Today’s post comes from Leah de Roulet, a great oncology social worker I introduced in my last post. She has kindly agreed to share some of her insights about coping with cancer as well as practical issues of navigating financial and insurance issues from her decades of social work experience. One of the founding directors of the nonprofit GRACE, I hope that Leah will be able to find the time to participate regularly by providing posts and participating in forum conversations about the large part of oncology that doesn’t deal with clinical trials and hard evidence. Here is her first post, on a timely topic on New Year’s Day, when we focus on beginnings.
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Cancer is a terrifying disease. While a number of other afflictions can be more assuredly fatal, malignant disease occupies a special place in our hearts and our minds. Many of us have memories of friends or loved ones who have succumbed to cancer in ways that can often be so painful, humbling and humiliating that no other illness strikes the kind of fear into us that this disease does. Such an illness, played out over an extended period of time, affects not only the patient but everyone close to the patient.
From that first enormously overwhelming expression of fear, panic, or emotional shutdown, other feelings come and go with disconcerting regularity; so many ups-and-downs that those of us who work with cancer patients think of it as the emotional roller coaster everyone rides during the cancer experience. There may be anger, depression, anxiety, a sense of being helpless, powerless, out of control, extreme feelings of vulnerability, feelings of betrayal by their own body, or of unfairness, as in “Why me?” Above all, the overriding emotion is fear: fear of treatment, fear of loss of control, and fear of death.
Always, there is grief – grief for the loss of the sense of one’s self as a healthy person, a sense most of us carry with us and seldom acknowledge until something goes wrong with our health, and that image of ourselves is destroyed. Suddenly, we are very vulnerable! This form of grief is almost never acknowledged; we are conditioned by our culture to hang tough, be strong, and certainly, no self-pity is condoned. Still, the sadness is there, and it is hard to give voice to the feelings, rarely identified as grief, for the simple fact of having cancer. Yet, think of the loss, no longer can the patient say, “I am a healthy person”, but rather, “I am a person with cancer”. Family members and friends will find it helpful to understand the feelings, emotions, and psychological tasks of the patient recently diagnosed with breast cancer, and recognize their own feelings in these descriptions. A famous author, James Baldwin, once said, “Not everything that is faced can be changed. But nothing can be changed until it is faced.”
So, how does one manage to cope with all of these terrifying waves of fear, grief, panic, and face the challenge of meeting with physicians, discussing treatment options, worrying about family concerns, financial concerns, children’s concerns, and make the best decisions possible under the circumstances? In this first column, we will begin to explore what helps, and it is my sincere hope that this will become a true conversation between you, the reader and me!
Let’s begin at the beginning, with diagnosis. Most patients report that they never heard another word after the doctor used the dreaded “C “ word, and said, “Yes, unfortunately, this is cancer”. Common responses include statements like these: “I remember feeling fear, just fear: fear of dying, fear of pain, fear of treatment, fear of being sick, fear of dying in pain.” Or, “I was consumed with panic; I wanted to run away, but there was nowhere to run; the problem was inside me! How could I feel so well and yet have something so wrong growing inside me?” I actually had a patient once who did run away; she called me from somewhere on the Olympic Peninsula after being gone for over 24 hours, and asked me to call her husband and tell him she’d be home tomorrow; she just needed time to sort it out for herself. This was the rare someone who acted on the feeling so many patients have!
Alternately, some people feel nothing; the fear and anxiety are so great. I‘ve heard: “It’s fair to say I didn’t feel anything: I was numb, frozen. I walked around for a week believing it wasn’t true, someone had mixed up my medical records, or the pathologist had made a mistake.” “When I heard the word cancer, I felt I had been handed a death sentence!” Since most patients readily admit that they never heard another word after the word cancer, they need the assistance of a third person in the room, one who can ask some of the questions the patient may forget to ask, and most importantly, one who can remember the answers.
If you are the support person who is with the patient during these first few medical visits, or if this should happen again to a friend or loved one, it is helpful to take notes on the conversation or better yet, use a tape recorder. Most physicians are comfortable with this approach, although it is advisable to ask permission to tape the conversation, before starting to record. Doctors who specialize in treating cancer are fully aware of and completely understand the inner psychological paralysis and incredible fear people experience when first diagnosed with cancer. Although more people than ever are living with cancer, deep in our hearts, we are all afraid that a diagnosis of cancer is a death sentence. There are currently over 11 million cancer survivors in the US alone!
