Raising awareness of prostate cancer

ewc_ewc_CSCWashington0320150141Today’s blog post is written by Marni Amsellem, PhD. Marni is a research consultant for the Cancer Support Community.

Prostate Cancer Awareness Month is in full-swing, and there is a lot to talk about. Prostate cancer is the 2nd most common type of cancer affecting men in the United States and there are more than 2 million survivors of prostate cancer across the country. Moreover, one in seven men will become diagnosed with prostate cancer in their lifetimes. Prostate health affects all men and their loved ones

Although prostate cancer is common, it is not often discussed. Many men are hesitant about screening for prostate cancer or are unsure of what they need to know related to detecting cancer and talking with their health care team about screening. Similarly, there may be issues related to the treatment of prostate cancer that can be difficult to discuss. For instance, the side effects of prostate cancer treatment may include erectile dysfunction, incontinence and other side effects that affect a man’s identity and self-esteem.

The Cancer Support Community (CSC) recognizes that these topics are often tough to acknowledge and difficult to discuss. Therefore, CSC has developed and gathered information and resources for understanding and managing changes in intimacy and sexuality, and on coping with the emotional distress that can result from prostate cancer and its treatment. If you have questions you may also reach out to CSC’s Cancer Support Helpline at 1-888-793-9355. Our Helpline is staffed by licensed call counselors who are available to speak with you to answer your questions and direct you to resources that are available.

The Cancer Support Community also continually aims to better understand the unmet needs of cancer survivors, and has developed the Cancer Experience Registry (CER) to identify and advance the understanding of the emotional and social needs of people living with cancer and their caregivers and to give them a voice. The Registry engages those who have been impacted by cancer to answer questions about their social and emotional experiences and needs throughout their cancer journey, and regularly provides summaries of the information that is learned. The new sub-Registry, Cancer Experience Registry: Prostate Cancer, is specifically for men who have or have had prostate cancer. This Registry explores the full experience of prostate cancer and is “a chance for men who have experienced prostate cancer to give back to others going through a similar experience,” said Gwen Darien, Executive Vice President of Programs and Services at CSC. “We are eager to learn more about the unique needs of this group so that we and others can create resources tailored specifically to men with prostate cancer and their loved ones.” Caregivers are also invited to participate by joining the Cancer Experience Registry: Caregivers. To learn more about the Registry or to join, visit www.cancerexperienceregistry.org.

Additional resources:

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What you need to know about ovarian cancer

two beautiful girls with a baby on the beachToday’s blog post is written by Marni Amsellem, PhD. Marni is a research consultant for the Cancer Support Community.

September is Ovarian Cancer Awareness Month, a time to recognize the impact of ovarian cancer, educate others and ourselves about this type of cancer and take action.

As anyone who has been touched by ovarian cancer knows, the diagnosis comes with significant challenges for women diagnosed as well as their loved ones. Aside from a variety of informational needs, there are many challenges that women face related to their emotional, physical and sexual health.

To better understand the informational and psychosocial needs of women diagnosed with ovarian cancer, the Cancer Support Community conducted a national online survey.

Nearly half of the women who responded were newly diagnosed. The other half of women were diagnosed one or more years earlier. The survey found that these women expressed a great deal of concern about many issues throughout their treatment, including:

  • Communicating with their health care team (41.3%)
  • Managing fear of recurrence (48.0%)
  • Staying healthy during (56.0%) and after (51.4%) treatment
  • Managing fear of death (51.4%)
  • Communicating with family members about their disease (35.7%) and genetic risk (30.4%)
  • Resources for financial aspects of cancer care (55.3%), and sexuality and relationship issues (46.8%)

In response to the findings collected from this survey, the Cancer Support Community developed a fact sheet, Frankly Speaking About Cancer: Ovarian Cancer, which addresses the informational and psychosocial challenges listed above.

In addition, many respondents reported that they would be interested in joining a support group with other ovarian cancer survivors. The need to connect with others, even after treatment, is important to women who are living with ovarian cancer. Many feel that having a community of women who have lived through similar experiences and challenges is both comforting and therapeutic. The Cancer Support Community offers in-person and online support through our Affiliate Network and online support groups.

CSC also continually aims to better understand the unmet needs of ovarian and all cancer survivors. The Cancer Experience Registry is an online, grassroots community where people share their social and emotional experiences with cancer. It is a research project driven by anyone who has ever received a cancer diagnosis and their caregivers.

Our hope is through the sharing of these experiences, we can use this information to not only create new programs and resources for people touched by cancer, but also bring forward a collective patient and caregiver voice to health care providers, policymakers and others to help improve the cancer experience.

