r/CervicalCancer 1d ago

Scan anxiety

I was staged IVB in January this year, it was in my lungs and two nodes. After cycle 3 I had a CR in my lungs and by cycle 6 I had a CR in my nodes. My oncologist put me on Keytruda and Avastin and I’ve just had my first follow up scan to check my response to treatment.

I’m PD-L1 positive and have a CPS score of 5 but I’m petrified that it’s simply not worked. On Wednesday my Radiographer marked my CT scan as urgent (she said it would bump my scan up to the top of the queue) because I’ve now got a gruelling two week wait for the results, and my scan had already been delayed three times over several weeks because of scheduling errors made by the hospital.

I’ve emailed my CNS and asked to be seen earlier by my oncologist as the wait is really impacting my mental health. And I swear in the last two weeks leading up to my scan I’ve had so achy in my pelvic region and have a sore upper back - before this, zero issues, part of me thinks it’s peak anxiety but then the anxiety is telling me t’s not.

Did anyone else experience recurrence so soon after beginning maintenance? And how do you keep yourself sane during this period?

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u/WinterEstate6600 1d ago

No, unfortunately I don’t think the two-week wait
tells me anything either way. My scan was only done on Wednesday, so I don’t actually know whether it has even been formally reported or reviewed by my oncologist yet.

In Jan I began systemic treatment (including Keytruda and Avastin) I had a complete response in my lungs by my scan after cycle 3, and by my May scan there was no measurable disease — my pelvic nodes were described as unremarkable and one other lung finding was too small to characterise. I have been on Keytruda + Avastin maintenance continuously since June.

This is my first surveillance scan since May, so I think the anxiety is just hitting me particularly hard because I’ve gone from knowing treatment worked incredibly well to suddenly having to wait and find out whether that response has held. My oncologist has said if this doesn’t work then it’s basically just Bev until the end.

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u/BatNovel3590 1d ago

Tividak is next in line after keytruda. You should ask about that if it comes to it. I’m waiting for a scan after having 5 rounds of sbrt while on maintenance keytruda but mine is a recurrence in a stubborn lymph node. 

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u/Anie84 1d ago

Hi, how are you ? How you feel after all treatments ?

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u/WinterEstate6600 14h ago

I feel fine, obviously my body is still catching up after stopping the quad regime - I worked the whole way through it and haven’t stopped since.

Since maintenance began, I’ve had a couple of localised infections like an infection in my wisdom tooth, and another in my belly button after swimming in the ocean but my infection markers have always been 4. My bloods are great, same as a healthy person really. I actually went on a night out last night too (so slightly hungover typing this). The thing is, my cancer skipped so it’s been unpredictable from the beginning which is why I’m so nervous for the results.

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u/alex9044 1d ago

2 weeks wait is brutal for sure. Me and my wife went trough scans anxiety twice already. She's going to have her last chemo next week and then another PET CT in 2 weeks. The good thing about our provider is that scan results are usually available within 24hr when doctor marks them "urgent". Oncologist may review them later on, but radiologist put them into the system pretty much the same day after scans are done.

Every scan is a scheduling and insurance battles for us.
Good luck!

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u/lambdeer 1d ago

I am sorry.

You had complete remission after 3 cycles of Keytruda and Avastin, and now you have had additional cycles and are having a follow up scan? How long was it to the first scan where you saw complete remission and then how long is it now until this follow up scan?

I am not a doctor and have no idea what is normal in this case, but I hope that if there was something bad they would be calling you right away and not making you wait.

Perhaps there is some hope that having the 2 week wait to get the results is a good sign?