No choice :(

I wasn't sure if this was appropriate here or in cancer concerns, so I posted in both areas...I hope it's okay! I *have* to have a hysterectomy at the end of the month, even though I have cried, don't want to go thru it, dread it and wish I could avoid it. I have fibroids (one is quite large), an ovarian cyst and a CA 125 test was done that came back elevated at 82. I was told that since I am 45 and premeno, the test is not always that accurate, and the Dr does not *think* I have cancer, but can't be sure. I had the endo biopsy, normal, pap test, normal...I am just very, very scared...no ovarian or breast cancer in my family, *but* lost both my mom and dad to cancer, so I kind of feel I have no choice but to get it all out and see what's going on. <sigh> I am so depressed and so scared.

Hi Sweetie!! I just want to tell you to take some deep breaths and remember that whatever the outcome, you will have it taken care of in just a few days!! IF... and that is a HUGE IF....it turned out to be something scary, then they have gotten on top of it before it gets really bad!! You are doing exactly the right thing so be very proud of yourself for having the courage to do it!! I would like to pray for you right this second....Father, please, please pour your special peace that passes our ability to understand it over Donna and let her know that you are not just there, but are holding her in your arms of awesome love and going through anything she has to go through with her!!! Let her have good nights of rest and take the scary thoughts from her mind so that she can do the things she needs to. Thank you Lord for Donna and just let her feel you in a very special way.. Amen. God bless you!! Betsy

I'm so sorry you are having to have surgery. It can be a difficult thing to have to deal with, especially if the "C" word is mentioned. But sometimes it's better to be safe than sorry, and it's in your best interest to get it taken care of, so you can rest easy.

I didn't have the cancer concerns that you have, but I did have fibroids, excessive bleeding, adhesions, and a infarcted fibroid that twisted and broke off. I'm just 39, but by the time my doctor mentioned a hysterectomy as an option, I was more than ready for it. I was so anemic from the bleeding that I could barely function. So in my case, it was a most welcome solution to ongoing problems.

I can tell you that the waiting for this surgery is the worst part. Most of the time, with the weeks and months that this surgery is usually scheduled in advance, it gives you too much time to imagine the worst. But the reality of the procedure is so much easier than the imagination makes it out to be. It's normal to be afraid. Just don't let that fear control you.

My goes out to you. Please know that my thoughts and prayers are with you. We're here for you if you need us.

Best wishes and lots of s,

Lisa

Hi, Donna -

First, I want to send a hug!! I know how scary the possibility (and the reality) of cancer is. And it's ok to post anywhere :-)

I was in a very similar situation - 48 years old, with an ovarian mass that didn't look normal and was growing slightly over a year's time. Mom's sister and one of their first cousins both have ovarian cancer, and the cousin tested positive for the BRCA 1 gene. My Dr. also didn't "think" I had cancer - fortunately, he was right (about the ovarian cancer, anyway :-). My ovarian mass turned out to be benign, but I know your fear. Aside from the terror of the thought of cancer, the unknown eats at you, and you always imagine the worst. You are doing the right thing - get it OUT and either get the fear eased or know your enemy so you can fight it.

I can't tell you that you don't have cancer...or that you do - I wish I could ease that fear. One thing I CAN tell you is that, age and premeno aside (I've never heard that that influences CA125s, but that doesn't mean they don't) the CA125 is NOT a definitive test for cancer. It is used as a marker - to see where you are from one test to another. There are other things, like fibroids, that can cause an elevated CA125 level.

Will they have a gynecological oncologist standing by just in case? That was the plan for me (though he was called away just prior to my surgery, and it turned out I didn't need him anyway). When is your surgery?

If you need to talk to someone, please feel free to send me a private message.

Hang in there -

Cheers,

Hi Donna
I know what you are going though cuz i was in your shoes to but only my storie is a lil diffrent.
I went in to have a paps done cuz i havent had one in ten years (BAD BAD ME) and was called up about a week later to fine out that i had a bad paps. and that i have cancer in my cervixs. What a way to fine out over the phone. I then was told that i had Thur, Friday and Monday at the lastest to get in. I was thinking oh my i am going to die
So i went in that Thur for them to call me on the phone again to say Neg cancer but they want me to come in for another Biyopsy so i did Not really getting answers to any thing.
So i went in again said that i do have cancer but she wants to do another Biyopsy i said no way i want it out and told her i was done with haveing kids again her not listening so i moved on.
I went to my old Gyn and got all the lab work and they are so great i shouls have just went there in the frist place. they explain every lil detial to me and my DH and she listen to what i wanted done from there we set a date and i went in and had it done
I know what you are feeling right now and i am telling you this place is so good if ya ever need to talk you can e-mail me
Good luck and may god be with you


TAH /BSO June,21 due to cancer in the cervix

Dear Doona,
Sending extra hugs your way

The thought of cancer has to be very frightening. As someone else pointed out, an elevated CA125 test does not always mean you have cancer ... fibroids can cause an elevated level too.

