Cancer. It’s the diagnosis no one wants to hear. Unfortunately though, these days most of us have known or will know someone who receives it. But what’s next? With the diagnosis comes not only fear and uncertainty, but numerous questions, and a lot of unsolicited advice. With A Cancer Companion, esteemed oncologist Ranjana Srivastava is here to help, bringing both experience and honesty to guide cancer patients and their families through this labyrinth of questions and treatments. With candor and compassion, Srivastava provides an approachable and authoritative reference. She begins with the big questions, like what cancer actually is, and she moves on to offer very practical advice on how to find an oncologist, what to expect during and after treatments, and how to manage pain, diet, and exercise. She discusses in detail the different therapies for cancers and why some cancers are inoperable, and she skillfully addresses the emotional toll of the disease. She speaks clearly and directly to cancer patients, caretakers, and their loved ones, offering straightforward information and insight, something that many oncologists can’t always convey in the office.
|Publisher:||University of Chicago Press|
|Product dimensions:||5.90(w) x 8.90(h) x 1.00(d)|
About the Author
Ranjana Srivastava, MD is an oncologist and educator in the Melbourne, Australia, public healthcare system. She presents a regular health segment on Australian Broadcasting Corporation (ABC) television and radio. Her writing has been featured in the Guardian, New York Times, New England Journal of Medicine, and the Lancet, among other publications. She is also the author of Tell Me the Truth and Dying for a Chat.
Read an Excerpt
A Cancer Companion
An Oncologist's Advice on Diagnosis, Treatment, and Recovery
By Ranjana Srivastava
The University of Chicago PressCopyright © 2014 Ranjana Srivastava
All rights reserved.
What Is Cancer?
'Mrs Jordan?' I call out. A few seconds later, I raise my voice above the low din of the waiting room. 'Mrs Jordan, are you here?'
'Yes, dear, I'm coming,' a bird-like voice emanates from behind a pillar. I crane my neck to follow the line of blue knitting yarn on the floor to its origin and find Mrs Jordan there. I join her to escort her into the consultation rooms and she huffs a little covering the short distance to my room. Longstanding diabetes and heart disease have already taken a toll — she appears older than her stated seventy-six years. When she has sat down and caught her breath, I begin.
'Mrs Jordan, I am an oncologist. My role is to talk to you about your management after surgery. But first can you tell me a little bit about what you know?'
'All I know is that the surgeon got it all.'
'And did he tell you what it was?'
There is a knock on the door as a harried-looking woman walks in apologetically. She was trying to find a parking space. 'Sorry, this is my mum.'
Mrs Jordan smiles at her daughter, who takes her hand.
'I was telling the doctor that the surgeon took out the lump from my breast, dear.'
'What did he say it was?' I press.
'I don't know.'
'Mum, he told you the next day, remember?' her daughter prompts. 'Mum was very ill from the anaesthetic,' she explains to me, 'and we were discharged soon after.'
'I don't remember being told anything else,' Mrs Jordan says. 'Are you going to take my stitches out?'
'I am an oncologist. I treat cancer patients with chemotherapy and other drugs.'
'Oh, those poor people. Well, I just had a lump.'
Her daughter gently says, 'Mum, do you remember the surgeon telling you that the lump was cancerous?'
'No.' She frowns. 'I even saw the picture — it was a regular lump. Are you sure it was cancer?'
'You are right that the surgeon took it all out,' I tell her, 'but I am afraid it was breast cancer that he removed.'
We spend the next twenty minutes discussing the implications of having breast cancer and happily conclude that Mrs Jordan does not require chemotherapy, which relieves her no end.
'Blimey, I didn't even know I had cancer,' she says, scratching her chin as she departs.
Her daughter lingers in my room. 'Doctor, I'm sorry Mum is vague. You must think we are utter fools.'
I rush to reassure her that I experience variations of this conversation every day. Many patients are unsure of the terminology of cancer, which is not surprising as many health professionals use words like tumour,lump, mass, spot, shadow and abnormality as euphemisms. Does this sound familiar to you? On the other hand, you may hear the term cancer used repeatedly and still wonder exactly what it means. So much about cancer lends itself to misconception that I want to spend some time explaining it in simple terms.
