Wednesday, August 24, 2016

Between a Rock and Hard Place - Surveillance after an Ovarian Cancer Diagnosis

The Study:
A recent journal article in JAMA Oncology,  " Use of CA-125 Tests and Computed Tomographic Scans for Surveillance in Ovarian Cancer"  concluded
"CA-125 tests and CT scans are still routinely used for surveillance testing in patients with ovarian cancer, although their benefit has not been proven and their use may have significant implications for patients’ quality of life as well as costs."

I am unable to read the entire article since it is by subscription only but will summarize the information that was provided and in other articles I read regarding the research.

In 2009, a study (Rustin)  found that treating ovarian cancer recurrence on rising cancer antigen blood test CA125 increased the use of chemotherapy treatment and decreased quality of life.

This prospective cohort study of over 1200 women, in remission after initial surgery and chemotherapy, took place at 6 NCI Comprehensive Cancer Centers. They looked at the use of CA-125 and CT scan before and after 2009.

The results showed the use of CA-125  and CT scan before and after 2009 was similar. In those women whose CA-125 doubled there was not difference in re-treatment before or after 2009. The study found in a 12 month period "a mean of 4.6 CA-125 tests and 1.7 CT scans performed per patient". They found that this resulted in  "a US population surveillance cost estimate of $1 999 029 per year for CA-125 tests alone and $16 194 647 per year with CT scans added." 

The Guidelines:
Why has the use of CA-125 and CT not change since 2009? Maybe a reduction was not seen because of what is written in the NCCN Guideline for Ovarian Cancer released in 2015.
The NCCN Guideline for Ovarian Cancer recommends follow up tests every 2-4 months for 2 years then every 3-6 months for 3 years then once a year after 5 years. The tests recommended are :
Physical and pelvic exam
CA-125 if initial results were high. 
CT, MRI , PET as needed
Chest X-ray as needed
Genetic counseling if not already done.

SGO Recommendations:
In 2011 the paper
Post-treatment surveillance and diagnosis of recurrence in women with gynecologic malignancies: Society of Gynecologic Oncologists recommendations

These recommendations were made:
SGO lists  the CA-125  as optional for surveillance in previously diagnosed women.

They stated: "Until the ideal surveillance is determined, individualized patient plans that consist of a thorough assessment of symptoms and physical examination, which includes a pelvic examination,should be undertaken. The role for CA125 level monitoring should be discussed with patients. The pros and cons of imaging should be discussed with the patients who do not have an elevated CA125 level at the time of diagnosis.When a recurrence is suspected based on symptoms, examination, or CA125 level,a CT scan of the chest, abdomen, and pelvis should be obtained to determine the extent of the disease. PET scans are a useful adjunct when CT scans are indeterminate (Table 3)."

My Commentary: 

My recurrence on my liver and spleen in 2008 was picked up on a follow-up CT scan.  My CA-125 was 17 up from 13. I wasn't worried about a recurrence at the time because my CA-125 was still normal but there it was. I'm thankful that the CT scan was done so that one of my treatment options could be surgery then chemo. My CT showed only 2 distinct lesions so I chose to have surgery first.

When the 2009 study came out, I told my gyn onc that I no longer wanted to have the CA-125 test done.  We agreed that I would not begin treatment for a recurrence unless I had symptoms or something showed up on a CT scan but I continued to have the CA-125 test.

Based on my personal experience when CA-125 goes up even a little bit I get anxious and think recurrence.  I agree and understand that chemotherapy treatment should not begin on a rising CA-125 alone. But what about the fear and anxiety that a women feels during the watch and wait period?

I also know that radiation from multiple CT scans raises my risk for other cancers.  But right now there is no other way ( unless I use an MRI or PET) to determine if I am having a recurrence. With data showing the rate of recurrence in ovarian cancer is very high, what is a woman to do? 

Based on the SGO and NCCN guidelines a  personalized approach to determining surveillance is what is needed until as the SGO paper stated "the ideal surveillance is determined"

Every Day is a Blessing!

Monday, August 22, 2016

NJ Ovarian Cancer Awareness Month Events

September is National Ovarian Cancer Awareness month and Gynecologic Cancer Awareness Month. You can raise awareness and funds for research by taking part in one of these events held throughout the state of NJ. Organization's whose events are featured in this post include: Janice Lopez Ovarian Cancer Foundation, Kaleidoscope of Hope Ovarian Cancer Foundation, The NOCC New Jersey Chapter and The Teal Tea Foundation.

If you are organizing an  event in NJ please e-mail me and I will include your information in this post.

Every Day is a Blessing!

Janice Lopez Ovarian Cancer Foundation 
Sunday Sept. 25,2016

3rd Annual Concert for a Cure - The Encore Orchestra of NJ

Purchase tickets online at


Kaleidoscope of Hope Ovarian Cancer Foundation Events:

Sunday, Sept. 18, 2016 - The Gail MacNeil Morristown Walk
Loantaka Brook Reservation, 468 South St. Entrance, Morristown, NJ
Saturday, Sept. 24, 2016Avon Walk
On the Boardwalk at 600 Ocean Avenue, Avon-by-the-Sea, NJ
Sorry, no dogs allowed - Special Passing The Torch presentation  (see below)

Sunday, Sept. 25, 2016 - The Diane Castle Lyndhurst Walk -
Richard W. DeKorte Park,  Valleybrook Ave., Lyndhurst, NJ
Sorry, no dogs allowed

Online registration :

National Ovarian Cancer Coalition-NJ Chapter Events:

Wednesday, Sept. 7, 2016
Sky Blue FC / NOCC Night
Buy tickets on this website:
(CASE SENSITIVE) password: skybluenocc

 Friday, Sept. 9, 2016 

 Sunday, Sept. 25, 2016
Mayor's 5K Run/Walk 


Teal Tea Foundation 

Sunday Sept. 18, 2016 

Color Me Teal Run/Walk 

Wednesday, August 10, 2016

Neoadjuvant Chemotherapy Guideline for Advanced Ovarian Cancer

I was privileged to represent women diagnosed with ovarian cancer as the patient representative/advocate on the the joint SGO / ASCO guideline panel  that developed the recently released:

Neoadjuvant Chemotherapy for Newly Diagnosed, Advanced Ovarian Cancer: Society of Gynecologic Oncology and American Society of Clinical Oncology Clinical Practice Guideline

It was a process that took over a year, a few meetings (in-person and online), and many e-mails. During the entire time I felt that the "patient voice" was an integral part of the process. 

Thank you ASCO, SGO and Drs Alexi Wright and Mitchell Edelson, Guideline Chairs,  and the entire panel for giving me this opportunity. 

Every Day is a Blessing