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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Cancer Changes Everything

I saw a meme the other day that said something like “cancer can take away my body parts but it can’t touch my mind, my heart, or my soul.” Lovely words, heroic even, if you don’t think about them too closely.  I thought about them very closely and found I disagreed strongly with the message.
One way to interpret this meme is the superficial positive message of, “I am more than my disease. I am still a real person under the scars and the bald head and the chemo sickness. I am still me in my mind, heart, and soul”.

On that level, I can accept the meme’s message. But when I look at the words as they are written, not searching for a positive hidden meaning, I find myself in total disagreement with them.

I don’t think we can compartmentalize our lives that easily. The physical changes impact the mind, the emotions, and the spirit. It is not just the physical changes that lead to mental and emotional distress. The very process of being diagnosed with a life-threatening disease plays havoc with our minds, emotions, and our spirits. We are more than the sum of our physical parts. Our bodies, minds, emotions, and spirits are all intertwined to make up the whole package of our being.  Our bodies don’t exist in some separate dimension away from the mental and emotional parts of our being.  I do not believe that we come out of the other side of a cancer experience the same person we were when we went in.

Dealing first with the physical changes that cancer brings upon us, they have an enormous impact on the mind, the heart (emotions), and the soul (the very core of our being and our belief system). Breast cancer treatment often strips us of our breast(s), our hair, our fertility, and sometimes our ovaries or even our whole reproductive system. Often times treatment pushes a woman into at least temporary menopause. For others, the menopause is early and is permanent. No matter what kind of treatment is involved, there is physical pain and sickness from surgery, chemotherapy, and radiation.

Our whole body image can change dramatically in only a few months time. Suddenly, all the physical attributes of what makes us female are gone. This plays havoc on our self-esteem and self-confidence. Yes breasts can be reconstructed, hair will grow back, fertility may be regained if we are very young and lucky or if we had the foresight to freeze eggs or embryos in advance of chemotherapy or gynecological surgery.

But breast reconstruction often involves multiple surgeries and for some, the end result is disappointing at best. And a reconstructed breast no longer has any feeling in it, no matter how cosmetically wonderful it may look.

Assisted reproduction techniques are not always successful. Chemotherapy can leave behind a permanent legacy of neuropathy (numbness in the hands and feet), hormonal drugs can lead to chronic joint pains, and surgical or chemically induced menopause symptoms can be more severe than natural menopause and are unlikely to be treated with hormonal supplements as these may reignite cancer.

With all these physical “side-effects” of cancer treatment, is it any wonder that many women feel distressed or depressed or highly anxious? When you look in the mirror and don’t even recognize the person you were 6 months earlier, it is bound to affect you mentally and emotionally. If you are in chronic pain and are suffering hot flashes at 30, it tends to change your outlook on life.

As far as cancer not being able to touch your mind,  I have one word for that. Chemobrain. It is real, it affects your memory, your concentration, and your ability to communicate effectively. It can feel as though you have had a mini-stroke as you dig through the filing cabinets of your mind to find that elusive everyday word you have used a million times before. Other times the right word is in your brain but a totally random word comes out of your mouth as if your brain and mouth were no longer connected. Then there is the disconcerting habit of losing things – your purse, your keys, your phone – only to find them right in front of you the whole time. So yes, cancer treatment can take away the mind for many of us, at least temporarily.

As far as the heart or the emotions, just the very diagnosis of having a disease that can potentially kill you tends to strike fear and panic into your heart. You wait endlessly for pathology reports and the results of various scans to see if the cancer has spread. You worry about loved ones and how they will cope during treatment, or in the worst case scenario death, particularly if they are young children or aged parents that you normally care for.

Even when the cancer is caught at an early stage and the prognosis is good, most women are still highly anxious about a recurrence or a future diagnosis showing the cancer has spread. Once you have had cancer, you feel your body has betrayed you once and can do so again. Your sense of safety in the world has been irrevocably affected.  You have come face to face with your own mortality, realizing you just might not live to a ripe old age. These factors can bring on depression, anxiety, panic attacks, and in some cases, PTSD. So yes, cancer can and usually does attack the heart (emotions) as well as the body.

Finally, your soul or your very essence of being can be adversely affected as your perspective on life changes. Some of the changes may be for the good in that you start to appreciate the people and things around you more as you feel you came close to losing them. But it can also make you more wary of planning for the future, knowing that cancer could re-enter your life at any time.

