Monday, December 28, 2015

Another Year of Blogging, My Eighth

December 30th marks my 8th year writing this blog.When I first began I knew I wanted to raise awareness of the disease, share my story with other women diagnosed with ovarian cancer and disseminate information about cancer survivorship. I wasn't sure how long I would continue posting to Women of Teal. Would I be well enough to post? Would I run out of things to write about?

This is my eighty-first post of the year, more than last year but not as high as 2009 or 2012 years in which  I wrote well over one hundred and fifty posts. When looking back over the past year's posts the majority of what I wrote related to ovarian cancer research ( SGO and ASCO annual meetings ) as well as study results reported in journal articles.

My most popular posts were:

Part 1: Using the Risk of Ovarian Cancer Algorithm for Screening - US launch

Part 2: Using the Risk of Ovarian Cancer Algorithm - UKCTOCS Study Mortality Results

ASCO 2015 - Connections and Knowledge

During the month of September I took the GCAM ( Gyn Cancer Awareness Month) Challenge. I posted each day on gyn cancer topics from ovarian cancer - risks, treatment, genetics to cervical cancer, HPV and precision medicine.  In other posts this year I've written about:
  • books I've read and the book I wrote with Dr Don Dizon
  • what I learned about the CA-125 test and the two lab processes to measure it
  • NED the Band and the Movie
  • The Astra Zeneca Bloggers Conference
  • Presentations I made to Rutgers University AMSA students and  Eye for Pharma's Patient Summit
There were times though when I wrote about more personal issues.  I miss many of my teal sisters and wrote frequently about the effect they had on my life. I look forward to continuing to write in 2016. I do this with the hopes that sharing what I learn at conferences or reporting on the latest research will be beneficial to my followers.

Thank you to all who followed, commented or e-mailed me this year I appreciate interacting with all of you. Please let me know if there are any topics you would like me to write about in 2016 .

See you in 2016!

Every Day is a Blessing!

Sunday, December 20, 2015

Part 1: Using the Risk of Ovarian Cancer Algorithm for Screening - US launch

Last June, when I attended the ASCO annual meeting I was fascinated by a presentation by Dr Usha Menon on the UK Collaborative Trial of Ovarian Cancer Study (UKCTOCS) using the ROCA (Risk of Ovarian Cancer Algorithm) test. I wrote about it here.

Results reported in this JCO article,
Risk Algorithm Using Serial Biomarker Measurements Doubles the Number of Screen-Detected Cancers Compared With a Single-Threshold Rule in the United Kingdom Collaborative Trial of Ovarian Cancer Screening
found that using the risk algorithm detected double the amount of invasive epithelial ovarian cancers, before the CA-125 alone, at a fixed, 35u/ml cutoff. .

Earlier this month I was contacted by a representative of the PR firm that is representing Abcodia, a company that develops early detection tests for cancer. On December 2, 2015  Abcodia launched the ROCA (Risk of Ovarian Cancer Algorithm) test here in the US. After finding and reading my blog, the  firm contacted me to share that the test was now available. Of course I was interested in learning more about this test that was now available in 5 states - Texas, Massachusetts, Illinois, Arizona and my home state of New Jersey. You can find the press release at

We conversed via e-mail and then I had a teleconference with the PR firm's representative as well as the representatives from Abcodia.  Abcodia's  responses to my questions are shown below in quotes and italics. I have permission from Abcodia to share the information provided.

