Author: sarambarton

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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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cancer caregiver cancer treatment caregiver education caregiver psychology Caring Bridge My Life Line Post Hope What Matters Now

How Can You Keep the Hope Alive During the Dark Days?

Cancer caregivers have a tough job, especially when things aren’t going well for a loved one. How do you make empty promises to someone who is clearly struggling to get through the pain and frustration of cancer care? The truth is you don’t.

One of the hardest lessons for any cancer caregiver to learn is that you don’t lie about life. For many cancer patients already frustrated and feeling betrayed by the disease, pretending that everything is hunky-dory is just the final straw on that camel’s back. It’s enough to send a cancer patient into the bluest of funks. So, what can you do?

Sometimes, when the elephant in the room is squeezing everyone against the wall, it’s best to change your focus. Instead of looking at what cancer is doing to your loved one, instead of feeling every ache and pain that cancer is causing — be it physical, mental, or emotional, it’s time to take a step back and look at something else. What is that something?

Your loved one still has dreams, wishes, and goals. He or she may have hit a temporary rough patch or is at a more critical stage in the disease, but don’t let the disease define your loved one.

Hope is more than just a wish that a loved one is cured. As humans, we don’t have that kind of power — it’s out of our hands. Hope is that little seed in each of us that love is greater than the sum of our parts. We need to constantly nurture hope in meaningful, realistic ways, not as some giant magical force that creates miracles, but as the human means to achieve little milestones that keep us going.

Focus on three things.

1. Comfort — not fake smiles and cheerful claims that everything is going to be okay. Get busy with palliative practices that improve how your loved one feels. If your loved one needs pain medication, oxygen, or better nutrition for the body, make that happen. When you do this, you send a very strong message that you are there for the long haul, and you are going to get busy doing what needs to be done. No empty promises from you — you’re on the job and you’re staying on top of things. For someone going through cancer, that can be so reassuring. The more comfortable your loved one is, physically, mentally, and emotionally, the better he or she will do, no matter what the circumstances. You may not be able to cure cancer or the side effects of cancer treatment, but you can and should provide comfort measures that make life better.

Build bridges between how the cancer affects your loved one now and what life was like before cancer. The better connected your loved one feels to his or her true self and the way things used to be, the less impact that cancer will have on quality of life. It’s a lot easier to remain hopeful when you find some successes that remind you of what life was like before cancer reared its ugly head.

Chemo brain a problem? Try chair-side notes, a message board, a calendar, and electronic reminders to help your loved one stay on task and avoid the embarrassment and frustration of forgetting. Make dictionaries available for crossword puzzle affectionadoes, suspend the rules and score keeping on games like Scrabble while you work together to find possible words, and provide tools such as calculators or financial software for checkbook balancing and money matters. Gently encourage memory to return while assisting with the (hopefully) temporary mental deficits, using tools and organization. Remember that the nervous system often gets battered during cancer treatment — never chide your loved one for forgetting something. Most of all, realize that many medication errors occur when a loved one is impaired by the effects of chemotherapy and stress. When you can negate as much of the difficulties of cancer with supportive measures, you are actually helping your loved one to remain hopeful that life is still worth living.

2. Caring — I’m not talking about your feelings, cancer caregiver. When your loved one is struggling, it’s not about you. Find out what hurts. Find out the options for fixing that. Sometimes the grief, the fears, and the uncertainty of cancer make our loved ones hurt more than the disease itself. Be sure to be a good listener for your loved one. Get to the heart of the problem, whether it’s pain, frustration, depression, or even concern for the future. When you listen to your loved one and hear what’s really troubling him or her, you’ll be able to show you care by taking steps to make positive changes. That’s empowering.

Sometimes the big problems can appear to be insurmountable, but if you tackle those little ones, it all becomes more manageable. Medications, side effects, new symptoms, and the great unknowns cause tremendous stress for cancer survivors, and that stress can actually bring life to a screeching halt. Break the problems down one at a time. Chip away at them. Consider there may be more than one option to address each one. When you lead your loved one to possible solutions and you show you are committed to meeting these challenges head on, you inspire hope in you and your loved one by demonstrating how much you care.

Whenever you’re overwhelmed with your own emotions, take it outside. Step away to do your crying. Do not share all that grief with your loved one. No cancer survivor needs the guilt or frustration of knowing that his or her disease is causing you misery. He or she is already over-challenged. Find caregiver buddies as your sounding board, in person, on the phone, or even via email and instant messages. Join a support group or reach out to other people who have been touched by cancer and ask for advice in coping. You probably already know people who have been cancer caregivers. Most of us understand the pain and we want to support you because we’ve experienced it first-hand. Ask us.

And if you find yourself sinking in quicksand, consider seeing a health psychologist, someone trained in helping families cope with serious medical issues. Some caregivers avoid talking to professionals, thinking they’ll be told to quit their caregiving because they’re so overwhelmed. A wise health psychologist can help you navigate through your need to provide care, the emotional entanglements that result from the difficulties you experience when having to provide it, and help you find ways to manage that care better.

3. Communicate — Understand and appreciate that you’re just one person. You should never be “It” for your loved one, especially if you’re physically, mentally, and emotionally up against the wall. Create a support team of people who can fill in the blanks, big and small. Don’t cut yourself off from the outside world. Give people the chance to do for you and don’t feel guilty that you need that help. Caring folks want to participate, to be there with you. You’ll have the opportunity down the road to give back.

Consider having a caregiver blog that allows you to share what’s going on with friends and family. here are just a few organizations that offer free websites and blogs to families during medical crises.