Try to learn as much as possible about the disease you have been diagnosed with, or delegate the task to a loved support person. The information gathering process may be initially scary but I have found that the more patients understand about the disease and the treatments the more they can participate in the decision making process. Learning as much as possible is a powerful way to gain control over the fears and anxieties and partner with your physician in your journey into “cancer world”. Understanding some of the information is difficult, the language of medicine is a language in and of itself, and the learning curve may be steep, but it is truly worth it!
The support person can help the patient to take control. To ask the right questions, communicate with doctors and nurses, navigate through the complex system of medical specialists, opinions and treatment options, and find information, resources and additional, perhaps professional, support. You can be the person “surfing the net” or reading those books to access the information and answers needed in order to ask the right questions of health care professionals. This can be a difficult balance; most patients are overwhelmed with information, and are unable to assess what needs to be assimilated now, and what is unimportant, or can be addressed at a later date. Communication among family members may be strained at this time, since at an emotional level no two persons are at the same place at the same time. This is also true even at an intellectual level in the definitive understanding of the disease and its treatment. The person with cancer has the primary right to set the timetable for when he or she is ready to talk; others can encourage that readiness through their love and continued presence. Your local American Cancer Society, the National Cancer Institute, and even the health education centers of your local hospital can provide you with enough information to begin the information process. This is the first step in coping with a cancer diagnosis, so please educate yourself, find a cancer specialist you are comfortable with, ask lots of questions; remember there are no stupid questions, and begin to face what must be faced!
Old ideas and beliefs are difficult to change; yet there are more cancer survivors today than ever before, and this number continues to grow as earlier detection, better diagnostic tools, and more effective treatments become more universal. Increasingly, cancer specialists are now able to discriminate between those cancers most likely to recur, and that therefore require more aggressive treatment, and those cancers less likely to return, or are less aggressive. This ability to predict is based on prognostic indicators linked to the cancer cell’s molecular genetics and specific characteristics; enabling the physician to more effectively tailor treatments to the individual characteristics of each patient’s cancer. Because of this, we are seeing longer disease free intervals, and greater long-term survival, and each day brings research that is helpful in providing new treatments, new ways to alleviate symptoms, and better results!
I am looking forward to your questions, comments, ideas for future posts, and lots of conversation.
-Leah
posted by Dr. West @ 12:27 pm link to this post
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January 1st, 2008 at 2:02 pm
Hi, Leah:
Dr. West gave you a big buildup yesterday, but it didn’t come close to preparing me for this. It was a marvelous piece. Thank you!
Perhaps at some point you could address the relatively few at the other end of the spectrum — those who, after a brief adjustment to their new normal, go on to make such seemingly outlandish statements as “cancer was the best thing that ever happened to me” or “my life didn’t truly begin until I was diagnosed with cancer.” I’ve heard this from several people, both in and out of the public eye.
Welcome, Happy New Year, and Aloha!
Ned
January 1st, 2008 at 3:17 pm
Nice article. I’m glad you’re on board.
Lisa.
January 1st, 2008 at 7:57 pm
Hi Leah - I enjoyed reading your post - thank you! As a caregiver, I can relate to much of what you conveyed as well. We are currently in the first line of treatment for my mom’s lung cancer. In the future, I’d love to hear more from you specifically on the rollercoaster you mention above. It seems to be day to day - one day we’re ready to fight and feel on top of the world that Mom is going to beat this and all will be right again with the world. And then other days it’s looming that we’re dealing with cancer and there are no guarantees. What is the best way to handle those ebbs and flows?
And another topic those of us from the lung cancer world discuss frequently (and I’d appreciate your input on) is the stigma attached to lung cancer. The self-blame some LC patients feel if they do/have smoked and the perception of the disease perpetuated by the question ‘oh, did/does he/she smoke?’.
Glad to have you hear as an added resource to Dr. West, who I think the world of!
January 2nd, 2008 at 8:26 am
Great to have you helping us patients through this incredible journey. Thanks ever so much!
Happy New Year to you, Dr. West and all of the list members.