  • What is the difference between the ROCA test and the CA-125, which is one component of the ROCA test? "The ROCA Test does not use CA-125 with a fixed cutoff, instead, ROCA establishes a patient’s baseline, and then evaluates her CA-125 pattern over time."  (CA-125 uses a fixed cut-off of either 35 u/ml or 20 u/ml depending on which test protocol is followed. "ROCA incorporates the CA-125 result (and all the following CA-125), and, factors in age,
    menopausal status and high risk factors, which affect CA-125 levels. ROCA takes all of this data on one patient and creates a unique profile for her.  ROCA then compares her profile to known profiles in a database of thousands of women to see if her profile more closely resembles that of  women who have cancer or women who do not have cancer.  The ROCA Test reports a
    numerical score which represents a woman’s risk of having ovarian cancer (e.g. 1 in 5,000) now. The risk score is categorized as Normal, Intermediate or Elevated as a guide for clinical decisions by your doctor."
  • Who is the ROCA test meant for and when should they have it? The ROCA test is meant for women in the general population who are "Between 50 and 85 years and have been through menopause; or"  high risk women "Between 35 and 85 years with a family history of ovarian and/or breast cancer, are of Ashkenazi Jewish descent with a known family history of ovarian or breast cancer, or have tested positively for BRCA1, BRCA2 or Lynch syndrome gene mutations." The CA-125 may be used for high risk women only. The test would be similar to "Routine testing, just like you would a physical or mammogram." Currently the CA-125 with a fixed cutoff is sometimes used for high risk women only when advised by their physicians. As many of my readers know, the CA-125 is used by gynecologic oncologists to manage the care of women who have been diagnosed with ovarian cancer. 
  • How does the ROCA test compare to the CA-125 in terms of how well it detects ovarian cancer?"When combined with appropriate clinical follow-up, the ROCA Test has been shown to detect more than twice as many ovarian cancers before the current CA-125 35U/ml fixed cutoff. As a screening tool by itself, CA-125 is not reliable and has not been shown to improve outcomes for women with ovarian cancer."
  • How does a woman go about getting the test?  She fills out a form online to see if she is eligible and orders the kit. Then she finds a referring physician (OB-GYN or primary care physician) to sign the request for the test and the blood work. "Abcodia is proactively educating OBGYNs, has a dedicated phone line and online materials specifically for healthcare professionals."
  • What is the cost of the test and is it covered by Medicare, other insurances? "The cost of each ROCA Test is $295. This includes the cost for the Iggbo blood draw service, who will have a trained phlebotomist come to a doctor’s office, a patient’s home or other location of the patient’s choice to draw blood.  Iggbo will then ship the blood sample via FedEx to Abcodia’s laboratory." Abcodia's lab is a CLIA, registered lab. Currently the test is not covered by Medicare or other insurances. "Abcodia does plan to seek regulatory and reimbursement approvals"
  • Can a woman get the CA-125 drawn at a different lab and then submit it to Abcodia? It is recommeded that the blood draw be through Abcodia's blood draw partner, Iggbo. A patient can have her blood drawn at her physician's office or a hospital if a phlebotomist is available. All samples do need to be tested at the Abcodia lab to insure there is no lab to lab variability. CA-125 test results from other labs (Quest, Labcorp) for use with the test are not accepted.
  • What happens after the initial result? "The frequency of the ROCA test will be determined by the woman's doctor based on her risk factors for ovarian cancer and the ROCA test result. Post menopausal women with no additional risk factors will likely have one test per year. Women at high risk for ovarian cancer , will complete the test more frequently, at a minimum three times per year and may include a Transvaginal Ultrasound (TVU). If the result falls outside of the normal range(intermediate or elevated) a doctor may recommend a repeat ROCA test within the next six weeks to three months. Patients may also be referred for a transvaginal ultrasound scan of the ovaries or other possible clinical assessments. "                                
  •  Does the women pay $295 each time she has a follow-up test?"After a patient takes her first test, Abcodia offers the patient several options: 1. The patient can pay per test ($295) for each test. 2.  The ROCA Test Subscription: one for high risk patients and one for the general population.  Abcodia will offer patients a 2 year subscription that includes the Iggbo blood draw, repeat ROCA tests and TVU (Transvagina Ultrasound) as a result of intermediate, elevated or severe ROCA result. 3. Interest free payment plans."
  • Why is the test available in only five states ? Starting in five states will allow the test process to be optimized. The delay with other states is due to each individual state's permit application period and process. Some are longer than others.

This video is an overview of how the ROCA test works.

I have charted my CA-125 results since my initial diagnosis. So monitoring the trends in CA-125 makes sense to me. But there is one caveat, there is a small percentage of women, like myself, who have a CA-125 result that is normal and disease may be still present. My CA-125 was normal at 17 u/ml,  when I learned via CT scan that I had recurred on my liver and spleen. So woman whose CA-125 does not rise may not benefit from this type of screening.

I still had a few questions about applying this test to the general public. I wondered if the ROCA test would find the disease at an earlier stage and if the survival would be longer for women whose disease was detected by this test.   I did not have to wait too long for some of the answers because on December 17th the results were published in the Lancet journal.

Ovarian cancer screening and mortality in the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS): a randomised controlled trial 

My next post will discuss what was reported in this article as well as responses from various ovarian cancer organizations and oncologists.  


Every Day is a blessing!

Updated 12/21/15

Part 2: Using the Risk of Ovarian Cancer Algorithm - UKCTOCS Study Mortality Results

In Part 1 I discussed the Risk of Ovarian Cancer Algorithm screening test and its release in five states in the US.

On December 17th,  Ovarian cancer screening and mortality in the UK Collaborative Trial of Ovarian Cancer Screening (UKCTOCS): a randomised controlled trial was published in the Lancet journal. This was an answer to my question regarding improved survival for those women screened using the ROCA/ CA-125. 

Details:, number NCT00058032
Randomized Trial: 202,638 Post menopausal women 50-74  from England, Wales, Northern Ireland
Three arms:  
1. Annual Multimodal Screening (MMS) using CA-125 and risk algorithm ( 50,624 women ). I call this arm the ROCA test but will use MMS when discussing the study.
2. Annual transvaginal ultrasound (TVU) (50,623 women)  
3. No screening ( 101,299 women) .  The distribution ratio was 1:1:2.

OC was diagnosed in 1282 women of all women
630 cases in the unscreened women with 347 deaths
338 cases in the screened with CA-125 and ROCA 148 deaths 
314 cases in the ultrasound screen group and 154 death. 

One analysis showed less deaths in the MMS and TVU groups but the difference was not significant.
Mortality reduction using the Cox Model for years 0-14 showed a 15% reduction in deaths in the MMS group versus the control group. And there was an  11% reduction in mortality in the TVU group versus the control group. Graphs of the control versus MMS and control vs TVU are the same up to about 10 years. If you look at specific time periods there is a change in mortality reduction. For MMS the 0-7 time period showed an 8% reduction vs control and for 7-14 year time period  there was a 23% reduction in mortality versus the control. 

