Breast cancer: A complete guide
A daughter and mother’s battle with cancer.
- Side Effects
- Follow-up care
Your cancer diagnosis will hit you like several gallons of ice-cold water after a banya, the Russian sauna. When you catch your breath you will realise that now you have a before and an after. In the before, the sky is impenetrable-blue, Odwalla Mixed Berry Shuffle smoothie tastes sweet with a hint of sour, and doctor visits are rare. Your family is a normal knot of complications – the kind that is complex and thorny yet not unlaceable – and your relationship with your mother is a test.
In the before, you fail that test over and over again.
In the after, the guillotine of death hovers whenever you look up, the sight of an Odwalla bottles makes you want to vomit, and a random physical pain spawns first a rush of Google diagnoses and then a panic-laced phone call to your doctor. Your family is a knot forever tied and made of steel – and your relationship with your mother is a bigger test.
In the after, you wonder if you have anything left in you for that test.
Starting somewhere in your early 30s, you will check your breasts religiously because the pamphlets in your OB/GYN’s office all propagate the early detection equals early cure mantra.
You will do it lying on your bed with first your right arm and then your left raised over your head and your fingers palpating the lumpy reality of your mammary glands. You will do it in the shower, your hands soaped with artisanal soap from a bio store. Your stomach will clamp and your jaw will tighten as you apply pressure to your breasts in a circular motion. That happens because you hate doing it, because palpating your body no matter the site makes you jittery, and because you really do not have the slightest idea of what you are looking for.
But you will keep at it – month after month, year after year – because you are terrified. You are terrified specifically of this kind of cancer, the kind that killed two of your great aunts, your grandfather’s sisters.
You remember one of the deaths – it happened when you were 16. The sister who died was not anyone you had particularly admired. In fact, you were a little scared of her – of her pursed lips, disapproving stare, and demeanour that always seemed to judge the youth.
But, you were also curious. No one told you for sure but you either overheard or deduced – you do not remember now – that she had only one breast left after an operation. In the 1970s Soviet Union, which is where you lived, no one bothered to do any reconstruction. You heard she used prosthesis for that empty bra cup where her missing breast used to be and you wondered every time you saw her how it worked. What did they make those prostheses from? How did she fit it into her bra? Did she use it every day or only sometimes? Did it feel cool or warm against her scars?
After she died you lay awake at night, every night, praying. In the atheist society of your Soviet homeland, you did not know any gods - well, aside from the ones enshrined in Lenin's mausoleum and buried in plots by the Kremlin walls. But revolutionary apparatchiks, even ones as powerful as the father of all proletariat, could not help you avoid cancer.
After she died you lay awake at night, every night, praying. In the atheist society of your Soviet homeland, you did not know any gods – well, aside from the ones enshrined in Lenin’s mausoleum and buried in plots by the Kremlin walls. But revolutionary apparatchiks, even ones as powerful as the father of all proletariat, could not help you avoid cancer. Only the eternal being, the one you were taught did not exist, could prevent the deadly disease from appearing in your body.
So you devised a prayer – a sorry collection of words that included please, God, save, and a lot of promises of good grades and even better behaviour. You said that prayer right after you climbed into bed and you said it 23 times. Exactly 23 times. You do not remember now how you arrived at the number but you remember that you counted it with almost the same religious zeal with which you whispered your home-spun plea.
Perhaps that number was wrong. Or perhaps the god you were praying to knew you were an atheist. Or maybe the Communist Party was right and there was no god. But one morning in the shower – possibly 30 years to the day when you made up the prayer you hoped would save you – you feel something in your right breast. You feel a lump, a mass that definitely was not there before, a presence that is as foreign to the dense insides of your breasts as the concept of god was to you when you put your hands together in prayer in the darkness of your childhood bedroom.
If irony had a place in these booklets, you would see it immediately: Russia is no longer your homeland when you find the lump, yet you find it while living there after a 17-year absence. You left the country when it was still the USSR, certain you would never come back: Stripped of your Soviet citizenship you were prohibited from ever returning. You did not mind it at all then. As Aeroflot’s TU-154 climbed into the cloudless Moscow sky, you bid farewell to what used to be your motherland and, with it, to the old cancer fears, the number 23, and the memory of the great aunt with one breast.
