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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Parenting With Breast Cancer

When you are a parent, you want to protect your children from all the bad things in life as you love them so fiercely. You feel like this lioness with her cub, trying to shelter them from all impending harm. But when you are diagnosed with cancer, you are the one that sends your children’s world into a chaotic tailspin. Between the shock of diagnosis, the demands of treatment, and the uncertainty of what the future holds for you and your family, your children can’t help but be threatened by this disease that has invaded their lives.

Although I have had breast cancer 4 times, I only had children during the last bout in 2011. At that time, they were 9 and 11, old enough to understand what was going on but young enough that they still needed a parent who could be there for them 24/7. As a single mother with no other family for support, I found the competing demands of parenthood vs the painful realities of illness very overwhelming.

My children knew since a very young age that I had cancer 3 times way back before they were born. They were perversely proud of this fact about me as I guess it made them think I was Wonder Woman, able to beat cancer into submission at a single bound.

When after being cancer free for 16 years I learned it was back, I panicked about how I would explain this to my son and daughter. I had no idea how we would manage as in the past there was always someone around to take care of me. This time I was their caretaker and no one was volunteering to look after me (or them).

The children knew something was wrong before I was ready to have the cancer discussion. There were too many doctor’s appointments, too many whispered phone calls, and a few too many tears shed watching children’s television shows that weren’t particularly sad or sentimental. When your Mom bursts into tears over Sponge Bob’s latest escapade, the children fear the worst is about to happen. When they asked if they had done something to make Mommy so sad all the time, I knew I had to tell them the truth.
 
 

 

 
I did a little research on how to talk to your school age children about a cancer diagnosis. The articles mainly touch on three points which have been called the 3 “c” words. The first point is to call it cancer, not a generic sickness or a boo boo. The reasoning is that if they have a name and explanation of what your condition is, they will be less likely to worry about other more horrendous illnesses (maybe Ebola?) you may have. It helps as well for them to associate a specific term for the disease as they may become overly fearful of the word, “sick” as it applies to them. If they associate the word “sick” with Mommy having major surgery and going bald they may panic when someone calls them sick when they complain of a tummy ache or a sore throat. They may think their sickness may lead to the same extreme consequences that happened to Mommy. So instead of turning your children into hypochondriacs by using the word “sickness”, use the word “cancer” so they can differentiate between the two conditions.

This was the easy part for me. My children knew what cancer was because of my past history. On the other hand, they had never lived through it before and needed some explanations of the possible treatments that might be involved and the consequences of those.

My 11 year old son became fixated on the fact that I would lose my hair and that seemingly was his greatest concern throughout my treatment. Talking to him about my cancer now 4 years later, he admits he was secretly worried sick I would die and leave him. But it was safer for him to worry outwardly about my baldness, wanting me to wear a wig, even to sleep. My little caps and turbans were disturbing to him (let alone my bald head) even in the privacy of our own home.

My 9 year old daughter took my baldness and various head coverings in stride. She loved coming with me to the Cancer Clinic where free donated wigs and head coverings were there to try on and take home. She became my fashion co-ordinator, ensuring my hat matched my outfit.

She showed her discomfort about my cancer in other ways. For example, she would often feign sickness on my chemo days or at times I had oncology appointments. She knew I considered her too young to leave at home alone so she would often accompany me to these appointments. This was her way of exerting control of the situation. She seemed to think that if I went to a hospital alone, they would keep me and I would never return home.

Even though I strongly suspected her vague symptoms of illness were fake, it was clear that her distress levels were real. Taking her along to these appointments reduced her anxiety while insisting she attend school led to huge emotional meltdowns every time. It seemed the lesser of the two evils at the time although in hindsight, it would have been better for her education if I had a back-up person to send her to on those appointment days. My guess is that she would have recovered from her symptoms quickly and attended school to be with her friends. While neither child ever actively worried aloud in my presence that they were afraid I was going to die, 4 years later it is clear that was underlying their behaviour all along.