Having a private opportunity to inform people who care about what’s going on means that you and your loved one are not alone. You can receive messages, photos, and offers of support in ways that you can utilize, even when you feel stuck at home.

Best of all? When you keep family and friends involved in your loved one’s situation, they have the opportunity to share with you how much they really care. Even though you may find your fair weather friends all but evaporate during your loved one’s cancer treatment and management, you will find those gold and silver folks who offer encouragement, inspiration, and love to get you and your loved one through the dark days. Knowing that people are thinking of you as you struggle is important. It’s too easy to fall under the wheels of the cancer bus and feel like a victim when you’re cut off from the rest of the world. Even when things aren’t going well for your loved one, having people invested in both of you reminds you that love helps heal all wounds, because it encourages us to believe there can and will be brighter days ahead. That’s what hope does for cancer families.

For more help with cancer caregiving, visit The Practical Caregiver Guides

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advanced breast cancer breast cancer cancer caregiver caregiver education caregiver psychology family caregiver ovarian cancer

Can We Improve How Men Provide Care to Cancer Patients?

I’m a big believer in men. They can do some amazing things. Lord knows they’ve achieved some wondrous feats in life. But when it comes to being cancer caregivers, let’s just say the jury is still out on that, especially when it comes to women and “intimate cancers”, like breast, ovarian, cervical, and even colon. Nothing breaks my heart more than to hear a group of breast cancer survivors talk about the rejection they experienced from the men in their lives. It makes me want to go out and rattle some cages, asking, “What the $#@&* is wrong with you? How could you do that to her? Don’t you know how fantastic she is?”

Why is this? I have my own theory. We are, by nature, sexual creatures. We imagine, we fantasize, we dream of those perfect moments on some sun-drenched beach in the middle of nowhere, where wrinkles and cellulite don’t exist and “close encounters of the flesh kind” lead to wild and crazy passion, legs up in the sand. Real life very often doesn’t look like that. Emotions can get messy, especially when cancer’s involved and there’s great uncertainty in prognosis and diagnosis.

As a family caregiver, I’ve seen both sides of the story and I’ve reached a conclusion. Men are capable of doing more to really support the women they love and women need to appreciate that men provide that care differently. What does it take? Education on both sides. Best time to do it? At the beginning, in the early days of treatment.

Men need to know what the women they love are facing. How do they get that information? Let’s be honest. Most guys aren’t going to go to support groups to sit around and listen to emotionally-charged conversations about cancer. By nature, men tend to be proactive when it comes to problems. They’re constantly on the prowl for fixes. Cancer? Not always turned off at the flick of a switch. You can’t do X and be sure you’ll get Y as the result. You can knock your head against that tumor till the cows come home and you won’t put a dent in it. While most men are action-oriented, cancer support for women is often far more emotion-oriented. It can feel like oil and water mixing. Someone’s bound to slip on that slick and get hurt.

Men often process information and situations very differently than women do. Maybe that’s our biggest mistake as women, that we assume if men really love us they’ll do things our way, to please us. As someone who used to work with male psychiatric patients, I can assure you that it’s a hurdle not really worth the effort. The human brain is what it is. It’s wired as it’s wired. You can’t suddenly change the system. If the connectors and receptors in the brain don’t work that way, no amount of wishing will change that. Men are what they are, just as women are what they are. Your relationship up until cancer hits is pretty much what you might expect through treatment. Some men are talkers, but most aren’t. If the man who loves you does for you, you can probably go on expecting that. But if the man you love tends towards narcissitic behavior, if you have to fight your way to the mirror every morning, cancer’s not going to improve that, and your body image is probably going to take a hit over it.

We can and should take advantage of the way men tend to think to improve how they care for the women they love. I know a lot of men who are “hunters”. They may not sit around talking about their wives and girlfriends going through cancer treatment, but they will and do go on the Internet in search of information and answers. They will and do read personal accounts that provide a lot of technical information and concrete advice on what to do and how to get through it. Men need proactive tips and encouragement for helping their wives and girlfriends through cancer.

In other words, maybe it’s time we “train” men to be cancer caregivers according to their learning styles. Perhaps by taking an overwhelmingly emotional approach, we’ve failed to tap into the strengths that men can and will bring as cancer caregivers. Men are, by nature, usually good at “survivor” mode. They are body-observant. They eat, sleep, and hunt for what they need to live. Cancer is a very emotional disease and very often our introduction to it is chaotic and confusing.

What if we could reach out to men in the early stages of providing care and help them to find concrete ways to do it, ways in which they can make a positive difference for the women they love? I’ve had more than one man tell me over the years that women should never pay as much attention to a man’s words as his actions. Men will often say what women want to hear in order to get what they want. In cancer care, that’s not always a smart move. Women can feel tremendously betrayed when the words are hollow and empty.

In my conversations with men over the years, I’ve drawn a conclusion that may come as a shock to any woman who has felt her man didn’t care. Men care profoundly, deeply, sometimes even madly about the women they love and even the women in their families. But cancer makes men feel utterly powerless, and men don’t normally do “powerless” well.

I’ve seen that frustration up close with a man whose sister had a double mastectomy. His anger, his rage at what she went through in battling the disease was close to the surface. I could observe how raw this wound was for him. Why? Because he was so used to being a protector, the big brother who always looked after his baby sister. There was little he felt he could do for her as she faced this nasty foe. This caring, compassionate, strong man didn’t have the tools he needed and it infuriated him. It wasn’t that he didn’t care, it was that he cared so much, it was overwhelming. What happens when men have a much more intimate relationship with the women they love? What happens when husbands and boyfriends face that same powerful wall of emotions? Very often, as a matter of self-preservation, they turn off their emotions and just move on automatic pilot. That can come across as cold and unfeeling when the truth is they care too much to let it out.

