My cancer isn't following the rules

Just got back from my gyn/onc appt a UW. The best part of the day was getting to see Ellen (Margaret 321) again and having a good hour talk waiting for the doctor. I wish you all could meet this charming lady.

My CA125 is up again. It was 21 in March and now is 37. (Was 66 last Nov and 32 in Jan). My charming gyn/onc thinks my marker (CA125) is just not a good indicator for me to monitor for recurrance. He said to me, "matter of fact, everything from your surgery reports to your last 3 years haven't been by the book." "You sure are unique." I told him I would prefer to be unique in other ways---not cancer. He decided we need to watch my cancer by CT scans and since it will be 1 year next Oct since my last one, I wiil get a CT scan in Oct and then see him again.

He then did his famous 2 fisted pelvic exam while we discussed ONCA and Barrack Obamma. So it is the wait and see game which I have much experience.

For those who may not know/remember my history:
I had DVT and multiple PE which led to a CT scan which led to a TV US and CA125 and a gyn/onc consult. Surgery was 8/02. They found cancer in my right ovary and my left fallopian tube. Both sites were "filled" with cancer. The tumor board couldn't determine which was the primary site. My gyn/onc suspects I have primary fallopian tube cancer but can't be sure. So my medical record reads "Serous Epithelial Cancer Bilateral Adenexa Primary Ovarian vs Primary Fallopian Stage 2A Grade 3". I usually refer to my self as an ovarian ca survivor. It is just easier to explain.

I have come to understand that this world of cancer we live in is very complex. The more I know, the more I don't know.

Have a nice weekend everyone.

Cindy

Oh Cindy!
I'm sorry your ca-125 is up. The waiting game...ick. Can I ask you a question? LOL, if I type the question, and you say "no, you can't"....well then I guess I didnt' wait for your response, did I?
Anyway, if your CA-125 is up, and the doctor is not sure if this is a good indicator for you....why is he waiting til October to do a repeat scan? I guess this is along the lines of waiting to see if there is an upward trend in ca-125...which they will undoubtedly repeat in October as well?

BTW...I love your uniqueness.
Hang in there,
xoxoxo
K9

Charming? Gee, I never thought of myself as charming! That's neat! But it was a good visit. I know you had that rising CA125 before and adhesions but no cancer. I know you have a gyn/onc who knows your history well. In October I'm betting that the CA125 is pretty stable and that the CT shows nothing going on. You have a jumpy one-maybe some new adhesions, etc. I'm betting you'll get a good report in October.

K9
My gyn/onc explained that he would be concerned if the CA125 jumped to the 80's and he said that if it was over 100 then that would indicate a recurrance. Since mine was only 105 at the time of surgery, and I had a negative pelvic exam and no symptoms, he feels it is safe to retest in Oct and do a CT then. He said even if it is a recurrance, it needs to be big enough (with enough blood supply) to treat with chemo.

I hope this answers your question.
Cindy

Cindy -

Your CA-125 doesn't show much of a pattern at all. I would have to agree - a roller coaster ride of this is not my idea of "fun" interesting.

Really, enjoy the rest of the Summer



Dorrie

Thanks for your explanation, Cindy.
I understand why your doc wants to wait.
Wish I could go and make this unknowness(yeah...a k9 original) go away!

XOXOX
K9

s Cindy

Darn that ca 125. It is so less complicated when it is a good tumor marker. But I agree, yours probably is not!
I am sure Ellen is charming and I would love to meet her. I did meet your gyn onc last year at the OCNA conference and he was handsome as well as charming and really had your best interest at heart Cindy.
You are certainly in good hands.
I am looking forward to catching up with you in Atlanta.
It will be here in a flash.
oxoxox karenann

It seems we live by numbers ... my chemo doctor no longer goes by my CA number. I've had normal numbers since the surgery in Jan 2004 and because of that my oncologist never thought I had a recurrence every time I complained (or "whined" as he called it) of pains and not feeling well. Even manual tummy exams are useless, I remember my oncologist telling me that women would "kill to have a flat tummy like mine" -well, the MRI showed I had fluids in that flat tummy -I doubt women would want that! PET, CT, or MRI's are now what I will demand regularly.

It's great that you got to meet Ellen....of course you're charming Ellen! I've made all these little caricatures in my mind of everyone here -it would be fun to see how close to real they'd be!

s and strength to you.

Cindy...

Darn, darn, darn!!! I sure hope it's not a recurrance. You know us Fallopian Tube CA women, though...our CA-125's don't get that high. My highest was 193, and that was with a orange sized tumor and other "sprinklings".

I'm ing hard that this is not a recurrance.

S to my FTCA Sister Survivor,

I can relate to the title of this post "My cancer isn't follwoing the rules". Mine isn't either! I have a Grade 1 tumor (ovca). My GYN oncologist said I had a low chance of recurrence. But I had a recurrence 6 mos. after finishing chemo.

I hope your CT scan is fine.

Best wishes,
Stephanie in Orlando