Hello

TeddyandBears_Mom said:

Raised Levels

Hi Lily,

I am very new into the cancer world. Hysterectomy was done 6 weeks tomorrow and have had 2 chemo treatments. (One per Week.)

Prior to my surgery, my CA125 was only 21.5. That means it was within normal ranges even with my tumor in place.  My Oncologist did another test 4 weeks post surgery and it had jumped to 80. He said he wasn't concerned since my initial PET and CT scans, and the pathology post my surgery showed no spread.  My point being, the numbers can go up for many reasons and according to my doctor, this is a marker/tool only.

I don't know if this will help you with the answers you are seeking. But wanted to share what I have experienced so far.

Good luck and you have come to the right place for questions and support.

Cindi

ps: So far, weekly chemo treatments have had minimal impacts on me.  I don't know if they will get worse over time but I'll celebrate all of my good days. This is only day 2 post my 2nd treatment so time will tell as I go along.  My blood counts were slightly down after the first treatment. Hopefully they stay high enough to continue on this path.

it is always best to meet under more favorable circumstances. It sounds like you had a cyst but it is not clear to me if you had cancer or not. Were you diagnosed with uterine cancer? If so, what is your stage and grade? Mine is stage 3a, grade 3. So far I have no evidence of disease.

Warm Wishes,

Cathy

Lily_Anne said:

Stage 1C with grade 3 clear

Stage 1C Ovarian Cancer with grade 3 clear cell and grade 1 serous cells were identified in my cyst, so the hysterectomy was a precaution. I regret choosing to lose my cervix but can hardly request it's put back, but that does bug me even after three years. Considered a cancer patient and having mini meltdown. It's no evidence of disease but now am worried about next scan because of the big jump in a short space of time. My consultant is normally Mr Cool, so now he has freaked me out by putting me back with a specialist cancer nurse.

LA xx

I was Dx with Stage IIIC UPSC and an automatic Grade 3 in April of 2013.  Other opinions had Stage IVB due to difference of opinions related to the furthest met.  Either way my treatment plan wouldn't change.  I know the days until these visits are very stressful.  My view is I am always happy when they "pull in the troops" as that means I am getting the best possible care.  Over reactions are better than under reactions although it is very hard on us as patients.  For me CA125 has always bounced along, up and down and isn't a great indicator.  Hang tough and I am keeping you in my prayers.  Anne

I haven't had raised levels without a recurrence.  I just want to let you know that I had stage IVB UPSC five years ago, and at the time of diagnosis, my CA 125 was only 94.  So many people have much higher numbers with lesser stages of this cancer.  Mine had spread to both ovaries, the omentum, and the small intestine, so I don't know why my number was so low.  I do know that the CA 125 is sometimes a good indicator of cancer and sometimes not.   I was originally found to have a big polyp, which my GYN thought would be benign.  In fact, I'd previously had a benign one ten years before, which had been removed..  But I had a D&C and UPSC was found, so I was quickly referred to a GYN/Onc in another city.  He ordered a CT scan, which was definitely positive, so positive it scared me.  It described a "cake-like formation" in my omentum which sounded like layer upon layer of cancer.

You might want to get a CT scan done elsewhere as a double-check.  The CT's are only as good as the people who read them.  My sister, a nurse, once worked for a doctor who had a partner reading his mammograms.  The partner was a drunk and missed a woman's diagnosis of cancer.  He may not have even read the report.  By the time the cancer was found, it was too late for the woman.  I wouldn't want something like that happening to you with your CT scan results. 

On the other hand, sometimes other conditions in our bodies can skew the results of lab tests.  I'm not sure if that can happen with CA 125's or not.  Inflammation in the body can sometimes throw off results, so don't panic yet.  I think you are probably right in sensing that something is going on.  Trust your intuition and keep checking on it.