The word cancer comes from the Greek for crab, which a cancerous growth is thought to resemble. It is an uncontrolled growth of normal cells in any part of the body. Over time, the abnormal growth causes a lump (except in the case of blood cancers), although it may not necessarily be obvious to the touch. Lump is a generic word used to define many abnormalities, from a discrete mass to several little nodules and more. Cancer can arise in any part of the body — from an organ like the bowel or brain to bone, cartilage or various types of blood cells.
Importantly, having a lump does not mean you have cancer. A biopsy can show whether a lump is benign or malignant. A benign lump is a growth that can cause irritating problems but generally doesn't threaten your life unless it occupies a particularly sensitive location, such as inside the skull or near a major blood vessel or nerve. A malignant lump is cancerous. It exhibits fast, abnormal growth, which can spread to distant parts of your body, and it has the capacity to cause damage and endanger life. However, I want to emphasise that not all cancers are equally aggressive, which is something we will discuss throughout the book.
Cancer is not one disease but actually hundreds of diseases that share some but not all characteristics. Since the diagnosis of cancer has such vast implications for you it is important that you establish whether any lump, tumour or spot you have is cancerous. You need to understand this from the start, because I still meet patients who are stupefied to discover a cancer diagnosis even months into their treatment. 'But I thought they were treating a tumour,' a patient once protested in dismay when I casually asked her to remind me how long she had had cancer. I don't know who was more horrified — she, for discovering a clearer diagnosis, or I, for blithely thinking that anyone receiving chemotherapy would surely associate it with cancer.
What causes cancer? As one patient recently said through a grimace: 'Everyone has a theory about what causes cancer. I just wish instead of inflicting it on me they would go and discover a cure. Now wouldn't that be useful?' Like many patients you may be questioning what might have led to the disease, puzzling over everything from smoking and diet to where you live and your stresses at work. This isn't helped by the fact that you will probably find many people who live pretty much similarly to you but who don't have cancer. While lung cancer is strongly associated with smoking, not all smokers get lung cancer. A healthy, lifelong vegetarian ends up with bowel cancer while his carnivorous, unfit brother doesn't. Your mother and daughter have breast cancer but you and your sister don't. Obviously this isn't a green light to live an unhealthy lifestyle (there are countless illnesses just as troublesome as cancer, and some worse), but it is a lesson that you are not in control of everything that goes astray in your body.
Put another way, cancer is not caused by a single factor you might easily determine, and is likely the result of many factors. Cancer also doesn't develop over days or weeks — it takes many months or years for the changes known as mutations to affect your cells and for cancer to become apparent. Patients are especially disappointed when they had been feeling well before their diagnosis. 'I ran a half-marathon two weekends ago, I can't possibly be sick,' one young patient insisted. But a closer look at his recent history revealed that he had been experiencing weight loss for the past three months and had put down his fatigue to athletic training. As commonly happens with pancreatic cancer, there was no clear warning sign until he became jaundiced over a period of two days. He then wondered whether there was something in his genes. It is certainly possible that he has a genetic predisposition to cancer (and we may not be able to find out), but it doesn't necessarily mean that his siblings are at increased risk of the same cancer. Scientists have defined genes that indicate a greater chance of developing cancer, but again, you may carry the gene and stay healthy. The majority of cancers are not related to inherited gene defects.
Age itself is a risk for getting cancer. Our cells replicate constantly during our lives. The more times they replicate, the greater the chances that an aberration will occur. However, the body is remarkable at self-correcting and it takes many aberrations for cancer to grow. Diet, smoking, exercise, stress, obesity, asbestos, pollution, radiation, geography, immune system changes, alcohol, infection and chemicals — all of these have been linked to cancer but no one knows for sure in what way. Nobody can tell you definitely how much exposure to any of these might cause you to develop cancer or whether you ever will.
One of the more poignant things to confront at diagnosis is the guilt many patients feel for having developed cancer. You might find that you are blaming yourself or your loved one. Perhaps you are chastising yourself for not getting to the doctor earlier, for ignoring the nagging headache, for not having that blood test when it was due, or for wilfully avoiding paying attention to symptoms that you knew all along spelled trouble. You are not alone. In fact, you are just like most of us who want to stay as far away from doctors as possible and ignore things in the hope that they will go away. Often they do, but sometimes they don't. It is stressful and unhelpful to cast blame.
You should remind yourself that many factors have aligned to cause your cancer. Don't waste your time on what has gone before. Instead, join me in feeling optimistic about learning how to best navigate the way ahead.
