Sessions Older Cancer Survivors and Caregivers – Cancer Survivorship Research Conference Part 2

There were a number of concurrent sessions taking place at the Cancer Survivorship Research Conference so it was difficult for me to decide which ones to attend in person. I will share with you information from the Improving Health and Health care  of Older Americans and Caring for the Caregivers which I found most interesting. .

Improving Health and Healthcare of Older Americans

In this session I learned from Heidi Klein, MD that older Americans ( >65 years of age) was the largest group ( 53%) of cancer survivors. But they are also the group to which we know very little about.  Why? Older adults are underrepresented in clinical trials because many times the age group is ineligible due to the way many trial protocols are written. Currently,  researchers are unsure if the standard of care will apply for those >65 years of age. There is a relatively young specialty called Geriatric Oncology and a group specifically doing research in this area called the Cancer and Aging Research Group.

Dr Supriya Mohile spoke about using the Geriatric Assessment to aid in cancer treatment decision making and to predict which patients will experience acute toxicity of chemotherapy . The geriatric assessment includes functionality, physical performance, cognition, nutrition, social support , etc.  Dr Mohile stated that patients with cancer have had a higher prevalence of geriatric issues. There has been very little research on survivorship issues with the older adult. They do know that with chemotherapy older adults have more neuropathy which leads to more falls.

Dr. Ed McAuley spoke about physical activity interventions and that the median age of those diagnosed with cancer is 65 years. He also stated that only 10% of those 65 years of age and over are meeting physical activity guidelines. Many believe walking is enough but strength training is important too.  Physical activity also has an impact on cardiovascular function. In a study of breast cancer patients, researchers found that the more physical activity patients undertook the less fatigue the patients experienced and indirectly the less depression the patients felt.

Albert Sui , MD explained that longevity is increasing due to better public health, less smoking and cleaner water. With the longevity though come and increase in chronic conditions which cancer patients have to deal with. It was stated repeatedly that doctors need to consider comorbitity issues when treating older cancer patients. 

Caring for the Caregiver

This session began with a presentation by Sharon Manne, PhD discussing Coupled Focused Psychological Interventions for Cancer Patients. Cancer is a family and couple stressor. Her work compared support group interventions for couples( breast cancer dx)  versus an enhanced couple focus intervention. In this study, there was less work absenteeism (one outcome of the study) by the partner in the enhanced couple focused group. They also found the higher the stage at diagnosis the higher the spouse/ partner stress. In a study of prostate cancer patient/ couples, researchers found that the more the patient held back from discussing issues with their partner the lower levels of well-being the partner felt.  

Allison Applebaum, PhD from the Center for the Study of Cancer Caregivers at Memorial Sloan Kettering explained that cancer caregivers are also cancer survivors (NCI definition). Caregivers are at agreater risk for distress and have anxiety regarding recurrences even up to 5 years later so it is important that caregivers learn to manage their stress.

Patricia Griffiths, PhD a gerontologist  spoke about Caregiving Dyads. There is currently a dementia home tele-health model program used by the VA. Programs like this can be modified to reflect survivorship concerns and expanded to Google chats ( which I learned are HIPAA compliant).

Next up post - Survivorship Guidelines.

Dee Every Day is a Blessing!

Cancer Survivorship Conference - Part 1 The Social Ecological Method

The theme of  the Biennial Cancer Survivorship Research Conference was  "Advancing Survivorship Through Multilevel Collaboration" . I heard from social workers, researchers , physicians, advocates, on many different topics which I will start to present in the next few posts.

I heard a term, that was new to me, repeated on multiple occasions at the meeting.  The term was Social Ecological Model or  Method - SEM for short.  The SEM helps you understand the different and ever changing interactions an individual has with others and their environment. Below is a graph of an SEM model from the CDC for colorectal cancer control program. 

http://www.cdc.gov/cancer/crccp/sem.htm

But a similar layout can be used for survivorship. If you notice at the center and overlapping all the other circles is the individual. In the case of cancer survivorship this would be the patient diagnosed with cancer. The next circle, Interpersonal, is for the interactions with caregiver, family and friends, health care providers and patient navigators.  The next level, Organizational, represents the interactions the patient has with their hospital, clinics & health care plans/ insurance company. The fourth level, Community,represents the local cancer coalition groups in the patient's state, the advocacy groups that help raise awareness and communicates about survivorship issues. And the outer level, Policy, represents the local, state and federal agencies that support public policy regarding survivorship issues. 