You suddenly become aware that many women are dying of this disease, women your age and younger, as well as women whose cancers were also detected early and were given an excellent prognosis.  The world of cancer seems very random, more like a roll of the dice than like the orderly world of the cancer media which says early detection will keep you safe. You may search for ways to put yourself in control of your cancer by completely changing your diet and lifestyle only to hear about organic vegans who ran triathlons and died of cancer anyway. When you realize that the difference between living and dying of this disease seems to be more a matter of luck than anything else, your previously optimistic view of an orderly controlled world is essentially gone for good.

Perhaps I am presenting an overly pessimistic view due to my personal history of having breast cancer 4 times. It is a rarity in the breast cancer world to have cancer strike 4 times and not spread beyond the breast. I am grateful that I have been spared from Stage 4 cancer multiple times, particularly as I also have a BRCA1 mutation to contend with.

But even “good” recurrences like mine come with a huge emotional and spiritual price tag attached. I am constantly looking over my shoulder waiting for cancer to strike again. It is impossible for me to believe that this time I have “beaten” cancer as it keeps coming back for another round. Even if my breast cancer days are over, the BRCA1 mutation means I am susceptible to other forms of cancer that may be waiting in the wings to strike when I least expect it.

I don’t blame cancer for all the problems in my life. But I would be lying if I said that cancer didn’t have a negative impact on all areas of my life. I don’t believe cancer only took physical body parts away from me. It took much more of a toll on my emotions and spirit that I tried my best to cover up for many years. I am still happy with my life but I miss the wide eyed optimist I used to be. I don’t think she is ever coming back again and that makes my mind, heart, and spirit sad.

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Finding My New Normal After Losing My Old Normal

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I was first diagnosed with breast cancer at 29. February,2015 will be 27 years from the time of my first diagnosis. I have spent almost half my life battling breast cancer.

“Finding your new normal” is one of those popular buzz phrases spoken by oncologists, counsellors, and other cancer survivors. I’ve always felt that this word was like a password to a secret clubhouse that everyone in Cancerland belongs to except for me. Although I know this password, I am obviously missing something that would allow me to gain entry. Maybe a special knock or a secret handshake is also required. While I can spout the phrase “new normal” without difficulty, I’ve never quite understood how those words applied to my life.

If we uttered the phrase “changes to your life” due to cancer, I could easily relate to that. I could draw up a long list of the ways my life changed with the first diagnosis,the first and second mastectomy,the bad reconstruction job,the repeated bouts of cancer,and the discovery that I lived for 16 years under the illusion I was BRCA negative when in fact I was BRCA1 positive all the time.

Maybe I have problems relating to the word “normal”. The changes that happened to my mind, body, and emotions were anything but “normal” as we usually think of the term. Losing my breasts, lymph nodes,fertility,and ovaries may be normal for BRCA positive cancer survivors and previvors but there is nothing normal about that in terms of the population at large. Being diagnosed with 3 separate breast cancers at 29, 34,and 36 is statistically improbable in the breast cancer world. Having a fourth breast cancer at 52 puts me into a rare category that very few breast cancer patients attain (or would want to attain). Top that off with all 4 cancers being of the triple negative variety (not influenced by hormones) which is a reasonably rare breast cancer, and there is very little that is normal about my world.

If we are talking about acknowledging that these things happened to me and that they form part of my present reality, I can do that. Have I fully accepted, embraced, and integrated these changes into my life in a positive and life-affirming manner? Uh no. Although I can be happy and positive much of the time, I am not happy that I had to go through these events at such a young age. I’m also not happy that I had to have my cancer come back over and over and over again. This is my life, this is my reality, this is my world but there is nothing normal about it. And there is little I can do to normalize my experiences so that they make some sort of sense in the context of the rest of my life.

I try to think back to what my old normal was. I was an only child who spent the first 12 years of her childhood growing up in a typical suburban neighborhood. My parents and I attended Baptist church every Sunday and my parents were complete tee-totalers. This “normal” existence underwent a dramatic change in 8th grade when my father went from complete tee-totaler to a full blown raging alcoholic and valium addict in the course of one year. My world was completely turned upside down and I had no idea how to deal with this “new normal”. My father’s alcoholism progressed with great speed and his moods veered between sickeningly sentimental and raging mad, with very little in between. My lifelong battle with anxiety and depression started in the 8th grade and progressively got worse throughout high school.