I’ve heard women express their disappointment in how husbands, boyfriends, and even male relatives deal with their cancer. I definitely get it. Every woman wants to believe that no matter what happens to her, the men she loves will stand by her through the battle. So, how can we make that happen better?

Maybe we need to dispense with the myth that men and women aren’t equal as family caregivers. Just as male nurses and female nurses are equally capable of providing quality care in the medical setting, and male and female physicians must handle the same physical patient issues with equal competency, there’s no reason men can’t be wonderful caregivers. I still think that the style of care tends to be different, with some basic shared traits. Just as we used to assume that all women make great mothers, cooks, and homemakers, we have learned that’s not the case. Women aren’t born to be good with kids. It takes experience and education. Many of the women in my generation grew up taking care of siblings, neighborhood kids, and even worked jobs as teenagers that put us in the position of having to cope with runny noses, wayward children, and unexpected disasters (Lord knows I’ve pulled my share of kids off of roofs and stopped some of the world’s dumbest stunts just before that final idiotic ride off the ramp). We tend to forget that we learned how to care for the people around us. By the same token, I’ve known some women who were absolute disasters as caregivers. They were so anxious about their own needs, they weren’t capable of nurturing another person. A good caregiver is strong, with a thick skin, a hard head, and able to weather the storm, but you get that way by training, not by chance.

What does it take to be a family caregiver? Education, not estrogen. An understanding and an appreciation of what men and women can and can’t do. We should utilize men in the caregiver situation according to what we can teach them to do better. And we should recognize that, while they have strengths that can and will support women with cancer, they are not going to suddenly sprout wings and turn into cancer angels.

One of the things I always try to emphasize as a caregiver educator is that every patient needs to bring a team to the caregiver table. Every member of the caregiver team is going to be different from the other people involved, and folks will bring what skills they have to the table. The trick is to use the raw ingredients to make a complete meal, and that often means gaining new skills as you go. It’s important to recognize that every patient is different because of diagnosis, prognosis, energy level, independence level, emotional quotient, and a myriad of other factors. But if we begin to understand how to teach men to be better caregivers, not by trying to turn them into the female equivalent, but by using them in ways that make sense according to their capabilities, we should be able to produce some amazing male caregivers. It’s all about bringing out the best in the men who will care for these women with cancer.

Bottom line? We have some amazing wives, mothers, sisters, cousins, neighbors, and friends who have the capacity to survive cancer, and we should all strive to make the quality of their survival the best it can be. There are a lot of good, decent men out there who feel completely lost in the cancer fight. We can and should give them directions on what they can do better to support the women they love, through educating them in ways they can utilize to connect physically, mentally, and most importantly, emotionally. There will always be men and women who live life superficially, who can’t get past the scars, but for those people who hold promise as cancer caregivers, let’s empower them.

Categories
cancer bloggers cancer treatment Cancer Treatment Centers of America CTCA Blogger Summit

What Did I Get Out of the Cancer Treatment Centers of America Bloggers’ Summit?

Warm, sunny Arizona

I arrived home from Arizona at the Cinderella hour, having schlepped my overloaded carry-on bag through three airports in one day. You would have thought I was exhausted, wouldn’t you? Instead, I was still fired up — about the information I gained throughout the Cancer Treatment Centers of America Blogger Summit and the chance to speak with fellow cancer bloggers. As a cancer caregiver who believes strongly in education, I was already committed to helping cancer caregivers provide better care to their loved ones. Now I’m determined to do it even better!

One thing is clear to me after speaking with the participants. We need more education, more resources, more information about how to survive and thrive with cancer. We need the whole cancer community to come together and share — the newest treatment options, the clinical trials, the latest physical and occupational therapies, the best nutritional practices, and every little tidbit of hope we can find. That’s where we will find the strength and courage to get through this toughest opponent of health and well being.

Cancer Treatment Centers of America posted many of the speaking events on their Livestream site. You can watch them for yourself and get some perspective:

Cancer Treatment Centers of America Bloggers’ Summit 2013

New England’s winter chill — brr!

Maybe it’s because I’m back in winter mode, no longer soothed by the warmth and sunshine of the medical center’s campus, but I can look out on the horizon here and find the parable. As individuals trying to reach out to those who can benefit, we are but a few whispers in the winter wind. But when we join together to raise our voices, we become a choir that rises above the chilly landscape of cancer. We can and should raise all hearts and minds to focus on getting this done. We can provide the warmth of human contact and courage by reaching out. Uniting with other people who are determined to spread The Word about Cancer (there’s a great name for a cancer community!) is a powerful thing. We aren’t folks who are interested in our own glory or making a name for ourselves as individuals. We are people who want to advocate because we believe we can and will make a difference.



Matt Zachary, Professional Musician and CEO of Stupid Cancer, playing one of his own compositions at the summit

We know the why of this — people need the best information and education in order to fight the disease in a meaningful way that preserves quality of life. That’s a big part of the reason for the CTCA Bloggers Summit — we all sat down together to brainstorm for answers. But how do we get these things? When do we get these things? And more importantly, where do we find them and who provides them? Clearly, social media and the Internet are technology tools that we can harness to provide them, and the various conferences, such as the Stupid Cancer OMG Young Adult Cancer Summit, can make a difference. But we need more — we need the real research into what helps cancer patients to stay in the game and go from sprinters to marathoners. We need to know what practices, medical and supportive, improve patient outcomes. And we need that information to be available to people everywhere — not hidden behind a tree or locked in a secure vault somewhere. It should be out there and accessible to anyone with digital connections.