Bumph
January 4th, 2008 at 2:24 pm
Hi Ned, Aloha! Often the people who say that cancer was the best thing that ever happened to them are those who feel that the diagnosis is a “wake up call” to make some change in their lives that would not have happened otherwise. The diagnosis of cancer is a crisis, and generally people need to face a crisis in their lives before they can make any changes. You know the Chinese symbols for crisis actually stand for both crisis and opportunity. I don’t see people beginning this process of examining their lives until they are well past treatment, since until then they are totally preoccupied with getting through the treatment. Nor do I often see people who are able to sustain whatever changes they have made long term. That is one of the challenges, to be able to determine what one wants to change and then to be able to hold on to that. Most folks really do slip back into their old lives, and forget what they learned from the cancer experience. But for those who are able to do so, often the changes are profound, and primarily philosophical or existential in nature. Since cancer awakens one’s’ sense of their own mortality, it can also make one aware of what is truly important in life! Whether it is to make their life more meaningful, their relationships better, spend more time with their families, stop being workoholics, become more altruistic, or become an activist in the fight against this terrible disease, there are many changes I have seen patients (and their loved ones) make as a result of this wake up call! None of this is an automatic response and not every patient feels this way, many patients would also tell you that getting the cancer diagnosis was the worst thing that ever happened to them and that it ruined their lives. I often worry about people who hear the statement that “getting cancer was the best thing that ever happened to them,” and don’t feel that way. However one assesses the impact of cancer in their lives is very personal, we are all different! Thanks for the question, feel free to continue to dialogue. Leah
January 8th, 2008 at 5:31 pm
Hi Lola’s daughter! I am sorry it has taken me so long to reply to you, I actually did so a couple of days ago and then my finger slipped and I lost the whole reply! I hope I can recreate the info again now. Thank you for the questions, I think the question about the rollercoaster is a very important one that may have relevance for lots of folks, so I intend to devote my next column to that subject. I hope that is OK with you! I do want to say that I feel the same way about Dr. West, he is terrific, a great doctor and a wonderful person!
So for now, this reply will focus on the stigma issue. You know when I first started as an oncology social worker, probably 85 or 90% of lung cancer patients seen were or had been smokers, and most of them were over 60 years of age. Now we see lots of young adults, even under 40 with lung cancer of the type that is not even associated with smoking. And, we have all known folks who smoked 4-5 packs of cigarettes a day for 30 or more years and never got lung cancer! So clearly, there is something going on here besides just the smoking issue. We now know that all cancer is genetic, though not all cancer is inherited. Only about 10% of cancers are actually inherited, all of the others are what we call sporadic cancers, meaning that genetic mutations are occurring all of the time because of carcinogens that we are exposed to on a daily basis,and also as a result of cells replacing themselves and reproducing. As we age,the chances of errors in the normal cellular reproduction process increase, and it is easy to have an error(mutation)in the code that creates a cell that no longer behaves the way it is supposed to. One of the definitions of a cancer is a cell that continues to grow and does not respond to the normal on and off signals that the body is constantly sending as it repairs and replaces cells. This topic is really a better one for Dr.West to delve into if he hasn’t already on a previous post, but it is necessary to talk about it a bit in order to get to the “blaming the victim” conversations that are so hurtful to the patient. So, even if a person did not actually inherit a gene that directly causes cancer to develop later in life, there are some circumstances when the patient is more vulnerable to certain carcinogens in the environment. We all know that tobacco is a carcinogen, but since everyone who smokes does not get lung cancer, the difference must be due to some other inherited factors that increase vulnerability. Did you know that there are 4 major kinds of lung cancer, and at least 2 of them are not even related to smoking.
This “stigma” of “you must have caused your own cancer” also extends to other kinds of cancers as well. Now I hear this kind of talk from breast cancer patients who are being blamed because they ate a high fat diet, or did not exercise enough,or took hormones. Colorectal cancer patients are blamed for not eating enough fiber, or being obese, or not eating enough fruits and vegetables,and many cancer patients believe that they had too much stress in their lives,and thereby caused their own cancer. I guess we are always looking for something to blame, but the truth is we still don’t know for sure what really triggers cancer growth! The only way to prevent it totally would be to pick your own grandparents, but science hasn’t quite gotten there yet! So, what can we do about feeling guilty if we smoked or not, or ate too much or drank too much, or came from a family with a strong history of cancer?
We know it is hard to put the burden of educating the insensitive folks who make these kinds of statements on the patient or the family, but if you can just develop a couple of factual statements, like “lots of people smoke and never get lung cancer”, or “did you know that all cancers are genetic, even if they are not hereditary”. “I refuse to feel guilty about your mistaken perception of the cause of cancer.”
Another statement I often encourage patients or family members to make to any one who wants to blame the patient, is to say very calmly, “I know you must believe that hearing that is helpful to me, but it really is very distressing, so please don’t say that again.”