A second analysis which removed women,who had ovarian cancer before the screening of the trial began and who died early on in the study ( "prevalent cases" in which the change point in the CA-125 occurred before enrollment in the study) found that the MMS group had an average of 20% less deaths for the entire study ( 0-14 years) .

You may view watch this video ( 2hours 40 minutes) of the UKCTOCS Ovarian Cancer Mortality Results Meeting ( includes psychosocial evaluations of participants as well as mortality data ):

During this video it was stated that these early results from the UKCTOCS ( no significant p value)  is similar to the results of the late effect seen in the PSA European study( for prostate cancer) and time is needed to follow-up and confirm late effects. 

Discussion of the results:
There were media articles ( NYT)  written stating that early detection of ovarian cancer was now possible because of this test. 

Medpage- Ovarian Cancer Screening Study Falls Short 

A press release from Abcodia may be found here.

Ovarian organizations commented on the results : 

"While we join the researchers in their optimistic outlook and are hopeful that more positive results will be released in the future, today we must acknowledge that the results do not show that screening works."

“These initial results are promising for the ovarian cancer community, but there is much more data analysis needed in the coming months to determine the true impact on the future of early detection testing for ovarian cancer. We are looking forward to discussions with the community in the coming months to understand how ROCA may fit into the prevention of ovarian cancer."

For me questions still remain.
What was the grade of the women that died during the study?  I know from the previous JCO article that 82% of the  women in the study diagnosed with Ovarian Cancer were high grade. How did that correlate with those who died. 

From the JCO article 41 % of the women dx with OC in the MMS arm were stage 1 or 2. How does that relate to their mortality?

What I wish I knew:
Does the ROCA / CA-125 test work on women earlier than age 50? Those that are pre-menopausal?

If you were able to look at the BRCA status of the women in the study would that effect the results? (Is the test better on those with a BRCA mutation?

As many others during the past few days have said. This is promising but more work needs to be done. 

Every day is a blessing!
updated 12/21/2015

Saturday, December 12, 2015

Hitting the DELETE button

I upgraded my phone the other day. In case the data transfer did not work correctly, I decided to go through my contacts and make sure I had all the important phone numbers.

Right up front under letter B was Jeanne Burton. We met each other at the Rutgers Cancer Institute of NJ support group . We talked a few times by phone but once she moved back to Maine it was mostly texts and e-mails.  She would text me updates- "Found a palliative care doctor", "really like my new oncologist" and " you should come visit" .  I wrote about her move to Maine  here. I regret never getting up to Maine before she passed on June 21, 2015. I wrote about the choices she made here.  I deleted her contact info.

Then under C was Courtney Clifford.  Courtney and I became friends in 2006 at the LiveSTRONG Survivors Summit. She experienced the same symptoms I did and was diagnosed a few months after I was.  The difference was she was 23 years old and I was 50. She was the youngest woman I had ever met who had ovarian cancer. We kept in touch through the years and saw each other at the 2008 LiveSTRONG Summit in Ohio her home state. I appreciated her long distance friendship. Sadly I had to write about her passing in 2012 ( . I deleted her cell phone number.

I got to the letter F and there she was - Pam Favocci. I met Pam at the Rutgers Cancer Institute of NJ Support Group. Over the years we became close friends and together we took part in many awareness activities together. On December 14th she will be gone 3 years.  I honored her in A Friendship Ended Too Soon. I deleted her home number.

Then I got to J and there was Linda Juarez. A few years ago my gyn onc asked if I would talk to Linda. Out of that simple introduction a friendship grew. We both recurred in 2008 and that brought us even closer. We had late night phone calls about clinical trials and texts would arrive during her frequent hospital visits.  She passed in May this year and I  wrote about her here. I deleted her number.

I was a bit surprised when I got to T and I found Rita Kay Thomas' phone number. I forgot I had her phone number in my phone. When I was in college I first met Rita Kay - she was the Assistant Athletic Director. Who knew that our paths would cross 30+ years later. Ovarian Cancer took this amazing woman too soon in October 2012. I wrote about our friendship here. I deleted her number.

I thought about each of those women as I deleted their numbers.

I hated doing it because such a simple action triggered a deep sadness.

Every Day is a Blessing

Monday, November 30, 2015

Behind the Scene but Still on my Team

Over the weekend I read this tweet :
The tweet links to a blog post which describes how a system built by Watson Health using Merge Healthcare data and machine learning can provide an initial recommendation. The recommendation will be based on accessing patient symptoms and cross referencing images with previously diagnosed scans. Basically radiologists could be replaced by machines. The blog ends with recommendations for radiologists to "step into the light".

A friend tweeted

And that got me thinking.

In the past 10 years, my care has included 21 CT scans, 2 PET/CTs, and 11 mammograms. In that time period  I have only met one radiologist. Back in 2005 after being diagnosed with ovarian cancer my gyn-onc sent me for a mammogram to insure that I did not have breast cancer.  I had a script to go that day for a mammogram so they squeezed me into the schedule. After finishing,  the technician asked me to wait for a minute in the room. In walked the radiologist who had called my gyn-onc with the results. They did not want me to wait over the weekend for the results so the radiologist told me my mammogram images were clear. I thanked him and he wished me luck with the chemotherapy treatments.

