A hidden battle in the cancer journey

bigstock-Hope-For-Future-3649887A recent study published in Lancet found that three-quarters of cancer patients who are clinically depressed do not receive the therapy they need, creating a “huge unmet need.” The study argued that although depression is widely overlooked, treatment would cost a fraction of cancer drugs.

The study points out that although feelings of sadness can be common with a cancer diagnosis or any other major health issue, depression is much more than just temporary sadness. Individuals with depression may feel persistently low, find it difficult to sleep and have poor appetites.

The research focused on 21,000 individuals living with cancer in Scotland. It found that 6 to 13 percent of these individuals were clinically depressed, significantly higher than the two percent in the general population. Additionally, 75 percent of the individuals with depression did not receive adequate treatment. Many did not consider seeking treatment themselves. Further, the medical professionals they routinely visited did not pick up on or diagnose their depression.

The Cancer Support Community’s Research and Training Institute has also done research on the topic. In CSC’s Cancer Experience Registry, a survey of metastatic breast cancer patients found that, among patients that were seen at a community cancer center or private oncology practice, 50 percent of them were never asked about distress. Even when seen at a comprehensive cancer center, 35% of patients were not asked about distress. When looking at those patients who were asked about distress, regardless of the care facility, 20 percent never received referrals for managing it.

As a result of the Lancet study, the researchers recommended a new, nurse-led approach to treating depression. This approach combined anti-depressant drugs, problem-solving therapy and encouragement towards physical activity. In their study of 500 patients, this approach led to over 60 percent of participants reporting their depression scores as half of the previous score. Participants also said that they felt less anxiety, fatigue, and pain. Researchers argued that similar programs could vastly improve the quality of life of many individuals diagnosed with cancer.

This study contributes greatly to CSC’s mission of providing emotional and social support to individuals with cancer. If you or someone you know is facing a cancer diagnosis, you’re not alone. Call the Cancer Support Helpline at 1-888-793-9355 Mon-Fri 9 am- 8 pm ET or explore our online support group, The Living Room.

If you have ever had any type of cancer, we also welcome you to participate in our Cancer Experience Registry, an ongoing research project that is helping us learn more about the full impact of cancer.

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The Power of Your Words

This week’s guest blogger is Susan Meyn, LPC, a support group facilitator for the Cancer Support Community’s online support groups. For more information on receiving online cancer support, click here

Susan Meyn, LPC Facilitator, Online Community at CSC

Susan Meyn, LPC
Facilitator, Online Community at CSC

“Simple”; “available”; “inexpensive”; “helpful”—these descriptors tell us a lot about why expressive writing has gained so much attention in recent years. It’s comforting for someone facing a difficult medical diagnosis to have tools available to help modulate the wide variety of emotions that come with it. One of the tools that can help is writing—specifically “expressive writing”. Research over the last 30 years supports the health benefits of writing about emotions. Of course, people have actually been writing about their personal experiences for thousands of years. Maybe they all knew something that our researchers now know with more certainty.

A little historical perspective: Journals and diaries have recorded personal life experiences for centuries. But, using writing as a therapeutic tool has a shorter life span—roughly over the last half century. Ira Profoff, PhD created the “Intensive Journal” in the 1960s. His method is aimed at personal development, and provides a way to deepen your relationship with yourself. His workshops continue to this day.

Another psychologist and researcher, James Pennebaker, made a surprising discovery in the 1980’s when he researched the benefits of talking about difficult life situations and how this made a difference in a person’s wellbeing. In his experiment he asked the participants to write for 15 minutes a day for 4 days in a row. The participants were broken into two groups—one group writing about a traumatic event, and the other group writing about something superficial. Regarding that first experiment, Pennebacker said, “To my surprise, those who wrote about their traumas needed less medical attention in the following months than they had previously, and many said the writing changed their lives. Ever since then I’ve been devoted to understanding the mysteries of emotional writing.” (from Preface of “Writing to Heal). His book, Opening Up details much of his early research, and another book, Writing to Heal provides step-by-step guidelines on how to do this kind of writing.

