I finished chemotherapy on 24th June for first recurrence and had a scan in July, all came back good NED. I have been put on Niraparib.
I had an appointment with my consultant today (at Addenbrookes) and when I asked when my next scan is I was told they are not doing scans any more, they will be going off my ca125 readings and if I show any symptoms they would then scan. This has made me very anxious as the routine scans used to give me peace of mind, also my ca125 readings are not reliable as both times I’ve been diagnosed they were not very high.
Has anyone else been told this is the new practice .
Look forward to hearing from you
xxx
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Teazles
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I have had 2 Gyno/Onc's tell me the same thing so in the meantime one could drive themselves crazy with every ache and pain what I've been told is that they are concerned with the amount of radiation from a CT scan small growths are not easily picked a Pet Scan is more accurate. I finished front line in October, 2021, which revealed a large hernia which I had repaired recently during exercise (I think I overdid crunches) I've had some abdominal pain hoping its just the mesh moving around the Gyno/Onc wasn't concerned so I saw my GP she's ordered a CT Scan for me. My CA125 is a good marker in many cases its not. But long story short to answer your question yes that seems to be the new norm but you have every right to question and push for a test if your gut is telling you to.
Yes this is what my oncologist has told me all along that I can’t have a scan unless I have symptoms even though I had a rising ca125. I’m now just having my first recurrence and I got a scan when I started to get symptoms.Try not to worry about it, just make the most of being NED. How are you tolerating Niraparib?
Similar story here (I'm under the care of gynae/oncology in Leeds).
With my recurrence (I wasn't on PARPs after my initial treatment in 2015), my CA125 slowly started tracking upwards long before there was any radiological signs of a recurrence on CT scans.
Further surgery and chemo was done last year with a treatment completion scan in July 2021. I'm now on Rucaparib with monthly bloods but no plans for any routine scanning unless I have new symptoms. My oncologist did advise that they would look at the general trend of CA125 increases rather than the absolute values.
I've now got my head around the idea of not expecting a 'routine' scan but it did take me a while. I now take reasurrance from the fact that I'm now on PARPS, along with regular CA125 testing.
Be interested to hear which hospitals you are all at. I was told I would not be scanned even annually unless I had symptoms even though my CA125 was at 9. I started to push for a scan as my friend with same cancers at earlier stage than mine was being scanned every 3 months. In the end, less than a year after 1st cancer, I had symptoms and begged for a scan for a physical exam. I was right. Cancer had recurred. I think it's important that those of us who never had a raised CA125 to get screened in some other way. Good luck. xx
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Post chemo scans?
DD scans
Clear Cell Stage 1 follow-up process - no scan or abdominal examination. Anybody out there with similar experiences?
Update 😬
Feeling Confused... Again!!!!
