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My Ovacome
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CA125 rising, clear ct scan

Hi, after 4 years in remission with ovarian cancer my CA125 has gone up from 19 to 39 in two month. Had a CTscan that left me bloated for days. Until the result of thr ct scan came back clear I mistook that for the return of the cancer!

What could it mean now the CA 125 has risen above 35 and yet nothing shows up?

cd25

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Hi love ,

There have been a number of posts about this in the last month and there can be a lot of explanations down to this other than cancer.

If you feel well and there are no symptoms, I would question your team to find out if they know the cause and get all the tests they recommend .

Obviously take any advice,but get on with your life if you feel well, if not, maybe get a second opinion?

Wish you all the best

Carole xxx

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Ps 4 years is all good! Xx

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Hi cd 25 if you had a recent scan I wouldnt worry too much and your 125 isnt very high really, if you are worried do ring the Ovacome Nurse Of course it is the norm to fear the worst at every scan and check up but we only end up upsetting ourselves needlessly most of the time. Take care and if you are really worried do ask your gp or ring the nurse

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Thanks

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Hi cd

Oncologists only go by scans and symptoms and they are the experts. In fact my oncologist doesn't put too much trust in CA125. I was forever arguing with my CNS about them not doing it. In fact when my GP did one and I gave my result of 17 to oncology the CNS she took the wind out of my sails by asking me if I realised that this blood test fluctuates ! I never knew that and I believe it's true. Your scan is clear and that's what really matters.

Enjoy your NED status. If I had my five years of remission back I would not have spent it worrying about my CA125 levels although I am one of those women who prefers to know .

Take care

XXX

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Think I would request a check again in a month. Mine charged up years ago, long before I was ill, on a routine check as I'm BRCA1. Panic stations of course with a whole barrage of test. Dropped back to 12 next check

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Hi CD......Just saw your post. My oncologist said that they look for 2 out of 3 indicators. 1....The CA125 level.....2....the ct scan, and 3.....the way you feel. He said that if you have 2 out of the 3, they would treat for a recurrence. My CA125 is rising, too. 54.4 last month. That was up from 35 the month prior. My ct scans have been fine, and I feel fine, too. It's so hard not to fixate on the number, or every little ache and pain, but we must just enjoy each day and at the same time being mindful of our bodies and what they might be trying to tell us. I'm back on monthly blood tests, so I'm keeping my fingers crossed! I wish you the very best........JudyV

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Thank you, I'll keep my fingers crossed for you

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The CA125 is not always correct. Mine reads negative, yet I am not curable, as they say in Oklahoma instead if terminal as i was told in Florida. Trust yourself and how you feel, don't over think it or stress because that is not good for your health. Enjoy yourself and those close to you, continue the tests and make sure you have a Doctor you like, and feel listens to you! Take care, and congrats on a good CT

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Thank you. Am quite bloated and a bit nauseous now and CA125 still rising.

Well,I have had 4 good years, that was already very lucky. How do you deal with your prognosis?

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Hi OC........There must be something about Florida! I live in southern NH. The hospital I go to here is affiliated with Massachusetts General. Many of our smaller hospitals are now affiliated with some of the Boston hospitals.

Anyway, this past winter when we were in Naples, FL, I was due for my ca125. It had been 6 in Nov.(in NH)... and in Feb in FL it was 54. I had a ct, and it showed some areas of concern. The Dr in FL was giving me treatment choices.....surgery, more chemo......I said, no thanks....I'm going home to see my Mass General Dr. Long story short, I had repeat blood tests here in NH....29 then down to 23, and another ct......negative! Go figure!

Now, my ca125 is trending up.....55, but I still feel fine and another ct was also negative. When I was first diagnosed in Sept.2014, I was at stage 4. They also told me that because of the stage it is not curable, but it is treatable. Terminal is not a word used with cancer in most cases now, as there are so many treatments. It's more of a chronic disease in this day and age.

It's amazing the different stories you get from different doctors and hospitals. I think that it's all up to God. I just do the best I can and trust in my doctors here.

I hope you continue to do well. All of the lovely ladies on this site are in my prayers every day!

Best to you and your family......JudyV

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