The second “c” word recommended to be included in any discussion of cancer with children is the word “contagious”. It is important that children know they will not catch cancer from you in the same way they could catch a cold. This encourages continued close contact like hugs and kisses, without the child worrying they too will become sick. My children seemed to readily understand this concept and were not afraid of physical contact with me.

The only times physical contact became a challenge were after the mastectomy and partial reconstruction, when I returned home sore with 3 drains hanging down. They had to be reminded that Mommy loved them but couldn’t tolerate a big bear hug quite yet. The other times physical contact became an issue were during chemo when they had a cold or flu and they were the contagious ones. They had to be reminded that my immune system was weak and if I caught their bug, I could get very sick. They seemed to accept that without question. I was the one who suffered guilt from not being able to care for them as a mother should when some bug got them down.

The third “c” word is “causation” in that Mommy’s cancer was not caused by anything her children did. The experts say that children under 13 are still in a developmental stage where they may blame themselves when something bad happens in the family. They may think that Mommy got cancer because I always nag her for new toys or because I don’t clean my room when she tells me to. I did reassure my children that they did not cause my cancer in any way. They both looked at me blankly as if the thought had never crossed their minds. That may be explainable by their knowledge that I had breast cancer 3 times before they were born. If they didn’t cause the first 3, why on earth would they think they caused the fourth cancer?

To help my children better understand my illness and their feelings about it, I brought home every age appropriate, “when your parent has cancer” book the Cancer Clinic had available. Although both enjoy reading, neither child showed any interest in the books even when I said we could look at them together. Maybe they thought we have to live with this stuff everyday, why would we want to read about it too?

Some cancer centers have programs specifically for children with parents living with cancer. We attended a half day program which the kids enjoyed very much as they saw others their own age living with a parent like myself. My daughter and I attended a Look Good, Feel Good program where we got to play around with and take home various cosmetics and wigs. My daughter decided I needed a purple wig to liven up my appearance so I would sometimes wear it at home for fun. This drove my son crazy as while he wanted me in a wig at all times, I was only supposed to wear wigs that were of the same color and style as my natural hair.

Trying to be a parent with cancer is challenging at best, although some of the sweetest memories of my life come from that period. Sometimes a simple caring gesture or word from one of my children would be enough to lift my mood for days on end. We did still manage to have birthday parties and a few fun outings during this year. Even at my sickest, when I was hospitalized for 4 days a week after my first chemo, the children got to spend one night with me in a private hospital room, a fun first for both of them.

Unfortunately, between the chemo brain and the PTSD, much of the year of Cancer 4 is a hazy blur to me. My children remember it better than I do. If I had to relive that experience again, I would seek out more support for both myself and the children. I also would have looked into one of the free camps for cancer families as we all needed a vacation after the previous year. They are just starting up in Canada but there are several established places in the US we might have qualified for had I known about them at the time.

While parenting with cancer can be tough going at times, especially for a single parent, it is doable as long as you can let go of your expectations of what perfect family life is supposed to look like. Sometimes a picnic on the floor altogether as a family can be more fun and memorable than a standard dinner at 5:00 gathered around the kitchen table. It’s your cancer, your family, and your lives together that determine how you best muddle through this difficult family time.

Sharon Greene January 3, 2015

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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What the Media Doesn’t Tell Us About Breast Cancer

Over the past 2 decades, the media
has painted a picture of the ideal breast cancer survivor. We see a smiling white middle aged woman telling the world how she beat breast cancer with her positive attitude and her unwillingness to ever give up the fight. She doesn’t just stop with the lessons of how she beat breast cancer. She continues her story with how having conquered cancer, her whole life has changed for the better. To her, cancer was the greatest gift she ever received from the benevolent universe.

We sometimes hear that her reconstructed breasts look better than
they did pre-cancer. How lucky she was to have gotten a free boob job! The hair loss was a bit of a drag but it grew back better than before. She speaks of how breast cancer has brought her closer to  her friends and family.  Breast cancer was a tiny blip in her life, no more annoying or life threatening than a root canal. Breast cancer has been described as the “good” cancer to get as everyone wears pink, races around a lot, and nobody ever dies.