In every other instance the radiologist who read my scans was behind the scenes. I have copies of the slides of each scan on CDs and also the written report for each scan. The report includes the name of the radiologist who read the scan and wrote the report. The group I use for my scans  has over 50 radiologists listed on their web page.  After years of scans I began to noticed that some of my scans were read by the same person and that was comforting. 

In October 2008, it was a CT scan that found my recurrence on my liver and spleen. (My CA-125 was normal).

So I have lots of reasons to thank the wonderful radiologists at University Radiology for the behind the scenes care they provide.

Becker, MD *
Simoes-DeCarvalho, MD
Winchman, MD*
Needell, MD*
Stein, MD
Amorosa, MD
Epstein, MD
Bramwit, MD*
Tunc, MD*
Lee, MD
Walor, MD
Levitt, MD
Yudd, MD
Einhorn, MD*
Grygotis, MD
Sorkin, MD
Chase, MD 
 *multiple reports

Every Day is a Blessing!

Wednesday, November 25, 2015


Happy Thanksgiving

I am grateful for
my husband
my children and their spouses
my grandsons
my family - sister, brother-in-laws, sister-in-laws, nieces, nephews, cousins,
my dog and my grandpups and grandkittens
my friends near and far
followers of this blog

May you have blessings in abundance.

Every Day is a Blessing

Monday, November 23, 2015

Thankful for: OC Research Support

There are many organizations that raise funds for cancer research. A simple Google search of "organizations that support ovarian cancer research " will give you over 900,000 results. Some of these are large national non-profit organizations with offices and multiple employees with large budgets that support research in addition to other programs such as awareness and legislative advocacy.

But there are also many small, local non-profit organizations throughout the US whose efforts should not go unheralded. They have all volunteer boards, meet in public spaces or around someones dining room table and still manage to make a difference and change the research landscape by supporting established research programs for early detection and treatments as well as young researchers.

Yesterday, I was invited by the GRACEful Hope Foundation to attend their presentation of a check for $30,000 to support ovarian cancer research at Memorial Sloan Kettering Cancer Center. For over 4 years now the GRACEful Hope Foundation lead by the Rocha Family and friends have supported ovarian cancer research to honor the memory of Grace and Erika Rocha.

Another NJ non-profit, Kaleidoscope of Hope Foundation , earlier this year presented grant awards to RACHEL N. GRISHAM, M.D. ,Memorial Sloan Kettering Cancer Center, to support her research on Deciphering the Biologic Predictors of Response to Targeted Therapy in Low Grade Serous Ovarian Cancer ,LILIE LIN, M.D. , University of Pennsylvania,  to support her Pilot Study of a Novel PARP Inhibitor PET Tracer in Ovarian Carcinoma  and continued funding the project of
GEORGE PRETI, Ph.D., Monell Chemical Senses Center,  A Novel Multidisciplinary Approach to Development of an Effective Ovarian Cancer Screening Diagnostic using Volatile Biomarkers. KOH has provided over 2.7 million dollars to support ovarian cancer research in the past 15 years.

Since 2010, The Teal Tea Foundation has supported Dr. Eric A. Ariazi, Fox Chase Cancer Center, Dr. Elyce Cardonick, Cooper Cancer Institute, Dr. Denise Connolly, Fox Chase Cancer Center and Dr. Lorna Rodriguez, Rutgers Cancer Institute of New Jersey.

The Janice Lopez Ovarian Cancer Foundation supports ovarian cancer research through their annual Concert for a Cure.

Two other small non-profit organizations in NJ that support survivors and raise awareness include
Teal Tender Hearts for Ovarian Cancer Cancer Awareness and The Mary Anne Mazanec Ovarian Cancer Foundation

As a 10 year survivor and someone who has benefited from the research supported by these organizations I am thankful for each and every organization that is making a difference in ovarian cancer research.

Every Day is a Blessing!  


Saturday, November 7, 2015

Back on the Banks Sharing My Story

Last week, I was invited to speak to the American Medical Student Association (AMSA) chapter at Rutgers University. I drove up to the Busch Campus of Rutgers and parked across the street from the Medical School where the talk was taking place.

I was so pleased to be back on the Banks of the Raritan since both my undergraduate and graduate degrees were from Rutgers.

As the students slowly filtered into the auditorium I spoke to KN, a senior and my contact person for the group, about her plans for a career in medicine. Instead of standing at the podium and speaking as if I was lecturing I decided to sit in a chair at a table in the front of the room. It felt more comfortable sharing my story in that way. 

I then began telling my story, interspersing stats and information about symptoms and the importance of having surgery done by a gynecologic oncologist with how I felt when first diagnosed. I shared the hope my gyn oncs provided by simply saying they will do everything to make me well. I thought I would talk about 20 minutes but it ended up being closer to 35 minutes. As I finished my talk I told the future physicians that they should take the time to get to know their patients, and ask them what their goals for the future are. I also told them that they should to be ready to work with others - pharmacists, social workers, nurses to provide the best care for their patients. 