In America, your new home, doctors listen to your family story of two dead great-aunts and almost always, unequivocally, dismiss it. Because they were your grandfather’s sisters their diagnoses do not count as much as if they had been your grandmother’s. But you pick up a booklet every place you go and those booklets never specify who does and who does not qualify as family history. Then your mother is diagnosed with ovarian cancer. Although she refuses to undergo a BRCA test and although you do not yet know about the close connection between the cancer that killed your great aunts and the one that is now threatening your mother’s life, you finally hang up the breast self-exam diagram off your showerhead.
Just as the booklets advise, you try to become aware of your breasts. Your job is to know every knot, to recognise every cluster of tissue, to distinguish between what was always there and a new, unusual mass. For many months you step out of the shower relieved – “permission to live granted”, you joke to yourself. You always run your fingers over your breast tissue again though – just in case – this time lying on your back. In May 2016 you do not have to do that second run. When you step out of the shower that day you know there is something wrong with your right breast.
You must see the doctor immediately, booklets always say, in the event of feeling a new lump. Most of the time it is nothing, they assure the reader. Most lumps, they claim, are benign – the result of hormones or breast changes or possibly both. The initial shock of finding a mass over, you default to that thinking. You have just had a miscarriage – the third in three years – and you decide that whatever you felt is probably related to it. After all, you are only 37. Your great aunts did not receive their diagnoses until well into their fifties and your mother’s ovarian cancer – if even related – came after her 55th birthday. What are the chances that you, a healthy vegetarian with no history of smoking and no family history apparently worth considering, would get breast cancer this early in life?
But the next day you call a doctor. Maybe it is the memory of that prayer, the terror that paralysed you every night, and the fact that you are now back – living for the past eight months in the country where you first felt that terror. Maybe it is the booklets and the early detection equals early cure dogma that is now ingrained in your brain almost as effectively as that prayer was when you were young. Or maybe it is your six-year-old daughter and the fear that she could lose you too early for anyone to lose a mother. You do not know what makes you reach for the phone and schedule an appointment in one of the private St Petersburg clinics for expats. “As soon as possible,” you ask the receptionist.
As you speak you see your funeral reflected in the pale green eyes of the doctor - and you recall that, in the Russia of your memory, cancer is always a death sentence.
The next morning you tell the doctor – a 50-something year old woman with hair the colour of red henna underneath her white cap – everything you know about your breasts, your family history, and your recent miscarriage. Although your language of disease is English, the terms in your arsenal having come from all those booklets you had collected in America, you speak Russian to her. Most doctors’ English is less than rudimentary in this clinic. As you speak you see your funeral reflected in the pale green eyes of the doctor – and you recall that, in the Russia of your memory, cancer is always a death sentence. It does not take long for the old anxiety to resurface.
To push back on the hopelessness, you emphasise the miscarriage. You want to believe it to be the source of what you found and you want the doctor to believe it too. If the doctor believes it, then it is more likely to be true, at least in your mind. The physician sends you for a mammogram. Your breasts are squeezed, poked, and crushed by the machine in the basement. Several days later you come in for the results. “All clear,” the doctor says.
She agrees with your hypothesis that it is probably hormones and tells you to come back after the summer if it is still there. It is the end of May and all through your travels through Scandinavia – while you suntan on a Swedish beach, explore Tivoli Gardens, and tend to a punctured tyre in Tallinn – your hand gravitates towards your right breast. The lump sticks around and, come September, you return to the clinic. The doctor sends you for an ultrasound.
The radiologist, an older man with experience that probably goes back to when you still lived in Russia, frowns as he looks at the screen. “I don’t see a mass,” he says, “but I don’t like the look of it. You should get an MRI.” He pauses. “Wait until the end of your period though.”
Early detection equals early cure rings in your head as you stand downstairs waiting for the receptionist to make your MRI appointment for the end of September. It has already been three-and-a-half months since you felt the lump in the shower. What if this is indeed cancer? How much bigger has it grown during those months? How much will it grow while you wait for your period to come and pass? Will this still be early enough for you not to die?
At night, when you dream, you see yourself in a chair - bald and pale, your cheeks sunk in and your stare absent, your legs covered with a plaid blanket. Sometimes you see your dead great aunt pursing her lips in disapproval and sometimes - an army of sick people wandering the corridors of the Soviet hospitals you still remember.
