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Unread 05-30-2003, 04:12 PM
ca 125

I am 6 weeks post op and had a border line ovarian malignancy in both ovaries. My question is what if anything other than checkinging ca 125 is done at these regular post-surgery check-ups? I initiially had a ca 125 of 11. Consequently drs. assumed imy mass would be benign before my surgery. I'm sure in most cases ca 125 is reliable, but I was an exception. Do they do MRIs cat scans or biopsies.?
Also, this may sound foollish , but where does it recur when most everything has been removed? I have my appointment to discuss all this on June 17. So far I've been given no information regarding what my follow-ups will involve or how often they'll be. I'd just like some background so i can ask all the right questions. This site has been a great help to me.
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Unread 05-30-2003, 05:17 PM
ca 125

I've also wondered where it reoccurs once everything has been taken out. It seems as though there would just be cancer in the abdominal cavity and that it would be default just be considered the same cancer, even though it's not attached to an ovary. But I honestly don't know. Karen? Ellen?
Unread 05-30-2003, 05:53 PM
ca 125

s Harryson

I did not have a borderline tumor, also known as low malignant potential. But the Hopkins web site has lots of info. Here is that web site:

I believe there are a few posters on CC that share your diagnosis.
Perhaps they will be along. I don't believe that a ca 125 is ever a good marker for your type.

And for the question of where does ovarian cancer recur:
usually in the pelvis, abdomen and chest. In a variety of spots:
vagina (that's why those PAPs are still done of the vaginal cuff),
outside of the colon or small intestine, hence causing a blockage,
on the bladder, in the lymph nodes of the groin, then traveling upward: on the spleen or liver. It can also recur in the lungs.
And in very rare cases the brain. And yes, it would still be considered ovarian cancer.
These are all potential places where a mass may be found. But ovarian cancer many times is like a sprinkling of sand. It can recur without any mass being found.
This is a very general answer and not meant to frighten anyone.

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Unread 05-31-2003, 04:33 AM
Where does it recur

A friend of mine, diagnosed 11 years ago (Stage 3) recur on her neck - a small lump. It was really insignificant, and the Oncologist did not want to operate. The patient insisted, and it was cancer. After the operation she went for 4x chemo. She is doing fine. Another lady recur in her spleen. Take care, Jo
Unread 05-31-2003, 10:28 AM

Clearly, CA125 is not a marker for you. I have a friend whose recurrence was diagnosed after she became so ill she went to the ER--they'd seen things on a CT but her CA125 was 6, They will watch her with more exams and CT scans. Even when the ovaries, etc. are gone, the cancer can recur in many places. I've heard never in the bones and rarely does it go to the brain. Mine recurred with a spot (I suspect a "hot" lymph node) in the chest and a tumor along the diaphragm. Hers occurred as a mass on the vaginal cuff. It can come back on/in the liver, colon, spleen, stomach, lungs, etc. Another has had several lumps in her neck. can stay in remission too we have to remember! Ellen
Unread 05-31-2003, 11:30 AM
ca 125

I vote for continuous, uninterrupted remission! For everyone! :-)
Unread 05-31-2003, 08:12 PM
ca 125


I second that!!

Monday, June 9th I have appointments with my gynocologist/oncologist and oncologist and Cancerhead is starting to set in.

My husband does not understand why I am getting sooo nervous and it is hard for him to understand why.

Will let everyone know how the appointments go.

Unread 06-02-2003, 09:09 PM
ca 125

Hi Harryson!

I think the gals that share your diagnosis are monitored by CT Scan, at least I think I'm remembering that correctly.

Unfortunately, CA125 only works on cell types that raise the type of protein it measures. There have been a couple that are monitored by a beta test I believe.

I hope your appointment goes well and you get your questions answered. You might want to bring a friend or family member to help keep track of what is said.

Keep us posted on how it goes and I hope your healing is going well.


Unread 06-03-2003, 05:27 PM
borderline followup

Hi Harryson!

Hope your recuperation is going very well! Glad that you found cancer concerns, a place where somebody is bound to know the answers to all the questions that crop up - and boy, do they crop up! I, too, was diagnosed with borderline tumors almost two years ago.

My basic followup has consists of appointments every three/four months. I have a pelvic exam, pap and CA 125 each time. I also yearly CT scans and mammograms (no family history). I have had two colonscopies (family history) and will have one every other year or so. I am having a bone scan every couple of years. I do not take hormones although I did for the first year. I have complete blood work-ups every other appointment, checking all everything in addition to CA125.

When weird things crop up (such as unusual bruising or such) the docs tend to go into overdrive.

My thyroid has conked out on me since my surgery so now I am taking synthroid and trying to get that regulated.

For me, the first year after diagnosis was the worst. It was a numbing scary time, and I discovered there was such conflicting information on borderline tumors. I did send all my pathology to Dr. Kurman at Johns Hopkins for a second opinion which was reassuring when he concurred with the original diagnosis.

Please feel free to ask questions - that what hystersisters is all about! Take care.

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