News
Exposed to Cancer
February 1st, 2008
With Shawn Galbreath and Bob Riter of Ithaca's Cancer Resource Center
Monthly column for www.rasaspa.com written by Anne Marie Cummings.
"We meet people where they are." Shawn Galbreath
If you are ever diagnosed with cancer, or you currently have cancer and are looking for support, there is no better place to go in Ithaca than the CANCER RESOURCE CENTER of the Finger Lakes. The staff there will help you understand what to expect, they will help you understand what questions you need to ask, and they will give you one-on-one support along the way. Their home is on West State Street, and is open to anyone with cancer or anyone who wants to learn more about it. I sat down with Executive Director Shawn Galbreath and Associate Director Bob Riter to learn more about them and what they do. I walked away realizing that these two, or others like them, are the people you want on your side if you are ever diagnosed with cancer: people who are sensitive, people who will listen to what you want even if you don't know what that is, people who have or know of the resources you need, people who care about you and believe in your life.
Can you tell me how the CANCER RESOURCE CENTER got started? Bob: We began in 1994 as the Ithaca Breast Cancer Alliance formed by eight women who all had been affected by breast cancer. They wanted a venue where they could share their experiences about the disease and help others who had questions. At the time we were strictly a volunteer organization.
How has the CANCER RESOURCE CENTER helped those with cancer? Shawn: We're often a first stop after people get the diagnosis, and we provide them with information and support. Our motto is, "Because no one should face cancer alone."
Bob: We try to be there for people, to provide what they need; everyone has different needs, so we link people to existing resources.
Shawn: It's all very personal, tailored to each individual's unique set of circumstances.
Bob: A lot of our skills are fairly generic, a lot of people need help with financial matters, or where to find a wig; a lot of these needs aren't diagnosis-specific.
And about how many people do you work with a year? Bob: About five hundred.
What is cancer? Bob: Cancer is a collection of diseases by which cells multiply out of control and have the capacity to spread elsewhere.
Is it the body's way of turning against itself? Bob: Not necessarily, that's usually referring to an autoimmune disease.
How are cancer cells surviving in the living body? Shawn: They grow out of control and can form tumors that have their own blood supplies; they're sort of "parasitic" and take over. A lot of medical interest over the last few years has been directed at cutting off the blood supply to tumors. Some of the newer medications try to cut off the blood supply to cancer cells. Some of them are working, but they are very expensive.
What do you think of the statement that cancer is not an actual disease, but a desperate and final attempt by the body to stay alive for as long as circumstances permit? Bob: I wouldn't agree with that. Cancer begins at a very cellular level. Cancer begins long before there's any evidence of it.
What roles do fear, frustration, low self-esteem, and repressed anger play in the origination and outcome of cancer? Shawn: I would say in terms of the origination, probably very little. That comment blames the victim for cancer, which doesn't make sense given what we know. There are plenty of people who have done all the "right things," yet they find themselves diagnosed with cancer. It's unexplainable.
Bob: As far as outcome, we talk to people with cancer, we help them come to the best decisions they can, and this support certainly helps them in the recovery process.
Shawn: Some people do make choices, such as smoking or having a high-fat diet, which might contribute. But if someone is angry all the time, it doesn't necessarily mean that they'll get cancer. It's not a fair disease, it can get anyone.
Cancer appears to be a highly confusing and unpredictable disorder. Why is this? Bob: We speak about cancer, but we're really talking about an entire range of diseases. Lung cancer is very different from breast cancer, which is vastly different from prostate cancer, and so on. With breast cancer alone, there are many different subtypes. They each behave differently with different prognoses.
The way an individual views their cancer, and the steps they must take to cure it are some of the most powerful determinants for their future. What do you suggest someone diagnosed with breast cancer do? Shawn: What one does is very individual. What we can offer is tailored to each person. Someone might be so distraught that we suggest they see a counselor, but it really does depend on what is happening with each individual. Sometimes what we suggest is, "Take a deep breath." People are often overwhelmed with "what if" questions, questions that are impossible to answer. They feel as if they need to make immediate decisions when in fact they do have time. I caution people about the advice they get; treatments are changing rapidly. We have cancer-survivor volunteers who are phone companions to many of the people who come here seeking help, and we now are hearing that they can't relate to some of the new folks because the treatments that are being offered today are so different. Remember that cancer treatments are changing rapidly. The treatment that was standard three years ago may not be standard today. What you hear from people treated in the past can be out of date. So we try to help those diagnosed with cancer take time out and sort through all the information they receive in order to understand their needs and their treatment options. It's important that they are comfortable with the decisions they make.
