Taking charge of scars: The emerging art of mastectomy tattoos

pink ribbonAfter being diagnosed with breast cancer, millions of women are faced with the tough decision of undergoing a mastectomy or lumpectomy, in addition to other forms of treatment like chemotherapy or radiation therapy. Following these surgeries, which leave women with scars or no breasts at all, there is the option of having reconstructive surgery or leaving the scars as they are. Non-profits like P.Ink want to give women another option—tattoos.

While tattooing over surgical scars is not a practice unique to P.Ink and can be requested at any tattoo parlor, P.Ink is one of the only nonprofits in the country that provides women with creative and self-expressive ways to transform their scars.

Located in Boulder, Colorado, P.Ink’s goal is “to connect breast cancer survivors with tattoo artists who can provide a form of healing that no one else can” and to let survivors know that “cancer doesn’t have to leave the last mark.” The initiative was started by Noel Franus, inspired by his sister-in-law Molly Ortwein who wanted another option besides reconstructive surgery. In 2013, P.Ink raised enough money for “P.Ink Day” which gave 10 breast cancer survivors with tattoos, providing them with an empowering experience of reclaiming their bodies. Since then, “P.Ink Day” has become an annual event, and will be coming to 13 North American cities this year on the weekend of October 10th.

Anyone who has gone through breast cancer or knows someone who has gone through it is well aware of the impact emotional well-being has on both the battle and healing process. Each woman copes and heals in a different way and the more options there are the better. For some women, tattoos are not just marks of beauty and individuality but a powerful symbol of resilience and triumph.

Want to hear more stories or share yours? In honor of Breast Cancer Awareness month, the Cancer Support Community invites you to make your voice heard by becoming a member of our Cancer Experience Registry: Breast Cancer or Cancer Experience Registry: Metastatic Breast Cancer at https://www.cancerexperienceregistry.org/.

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Help us understand the full impact of blood cancer

Nancy, Member of CSC Greater Philadelphia and living with multiple myeloma

Nancy, Member of CSC Greater Philadelphia and living with multiple myeloma

Approximately every 3 minutes, someone in the United States is diagnosed with a type of blood cancer.  About 9.4 percent of new cancer cases in the U.S. in 2014 were expected to be a type of blood cancer.  And, there are currently an estimated 1,185,053 people in the U.S. are living with or in remission from a type of blood cancer.

There are three types of blood cancers that are most common:

  • Leukemia—cancer that is found in the blood or bone marrow
  • Lymphoma—cancer of the lymphatic system
  • Myeloma—cancer found in plasma cells

Each of these 3 types of blood cancers are more or less common among different demographics of people. For example, leukemia, non-Hodgkin’s lymphoma and Hodgkin’s lymphoma are among the most common types of cancer in children and adolescents under the age of 20, while myeloma is rarely diagnosed in anyone under the age of 45.

Because of the widespread impact of blood cancer diagnoses, it’s important to raise awareness, not just during Blood Cancer Awareness Month every September, but all year long. Part of raising awareness of this group of cancers means learning more about the full experience of living with this diagnosis—from physical symptoms to the social, emotional and financial impact. To achieve this, we’re inviting everyone who has ever been touched by a blood cancer diagnosis to become a member of our Cancer Experience Registry to share their unique experience to help us better understand the unique needs of this community. Anyone with any type of blood cancer is invited to join our general Cancer Experience Registry, but there are also several sub-registries aimed at collecting the experiences of people with specific diagnoses.

One of these sub-registries is the Cancer Experience Registry: Chronic Myeloid Leukemia (CML). CML is a type of cancer that starts in certain blood-forming cells (myeloid cells) of the bone marrow. This diagnosis is referred to as chronic because it tends to progress more slowly than other forms of leukemia. CML is most common in older adults, but can occur at any age. If you have ever been diagnosed with CML, help us learn more about how the CML experience by sharing your own journey with us here.

The other sub-registry is for people impacted by chronic lymphocytic leukemia (CLL). CLL is another type of chronic leukemia that also forms in certain white blood cells (lymphocytes) in the blood marrow. Most people with CLL do not show any symptoms for at least a year, and this diagnosis is also most prevalent in older adults. To help us learn more about the impact of CLL, become a member of the Cancer Experience Registry: CLL here.

Are you or a loved one impacted by blood cancer? What do you want others to know about your diagnosis, and what do you do to raise awareness? Weigh in on our Facebook page here with the hashtag #BloodCancerAwarenessMonth.

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When your Child gets Cancer: A Parent’s Perspective

September is Childhood Cancer Awareness Month. For parents with children who have cancer, this is a time to advocate for their children. Each year approximately 15,700 children are diagnosed with cancer. Despite these statistics, childhood cancers do not receive as much funding as adult cancers and the causes of childhood cancer are still unknown.

With the help of two parents and bloggers, Lara and Ken, whose children faced cancer, here is what you need to know about childhood cancer:

The Diagnosis can be Devastating:
No one ever wants to hear the words “You have cancer.” To hear that your child has cancer is an even worse thing to hear. For childhood cancers especially, they can be difficult to treat. Ken and his wife were told that their son’s cancer was untreatable.

Nick-Cancer Sucks - August 2006“My son, Nick Lynch (Nickie New Year – Born 1/1/98) was diagnosed with Stage IV Neuroblastoma in May of 2006.  We were told it was fatal and that he would not see his 9th birthday. We were also told that it was our worst nightmare because the tumor was inoperable and the situation was likely untreatable.  I will never forget that awful day when we were given this news.”

A diagnosis can be as complicated as Nick’s while in other cases, rates of survival can be as high as 90%. There are 16 different types of childhood cancers and over 100 subtypes. Like adults, the diagnoses also vary from child to child.

How to Help Parents:
HansAfter receiving news like this parents often become strong advocates for their children. News like this can also make parents as well as children feel isolated sometimes. Both the children and their parents need support and friends during this time. One way to help is to simply be there. As Lara explains, “When your child is in treatment for a pediatric cancer, your life becomes unpredictable and out of control.  Symptoms like pain and fever can have you racing off to the clinic or ER at all hours of the day and night. Your single priority becomes the basic care and survival of your child.  And as a parent in charge of his/her care you have to use every tool in your personal tool kit to ensure your child’s best possible outcome.  You will be hyper-vigilante and on call 24 hours a day 7 days a week. The only way to get through it is with a lot of help and support. It can be the most humbling part of being human to ask someone for something that you think should be obvious. But you have to be sure to ask your friends and family for what you need.”

Other ways to help parents include:

  • Making a meal for the family
  • Offering playdates if you have children around the same age (be sure to get the doctor’s permission in order to make sure it is safe).
  • Going out for coffee or lunch
  • Listening if the parent or child wants to talk

Why Raising Awareness is Important
Many people do not even know that September is Childhood Cancer Awareness Month. Unless childhood cancer affects your family, it may not be something you would be aware of. Awareness can help families facing childhood cancer feel less alone. It also gives them more opportunities for their voices to be heard. Every person’s experience with cancer is important and should be heard. If you have experienced cancer or have been a caregiver, join the Cancer Experience Registry. Sharing your story can inspire and be a resource to others who are newly diagnosed.

To learn about how to talk to your children about cancer, check out the Cancer Support Community’s guide here.

Be sure to look at both Lara’s blog, Hans Journey and Ken’s blog, Nick Lynch

To learn more about childhood cancers check out these websites:

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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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