Bloggers Brian Simpson, Catherine Blotner, Lockey Maisonneuve, and Mailet Lopez

One thing that struck me as I had the chance to network with other cancer bloggers who are cancer survivors is that they come in all shapes, sizes, ages and stages of cancer survival. Many had multiple occurrances over many years. That’s a lot of experience between them. The cancer survivors I met were prepared to have a real and honest dialogue with CTCA team about it, because they want to go the distance. They weren’t shy about voicing their vision. Overwhelmingly, they share one thing — a passion for helping others overcome better than they did.


Rob Harris bellies up to the popular smoothie bar
 

My fellow caregiver attendees and I can also bring something important to the table in partnership. As much as it matters that cancer patients network with survivors, families with a loved one in cancer treatment or management need to understand the issues and how they affect the whole person and the whole family. Nothing saddens me more than to hear about cancer patients feeling abandoned and alone. The better able family members are to understand and appreciate what cancer does to a human being, the more likely they will be to offer the right kind of support to their loved ones.



Alicia Staley in the Arizona CTCA’s lobby

We are on the cusp of the New Dawn in cancer treatment and management. Cancer survivors today are a new breed, and long-term management of symptoms, side effects, and stress is critical to being as healthy as possible.  In the next few weeks, I will introduce you to some very impressive people on the front lines of this people-powered movement. I think you’ll enjoy learning what they have to share with you.



The writing is on the wall — real messages from real cancer families at CTCA’s Arizona center

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

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Bob McClendon cancer caregiver cancer nutrition Cancer Treatment Centers of America caregiver education CTCA Blogger Summit Frank Caputo Hope Springs Organic Farm McClendon Select organic farming

Getting Down on the Organic Farm with Cancer Treatment Centers of America

How many cancer treatment centers can boast they have a Culinary Institute of America chef like Frank Caputo? Better still, how about an organic farm just out back of the hospital? Cancer Treatment Centers of America can. The Western Regional Medical Center in Goodyear, Arizona has both. I got an up close look at the operation while at the CTCA Blogger Summit.

Bob McClendon, a former pharmacist-turned-organic farmer, is in charge of Hope Springs Organic Farm, a 25-acre spread. As you stand looking over the fields, you can see the neat rows of vegetables planted by son Sean. It’s very much a family business. (Daughter-in-law Kate is also involved. She writes a nice blog on organic produce http://mcclendonsselectblog.com/ )

On the day I was there, Bob’s grandson was riding his bike through the property, even as the GPS-equipped tractor was zipping along. The GPS helps Sean plant straight rows — the McClendons take their organic farming very seriously. Every drop of water is monitored and utilized to prevent waste and to nurture the tenderest of vegetables under the hot Arizona sun.

Chef Frank Caputo is the real genius behind the farm. He pushed Bob to join the endeavor. From what I saw, it was well worth the effort. Frank was more than happy to offer a cheddar cauliflower to pass amongst the crowd. He also grabbed a handful of assorted greens, the very produce that would go into our buffet lunch.

What surprised me most about Hope Springs Organic Farm is the size of the operation, even in its early stages. When you look out of the rows of plantings and then you step into the dining room, you don’t have to worry about how long the vegetables have been stalled on a loading dock in some warehouse. This is freshness at its peak. Visitors are welcome to walk over to the farm, and when we were there, I saw folks do just that.

The lunch we were served was impressive, from the grilled cauliflower to the Swiss chard salad to the healthy smoothies. Clearly Frank Caputo and his team work hard to make sure patients, staff, and visitors eat well.

Just to be sure, I took a tour of the “food court”. I wanted to see how other people were reacting to the offerings. At a large salad bar well stocked with choices, a young boy of about ten loaded his plate. (As a salad affectionado, I can attest to the fact that the salad bar meets with my approval.) He clearly had eaten here before, because he was determined to get “the good stuff”. The number of food stations and choices was impressive. A number of staff members and patients were ordering specific items.

What I loved best? One of my fellow bloggers (currently a patient at the hospital) can’t digest certain foods while she’s undergoing cancer treatment. Frank’s right-hand man brought out platters of steak and chicken to make sure she had the proper nutrition.

One of the toughest things for cancer patients in treatment can be the nutritional issues. Food can be a struggle to get down. That’s where Director of Nutrition Sharon Day comes into the picture. She works with patients and their family caregivers to offer choices at the hospital and at home that will meet with the patient’s palate and ability to handle the heavy lifting. The truth is not everyone has Chef Frank Caputo’s skills. Sharon is more than happy to offer recipes, tips, and ideas for the amateur and the experienced. She helps adjust the diet to accommodate the medications used and the patient’s ability to swallow, to digest, and to take in enough calories to handle cancer treatment. One of the biggest issues for cancer patients is getting the right nutrition that will enable cancer treatment to work effectively. That puts her on the front line of every patient’s medical regimen at CTCA.

The attention to detail at CTCA is very impressive from what I’ve seen so far. I’m comparing it to other cancer treatment facilities I’ve experienced as a caregiver and as an educator. But I think it’s the staff that stands out the most. People really do seem to enjoy their work, right down to the sweet young woman in the ladies room, who cheerfully answered our questions about a lotion dispenser on the wall. This is very much a “people place”. It’s not going to change the fact that cancer is cancer, but it could help you endure cancer treatment in a much more pleasant atmosphere.