Cancer is an abnormal, unregulated growth of cells that can occur in any part of the body.
Cancer does not happen due to any one reason but a collection of genetic and environmental events.
Not all cancers are the same, even if they sound similar in name or location. Don't automatically compare your cancer with those of other patients.
Don't feel guilty about how or why cancer happened to you — instead, arm yourself with the best ways of managing it.CHAPTER 2
Where Do I Even Begin?
I answer the phone one day to hear piercing sobs down the line and identify the voice to be that of an old friend, Allie, whom I haven't seen in some years. My heart beats heavily as I try to calm her, wondering what has gone wrong.
'You won't believe it, they said it's cancer,' she sobs. 'I have cancer. That's it, it's all over.'
I draw in my breath, jolted by the revelation.
'I am going to die,' she declares heart-rendingly. 'I have never drunk, never smoked, I've exercised hard and eaten well. How can this happen to me?'
'Where is the cancer?' I ask after a while, unable to subdue the clinician in me as I listen to her anguish.
'What? Where is it? I had a mammogram and they detected this tiny little thing. I found out the results today, but there are other tests I need to have and I have no idea when they will operate because of the waiting lists. They think it's just in my breast but asked me to have other scans, which must mean they suspect it's everywhere. I know it's bad and that they're just not telling me. I mean, why else would they look so serious? And I have no idea whether to have the lump taken out, have a mastectomy, or even a double mastectomy so I never have to go through this again. Part of me just wants to curl up and die now.'
My friend's anxiety and distress have allowed her imagination to run well ahead of the facts. Chances are that a mammogram-detected cancer is localised, operable and carries a very good prognosis. A localized breast cancer with no lymph node spread has a five-year survival rate of 99 per cent. The tests she is having are routine ones conducted in most patients. It is likely that the cancerous tumour will be removed without resorting to a mastectomy, let alone a bilateral (double) mastectomy, and she will lead a normal life again.
'I don't know who to tell,' she continues. 'Mum is nearly ninety and wouldn't take the news well. Patrick is overseas on an important business trip. Both the kids are interstate on exchange programs. There is a lady at work who had breast cancer two years ago. She had a wretched time of it and I'm not sure if I want to know more. I was going to call my sister but she's so incredibly positive that she'd tell me to look on the bright side that it's only cancer. I just don't know ...'
'Allie, I am sorry about your diagnosis. It must have come as a complete shock.'
'I'm floored by this. I kept thinking that the biopsy was just a precautionary measure until the second the surgeon told me the result. I feel totally foolish because I have no idea what to do now. The surgeon told me a lot of things, gave me a pile of information, told me to have the tests, but now that I've walked out, I feel like I didn't hear any of it. But I can't bear to call back and ask anyone. What will they think of me?'
'Allie, where are you right now?'
'I've locked myself in my car. I'm too rattled to drive and I don't want to enter an empty house.'
'Stay put. I'll come and get you and we can go through these things together.'
Her relief is obvious. 'I don't expect you do that, but it would be just wonderful. Thank you.'
Allie and I drive to her house together. I am struck to see my usually in- control friend suddenly turned into a mass of uncertainty. She is not sure whether she wants to have tea or coffee, she calls her husband twice but hangs up before he answers, she paces the corridor, sits down and then gets up and starts pacing again. She asks me to tell her the best and worst of outcomes without sparing the details, but then decides she isn't really ready to hear either. She asks me how I can do my job and watch everyone dying all the time.
'But they don't die all the time, Allie,' I say, trying to reassure her.
'Of course they do. They have cancer,' she replies morosely.
I am filled with sympathy for her as I watch her transformation. I want to reassure her that she will be fine, but that would be premature and she would not forgive the false encouragement. I decide that what she really needs is help with the immediate practicalities, so I say, 'Allie, I'll help you in whatever way you want but let's start with a list of priorities.'
This strikes her normally practical self as a good idea. On a piece of paper, I write down the following in point form:
- Book important scans and blood tests.
- Call surgeon's office to ask about a second appointment or an operation date.
- Inform Patrick, the kids and sister, Sarah.
On another piece of paper we decide on tasks to complete in the next few days:
- Inform GP, discuss plans with her.
- Tell Mum in person.
- Call regular walking partner and next-door neighbour.
- Tell immediate boss only. Hold off on telling other colleagues just yet.
