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breast cancer cancer research pancreatic cancer social media

No Such Thing as a Good Kind of Cancer

Recently, there was great controversy stirred up by a UK pancreatic cancer charity, which launched a promotional campaign in which people spoke of wishing they had a different kind of cancer, because their outcome would be better. I was dismayed. Not only is this a misguided effort, it’s downright dangerous. It leaves viewers with the idea that there is some “good cancer” out there, and that if one gets it, “no problem”.

Such an unfortunate campaign sadly misinforms the public about the real face of cancer. In all my years, I’ve never known anyone to get a “good kind of cancer”. Cancer is cancer — a generic name for thousands of different kinds of biological reactions in the body that often attack organs and blood, creating tumors, autoimmune issues, and other maddening, life-changing, life-challenging issues.

In all my decades of life, I’ve seen so many things happen. People who had good prognoses died and people who had bad prognoses lived. You can’t always predict how cancer will affect the body, and the idea that having a “good cancer” means you will survive is just wrong.

Don’t believe me? Answer this question. Which vehicle would you prefer to be struck down in the street by at ninety miles an hour:

A. a 7-ton double-decker bus
B. a 2-ton Mercedes Benz
C. a  half-ton Fiat 500

Did you say the tiny, “cute” little Fiat? Did you perceive that because of its public aura, its marketing campaign, its ability to navigate through tight spots that you would be safer being struck by one? At ninety miles an hour, does it really matter what type of vehicle strikes you? I think not. Impact on the body is a critical factor in a traffic accident. The same is true of cancer’s impact on the body. How much cancer is there? That’s what helps to determine outcome. If doctors have to treat a body riddled with cancer, the chances of survival are about equal to being hit by any type of motor vehicle at ninety miles an hour.

Here’s another question:

If you fell overboard without a life jacket, where would you have the best chance of surviving:

A. In the middle of the Atlantic Ocean
B. In the middle of Lake Superior
C. In the middle of the Amazon River

Three different bodies of water. Three different types of challenges and risks. You might think that the ocean is the most dangerous. After all, if there are sharks and other predators in the water, and the waves are rough, your survivability rate will be sharply curtailed. We know that the Amazon has piranhas, those nasty little fish that work themselves into a feeding frenzy, not to mention black caimans, those alligator relatives, and any number of other critters, so that’s probably not a great option. If you said Lake Superior, did you consider things like the shipping traffic? Or the ongoing risk of hypothermia? Or the dangerous rip currents?

Whether you’re about to be struck by a vehicle going ninety miles an hour or you’re dropped into the middle of a huge body of treacherous water, the end result is the same. It probably won’t end well.

The same is true for any advanced cancer. In this past two weeks, I have read the posts by friends who lamented the passing of this person and that person. They were all individuals with different kinds of cancer and they died.

I have also read wonderful things by people who survived their battles. Everywhere I go, in public, online, people share their stories with me. Never have I found that one kind of cancer is better than another when it comes to survivability. What matters is the stage, the treatment options, and the cancer patient’s ability to sustain the effort. There are so many variables, so many ways things can go, no one is ever promised complete cure or extended life, except perhaps in Stage One, where it’s easy to be optimistic.

Understanding the broad spectrum of diseases with the generic title of “cancer” is more complicated than most people appreciate. While the pancreatic cancer organization in the UK erred by their promotional campaign’s suggestion that there are better kinds of cancers to have, I’ve seen people make the opposite mistake. I once had a conversation with a cancer caregiver who actually thought her husband’s taking a pill once every couple of months was the same experience as my mother’s being at the cancer center five days a week for months of treatment. It wasn’t the difference between prostate cancer and lung cancer that was the problem. My mother was dying of the disease. She had no treatment options, other than to keep her comfortable. To have her cancer dismissed as the equivalent of an active man with managed prostate cancer fully engaged in life was hurtful. Four years after my mother’s death, the same man is still going strong, still enjoying life. Do I begrudge him that time? Absolutely not. I’m glad he made it. I wish everyone did.

But I also wish his cancer caregiver understood the difference between a well-managed cancer and one that is out of control — not through a failure by patient, caregiver or doctor, but because cancer is what it is. When it overtakes the body, options are fewer and the toll is much greater. We need to support cancer families in crisis with real action. We need to be there for them through thick and thin. These are the cancer patients who have the greatest hardships. These are the cancer caregivers who need a hand in providing care.