Do you believe that one of the problems with cancer is that patients given the diagnosis are so terrified that they submit their bodies to procedures that lead them to death? Shawn: This isn't what I know. I think people go along with what doctors say because they trust their doctors, but that still doesn't mean a patient will thoroughly understand the process for radiation or chemotherapy. Again, I think it's important for people to be comfortable with their decisions. Some cancers are aggressive and you have to move quickly, and some are slower so you have more time to sort your options.
What is the element that prevents the body from healing cancer naturally?Bob: Sometimes it does; many cancers never progress. A lot of breast and prostate cancers for example. Many don't cause any real harm, you just don't know if it's going to be you who gets a life-threatening diagnosis.
Shawn: There are people with cancers who never know about it. Autopsies done on older men have shown that some of them had prostate cancer that was never noticed. My mother-in-law has a small cancerous tumor on her kidney at eighty-four years of age. It was discovered when her doctors were doing something else for her. They've just "kept an eye on it," and since it hasn't been a threat to her, they have chosen not to do anything more.
What role does genetics play in cancer? Bob: Cancer is a genetic disease, but some people confuse genetics and heredity. Cancer results when the genes cause cells to multiply out of control, so there's the problem with the genes. But when a person is diagnosed with cancer it doesn't always mean that it's been passed on. Certain types of breast cancer do have a strong hereditary component, five to ten percent, which means that ninety percent are not.
Is it possible that for many cancer patients whose immune systems are already compromised, just one dose of chemotherapy or radiation can turn out to be fatal? Bob: If a person's overall health is compromised and one treatment could kill them, I would think they wouldn't get the treatment.
What is the current percentage of cancer patients who respond well to chemotherapy and radiation? Bob: This varies depending on the type of cancer a person has. There are many other variables, but some people may receive both treatments, and it's not always decided all at once. Some people may start with chemotherapy, and then move on to radiation depending on how successful one or the other is. Again, it depends on the cancer. This is a very complex question, like the disease, and it can't be answered with one statistic.
Can you explain the difference between radiation and chemotherapy in relation to cancer? Bob: Radiation is usually prescribed to kill off cancer cells in a particular section of the body - it targets cancer cells in the breast, and is local. Chemotherapy is a systemic treatment killing cancer that may have spread.
Are the incidences of cancer increasing around the world? If so, why? Shawn: We've seen the incidences of breast cancer increase worldwide. Some might say that's because now it's more easily detected, but there are also a lot of environmental factors that could be responsible as well. Also, people live longer than they did before, and there is an association between age and risk for breast cancer. But one thing that tends to happen is that as women get older they stop having the necessary check-ups- they may be too relaxed about it when they shouldn't, but unfortunately they do and they can risk their health. We do see lots of people fifty years and older, but we are also getting more and more young people coming in seeking our support. It's my understanding that if a woman starts her period younger, then she may be at risk of developing breast cancer earlier as well. About seventy percent of breast cancers are hormone driven so a number of medications are hormone related. About ten years ago there was a call to reduce hormone replacement therapy (we used to go on it forever), but doctors aren't suggesting it as much anymore, and if they do, only for short periods of time.
Most people in the Western world turn to a doctor for everything. Does this mean that the masses are no longer thinking for themselves, and have lost trust in their innate healing abilities? Shawn: I just moved back here from Scotland, and I have noticed that Americans are much more aggressive about health improvement overall. I think I saw one jogger in Edinburgh, and I know that most people I knew over there did not know what their cholesterol level was. On the other hand, they are much more fatalistic about their health.
Bob: I think Americans have learned to be dependant on the medical community. There are pros and cons to that. We aren't our own physicians, but we are the people who know our bodies best. We are the ultimate authority of our bodies. We may know what feels right, but we don't always know why something doesn't feel right. And this is why when it comes to cancer we require medical attention. To those who come here seeking help I encourage them to see a physician.
Nutritionist Gary Null says, "A solution to cancer would mean the termination of research programs, the obsolescence of skills, the end of dreams of personal glory, triumph over cancer would dry up contributions to self-perpetuating charities..." As sick as this may sound, do you think some organizations subconsciously do not really want to find the cure to cancer? Shawn: There is certainly much more attention to finding a cure, as compared to finding out the causes of cancer. There are a lot of us who think there should be more research into what's causing cancer, and yes, there are several industries built around "cancer."
