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

Of SGO and AACR

SGO

The Society of Gynecologic Oncologist held its annual meeting in Tampa in March. There were a number of studies whose results were presented that are of interest to ovarian cancer patients. The SGO also issued a clinical practice statement recommending genetic testing for all women diagnosed with ovarian cancer and endometrial cancers. The #gyncsm(gyn cancer social media)  chat ( of which I am co-moderator) discussed SGO News during their April 9th Chat. To see the topic questions, read the transcript of the chat or refer to the resources presented during the chat,  please see their blog page. If you want to read through the abstracts from the meeting please visit https://www.sgo.org/wp-content/uploads/2014/03/ABSUPP_3.14.14.pdf

This Foundation for Women's Cancer video shares news from the meeting.

AACR

The American Association for Cancer Research  held their annual meeting early this month in California. While this annual meeting presented research for all cancers there were a number of interesting studies related to ovarian cancer. ( Search abstracts here.) A prospective study of of over 14,000 women in the Child Health and Development study found an association between irregular menstrual periods and the diagnosis of serous ovarian cancer . In  Irregular Menstruation May Predict Increased Risk of Death From Ovarian Cancer.  published online by AACR, 

“It is notable that the 2.4-fold increase in risk of ovarian cancer death we observed for women with irregular/infrequent cycles in this study is close to the threefold increase in risk observed for women with a family history of ovarian cancer in a first-degree relative,” explained Cohn. “Our study finding could lead to better understanding of the 90 percent of ovarian cancers that occur in women with no family history of ovarian cancer and with no known high-risk inherited mutations.”

The results were independent of race, age or weight. I know that my menstruation was very irregular when I was young and again about 5 years prior to my diagnosis. 

It may be too soon but I wonder if irregular menses needs to be added to our discussion of symptoms of ovarian cancer.   

Dee

Every Day is a Blessing!

OC risk and hormone replacement

I learned about this information in a pretty circuitous way. A friend, Sandy posted a link on her blog to an entry in the blog written by Margaret Polaneczky, MD The Blog That Ate Manhattan titled- "HRT Worries- This Time Its Ovarian Cancer again..." which peaked my interest in reading more about the study and effects of hormone replacement on the risk of ovarian cancer.

To summarize , at the recent American Association for Cancer Research (AACR) International Conference on Frontiers in Cancer Prevention research meeting in Philadelphia an interesting poster on hormone replacement was presented based on the results from the European Prospective Investigation in Cancer and Nutrition Project (EPIC). Key findings to date of EPIC can be found here. The study was based on over 125,000 women and results were presented in the poster session named "Menopausal hormone therapy and risk of ovarian cancer in the European Prospective Investigation into Cancer and Nutrition." Click here and scroll down read abstract #B101.The conclusion was "Our results are compatible with an increased risk of ovarian cancer for HT use, especially for women using estrogen-only therapy".

Dr. Polaneczky does an excellent job in her entry to analyze the HRT study in laywomen's terms. I strongly suggest you jump over to her blog and read it. Thanks Dr P.

Small amounts of things can help.Too much of things that can help can cause problems. So things should be done in moderation- including the use of hormone replacement therapies.

Dee

Every Day is a Blessing!Thanks Dr P.

Gyn-Onc Is Reporting on my Clinical Trial at AACR meeting

Dr. Lorna Rodgriguez, my gynecological oncologist at the Cancer Institute of NJ will be making a presentation at the American Association of Cancer Research Annual Meeting in San Diego on April 16th. She will be reporting on the clinical trial I took part in during my treatment in 2005 and 2006.
Her presentation
" Prevention of carboplatin resistance by selenium a phase I trial in women with gynecological malignancies"
is part of the Individualized Cancer Therapy Session. There were early studies done, at Rutgers my alma mater, on mice that showed that Selenium inhibited carboplatin drug resistance. So the doctors at CINJ developed this phase I trial to study the effects of selenium on carboplatin pharmacokinetics ( the process where a drug is absorbed, used,metabolized and gotten rid of ) in women with ovarian cancer. Another part of the study was to find a surrogate marker of the selenium effect. Well it turns out that selenium at the levels tested were well tolerated and did not effect the carboplatin pharmacokinetics. The study also found a possible marker of Se activity in the prevention of carboplatin resistance. Congratulations to my team of doctors- Dr Rodriguez , Dr. Gibbon, Dr. Nieves and Dr. Vaidya on such great work. They truly help me LiveStrong!

Dee