Survivorship

 

Survivorship has become a hot topic in the cancer world.  So what exactly is it all about?  Survivorship is different for each individual cancer survivor.  For some, it is adjusting to the “new normal” once treatments are completed.  For others, it can mean getting back to life as it was before cancer. One important part of survivorship is coping with the diagnosis of cancer and all the changes that have occurred physically, emotionally, and/or spiritually.

I had a wonderful support system during my cancer journey.  There was always someone there with me.  I never had to face any of it alone.  My mother was my biggest support.  I know that I was fortunate and not everyone has this kind of support.  However, even though I had such great support, I still found difficulties in my transition from cancer patient to cancer survivor.  My journey changed my life completely. It affected every aspect of my life.  I was different physically, emotionally, and spiritually.  I had to find my “new normal”.  Since then, I have found journaling to be helpful.  I wish I had written down my thoughts and feelings and things that happened when they actually happened.  I recently attended a workshop at The Writer’s Colony at Dairy Hollow in Eureka Springs, AR.  The workshop was titled “Survivors Getting Stronger”.  I had the privilege of spending the day with other survivors and sharing our stories with each other.  We laughed, we cried, and we wrote.  Below is a piece of what I wrote that day…

Bad Hair Day

I got up out of bed and headed for the shower. I had another full day of treatments. I was in the shower washing my hair, when I realized that my hair was starting to come out in my hands.  My heart sank and I felt the tears begin to stream down my cheeks.  There was so much hair falling out.  I couldn't stop myself from running my hands through my hair over and over again. I thought to myself, I'm going to be bald if I don't stop.  I knew this day was coming, so I was surprised at my emotional reaction.  To my surprise, when I got out of the shower and looked in the mirror, I wasn't bald. I couldn't even tell that my hair was coming out by looking, but I could sure feel it. My scalp hurt.  It felt like I had my hair up in a super tight ponytail all day and had just let it down, only a hundred times worse. I finished up in the bathroom and headed to the bedroom to get dressed. I was sitting on the bed trying to muster up the energy to get my clothes on, taking a shower had sucked up what little energy I had started the day with.  My mom got there to pick me up. She came in to my bedroom and began helping me dress. I reached up and touch my hair.  As I pulled my hand away from my head, the hair came with it.  My mom just looked at me and assured me that it would be ok.  She was so positive and encouraging. A few days later, we were once again heading to treatment.  I had a radiation treatment at 9 in the morning. It was late summer, so the mornings were humid but mild. We had the windows rolled down enjoying the morning breeze.  I caught a glimpse of something from the corner of my eye in the window.  I turned to see what it was.  I started yelling for my mom to stop the car as I frantically tried to get the window rolled up.  The car came to a stop and my mom was repeating “What's wrong? Are you ok?”  I calmed myself long enough to say, “My hair is blowing out the window!”  We just looked at each other for a moment and then we started to laugh.  We laughed and laughed until we were crying.  

Christy Scarrow, LSW

 

National Cancer Survivors Day® is coming up on June 2nd.  Christy Scarrow is a Licensed Social Worker and the Manager of Patient Services at Hope Cancer Resources and is a Cancer Survivor.

Exercise for Cancer Survivors

We all know by now that having an exercise routine helps to keep us healthy. Regular activity can reduce our weight by burning fat and building lean muscle, decrease stress levels, and encourage healthy operation of our bodies' cardiovascular, gastrointestinal and nervous systems... all components to a cancer-preventing lifestyle, according to a variety of research studies.

In addition to the cancer prevention benefits of exercise, it has been found to be beneficial to those already dealing with the disease. In two recent studies reported by MedpageToday.com, participation in at least twelve weeks of exercise was associated with significant improvement in overall health-related quality of life for cancer patients and survivors.

In a study of survivors, the researchers were looking at physical activity that included strength training, resistance training, walking, cycling, yoga, Qigong, or Tai Chi. They found that exercise had a positive impact on both overall health-related quality of life and more specific emotional well-being areas such as body image, anxiety, fatigue and self-esteem.

In the other study, which included only current patients, the results were similar to those seen in the survivor study, with improved overall health-related quality of life being reported at twelve weeks. According to the researchers quoted in the MedpageToday.com article, effects of exercise were more pronounced with moderate or vigorous intensity workouts than with mild exercise programs.

The American Cancer Society provides tips on exercising while undergoing cancer treatment, and we're sharing a few here. Visit their site for more information.

First, you should always check with your doctor before starting any exercise program. This is especially important if your treatments can affect your lungs (such as the drug bleomycin or radiation to the chest), your heart (such as the drugs doxorubicin or epirubicin), or if you are at risk for lung or heart disease.