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advanced breast cancer breast cancer cancer caregiver cancer treatment Cancer Treatment Centers of America CTCA CTCA Blogger Summit Goodyear AZ service dogs Western Regional Medical Center

Cancer Treatment Centers of America Honors Service Dog Pee Dee

I admit it. I’m a people watcher. I like to get the feel of a place by observing the comings and goings of people. At the moment, I’m at the Cancer Treatment Centers of America Bloggers’ Summit at the Western Regional Medical Center in Goodyear, Arizona. During a break in the many presentations involving cancer technologies, I stepped out into the lobby, sat down, and just watched the passing parade. I wasn’t expecting pooches in service “uniforms”.

I had already found the two fish tanks flanking a big fireplace on my first visit. Fish gotta swim and they do here. The bright colors attract the eye and draw you in. I always like to see signs of life in a hospital, and that was a positive impression of the Western Regional Medical Center in my book.

 

But yesterday, on my second day here, I saw something I never thought I would see — a retirement party for a dog. Pee Dee, the chocolate lab, was hanging up his hat as a service dog at the hospital.

All the other dogs were there for the party, some frisky and tail-wagging, others gently awaiting your approach. It was a nice bunch of pups, and it was clear from the reactions of the people passing by that these dogs were well-loved, by patients, by family members, by staff.

I watched all the hands come out to greet the dogs. Some people stopped and bent down to say hi. Others gave an affectionate pat or a little scratch behind the ear in passing. The ladies who accompanied the service dogs were cheerful and kind, too. It gave the lobby of the hospital a friendly feel. This is no cold, sterile medical environment. And all that was before the party started.

It was held outside, in the courtyard, a space filled with barbecue grills and benches, just off the sports area, where a putting green awaits. (The current LPGA champs have nothing to fear — it took about 50 shots to make my only hole-in-one of the day….) There was cake, a small ceremony, and lots of chuckles and cheers for Pee Dee.

Why do I write about a retirement party for a service dog? That’s what you get at the Cancer Treatment Centers of America facility here in the Arizona desert. People who stop for ten minutes to thank a pup who has cheered patients through the cancer treatment process. It’s about connecting to life, to the little things we can and should celebrate together. Warm hands, warm hearts help cancer patients get through the challenges of cancer treatment, but they also get the staff through, too.

That’s why I like to just sit sometimes and observe, especially when I’m in a new place. I don’t want people to tell me what it’s like to be there. I want to see it for myself. I want to watch what patients and family members do, to see their reactions to a place. Are they comfortable or miserable? You can see cancer patients in the garden, sitting at tables in the shade, enjoying the day, or wheeled out in their wheelchairs by loved ones. This doesn’t feel like a hospital, even though I know it is. It’s a place where patients can take a break and get outside on a pleasant day — Arizona has a lot of those at this time of the year. It’s a place where even a dog like Pee Dee gets his due.

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cancer caregiver cancer management Cancer Treatment Centers of America caregiver education CTCA perception personality

What Roles Do Personality and Perception Play in Cancer Treatment?

Is cancer a case of mind over matter? Can we engage one to more positively affect the other? And if so, what roles do personality and perception play in cancer treatment?

Here I am in sunny Goodyear, Arizona, at a Bloggers’ Summit sponsored by Cancer Treatment Centers of America. The weather is fabulous, especially given all the chilly winds and white snow I left behind. Last night I sat out under the stars with the group of fellow bloggers, almost all of them cancer survivors. We laughed for hours, sharing stories. There wasn’t a Shrinking Violet or Vinny among them. Each has his or her own story about cancer, and in coming together, it was an engaging banquet of food for thought.

Which makes me wonder about the power of personality and perception in fighting cancer. We can’t really change personality. People are who and what they are. Each of us sees the world in unique ways, and once you understand where we’re coming from, you can adjust your message to be better heard. But it’s never one-size-fits-all. Men and women tend to process information differently,but within that construct, individuals are sometimes stronger in some areas than others. When I say the word “cancer”, your perception of the disease is based on your own personal experiences with people you know who have battled it, but also on what you know about the public information that’s out there. What pieces of the puzzle are you missing? What you don’t know can and will hurt you and your loved one, especially if you’re wrong in your perceptions.

As a cancer caregiver, you can’t change the personality of your loved one, nor should you, but will an understanding of him or her help you provide the right kind of support? It makes me wonder if there should be a different approach to cancer for a Type A personality than for a Type B personality. Maybe people who are go-getters will do better if they are armed with information they can use to motivate themselves — statistics, goals, and your basic business plan. That’s just how they roll in real life and we should respect that. Maybe people who are go-with-the-flow-ers will do better if they are allowed to function in the way that enables them to do what works for them — forget about the details and the Devil, and just live in the moment. That’s how they do things and there’s nothing wrong with that. To each his own.

Over and over again last night, I heard a similar theme. Cancer patients and survivors get treated differently than people without. Right there, you know that’s going to have an impact on life. We aren’t at the point where we ignore cancer once it’s happened. It’s like stink on a skunk, trailing behind the cancer patient. One whiff and folks disappear. The last thing anyone wants is to feel people pulling away emotionally, mentally, and sometimes even physically. That’s a lot of stress to live with when you’re already trying to get back to the new “normal”.

What does it take to rise above that and engage the mind in the healing process? If you think about the role the brain plays for the human body, it’s really a head game in many ways. The head operates the rest of the body systems, so tapping into that energy and directing it in positive ways should make a difference, shouldn’t it? If it’s the head making the decisions about what happens, how does the brain move through the decision-making process to the best advantage?