I found this diagram interesting and empowering. Why? Because as you can see the patient - the survivor - is at the center. I like that patient-centeredness is key to survivorship.  By thinking this way and not in a "silo" the researchers and health care providers will be looking at how the treatment and follow-up care affects us at all different levels. This will help them think about how it is in the real world of the survivor and those we interact with. For example how does "chemo-brain" or reduced cognitive function impact a cancer patient's return to work , or how they interact with their family? Will online, or in person support groups be beneficial to cancer survivors or can the local faith community play a role in improving the survivorship experience of their members. In essence this model or method has the system revolving around the survivor. 

One speaker at the plenary session made a great point in looking at the entire person and their environment. They stated that health care providers should ask their patients before cancer treatment begins what they want to be able to do after treatment. That way they would have the information regarding how the patient wants to interact with their environment. In my opinion, asking that question gives the patient hope that they will have a future. 

Dee

Every Day is a Blessing!

Coming Full Circle with LiveSTRONG and The Cancer Survivorship Research Conference

As many of you know, in 2006 I attended the first LiveSTRONG Survivors Summit. Attending that meeting is what launched my work as a cancer advocate and allowed me to network with a number of other survivors who I continue to be friends with.

This past week once again the LiveSTRONG Foundation played a role in my continued advocacy work. They chose me to receive one of twenty scholarships to attend the Biennial Cancer Survivorship Research Conference: Advancing Survivorship Through Multilevel Collaboration in Atlanta, Georgia. The Conference is co-sponsored by the Center for Disease Control and Prevention, the National Cancer Institute,  the LiveSTRONG Foundation, the Department of Health and Human Services and the American Cancer Society. I am so thankful to the Conference planning committee for including survivors and advocates as conference participants and to LiveSTRONG for providing the informative Survivor Advocate program  and supporting my attendance at this amazing opportunity.

While at the Conference I tweeted in real time using the hashtag #CASurvConf. Below is a sampling  of my posts. You can see even more tweets about the conference if you search on Twitter for the conference hashtag.

Informative session re: big data. Good to see PRO being included. #CASurvConf
— Women of Teal (@womenofteal) June 20, 2014

PRO- Patient reported outcomes

Ganz: survivorship is a chronic disease and we need to use that to move things in Congress etc. #CASurvConf
— Women of Teal (@womenofteal) June 20, 2014

Orby: need to understand cancer characteristics and co morbidity in selfmanagement #CASurvConf
— Women of Teal (@womenofteal) June 19, 2014

Salner: one survivorship visit is not enough . Need to find way to fund continuous monitoring #CASurvConf
— Women of Teal (@womenofteal) June 19, 2014

Mohile: Geriatric assessment can ID patients at risk for increased toxicity. Chemo leads to neuropathy leads 2 falls in older #CASurvConf
— Women of Teal (@womenofteal) June 18, 2014

Goodman : guidelines need to include co-morbidity #CASurvConf
— Women of Teal (@womenofteal) June 18, 2014

Yes we do “@sfuldnasso: Ellen Stovall: "We need a well-funded cancer survivorship program in this country. There's no excuse." #CASurvConf”
— Women of Teal (@womenofteal) June 18, 2014

Although I will not be reporting on every session I attended during the 3 day conference, I will share some insights into the research and topics I found most interesting.  I will cover these topics :

Social Ecologic Methods related to cancer Survivorship - Part 1
Session Highlights -Part 2
Survivorship Guidelines- Part 3
Ovarian Cancer Studies- Part 4
Interesting Interactions - Part 5

Be sure to check back for more information.

Dee
Every Day is a Blessing!

A Woman's Health Interview

I was interviewed a few months ago by a writer for A Woman's Health Magazine. She wrote an article called "Committed to Community" about my advocacy work. Click here to read the article. And please take the time to read the entire Special Section on Ovarian Cancer. The magazine did a great job highlighting ovarian cancer.


Dee
Every Day is a Blessing!

A Question for Ovarian Cancer Survivors

I am helping my gynecologic oncologist in developing a research project. I hope my readers who have been  diagnosed with ovarian cancer will take a moment to respond to the following question.

Would you be willing to allow your ovarian cancer tumor to be genetically profiled in order to identify a personalized therapy for your tumor? Yes  or No 
Feel free to comment further on your response.   

You may leave your answer in the comment section below or you may e-mail me your answer at womenofteal@gmail.com.

Thanks for your help!

Dee
Every Day is a Blessing !

Valisia's 525,600 Minutes - Survivors Day, Rutgers Cancer Institute of NJ

Yesterday, Rutgers Cancer Institute of New Jersey's (CINJ)  held their Annual Survivors Day Celebration. I have been on the planning committee along with 3 other survivors for the past few years. In the past to celebrate National Cancer Survivors Day, we have had authors, breast cancer survivors, wellness days, days reminiscent of being on a cruise ship and tours of CINJ. This year was very special for me.

