Second Recurrence

[purfekt10]

I was originally diagnosed in December 2018 with stage 3 high-grade primary peritoneal carcinoma. It recurred in December 2022. I had the same chemo both times: carbo/taxol. It appears that I have another recurrence because my CA 125 was 8 this past November. Then, it rose to 22 in December and today it was 158. My oncologist wants to schedule a CT scan in March and I think that's too late. CA 125 tests have always been good indicators of my cancer. What would you do?

[SuffolkJen]

Hi purfekt10

Firstly I’m so sorry you find yourself in this position maybe for a second time.

I would definitely push for an earlier scan! I had a check up recently everything was good CA125 was 7.6 (it’s an indicator for me also) but I had a funny sensation in breast area that I was concerned about.

I had a scan within 8 days of check up - (it was all good thankfully), I wouldn’t have wanted to wait a couple of months for the scan especially with an elevated CA125.

Wishing you all the best xx Jen

[purfekt10 in reply to SuffolkJen]

Thank you for your advice.

[Hidden]

Your onc may be trying to ensure that the ct scan shows definitive progression before making a decision. Are you symptomatic? That would strengthen your case for bringing the scan forward.

[purfekt10 in reply to Hidden]

Thanks for your reply. I am having gastrointestinal issues just like I did the past two times. I had an MRI a 13 days ago, which was supposed to be with contrast, but four people tried to stick me seven times - all to no avail but I did have several blown veins. So, I ended up with just having an MRI without contrast. The radiologist confirmed two areas of concern, but couldn't make a definitive diagnosis since I didn't have contrast.

[Hidden]

Yes this is the issue with non definitive scans. I was once in a similar situation waiting for a follow up scan but my onc decided to proceed with chemo when my symptoms increased significantly, in combination with a rising ca125. The downside is that you won't have a true baseline scan to measure the effects of the chemo.

[NewtonEmma1900]

I too have HG stage 3c peritoneal diagnosed Autumn 2021 and I have had one recurrence. I have been in on Niraparib since Feb23 when ca125 was 7. It has been rising steadily for the past 8 months and is currently 124. My oncologist has arranged a scan but I know it may not give a definitive answer. On my 1st recurrence I had a PET scan and it did show spread to lymph nodes. This may be an option for you. Best Wishes 🙏

[Caleda4]

Sorry that you find yourself here. I am also hgsoc diag 2015. I have had 2 recurrences last treatment finished Aug.2022 Since then I have been on watch and wait I always have a PET scan now as I am allergic to contrast CA125 is normally a good indicator for me,but it has steadily risen to 354 in Dec.2023. However the PET scan showed that a lot of the cancer has shrunk, with just a couple of areas where it had increased slightly . A mystery really. My next scan will be March,so I am waiting in anticipation . A PET scan does show more of what is actually going on. I wish you well.x

[Saintgermain]

I'm going thru my 1st recurrence for Low Grade endometroid 3B on carbo/taxol/Keytruda like yourself CA125 is a good indicator me it shot from 15 to 500 at my 3 month checkup i'm in the states I had a CT /Petscan/Biopsy I would push for a scan sooner maybe another facility has an earlier opening ideally a Petscan I feel is the best. I had no other symptoms it was caught in the very early stages but I didn't have any symptoms when originally diagnosed just constipation.

[Leniko]

I made my Onco move up my CT Scan because I had a rise in CA125. That didn’t show much so I told him I want a PET, which did show an increase in my psoas muscle tumors (OVCA). Because of this, I will start immunotherapy sooner. Be your own advocate. The doctors have big caseloads, but there’s only one you.

[NewtonEmma1900]

Following the results from the PET scan in August 2022 which showed spread to lymph nodes and the left side of my chest ; my oncologist immediately arranged for me to go onto carbo/caelyx, this worked really well for me. That was when in Jan 2023 my CA125 was down at 7.

One year on with CA125 rising again but pending another scan, I see my oncologist in Feb to see what the next step might be. 🙏

[Dubai18]

Hi, So sorry to hear that. I would definitely take the scan to be sure. Then the team who look after you can make an informed decision of how to tackle whatever they find.

Hopefully they can make a plan for you if it is a recurrence.

Good luck and hope everything goes well for you. 🙏🏽 x

[Ruebacelle]

Get the scan. Your body your call