptoms showed up years after active cancer treatment. What other long-term “gifts” does cancer have in store for me down the road?

I had chemotherapy again in 2011. Suddenly chemo brain was a real condition that oncologists talked about seriously. I don’t recall being told that it could be a permanent condition. For me, the chemo brain has in fact improved significantly but it still rears its ugly head in times of stress or fatigue (and sometimes for no discernable reason at all). It seems to have stabalized about a year ago and I always assumed it would keep getting better as time went by.

But now reading that chemo brain can be forever, I am left wondering if this is as good as it gets. Will I always be plagued with a brain and tongue that don’t connect or a brain that has much poorer short term
memory than it did before the second chemo? Some women have written in the comments to this blog that they suffer from radiation brain with the same symptoms as chemo brain. God help me if this is true, as I have been radiated twice along with my 2 bouts of chemotherapy. My brain must be the size of a peanut by now, covered with even more white spots and less grey matter.

It is clear that research money has to go into ways of dealing with the collateral damage breast cancer treatments leave behind as well as trying to prevent the damage from happening in the first place. We don’t need more awareness of breast cancer. Everyone is aware. We don’t need to use race money to fund more races. We need to find ways to help with these survivorship issues. And even more importantly, we need research money for a cure for metastic breast cancer, the only breast cancer that actually kills.

Sharon Greene March 10, 2015

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Breast Cancer: It Is Going To Be A Bumpy Ride

A breast cancer diagnosis is a life altering event, physically, spiritually, and emotionally. Surprisingly, little attention has been devoted to conducting scientific studies that measure anxiety, depression, and PTSD rates in first time breast cancer patients. Even less scientific attention has been paid to these psychological effects in patients who have experienced a recurrence or a metastasis of their cancer. The statistics available are all over the map but it can safely be said that almost all breast cancer patients will suffer from depression and high anxiety levels sometime on their journey from diagnosis to post-treatment.  

These feelings may be short-term for many, disappearing within a few months after treatment ends. A significant percentage of first time breast cancer survivors (US studies say 25% while European and Australian studies say at least 50%) will go on to develop long term post-traumatic stress disorder. There is very little statistical evidence pinpointing the rates of depression and PTSD in women with breast cancer recurrences but an 80% combined severe depression and/or PTSD rate has been cited in some articles. For the stage 4 patient, it is frequently noted that the depression and PTSD rates are “very high,” which really isn’t all that surprising. While the scientific studies are few and far between, it is stated repeatedly in the cancer literature that most of us will have to deal with these negative emotions some time along our journey.

Drs. have long recognized that a cancer diagnosis is a huge emotional blow to their patients. Just the very word “cancer” strikes the fear of disfigurement, a shortened life span, and a slow painful death into the hearts of most of us. Anti-anxiety medications such as Ativan or Xanax are often prescribed to the newly diagnosed and prescriptions are freely refilled during treatment and for a short time thereafter.

The cancer diagnosis may be given in person or over the phone, depending on your doctor.  If it’s over the phone and you have paper and pen ready, you may have some recollection of the finer points of the doctor’s call when you hang up. Or maybe not. My first diagnosis was over the phone and while I wrote notes as a rush of medical jargon came my way, all that was written on my page was “breast cancer” about eleven times, in increasingly larger letters. I didn’t even manage to write down my next appointment and had to call his office back to find out what I was supposed to do next. My mind felt like a sieve in the early days of my first diagnosis as I could not seem to retain anything but the most basic information. At other times, I felt like I was having a weird out of body experience, somehow removed from all that was happening around me.  I guess the shock of having your whole world turned upside down in a moment creates chaos in your brain.

I strongly recommend taking a tape recorder and/or another person with you to the surgeon’s and oncologist’s office for your visits. The amount of information given is too much to absorb on your own, let alone process and act upon. Some doctors will explain things in plain English while others may use medical terms in a way you don’t understand. Even a diagnosis such as “triple negative breast cancer” will leave you staring blankly if you have never heard the words “triple” and “negative” applied to breast cancer before. It feels as though you have to learn another language just to understand what is going on in your body. The worst part is that before you have even mastered the fundamentals of this new language, doctors are asking you to make many impossible decisions and to make them quickly.

The diagnostic period and the  treatment planning time are among the most confusing and stressful parts of the cancer process. Not only are you reeling from the shock of learning you have cancer, you are given a huge amount of unpleasant choices to make, any of which have the potential to change the whole course of your life.

