Combating end-of-treatment stress

Editor's Note: We will continue with Part 3 of the clinical trial series tomorrow.

Greetings from Austin, Texas - - Home of the Longhorns! I hope someone is knitting some horn mittens for the Lone Star cows: It is “19 degrees but feels like 10.” Given the horrific weather and travel hazards in most parts of the country, I am grateful to have arrived safely. The chill was only fleeting, for I am surrounded by hundreds of colleagues from across the United States who share my passion for cancer survivorship advocacy. (I am also hoping some authentic Tex-Mex chow will be warming.)

Austin is home to the LIVESTRONG, Lance Armstrong Foundation headquarters and I am here for a conference on the “Cancer Transitions™: Moving Beyond Treatment” grant awarded to Providence Regional Cancer System (thanks to the thousands of votes we received in the online challenge – thank you!). Conference attendees are also invited to the first ever LIVESTRONG “State of the Foundation."

When patients end treatment, they often report feeling lost, abandoned, and unsure of what to feel and do next. End-of-treatment stress is often unexpected because patients anticipate feeling relief when active treatment ends and hoping they can “get back to their lives.” The transition from cancer patient to cancer survivor can be very challenging.

Here's what LIVESTRONG says about Cancer Transitions™

Cancer Transitions™ is a program designed to support, educate and empower people with cancer in the transitional period after treatment is over. This program features written materials as well as interactive components to address the long-term effects of cancer treatment, as well as survivors' psychosocial needs during their transition to life after treatment. The evidence-based program was created with recognized experts in key aspects of cancer survivorship, incorporating information from peer-reviewed literature. Research shows that both men and women who participate can experience:

• Less worry about the negative impacts of cancer
• Better physical and social functioning
• More commitment to physical activity
• Improvements in fat-related dietary habits.

The six-week series incorporates support groups, education, nutrition and physical exercise, as well as addressing other medical management, psychosocial and quality of life issues. The program also provides survivors with practical tools and resources to formulate a personal action plan for survivorship beyond their participation in Cancer Transitions.

Up to 20 participants meet for a 2 1/2 hour session each week to hear presentations from experts, engage in group discussion, and directly address the emotional and social hurdles they face during the transition period following treatment. The program also offers a “booster” session held one month after the program ends, to reinforce many of the proactive behavioral changes discussed during the core program. Men and women who wish to better manage the short and long-term impacts of cancer— especially within the first 24 months after treatment will gain valuable skills through this program. Providence Regional Cancer System plans on offering the Cancer Transitions™ series twice in 2011, spring and fall sessions. There is no cost to participate in this program! Dates and other details will be coming in the next few weeks.

The last (and only other time) I was in Texas was in 1985 at a Houston conference when I was a graduate student. I presented a paper on how hypnosis and other relaxation methods could help chemotherapy patients who were experiencing nausea. No one was talking about Cancer Survivorship. We were just starting to pay attention to how we could better help patients deal with treatment side effects. The National Coalition for Cancer Survivorship (NCCS), National Breast Cancer Coalition, LIVESTRONG, Lance Armstrong Foundation and other organizations did not exist yet. I know we have a long way to go, but tremendous gains have been made in the past 25 years.

I feel privileged to be witnessing the evolution of truly comprehensive care for cancer patients and their families from diagnosis through treatment and beyond. And I feel especially privileged to work with the Providence Regional Cancer System as we grow our survivorship services: Cancer Survivor Blog, New Patient Orientations, Living with and Beyond Cancer evenings, Harmony & Hope event, Integrative Care Services, support groups, an inaugural Survivorship Day in June (details coming in the spring!), and now the Cancer Transitions Program! I look forward to sharing more details about this new program in the next few days from Austin and am happy to answer any questions you post.

Combating survivor's guilt

The following was received via our "Suggest a Blog Topic" feature. If you would like to write in please click here to use the form provided.

I was diagnosed with colon cancer in October of 2009, I had my first chemo treatment in Dec of 2009 and had my last chemo in April of 2010. I had complications from the chemo and radiation that required me to go back to the oncology clinic on a regular basis for labs and fluids through August of 2010. I still have monthly visits to have my port flushed and for routine labs that require me to continue to visit the clinic. There are times when I walk into the clinic and see so many people struggling with their personal battle against cancer and often feel like I am intruding as I am now well into my recovery phase. I find myself feeling guilty as I still have my hair, I am not wrapped in a blanket sick from the chemo, and am sitting next to patients that may see me as ‘too healthy’ to be there.

What you are describing is called "survivor guilt" and it is not at all unusual during recovery from cancer and its treatment. Guilt after surviving a trauma also can occur after war, plane crashes, natural disasters, and other events where people feel they have no control over outcomes. Just as cancer is actually hundreds of different diseases with a myriad of treatments, there are also a variety of emotional responses one may have throughout the cancer journey.

Every individual diagnosed with cancer is on their own journey. The waiting room in a cancer treatment center is filled with individual stories, some very painful and others uplifting and healing. When we focus on the superficial exterior of others, we sometimes miss the complexity and depth of their experience. Some individuals with early stage disease, minimal treatment with few side effects and excellent prognosis suffer more emotionally than those with later stage disease and poor prognosis. Judging what others may or may not be experiencing and then judging ourselves can be paralyzing.

