If you've had a recurrence (or two or three) can you please tell me what your symptoms were the second/third time around and how they differed from your initial diagnosis?
I've had to go off one of my PARPS (Lynparza) because of complications and I hate how every little thing is making me so crazy paranoid: every abdominal twinge, weird bathroom issue, fatigue, gurgling tummy, feeling of fullness...is is cancer? Or is it just everyday stuff? I don't even know if the symptoms would be the same the second time around.
I do get CA125 tests regularly every 3 weeks with the Avastin I'm still on, but the onc has asked me to just "watch for symptoms" to see whether or not another CT is necessary. Argh, this is crazy-making
I'd be very grateful to hear everyone else's experiences. Thank you!
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FlowerRose
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To be honest I think you should ask for a scan. Anxiety and mental health are also so hard on us.I I think if you insist how bad you feel you will likely get some reaction. I find waiting is the worst. Once you have the facts you are able to go forward and deal with them but not knowing it's horrible.
I had one reoccurrence about 4 years ago. My symptoms were feeling sick, swollen tummy and the clothes I normally wore became very tight. I had a feeling at this point that fluid was building up. I then contacted my 24 hour helpline and went into the oncology department .It was diagnosed very quickly and fluid was drawn off and chemo then started.
Symptoms of recurrence vary according to where the tumour spreads and what structures or organs it's affecting. It might be putting pressure on bladder, bowel, kidney, nerve (almost anywhere), so it's impossible to predict. My oncologist told me that any new symptom that persisted for two weeks should be checked out, otherwise not to worry.
I was asymptomatic for my early relapses but the last one was different. Untypical fatigue, pelvic discomfort like constant period pains esp low down that got worse over time, unusual sensations when urinating. Blood tests can also be an indicator, so best to have regular ones so that anything unusual will be picked up. In my experience, the docs work off at least two of scan or symptoms or bloods. My last chemo was started on the basis of symptoms and bloods. Though I had had a ct scan a couple of months before which suggested progression but was not definitive enough and was advised to wait.
Some people have no symptoms at all but a doubling of their CA125 leads to a scan. My symptom of recurrence was similar to my initial symptom. A nagging pain where my left ovary had been. That led to a scan. Ironically I have continued to feel twinges there for years now and they are just scar tissue. Some people get ascites which is hard to miss. I think the hardest thing is learning to live with this constant worry and not let it become an obsession. Time helps but for me it takes an effort. Xx
I’ve had a few reoccurrences, and the way they were found was through my CA, 125 levels. I am so glad I kept going for check ups even into my sixth year, even though many people said you can stop after five years. I’m glad I was vigilant.
I've had several recurrences. One time it felt like I needed my appendix out. Another time I had Ascites. I also got a recurrence after having COVID. COVID is really tough for our immune systems to fight cancer.
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