My mother felt the best way to protect me was to get me out of the house as soon as I graduated high school. We lived in a university town so we planned to find a major that wasn’t offered locally. We hit on Criminology as it was only available 1000 miles a way. Not the best way to plan for your future education, but it achieved its purpose and I was able to leave home at 17.

The next 12 years were the college and early employment years. I attained my BA in Criminology, gained some work experience as a probation officer, went back to university to complete law school and spent a grueling year articling (similar to interning) with a large law firm in Vancouver. I had dated widely, fallen madly in love at least twice, broken a few hearts and had mine broken in return. I never doubted that I would have a law career or that I would marry and raise a family. Those were the fun years filled with plans, hopes, and dreams about the future. After the chaos of growing up in an alcoholic home, I loved my fun filled yet hard working “new normal”.

On the eve of my entry into the legal profession, I had my first cancer diagnosis. It changed me in ways that still affect me today. The career was put on hold. The doctors said no pregnancies for 5 years or else I would die, so marriage and a family were put on hold as well. Although I only had a lumpectomy and radiation, I developed major body image issues as I knew no one even remotely in my age group who had a weird looking mismatched breast. I became shy about dating, not knowing when to break it to them that I had undergone breast cancer treatment. So dating was also put on hold. Fear,anxiety,and social unease became my constant companions after that first diagnosis and continue to haunt me today. Is this considered my first experience with cancer’s “new normal”?

I still believed that being cancer free for 5 years meant you were cured. Over that first 5 year period, I did launch my law career and began dating again. I was offered a promotion and a move to a new city hours before I went for my 5 year mammogram. I told my employer that I would be back shortly, that this mammogram was just a formality, as all prior mammograms had been clear. Unfortunately for me, this mammogram showed cancer again and a mastectomy and 9 months of chemotherapy were my only options. Good-bye promotion. Good-bye new city. And the 5 year no pregnancy rule started from scratch all over again.

I was off work for 18 months. I had lost my last illusion about being cured of cancer. Where the first cancer had brought fear and self-doubt into my life, the second cancer brought a kind of craziness. The world which I always believed was a fair and orderly place, became chaotic and events seemed completely random. Whether I lived or died seemed completely out of my control. Any plans I tried to make for my future seemed to be quashed as soon as they were made. It was clear that there were many things my oncologists did not know, many questions they could not answer. I felt a lot of confusion. It seemed that whenever fate was about to give me a big break, cancer re-entered the picture to turn my dreams to dust. Was this feeling of hopelessness and helplessness my “new normal” for my second cancer?

I had reconstruction surgery which looked bad even from the start. Even doctors and nurses at the Cancer Clinic would comment that I should see another plastic surgeon to try to fix it. My breast resembled a lumpy flattened pancake but as it had taken a long time to heal, I wasn’t eager to go under the knife again. My body image issues and self-consciousness grew considerably worse.

18 months after returning to work, a new cancer was found in the remaining breast. I had a new surgeon who said doctors had recently abandoned the 5 year pregnancy rule and that if I wanted a child, I should hurry up as I was already 36 and could have early ovarian failure due to the chemotherapy. I got married and we soon found ourselves at a fertility clinic. 2 rounds of IVF were unsuccessful so we formulated a Plan B. We started the adoption process and a year later, we had a handsome baby boy. 16 months after that, we were blessed with a beautiful baby girl.

I took one of the early BRCA tests and was declared BRCA negative. Life was good. Until one day it wasn’t. The marriage imploded, I was blindsided,and I was left as a single Mom to a 22 month old toddler and a six month old baby. Once again, my hopes and dreams were shattered and life seemed as random and arbitrary as it had during my second cancer.

The years went by, the kids kept growing, and the cancer stayed away. After 16 cancer free years, the cancer came back. I was looking at another mastectomy and more chemotherapy. Only this time around, there were children involved, ages 9 and 11. This time I really was afraid of dying as I didn’t want them to lose their mother at such young ages. The kids were scared too but wouldn’t really say so. My son wanted me to appear as normal as possible and not look like a cancer patient. He wanted me in a wig and full make-up 24/7 (didn’t happen). My daughter would feel sick with vague symptoms on chemo days or oncology visits. She wanted to accompany me to all these appointments as that seemed to make her feel more secure. It was another crazy hysterical chaotic year but we muddled through it somehow.