I have no doubt that this does represent reality for some breast cancer survivors. It is also possible that some of these smiling women have repressed the worst aspects of their breast cancer experience and are choosing to only publicize the positive things that happened along the way. They present their stories through a gauzy pink veil that filters out the bad memories leaving only the good. We don’t see pictures of the very young or the pregnant or the Stage 4 breast cancer patients. We don’t see many pictures of women as they are trudging through treatment, pale and bald.  We don’t hear about the single mothers who go through treatment with little family support. We don’t see the black faces or the Asian, or the Hispanic ones. The media has painted a simplified and unrealistic picture that doesn’t accurately reflect the many faces or feelings of breast cancer.

The problems with this stereotype are many and they are troubling. Most survivors I”ve met in person or online do not relate to breast cancer being the greatest experience of their life. They remember the fear they felt when first diagnosed. Until they had the tumour removed and all the tests done, they didn’t know if the cancer had spread and if they were already dying. They remember the pain of their treatment, whether it was surgery, chemotherapy, radiation, or some combination of all  three. They may have received a lot of emotional and practical support during the diagnostic and the early treatment phases of their cancer only to find people slipping away the more time passes.
 
        
If they had reconstruction on one or both breasts, there may have been multiple painful surgeries involved with tissue expanders, implants, or the removal of another body part (skin and muscle from the stomach, back, or buttocks) to create the new breast(s). The end result of this surgery may still leave them with body image issues with the reconstructed breast not matching the natural one, the implant becoming hard and encapsulated with scar tissue, or even the body rejecting the transplanted body part and the person being left with no breast(s) at all, either temporarily or permanently. And what is never mentioned is that even if the reconstructed breasts look cosmetically wonderful, almost all feeling and sensation is gone. Forever.

Women are often fearful of the cancer recurring again or it spreading and metastisizing to their bones, lungs, liver, or brain. They may fear leaving young children behind should their cancer spread and they die.  They may find their shaky marriages dissolving from the extra weight of a cancer diagnosis. They will soon learn who their true friends are and will watch others in their life simply disappear as news of their breast cancer becomes known.

About 10% of breast cancer patients will learn that they are already Stage 4 at the time of the initial diagnosis. Another 30% will reach this stage eventually even if their initial cancers were caught at an early stage. There is no Stage 5. Stage 4 means the cancer has already spread elsewhere in the body. It can only be treated, not cured. Stage 4 is the only kind of cancer that kills although medical advances have allowed women to live longer with Stage 4 cancer than ever before. But for these women, chemotherapy and other treatments may go on for the rest of their lives, to keep the cancer from spreading even further.  They will never “beat cancer”. Their stories aren’t popular in the media.

Other women like myself will have cancer recurrences or grow new primary breast cancers in the same or the other breast. We do not die from local recurrences but the fear is even greater the second (or third or fourth time around). We know we are pushing our luck on the cancer wheel of fortune. How often can we keep catching recurrences in time before they spread into distant body parts? You don’t see many women in commercials saying I thought I beat cancer once but then it came back and I am in treatment again. This doesn’t fit with the storyline that if it is caught early and you survive 5 years, you have beaten cancer.

Stage 1 – 3 patients may be strong and full of fighting spirit while going through treatment but then fall apart when treatment ends. This is a fairly common occurrence as it feels that
your medical safety net is gone without the constant monitoring of your health by medical professionals. While active treatment can be very tough, there is still something reassuring about being seen by a medical team on a regular basis. Also, cancer treatment is like a full-time job with numerous appointments to see oncologists, plastic surgeons, and lab technicians. It is easy to set milestones and goals – 1 chemo down, 5 more to go. Treatment gives structure to your days and a final goal to keep working towards – the end of treatment. When that abruptly comes to an end, many survivors are left wondering, “what happens now?”