Pennebaker uses the terms “expressive writing” and “emotional writing” interchangeably. The emphasis is on using writing to express the emotions that go on when encountering difficult life events at a deeper level than ordinary discourse. It’s important to write for yourself, and possibly not even share what you wrote with others.

Now, more than 30 years after that initial study, there is continued interest in how writing can be used to heal. The Writing Cure is a book devoted to illuminating a wide range of studies on expressive writing. In cancer related studies, some have found that participants who practiced expressive writing had fewer physical symptoms and medical appointments at a three-month follow-up. Some studies show improved sleep after participating in the writing exercises. The studies continue.

Want to try your hand at expressive writing? Check out these simple guidelines to by clicking here.

The Cancer Support Community offers support groups that meet online in a chat room. While not the same as journal writing, it’s still an opportunity for participants to express their feelings as they talk to other cancer patients or caregivers in their groups. Our groups are professionally facilitated, helping to encourage participants to look deeper into their own feelings as they talk to others facing similar challenges. These groups, too, provide another kind of “expressive writing”.

I hope you’ll consider using this simple, available, inexpensive, and helpful tool for yourself.

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Shining the Light on MPNs

Members of CSC Atlanta shining the light on MPNs at their MPN awareness event

Members of CSC Atlanta shining the light on MPNs at their MPN awareness event

This month marks the recognition of ovarian cancer, prostate cancer, childhood cancer, leukemia, lymphoma and thyroid cancer. But, did you also know that tomorrow is day of awareness and recognition for a rarer group of cancers?

Each year, about 14,500 people are diagnosed with myeloproliferative neoplasms (MPNs), a group of rare blood cancers originating in bone marrow. Tomorrow, September 11, 2014 is recognized as MPN Awareness Day. Living with a rare cancer like an MPN comes with a unique set of challenges that make raising awareness, tomorrow and every day, crucial—so that no one faces cancer alone.

What exactly is an MPN?

An MPN is a disease in which the bone marrow creates too many red blood cells, platelets or certain white blood cells, which can cause complications such as anemia, infection or fatigue as the extra cells build up in the blood and/or bone marrow.  Types of MPNs include polycythemia vera, essential thrombocythemia and primary myelofibrosis.

Challenges of living with an MPN

  • Getting an accurate diagnosis can sometimes be difficult.
  • Unlike the other types of cancers being recognized this month, few people have heard of MPNs, causing those living with this diagnosis to feel isolated
  • People living with an MPN don’t always look sick
  • Treatment for MPNs is often just to “watch and wait” or is symptom management only.

What you can do

If you are impacted by an MPN, there are several things you can do to feel empowered and live well with your diagnosis.

  • Build a support network of friends and family you can count on.
  • Communicate your emotional and physical concerns to your health care team so they can help you find support.
  • Try to stay relaxed through stress-reducing activities such as yoga, meditation, light exercise or journaling.
  • Take care of yourself by eating well, and getting plenty of sleep and exercise.

Want to learn more about this rare group of cancers and how you can help raise awareness of the challenges of living with this diagnosis? Check out this week’s episode of Frankly Speaking About Cancer, and download this fact sheet on understanding MPNs. If you or a loved one is impacted by an MPN, you’re not alone.

Take part in our MPN Awareness activities on social media during the entire month of September by following #MPNAware2014.

Posted in Cancer Advocacy | 2 Comments

Is it in the Family? The Link Between Cancer & Genetics

Do you know about the link between cancer and genetics? Perhaps you have heard the term “BRCA genes” on the news or read it in health magazines. Perhaps you have heard of women electing to have mastectomies in order to minimize their predisposition to cancer. But what exactly is the link between cancer and genetics?


