CA-125xiety !

Recently there have been a number of articles written about "scanxiety".
You may read one written by an ovarian cancer survivor here.  Another was posted on Medscape aand titled Cancer 'Scanxiety' Is a Real (Terrifying) Thing. You may read it here.

In response to a tweet about that Medscape article I tweeted:

#gyncsm Yes scanxiety is felt by many cancer patients. As is "CA125- xiety" https://t.co/fOLABfVnYg

— Dee Sparacio (@womenofteal) February 11, 2017

Well the past few days my CA-125xiety has kicked in.

This morning I went for the blood test so the results would be ready for my appointment with my gynecologic oncologist next week. Am I anxious? My brain says I shouldn't be nervous. I feel ok for the most part although I have been more fatigued recently. 

I've read many articles about screening using CA-125 and CT scans. One study reported last year in JAMA Oncology says, "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 get it. My CA-125 result was in the normal range up a few points when I recurred in 2008. I shouldn't worry, yet I do. 

It is a funny feeling and hard to describe to one who has never been in this type of situation.  I am merrily going along in my new normal and then a sense of dread comes over me. I get anxious about finding the time to get things done. I hesitate making plans a year or two out. I start to rethink what brings me joy. What should I not be doing right now? What should be at the top of my priority list? Spending more time with family and friends goes back to the top of my list if other commitments were heading to the top.  I go on a cleaning out spree. I get rid of things I won't need if I recur. I get upset with people who "Sweat the small stuff".

I am uneasy because I know, maybe too much, about ovarian cancer. It is a sneaky disease. I know women who have gone years and out of the blue have a recurrence. Sure I can eat healthy and exercise but there is no magic pill that I can take to prevent my cancer from returning. How I wish there was.

It is difficult to get over this feeling. I try all those things that have helped me cope with this sense of apprehension in the past but I am not always successful. I will feel much better when the myQuest app sends me a notification that my results are ready to view. Good or bad at least then I will know.

Until then I will just try to enjoy each day.

Dee
Every Day is a Blessing! 

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)."

54

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!