If you have questions, you may reach out to CSC’s Cancer Support Helpline® at 1-888-793-9355. Our Helpline is staffed by licensed call counselors who are available to speak with you to answer your questions and direct you to resources that are available.


Additional resources:

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What do I tell the Kids?

fsac what do i tell the kids“Any emotion is ok. Don’t try to be perfect. Fail a little, prevail a little. Get through it best you can.”

So begins the advice of a parent and lymphoma caregiver. Coping with cancer and being a parent both are challenging tasks in their own respects. Doing both at the same time can be especially difficult, because there is no “one size fits all” way to approach telling your children that you have cancer. How each child reacts to this will depend on their age and their knowledge of cancer, but like living with cancer, there is no “one size fits all” experience.

Children are sensitive to changes in their parent’s behavior, even if they are too young to comprehend what is going on. A young child may blame themselves, thinking “I didn’t behave so mommy got sick.” They might develop separation anxiety or behavioral problems at school. It is also common to see a regression in behavior where a child may act younger than they are or they may act out themes that are illness-related during playtime.

Happy Mixed Race Ethnic Family Posing for A Portrait in the Park.In a survey conducted by the Cancer Support Community, as much as 66% of parents said they did not talk openly or share their feelings about cancer with their children. While it may seem like a good option to hide a diagnosis because you think it might upset them or that they are too young to understand, leaving children out of the diagnosis can create feelings of distress and isolation instead of avoiding them.

The Cancer Support Community recommends letting your child know these three points, regardless of their age:

Cancer is Not Your Fault

It is common for children to think cancer is their fault; however, they generally will not share this with others. By explaining that cancer is not their fault, you can help your child to feel less guilt and stress around the cancer diagnosis

Any Question Is Ok

Children may be afraid to ask questions if they have not been given permission. Let them know that any question is ok, and that you will do your best to have an answer. There may be times that you don’t know the answer, and that is okay too.

Cancer is Not Contagious

Many children think cancer is contagious and become fearful of hugging or kissing their family member. Let them know it’s ok to be close, and that they cannot catch cancer.

pictureIf chemotherapy is part of your current treatment, it is also important to have the discussion of why you are losing your hair. Cancer treatment can be very confusing to a child and they may also not understand why you are going to so many doctor appointments or why you are in and out of the hospital. This also ties into one of the hardest, but most crucial questions that you may or may not be asked but should be discussed: are you going to die? It is critical that the child knows there is a good support system behind them. One possible response could be, “People can die from cancer, but many people live. My doctors are doing everything they can to get rid of my cancer. That’s why I am at so many doctors’ appointments and have so many visits to the hospital. Right now they think that the medicine is working, but if that changes, I will let you know.” Be sure to keep that promise and let your child know if the situation does change.

Although every situation and every child is unique to each family, being honest and having open communication is the healthiest way to go about talking about cancer. Children should know its ok to talk, to ask questions, to cry and to help when they can. The more they are assured they are not alone in their feelings, the better off everyone will be.

For more tips on talking to your children about cancer order or download our free publication, Frankly Speaking About Cancer: What Do I Tell the Kids.



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Help us shine the light on MPNs!

Shining the light on MPNs 2015Every fall we hear a lot about raising awareness for different cancer types—from childhood and gynecological cancer in September, breast cancer in October to lung cancer in November (just to name a few of the awareness months that take place this season). But there is one other awareness day this fall you may not have heard of. It’s MPN Awareness Day for people impacted by myeloproliferative neoplasms, and it’s taking place tomorrow on 9/10/2015.

MPNs are a rare group of blood cancers originating in the bone marrow that are diagnosed in about 14,500 people each year in the United States.  Raising awareness of a rare diagnosis like an MPN is important not just on MPN Awareness Day, but every day.

What exactly is an MPN?

An MPN causes the bone marrow to create 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.

Why is awareness so important?

  • 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 can you do if you’re living with an MPN?

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 writing.
  • Take care of yourself by eating well, getting plenty of sleep and exercising regularly.

How can we raise awareness of MPNs?

  • Download our toolkit to learn more about MPNs and how to host an MPN Awareness event near you.
  • Join us on social media with the hashtag #MPNAware2015 to stand with people impacted by MPNs and to share your experience on our Facebook and by Tweeting to @CancerSupportcm.
  • Join your local CSC for their 2015 awareness events throughout the month of September. For a list of CSC Affiliate events click here.
  • Learn more about MPNs by downloading our free fact sheet.

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 #MPNAware2015.

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Patients, raise your voices!