Bob: I agree that we've had much more focus on treatment as opposed to prevention, but I have also known lots of people in cancer research and treatment, and they are overwhelmingly good people Unfortunately, the more we find out about cancer, the more complicated it is. There aren't simple answers.
What can be done, if anything, about the harmful side effects that come from treating the symptoms of cancer? Shawn: There are a lot of cancers where you don't feel symptoms, but there's a lot being done when you're going through treatment.
Bob: Twenty years ago nausea was the most horrific side effect of chemotherapy; now that's dealt with by taking medication. Anyone who's gone through chemotherapy appreciates a pill that helps with the nausea side-effect. As far as radiation, the side effects there have lessened as equipment has gotten better and better. Today's most common side effects of radiation are skin irritation and fatigue. Fatigue is universal, but most people tolerate it fairly well. The actual course of radiation is being constantly refined and improved.
Shawn: We do mention to people the benefits of meditation, yoga, and rest. Massage is also a wonderful way to help with the management of stress that accompanies the situation, it helps many people deal with the effects of cancer and can certainly improve the quality of their lives. We like to offer help by suggesting a number of resources that are available in town.
How many people seek alternative services? Bob: A fair number. A lot of people seek complimentary services side-by-side with their treatments. I know of a large number of people who have chosen acupuncture, massage, homeopathic medicine, yoga, herbs, energy work, visualization, and so on. We share our resources with all who inquire.
How supportive are cancer doctors towards alternative medicine? Bob: Some alternative treatments, some vitamins for example, may interfere with chemotherapy, anesthesia, and your body's natural response to surgery, so it's important that you share with your doctor. It's also important that your doctor be aware of what you're doing. For people who want to know what questions to ask in regards to alternative medicine, Choices in Healing, by Michael Lerner, is a book we have here in our library. In my opinion it is the most balanced book on cancer and alternative medicine. Often when I've read books about cancer and alternative medicine they are biased, but Michael Lerner has a very open-minded approach which I appreciate.
Some people with cancer have stated that cancer is a wake-up call to take one's life back, what are your experiences with this? Shawn: I would say this is definitely true for some people. They view cancer as a "gift" to re-evaluate what they are doing. Others just want to get past it, as if they were going to the dentist or having their tonsils removed; they don't want to dwell on it, not for a second. In fact some people have said, "I do not want to hear that cancer is a gift, and that it can change me, or bring me closer to God." And I can understand where they're coming from; cancer brings with it a myriad of problems, a change in the family dynamics, financial difficulties; for many it has wreaked havoc in their lives, but for some it's not as devastating.
Both of you have had cancer? Bob: I was diagnosed with breast cancer. Because it was invasive, I had a mastectomy and chemotherapy. I was in treatment for about seven months total finishing my treatment in 1997.
Shawn: Mine was DCIS at a very early stage, so I had radiation. I was in a clinical trial, and when they removed the lump they did one heavy-duty dose of radiation. Because it was in its very early stages there were some discussions among my medical doctors as to whether it was pre-cancerous or cancer.
Are there warning signs? Bob: For breast cancer, it's usually a lump that doesn't go away. For colon cancer, bleeding and a persistent cough are common signs. Anything that feels different, that doesn't go away, should be looked at by a physician. People generally know what's normal or not normal for their bodies; and anything that isn't normal is worth having checked. I had a lump in my breast, and then bleeding from my nipple. I knew with the bleeding it was serious, but I didn't know for sure until I had the biopsy. Eighty percent of breast lumps are not cancer
Was cancer a wake-up call for each of you? Bob: It certainly made me feel that my life was less guaranteed.
Shawn: I agree with that. But for me, at the time when I was diagnosed I had already made big changes in my life, so my reaction was anger at getting sick. For me it felt that it was a fight, and I just wanted to fix it because I like to fix things; I needed to get it under control. I was living in Great Britain when I discovered I had cancer and treatment, and then I moved back to Ithaca sooner than I anticipated. It certainly helped me relate to the job here. I felt more of an affinity to the mission.
What does someone who's been diagnosed with cancer go through emotionally? Bob: I don't think there are stages that everyone necessarily goes through. We're all different. I think people do tend to ask, "Am I going to die? And why do I have cancer?" Those are questions they have.
You are both exposed to meeting new people and then facing their deaths. How do you both view death? Shawn: Personally, I have my own philosophy about death. Death is a part of life, and I've had relatives and clients pass away, but what I try to do is appreciate people's lives and what they've contributed to the world. I believe that each and every person I've encountered is still with me spiritually. I rely on that, but I don't push that onto other people. I'm certainly sad for the people who get left behind. This is always a difficult thing.