I wish everyone survived their bouts with cancer. That’s really the bottom line. Many more do now than did forty years ago. Some people manage their cancers for a while, thanks to new treatments and better diagnoses. But there are still some people whose cancers are so aggressive, it’s impossible for oncologists to do much other than try this or that. Cancer is still a mystery to figure out.

While it’s tempting to attack with an “Occupy Cancer!” attitude, as if we can sit in and force cancer researchers to cure this type of cancer or that type, the fact is the developments in disease treatment are often made in unusual ways. Just recently, there was an announcement that doctors think a new acid bath for cancer cells might be an amazing weapon in the fight against cancer. Acid bath? It sounds so much better than a cancer drug that knocks patients on their fannies and sometimes even coldcocks them. In reality, it’s not always the cancer that kills the patient. It’s the rigors of the treatments, with the dangerous side effects. Many chemotherapy patients find their organs permanently damaged by the very treatments that keep them alive.

Getting hit by a Fiat going five miles an hour is probably a survivable event — the impact on the body helps to determine the extent of the injuries. Getting hit by one going ninety miles an hour is probably not. Perspective is important when assessing cancer survivability, and the better able we are to see what is in front of us means we will act in good faith and to the best of our ability when meeting the cancer challenge.

Let’s stop assuming that the happy face social media slaps on cancer is the real story. Let’s stop thinking of the disease in terms of “good cancer” and “bad cancer”. Let’s stop thinking that some people are “lucky to have the good kind of cancer” and others are “unlucky”. We need to join together in supporting every cancer patient, every cancer family, without the rancor or bitterness. Cancer is cancer. It doesn’t care who you are or what you do or how much money you have in the bank. It doesn’t care if you’re a worthwhile person or the vilest of the vile. Cancer can’t be dreamed up or wished away. It’s a challenge that can only be met with a positive attitude, a realistic perspective, and a gritty determination to learn as much as we can to insure quality of life, not just quantity. Cancer is what it is, but life with cancer is what you make it. Choose wisely.

For more help as a cancer caregiver, visit The Practical Caregiver Guides

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#BCSM advanced breast cancer Alicia Staley breast cancer cancer research Dr. Deanna J. Attai Jody Schoger Women with Cancer blog

Jody Schoger Wants to Make a Difference in the Lives of Women with Cancer through Social Media

In my continuing effort to provide resources and support to cancer families, I would like to introduce you to Jody Schoeger. Her blog, Women with Cancer, has some wonderful insight into how cancer affects women and their lives. It’s not just about living with cancer. It’s about living life out loud with cancer.

What would you find if you met Jody in person? I was recently lucky enough to have that pleasure. We actually first talked on a little putting green in Arizona. My first impression of her was of a real Texas dynamo in a tiny package. Fit, funny, and even feisty when it comes to cancer, Jody’s warm personality comes shining through every step of the way. Her ready laugh and her obvious delight when making a decent putt put her in the category of social powerhouse. But it’s her work with cancer survivors that best defines her.

When I approached her about doing an interview for my cancer blog, I had enough good sense to ask her to be straight with me. I wanted to provide the information that she felt was most important for cancer families. The great thing about Jody is that if you throw her the ball, she’s more than capable of making a winning shot. I thought I would focus on ways to help men understand the issues in having a wife or girlfriend with cancer. Jody wisely pointed out that not every woman has a man to hold her hand every step of the way:

“There are a few things to consider. Not all women with breast cancer are married or in a committed relationship; so the questions need to better reflect the audience. There’s a large percentage of single parents and and/or divorced single women who also are navigating cancer.”

That answer is one of the reasons I felt comfortable posing questions to Jody. She speaks from the heart and the head. She’s always looking for new ways to reach out to women with cancer.

If you were to go to Jody’s blog, you’d find she covers related topics ranging from a very poignant letter from a breast cancer patient grappling with the effects of her treatment on her marriage to the latest news on the National Comprehensive Cancer Network Survivorship Guidelines to the effects of chemo brain on the mind and ways to improve cognition. She also has a great list of other cancer blogs that will increase your ability to find information and inspiration about cancer. Resources are so critical when you’re feeling overwhelmed about cancer.

