Friday, November 2, 2018

Becoming a Research Advocate

Yesterday, I had a phone conversation with a stage 4 ovarian cancer survivor who was interested in becoming a research advocate. We met on Twitter and have followed each other for the past few months. She asked me questions about how I got started in advocacy and places she could go to prepare to  become a cancer research advocate. In  A Bit of Advocate in All of Us an article I wrote for SHARE 
(https://www.sharecancersupport.org/2017/01/a-bit-of-advocate-in-all-of-us/ ) I wrote about different types of advocacy. Today I want expand on that information I provided on  research advocacy. 

General Cancer Research Advocacy:

Research Advocacy Network - (http://researchadvocacy.org/)
RAN offers downloadable resources on topics such as those listed below that a research advocate can find beneficial.
Tutorial:Genomics in Cancer
Tutorial: Molecular Diagnostics in Cancer
Tutorial: Pathology and Tissue Research
Tutorial: Understanding Cancer Risk
Tutorial: Understanding Clinical Trial Design
Tutorial: Quality of Life and Patient Reported Outcomes
Tutorial: Biomarkers in Cancer

RAN also offers an online course on The Basics for Research Advocacy (http://researchadvocacy.org/advocate-institute/online-course-basics-research-advocacy)


AACR
The AACR (American Association for Cancer Research, www.aacr.org)  has programs specifically for research advocates.  I know a number of advocates, ovarian and other types, who have participated in the Scientist<-> Survivor Program at the AACR Annual Meeting."The program provides advocates with special lectures using lay language, small group discussions, and other opportunities for the exchange of information on key aspects of cancer research, survivorship, advocacy, and public policy." The deadline for the program at next year's AACR program is December 11,2018. Follow this link - https://www.aacr.org/ADVOCACYPOLICY/SURVIVORPATIENTADVOCACY/PAGES/ANNUAL-SCIENTISTHARR%3bSURVIVOR-PROGRAM-AT-THE-ANNUAL-MEETING___01696D.ASPX for more information and the online application.

ASCO / Cancer.Net
 The American Society of Clinical Oncology, ASCO , welcomes patient advocates as members at the Patient Advocate level (https://www.asco.org/membership/member-benefits/patient-advocates). This membership allows patients/advocates access to savings on registration at meetings, magazines, guidelines and volunteer opportunities.  
The Foundation arm of ASCO is Cancer.Net. "The Conquer Cancer Patient Advocate Scholarship Program provides scholarships for patient advocates to attend ASCO-sponsored Symposia and the ASCO Annual Meeting to learn of important advances in their areas of interest. Scholarships help cover travel, hotel, and registration expenses and are based primarily on financial need, advocacy experience, and current advocacy activities and involvement." This link (https://www.cancer.net/research-and-advocacy/patient-advocates/conquer-cancer-patient-advocate-scholarship-program) will provide information on the 2019 meeting scholarships when the application period opens.

Ovarian Cancer  Research Advocacy Information 

Ovarian Cancer Research Alliance
OCRA (ocrahope.org ), formerly OCRFA,  provides information on various types of advocacy. On their Research Advocacy Page (https://ocrahope.org/advocacy/research-advocacy/)  you can read reports on research from their advocates who attend various medical conferences and meetings. While those who represent OCRA as Research Advocates are by invitation only, the stories of a few advocates such as Annie Ellis and Susan Leighton can provide additional ideas for roles you can play in supporting research.

OCRA also has a program known as Advocate Leaders which is a legislative advocates program. (https://ocrahope.org/advocacy/advocate-leaders/


FORCE 
Facing Our Risk of Cancer Empowered (http://www.facingourrisk.org/index.php)
"The FORCE Research Advocate Training (FRAT) Program is a basic educational course aimed at preparing people to become engaged in research advocacy on behalf of the hereditary breast, ovarian and related cancers community. " After filling out an application and being accepted into the Training program you take part in a number of webinars. You may learn more at http://www.facingourrisk.org/research-clinical-trials/research-advocate-program.php

I hope this helps other women get started as Research Advocates. If you know of other research advocate opportunities or training please let me know and I will update this page.

Thanks T for providing the spark I needed to write this blog post. 

Dee
Every Day is a Blessing!


Friday, October 5, 2018

Answering the Questions We All Have About Sugar

Today when I checked out the latest postings to Beyond the Pink Moon, a closed international support group for those with breast and ovarian cancer, I ran across a post by Cathy Leman, a dietitian and breast cancer survivor. She shared with the group a recent post she wrote on her blog,  dammadaboutbreastcancer.com about sugar and cancer. I found it so informative that  I asked Cathy if I could share it in its entirely on this blog. Thank you Cathy for allowing me to share such valuable information with my followers.