You go to bed with those thoughts and you wake up with them for the next two weeks while you wait for your period. At night, when you dream, you see yourself in a chair – bald and pale, your cheeks sunk in and your stare absent, your legs covered with a plaid blanket. Sometimes you see your dead great aunt pursing her lips in disapproval and sometimes – an army of sick people wandering the corridors of the Soviet hospitals you still remember. That is what cancer patients look like most of the time, right? Each a sorry state of a human being collecting pity and waiting for death.
One morning when you wake up after one such dream, traces of fingernails still imprinted in your palms, you decide to get a second opinion. An American opinion. You miss the upbeat worldview of most US doctors, you miss the easiness with which they project optimism, and you miss not seeing a graveyard in their eyes when they speak of cancer.
So you pick up the phone and you call the Regional Medical Officer at the US Embassy in Moscow. Your husband works at the St Petersburg Consulate – that is why you are living in Russia – and, while for most routine health care you see Russian doctors, you are always encouraged to contact the American trained physician with serious matters. A potential cancer diagnosis qualifies as one such matter.
You get what you were looking for in that call. The doctor tells you not to worry – your mammogram was clear, your ultra-sound inconclusive, your age very young. “I don’t think you need an MRI,” he says. “But if it makes you feel better, go for it.” And then he adds: “No need to wait for your period to end, though.”
You weigh his words for a moment. You can take his opinion and forego the 30 minutes you would have to lie motionless in a tomb-like tube. The claustrophobe and the optimist in you root for that option. It does not mean you will never check it out – you can simply just postpone next week’s appointment and see if the lump goes away on its own. But you already did that over the summer, did you not? The memory of that 16-year-old praying in her bed stops you from picking up the phone. You keep the appointment.
The private clinic does not own an MRI machine and you climb inside a Siemens-made white cylinder in a state-run hospital – the kind that surfaces much too often now in your nightmarish dreams. There the wall paint is chipped, corridors are drafty, and doctors – instead of technicians – run the tests. After you are done you ask the doctor who administered yours: “What does it look like?” Out for a smoke in the hallway, she shrugs. “All looks normal for now,” she says. Then she adds: “We still have a few thousand images to review though.”
On a stroll one night that week you look up and see a full moon. Wishing on it is a childhood practice so you stare at that bright disk in the sky and make just one wish. But, like your adolescent prayer, it does not work.
You decide to concentrate on her first sentence and forget the second. On a stroll one night that week you look up and see a full moon. Wishing on it is a childhood practice so you stare at that bright disk in the sky and make just one wish. But, like your adolescent prayer, it does not work. Two days later you receive word from the clinic that the MRI detected a mass and that you will need a biopsy.
You schedule that biopsy for the next day for you are done with waiting. A spectre of death hangs around you as three Russian doctors – your physician, the radiologist, and the surgeon – assemble in the room to carry out the biopsy. They try hard not to look like they feel sorry for you, but you know in their minds they have already buried you.
A week later, your diagnosis comes through and you read the two words you feared your entire life: Zlokachestvennaya opukhol – a malignant mass.
In Russian, the words zlokachestvennaya opukhol mean a mass of an evil character. Zlo, the first root of the word zlokachestvennaya, can also – according to the dictionary – mean harm, ill, vice, misery, and disaster. To you, that lump is all of those things.
The day the clinic hands you the report with the two words written in cursive by a government lab technician, you spend the entire afternoon crying. You cry leaning on the steering wheel of your car after you leave the clinic and while large snowflakes fall from the sky blanketing the city in fluorescent white. You cry when you get home an hour later, call to tell your husband, and watch the snowflakes out of the window. You cry that evening after you tuck your daughter into bed, call your parents in America, and realise the snow has stopped falling.
The State Department evacuates you for treatment to Washington, DC in less than 48 hours. You take your daughter out of school, squeeze in as many sweaters, jeans, and boots as your suitcases can hold, and say farewell to your apartment. You do not know if you will ever be back.
Before you leave for the airport you sit down – as always in the kitchen, your daughter perched on your lap. You go through this sitting-down ritual every time you go on a trip – it is a superstition designed to attract good luck and make that impending trip uneventful. Because you hate to fly you usually take this time to close your eyes and send good vibes to the pilot, the plane, and the Universe. The latter has replaced the god you never learned to feel.
