My Ovacome

Clear cell stage 1c

I am very concerned and stressed. I went through chemo after have stage 1c clear cell diagonosed September 2010. My CA125 did not decrease during chemo. It went 19, 17, 19, 26, 27, 35, 23, 27, and now 3 months on from chemo is at 32. I am petrifiied. I have had a MRI following reporting pelvic pain to my oncologist. It was clear. He said not to worry and maybe my ca125 was naturally high. This has not elevated my fears. The pain is still there.but I was so releived that the scan was clear I did not ask many questions. I can hardly function I am so frightened as I understand if it does reoccur very little can be done to stop clear cell spreading rapidly.

1 Reply

I stood in your shoes last September also and like you felt petrified.


The right knowledge gives us power and some control back over what is happening to us. Yes Clear cell isnt the best diagnosis and is a very little understood subtype of this disease, even by Oncologists. There is a website called Libbys Hope that contains lots of helpful info about Clear Cell but beware of looking at all types of sites> I did this initially and realised a lot of the info out there is out of date and also not monitored in any way so inaccurate. Only look at reputable sites. And remember! there are lots of early stage Clear cell women who have not recurred and got great busy lives.

Its hard to think straight and clearly when terror takes a grip but be your own advocate, you will calm down from this if you get proactive. Ask your Onc if a PET scan would help in making the picture clearer for them. Also ask for copies of all your results on paper for future revue. You are entitled to them. I found something significant on mine which I had to ask about re my bloods. The pelvic pain can be all manner of things but its natural we all think the worst. Also my understanding is that the CA marker is not always a good one for Clear Cell.You might want to check that with your Onc otherwise you will be paying too much attention to the numbers and being more frightened over that than you should be. I thought the normal range of CA125 was anything up to 35 anyway but you can check this out and other ladies may post with better knowledge of that.

What follow up now are you having/ how regular?

There is a lot of help and support on this site, you are not alone so keep us posted how you are

all very best



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