Back in December,  I learned from a friend's tweet that Broadway star Valisia LeKae had just been diagnosed with ovarian cancer. Valisia was playing Diana Ross in MOTOWN- the Musical and she had to leave the show because of her diagnosis. I tweeted to Valisia that her Teal Sisters were there for her and we began exchanged tweets during her treatments.  So when the time came to suggest speakers for this year's event I immediately thought of Valisia. The committee voted to ask her and I direct messaged her to see if she was interested. When she said yes, I was thrilled.

Yesterday, I got to meet Valisia in person. And what an honor it was for me to introduce her to the more than 200 survivors, caregivers, doctors, nurses, researchers and social workers in attendance.

Introducing Valisia at Survivors Day

Valisia began her talk by asking us if we knew the song 525,600 Minutes from the Broadway show Rent. She was going to tell us what her last 525,600 minutes have been like.

Valisia LeKae

In June 2013, she was walking the red carpet nominated for a Tony Award for her role as Diana Ross. In the fall, she visited her doctor who saw that a cyst on her ovary was getting larger and told her that it should be removed. On December 2nd she learned she had ovarian cancer. Another surgery and six rounds of chemotherapy meant she had to leave MOTOWN the Musical.

During her recovery and treatment,  Valisia told us of the wonderful support she had from so many people. Support from her fellow cast members of MOTOWN  who wrote the original song for her "I am Here (For Valisia)" (https://www.youtube.com/watch?v=U_vkmFaNnuo#t=373 ). (Be sure to have a tissue ready when you watch it. ) Then she spoke of the support and love of her partner- now fiance and how her faith in God helped on her journey with cancer.

Valisia also shared with us her need to spread awareness about the disease. Currently, she is the national spokesperson for the National Ovarian Cancer Coalition and has completed a PSA for Mount Sinai Hospital where she was treated.

During her talk and the question and answer period that followed many of her responses brought tears to her eyes and mine. She was kind enough to share how humming and singing was helpful during treatment and she even sang a song for us. My how this disease can impact our lives and at the same time show us places and experiences we never thought we would have. It certainly was a wonderful day. Thank you Valisia for sharing your story with us.

Yesterday, her 2 month anniversary of finishing chemotherapy, she came full circle- 525,600 minutes later.  It was the night she would appear on the red carpet as a host of the Tony Awards Red Carpet Special on playbill.com.

Valisia and I

My friend Valisia,
I wish you many years of clear scans and many years of lighting up Broadway.  May God bless you.

Dee
Every Day is a Blessing!

It Was Only A...

Stomach bug.
I know that now but I still went through a few days of worry.

Last Friday I woke up tired. And I can't say that I had a sleepless night. Rather I felt rested but after a mid-day lunch with ladies from my community I came home and took a nap. Maybe I should say I went back to sleep for almost 2 hours. And I thought - gee I felt really tired right before I was diagnosed the first time. Did I think I had cancer then? No. But here I was tired and the first thing that came to mind was cancer. The second thing I thought of was the high pollen counts and how maybe I was tired due to allergies.

The next morning my stomach was upset and I  didn't feel like eating but I told myself "get up and out and you might feel better". And that is what I did even though I didn't feel energetic at all. We went to evening Mass and I ate breakfast food ( scrambles eggs / french toast) for dinner just because I didn't want to eat anything to heavy. But within an hour  I got what I call, "grumbly in my tummy",  and had some abdominal pain and cramping and felt even more sick to my stomach and ,well,  let's just say I visited the bathroom more times than usual.

Of course when I woke up on Sunday feeling full and not wanting to eat because I was nauseous my thoughts once again went straight to - bloating , feeling full quickly, upset stomach- the symptoms of ovarian cancer. Oh cr*p, I thought. Just when I thought I was out of the woods. Then of course I started calculating if it was a recurrence would I be done with treatment before my son gets married next year. And I started thinking about how I might have to cancel my attendance at MedX in September. See how my mind works and worries. I spent the day reading and my diet was tea and toast and a little plain pasta for dinner.

Monday I woke up feeling pretty darn good. And now, well,  I feel back to normal.

In a few online groups that I participate in the topic of worrying about a recurrence at the least bit of abdominal discomfort comes up quite frequently. So I know that other women go through the same anxious periods. So even five years out from finishing chemo for my recurrence my thoughts still go directly to another recurrence any time my stomach is upset. Not sure if and when these thoughts might go away forever but I am glad to put this incidence behind me. I just keep having to tell myself - give the symptoms time ( at least 2 weeks ) before I get too nutty.

Dee
Every Day is a Blessing! Blessed by a husband who deals with my recurrence fears with a smile.