We sometimes seem to forget the brain is divided into two hemispheres, right and left. Concrete and creative. That’s where perception comes into play. Perception is information-based.  And when there’s a lack of information, the creative brain will fill in the blanks. That’s sometimes dangerous, because we can begin to believe things that just aren’t true. The body will act on the misperception. If you input more information and expand the knowledge of a subject, the brain will adapt to accommodate the change, but only when there is recognition things have changed. The mind has to send a signal — “Hey, guys! We’ve got new intelligence on this thing. Look it over and make adjustments.” The more you know that is evidenced-based, the more rational the decision-making. You can actually change a person’s emotions by changing his or her perception of the subject. All the more reason to make a positive effort. So, what does happen when you have strong personalities that can weather the storm and see beyond it? That’s when your mind works with your body to overcome the challenge that is cancer. You have to believe that what you’re facing is “doable”, and even more importantly, worth doing.

The people I sat with last night are the living proof the battle is worth it. Vibrant and alive are two words that describe them. But their cancer experiences surely played a role in awakening the personality to take on the fight. For several people, it seemed that cancer put a focus on their lives they didn’t have before. They no longer waste time on people who waste life. They take more chances because they want the chances they take to mean something. They live a far more intense experience because of cancer, not in spite of it. Maybe they would have done the same if their lives had been challenged by some other life-transforming moments, because it would have given the personality a chance to strut its stuff. In that sense, it’s the challenges, not the cancer, that benefited the individuals.

Maybe the more we understand how cancer works, the better we can teach cancer management. We can begin to understand that cancer didn’t just appear over night. It took it’s time setting up shop in the body, hiding out, lurking. When the concrete mind begins to pay attention to new symptoms, when the creative mind begins to believe it’s possible to change the outcome, won’t the mind be better able to direct the body to focus on what’s important at each moment in time, whether it’s taking the difficult cancer treatment that will make a difference or learning to relax and not let the fear fill your head?

A house divided can’t stand. The structure, the foundation, will eventually fall. A cancer patient at war with his creative and concrete minds will be struggling to understand what the immediate picture is and what the future picture can be. What you believe about cancer is every bit as important as the scans, blood tests, and other measures of the disease within the body. If your perception is based on a fantasy, that cancer can be wished away magically, the concrete mind isn’t likely to buy that claim. If it’s based on evidence that what is done can and will have a more positive outcome, the creative mind can begin to look for ways to work with the concrete mind to get the body what it really needs. Does the personality help to determine how that perception plays inside the head?

As cancer treatments have evolved, our understanding of the types of effective medications, radiology, and surgery have also expanded. We know cancer isn’t one disease — there are hundreds of types of cancer. The more we hone how well specific treatments work on specific cancers, the better the outcome. I believe the same is true for the cancer survivor’s mind. The more we understand individual differences in human beings and how their brains process information on cancer, the better we can help and support our loved ones to fully engage according to their ability to perceive the disease. Some people are always going to want to know every little detail, others are not. When we respect our loved ones’ comfort zones and apply our care to fit their real needs, we’re giving them the real support that will help them face this foe.

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cancer caregiver cancer treatment Cancer Treatment Centers of America caregiver education CTCA Blogger Summit

Cancer Treatment Centers of America — When Opportunity Knocks

I’m a big believer in taking chances when the risks seem reasonable and the odds are in my favor. I’m not much of a gambler. I don’t play the slots or cards, especially not for cash that should go to pay bills. But I also believe that when opportunity knocks, it’s okay to answer the door, even if you check the peep hole first. That’s why, when Cancer Treatment Centers of America asked me to their Blogger Summit, I agreed to go.

I’ll admit it. I’m very curious about what CTCA does differently. I’ve looked at the website several times now, but I’m still not sure what to expect.

Cancer Treatment Centers of America

Most patients travel for treatment. The regional centers have accommodations for patients and family. They also have things like laughter therapy, a hospital garden, a very impressive nutrition team, and so many other things that I believe can be therapeutic for cancer patients and their families.

What does CTCA do for family caregivers? That’s what I want to know. I have a theory that if you educate a family caregiver to take care of a patient with the best information and support, if you give that person the physical guidance and support he or she needs to help a loved one get through cancer treatment, there’s a far greater chance that the patient will comply with medications, nutritional intake, pain management, and stress reduction. But it’s more than just a bunch of social workers and nurses giving lectures in a hospital setting. It’s networking, hooking experienced caregivers up with newbies, offering insight and inspiration for everyday life. It’s a cup of coffee and a shoulder to cry on. It’s someone who understands that it’s frustrating not to be able to get everything done on a to-do list because there are so many priorities and everyday issues get kicked to the curb.

Every time I’ve checked on this hospital or that hospital, it seems like the caregiver education just isn’t available. There might be little meetings here and there, but no real concerted effort to hook caregivers up in a  meaningful way that makes a real difference. You can talk about stress reduction all you want, but in a business that provides paid services, many health care providers would rather collect fees for fixing you than preventing you from breaking down in the first place, and that’s a shame, because many caregivers burn out too soon. Maybe CTCA is different. Maybe they have a structure that supports a caregiver outside the hospital setting. We’ll see. If they don’t, maybe they’re open to starting one.

What most medical people don’t understand about family caregiving is that it’s really not about medicine. It’s about people. What does it take to help another human being survive under difficult circumstances? How do you manage a household while helping a loved one undergo some of the most rigorous medical procedures available? Most family caregivers learn through the School of Hard Knocks, when mistakes are made. The longer you’re a caregiver, the more opportunities you’ve had to learn. Me? I should have a PhD. in caregiving. Lord knows I’ve seen my share of challenges. But I also believe that caregiving can be and should be taught.

If I could make one thing happen for family caregivers taking care of cancer patients it would be this — a study to determine if caregiver education can actually reduce mistakes and improve cancer patient outcome. I’m not talking about some touchy-feely, “gee-aren’t-we-swell” kind of study. I want to know if the right caregiver education can actually improve survival rates. Can we prevent unnecessary suffering and medical complications by teaching family caregivers to help manage care at home?

