Looking for others who’s GynOnc doesn’t use CA125 for follow ups.

MamaLlama

Background: diagnosed with 3C HGSC. Optimal debulking then 6 rounds of Carbo/Taxol. BRAC1+

I am currently NED. My last chemo was Dec 23/21 with a PET & CT showing NED in January 2022. I saw my GynOnc in April for my first followup. She informed me that she relies on how the patient feels and does not do CA125 or scans unless the patient is exhibiting symptoms of recurrence. I just assumed that watching my CA125 levels is the normal standard of care. I’m really confused that I have to rely on how I feel. I’m at The Tom Baker Cancer Centre in Calgary, Alberta. Looking to chat with others that are not monitored with scans or blood test. 

Thanks. 

Love to all you teal sistas. 

Fearless

Hi @MamaLlama I agree the standards of care can be very confusing sometimes.  But yes, the standard, at least in Ontario,  is not to do the CA125 unless there appears to be symptoms that align to warning signs of cancer recurrence.  That was the process my own oncologist followed when I was discharged from primary treatment in 2017.  It wasn't until a year and half later that I started exhibiting possible signs of recurrence...ongoing changes in bowel habits.  At that point they did two CA's. The first to establish a new baseline and when it showed my CA having risen above normal range, a second about a month later (along with symptom tracking) to see if this was a trend. When the CA was higher still that prompted a physical exam and CT to confirm my cancer had reoccurred and for which a new treatment plan was established.  

Yes, some doctors will order the CA125 as part of ongoing maintenance.  Usually that's more to satisfy the emotional need of the patient though. I believe we'll be seeing less and less of that as costs tighten and doctors are discouraged from ordering tests that are not part of standard of practice....at least in Ontario where I live.   

Do remember the CA125 is not reliable.  It is prone to false positives and false negatives, the latter being the most dangerous as it can lull us into a sense of security and stop the active personal surveillance for symptoms. Your best line of defense to this disease will always be your sense of your own body against the list of possible signs of OVC and your own intuition.  If something changes in how you feel or your body reacts, and it persists, often worsening in frequency or intensity, it is time to notify your doctor even if out of normal 'check-in" cycle.

I hope that helps.

MamaLlama

Hi @Fearless - Vol Mod. Thank you so very much for taking the time to respond. I just assumed, which is never a good thing, that that is how I was being monitored. Then to find out I wasn’t, seemed to put me back in serious ‘fear mode’! My husband and I told ourselves that we are in good hands. We have to trust my care team. ♥️

Deletedbyrequest

I did not have the CA125 done on a regular basis for the first year after treatment. In the second year it was ordered every other time I went for lab work.. Now starting year three it has been consistently every 2 months.

Fearless

@MamaLlama
You said the most important thing in treatment of this disease....have trust in your cancer care team.  That's doesn't mean not to ask questions, or ask what other options there may be but overall, they are experts both in training and years of treating patients with OVC. The next most important thing is to know your body and ensure you raise any issues that arise that are not normal, are persistent, and likely increasing in intensity.  And don't wait until the next check up if you're worried.  The earlier your oncologist is aware you have developed symptoms that MAY indicate a recurrence, the earlier they can begin formal investigation. 

Don't get too caught up on the CA125. As I always note, it's not reliable and prone to false positives and negatives.  Standard of practice in most provinces (and do remember standards can differ province to province) is not to order the CA125 unless the patient is exhibiting symptoms that warrant investigation. Unlike a family practitioner who is not trained at any depth in OVC or has probably ever seen a single case, your oncologist is a specialist in the field so knows what to look for or what you're telling him/her that might signal the need to explore at more depth.  And your oncologist is also knowledgeable in interpreting the results of a CA125, much more than the average Family Practitioner.   I know my own oncologist has said many times that she would never order treatment based on a CA125 result. She uses it only as an indicator that further investigation may be warranted, and only when she sees concerning trends;  not on any single result. 

Let's face it, there is nothing that will 100% prevent a recurrence if one is going to happen, But like first diagnosis, early detection is critical to effective treatment and that comes with understanding the warning signs of OVC, knowing your body, and good communication between you and your oncology team. 

You'll likely never loose the fear of recurrence.  Few do.  But by arming yourself with knowledge and ensuring you do have regular check- ins, over time the fear will lessen.  And, of course, I do wish you continued success in your recovery.