The True Does Sugar Fuel Breast Cancer Story

Sugar, in all its stark white, sparkling glory is an enormously popular, widely misunderstood, and hotly-debated topic in the breast cancer world.

Rarely a week passes when I don’t hear or read “Sugar feeds breast cancer.” proclaimed with absolute certainty.
People accept this declaration as truth, yet I ask; does it really?
The annual October convergence of breast cancer awareness with the sugar-overload of Halloween is the perfect time for sharing sweet words of wisdom with my readers about the ubiquitous ingredient we love to hate and debate.
First, let’s make one thing clear. When I write about breast cancer nutrition, foods or diets, the first thing I do is hit the research. I’m a dietitian. I have a bachelor of science degree in nutrition. I will say this until the day I leave this earth – nutrition is a science, not an opinion.
While everyone rightly deserves to have their own opinion about nutrition (and foods and diets), I’m not “everyone.” I’m a nutrition professional AND a breast cancer survivor.
I have a professional, ethical obligation to write from the science, and a personal mission and purpose to develop and share trusted nutrition information that serves my breast cancer community. (1)
I take both very seriously.

What You Need to Know About Sugar NOW

So I asked myself what non-sugar-coated information would be most helpful for someone newly diagnosed, feeling frustrated and confused because they couldn’t find consistent answers to their questions about sugar and diet.
Here’s what I came up with:
  • will sugar really kill me?
  • is sugar really horrible?
  • does sugar cause cancer?
  • does sugar make cancer grow?
  • should I cut out sugar completely?
  • does sugar affect the chances of recurrence?
  • what amount of sugar can I eat and still be as healthy as possible going into treatment?
I then thought about the person who perhaps doesn’t give a rat’s ass about the science, feels overwhelmed and impatient by the idea of sifting through pages of conflicting online information and believes doing so would be about as effective as herding cats, and just wants to be told what to do.
If that’s YOU. . .

Start Here.

There are literally hundreds of studies and reams of information on sugar and breast cancer; there’s no way I could possibly cover it all in this single blog. Watch for more on this topic, but for the purpose of this article, here are my goals:
  • Provide a quick “Carbohydrates 101.”
  • Give you a tiny taste of the current research/science.
  • Provide a sweet guide to help you put this information into practice.

A Little Carbohydrate Background

Carbohydrates are one of three macronutrients (protein and fat are the other two) necessary in the diet to support energy, growth, and life, and include a wide range of starches, sugars and fiber.
Some sugars are NATURALLY OCCURRING, like the sugar found in fruits, vegetables, whole grains, and some dairy products. Other sugars, such as high fructose corn syrup, are produced commercially and then ADDED to foods.
“Carbohydrate” is a category that includes a wide range of starches, sugars (both naturally occurring and commercially produced), and fiber.
There are many TYPES of sugar, which are classified by chemists according to their chemical structure i.e. monosaccharides (single, simple sugars) and disaccharides (two simple sugars joined together), and several FORMS of sugar, i.e. glucose, fructose and galactose, which come together to create even more forms of sugar, like the lactose in milk (glucose + galactose), and the maltose found in molasses (glucose + glucose.)
The concern for newly diagnosed and metastatic patients is that sugar “feeds” cancer, making it grow faster and uncontrollably, hastening its potential and/or further spread throughout the body.

For patients undergoing treatment, there may be concern that sugar interferes with chemo and/or radiation. For women without a breast cancer diagnosis or are “NED” (no evidence of disease) post-treatment, the concern is that sugar will “cause” an initial cancer diagnosis or a recurrence.