After cancer 4, I was encouraged to retake the BRCA test as it was now looking at things it hadn’t looked for originally. Suddenly, I was BRCA1 positive and at high risk for ovarian cancer. There was a great rush to have my ovaries and fallopian tubes removed as soon as possible.

With Cancer 4, I became a bit of a medical curiosity given that I was BRCA1 positive, had an aggressive grade of an aggressive cancer, and had survived for so long without the cancer metastasizing outside my breasts. At work,things were looked at somewhat differently. Between the cancers and the 2 adoption leaves, my coworkers saw me as someone who was rarely at work. The office atmosphere was decidedly chilly upon my return from Cancer 4. My self-esteem was plummeting, I still had side effects from chemo brain, and I started feeling incompetent in a job I had held for 25 years. A year ago, I took a medical leave and have since been diagnosed with post-traumatic stress disorder.

My “newest new normal” now has a mixed diagnosis of PTSD, depression, and anxiety. I no longer plan too far ahead for fear of jinxing any happy days that lay ahead. I worry about my children’s future – who will love them and look after them if I am gone? At the same time, I am forever grateful that I get to be their Mom. I try to live each day as if it may be my last.

Is this the “new normal” everyone talks about? Is it some combination of hard lessons learned and the feeling of walking on a trapeeze with no safety net underneath? The feeling that my luck will once again run out and I will be forced to take another spin on the Cancer Roulette Wheel of Fortune? Is it all those scary feelings combined with a fierce protective love for my children that keeps me going forward each day?

What does the “new normal” of cancer feel like to you? Have I completely missed the boat on this one? Is it supposed to be a positive thing or a negative thing? I really would like to hear your thoughts in the comments below.

Sharon Greene January 15, 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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Happy Holidays From Cancerland

It is almost that time of year again. The shopping malls have been decorated for Christmas since Halloween. Almost every radio station is playing Christmas music around the clock. If you have young children, they are excitedly waiting for Santa to come and visit. If you have preteens or teenagers, they are preparing their holiday wish lists and fully expecting Mom to buy them every item, no matter how high the cost.

Christmas movies paint a serene picture of the family hanging stockings together, opening the perfect presents (no socks or underwear) under a magnificent Christmas tree, and gathering together at a table groaning under the weight of every food imaginable. Some families probably do have Disney worthy Christmases but for most of us, there are some less than picture perfect moments.

I recall Christmases where my daughter was so excited, she threw up under the Christmas tree. Then there were the Christmases of my youth where people would start drinking too early and by dinnertime would be rude and belligerent. (This was also usually accompanied by someone throwing up). The presents were often bought during the peak of the holiday shopping season in understaffed stores filled with testy shoppers, creating huge amounts of stress. The feast on the table was often prepared by one woman, usually Mom, who baked cookies for weeks and was up at the crack of dawn preparing the turkey and side dishes. The poor woman was so exhausted by dinnertime that she couldn’t even enjoy the food she had so painstakingly prepared.

These less than perfect holiday moments can be enough to throw a healthy person into a tizzy. Now throw breast cancer into the mix and it is easy to understand why many patients and survivors dread the winter holiday season.

It isn’t just Christmas or Hanukkah that bring forth these feelings of anxiety and dread. Thanksgiving, children’s birthday parties, New Year’s Eve, and anniversaries can also be difficult times for patients, survivors, and their families. Although this post focuses on Christmas, it is called “happy holidays” for non-politically correct reasons. The issues outlined below can surface on any special event where people are supposed to be celebrating with others and the expectation is that everyone is filled with happiness and joy.

If life was fair, cancer would be diagnosed or treated on a calendar system in which these events would only occur at the least stressful times of the year.  I was going to say they would only occur at a convenient time but there is no convenient time of the year to have cancer.

Unfortunately, people receive cancer diagnoses or news of recurrences or metastases year round, including right before the Christmas season (or other important events). The shock of receiving this kind of news makes it difficult to want to celebrate and be festive with distant relatives or friends. As well as trying to process the bad news, there is often a sense of guilt about ruining everyone else’s Christmas/Hanukkah/Kwanza if you talk about cancer. Somehow rushing around the mall for presents or cooking a major meal seems trivial and pointless in the larger sense of the life and death issues you are facing. You may not be ready to share your news with the extended family, yet at the same time, cancer is all you think about. New Year’s Day with its emphasis on making resolutions for the year ahead

can bring on depression if you are worried that this may be your last year alive. Even if you don’t anticipate dying, it is hard to make positive resolutions when you know you will be spending much of the new year facing surgery, chemotherapy, and/or radiation treatments.

