New 2019 Cancer Survey

New 2019 Cancer Survey

First Survivor Views Survey Highlights Barriers to Addressing Side Effects of Cancer Treatment

Washington, D.C. – Barriers to accessing appropriate therapies to address the physical and psychological side effects of cancer treatment continue to persist for patients and survivors, according to survey results from the American Cancer Society Cancer Action Network (ACS CAN).

Survivor Views, an initiative launched by ACS CAN in January, established a national cohort of cancer patients and survivors to complete a series of six individual surveys focusing on a range of public policy issues important to the cancer patient and survivor community. The results of the first survey, which are being released today, focus on patient experiences treating the symptoms and side effects of their cancer and access to supportive or palliative care services.

The survey found patients and survivors experience a wide range of symptoms and side effects as a result of their cancer care. While effective treatments exist for several of these physical and psychological side effects, the survey results indicate many patients and survivors are not accessing them for a variety of reasons.  Fifty-five percent of respondents reported physical limitations or difficulties completing tasks as a result of their cancer care, but only 26 percent reported being referred to physical, occupational or speech therapy by their health care provider. Similarly, 51% of patients reported anxiety or depression as a result of their cancer while only 10% reported being referred to a mental health provider for additional therapy.

Many survivors also reported adverse symptoms or pain well after their active treatment concluded. Of survey respondents who reported pain or other symptoms during treatment, two-thirds noted the symptoms resulting from their cancer or treatment continued well after active treatment concluded.

“Too many cancer patients and survivors are not receiving the appropriate treatments and therapies that would alleviate the side effects of their cancer care,” said Lisa Lacasse, ACS CAN president. “At a time when our health care system is facing incredible pressure to evolve, it’s clear that our approach to health care must become more holistic and provide patients with better coordinated options to alleviate the physical and psychological side effects of a cancer diagnosis. This coordinated, patient-centered care must continue well into survivorship as patients continue to live with the lasting side effects of their cancer and its treatment.”

Barriers to accessing prescription drug treatments to alleviate pain that often accompanies cancer treatment were also apparent in the survey results. Over half of cancer patients or survivors participating in the survey who have been prescribed opioids in the last 12 months voiced concern about their future ability to access appropriate pain medications. More than 40 percent of these respondents had already experienced barriers to accessing pain treatment.  Respondents reported these barriers had direct adverse impacts on their lives, including inability to work or participate in family or social events, setbacks in their ongoing cancer treatment, and the need for additional emergency care to treat uncontrolled pain.

Survivor Views is providing ACS CAN with timely, firsthand information that will drive our advocacy efforts forward, giving cancer survivors a voice in the issues directly affecting their lives,” Lacasse said. “The release of the first survey results focusing on patient experiences with treating pain and other side effects associated with a cancer diagnosis provides valuable insight into the shortcomings patients face in trying to manage their symptoms on a day-to-day basis and highlights that symptoms can extend months and years after treatment concludes.”

I found these survey results to be right on. Too many cancer survivors continue to deal with pain and side effects years after treatment. Now there’s proof! Thank you ACA for doing this enlightening survey!

Never Give Up!!!


Living with Post-Traumatic Stress Disorder (PTSD)

Living with Post-Traumatic Stress Disorder (PTSD)

I received the diagnosis of post-traumatic stress disorder (PTSD) about ten years ago, after my daughter was involved in a serious accident while walking to school. Before the accident, I worked hard to keep my life, my family and their world so protected that the instant she got hit, my controlled snow globe world instantly cracked, hit the ground, and shattered. In fact, when my son and I were talking the day of the accident, he looked at me and innocently said, “Things will never be the same again.”  Extremely prophetic words that at the time neither myself nor my family had any idea what they would come to mean.

During the year following my daughter’s accident, I was busy with tending to her health, taking her to appointments, trying to work full time, and keeping our household running as normally as possible. Simultaneously, I kept having strange experiences that were making me feel like I was losing my mind. I couldn’t stop and think about what was happening, nor did I have the words to describe it to anyone. It was just an overwhelming sense of fear, and general feeling that I was going slowly going mad.

I was becoming anxious. I started losing all sense of time; finding myself wondering where I had been the last few hours and feeling incredibly disconnected from my body and the world. I was called into meetings at work because my performance was terribly erratic. I felt physically sick all the time. And I kept having these bizarre explosive memories leaving me feeling out of control and disoriented.  I knew something was seriously wrong with me, so I made a call to a psychologist who agreed to see me the next day.

When I started working with my first therapist, I was anxious to tell her everything all at once. I thought if I could word-vomit everything that was coming to my mind, that would be enough to feel better and get back to work.

I didn’t understand that I was having flashbacks, and that I was living in a constant state of crisis. I was writing my therapist letters from a dissociated state which made no sense but felt vaguely familiar as she would read them aloud. I would lock myself in my room for hours fearing that I was going to hurt myself, and I didn’t want to be around my family. I felt out of control, thinking I was losing my mind, feeling like I had failed my myself, my family, and I began spiraling down a very slippery slope.

One of the most important practices to have in place when beginning trauma therapy is to have a safety plan. I needed to develop tools for many things, including distress tolerance. Once a plan was in place, we could begin the process of working on and processing my trauma.

Not only was my therapy about processing the memories, but I also had to start accepting that there were some intense effects of the trauma, and they influenced how I saw and reacted to the world.

I also had to face how my trauma affected my relationships with my family, friends, parenting style, and career. While dealing, and coping with the trauma, there were a lot of “aha” moments. I saw how my behavior and ways of coping with life, were a direct result of my trauma and not because I was a bad person.

Some of my PTSD symptoms still have a good choke-hold on me. As with many illnesses, PTSD can be invisible on the outside. My symptoms include (not limited too) flashbacks, concentration issues, becoming overwhelmed which leads to feeling like my brain is shutting down, difficulty making choices, anxiety/depression, and a sensitivity to triggers. I sometimes use the phrase, “triggers, triggers everywhere.” The wind can blow a certain way, or fireworks, or a car backfiring, even the moon can sometimes bring on flashbacks.

Once I was able to name and accept my symptoms, I needed to learn to work within my deficits. This wasn’t easy or comfortable for me. And honestly, there are still times I find myself becoming frustrated and angry at my PTSD. When that happens, I stop, and use my grounding tools to rest and reset.

Writing gave me the courage I needed to address the pain I was feeling. I would write even when I thought I had nothing to write about. Often, I would write and send what I wrote off to my therapist. I started to find that I could write what I couldn’t say aloud.  At first, it provided distance from having to use my voice, but then I found writing gave me a voice.

Learning to recognize and acknowledge each step on my path towards health and understanding is a long and never linear process that helps keep me in a resilient mindset. I also try to remember to notice the perfect moments. I made myself understand that are 24-hours in a day, and within those hours are some spectacular moments.

I was not going to let the effects of what happened to me keep me from trying to have the life I wanted. I never lose sight of my goals. They are to live with my past, live in the truth, and recognize and relish in the feelings of internal contentment. Some days those goals seem as far away as the furthest star, and other days I understand that, I am living in my truth, I am content and understand that I’m not just a survivor of trauma, but that I am thriving despite my trauma.

Thank you, Alexis and the Never Give Up Institute for inviting me to be a guest writer on your blog. The work you do is truly inspiring!

Alexis Rose
Author, Speaker
https://atribeuntangled.com/blog/
[email protected]

Thank you, Alexis Rose, for your enlightening blog on PTSD. I know my readers will appreciate your insights, vulnerability, and power to survive. Thanks a million for being a guest blogger on my website.