A (very small) Taste of The Current Research

  1. Including “naturally occurring” sugars in your diet from fruits, vegetables, whole grains and dairy (i.e. PLAIN cow’s milk versus chocolate or other “flavored” milks which have ADDED sugar) is an eating pattern you can feel comfortable about. These naturally sweet (or “savory” whole grain) foods not only provide energy-rich carbohydrates, they’re loaded with vitamins, minerals, fiber, antioxidants, and phytochemicals versus only the empty calories of most added sugars. (2)
  2. Sugar does indeed feed cancer cells, as well as ALL of your other cells. Every cell in your body uses glucose (the “broken down” form of carbohydrate) for energy. Even on a no/low carbohydrate diet, your body transforms protein and fat into usable glucose (blood sugar) to support the function of your brain (which can use ONLY carbohydrate for energy) and all your other tissues.
  3. Because cancer cells are especially “hungry and hyperactive,” they consume glucose more quickly than non-cancerous cells. With the help of a radioactive compound very SIMILAR to glucose that allows detection of the metabolic activity (hungriness and hyperness) of cancer cells, medical professionals are able to see this phenomenon during a PET (Positron Emission Tomography) scan.
  4. Cells use sugar like cars use gasoline. Normal cells use a reasonable amount of gas, but because cancer cells divide at faster rates than normal cells, they’re gas (sugar) guzzlers. (3)
  5. Compelling epidemiologic studies have shown that dietary sugar intake has a significant impact on the development of breast cancer, but the data is inconsistent and the mechanism is unclear. One proposed mechanism for how sugar impacts breast cancer is through inflammation (obesity is a strong driver of systemic inflammation.) In one study, sugar did accelerate and promote the development of breast cancer in mice fed the equivalent of the average sugar consumption by the American population – 70 pounds/person/year according to this particular study – through changes in metabolic signaling pathways and the expression and production of certain proteins linked to the inflammatory response. Takeaway: sugar DID NOT DIRECTLY cause breast cancer, rather, it exerted influence on a particular signal and pathway involved in promoting its development. (4)
  6. Another very small study, again, done on mice and only certain types of breast cancer cells in culture and for select chemo medications, indicated that sugar may interfere with the body’s response to and effectiveness of chemotherapy, calling for further investigation to achieve definite outcomes and practices for real-life applications. (5)
  7. When carbohydrates are eaten, the body increases its output of insulin to help return post-meal blood sugar levels to normal. Failure of insulin levels to return to normal after the blood sugar is cleared indicates insulin resistance and high levels of insulin remaining in the blood. Insulin resistance can result from obesity and inactivity; insulin resistance is associated with higher breast cancer recurrence risk. (6)

A SWEET Guide To Help You Navigate Sugar Challenges

  • Aim to keep your ADDED sugar intake to 10% or less of the TOTAL calories you eat daily:
    • For example, if you eat 2,000 calories per day, all the calories you eat from ADDED sugar for the entire day would equal 200 calories. Remember, that’s CALORIES not grams, there’s a difference (see below.)
  • Added sugars are found in:
    • candy, cookies, cake, pie, brownies, muffins, sweet rolls and pastry, ice cream, sorbet, gelato, sweetened beverages like juice-drinks, fruit punch, sports drinks, sweetened iced tea, bottled smoothies, soda and coffee drinks, cereals, some breads, ketchup, barbeque sauce, spaghetti and tomato sauces, flavored milks (plant-based and cow), flavored yogurt, protein and cereal bars, salad dressing, canned baked beans (this is NOT a definitive list – check ingredient labels!)
  • 1 gram of sugar has 4 calories:
    • If a food label shows 5 grams of sugar in one serving, that food gives you 20 calories of sugar (5 grams x 4 calories.)
  • When choosing packaged foods, look at the “ingredients” label.
    • If you see any of the following terms, you’ll know there is ADDED sugar: brown sugar, corn sweetener, corn syrup, dextrose, fructose, glucose, high-fructose corn syrup, honey, invert sugar, malt syrup, maltose, molasses, raw sugar, sucrose, trehalose, turbinado sugar.

What 200 calories/day of Added Sugar Looks Like

Breakfast

  • 1 packet instant maple and brown sugar oatmeal; 12 grams sugar (48 calories from sugar)
  • 1 cup vanilla almond milk; 13 grams sugar (52 calories from sugar)

Lunch

  • 2 tablespoons honey Dijon dressing; 5 grams sugar (20 calories from sugar)
  • Mixed greens salad with 1 ounce candied walnuts and 2 tablespoons dried cranberries; 9 grams sugar + 13 grams sugar (88 calories from sugar)
Surprise! You’re already at 208 calories from sugar and your day’s not even over.
This example isn’t meant to prevent you from eating ANY added sugar, rather, to give you an idea of how added sugars can creep in without you being aware. This is an easy fix!

Fix It Like This. . .

Choose plain instant oatmeal and add 1 teaspoon honey, use plain (no-sugar-added) vanilla almond milk. Add olive oil and balsamic vinegar to your salad, raisins vs dried cranberries (raisins have natural vs. added sugar) and non-sugared, toasted walnuts.