• Your cancer care team will check your blood counts during your treatment. Ask them about your counts and if it's OK for you to exercise. Do not exercise if you a low red blood cell count (anemia).
• If you have low white blood cell counts or if you take medicines that make you less able to fight infection, stay away from public gyms and other public places until your counts are at safe levels.
• If you are dealing with fatigue brought on by treatment and don't feel up to exercising you can try to do 10 minutes of stretching exercises each day instead.
• Do not use heavy weights or do exercise that puts too much stress on your bones if you have osteoporosis, cancer that has spread to the bone, arthritis, nerve damage, poor vision, poor balance, or weakness. You may be more likely to injure yourself or break a bone.
• If you have numbness in your feet or problems with balance, you are at higher risk for falls. You might do better with a stationary reclining bicycle, for example, than a treadmill.
• Watch for swollen ankles, unexplained weight gain, or shortness of breath while at rest or with a small amount of exertion. Let your doctor know if you have any of these problems.
• To avoid irritation, don't expose skin that has had radiation to the chlorine in swimming pools.
• Do not exercise above a moderate level of exertion without talking with your doctor. Remember, moderate exertion is about as much effort as a brisk walk.
• If you still have a catheter (tube that goes into your body), avoid water and other exposures that may cause infections. Also, avoid resistance training that uses muscles in the area of the catheter to avoid dislodging it. Talk with your cancer team about what is safe for you.

 What are some tips you learned from your own experience with exercise during treatment? Was it beneficial for you? Anything you would suggest to help others be successful?

The "New Normal"

This week we're sharing a piece originally posted last year by one of Hope Cancer Resources' Oncology Social Workers, Lisa Manzini-Pace, LCSW.

The term "New Normal" has a special connotation for people undergoing treatment and/or survivors of cancer.  Without their consent, they have been inducted into an intense and often baffling treatment regimen, one that changes their daily routines, expectations, interactions with others and ability to predict how they will fare during and after prescribed treatments.  This is a daunting trajectory and one best faced in small doses.

As human beings we seek to predict, quantify and control.  These instincts, while often previously successful, can be impediments to smoothly navigating the cancer treatment labyrinth.  Oncologists, who the patient seeks to trust implicitly, are often the first to admit that treatment involves commonalities but that each individual tends to respond in a somewhat unique manner.  The truth is that none of us working with cancer treatment have a crystal ball.  That said, here are a few observations noted by this writer courtesy of cancer patient wisdom and research.

Undergoing chemotherapy and/or radiation will test one’s metal.  Chemo induces various side effects but the overwhelming one mentioned is fatigue.  And a close second is chemo brain.  The former is a bone weary fatigue and the latter is a passing state of impaired memory and clarity.  It is essential that one lower his/her triathlon or quiz show expectations during these phases.  There will be good days and not-so-good days.  Learning to be gentle with oneself is as crucial as any pill one may swallow.  It is an art to be cultivated along with a stalwart sense of humor. 

One’s entire arsenal of healthy coping is there to be used.  This may include but is not limited to eating well, exercise (physical, mental and spiritual), common sense, resourcefulness, courage, compassion (self first!), joyfulness, intelligence, mirth, humility, faith, hope and love.  These are the aspects of you—unlike cells—that cancer cannot touch.  Use them in large doses.

Priorities will change.  Things that once seemed important are relegated to the back seat of the caboose.  To quote Arthur Golden in Memoirs of a Geisha, “Adversity is a strong wind. It tears away from us all but the things that cannot be torn, so that we see ourselves as we really are.”  Most  patients say that such experiences were the awakening of new strength and understanding.

Avoid the naysayers.  Cancer, rather like pregnancy, invites unsolicited confidences from others.  Some will be little gems to be treasured while other “stories” will be about fear, pain and darkness.  You get to choose who you will listen to and who you will wish well and send on their merry way.

Simply, remember that your "new normal" may vary greatly from that of another person who has dealt with a cancer diagnosis. Find your comfort zone and surround yourself with people who are going to help you stay there. 

After Treatment: What does it mean to be a Survivor?

According to a report released by the Centers for Disease Control and Prevention and the National Cancer Institute (NCI), the number of cancer survivors in the United States increased to 11.7 million in 2007. To put that in perspective - consider the fact that there were 3 million cancer survivors in 1971 and 9.8 million in 2001. Since 1999, the rate of cancer in the U.S. has dropped .5 percent each year. The death rate of adult cancer patients has also annually dropped by about 1.5 percent since that year, according to the Annual Report to the Nation on the Status on Cancer, 1975-2008.