When  I finished my presentation I asked if anyone had questions. One student asked if I ever got upset or angry with my doctors. I told them the only time I ever got upset was when I had to wait for my CT results. I told them of the time when I was in treatment for my recurrence. I had tried everything to stay calm but eventually ended up calling the social worker and asked her to intervene to get me my results quicker. Waiting for results is difficult but it has become a little easier now that  results are posted quickly to health records which can be accessed through a patient portal. 

As I gathered up the extra symptom bookmarks and CDC booklets I had brought with me, a few students came up to chat. One young man talked to me about the importance of nutrition for good health. Then a young lady told me she was planning to become a OB/GYN but will now consider becoming a Gynecologic Oncologist after hearing about my relationship with my gyn oncs. That comment made my night. Maybe in 10 years or so I will be reading about this young lady starting her career as new gyn onc in NJ.

Every Day is a Blessing

Monday, October 26, 2015

Cancer Patients on Twitter: A Patient Summit Presentation

Last week Alicia Staley and I presented "Building Community in 140 Characters"at the Eye for Pharma Patient Summit 2015 in Philadelphia. 

Before we talked about the #bcsm and #gyncsm communities we gave some background on Twitter, hashtags, The Health Hashtag Project and research on twitter communities.

Did you know that in June'15:
  • there were 316 Million monthly Twitter users?
  • there were 500 Million tweets sent per day? 
  • 19% of all adults are  on Twitter?

Did you know that the Symplur Healthcare Hashtag Project ( Sept 2015) :
  • includes almost 8000 healthcare hashtags?
  • covers over 15,000 healthcare topics? 

Did you know that patients have been the driving force behind the cancer hashtags and chats? 
Examples of patient let communities include: 
#BCSM-breast cancer social media
#BTSM-brain cancer social media
#ayacsm- adolescent & young adult cancer social media
#gyncsm-gynecologic cancer social media
#lcsm-lung cancer social media 
#panscm-pancreatic cancer social media  #mmsm-multiple myeloma social media
We also presented information from the poster  Dr Matthew Katz, et al  presented at the ASCO 2015 Annual Meeting.
Disease Specific Hashtags for Online Communication about Cancer Care concluded that: 
Hashtags can organize online conversations about health
The use of organized, cancer-specific hashtags on Twitter by a variety of stakeholders in cancer care is not only possible but has grown
Use of the Cancer Tag Ontology (CTO) indicates the potential value of online interaction around specific diseases
Further study is needed to determine whether the CTO: Improves access to accurate information or clinically relevant patient outcomes

Alicia Staley presented information about the #BCSM community including this study published in the Journal of Medical Internet Research which found that 67% of the women who initially reported high anxiety before the chat reported no or low anxiety after participating.

Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey

They concluded that "breast cancer patients' perceived knowledge increases and their anxiety decreases by participating in a Twitter Social Media support group.  

I presented information about the #gyncsm community including what we learned from our 2014 community survey.

Why did you participate?

To chat with others with same interests but from different perspectives

learn, share, support

to help the community of survivors
After participating in the chat:

41% of the participants made a change in your personal or professional routine/practice

37% of the participants advocated for yourself or another

54% of the participants used or refer someone to one of the resources mentioned in a chat or listed on our blog  

 In conclusion we noted that: 

There are active, engaged patients who are helping each other but many also want to be at the table in making changes in healthcare. Come find us on Twitter and listen.

Every Day is a Blessing!

Wednesday, October 21, 2015

Gynecologic Cancer Symposium: Striving for a Healthier Tomorrow, Today

On November 19, 2015 Striving for a Healthier Tomorrow, Today a gynecologic cancer symposium will take place at Mercer County Community College in West Windsor, NJ. 

The Symposium is open to health care providers, nurses, survivors, caregivers  and community members.  This activity has been submitted for approval to provide 5 CEU Credits. 

Medical experts will present discussions on:
  • Research and newest developments 
  • Cancer prevention and detection 
  • Genetic determinants, risk assessment and management
  • Gynecologic cancer impact on sexuality and intimacy 
  • Immunotherapy, diagnosis and treatment, improved risk predictors
  • Patient centered clinical trials
  • A panelist of gynecologic cancer survivors will discuss symptom awareness; personal health choices, fear of recurrence, post-treatment, and life beyond cancer.

Thursday, November 19th 2015 from 8:00 am - 3:30 pm 
The Conference Center At Mercer CollegeMercer County Community College
1200 Old Trenton Rd
West Windsor Township, NJ 08550

How to register:
Online at:

After looking at the agenda there will be a wealth of information shared that day. 

Every Day is a Blessing

Sunday, October 18, 2015

Supporting Those Diagnosed with Cancer - Cancer Hope Network Chrysalis Gala

Last night at Cancer Hope Network's (CHN) Chrysalis Gala, I had the honor of telling my story as an ovarian cancer survivor and a CHN support volunteer . Cancer Hope Network provides one-on-one peer phone support for newly diagnosed or recurrent cancer patients and their caregivers. I have been a support volunteer for over seven years now. Last night at the Hanover Marriott many of CHN's supporters of the past 30+ years were present to celebrate the support provided and to raise funds to continue the support they provide to cancer patients.

