Year Eleven

Another year of blogging is in the books. I am blessed to be able to continue to advocate and share information about ovarian cancer via this blog. This year, we have witnessed the FDA approval of a PARP inhibitor as a maintenance drug for those with somatic and germline BRCA mutations. There were also a number of ideas for screening tests that may lead to an early diagnosis of ovarian cancer.  More work is needed but awareness of ovarian cancer has improved thanks to individuals, organizations and pharmaceutical companies.

In a quick review, I wrote thirty posts. I had hoped to do more but membership on the Scientific Review Board at Rutgers Cancer Institute of NJ (RCINJ) and prepping for twice a month meetings took time away from more frequent posting.  I find being a Board member to be very rewarding and I appreciate having the opportunity to take part. 

My husband and I also had a chance to travel to the western US to celebrate our anniversary.  Although I hurt my knee halfway through the trip, ( I am on the mend with the help of physical therapy) I was able to see some spectacular scenery.

I will leave you with these scenes and look forward to seeing you in  2019.

Dee
Every Day is a Blessing!

Best Wishes!

To all my followers

Thank you for reading and staying in touch with me. Enjoy this time of year with friends and family.

Dee
Every Day is a Blessing!

Volunteers Needed for a Study on Self-reporting Symptoms During Cancer Treatment

Today I am sharing information about a study being done to determine the experience cancer patients have when reporting symptoms.  Sharyn Carrasco, RN, MSN, APRN is a student in the PhD program in Nursing Science at Texas Woman’s University and is conducting this study. The study has IRB approval. Please take a few minutes to read through the details about the study and reach out to Sharyn if you qualify and are interested in participating. 

 

 “Experiences of Self-Reporting Symptoms by Adults receiving Cancer Treatment”

 

Your voice is needed. Do you have cancer that is inoperable or metastatic and receiving cancer

treatment? Looking for volunteers to participate in a research study to talk about how you self-report

your symptoms.

This qualitative study is patient-focused, and the purpose is to understand your experience and

perspective of self-reporting your symptoms. There were many studies conducted over the past 10

years regarding patients self-reporting their symptoms, yet there were no studies that asked the

patients their perspective and experiences of self-reporting their symptoms. This is the reason for my

study; to talk you, the patient with cancer, about your perspective of self-reporting your symptoms. 

 

So, I am looking for volunteers to participate in this study to learn about how you report your symptoms. As a participant in this study, you would be asked to discuss your experience reporting your symptoms. This conversation will be with Sharyn Carrasco, the oncology nurse researcher, and can take place in person or via FaceTime/Skype. Your participation would involve 1 session, which will be approximately 60 minutes, including follow-up questions. If clarification is needed, one follow-up may occur to validate content, that may last up to 20 minutes.

If you are 18 years or older, have inoperable or metastatic cancer AND receiving cancer treatment,

please contact me for more information or to sign up to participate in this study at 713-503-4261 (text

or call) or email: scarrasco@twu.edu.

Dee

Every Day is a Blessing!

 

 

 

 

With Gratitude

The Conquer Cancer Foundation recently shared a Gratitude Calendar which has become the basis of this post.

Send a note to someone you appreciate telling them why:
I am writing to let all of my followers know how much I appreciate the time you take throughout the year to read and share my blog.

Who inspires you: 
I was inspired by two of the founders of the KOH Ovarian Cancer Foundation  - Gail MacNeil and Lois Myers. They welcomed me to the KOH family in 2006 allowing me to become an ovarian cancer advocate. Sadly both woman passed from ovarian cancer. Yet through the Foundation they founded the support of ovarian cancer research continues.

I make a difference by: 
I have the privilege of being a support volunteer for the Cancer Hope Network. I have spoken to over 50 women diagnosed with ovarian cancer from across the country. I hope that I have made a difference in the lives of these woman to the same extent that the CHN support volunteer I spoke to  on that fall day in 2005 had on me.

I am grateful for: 
My husband, children and their spouses, grandchildren, family, friends, teal sisters and
my gynecologic oncologists who have made these past 13 Thanksgivings possible.


Happy Thanksgiving!


Dee
Every Day is a Blessing!

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 (https://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. 

<->(https://www.aacr.org/patients-caregivers/patient-advocacy/)

ASCO / Cancer.Net
 The American Society of Clinical Oncology, ASCO , welcomes patient advocates as members at the Patient Advocate level (https://www.asco.org/get-involved/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! 

Updated 2022

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!

 

 

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!