More good news that accompanies those numbers... Study findings indicate:

• Breast cancer survivors are the largest group of cancer survivors (22 percent), followed by prostate cancer survivors (19 percent) and colorectal cancer survivors (10 percent).
• Among all survivors, 4.7 million received their diagnosis 10 or more years earlier.

All three of those of those cancers in the first bullet point are able to be found with a cancer screening. What this information tells us is that those screenings we keep encouraging you to have are working. And not only are people surviving - they're surviving longer, which can be attributed to increasingly effective treatments. Those treatments are discovered through research trials - valuable, but under-utilized tools in the fight to rid our world of cancer.


Of course, more survivors mean an increasing need for support after the battle. Survivors often deal with long-lasting effects of their treatments that can be uncomfortable, annoying, or even physically debilitating. When a patient and their family is in the middle of their treatment, it's hard to think past what they are doing right then, so the work that comes after - staying healthy, recovering and maintaining pre-cancer activity levels, and learning to accept the limitations that they may have to live with - is often nothing they want to discuss or even consider.

Support groups and information focused on survivorship are in demand more and more by patients and their families. We work to meet that demand in the support groups we facilitate and also with our licensed Social Workers on staff. They work with individuals to determine specific emotional needs, and find sources of information and support to make sure that transitioning into the new life post-cancer treatment is as smooth as possible. If you or someone you know needs some assistance and information about being a cancer survivor please contact us at 479-361-5847.

More information about cancer survivorship can be found on these websites:

• National Coalition for Cancer Survivorship
• The Centers for Disease Control and Prevention has information, podcasts, and even the ability to send an e-card here.
• The National Cancer Institute lots of information grouped by survivorship topic here and a long list of publications and resources here. 
• American Cancer Society covers a lot of information about being healthy survivors here.

Some of the information in this posting was found in this press release on the National Cancer Institute website.

October Awareness

This week we take note of two kinds of cancer that are being recognized during the month of October. One you may already know quite a bit about, but the other may be less familiar.

Breast Cancer

The number of breast cancer survivors has risen over the last couple of decades thanks in part to the efforts of national organizations like Susan G. Komen for the Cure and the Breast Cancer Research Foundation. Under the umbrella of these organizations, thousands of small groups and local initiatives have been created with the mission of educating friends, neighbors, sisters and daughters about the need for routine exams and screenings in order to catch breast cancer in earlier and more effectively treated stages.

More people are surviving, but it's also good to know that incidences of breast cancer have been declining since 2000. This decrease (almost 7%, according to the American Cancer Society) can be attributed to reductions in the use of menopausal hormone therapy (MHT), also known as hormone replacement therapy (HRT). The Women's Health Initiative produced a report in 2002 that found that the combination of estrogen plus progestin was associated with increased risk of breast cancer and coronary heart disease. The report led to a reduction of therapies and birth control options combining both of those hormones.

At Hope Cancer Resources we approach breast cancer on many levels. We have certified health educators on staff who work in the community to spread information about early detection and screenings. Through our Save-A-Life program, we also help the under- and uninsured pay for their required mammograms. Finally, we share information about local support groups offered for women who are going through breast cancer treatment or who are survivors of the disease.

You can find breast cancer news and information at the following websites:
Susan G. Komen for the Cure
The Breast Cancer Research Foundation
Young Survival Coalition

Liver Cancer

Liver cancer is not common in the United States, with just over 26,000 new cases expected to be diagnosed this year. That is about 2% of all new cancers expected to be diagnosed. In contrast, liver cancer accounts for up to half of all cancers in many underdeveloped countries, mainly because of the prevalence of hepatitis, caused by contagious viruses, that predisposes a person to liver cancer. In the U.S., new cases have been increasing by about 3.4% in men and 3% in women each year since 1992. Incidence rates are highest among Asian Americans/Pacific Islanders and Hispanics.


The liver can be affected by primary liver cancer, which begins in the liver, or by cancer which begins in other parts of the body and then spreads to the liver through the bloodstream. Most liver cancer is secondary or metastatic, meaning it started elsewhere in the body.

Symptoms for liver cancer include:

• Losing weight without trying
• Loss of appetite
• Upper abdominal pain
• Nausea and vomiting
• General weakness and fatigue
• An enlarged liver
• Abdominal swelling
• Yellow discoloration of your skin and the whites of your eyes (jaundice)
• White, chalky stools

More information on liver cancer can be found at the following websites:
Mayo Clinic
National Cancer Institute

From the Trenches

It's all well and good for us to provide you with advice about things like cancer prevention, stress management, and caring for a loved one who's been diagnosed with cancer. Based on our experience with patients in the clinic and the information we gather from other sources, we feel comfortable acting as a kind of authority on these subjects. But sometimes the best advice comes from the people who have actually been through this fight - survivors.