By the third piece of paper, Allie feels up to writing the things she may want to do after surgery:
- Find out about the oncologist a friend has praised. (We agree that although I will be there for her, I should not be her primary doctor.)
- Locate useful patient literature on breast cancer.
- Track down yoga teacher from years ago and re-enrol.
- Tell wider circle of friends and colleagues.
- Decide how much leave to take; consider the redundancy package offered last month.
Writing these lists takes just minutes but it has the immediate effect of making Allie regain a semblance of control. The task of dealing with the shock seems somewhat less daunting once broken into smaller elements, each of which seems possible to do in itself. Soon she feels her emotions have settled enough to call her husband, Patrick, and relay the news calmly. When he wants to cancel the rest of his trip she reassures him that she will be okay for the next few days and that she has made a list of priorities. She is also able to talk to her children in the same way. I notice that she keeps all her conversations short, enough to reassure her family that she is okay, but not long enough to become upset over the phone. 'There will be lots of time to talk over everything when we are together,' she tells them.
Despite my offer to stay, Allie decides to spend the night alone in her house, saying that at the end of a very emotional day she wants her own space. She says, frankly, 'I need to get my head around the diagnosis in a quiet space. This is a total shock but if I take some time to think things through, this will be good for us all.'
Over the next few days I watch Allie in admiration as she goes about her task. I once remark on the fact that she shares her news sparingly although she has no lack of caring people in her life. 'Do you not like talking about it?' I ask.
'A lot of advice is well intended but I find it confusing and maybe unnecessary. No one is short of an opinion on cancer but my immediate path is clear — I need to have an operation, so I want to keep a clear head and get through it.'
Allie's operation is followed by an uncomplicated recovery. It turns out that she has a small, low-grade tumour for which she is able to avoid chemotherapy. Prolonged medical leave is also not required and her accumulated annual leave covers her needs.
Sometime later she reflects that many of her worst fears were never realised. 'But I would never have believed it at the time if you had told me. If I ever have to help somebody I must remember to just do useful things for them instead of trying to banish their fears.'
Fortunately, Allie is like many modern cancer patients who can expect to benefit from improving cure rates. Though the prevalence of cancer in Western countries is high, the rate of death from cancer has gone down.
The World Health Organisation estimates that in 2012 cancer accounted for over 8 million deaths. Many of these deaths occurred in low-income countries with scarce resources to diagnose and treat cancer.
In the United States, cancer accounts for a very significant proportion of the disease burden of the population. The American Cancer Society estimates that in 2014, approximately 1.6 million people will be diagnosed with cancer, of whom just under 600,000 will die. Cancer accounts for one in four deaths, surpassed only by heart disease.
Excerpted from A Cancer Companion by Ranjana Srivastava. Copyright © 2014 Ranjana Srivastava. Excerpted by permission of The University of Chicago Press.
All rights reserved. No part of this excerpt may be reproduced or reprinted without permission in writing from the publisher.
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Table of Contents
Foreword Introduction 1. What is Cancer? 2. Where Do I Even Begin? 3. How is Cancer treated? 4. Finding an Oncologist 5. What to Expect When Having Chemotherapy 6. Deciding Whether to have Treatment and Understanding Side Effects 7. How Do I Know if My Chemo is Working? 8. I Could Do with a Break from Chemotherapy 9. When to Stop Treatment 10. I’m Off Chemotherapy—What Now? 11. Do I Need Radiotherapy? 12. Why Can’t I Have an Operation to Remove the Cancer? 13. Is a Clinical Trial for Me? 14. What Happens Once I Finish Treatment? 15. I’m Getting Worse—What is the Best Course? 16. Managing Pain 17. How Cancer Affects Appetite, Diet, and Weight 18. Why Natural Therapies Aren’t the Answer 19. How Much Exercise Should I Be Doing? 20. I’m Always Tired 21. Lost Sexuality 22. Tackling Anxiety and Depression 23. Does My Oncologist Have Feelings? 24. Is My Family at Risk and What Can I Do? 25. Handling Unexpected Outcomes 26. How Long Do I Have? 27. What is Palliative Care? 28. How Do I tell the Kids? 29. Keeping Hope Alive 30. Advance Care Planning 31. Will My Death Be Painful? 32. The Impact of Being a Carer Afterword Glossary Acknowledgements