Below are the main points I shared with the audience.

2005 started out as a pretty good year. I was looking forward to  celebrating my 50th birthday at DisneyWorld with family and friends -12 in all. In late May during my annual visit with my gynecologist I mentioned a pain I had on the left side of my abdomen. In early June after a transvaginal ultrasound the pain got worse and I ended up in the ER. After an  MRI  I learned my ovaries were enlarged. I was quickly referred to the gynecologic oncologists at the Rutgers Cancer Institute of NJ. 

On July 29th one month after my birthday my world changed. I woke up from surgery and to learn I had stage 3B ovarian cancer. I went into that surgery knowing there was a chance it could ovarian cancer but up to that point I had been more fearful of being diagnosed with breast cancer. My sister passed away from breast cancer at the age of 47.

2 weeks after that major debulking surgery. I started chemotherapy. I chose to be part of a clinical trial. The trial added selenium to the standard of care - carboplatin and taxol. It was tough loosing my hair and developing neuropathy but what I was most upset about was the fact that I had not met one other woman with ovarian cancer. What made it worse - any time I mentioned ovarian cancer the response was – Oh Gilda Radner  who played Roseanne Roseannadanna on Sat Night live have ovarian cancer. Yes– she had that disease. But she didn’t live
I also knew the statistics about women diagnosed with late stage ovarian cancer. Only 30% lived 5 years. I wanted to be in that 30% and I needed to talk to someone who had the disease and lived.

When I saw a brochure for Cancer Hope Network in the waiting room of my gynecologic oncologist’s I picked it up and brought it home. I hesitated at first to call. At the time I wasn’t too keen on calling anyone and talking about ovarian cancer. But one afternoon as I laid in bed too tired to get up I went ahead and called. 

I told the person who answered the phone that I just needed to talk to someone who had ovarian cancer and lived. She took all my information and said she would call back when she had a match. The very next day she called and said she could connect me right then and there with a volunteer named Judy. I spent the next half hour talking to a women diagnosed with stage 3b OC, she lived in NJ, she had the same surgery and chemotherapy ,her son worked at the college my son was attending, and even better Judy was a 5 year survivor. It was wonderful. I was not alone. This meant I could survive too!

When I was out of treatment one year I called Cancer Hope Network and said I wanted to be one of their support volunteers. I did the training and within a week or two I was talking to other women with ovarian cancer. I did that until I recurred on my liver and spleen in 2008 and had to have surgery and more chemotherapy I had to take a break. But once treatment was done I was back on the phone able to offer a perspective of being a survivor of recurrent ovarian cancer. I have been volunteering ever since.

I have spoken to women from NY, Florida, California, Indiana and Kentucky just to name a few. I have spoken to women treated in the top cancer centers in the country and those going to small community cancer centers or their local oncologists. I have talked to women who are a short ride from their doctor’s offices and infusion centers.  And also women who drove eight hours or took a plane and stayed overnight at  hotels when they had treatment. They did all this to get their life saving treatments.

There were women who went to in person support groups and others that took part in online groups. But each and every one of them wanted to talk one –on –one with another survivor who understood. At some point in most of the conversations I have had after I have say  "I felt that way too" the reply has always been the same " thank goodness I thought it was just me."

Thank you Cancer Hope Network for allowing me to provide hope and to give back to other women the hope and support you gave to me.   

I look forward to continuing to volunteer with CHN and to support women diagnosed with ovarian cancer for many years to come.

Every Day is a Blessing! Blessed to have found CHN when I was initially diagnosed.

Thursday, October 1, 2015

It Is More Than Pink and Teal

It is about research.

In October, I see posts online from women diagnosed with ovarian cancer and other gynecologic cancers complaining and peeved about being surrounded by pink ribbons - on TV , in stores, on shirts, etc. Even women who have breast cancer write about how they see pink ribbons on items that appear to just be a way to sell products. They note that the  percentage of money earned from these products actually going to an organization is small.There are other complaints about a large breast cancer non-profit and how so much of the money raised doesn't go to research. Women with metastatic breast cancer are asking to be "seen and heard".  They want a greater amount of funds used for metastatic breast cancer research. I can understand why each person complaining or asking for recognition of ovarian cancer feels the way they do.  And believe me I have my share of teal shirts , earrings, etc and a few pink things too.  In October 2011, I even wrote a post about the "pinking" of the NFL.

My friend Christina and co-moderator of the #gyncsm chat said this on twitter.


So true. But what should that action be?

My life has been impacted by cancer in many ways in addition to my ovarian cancer diagnosis. My sister at the age of 42 was diagnosed with breast cancer and had a mastectomy and chemotherapy. She had a bone marrow transplant when her cancer metastasized. She passed away five years later. It has been twenty years since her passing.  And metastatic breast cancer continues to kill women - as does ovarian cancer in the ten years since my diagnosis.

Why is that? Cancer is a very complex disease. After attending medical conferences and listening to researchers I know that.  But how does spending money on items that are pink or teal for that matter make a difference?So the next time you make a donation to an organization or buy a product check out how much of the dollars raised actually goes to research.