CureToday.com recently asked this question on Facebook...

"If you could go back and give yourself one piece of advice on the day you were diagnosed with cancer, what would it be?"

Some of the responses were very poignant and moving, others more practical. Some, like the ones that encourage lots of research vs. the ones that discourage looking at statistics, are even contradictory. We've chosen some to share and would love to know...what would your advice be?

"research, research, research"

"Try to remain as positive as possible."

"Don't make any decisions in haste. Take the time to process the choices and the outcomes."

"let people help"

"Costume wigs are cheaper and more fun."

"Take better notes. Never go to an appointment alone... Let people help you."

"Get the prescriptions for anti-nausea meds and take them before you need them."

"Remember to breathe."

"Tell people your situation."

"Take a family member/friend with you so you don't have to hear the news alone."

"Believe that God will get me through this ... Always get a second treatment opinion... Don't read statistics!"

"Stay calm, it's NOT a death sentence! :)"

"To remember that, in some ways, the diagnosis is a gift, even if it doesn't feel like one: I know how precious life is."

"Keep a journal. Jot down all subsequent doctor's visits, tests, etc."

"Educate yourself, ask questions, have your voice heard."

"Be comfortable with your choice of oncologist. If the doctor doesn't feel like a fit for you, find someone else BEFORE you start any chemotherapy and/or radiation."

"Don't let panic set in."

"Don't worry about things you cannot change. Be happy for each day no matter how mundane it may be."

"My husband would give himself the same piece of advice he has lived with since being diagnosed with brain cancer five years ago. Never let it win!!"

"Don't believe anyone who says a needle biopsy of any kind is just 'a little prick.'"

"Become selfish! No second chance." 

"When will things be back to NORMAL?"

Many cancer patients and their families find themselves asking this question. Sometimes it's one of the first questions asked by new patients of doctors, counselors, and friends who have experienced their own cancer journey. Many times the question is asked over and over throughout the battle, and the available answers are few or unsatisfactory.

The problem with looking for a "normal" life after cancer treatment is that each individual's experience can be vastly different from another individual's experience, even when those individuals received the same diagnosis. Differences in socioeconomic issues, support (or lack thereof) from family and friends, location of treatment facilities and whether or not one decides to enter a research trial... all of these things, and many more, can contribute to the length of time it takes for patients to get back to a "normal" way of life after battling cancer and what that life eventually looks like.

Cognitive
One of the most-discussed long-term effects of cancer treatment involves cognitive functioning. Commonly known as "Chemo Brain", these effects are frustrating enough to make them one of the first things survivors bring up to counselors who are working with them to smooth transition from patient to survivor. Some common complaints patients share include:

• Forgetting things that they usually have no trouble recalling;
• Trouble concentrating, inability to focus, or being easily distracted;
• Trouble remembering details like names, dates, and sometimes larger events;
• Trouble multi-tasking, like answering the phone while cooking, without losing track of one task;
• Taking longer to finish things due to slower thinking & processing or disorganized thoughts;
• Trouble remembering common words.

There has traditionally been no real help for these cognitive challenges, and in fact, there's not really any clear evidence that they're caused by chemotherapy. Some people who suffer from memory problems after cancer treatment still score well on cognitive testing, and many of the things mentioned by patients are not even noticed by most of their friends and family. Many doctors will only "diagnose" Chemo Brain if the symptoms don't go away over time, but the reality is that many patients do find a certain amount of memory loss and difficulty completing tasks or learning new skills to be part of life after cancer treatment.

Physical
Fatigue is another issue that many patients think will only be a short-term problem as they are undergoing their treatments. In reality, the speed at which our bodies recover from the onslaught of medications, surgeries and radiation treatments it has been put through over the course of several months also varies greatly from individual to individual. The one constant that most patients agree on is that the recovery doesn't happen fast enough! It's important for patients (and their loved ones) to recognize that support may be needed for many months after treatments end, and that it's okay to take it easy for as long as necessary. If there has been a need to take time off work, going back on a full-time schedule might need to be delayed or done a little at a time. A healthy diet and exercise routine will continue to be important, as well as getting plenty of rest. (i.e. don't do away with those naps just yet!)