Jody’s professional background is impressive. If anyone is capable of creating an online cancer community to support, empower, and motivate women with cancer, it’s she. With more than 25 years of experience in public relations and communications in health care, science and education, she brings a lot to the table. Diagnosed with a locally advanced breast cancer in l998, she pushed herself to survive and thrive, and now she offers women sage advice and information. I could list all of her impressive credentials, but the truth is that what she says stands on its own.

One thing I do want to mention, however, is that Jody is one of the founders of #BCSM, breast cancer social media. The virtual meetings take place on Twitter every Monday evening at 8 pm CDT.

bcsmcommunity.org.

(Alicia Staley and Dr. Deanna J. Attai are the other two brains behind this social media chat fest. I also met Alicia, a three-time cancer survivor, and I’m hoping to interview her at a later date.)

Sara: If you were to address the caretaker of a newly diagnosed woman, what are the most important things would you want him or her to know about breast cancer and its treatment?

Jody: From the point of diagnosis, both the caretaker and patient are in new territory and changing roles. There’s no doubt that cancer stresses a relationship. So first, process the shock and your own feelings as honestly as you can. Then it’s important to determine your strengths as a caretaker. Think about how you can best support the woman you love. Be honest with yourself and with her. As she has a treatment plan, and medical appointments begin to fill your calendar, think about your own plan to take care of yourself. Breast cancer treatment can go on for up to a year or longer. Your own efforts to maintain “islands of free time,” for exercise, a round of golf or other enjoyable activities are incredibly important. Many of us go into Super Hero mode when a loved one is diagnosed. That’s all right for a short period of time but not workable for the long term.
Sara: As someone who was a caregiver for a lung cancer patient, I can attest to that as being great advice. I think we really do have to face our own feelings as honestly as possible and to process them, so they make sense. A number of caregivers charge forward into the role without really understanding how complex it really is. If you don’t know what you can give, you can’t really find other members of the caregiver team to fill in the blanks. And you’re also right on the mark about Super Hero mode. This is a marathon, not a sprint, and we have to be prepared to go the distance.
What steps would you advise newly-diagnosed women to take to help them prepare for what lies ahead?

Jody: The first thing is how essential it is to learn about cancer, what the recommended course of treatment is and the range of side effects that might be anticipated. There are many different forms of breast cancer. Most don’t realize how complicated breast cancer is and that treatment may involve only surgery, or surgery plus chemotherapy, radiation and/or hormone therapy in various combinations. It’s a lot to take in at one time. But you don’t want to look back either, and realize that you could have made a better decision about treatment. You have time to think, learn, and talk with other survivors. There’s only a small subset of breast cancers immediate action is necessary.


The next thing to do is organize for illness, as I call it. I immediately got a large binder to hold information and medical reports. Then a friend created an email list to keep coworkers informed. Others find starting a blog is helpful. The key is that you reorder your priorities so that taking care of your cancer is at the top of the list.

Sara: One thing I learned from speaking to breast cancer patients is that treatment really is complicated when compared with other types of cancer. It all depends on what type of breast cancer a woman has. Some are more aggressive than others. And this is a disease that often is affected by hormones. It’s also a very intimate kind of cancer, which can change our perceptions of ourselves as women and sexual beings. Your point about rushing into treatment without understanding the big picture is well-made. If women aren’t at immediate risk, it makes sense to delve into all the information and weigh it before choosing the right course of action.

I’ve heard a lot of women say that “men just aren’t there” for them during cancer treatment, or fall short in terms of offering the right kind of support. Are there ways for women to close the gap on what husbands and boyfriends can’t do for them? Would a “cancer mentor” or “cancer buddy” make a difference?

Jody: This question is problematic in a sense. It’s not realistic to expect any partner to meet all of our needs even when we are well. Women learn from and lean on their friends all the time. This is the same in cancer. Finding other survivors is key. They can make good suggestions and provide reassurance that your family can’t. There’s nothing like walking along with someone who has literally worn the same shoes. Today with interactive platforms like Facebook and Twitter it’s easy to connect with other breast cancer survivors.

Sara: That’s true. With all of the complex realities of cancer, it really does help to speak to other women who have “been there, done that, and got the cancer tee shirt”. I’ve had other cancer survivors tell me that their families just “didn’t get it” when it came to the right support. Being able to reach out to experienced cancer survivors is very helpful. I’ve found that very few people who have gone through treatment are unwilling to share insights and offer solid advice. It really can demystify the process.
Women are so often the caregivers in the family, yet during cancer treatment they need their own nurturing. Are there strategies to help them get their own needs met and lose the guilt over what they can’t do for other people?