Sources

  1. Code of Ethics for the Nutrition and Dietetics Profession
  2. “Does Sugar Feed Cancer?”
  3. “Does Sugar Feed Cancer? It’s Not That Simple.”
  4. “Dietary sugar induces tumorigenesis in mammary gland partially through 12 lipoxygenase pathway”
  5. “Modification of dietary sugar on the chemotherapeutic potential in breast cancer”
  6. “Obesity, Insulin Resistance and Insulin”

If you would like to see the photos that accompany the post please visit http://dammadaboutbreastcancer.com/sweet-guide-help-navigate-breast-cancer-sugar/ .

I hope you learned some important new facts from this post. 

Dee
Every Day is a Blessing!
 

 

Monday, October 1, 2018

Raising Awareness with an Ocean View

Due to personal commitments and a knee injury it took me until the end of September before I could take part in an in-person event for Ovarian Cancer Awareness Month. I have been taking part in Kaleidoscope of Hope Ovarian Cancer Foundation walks for almost 10 years now. Why do I choose these walks in particular? ( There are three KOH walks a year in NJ.) As a cancer research advocate I strongly support KOH foundation because it focuses on raising funds to find an early detection test and better treatments of ovarian cancer research.

This third KOH walk took place on the Boardwalk in Avon-by-the-Sea and continued into neighboring Belmar. It was a beautiful day for a walk. Although I didn't walk based on the advice of my physical therapist my husband registered and walked 5 miles.

It was wonderful meeting up with the ovarian cancer survivors I have gotten to know but at the same time it was bitter sweet as  I remembered Erika, Grace, Carole, Gail M., Lois, Shari, and Pam.

Enjoy these photos.
The beautiful Atlantic Ocean.
President Lynn welcoming the walkers
Symptom signs were found on the beach.

A bagpipe group leads the returning walkers


One of many signs.

Passing of the torch from Ovarian to Breast Cancer Awareness Month

Dee 
Every Day is a Blessing!



Tuesday, September 11, 2018

Ovarian Cancer Awareness Month Reflections

Earlier today I took part in a #WEGOHealthChat. The topic was how advocates share their story online. I tweeted that I felt being sincere and sharing both the physical and emotional side was important.

I should practice what I preach. So here I go. Let's talk about September - Ovarian Cancer Awareness Month. Having a month dedicated to all gynecologic cancers and ovarian cancer in particular makes me very happy.

Ovarian Cancer Awareness month is a good thing. Women, young and old and their primary care physicians need to be aware of the disease and its symptoms. Read more about the symptoms here .

I enjoy seeing TEAL, the awareness color of ovarian cancer,  on buildings, bridges, billboards and on ribbons all over town. I found teal on my vacation.

Teal quilt at the Oregon Trail Museum

The awareness walks and other events that raise funds for ovarian cancer research are also important. You can find OCRFA partners as well as NOCC Chapters running events in most states in the US this month.  Research is key to finding a cure and more effective treatments and some of these events are ways to raise funds for research. There were few events in NJ when I was first diagnosed in 2005. This year,  I could take part in an awareness / fundraising event every weekend and even during the week. I appreciate all the work being done by these organizations to support women diagnosed with all types of ovarian cancer.  If my knee cooperates, I hope to be walking later this month in the Kaleidoscope of Hope Ovarian Cancer Foundation Valerie O'Rouke Foley Avon walk,  which raises funds for research.

But I am going to be honest with you I don't always feel happy.  There are times during Ovarian Cancer Awareness Month when I feel SAD. I am sad when I look at my blog's Memorial Wall and see the names of  50 women and this only includes women I knew in real life not others I interacted with but I never met.

And  I am sad when I see those "walking in memory of " signs you wear during awareness walks.  I love being honored when friends add me to their "walking in honor of" list but I miss my friends. I miss Carole, Pam, Rita Kay, Lois, Courtney and so many others.

The first year the Stand-Up to Cancer show was broadcast, I was happy to see such a strong focus on cancer research. As my advocacy work increased I made friends with many who were diagnosed with cancers other then ovarian. Some even attended the broadcast.  Even now I am glad to see the  research being supported by this event but when I see the some of the presentations and hear the stories, I feel overwhelmed with sadness for those no longer with us. This year I didn't watch the Stand-Up to Cancer show. I decided I needed to take a break.

Is it "survivors guilt"? Maybe. Once the month ends I am sure the emotions I feel now will cease.  They usually do.

Do any other survivors feel happiness along with sadness this month?


Dee
Every Day is a Blessing!