I guarantee you that if you say that once or twice,those folks will no longer make those remarks! All of the major cancer research organizations are working hard to provide the general public with information to clarify these damaging statements and banish any stigma, and I think we are making progress, though it is slow! My best to you and to Lola! More to come! Leah
January 8th, 2008 at 9:01 pm
Just a comment, but I found it helpful to take someone with us who was not so emotionally involved (in my case, my sister, who is a labor and delivery nurse/manager). She was able to understand and interpret and ask questions we needed to know but didn’t know to ask. And because she was not so emotionally involved she was able to remember what the oncologist said.
January 10th, 2008 at 11:03 am
Hi, Leah — thanks for your thoughtful response to LolasDaughter concerning the stigma issue.
You included the statement “…there are 4 major kinds of lung cancer, and at least 2 of them are not even related to smoking.” I haven’t seen it put quite that directly before and would like to get some clarification. In speaking of the 4 major kinds I assume you mean SCLC plus the 3 NSCLC subtypes (adenocarcinoma, squamous cell, and large cell) and that you’re counting adenocarcinoma as one of those not related to smoking. Dr. West’s article…
http://onctalk.com/2006/11/21/do-never-smokers-with-lung-cancer-have-a-different-disease/
…states “the never-smokers are overwhelmingly adenocarcinomas, with or without BAC features” and that “about 1/3 of BAC patients have never-smoked.” Are you counting BAC separate from adenocarcinoma, or is there another subtype with no apparent smoking connection?
We’ve had some rather passionate LCSC discussion threads on the stigma issue, and every new bit of information helps dispel these misconceptions a few people at a time. Your help is much appreciated! Aloha,
Ned
January 10th, 2008 at 6:44 pm
Leah,
a friend has been given 3 1/2 months to live and has been sent home after over 12 years of trying to resolve her Breast Cancer problem under Orthodox treatments at the hospital.
I have suggested she visit
http://www.cancerfungus.com/ Dr Simoncini\s web site who claims Cancer is a Fungal disease that can be treated with sodium Bi Carbonate.
Am I doing the right thing.
It seems to me that, if she believes the Orthodox medico’s she will just go home and die, however if she goes out looking for other possible treatments no matteer how radical in approach at least she is going forward in hope, Hope that something may help her.
Am I wrong is looking at this difficult problem she faces with more optimism than the doctors who have said they can’t help her anymore\?????
Needing guidance here as I don’t want to cause more pain than this lovely woman has already suffered.???
Thank You
Bruno from downunder
January 15th, 2008 at 6:42 pm
Oh, Bruno, what a dilemna! I strongly believe that if a person wants to try any form of alternative threatment,that’s fine; but only if they really understand what they are letting themselves in for. In 21 years at the Cancer Institue, I still remember the days of Laetrile, and all of the clincis in other countries that advertised unconventional cancer treatments that were expensive and not effective at all. It is fine to encourage hope, but it should not be false hope. The theory that cancer is caused by a fungus or a parasite is not new, and it has been researched and discarded by many major cancer research organizations.
One way to help a person make a decision like this is to draw columns on a piece of paper and look at the pluses and minuses of what is being determined.
How far away is the clinic? How many treatments are involved? What are the side effects of the treatment? What is the cost for both the patient and the caregiver or who ever accompanies the patient? If the patient has been given only a few months to live, what happens if they get really sick and die far from home and family? If the treatment is harsh, will the patient regret not having sometime to feel a little better, free from side effects of treatment? If the answers show that finances are an issue, the evidence is not strong that this treatment will help, or the patient decides that she does not want to be away from home, being able to look at that piece of paper and see it in black and white can be very helpful.
As her friend your job is to support whatever decision she makes, you know after 12 years of fighting her cancer, she may be ready to allow the hope of a longer life morph into a different kind of hope. A hope for a death with dignity, surrounded by her loved ones with no expectation that she keep fighting if she chooses not to, and lots of support from her medical team to make certain that she is kept as comfortable as possible!
None of knows how we would respond if we were walking in her shoes, and I know that some patients feel they can’t leave a stone unturned in trying to stay alive, but the reality is that treatments like this that are so far out of what is now known about cancer can be so disappointing precisely because they offer a “new theory” that often excites false hope. The let-down is even worse than if they had not gone on and taken the treatment.
My hope would be that you both research this thoroughly and discuss the proposed treatment with her medical team so you are both as well informed as can be before the decision is reached. Please let us know what she decides and know that our thoughts are with you both! Leah