Jody: This is often the hardest for a woman if there are still children at home. At the same time, I’ve seen many families navigate this successfully. The shared characteristics were a sense of teamwork and excellent communication. So there aren’t any strategies per se, but a shared realization that getting through treatment is something that is tough and can be managed. It’s important for everyone involved to maintain a sense of daily life and order. And the funny thing about cancer treatment is that you aren’t sick all the time. There are good days and bad days. Once you learn how to best care for the low points following a chemo treatment many things fall in place. It’s also important to distinguish doing from being. You certainly can still love and be with your loved ones, that doesn’t change. But if a woman’s sense of self is tied up in everything she “does” for others then family will need to reorder its expectations. All of this is about facing change.

Sara: Maintaining a sense of daily life and order is all about imposing structure in the face of the chaos of cancer. Sometimes people surrender to the impact of the disease and that begins to drive the day. By taking charge of home life and making it as normal as possible, families are able to remind themselves of what is still “normal”, so cancer isn’t in charge.
I also like your point that you can learn to navigate through the low points of chemo. It helps to recognize the patterns of side effects and when they will pop up, so that you can make the most of the days when you are likely to feel good.

You make a valid argument that the whole family may have to “reorder” its expectations of a woman with cancer. We women sometimes take on the “doer” role and find it hard to surrender that because we get so caught up in “the rules” about who and what we should be. That can be a trap for many women, but it also sounds like families can get past that by letting go of  those expectations and working to help a woman get through cancer treatment. What’s the most important thing cancer taught you about life and love?

Jody: Cancer reorders your priorities. There’s no doubt about this. Nothing gets your attention faster than a potentially life-threatening condition. What I’ve seen is that the majority of women discover how strong they truly are. Early on, a lovely woman passed this on to me, “If you didn’t know how much you were loved before, just hang on. You’re about to find out.”


Those words have never left me. What a gift.

Sara: Truer words were never spoken, Jody. When cancer strikes a family member, it’s a chance to realize what matters most in life. We can let go of the petty nonsense and focus on using what we have to make a difference in this world. It’s hard to squander our lives when we know how precious time is, love is. Thank you so much for allowing me the opportunity to pose these questions. I hope women take heart from your words of wisdom and seek the support they need.

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British Columbia Cancer Agency cancer research cancer treatment colon cancer Dana Farber Cancer Institute Dr. Matthew Meyerson Dr. Robert A. Holt Fusobacterium Gina Kolata New York Times

CAN NEW RESEARCH IN COLON CANCER BE A REASON TO HOPE FOR A CURE?

If you’re caring for a loved one with colon cancer, you may take heart from new research. Two cancer studies have identified unusually high levels of a specific bacterium not usually found in the colon, Fusobacterium, in colon cancer tumors.

The study at the British Columbia Cancer Agency, headed by Dr. Robert A. Holt and his team, used genetic analysis to identify the unexpected connection in Canadian patients, according to a report in the NY Times by Gina Kolata:
http://www.nytimes.com/2011/10/18/health/18cancer.html

Another study at the Dana Farber Cancer Institute, led by Dr. Matthew Meyerson and his associates, found similar results in patients from the US, Vietnam, and Spain.

All patients studied had higher levels of the Fusobacterium in their tumors than found in normal colon cells. Dr. Holt found that some of his patients had an average of 415 times as many Fusobacteria as normal cells. Dr. Meyerson’s research focused on the DNA aspect. He was unable to determine if the Fusobacteria is the trigger of the colon cancer or the cause of it, but the findings are considered provocative. Why? Because this may allow researchers to develop a vaccine to prevent colon cancer.

One question that cancer researchers will have to answer is whether inflammation, caused by the bacteria, is the start of colon cancer or if it speeds the development of cancer. Both Dr. Holt and Dr. Meyerson admit uncertainty in the cause and effect of Fusobacterium in colon cancer. But at least scientists have a potential culprit to investigate, examine, and follow.

For families with a loved one who has this disease, it can offer hope that somewhere, somehow, at some point in time, there may be answers about colon cancer, and with answers, there can be better disease management, treatment, and hopefully even a cure. Never give up hope!