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:
NCCN
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. 
CBC
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)."

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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"


Dee 
Every Day is a Blessing!

Another Six Months

Yesterday was my routine follow-up exam appointment with my Gynecologic Oncologist.  I had not seen my doctor in six months so it was nice to catch up on things.  First up were the non-medical questions beginning with "So where are the pictures of those grandbabies? Then she asked about my son's upcoming wedding, where my daughter and her family are living now and lastly about my advocacy work. By asking those questions about me first she has over the years gotten to know me as Dee not just some woman with Stage 3 serous epithelial ovarian cancer. She has been "patient-centered" for as long as I have known her.

When we got down to the business of how I was doing medically, the first thing on the agenda was my CA-125. I have posted here about the up tick in my CA-125 result recently and how the method to determine CA-125 was changed at the lab where I have my blood work done.  We discussed how though my recent numbers were higher than with the other test method, they where stable ( 21, 20 U/ML) and she was comfortable with those results. 

We then turned to discussing the results of my recent CT scan. She turned to me with a big smile on her face and said - all clear. I had read the results two days after the scan on my patient portal but it was still great to hear her say it. 

The internal exam, not my favorite part of the apointment,  ended with "You're good". Hurrah! So while there was some concern that there was a different cause for my rising CA-125 it appears that based on the clear scan and exam , the method change is the true cause of the bump up.

With so many exciting things happening in the next month or two I am happy that I can put my recurrence worries back on the shelf for 6 more months.


Dee
Every Day is a blessing!