Do you want a lumpectomy with radiation, a single mastectomy, or a double mastectomy? Chemotherapy before or after surgery or no chemotherapy at all? If you choose chemotherapy, here are the risks and benefits of each type we could offer you. One can cause long term heart problems and the other increases your risk of uterine and bladder cancer. Which would you prefer?  Do you want immediate reconstruction or do you want skip that and use prostheses or would you rather be fabulously flat? If you choose reconstruction, do you want implants or surgery that uses your stomach, back muscles, or buttocks to create a new breast? Is genetic testing necessary?  If you test positive for a genetic cancer,  do you want your ovaries removed now or later?    

All these decisions and more have to be made in a short period of time while you are still reeling from emotional shock, not fully absorbing all the information being thrown your way. It’s a wonder any of us stick around the doctor’s office long enough to make any decision, informed or otherwise!
 

The initial diagnostic period also involves further scans and tests to determine if you are one of the 10% of first time patients whose cancer has already spread from the breast to another part of the body. The testing portion of this period can bring on intense feelings of fear, worry, and depression as you have no idea whether the cancer has already travelled past the breast and into your bones, lungs, liver, or brain.    

The whole pre-treatment process takes on an air of unreality as only a short time ago you were blissfully unaware that you were even sick.  Is that really you rejoicing over clear scans and hearing yourself agreeing to amputation of part or all of your breast(s) followed by chemotherapy and/or radiation? I swear cancer never felt real to me until the first moment I would wake up in the recovery room after surgery, moaning for a shot of morphine.  With surgical pain, cancer got real very quickly (and yes I felt this way all 4 times).

Each patient has their own way of coping with the physical realities of surgery and other treatment.  Some women move quickly from shock into fighting mode, telling themselves and their loved ones they will beat cancer and kick it’s butt into the ground. Some women place their faith in God to get them through the hard times. Others adopt a strategy of trying to always find the positive or the humorous side of cancer. Others just get plain angry at the Universe, fate, or God.

All these coping strategies can be helpful during treatment as they may provide the motivation to continue with chemo or radiation even when your body is weary and just wants the treatment to be over with NOW.

Some people can stay in one particular emotional mode throughout the treatment process. Most of us flit in and out of various modes, one day feeling like a tough warrior and the next feeling like a fragile bird with a broken wing.

There are those who struggle with debilitating depression and anxiety throughout the treatment process. They may have to force themselves to continue treatment when the going gets rough. They may question if they are putting themselves through the pain of chemotherapy or radiation for a cancer that may recur or metastisize anyway, regardless of what they do.  They may feel overwhelmed, sad, and stressed most of the time.   

If you are feeling severely depressed, it may be that you are lacking a strong support system. If you can reach out to family, friends, a church or a counsellor for help, it may make life easier to deal with. If the depression is persistent and is interfering with your life, please consider psychiatric intervention and possibly a prescription for antidepressants.

The treatment period can heighten feelings of  depression through a combination of physical and emotional factors.  One of the key features of all the treatment methods is that they bring on severe fatigue which can quickly lead to emotional exhaustion. Getting out of bed, showering, and eating breakfast can feel as exhausting as a full day of physical labour. Throw a couple of children and pets into the mix and you are drained of all energy by 9:00 am. 

There are also the emotional stresses of dealing with a radically changed body from surgery and hair loss from chemotherapy. This plays havoc with your self-image and self-esteem as you wonder where the woman you used to look like a few months ago has gone. With your bald head, lack of eyelashes and eyebrows and whatever surgery was done to your body, you may feel she has no hope of ever coming back. The physical changes are difficult at any age but seem to be harder for young single breast cancer patients to handle. The literature notes that the young, the single, and the poor have the highest rates of depression and PTSD following a breast cancer diagnosis.

Depending on where you live, there may be financial pressures if you don’t have adequate health insurance or if you have to quit your job as paid sick leave is not offered.  If you are a single parent with little support, every day can feel like one long endless challenge.

Coping with cancer treatments and chemobrain simultaneously can leave you feeling helpless as your short term memory fades and you find yourself literally at a loss for words as the connection between the thoughts in your head and what comes out of your mouth seems to be irreparably broken. I remember bursting into tears several times trying unsuccessfully to express a simple sentence. At times I thought the cancer had spread to my brain as I was constantly forgetting where I had left my keys, purse, or phone and I often didn’t have the words to express to others what the problem was. Even though my doctors said it was chemo brain that was responsible for my memory and language problems, at times I thought I was losing my mind. Or that at the very least, I had suffered a stroke or was experiencing early onset Alzheimer’s symptoms.