For some survivors, there are also physical scars from surgery and radiation and/or long-term physical impairments and alterations made to their bodies. A former cancer patient may have to become comfortable with a new appearance or learn new ways of performing common daily functions the rest of us take for granted. These kinds of changes can be challenging at best, and their emotional toll can be heavier than the physical scars themselves.

Emotional
1 in 4 people will be diagnosed with cancer in 2011 according to American Cancer Society estimates. That means it's highly likely that you or someone you know will hear the words, "You have cancer." this year. Nothing can prepare a person to receive a diagnosis that can be potentially fatal. And even when a patient has successfully made it through treatment and is declared "cancer free" there is still a tremendous amount of residual worry and frustration to deal with.

The fear of recurrence is also a very real emotional burden for every cancer survivor. Some cancer diagnoses, like bladder and some brain cancers, carry a high probability of recurrence. Others require regular follow-up for many years after treatment ends. Every single time that patient goes in for a follow-up, there is a worry that doctors could find something that will cause the patient to require another round of treatments. Even common aches and pains that have nothing to do with cancer can bring on fearful speculation and worry.

So, how can a patient find their way to their own "new normal"? 
It's important from the very start to have a strong support network. Friends, family, church groups, or even followers of a blog or Facebook page can be a tremendous source of strength, advice, and "good vibes" during cancer treatment and beyond. Support groups are a great place to start building some of these helpful relationships if a patient doesn't already have them in place. If you're in Northwest Arkansas, our social workers are tremendous resources. We also provide a list a local support groups on our website. National organizations such as StupidCancer.com and LiveStrong.org have navigation and support services available if you're unable to find a group close to you.

As a patient becomes a survivor, the support doesn't have to end. Many groups are populated by survivors who are willing to provide the encouragement and advice a newly diagnosed patient needs. A person living with regular follow-up appointments can find a great deal of comfort in that kind of group as well, as they continue to deal with the "new normal". Perhaps one of the most important things a cancer survivor can do is give them selves time to redefine themselves. Time may not really heal all wounds, as the old adage says, but it does provide a good lens with which to examine what life should look like in the wake of cancer treatment.

Cancer Survivorship

As we keep an eye on the information being disseminated on the web and in the news about cancer and its associated topics, a thread we see often implies that not enough money is being spent to "cure cancer". There are so many fundraising runs, bike rides, walks, vigils, restaurant promotions, etc... but people are still dying. When you are watching your loved ones battle cancer, it's hard to understand the progress that has been made. But there has been progress.

According to a report released by the Centers for Disease Control and Prevention and the National Cancer Institute (NCI), the number of cancer survivors in the United States increased to 11.7 million in 2007. To put that in perspective - consider the fact that there were 3 million cancer survivors in 1971 and 9.8 million in 2001. Great news! Regardless of whether or not a cure has been found, the numbers tell us that the treatments that are being tested in clinical trials around the world are finding drugs and therapies that are saving lives.

More good news that accompanies those numbers... Study findings indicate:

• Breast cancer survivors are the largest group of cancer survivors (22 percent), followed by prostate cancer survivors (19 percent) and colorectal cancer survivors (10 percent).
• Among all survivors, 4.7 million received their diagnosis 10 or more years earlier.

What this information tells us is that those screenings we keep encouraging you to have are working. And not only are people surviving - they're surviving longer. We've said it all along - but that's the proof in black and white. Screenings save lives.

Of course, more survivors mean an increasing need for support for after the battle. Survivors often deal with long-lasting effects of their treatments that can be uncomfortable, annoying, or down-right debilitating. When a patient and their family is in the middle of their treatment, it's hard to think past what they are doing right then, so the work that comes after - staying healthy, recovering and maintaining pre-cancer activity levels, and learning to accept the limitations that they may have to live with - is often nothing they want to discuss or even consider.

Support groups and information focused on survivorship are in demand more and more by patients and their families. We work to meet that demand in the support groups we facilitate and also with our licensed Social Workers on staff. They work with individuals to determine specific emotional needs, and find sources of information and support to make sure that transitioning into the new life post-cancer treatment is as smooth as possible. If you or someone you know needs some assistance and information about being a cancer survivor please contact us at 479-361-5847.

More information about cancer survivorship can be found on these websites:
Support groups in Northwest Arkansas can be found on our website here.
National Coalition for Cancer Survivorship
The Centers for Disease Control and Prevention has information, podcasts, and even the ability to send an e-card here.
The National Cancer Institute lots of information grouped by survivorship topic here and a long list of publications and resources here.

Some of the information in this posting was found in this press release on the National Cancer Institute website.