But this time, your thoughts stay clear of the takeoff and landing, of turbulence, and of being suspended in mid-air over the ocean. Instead, you think about the part that comes after the landing – you think about your appointments, first with the surgeon and then with the oncologist, and you think what kind of news you will hear from both.
It has now been almost six months since you felt that lump in the shower – so much for early detection. Has the cancer spread while you went from doctor to doctor in Russia hoping for good news? How long do you have left?
When you land in Washington Dulles and everyone gets up to disembark, you turn to your husband and whisper that you do not want to leave the plane. For someone who has always looked forward to this moment – the moment when at last you are free from the debilitating fear of flying – this is rare. In the past, you wanted nothing more than to exit that plane. Now you want to stay. Facing what comes next terrifies you.
It has been years since you and your mother were close - and it has been even longer for you and your dad ... But a major disease changes that, or at least that is what you hope. All you want now is for your mother to hold you and to tell you it will be alright. But instead, she tells you something else.
Your parents live in the suburbs of Washington, DC and they meet you at the airport with flowers. You are happy to see them – happier than when you came to visit under normal circumstances. It has been years since you and your mother were close – and it has been even longer for you and your dad. Always critical of your life choices, your parenting, and your career, your parents are the last people you think of when you think of support. But a major disease changes that, or at least that is what you hope. All you want now is for your mother to hold you and to tell you it will be alright.
But instead, she tells you something else. There is a similar diagnosis in her health history now – and a similar lump in her right breast. She did not mention it when you called crying, but a scan picked up a mass, the same mass that was there last year when her ovarian cancer came back. Back then her doctor told her it was probably nothing – partially because of its location and partially because it disappeared after the second round of chemo. But now it is back and the doctor thinks it is cancer.
You see the same breast surgeon and the same plastic surgeon. That second appointment you actually take together and at first, the nurse thinks one of you is there to accompany the other. But you ask for two paper robes and for a moment she is speechless. When the doctor comes in, he asks her to coordinate the schedule so that your mother and you can go one after another. The surgery theatre is booked for the next three weeks and once again you have to wait. By the time the surgeon touches you with her scalpel, it will have been seven months since the moment you felt the lump.
At the appointment with the oncologist you mention this. “Many of those cancers are slow-growing,” she says. “Three weeks won’t make much of a difference.”
Consequent tests tell you that your lump is large, over five centimetres in size, and you wonder what it means. If the cancer inside your breast is indeed slow-growing, does it mean it appeared long before you felt it, was there all those months you checked your breasts, and possibly even while you breast-fed your daughter, six years ago? Was it there as you tried – and failed – to carry a baby to term three pregnancies in a row? Perhaps, you decide, your lump was the reason for the miscarriages. Maybe that prayer worked and God – or the Universe – was looking out for you.
You have your surgery on December 12 and your mother has hers on December 13. Both of you decide to undergo a double mastectomy – why worry about the second breast for the rest of your lives, you agree. You share the same surgeons, the same surgery theatre, and the same hospital room as you recover. When you get home you empty your surgical drains almost on the same schedule.
Many booklets tell you that family support is essential for getting better. There are even separate booklets advising caretakers about how to care for their loved ones and for themselves. From the day of your arrival, you stay at your parents’ house – a three-storey, four-bedroom Colonial. You hope you will be able to live with them during the harshest section of your treatment – through chemo and radiation. Because you and your mother are going through the same thing, you want to go through it together.
Your parents’ bedroom is on the main level and you occupy the two upstairs bedrooms – one for your daughter and one for you and your husband. Your six-year-old has been brave all through the sudden move, the change of schools, and the tears she constantly sees you fighting. But she is young and the pressure she feels surfaces almost every day in arguments, fights, and whining. You are not a saint either: It has just been too much. You have been yanked out of your normal life and thrown into a ravine. You feel like you are still falling.
You have fights. You and your daughter scream at each other. She whines and you snap. She talks back and you raise your voice. She misbehaves and you yell. You are not proud of yourself for any of this and yet you find your response difficult to control. Your parents find it loud. Your father, especially, cannot tolerate the noise.
