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causes of CA 125 going up, a little frightened

Posts: 5
Joined: Mar 2011

I'm new here and a little scared but was diagnosed in 11/09, had the hysterectomy and radiation. I have been out of chemo since April 2010, had a rise of the CA 125 from my level of 13 to 22, I also now have some lymphedema in my right leg. which was first thought to be left over neuropathy after chemo. I was due for a cat scan next month anyway so my Gyn/onc wants me to have that in a few weeks to see if there is any changes. Does the CA 125 go up with like gum disease or bladder infection?

Songflower's picture
Posts: 631
Joined: Apr 2009

I am sorry you have to deal with this. Our board is one thing to help you with all you must go through. 13 to 20 is not a big jump in CA 125. Infections and surgery can all cause it to go up. There is alot of literature out there on CA 125 some think it is not help for cancer. Others have found it helpful. It helped me to identify my recurrance. I think it also causes us alot of anxiety. I am in remission now (NED which means no evidence of disease). I am off chemo for a break even if my CA 125 goes up. I have asked my Doctor to only call me if there is a big problem with my CA 125 as I need a break from cancer and my daughter's wedding is coming up. I want to read, join my reading group again. I find it hard to do those things on chemo. I am also in a cancer rehab program and doing exercises to get my strength back.

I think at your stage I would watch it but remember it is still in normal range. Lymphedema can also be caused by removal of lymph glands and neuropathy too. I think you should do the tests they suggest. We are here to help you through them.


lindaprocopio's picture
Posts: 2022
Joined: Oct 2008

My lymphodema was never really bad, but during my first remission, not long after my radiation, my ankles and feet would get VERY puffy during hot weather, and I even had pelvic lymphodema swelling after a long flight to Greece during that same 1st remission. I was told by my oncologists and by a lymphodema specialist I went to, that not only the removal of lymph nodes can cause lymphodema, but so can radiation of them during pelvic rediation.

Now, although I have some cancer recurrence in my lymph nodes, any evidence of my lymphodema seems gone. Although I have made it a habit to always wear compression hose every day, even though I no longer get the swelling, I noticed last week when I was in Punta Cana that I had no swelling even though I did a lot of walking for long hours in my bare feet on the beach. (I did wear the compression trouser socks with dress pants in the evenings & also wore them during the flight there and back.)

I guess what I'm saying is, there is no reason to associate any lymphodema swelling with a cancer recurrence. As you see above, my lymphodema was evident during my remission, but is not evident now even though I am being treated for a recurrence.

And as far as your CA125 going up, you are still within the normal range. If you told us it jumped to over 100, or like mine to over 1000, I would be concerned for you. But a small rise like that still within the normal range is most likely nothing. My oncologiuist said CA125 can go up and down as much as 5 points on any given day! Please try not to worry. Have additional testing to relieve your mind, but don't worry for now. (((hugs)))

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