Let's spend money on research. Because  the only way we will be able to understand cancer - breast, ovarian, kidney, lung, pancreatic   is through research.

What will you do to support cancer research?

Every Day is a Blessing!

Wednesday, September 30, 2015

My Women of Teal

Over the past ten years I have met many women diagnosed with ovarian cancer as well as other gynecologic cancers. Some of these women I interacted with in real life - at events, support groups and through ovarian cancer awareness organizations.  Other women I got to know through online groups - Facebook, Inspire or Smart Patients. On this the last day of Gynecologic Cancer Awareness month I write this post to honor those diagnosed as well as to remember the women whose lives were lost to a gynecologic cancer. These women have touched my life. 

In Memory of Women of Teal
Jeanne Burton -NJ, endometrial
Linda Juarez - NJ
Joanie Triestain
Heidi Rogol- NJ
Stella Bentivenga- NJ
Colette Fitzpatrick- UK
Shari R. Widmayer - NJ
Kimberly MacDonald- DE
Teresa Whittle - UK
Grace Rocha - NJ
Erika Rocha - NJ
Dietlind Mayer Lawrence- Michigan
Deirdre Berry, NJ
Maggie - KS
Karen Koop Gregorovic- NJ
Carolie Byng- UK
Laurel Phillips- Texas
Pam Favocci- Wall, NJ
Rita Kay Thomas- Piscataway, NJ
Mary Jean Tonkovich- NJ
Shirley Harris - NJ, Endometrial
Ann Bugdal -NJ,  Endometrial
Nicole Christison- NJ
Mary Ellen Csehi - NJ, Endometrial
Monica Orloff- NJ
Jeanne Moran - NJ
Jo McGowran - UK
Gaynor Hall- UK
Sarah Feather
Patty Higgins
Janet Rigdon
Jayne Armstrong- CA
Ellen Santaniello- NJ
Courtney Clifford- Ohio
Denise Carter- NJ
Mary Slattery- NJ
Lisa Niebert- NJ
Fran- NJ
Lyn Rossi- NJ
Diane Waller, Michigan
Gail McNeil- NJ
Sharon Morris- NJ
Cindy Owens- Va
Ann Hall- NJ

In Honor of Survivors of Gynecological Cancer

Carole F
Lois M
Maria C

...too many lives impacted by this disease.

Every Day is a Blessing!

Tuesday, September 29, 2015

So Many Hashtags

Christina,co-moderator of #gyncsm chat, and I were discussing all the hashtags used during gynecologic cancer awareness month. Christina had compiled a pretty extensive list which I added 7 hashtags too.

Here is our list so far:

#30daysofteal (OCNA)
#actonfacts (@bebrightpink)





#shareitseptember (OCRF)

#takeactionnotchances (NOCC)
#turnthetownteal (Turn the Towns Teal)


Did we leave any out? Please let us know. 
Wouldn't it be great if we could unite behind one or two hashtags for next year? 

Every Day is a Blessing!

Monday, September 28, 2015

A Great Way to Learn

If you have never been to an Ovarian Cancer Survivors Course given by the Foundation for Women's Cancer then you have missed out on a great opportunity to learn the latest about ovarian cancer - what we know about the disease, the lastest and best treatments and how to take care of yourself through all stages of the disease. I have been to three of these courses in the past 10 years, most recently on Sept 16th in Morristown, NJ. 

About 75 people attended the  course which was held at the Carol G Simon Cancer Center at Morristown Medical Center. There were survivors, caregivers, family, social workers and a number of ovarian cancer organizations in the audience. I was happy to see friends and fellow survivors manning the information tables of the Kaleidoscope of Hope Foundation , the NJ chapter of the NOCC, SHARE and Cancer Support Community.

After a welcome by Dr Daniel Tobias, Director of the Woman's Cancer Center, and listening to his patient, Theresa,  discussed how she dealt with her diagnosis, the Course began.

Dr Ilana Cass - Ovarian Cancer:Is Progress Being Made
Dr Allison Wagreich -Genetic Risk and Prevention of Ovarian Cancer 

Nana Tchabo -Clinical Trials and New Treatments

Dr Mark Einstein- The Importance of Being Treated by a Gynecologic Oncologists (l) , Dr Micheal Pearl - Supportive Care the Women with Cancer (center) and Dr Daniel Tobias during the question and answer period. 
Just a few of the important points shared during the Course :
  • Surgery by gynecologic oncologists  who do large numbers of patients can improve survival.
  • Neoadjuvant chemotherapy is not inferior to primary debulking surgery.
  • The Cancer Genome Atlas  has provided information on genes responsible for OC.
  • Exercise can improve quality of life which improves survival.
  • Familial cancer syndromes include BRCA1,2 and Lynch Syndrome.
  • 3-7% of the women with the BRCA mutations undergoing Risk Reducing Surgery were found to have cancer in their tissue.
  • Clinical trials are NOT the last resort. 
  • Making progress against cancer is dependent on clinical trials
  • "Palliative Care is appropriate at any time during management of a serious illness." 
  • Palliative Care is beneficial, improves survival and reduces cost.  