Bob: I worked with hospice and being around people who come to terms with the end of life. I deal a fair amount with people and their diseases, and I've realized that there's always something you can do to help them. Hope is not just about the cure; there's a lot of goodness out there. Death is a part of life, it's a natural evolution. I think when you've had cancer you realize that getting old is a good thing. It's not something I fear.
Was there a spiritual growth lesson behind cancer for you? Bob: It caused me focus much more on the present moment. I asked myself if I was enjoying what I was doing, if I was contributing in such a way that made my life feel more meaningful.
How does animal protein affect an individual with cancer? Bob: There's a lot of research looking at diet and cancer. Some of the information coming out now is that breast cancer risk may be may be related the weight of a person. For instance, if you have excess weight, some fat turns into estrogen. So one thing people can do is watch their weight. But remember that cancer is never about one thing, there are so many factors involved, and paying attention to your diet is essential to a healthy lifestyle whether or not you have cancer. Some smokers never get cancer, they go sixty, seventy, sometimes eighty years smoking cigarettes and never get it, and at the same time some non-smokers end up getting cancer. People desperately want and look for a simple answer, but there isn't one. It's about a lifetime of exposure to all kinds of things and the interaction between a person's genetic make-up and the environment.
What is the best diet, in your experience, to survive cancer? Shawn: We don't tell people what to do; we don't prescribe anything. We have books on nutrition, we have them look at materials and information. We don't recommend, we encourage people to make their own decisions.
Bob: I often encourage that people not make huge lifestyle changes during treatment, you can do all those things later, but sometimes when you're in the middle of treatment you need to just get through the treatment.
Is it easy to be discouraged? Shawn: On occasion, yes, but mostly I feel very positive. What we do here is productive. We get to see that our help changes a person's outlook. We are talking face to face with those diagnosed with cancer and saying to them, "We're here whenever you need us. We will help you in the best ways we can." Many people help us and we're very well networked. Yes, of course it's frustrating, but I don't allow myself to dwell on it, not when the work we're doing helps so many others.
Clearly, cancer is a challenge, not only for the individual diagnosed with cancer, but the individual or individuals supporting their loved one with cancer - what do you recommend the caregivers do during this time? Bob: Listen. It sounds trite, but it's true. People often get pummeled with information, so just listening without giving advice is what I encourage, and we don't only work with cancer patients, we work closely with their loved ones as well.
The CANCER RESOURCE CENTER contains a library of 700 or more books on breast cancer - if you had to pick three that you would recommend to someone with breast cancer, what would they be? Bob: It depends on the person, their education, their level of interest; this helps us determine what's best. Different books are good for different people. Many people with breast cancer turn to Susan Love's book, Dr. Susan Love's Breast Book.
What do you think makes some doctors better than others? Shawn: Good clinical skills that are up to date, and also a doctor who listens and communicates well. You want both of those.
Besides better understanding the causes of cancer, can you tell me what the CANCER RESOURCE CENTER hopes to achieve over the next ten years? Bob: To continue to evolve and serve people with all types of cancers, to continue to support the loved ones of those with cancer. To continue to be a client-driven organization where we meet the needs of our clients and continually adapt to those needs. It's not like we have a box of answers. It's critical that we individualize our services - we meet each person where they are.
On your web-site you state that the first wave of the breast cancer movement was: "It's okay to have breast cancer," and that came about in the 1970's; the second wave was: "It's not okay to have breast cancer and we need to stop it from happening." What's the third wave of the breast cancer movement going to be? Bob: My beliefs are that breast cancer advocacy will become increasingly world-wide in nature, the disease does not conform to geopolitical borders, so breast cancer advocacy will increasingly focus on access-to-care issues. At the local level, here and elsewhere, breast cancer advocacy will evolve into advocacy for all types of cancer.
The mission of the CANCER RESOURCE CENTER of the Finger Lakes is to create and sustain a community of support for people living with and affected by cancer in Tompkins and surrounding counties. To learn more, please visit www.ibca.net, or visit Shawn and Bob at the CANCER RESOURCE CENTER, located at 612 West State Street, across from Kinko's. It's on the block between Meadow Street heading North, and Fulton Street heading South. Metered parking on the street is usually available. There is a free public lot on Buffalo Street across from Joe's Restaurant. You may also call Shawn and Bob directly at the CANCER RESOURCE CENTER: (607) 277-0960, or by using a New York state only toll-free number (866) 905-7770.
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