Sound crazy? Well, think of it this way. The greatest problem for most cancer patients isn’t that the cancer sneaks up on them overnight and steals their lives. It’s getting through the long haul. And to do that takes good medicine, good support, and good caregiving over time. Rome wasn’t built in a day, and cancer isn’t cured instantly. There’s no magic wand.

I’ve heard so many family caregivers say they were terrified, didn’t know what to do, didn’t know where to turn for answers — not for the medical issues, because most health care providers are good at helping with that. No, what I hear most from family caregivers is they didn’t know how to get it all done — the “living with cancer” part of things.

Living with cancer is more than just those trips for treatment or the instructions on how to apply lotion to radiation burns. It’s about understanding what disease does to a person, to a family, changing the dynamics in so many ways. Up until that diagnosis of cancer, life seems simple, and after those words are spoken, it’s forever changed. That’s because you often feel you’re living in the shadows until those scans show no more evidence of the disease. Borrowed time and uncertainty seem to become the norm for many cancer families, and it’s really tough to cope with that on a daily basis for any length of time. If you’re not used to running and you suddenly enter a marathon, you will fail on so many levels and put yourself at serious risk. Training matters.

So, how does CTCA reach out to family caregivers in a meaningful way, above and beyond holding hands and commiserating with them? What education do they offer in terms of helping family caregivers organize daily life around cancer treatment and balance family needs, so that the cancer is not the focal point of every conversation?

Maybe this is an opportunity for me to spread the word about caregiver education and the benefits of really supporting the families. I believe that family caregivers actually have the ability, with the right training, to not only advocate for their loved ones, but to be the eyes and ears for the treatment team, but only if they understand that responsibility. In order to do that, family caregivers have to pay attention to the physical signs they see and they have to be able to communicate effectively with the health care providers. If I’m right, that cancer survival can be improved by educating family caregivers, it will be because patients and their families feel confident that it makes a difference to take a proactive stance when it comes to cancer. A good part of the resistance to that approach is always the fear that families have that it’s too late, the cancer’s too strong. If CTCA accepts patients who are motivated to fight a survivable cancer, and those patients have cancer caregivers with real tools to help them get through it, maybe this is a part of the new cancer treatment horizon, that survival depends on what’s done for the whole person, and the better the resources, the better the outcome. I’m looking forward to finding the answers.

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

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cancer caregiver caregiver education caregiver psychology caregiver stress

Does Motivation Matter in Cancer Management?

Recently I got a comment from cancer caregiver who was finally able to come to terms with a friend’s death following a long battle with the disease. It raises an important issue, one that deserves some serious consideration. What happens when a cancer patient gives up the fight?

I remember when my very frail mother was facing cancer treatment on that first day. The radiologist gave her a lecture, in the kindest possible terms, that set forth an important reality. Unless she was willing to do the work, there was no point in him treating her. Sounds cruel? It was actually a positive thing to say to a woman who was struggling with her feelings about having cancer. He put her in the position of deciding whether or not she wanted to fight. That was very empowering for her, because it stripped the cancer of all control and returned some of it to my mother. No one could do the work for her. We could only support her.

He also said that she had to treat eating as part of the prescription for improving. Just as she would expect to take a pill because it would make her better, she had to force herself to eat, even when she didn’t feel like it. We worked hard to find foods she could tolerate, and in those moments she balked at just one more bite or one more sip, I would simply remind her that it was good medicine for her. “The doctor said….”

My mother did improve. Despite many complications, she outlived her prognosis by several months, time she used to get her affairs in order, to finish what mattered to her, and to decide when she was ready to stop fighting. And in between finding out she had cancer and succumbing to it, she managed to fit a lot of living into her “to-do” list. You can really only enjoy life when you appreciate it.

Cancer patients often have mixed feelings about what to do when they receive that dreadful news. That’s certainly understandable. It’s a scary road. Some cancers are treated aggressively and the course can be difficult to endure. Patients have to be committed to doing the work involved.

As cancer caregivers, it’s important for us to understand the issues involved for our loved ones. What is the treatment? What does it take to optimize the outcome? And what happens when a patient begins to give up?

Not every cancer patient has the same tolerance level for treatment. Some patients are tougher, hardier than others. Some are too timid, too ready to quit when there’s a light showing at the end of the tunnel. And some are just plain tired of fighting, especially after the years begin to add up.

If you find your loved one is feeling like it’s time to raise the white flag, you need to take a hard look at what’s going on. Are there new symptoms popping up? Is depression sapping your loved one’s energy? Is the treatment too harsh for your loved one’s battered body? All of these things can affect a loved one’s motivation to continue the battle, but not all of them are necessarily physical limitations to how far a loved one can go in continuing cancer treatment.

First and foremost, what’s really at the heart of your loved one’s fears? If it’s a physical issue, it needs to be addressed by the medical team. Some drugs aren’t well-tolerated by patients, and rather than stick to the course, it’s likely the oncologist can make a change and improve your loved one’s comfort. When comfort improves, motivation often goes along for the ride. Sometimes, if a new spot of cancer pops up, it can be easily treated, but only if the cancer team knows about it.

But when it comes to the spirit, things can become very complicated. A good cancer caregiver is an advocate for positive action. Sometimes that means hearing what the heart is really saying. You can’t help your loved one fix what’s broken if you don’t understand what the problem is. Any cancer patient can feel overwhelmed at times by the disease and its treatment. Even without cancer, some people find life challenging. Knowing the difference between a blue funk and something more serious is important. We cancer caregivers walk a fine line when we encourage a cancer patient to go on struggling in the face of overwhelming hardships. In the end, it’s really the cancer patient who decides when enough is enough.