Friends and family may not be as supportive now that treatment is over. They feel that the worst is over now that you have completed surgery , chemotherapy, and/or radiation. They move on to other people and things, leaving you alone at a time when you might need their emotional support the most.                      

You may feel pushed and rushed by others to immediately resume your pre-cancer life once treatment ends and to put all that negative cancer stuff behind you. You may question yourself as to why you aren’t bouncing back from treatment more quickly like your friends, family, and the pink media ladies say you should. Your doctors may tell you to find your “new normal” before you even have had time to reflect on the very abnormal process that you have just experienced. 

Once you have had cancer, every follow- up oncologist appointment and every new scan, mammogram, or blood test brings anxiety levels up sky high again. Every new headache could be a brain tumour and every new ache and pain could be a sign that the cancer has spread to your bones.

You may wonder to yourself what you are doing wrong – why you didn’t find your pot of gold at the end of the pink rainbow.   

It does a disservice to those newly diagnosed and those just starting their cancer treatment process to portray breast cancer survivors as a uniformly brave, strong, courageous, and positive group of women. We survivors are all those things and more. But we are also scared, anxious, in pain, confused, disoriented, and angry at times. And that is normal. And that is okay.

Doctors have known for decades that a cancer diagnosis is an extremely stressful event and freely hand out anti-anxiety medication throughout the treatment process. They have heard their chemotherapy patients complain for years about “chemo brain” where forgetfulness and short term memory loss are common features that linger on after chemotherapy ends. They know many women suffer from the shock of a completely altered body with their breasts removed by mastectomy, their hair lost to chemotherapy, and their reproductive systems pushed into early menopause, either temporarily or permanently, by chemotherapy. New American studies have shown that approximately 25% of breast cancer patients will suffer from post-traumatic stress disorder sometime between diagnosis and the end of treatment. European studies have placed that number at closer to 50% of patients.

Many of these newly diagnosed women are in their 20’s and 30’s, just starting careers or families. Many received their breast cancer diagnosis while pregnant or while still breast feeding shortly after giving birth. Others are encouraged to undergo fertility treatment before starting chemotherapy so that their eggs can be frozen in the event that premature ovarian failure or permanent menopause prevents a future pregnancy.

More women each year are being tested for genetic defects that can hugely increase their risk of breast and ovarian cancers. If they test positive for a mutation, they will be strongly encouraged to have a double mastectomy and to have their ovaries and fallopian tubes removed by age 35. If they test positive for a mutation, this becomes a family affair with the whole immediate and extended family having to decide if they too should be tested to see if they also have the same genetic mutation. If a woman already has children, she will learn that each of her children, male and female, have a 50% chance of also inheriting this mutated gene. As genetic testing is not carried out on children, she will have to wait until they turn 18 and decide whether to get tested to see if she has passed her mutated gene onto her children.

It can be encouraging to read stories of women who have survived for many years after a cancer diagnosis without a recurrence or without the cancer spreading. All the memes on the internet urging you “to fight like a girl” or “to beat cancer’s ass” or even the more blunt and to the point, “Fuck cancer”, can be very empowering for both the woman undergoing treatment and the long term survivor. But I know for myself that it is difficult to stay in fighter mode 24 hours per day, 7 days per week. Again, speaking only for myself, I can’t live on a constant diet of positivity messages when I read or talk about cancer. It is like living on a high sugar diet. After awhile, the sugar buzz fades and I come crashing down. Hard.

Cancer has definitely changed my life, not always for the better. I need to read about the struggles of the newly diagnosed, the stories of women going through treatment, and especially the stories of the women with Stage 4 cancer. I need the grit of painful reality so I don’t forget where I came from and what I went through. I need these stories so I don’t sugar coat my story for the next person struggling with some of breast cancer’s less positive realities, thinking to myself that cancer or treatment or facing multiple new primaries wasn’t all that bad. It was that bad and some days still is. What is your cancer story? Do you prefer only to read positive stories or can you make room for some less positive ones as well?

Sharon Greene November 23, 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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About Me

About Me.