The answer begins with first understanding what genes themselves are. Genes exist in every cell in your body and serve to tell your body which proteins to make depending on the cell type and its needs. Some genes tell your body how to fix certain damages to your body, such as those due to aging, dietary factors, hormones, etc.

Sometimes genes themselves become damaged, or form mutations. When these mutations occur in the cells that are supposed to fix damages to the body, they can grow without control and cause cancer. For most people diagnosed with cancer, it is the result of a mutation that has developed over time. However, for some, this mutation is inherited from one of their biological parents, making it a hereditary cancer.

Hereditary cancers are estimated to only account for about 10% of all cancers. However, cancer is a fairly common disease, so it is possible for multiple members of a family to be diagnosed with cancer without there being a genetic link.

Hereditary cancer syndrome refers to an inherited gene mutation that increases an individual’s risk for cancer. Two of the major genes causing hereditary breast and ovarian cancer syndrome are BRCA1 and BRCA2. Other cancer syndromes include Lynch Syndrome, Hereditary Non-Polyposis Colorectal Cancer, Cowden syndrome, Peutz-Jegher syndrome, and Li-Fraumeni syndrome. The discovery of these genes has led to a new population of cancer “pre-vivors,” or individuals who are taking active measures to help control or reduce their risk of cancer. The three main methods of doing so are:

  • Chemoprevention: the use of medication to lower the risk of cancer
  • Surveillance: the use of screening tools in order to monitor any changes and catch cancer in its earliest possible stage
  • Prophylactic surgery: surgical removal or tissue or organs susceptible to cancer (such as mastectomy or hysterectomy)

Through this increased knowledge about genetic predisposition to cancer, individuals have been able to make empowered decisions for their own treatments. What is right for one person may not be right for someone else, depending on the person’s risk and his or her personal values.

For information on this topic, listen to CSC’s newest radio show Living with a High Risk of Cancer and download Frankly Speaking About Cancer: Lynch Syndrome and Frankly Speaking About Cancer: BRCA1/BRCA2 Mutations. For help navigating treatment options, check out Open to Options

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3 tips for traveling with cancer

Middle-Aged Woman with an Inflatable RaftIf you’re living with cancer or are a caregiver to a loved one with cancer, a weekend getaway this Labor Day may not only seem frivolous, but also completely impossible! However, taking a small time out from this scary and complicated time may be exactly what the doctor ordered.

Taking a vacation doesn’t have to mean traveling a long-distance or doing any stressful or high-impact activities—the key is to relax and enjoy time away from your everyday life. If now is not the right time for you to get away, you can still plan a “staycation” and relax right where you are. Here are our top three tips for planning a safe and healthy vacation or “staycation” this Labor Day.

1. Talk to your Doctor. 

Before you head anywhere this weekend talk to your health care team to determine if now is the right time to travel away from home, if there are any special considerations you should take (such as avoiding air travel or sun exposure) and if there are any conflicts with current treatments and appointments.

2. Don’t forget medications.

Wherever you decide to go, you should pack enough medications for the length of your trip, plus a few extras in case you have unexpected delays or accidentally lose a pill. Keep a list of all emergency contacts, medications and allergies with you in case you need medical attention while you’re away from home. If you are traveling with multiple bags, you may want to make sure all your medications are in the bag most accessible to you (like your carry-on if you’re flying).

3. Plan your activities carefully.

Your vacations may not be what they once were pre-diagnosis, but that doesn’t mean they can’t still be fun for everyone. If you get tired frequently, you may want to structure your itinerary with built-in rests periodically so you don’t wear yourself out before the trip is over. If you’re unable to leave town, you can still enjoy your long weekend. Find some places near home that you haven’t been able to visit since your diagnosis. Wherever you go, remember to choose activities that won’t cause stress or anxiety—this vacation is about YOU!

For more tips on enjoying your long weekend, try out some of our relaxation techniques and stress management tips.

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