You have fights. You and your daughter scream at each other. She whines and you snap. She talks back and you raise your voice. She misbehaves and you yell. You are not proud of yourself for any of this and yet you find your response difficult to control. Your parents find it loud. Your father, especially, cannot tolerate the noise. Every time your daughter raises her voice to demand something, he is there. Every time she argues when you ask her to pick up her toys – because you know your parents will complain about the mess – he is there. Every time either of you closes a bathroom door with too loud a click – he is there.
He does not say anything but he expresses his disappointment with a loud sigh, a roll of his eyes, and a complaint to your mother. At night, they discuss your parenting failures in hush tones. As far as they are concerned you have never been a good mother. Everything she does wrong is your fault – and everything you do wrong is your fault too.
Your father also does not like you cooking. The house has an open floor plan and the smell of the garlic and onion you use lingers long after you make the meals. He hates this smell. He also hates the presence of pots and pans in his sink – there are so many of them and they are always there. Your parents do not really cook – their most complicated dish is mashed potatoes served with chicken or beef. You want vegetables, many of them, in your diet while the chemo ravages your body. You stir fry, saute, and grill them. He complains.
The fights, the cooking, the constant stream of critical comments take their toll. Soon no one is talking to each other. You have a fight, first with your father and then with your mother. She takes his side. In January – after your first chemo and after you lose your hair – they tell you to move out.
Most chemo side effects are physical – you read plenty about them in the booklets you have collected since your diagnosis. You will lose your hair, they say, and your eyelashes. Your brows will most likely go too although they might be the last to disappear. You will be nauseous – so nauseous that your doctor will prescribe you a pill especially for that. On the second and third day following each chemo treatment, you will feel like a rake has been applied to your insides and you will spend both days in bed alternating between drowsy stupor and heavy, nightmare-laced sleep. On the fourth day, you will migrate to the couch to watch reruns of Friends at which you will not laugh. The metallic taste you will develop in your mouth will ruin your favourite foods for years to come. A decade later you will still not be able to drink the Odwalla smoothies your husband bought you on chemo mornings.
Emotionally you will be asking a lot of why’s. “Why me?” is a common one especially as you go about your daily life and see cancer-free women your age. You will develop a special kind of hostility towards those who are pregnant, plan to get pregnant, or already have more than one child. The doctors tell you that your fertility days are over and, even if your ovaries are able to release eggs after the chemo, you should think twice about using them. First, because you never know how cancer cells that may have migrated to other parts of your body will react to the flood of hormones generated by pregnancy. And second, because you should remove your ovaries altogether. With your mother’s ovarian cancer history and your BRCA gene – you test positive for it – there is just no telling what your future may bring.
But the why me's and the hostility will seem like an aromatherapy treatment when your parents tell you they no longer want you in their house. After they say it you try to appear indifferent - you roll your eyes, shrug your shoulders, and just say khorosho, okay. Then you go upstairs, bury your head in a pillow, and stifle your rage.
But the why me’s and the hostility will seem like an aromatherapy treatment when your parents tell you they no longer want you in their house. After they say it you try to appear indifferent – you roll your eyes, shrug your shoulders, and just say khorosho, okay. Then you go upstairs, bury your head in a pillow, and stifle your rage. You cannot believe they are kicking you out – you, their only daughter, sick with a deadly disease and going through it at the same time as your mother? Were they not the ones who always claimed how different they were from their American counterparts? Families are closer in Russia, they always said. They used that reasoning to meddle in your life decisions, to insist you listen to their advice, to control your life.
You now know that bid for closeness was false, employed only when it suited them, stroked their ego, or contributed to their parental bragging bank. Your father is the main culprit – he is the one who insists your moving out will benefit both you and your mother’s recovery. You know it is his own benefit he is looking after and you are angry your mother does not protest. But she takes his side – as usual – and you begin looking for a place to live.
You make a stupid decision then – you convince your husband to buy a house. Later you will know that you would have never made that decision had you not been sick, had your brain not been fogged up by chemo, and had your heart not felt like a lead cannonball after your parents’ decision. But in that moment, being a cancer patient in a temporary rental apartment seems impossible – there is already enough fluorescent light, bleak furniture, and pasteurised environment in your hospital visits. Instead of sterility, you want a sanctuary, a space to call your own, a place that can nourish you on the outside as the chemo ravages your insides. You want to be sick at home.
