CA125 rising but PET scan clear

[Louise62]

Hello friends,

I am post surgery 14 months, post chemo over six months. On a clinical trial getting Olaparob, durvalumab and bevacizumab. CTs every three months have shown no evidence of disease. I had a PET scan a few weeks ago with NED. CA125 staying about an 8...until...Nov! My CA 125 has risen to 73. I am so concerned about recurrance but with scans being clear I don’t know what to think. Any thoughts? Thank you. Sonja

[Lyndy]

Hi SonjaThis sounds familiar to me. I had a rising ca125, at first they said they thought there might be something on the scan, then backed away from it. I was on watch and wait for more than 2 years without symptoms.

Eventually it became clear that it was back.

I think they find it much more difficult to say definitely whether or not the cancer has come back until you actually have symptoms.

The jury is still out for you, it could be hiding on the scan or it could be something else sending your blood marker up, nothing to do with cancer. Not an easy place to be!

I would ask your oncologist what their hunch is... but don’t forget to live your life and enjoy yourself right now...who knows what will happen in the future? We live with uncertainty but we still live xx

[Louise62 in reply to Lyndy]

Thank you for your reply Lyndy. Yes it is hard for all of us as we have to wait and wonder.

[Duskygem]

Hi Louise, I had rising ca125 while on avastin (post chemo/ debulking), ct scans were not showing anything. I then had a PET scan these detect cancers that ct scan maybe wouldn’t pick up, especially if they are small. Anyway my PET scan showed cancer in 4 areas of peritoneum.Maybe mention a PET scan to your onc.

All the best Louise

Duskygem

[Louise62 in reply to Duskygem]

Thank you Dusky. I did have a PET scan Dec. 28th, 2020 and t did not show anything. But my CA125 has risen from 8 to 73 since November 2020. I wish you all God’s blessings. Sonja

[RoseMS]

Hopefully Louise it’s nothing sinister, I had an MRI scan after a query raised by CT scan. The trial you are on seems to cover all bases in terms of maintenance therapies so hopefully no recurrence. Can I ask where you are based please? My best wishes to you at this worrying time.

[Louise62 in reply to RoseMS]

Thank you Rose. Your words are encouraging. I live in Tampa FL and receive my care at Moffitt Cancer Center here in Tampa.

[Summergold2]

wow I am having the same issue. Was at a 2 in August clear CT Scan then it started to rise. I am still on Avastin finished Chemo in April started new vaccine trial in September thats when my CA started to rise........ slowly at first then this Jan it jumped 12 points to 40. Had another CT SCAN in Jan which showed clear NED. My ONC wants to wait a couple of months and do a PET Scan so most likely in March. I have treatment this Jan 28 does anyone know of any questions I should ask? I do have another appointment with the oncologist who is conducting the trial . I am wondering if the vaccine (which was made from my tumor with my dendrites) if that could be causing false rising as well. I feel fine just get alittle tired and have very severe pain in shoulder joints but other than that healthy. Scared in San Diego

Debbie

[Louise62 in reply to Summergold2]

Debbie thank you for replying. Yes, it sounds like we are in the same boat. I’m sorry you have to wait for your PET scan. It’s hard. Please keep in touch. Scared in “Tampa”. Sonja