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To J Mullen 16------Does CA125 test only confirm cancer returning to original location?

hopeful girl 1
Posts: 454
Joined: May 2010

Hi all.

Does the CA125 cancer marker test only indicate if cancer has reoccured in the original location? I thought often if cancer returns even to a different location that is usually originates from the first cancer.

That is a bit scarey if that is the case, that the CA125 test is only indicative of a return to the original area. Is this confirmed?

Also, what is the most common area it returns to? I have heard vagina is a common place as well.

I too had 3C, am 36, had surgery end of March 2010, three chemos, five weeks of radiation to include radation to additional areas that this cancer tends to return, and almost two weeks ago had my 4th chemo. I have 2 more scheduled chemos as I am on the sandwiched therapy. My CA125 test post surgery was 200, and after treatments to date (knock on wood) has dropped to 5.

I was fortunate that my surgeon was able to remove all of the cancer seen during surgery (and what showed on PET scan) including some lymph glands, however as well all know, this aggressive cancer can return.

However, I do think that with the way treatments have improved over the years, that the stats do not yet reflect these changes.

To J Mullen 16 I am so happy your partner is doing well and has passed the two year mark.

Thanks for the info.

lociee's picture
lociee
Posts: 102
Joined: Apr 2009

I don't know about CA125 and original type of cancer. I thought it would pick up cancer anywhere in your body. Your doctor would certainly know. But you should not worry about that now - you are still in treatment. If you have symptoms of reoccurance they will give you all kinds of scans to figure things out. They do not rely solely on the CA125 - it's just one of many things they look at. Treatment has become very creative and individualized. You're going to be fine. Many more people survive this then in the past - and many live productive lives for years with cancer.
Just keep going........ Mia

hopeful girl 1
Posts: 454
Joined: May 2010

Thank you for the positive words and encouragement.
Peace and healing to all!

Songflower's picture
Songflower
Posts: 631
Joined: Apr 2009

I had a recurrance in the peritoneum. This was not my original location. I think it can return anywere and then CA 125 goes up. It is not an accurate marker. Often it seems to me we get it down low but the cancer returns or is still there. It is helpful but I have decided it doesn't tell everything that is going on. They are working on new markers and I think Daisy has even had some of these markers drawn.

Bless you,

Diane

kansasgal's picture
kansasgal
Posts: 125
Joined: Aug 2009

My gyn/onc told me that the CA125 is not a reliable marker for all of his UPSC patients. Only some of his patients either with primary UPSC or recurrent UPSC have had an elevation of the CA125 level with active cancer. He also told me that recurrences of UPSC for women originally diagnosed either at stage 1 or stage 2 are more likely to be EXTRAPELVIC than to be vaginal/pelvic. The statistics that I've found agree with what he told me. Since I was diagnosed at stage 1, that has been my focus. The statistics may be different with original diagnosis at stage 3.

With that nice CA125 drop you have experienced, the CA125 marker may be a useful tool in your ongoing monitoring. Hope all goes well with you and you find yourself to be NED and remain that way!

Sally

jmullen16
Posts: 8
Joined: Jan 2009

You are an amazing person. Going through all this treatment is hell! Last month when Claire and I went in for her "physical" the doctor told us that the CA125 would only tell us IF the cancer has recurred in the adominal area. IF it has gone to the lung, brain, bone (disance) only a CAT scan would show that. Claire is haveing her post 2 year cat scan on October 4th. So, please pray for us.

I know it is scary the but further we get from the diagnosis the easier it gets. There are actually days we have now when we don't think about the cancer at all. some times I feel guilty about this since it consumed SO MUCH of our life.

But, life is for the liveing. That is what we are doing now. I try to enjoy the "cancer free" times and not think too much about what MIGHT happen.

Hope that helps. Feel free to e mail me if we can help more.

teach4kdz@aol.com or jmullenrp@oatheschools.com

hopeful girl 1
Posts: 454
Joined: May 2010

Thank you for your words of encouragement.

I am glad that you are embracing the "cancer free" times as you mention, and focusing less on what might happen.

It is the scariest experience ever.

Right now I am scared because after my 4th chemo, I have very low white counts.
Overall WBC is 1.4 (should be 4-10) and neutrophils are .8 (should be 2-7).
My medical team is so used to dealing with this, that they play it down, but
I know that you are very vulnerable to infection when counts are this low.
It has my spirits a bit down right now. I have been living rather hermit like because of it. I also read that when counts are that low skin infections and gastrointenstinal infections can happen as well. I am supposed to get my 5th chemo next week, but the neutrophils need to be at least 1.0 I am told. I wish they had to be higher than that, and they would give me an extra week or so to come back up. I am worried that if I have the 5th chemo at just 1.0 neutrophils, that two weeks after the 5th chemo I will drop to zero neutrophils.

Did you experience any low white counts or have any tips for me in that regard?

Thank you.

jmullen16
Posts: 8
Joined: Jan 2009

We received great news today that Claire's CAT scan was clear. Praise GOD! She was diagnosed with Stage 3C three years ago. In the beginning our Dr. told me many times that IF this cancer recures it is usually within the first 2-3 years AFTER treatment. She said 2 years for the longest time. Hopeful girl.. are you receiving internal radiation? I REALLY think we turned a corner. BUT, it is so hard to tell. I wish I knew the avearge time that recurrance occurs for stage 3C.

Hopefullgirl... Claire's treatment was odd. They first went in to remove the cancer. When they found it in the lymph nodes they sewed her back up and started radiation with light ceisplatin (spelling?) She then did 3 days of internal radation, she said this was the worst. They then went in to remove what was left of the tumor. The radiation had shrunk it from fist size to thumbnail. After doing a biopsey and knowing for sure it was uterine they then did 3 more months of intense chemo... adriomiosin (sp?) 4 treatments and then 2 treatements with something else because they were scared more adriomiosin (the red devil) would harm her heart.

BUT, she is hear 3 years later!

Does anyone know the mean time that 3C recurres IF it recurres?

hopeful girl 1
Posts: 454
Joined: May 2010

I believe what you indicated is what they say......this kind of cancer is most likely to grow back in the first two or three years or something like that. My oncologist said that the more time passes that it does not return, the higher your odds......The fact that she has not had a reoccurence in three years sounds like she is looking at some good odds!
They also say eating right and getting exercise also helps.

There are no guarantees of course-we all know that unfortunately.

I did not have internal radiation. I had 3C, with complete hysterectomy, and removal of the affected lymph nodes during surgery. I am having adjacent therapy-they refer to as sandwich therapy of taxol/carbo. 3 chemos every three weeks (as counts permit) followed by 25 external radiations, followed by 3 more chemos. I had my 5th chemo last week. My 5th chemo was delayed two weeks because my counts were too low to permit chemo. So I am alittle bit off schedule. My oncologist lowered the dosage alittle bit on the carbo for the 5th chemo because of the counts.

It sounds like Claire is doing great.

Peace and healing.

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