A very vulnerable time for breast cancer survivors is when treatment ends and they stop being patients who see their medical team on a regular basis. Some of the women who spent their time in treatment being fighters or being angry or being positive come crashing down the hardest when treatment ends. I have heard women describing themselves as feeling lost and not knowing what to do next once that last chemotherapy or radiology session they were so looking forward to has come to an end. After all these months of anticipating the end of treatment, the actual ending seems anti-climatic yet frightening at the same time.

For many women, the end of treatment is when depression truly hits them. Their pre-cancer life is gone forever as they have faced their own mortality head on. There is no turning back the clock and regaining the innocence they have lost. At the same time, their identity as a cancer patient has come to an abrupt end and they must face their inner fears of a recurrence or a Stage 4 diagnosis alone, without the support of their medical team.

This transition time is very hard for many women. They reached their goal to finish treatment but they don’t have a new tangible goal to strive towards. Others around them impatiently wonder when they are going to resume their old activities and lifestyle. Their family and friends may begin to withdraw the emotional and physical support they offered during treatment as they expect the woman to bounce back to normal in a week or two, or maybe a month tops. The survivor may feel misunderstood by everyone, including herself. She may wonder how she could stay so positive through treatment and then be hit hard with depression when the treatment ends.

Cancer treatment is a physically and emotionally draining experience and it is unrealistic to think that everything will be back to normal as soon as the last treatment session ends. It takes a long time for your body and mind to recover from the trauma of surgery, radiation, and chemotherapy.  As doctors tell their patients to find their new normal, it may be impossible to return to the days of the old normal. Priorities may have changed significantly in the year or so that has passed since they were first diagnosed with cancer. Returning to the old normal may not be an appealing option anymore.

The emotional trauma experienced after a cancer recurrence or a Stage 4 diagnosis takes even longer to process than a first time diagnosis.  When cancer spreads or comes back, you can no longer tell yourself that if I make it 5 years, I will be cured. It becomes clear that cancer doesn’t play by the rules, at least not for everyone. 

When the 5 year magic cure rule is broken, many illusions that gave hope the first time are shattered forever. You no longer believe that medical science has all the answers, especially if your cancer was caught early and your prognosis was excellent. You become aware that cancer can come back again at any time or can continue to spread throughout your body even when it has been aggressively treated. You will never feel safe that this time it is gone for good, no matter how much you change your diet or make other changes to your lifestyle. You will probably continue to do everything in your power to extend your life span but you will know in the back of your mind that cancer can change the rules of the game at any time. These realizations help explain why so many women in these situations suffer severe anxiety, depression, and PTSD. The universe is not unfolding as it should. It is unfolding in a way that makes little sense to us mere mortals.

This is not to say that all is doom and gloom for any breast cancer patient or survivor. Most patients do recover their emotional equilibrium relatively quickly. Cancer may have made them aware of their own mortality sooner than they expected but there is still plenty of joy to be found in day to day living. There may be a greater appreciation for family and good friends. We may feel more grateful for the little pleasures in life that we once took for granted.  The little things that used to drive us crazy may no longer even make a dent on our emotional radar. They say don’t sweat the small stuff. After cancer, most of our minor annoyances definitely turn out to be small stuff.  
 
Those of us who suffer from PTSD may face a tougher road back to regain our positive psychological health. We may look fine on the outside, return to full- time employment, and make every effort to get on with our lives but the emotional quality of our lives may still be wounded and damaged. Some of the signs that you may be suffering from PTSD are: flashbacks or nightmares about cancer or treatment, blanking out and forgetting important parts of the cancer process, feeling emotionally numb, feeling continually hopeless and helpless, loss of enjoyment in activities that used to bring you pleasure, suicidal thoughts, and being hyper-sensitive to anything that reminds you of your cancer or its treatment. The advice given by the Mayo Clinic is that if these feelings persist and are interfering with your life, you should seek professional help at the earliest opportunity before the symptoms become further entrenched and harder to treat.

To minimize psychological distress no matter where you are in your cancer journey, using self care techniques will make the process easier. Activities that promote relaxation such as meditation, yoga, or massage can help you deal with stress. Having someone to talk to, whether it is a friend, family member, or a professional will help with sorting through the difficult feelings you may be experiencing. Finally, an in person or online support group with other women going through cancer can help you to see you are not alone and that there are others who understand exactly what you are feeling. Sometimes just knowing that your feelings are shared by many other women across the world can help you feel normal in the very unnormal world of cancer.

Sharon Greene  December 16, 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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