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Time to stop lurking and ask my questions Time to stop lurking and ask my questions

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Unread 07-16-2003, 12:34 AM
Time to stop lurking and ask my questions

Hi there!

I've visited here in this forum ever since my surgery, which was for presumed ovarian CA. There was a giant, complex cyst, and a CA-125 of 200. Now, I've written occasionally in these parts to say that elevated CA-125 is not automatically cancer, as many of you know. And my pathology report came back with no left ovary ever identified -- the presumption has been that it was "destroyed" by the endometrioma.

At six months, when I was feeling great (running 3 miles three days/week, etc.) my CA-125 was 9. Now, however, I'm having many of my previous symptoms recur, including early "fullness" when I eat, signs of bowel obstruction, looking pregnant (about 5 mos along ). And I'm feeling anemic again. I've had hemoglobins as low as 5.3 - 8 -- pre-op mine was 8. Right now it feels like a 9 or so.

Obviously I have to get things worked up, and I do have an appointment with the GYN on Friday. She and I have discussed the possibilities of both recurrent endo, and that not all ovarian tissue was removeable at the time of my original surgery (done by a nationally well-known GYN-oncologist).

Sooo...is it paranoid, or just cautious of me to have a mild case of "cancerhead" here? I was told prior to my hyst that I still had a chance of endometrial cancer thanks to the extensive (grade IV) endo -- the senior fellow said it was the worst case he'd ever seen in his 7 years of surgical training.

This could also be adhesions messing up my intestinal function -- my large intestine was "nicked" during emergency surgery years ago for an ectopic pregnancy in the cul-de-sac. I'm trying to not worry about this being cancer, but with a very strong family history (dad had both prostate and colon cancer) and my own rather checkered past , it's hard NOT to worry.

I've followed all your stories for the past few months, and I hope and that I'll be able to post with good news, eventually. But my intuition and clinical experience is telling me that this fear is honest, and real.

I hope you guys don't mind me sharing this with you -- but yes, I'm scared...

Thanks for putting up with this so far...and s in advance for any and all advice you guys can give me!

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Unread 07-16-2003, 02:13 AM
I'm so sorry

Hi there,

I'm so sorry to hear that you are going through this, my heart goes out to you. Please do keep us up to date with how things go and what the doc's say.

Bigs Hugs!
Unread 07-16-2003, 05:07 AM

I am so sorry that you are going thru this. It is quite normal to have a mild form of cancer head. I think coming as close as you did, would make anyone cancershy. I will hope and pray that it is not, but just make sure that you do what needs to be done.

Love and God Bless
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Unread 07-16-2003, 06:25 AM
Time to stop lurking and ask my questions

Sorry that you are going through this just when you seemed to be doing so well. You are doing the right thing to get it checked out. As far as being a cancerhead I think it is good to feel that way because it does get us to the dr , does tend to really stress us out though but if things are caught in time it makes it oh so much easier. You are in my prayers keep us posted
Unread 07-16-2003, 07:38 AM
Time to stop lurking and ask my questions


I am sorry you are going thru this. I would be scared too.
I hope you get good news at your check up
Unread 07-16-2003, 09:42 AM
Time to stop lurking and ask my questions

s Audrey

Yes, the fear is honest and real, but that still doesn't mean this all won't be some benign process. Because you spend time in the medical field and visit CC often, you are fully aware that ----
does happen to the best of us.

I am wondering why you are not going back to see the gyn onc that did your surgery?

Were you this bloated before the last surgery?

The problem with ovarian symptoms, and yes they certainly exist, is that they are still vague and indicative of so many other things.
So all one can do is exactly what you are doing.
Unfortunately, like you know, a surgical biopsy is the only true indicator for ovarian cancer.

It will be interesting to see what your gyn orders test wise.

I wish you had mentioned this last night during the chat.
I would have loved to have given you some live hugs.
Stay in touch. You are in my thoughts and prayers.

Unread 07-16-2003, 10:09 AM
Time to stop lurking and ask my questions

Dear Audrey,

Of course, you have some worry considering your medical history. I hope all goes well at your Friday appt.

By making it, you have empowered yourself. (By the way, thanks for empowering me yesterday, with that L.A. Times article on chemo brain).

I look at it this way - for me, it's better to know than not know, and once I knew that I had ovarian cancer, it was better to know all, than worry. Then, I can start to make the right decisions for me. (But, sometimes, I like to think of last year at this time, when I would have called myself a healthy woman - but, unknown to me then, I probably had had ovarian cancer for at least a couple of years at that point). What I am saying is while I might think that my ignorance was bliss then, it really wasn't.

Knowledge is Power, and then we can go ahead.

Big to you.

Unread 07-16-2003, 01:00 PM
Time to stop lurking and ask my questions

Dear Audrey,

As I said in my e-mail to you just a few minutes ago, you are right to go get things checked out. I guess I didn't realize that you were having so much bloat, but I am hoping that this is just the result of something else. I've cut a few things out of my diet that have reduced belly bloat immensely, much to my surprise. But when I eat, even green vegetables, I do notice that my belly juts out more than it did before. Perhaps due to lack of omentum? Or maybe perhaps due to the fact that I'm overly focused on my lower abdominal area?

I trust you can get in to see your doctor quickly. And if you don't like the answer you get from him, and continue to have suspicions, by all means -- get a second opinion! If I had ovaca around July of last year, the gynecologist missed it. The heart surgeon who did my appendectomy in January also missed it, despite the fact that he removed a lot of ascites during surgery. I was diagnosed by an internist in February. So, to my mind, it's helpful to get a couple of people to look at you.

Please let us know what you find out. In the meantime, I will keep you in my prayers.

Unread 07-16-2003, 02:35 PM
Time to stop lurking and ask my questions

Hi Audrey...

Lots of good wishes and thoughts are being sent your way. Hopefully this is nothing but I certainly know about the cancerhead all too well.

Siren, It is soo funny that you should mention about being over conscious of your stomach. We were discussing that in the chat last night because I am obsessed with it. I am constantly feeling my stomach to make sure that it is not hard and bloated. Soft and mushy is what I want. Guess that that is because a hard bloated stomach was my main symptom of ovarian cancer.

Audrey, please keep us up to date on any new happenings.

Unread 07-16-2003, 03:04 PM
Time to stop lurking and ask my questions

Cancerhead can occur with anyone. It is a natural process to worry until you have all the answers to your symptoms. If you don't get answers from your gyn, please follow Karenann's advice and consult a gyne/onc.

Good Luck & Here's hoping your symptoms are all benign.

Ruth S 's

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