Cancer is not equitable or fair; accepting what you can control and releasing what you cannot can be therapeutic. Some cancer survivors describe that they feel less guilt when they "give back" to the cancer community in some way. The period after cancer treatment ends can be a ripe time for self-reflection and an examination of how to move forward. Seeking help from a mental health professional or spiritual adviser can significantly help cancer survivors process their experience, reassess goals, and realize being in each moment.

You might also like:

• Who is a cancer survivor? What's in a name?
• Soup ladies warm hearts of cancer patients

 Other resources:

• curetoday.com: "Getting Through Survivor Guilt"

What is palliative care? Life-enhancing, supportive care

We hear the words Palliative Care and think end-of-life, hospice, impending death. Then we stop listening all together. Many think there are two separate roads in cancer care, one curative and one palliative with no intersection; that when health care providers recommend palliative care they have given up on us.

Even some providers equate palliation with hospice. Unfortunately, limited understanding of what palliative care can offer has limited the care that cancer patients receive. Palliative Care is patient and family-centered care that focuses on reducing the severity of symptoms and promoting quality of life for patients with a life-threatening disease. And it may be offered at the same time as life-prolonging chemotherapy or radiation. Palliative Care is truly comprehensive care that addresses the physical, psychosocial, practical and spiritual dimensions of cancer and its treatment. Palliative care can provide effective pain management to patients who have years to live. Patients have the most to gain from palliative care when it is started earlier in the treatment process. A recent article in The New England Journal of Medicine found that lung cancer patients who received palliative care had a better quality of life, fewer depressive symptoms, and a mean survival of 2.7 months longer than the group that received chemotherapy alone. An accompanying editorial states, “Perhaps unsurprisingly, reducing patients' misery may help them live longer.” Next time you hear the term Palliative Care, think life enhancing, supportive care.

Sexuality after cancer

Sexual images are everywhere, woven into our daily lives through the airwaves and print media.  Sometimes it feels like cancer is also everywhere, from movie stars to sports heroes to neighbors. Yet, sexuality and cancer are not two words you often see together (unless it is to describe possible side effects from cancer and its treatment).

After a diagnosis of cancer, one may want to literally and metaphorically roll over and just go to sleep.  As one breast cancer survivor tells it, “I am just grateful to be alive, the last thing on my mind is having sex. Besides, after what my body has endured, I cannot imagine my husband wanting to have sex with me.”

Cancer patients often say that no matter how much support they receive; cancer is a very lonely experience. But, consider this ... When I taught college students, I used to tell them, “Be careful who you have sex with because you very well could fall in love with them.” The very hormones and chemicals that are released during sex are the same chemicals and hormones that make us feel attached and less alone. So even if intercourse is not possible, other forms of intimacy can be gratifying and health promoting.

There are excellent and sometimes very amusing (see Prince & the Gun Oil by Deborah Jarvis) resources on sexuality after cancer. There are also therapists trained to help cancer patients deal with sexual issues. You may have lost parts of your physical self due to cancer. Do not assume that your sexual self must be sacrificed also. The most critical body part for sexual satisfaction?  Your mind.   

Will my hair fall out during treatment?

Unfortunately hair loss can be one of the socially obvious and emotionally upsetting aspects of chemotherapy. While some advances have been made, preventing and predicting whether or not you will lose your hair during chemotherapy is unique to each individual. We strongly recommend you talk with your nurse about your specific treatment.

Generally speaking, chemotherapy stops the growth of cancer cells and other actively dividing cycling cells in the body by preventing them from growing or multiplying. Unfortunately, when cancer cells are destroyed other healthy cells are harmed, especially cells of the hair, causing hair loss.

The good news is hair growth does return, usually about 6 to 8 weeks after chemotherapy treatment ends. Your new hair may have a different color or texture; for example, if you had straight, thin hair you may now have a head full of thicker curls.  However, the re-growth may not make the hair loss any easier to accept. One may also lose eyelashes and eyebrows.

Preparing for hair loss can be helpful in alleviating some of the emotions that may occur.

• Purchasing a wig before you begin treatment can help you to match your natural hair color before loss begins. Or, pick a new color! If you have ever wanted to try a different hair color or style, now may be the time.
• Cutting your hair short before beginning chemotherapy can also make your hair loss less devastating. If you do experience hair loss you are more likely to lose it in clumps rather than evenly.
• Finally, experimenting with different fashion accessories such as hats, scarves and wraps may help you to feel “more put together.” Friends and family may even host a head covering party for you!

Hair loss, especially in addition to other side effects of surgery and chemotherapy/radiation, can feel overwhelming. The best advice we can give is be patient and know that this too shall pass. Make a list of things that make you feel good about yourself and put it on the fridge. On those days when you need a pick-me-up, pull down the list and be as tender with yourself as you would your dearest friend. Grab a hat, wig, scarf or nothing at all and get out there!