That said, it all comes down to more than just motivation. It also comes down to finding the best treatment options for a patient who is willing to do the work. Cancer treatment is work. Some things have to get done. Compliance with chemotherapy, radiology, surgery gives a patient a better chance to make it through to the other side.. Good nutrition to maximize treatment options and minimize side effects means a patient is going to feel consistently better than someone who doesn’t make the effort. But most of all, knowing that the treatment options were thoroughly vetted means a patient is likely to remain motivated to get through it. We hear that phrase a lot, “the best doctors”, but there’s a good reason why it’s important to seek the best medical care you can find. Those “best doctors” are up on the latest treatments, the clinical trials available, and the options that offer the best hope. And without hope, it’s hard for a patient to stay the course in cancer treatment.

Hope isn’t something borne of magic fairy dust and imaginary vibrations. Hope comes from a deep-seated belief that what is being used is tried and true. It doesn’t involved guess work or experimentation. Hope is all about “this is what has been shown to be the most effective way to treat this situation”. When you and your loved one take the time to to do the research on what’s available, it’s much, much easier for you, as cancer caregiver, to help your loved one stay motivated, even on those tough days.

Think about that. If your loved one doesn’t believe that what he or she is going through is going to make a difference, it’s more likely that your loved one will surrender when the going gets tough. Like the Little Engine That Could, your loved one has to feel that “I think I can, I think I can, I think I can…” until it becomes “I know I can, I know I can, I know I can….” We’re all human, and we all sometimes cave into our emotions, ignoring physical evidence because we feel something. That’s why, when motivation starts to slip, it’s important to help a loved one focus on the facts. What do the tests show? What’s the normal course of action? How long does it take to notice positive results? Start with the best medical doctors and the best medical treatments to insure that your loved one remains motivated throughout treatment.

Each of us wants to feel that life is worth living because that’s what gets us out of bed in the morning. We normally look forward to the start of a new day because we’re motivated to make the most of it. Sometimes, when cancer totally overwhelms the body, mind, and spirit, it rob us of that joie de vivre. If your loved one is struggling to find a reason to go on fighting, don’t despair. One way to recapture some of that motivation is to put the cancer aside and just live like it’s not there. Make a habit of ignoring cancer at least once a week. Start small, an hour at a time. Build it up until you have a “cancer-free” morning, afternoon, or evening, not because you’re in denial that your loved one has cancer, but because it will give your loved one a chance to let go of the disease for just that little while and practice living again.

If you find that he or she is unable to do this, it may indicate that it’s time to speak with the medical team about options, such as a session with a health psychologist, someone who understands that disease affects the psychological health of patients (and sometimes caregivers). Living with cancer is important. Otherwise, your loved one is just surviving, and that’s no fun. Carpe diem!

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

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cancer specialist cancer treatment caregiver education Dr. Robert E. Bristow gynecologic oncology National Comprehensive Cancer Network ovarian cancer

The Right Treatment for Ovarian Cancer Can Save Lives

Cancer caregivers, if your loved one has ovarian cancer, there is something you need to know, something that could save your loved one’s life. A new study presented to the Society of Gynecologic Oncology reportedly determined that most women diagnosed with ovarian cancer are not receiving treatments that could extend their lives by a year or more.

The reason? These women put themselves in the hands of physicians without enough experience to treat the disease effectively.

The most effective treatment for ovarian cancer is very complex. It involves surgery, called complete debulking, to remove all evidence of the cancer, and this sometimes includes other organs. The reason for this is to enable the intensive chemotherapy the best chance to succeed in eradicated any remaining cancer cells.

What should women who receive a diagnosis of ovarian cancer know? It matters who provides the treatment and what that treatment is. According to the study, one reason for treatment failure was that the many women were operated on by general surgeons or gynecologists, rather than by gynecologic oncologists. Very often, gynecologists and general surgeons practiced conservative surgery, only removing a portion of the diseased tissue. According to the study, led by Dr. Robert E. Bristow of the University of California at Irvine, more than 80% of the women were treated by doctors who lacked the expertise of gynecologic oncologists.

In general, a surgeon who performs less than ten of these surgeries a year is less likely to stick to the guidelines set by the National Comprehensive Cancer Network, which  recommends specific protocols for ovarian cancer treatment, according to each stage of the disease.

Ovarian cancer is reportedly a disease that is less likely to spread, through the lymph nodes and bloodstream, to other organs in the body. This means that a woman who receives the right treatment has a far better prognosis, not just to gain an extra year or two, but to survive and manage the disease.

Cancer caregivers should always be proactive in helping a loved one understand treatment options and that sometimes means asking the hard questions, especially when it can affect a loved one’s quality of life. How often does the specific physician treat this type of cancer? How often does the medical center treat these patients? What is the survival rate for these patients?

Many patients can and do travel to receive the right cancer treatment, especially for complicated cases. This is one situation in which you can actually provide your loved one with a better chance to survive, so it pays to do your homework. Don’t just accept the idea that the first doctor to set eyes on your loved one is the right care provider. Don’t rush into treatment because fear drives the bus. Educate yourself. Do the research. Understand what the National Comprehensive Cancer Network recommends for standard treatment of your loved one’s cancer. Check out their website:

National Comprehensive Cancer Network

They have a great section on patient resources, providing information on everything from clinical trials to NCCN cancer centers near you. Be proactive for your loved ones, cancer caregivers!

For more help with your caregiving, visit The Practical Caregiver Guides