Within a month of your parents’ ultimatum, you sign the papers on a townhouse. For the first two weeks, you sleep on the floor – you cannot afford to buy furniture and the old bedroom set you have kept at a State Department warehouse takes this long to arrive. Some of your dishes and cooking supplies are there too so while you wait for them to be delivered you eat out – most often at Baja Fresh. You crave vegetables and their pico de gallo is unlimited and free.
In the afternoons you park your car outside of your parents’ house and wait for the school bus to drop off your daughter. The townhome you purchased is attached to a different school district but you keep your daughter at the school into which you enrolled her when you landed two months ago. There is no reason she needs to go through another school change and, besides, when your mother feels well she always picks her up. Your parents may have written you out of their lives – but they still love their granddaughter.
While you sit there in your rental Chrysler PT Cruiser you look at the windows of the house and wonder if your mother is watching on the other side. You try to envision what she must be thinking. Does she feel guilty for going along with your father’s wishes and kicking you out? Does she blame you? Does she feel regret at not being sick in one house, making soup for each other, and comparing side effects while drinking tea with jam together at night?
Does it not bother her that the two of you had the opportunity to become close again and she did not take it?
Through February and March, you freeze in that Chrysler. You do not want to waste gas or pollute the environment so you do not run the engine while waiting for your daughter. By April your mother is done with her treatment – “You’ve had enough chemo to last a lifetime,” her doctor says. You start your second round then – “We treat young patients aggressively,” your doctor tells you. You lose the last of your eyebrows.
Soon your mother begins to feel better and offers to pick up your daughter more often. She even says a few words to you. Her hair reappears, she is in a better mood. You still do not go inside their house but, by May, you are on speaking terms again. In June, when your second round of chemo is over and your oncologist gives you a week’s break before sending you for radiation, she suggests a vacation by the sea. You cannot fathom a week in close proximity to your parents but your body craves water.
They take care of everything – tickets, a rental apartment, food. You buy a bathing suit that hides your scars, a bandana and a hat for your bald head, and you pack your laptop. You will be sharing a two-bedroom flat with them – you will need a place to hide. You spend hours in your room writing whenever they are indoors. At the beach, you read.
Your mother and you slowly reconcile. You do not know if it is because she misses you or because she feels bad for what happened but she is trying. You do not resist but you are not too eager either. You are still angry and your father’s constant presence does not help. He is still the same – looking for things to criticise, disapprove of, and complain about. You do not cook or make noise at all during that week.
When radiation ends and your oncologist allows you to return to Russia, you have your first glass of celebratory wine in months. It makes you sick but you ignore the nausea. You had been hoping she would agree that you could complete your year-long immunotherapy treatment there. You want to go back because you want your pre-cancer life – the apartment in the centre of St Petersburg, the school your daughter loves, the friends you miss, and the expatriate lifestyle you crave. You want to go home.
The townhouse you bought is not the home you want to hold on to. Like the Odwalla smoothies, it is now impregnated with memories you would rather forget, feelings you would rather repress, and experiences you never wish to repeat.
Your mother does not think you should be leaving. “How can you trust a Russian treatment?” she asks you. You do not. You will be getting your immunotherapy in Finland across the border – you already arranged it. It will take an hour’s flight, or a five-hour train ride and an overnight stay, but you are willing to do that every three weeks. You would rather do that than remain in Washington.
You fly out at the end of August just in time for your daughter to start third grade. There is a short fuzz of hair on your head, enough for you to leave behind the wig you have grown to hate. Your parents see you off at the airport, upset and disappointed that, once again, you did not heed their advice to stay. They do not want to be away from their granddaughter, they do not understand why you would choose to live so far, and they lament the separation you create by moving away. They want the family to be close – but, once again, they want it on their own terms.
You settle into your coach seat and much like you bid farewell to cancer fears when you left Moscow as a teen, you say goodbye to the cancer experience you have survived in America. You have left behind the hair loss, the nausea, and the tears. You have designated your house an investment property and relinquished it to renters. You have given small gifts to your oncologist, your chemotherapy nurse, and your surgeon. You hope you will never see them again.
Yet it is not a clean break. As the plane takes off in the direction of the country where your fears began, you know those fears are there to stay. But there is also more. In addition to carrying the taint of cancer forever, your after will also include grief. The grief over the lost peace of mind, the grief over the children you will never bear, and the grief over the relationship with your mother you did not get to mend.