Sunday, August 19, 2018

Medically Underserved Individuals and BRCA Testing Study Results - JAMA article

Knowledge of whether or not you have a hereditary BRCA 1 or 2 mutation can impact the treatment decisions of women diagnosed with breast and ovarian cancer.

Last week, researchers reported the results of an analysis of the Southern Community Cohort Study (JAMA). From 2002-2009 over 49,000 women were recruited to the Southern Community Cohort Study from community health centers in twelve southeastern states. Of those women 2002 had breast, ovarian or both cancers. Of that group 718 (62% black and 33% white; 689 breast cancer and 30 ovarian cancer) were covered by medicare. Sixty-two percent of the women reported an annual income of less than $15,000. Ninety-two of the 718 women would qualify to have Medicare cover the cost of BRCA testing.

Amy Gross, PhD Vanderbilt University reported that of those 92 women only 8 had BRCA testing within five years of diagnosis.  Analysis of the medical records from the twelve states showed that Arkansas, Louisiana, Tennessee, and West Virginia had zero tests.  When data from 2000-2004 was examined it was found that no eligible women were given a BRCA test. Later years showed an increase in testing but in 2010-2014 only ~ 15% received the test. “This testing rate is lower than what I have seen reported in terms of any other study with the same time and eligibility constraints,” Gross said.(VUMC Reporter) The numbers did improve over time

While the sample size is small there could be a few reasons for why the numbers are so low including lack of interest on the part of the patient, lack of referrals for testing by physicians or lack of available resources. The researchers concluded that "novel strategies are needed to ensure that medically underserved women with cancer receive appropriate referral and access to genetic testing."

After reading this report I wonder...
How these numbers from medically underserved individuals compares to women covered by other insurance plans and/or those treated at larger cancer centers during the same time period?

We know that BRCA status is critical in deciding which treatments a women with ovarian cancer provide the most benefit but it also impacts the ability of family members to reduce their risk of breast and ovarian cancer. What can we do to insure that all women diagnosed with epithelial ovarian cancer have access to BRCA genetic testing as recommended by the SGO.

Dee
Every Day is a blessing! 

Monday, August 13, 2018

Summer Blogger Challenge - Nancy's Point


I have followed Nancy's Point written by Nancy Stordahl for a while now. I  reviewed her book on this blog in 2016. When she posted a blogger challenge I thought - Why not.  So here goes.


How long have you been blogging (or reading blogs)?
I have been blogging since December of 2007. 

How has your blog changed?
This blog originally was more a way to share my experience as a late stage ovarian cancer survivor. As my role as an advocate became more research focused my blog has morphed into more of a place to hear the latest news about ovarian cancer research - from conferences like ASCO, AACR and SGO as well as newly published studies and clinical trial designs. I continued to weave my experience into a few blog posts a year. 

What is your biggest blogging challenge/frustration?
Finding the time to blog. 

What is your favorite post that you’ve written (or read)?
I think it is probably the one I wrote for the 10th Anniversary of writing this blog. http://womenofteal.blogspot.com/2017/12/reaching-milestone-this-blogs-10th.html

What are your goals for your blog? (Why do you read blogs?)
I hope to continue to share information about the latest research and approved drugs for ovarian cancer. 

How many blogs do you read on a regular basis? 
I probably read about a half a dozen - some by individuals I know and some blogs from organizations. 

How do you determine what to share and what not to share; in other words, do you have blog boundaries? (or comment boundaries)
I will only post things of interest to women diagnosed with cancer or relevant to my journey with the disease. I do not share any political commentary although I will share if I have written to Congress about a specific bill of importance to cancer patients. 

When things get hard, what keeps you blogging (or reading blogs)? 
I don't worry about blogging as much as I did initially. Sometimes I place an undue burden on myself such as when I say I will write something new every day during September - Ovarian Cancer Awareness month. I did that twice and it really stressed me out. So I just wait till I get and idea or read something I want to share to blog. 

What is your biggest Cancer Land pet peeve today, right now, this minute?
Biggest peeve - When I read articles online about the latest "cure" and it turns out the treatment has never been tried in humans.  

What one piece of advice would you offer to a new blogger?
Just do it! Start off with a simple layout and write about what is important to you. There is someone else out there who will benefit from what you write. 

Share something most people do not know about you. A secret sort of thing.
I love Disney World and my favorite character is Winnie the Pooh. I can't wait to see the latest movie. 

What do you enjoy doing in your spare time?
I love to paint quilts and dogs with an occasional  landscape. Painting relaxes me and makes me forget my worries.

 Dee
Every Day is a Blessing!