This week’s blog post is by Kim Thiboldeaux, CEO of the Cancer Support Community. This blog post also appears this month in the Huffington Post, and you can read more of Kim’s Huffington Post blog posts here.

huff post tedx articleNot too long ago, I had to make an appointment for a family member with a specialist at a large academic medical center in New York City. The referral was made by a community doctor as a result of certain concerns raised by the doctor about the results of various tests and scans. After a week of leaving messages and talking to four different people at this medical center, I was told that the earliest the doctor could see us would be in October. October! And here we are in August!

These types of scenarios make it hard to believe that anyone in the medical community is thinking about the patient and the emotional and psychological implications of waiting more than two months to see a doctor when concerns have been raised about a patient’s medical condition. It is hard to believe that things were ever different, and yet they were.

Recently, I was invited to give a TEDx Talk with UC Davis in San Francisco on the subject of Redefining Normal and I took a look at health care — where we were, where we are and where we’re going. Remember when we had family physicians? A doctor would come into our homes to treat us and our entire family. Doctors knew us — our circumstances, our family, our financial pressures and medical history and our overall lifestyles. Things began to change radically with the institutionalization of health care that occurred over the past several decades.

The emergence of Medicare, Medicaid, labor unions, private insurance companies, etc. resulted in care being based on formulas — not individuals. Likewise, the significant medical and scientific advances in screening, testing and treatments have no doubt saved countless lives but further distanced patients from their doctors and health care team. We know much more about a patient today than at any time in our past but have forgotten that sometimes what matters most is actually what the patient has to say.

Today, we are living in a time of change. There are a growing number of examples of the health care system bending towards the needs and wants of the patient. Walk-in clinics are a good example — fast, easy, open early, late and on the weekends. On a policy level, The Affordable Care Act has mandated the formation of the Patient-Centered Outcomes Research Institute (PCORI), examining different models of patient-centered care and how they can improve quality and decrease cost. And we are witnessing a proliferation of health-related apps allowing consumers to track their own health, wellness and medical information. There is an all-around push across health care for a new model of “patient centered care” where the individual voice matters again.

And yet, as the system is evolving towards true patient-centered care, and patients are becoming more and more involved in decision-making, few patients are actually prepared for this new model.

At the Cancer Support Community (“CSC”), we have a program called Open to Options. Through this free program, a patient can talk to a trained Decision Counselor when they are confronted with any medical decision — whether to choose Treatment A versus Treatment B, a mastectomy versus a lumpectomy, or perhaps whether to enter a clinical trial. The Decision Counselors help the patient raise his/her voice by developing a question list and insert his or her own preferences and values into the equation.

Usually, the doctor is looking at medical data, outcomes, and efficacy and recommending treatments that will lead to the best survival for the patient. But patients tell us that life is about so much more than “surviving” — it is about living! Patients want to know, “How will this impact my quality of life — my mobility, my independence, my ability to enjoy friends and family?” “What will the cost of this treatment course be for me and my family versus other treatments?” “Will I get a placebo in a cancer clinical trial?”

Yet for all the progress I have seen on the individual patient front, questions continue to linger. “How do we better integrate these types of interventions that really matter for patients into mainstream medical care?” “How do we make sure integrated care — including counseling, decision-making, patient education, comprehensive care planning — is mandated, integrated and paid for?” These are things we know matter to patients. How do we ensure that the patient voice is raised — and heard? We tackled the institutional deaf ear by creating an outlet for the collective Patient Voice, our Cancer Experience Registry in which nearly 10,000 patients with cancer and cancer survivors have shared information about their experience and needs throughout the cancer journey.

The data has been valuable in identifying gaps in care as well as leading to new programs and services to address those gaps. It has revealed that while there are some consistent themes across the various diagnoses, people with different kinds of cancer have issues that are more specific, or even unique to their individual diseases. For example, a growing number of patients are experiencing their cancers as a chronic condition over the course of years. This trend means that people impacted by cancer have to manage both short- and long-term side effects and related costs over a long period of time. For some, their treatment will never end, and this has many layers of implications which need to be addressed.

While we all agree that as a society we need to do a better job of controlling health care costs, we also have to recognize that we need the flexibility to create an individual plan for a patient based on co-morbidities, genetic predispositions, and other individual biological and psychological factors. There continues to be the need for a much-improved model of patient-centered care where the patient is consulted, respected and regarded as key to the decision-making process.

We are staring down the road at 77 million boomers who will be experiencing a wide range of medical conditions and serious and chronic illness. We are also staring down the road at a predicted shortage of health care workers during a time of growing need and demand. An educated and empowered patient who is involved in the process and trained to be his or her own best advocate has the potential to be one of the most powerful tools in the health care toolbox. Welcoming patients into the conversation could be — I dare say — revolutionary as we face these uncertain years ahead.

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