For those already in treatment or recovering from surgery, there are even more challenges to face. You feel unwell. You ARE unwell. All the preparations for the holidays are too overwhelming to cope with. There is no way you will be baking, cooking, and cleaning, to prepare a feast for a crowd of people. Even preparing a simple Christmas meal with only your immediate family may be enough to knock you out for the next few days.

If you are having chemotherapy, the smell of certain foods may make you feel nauseous. Chemotherapy often affects the taste buds making even favourite foods taste unpleasant. Painful mouth sores can make any kind of eating feel like torture. Fatigue and loss of appetite are also common side effects of chemotherapy. Finally, you may be warned by your oncologist to avoid crowds as your immune system is weakened. Shopping malls and large family gatherings may be more than just exhausting. They may make you so sick, you end up hospitalized. This happened to me 3 years ago and I spent the entire 4 day Thanksgiving holiday in the hospital with a fever and a white blood count of zero.

Radiation treatment and surgery bring on their own challenges. As well as feeling exhausted, you may be in pain from radiation burns or in all the places where the surgeon cut into your body. You may be taking heavy duty painkillers that wreak havoc with your mind, appetite, and digestive system. You may not have the energy to sit up for long periods of time socializing and making small talk with people you are not especially close with the rest of the year.

Even when active treatment has come to an end, the depression and anxiety associated with losing your medical safety net can leave you feeling less than merry or jolly. The holidays are difficult for most depression sufferers as the rest of the world looks so happy while you feel hopeless and miserable inside. Your fears of a recurrence or metastasis may be heightened right after treatment has ended and the oncologist says, “see you in 3 months”. It’s a scary time as you try to transition from full-time cancer patient to finding your “new normal”. People may be expecting you to bounce right back to your old life once treatment ends. You may feel like you still have one foot in the cancer world and the other foot in mid-air, looking for a safe landing spot in the post-treatment land.

BRCA1 and BRCA2 families have their own special problems with family celebrations. They may be grieving the loss of those relatives who were taken from the world too soon because of cancer. Those who are previvors may worry about their own upcoming surgeries or question their decision to opt for surveillance. Watching the young children and teenagers of their extended families, they may worry as to what lays ahead for them in the future.

For some people, the holidays may still be fun and joyous as it is a welcome distraction from thinking about cancer. You may welcome the break from the trudgery of treatment. Depending on the type of gathering, you may only be surrounded by the people you love most in the world and find their company soothing and comforting. Particularly if you have children, you may make an all out effort to give them great Christmas (or birthday) memories just in case things go terribly wrong and you want them to remember you as something other than a sick Mom.

With my 4 cancers, I have been in diagnosis, treatment, or recovery mode on every major holiday and special event over the years. During Cancer 4, there was Thanksgiving in the hospital, my then 11 year old son’s birthday party at Chuck E. Cheese, and my then 9 year old daughter’s birthday party at a go cart track on a very windy day, while clutching onto my wig for dear life! It wasn’t always easy and it wasn’t always fun, but I’m glad we made some good memories on those occasions. Christmas and my birthday also fell during chemotherapy but both of those events were very low key affairs as that was all I was capable of doing at the time.

The truth is nobody actually lives in a Disney movie, not the healthy and not the sick. Christmas or Thanksgiving or your birthday can be whatever you want it to be and whatever you are capable of doing. If you want company and all the trappings of Christmas, see if someone else can do the heavy lifting for you. Instead of you making the dinner, see if someone else can host Christmas this year. Or choose to celebrate more casually with your immediate family at home or at a Christmas buffet in some fancy restaurant where you won’t be forced to make small talk with a relative you barely know.

To cut down on holiday stress, avoid the shopping malls and make all your purchases online. Spring the extra few dollars for them to be gift wrapped. Let your children decorate the tree however they want, no matter how untraditional the results may be. Do everything you can to pamper yourself, whatever that may look like to you. Get a lot of rest, take deep breaths, and don’t be afraid to reach out to someone, anyone, for help. Create a holiday that brings you peace instead of stress, joy instead of anxiety, even if it means abandoning all your former ideas of what a traditional holiday should be. Happy Holidays to everyone in Cancerland and to all the people who love them!

Sharon Greene December 11, 2014

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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Goodbye Pinktober… see you next year.

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

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

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

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

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

Sharon Greene November 3, 2014

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