Check for future courses here.

Every Day is a Blessing! Blessed that the Foundation for Women's Cancer mission is to educate survivors and caregivers.

Sunday, September 27, 2015

Awareness Campaigns

There are many local and national organizations that are helping to raise awareness this month and every month. Here are some examples.


Share this poster as a way to raise awareness. 
Go to the website ( , print out the poster and share it.

Turn The Towns Teal®

Hanging teal ribbons on trees and post signs in towns across this country. 
Photo from Turn the Towns Teal website.
I love seeing ribbons as I drive around NJ. Check out their website for more information and put it on your calendar as something to do next year!

In support of Turn The Towns Teal® , Folonari wine and Frederick Wildman and Sons will donate $10,000 to Turn The Towns Teal® for the first 10,000 selfies of people wearing teal on social media that are tagged with #turnmyselfieteal  . See for more information. 

Teal Toes

This campaign in which women ( and some men and even pets) paint their toe nails TEAL was founded by Carey Elizabeth Fitzmaurice (1968- 20015).  It is the perfect way to start a conversation about ovarian cancer. I've painted my toes TEAL every September since hearing about it.

Do you know of other unique or fun ways to raise awareness of a gynecologic cancer?
Please let me know and I will add to this page.

Every Day is a Blessing!

Saturday, September 26, 2015

"It's about your loved ones too" Cote De Pablo

For the past few years the CDC has been raising awareness of gynecologic cancers during Gynecologic Cancer Awareness month. They have done this through print ads and  public service announcements on the radio and TV. This year's PSA is Cote de Pablo speaking about cervical cancer and getting tested.

There are symptoms for gynecologic cancers which the CDC highlights in this year's PSA "Are you Listening" .

Every Day is a Blessing!

Friday, September 25, 2015

50 States of Teal

In 50 States of Teal: Ovarian Cancer Care Across America OCNA has evaluated the performance of each state in the US in 10 areas of ovarian cancer care. The metrics include prevention, treatment, survivorship,  and end-of-life care.

New Jersey scored 8 out of 10 and better than 42 other states.

For the complete report on NJ please visit 

Every Day is a Blessing! 

Thursday, September 24, 2015

An Introduction to Genetics and Ovarian Cancer

When I was diagnosed with ovarian cancer I decided to learn as much as I could about the disease. While I was in treatment I was offered genetic testing for BRCA1 and 2 which I accepted. Our knowledge about the genetics of ovarian cancer has grown tremendously over the past ten years.

Let's start with this basic video from the NCI on genetics and cancer. 

Now let's talk about ovarian cancer in particular. 

About 15% of the ovarian cancers diagnosed are due to germline (inherited and passed on to offspring)  mutations in the BRCA1 and BRCA2 genes. Having these mutations increases the risk of ovarian cancer by 15-50%. “Nearly one-third of women with hereditary ovarian carcinoma have no close relatives with cancer, and 35% of women with hereditary ovarian carcinoma are older than 60 years at diagnosis”( NCI) .  The remaining ovarian cancers are due to what we call sporadic or somatic mutations. 

Following the BRCA mutations the next inherited syndrome that leads to ovarian cancer is Lynch Syndrome.  Mutations in the MLH1, MSH2, MSH6, PMS2 and EPCAM genes are linked to Lynch Syndrome.  Women who have Lynch syndrome have an estimated 9-12 % lifetime risk for developing ovarian cancer. (

In June 2011, the The Cancer Genome Atlas (TCGA) Research Network issued the results of whole-exome sequencing of ovarian cancer tumors. They examinesd the protein-coding regions of the genome, of 316 ovarian cancer tumors. 

The study found :

21 percent of the tumors studied showed mutations in BRCA1 and BRCA2 

six other statistically recurrently mutated genes: RB1, NF1, FAT3, CSMD3, GABRA6 and CDK12. CDK12 is involved in RNA splicing regulation 

96% of ovarian cancers had a T53 mutation. T53 controls a tumor suppressor protein that stops cancer from forming

108 genes were associated with poor survival

85 genes were associated with better survival

68 genes that could be targeted by existing Food and Drug Administration-approved or experimental therapeutic compounds 

Four related subtypes of ovarian cancer based on the patterns of DNA methylation—a chemical reaction in which a small molecule called a methyl group is added to DNA, changing the activity of individual genes. 

The SGO released a Clinical Practice statement in 2014 stating that all women diagnosed with ovarian, tubal and primary peritoneal cancer regardless of age or family history should receive counseling and offered a genetic test. ( ) Knowing a women has a BRCA mutation may allow her to receive PARP inhibitor treatment . Olaparib was recently approved by the FDA to treat women with recurrent ovarian cancer. 

In August  ASCO issued an updated policy statement on genetic and genomic testing. (

The more researchers understand the genetics of ovarian cancer the better they can  develop drugs to treat specific mutations and the more personalized women's treatment can become. 

Every Day is a Blessing! 

Additional Sources:

Lynch Syndrome and Ovarian Cancer
I Have Lynch Syndrome
 Ovarian Cancer : The Choice to Be BRCA Tested