Please keep reading and posting and we'll be here to support you any way we can. While a hyst is major surgery and not something any of us look forward to, the good news is that you can function quite well without a uterus and ovaries and this surgery can be life-saving if you do have cancer. The waiting is awful, we all know that but we're here for you! Keep us posted on how you are doing.

Beth

I have requested a CA-125 test severeal times, my doctors refused to do it. They said with my history of endo that it would be elevated anyways and they will do a pathology report on all that they take out (which is everything).

I will keep you in my prayers, just know that the CA-125 test (the way I understand it) is not reliable for diagnosing ovarian cancer, rather it is used after cancer has been detected to rate improvement or deterioration in women after chemo/radiation.

Hang in there!

Sending prayers up.

Donna, I have gone through this, too.

I had a little spotting 2 years post-menopause and went to my GYN just after Thanksgiving last year. Well, I ended up having tests done "stat" instead of doing my Christmas shopping.

The DR would not discuss the cancer issue, which made it seem even more menacing to me. I thought that all she could be doing was trying to protect me from the numbers. and I was in a panic, to say the least. I had so many risk factors and I did not know how to make sense of them.

The numbers don't mean alot, and when she finally talked about this at the pre-op appt. she said the same thing your DR has said to you. We did not expect cancer, but we could not tell until they saw the cyst and did the pathology tests.

She had an alternate plan if it was bad news and an gyn-oncologist on call for the surgery. That way, I knew there was a plan.

It was hard not knowing what kind of surgery I would wake up from.

My GYN was in a huge hurry and my surgery was done 4 days before Christmas. I was not allowed to put it off at all.

I can also say as uh Lisa Alisa said, "My ovarian mass turned out to be benign, but I know your fear. Aside from the terror of the thought of cancer, the unknown eats at you, and you always imagine the worst. You are doing the right thing - get it OUT and either get the fear eased or know your enemy so you can fight it." I also could have written that. ( maybe not so well...)

I am wondering why your DR is letting you wait til the end of the month. Did they say? The sooner, the better , I think. That way you can relax or deal with the problem, whichever is necessary. The waiting was so hard!

Your Dr has things available to help you deal with the anxiety and stress. Also, sleeplessness was a big problem for me pre-op. Don't hesitate to ask.

And, I am also here, ready to talk if you need to. Send me a PM and I will be glad to help in any way that I can.

I had to have a hyst too. I was diagnosed with uterine cancer. I was so upset because my husband and I wanted another child. I was more upset about the lose of future children than I was about the cancer. It's hard to have your choices taken away from you.
The good news is, even if it turns out you do have cancer, cancer is beatable. I just kept telling myself, "I may have cancer, but cancer doesn't have me."
And the surgery isn't that bad. Neither is the recovery. Well, the swelly belly is a major ordeal some days....but considering the alternative, I'll take my swelly belly and smile about it!

Donna!!!

Cheer up my friend......!! This board has helped me LOTS!!! MY own Total hyst is scheduled for Thursday July 18th, 2002. Yes I am scared, BUT this board and the wonderful ladies on here are such a God-Send!!!

I had a slightly elevated CA125 test as well....mine was 48.

Girl.....listen to me......I have done MASSIVE amounts of reading on the web and fibroids can cause a CA125 test to be elevated.

PLEASE LISTEN: Every single case study that I read on the web, the women had CA125 tests in the HUNDREDS!!!! One was 750!!! Another was 24,000!!!!!!! YES!!!! My thinking is that your CA125 is in the 80's because of your fibroids. I was VERY relieved when I heard my CA125 test was "only" 48!!!!

Hun....listen to me.......odds are you DON'T have cancer. I read on the web that OVER 50 percent of those tests are false positives!!!

Do yourself a favor and get on Yahoo and do a search for "CA125".......and read the case studies on there. It helped me LOTS!!!

HUGS!!!!! Keely