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Elevated CA125 Elevated CA125

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Unread 03-12-2004, 01:39 PM
Elevated CA125

Hi Debra,

Many of your symptoms, especially the stomach bloating, sounded like my complaints. It will two years in April, that I had a hyst. for ovarian cancer.

Hopefully your doctor will be able to figure everything out for you and if you are not satisified, get another opinion.

Your appointment will be here soon. In the meantime, enjoy the weekend.

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Unread 03-21-2004, 07:40 PM
Elevated CA125

Thank you ladies for your letters and words of wisdom and support!

I finally got in to see my gyn and showed him the ultrasound pix (which showed normal ovaries and 2 fibroids, the biggest one being 2cm). I expressed my concern over my mom having ovarian cancer and breast cancer, the fact that I just turned 50 and was taken off BC pills, the rise in my CA125 from 12 to 30 in the course of a year (I know this may or may not mean anything) and although my ultrasound looked good, I was still having low-grade abdominal pains, low back aches, weight gain, bloated stomach, etc. The doctor looked at me with great concern for my health and "sanity" and said, "I think it's time." Of course, I knew what he meant because all along this is what I wanted him to say.

So, ladies, it's a hysterectomy for me...soon...probably in a month. I know this does not completely eliminate the possibility of getting ovca, but it significantly decreases my risk. I guess that's all I can ask for.

I have 3 sisters, 2 of whom have chosen to have hysterectomies. I don't think the 3rd one has come in touch with the tormenting fear we all face in wondering "what if?"

Hopefully, no cancer will be found, but if it is my gyn has a gyn/oncol lined up to step in.

Well, ladies, thank you once again. I'm sure I'll have more concerns and worries as time goes on.......and, I know right where to come for answers!

My prayers and blessings to all------Beverly
Unread 03-22-2004, 02:36 PM
Elevated CA125

Sending wonderful wishes that all goes well.

My only advice is to make sure that an ocologist/gynocologist Does the surgery. They are the experts who know exactly what to look for.

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Unread 03-22-2004, 07:24 PM
Elevated CA125


It does sound like "it's time." I'm particularly concerned about the bloating and back pain, since I had both. I'm have that your TVU didn't reveal anything other than fibroids. That's wonderful news! I know you'll have a lot more peace of mind (and a big fat scar, thank you very much!) after your surgery.

I'm glad you've made a decision. That should help alleviate some worry. If something's hiding in there, they'll find it. But if nothing is, then . . . well, it's just one less thing that you'll have to worry about!

Many hugs!
Unread 03-23-2004, 10:21 AM
Elevated CA125

Okay - now I'm getting concerned.....I'll try to make this long story short.....

My PCP did CA125 blood test Jan 2003--the reading was 12. Jan 2004 the reading was 30. Have been having abdominal cramping and low back pain, have gained weight (probably just from not eating right, who knows??), maybe constipated & somewhat bloated. The PCP made a referral to the one gyn/oncol on my ins plan. He's with MDAnderson. Before the gyn/oncol would see me his ofc requires that records first be faxed to their ofc, so the lab rpts were sent. Next thing I know, the gyn/oncol office called to say the gyn/oncol declined the referral !?!?! Has anyone ever heard of such a thing????

I held off on calling their ofc about this beacuse I was due for a scheduled TVU the following week and wanted results first. Ovaries were normal, everything was normal, except for 2 fibroids (relatively small ones).

The following week I was scheduled for appt with my regular gyn. I told him about my abdominal and low back aches, etc. He did an internal and said everything appeared normal. He said that considering my mom's breast cancer and ovarian cancer, which she died from, and my symptoms and my fears, that it was probably time for a hysterectomy. I was so glad he felt this way because this is what I wanted all along.

Knowing I was going to have a hysterectomy I never even told him about the gyn/oncol declining to see me. But I did ask by reg gyn "what if you suspect cancer when I'm on the operating table?" He said he calls in so-and-so good gyn/oncol. I told him there is only one gyn/oncol on my ins plan and dr so-and-so isn't. So, he said "not a problem, I would just call the gyn/oncol on your ins plan." I thought this was turning out just fine after all. . .

When I discussed setting a surgery date with the scheduling nurse I asked her what plans does she make for assuring that the gyn/oncol is "on call" should cancer be suspected when I'm on the table. She said she doesn't. I explained the whole situation to her and she said "well, I guess the (reg) gyn takes care of that...I don't know....NOW THIS IS WHAT CONCERNED ME....one would think that if a date is being scheduled that it would need to be coordinated with the gyn/oncol to assure his availability. What do you think about all this??? Am I just getting paranoid now? I'm all up in arms about this.

In the middle of writing this long scenario that was supposed to be short, the scheduling nurse called me back. I told her point blank what my concern was and I wanted to know how this is taken care of. She said she would ask the (reg) gyn and call me back.

Sorry this is so long.....can anyone help me? Has anyone gone through something like this before? Any comments would help greatly!

I'll keep you posted about what the scheduling nurse reports back to me.
Unread 03-23-2004, 10:59 AM
Elevated CA125

Oh, the dreaded on-call run around ---

The gyn onc may have declined you case because there is no evidence of cancer at the moment. Your ca-125 is within normal bounds and your ovaries look normal - I assume you've had an ultrasound?

I hate this on call nonsense and you need to find out exactly what it means. If it means gyn calls to gyn onc who isn't even in the hospital at the time forgetaboutit! At some hospitals, labelled as "community cancer centers" it means on certain days, perhaps once or twice a month, a gyn onc circulated among surgeries done by several regular gyns. My gyn does her hysts for low grade/stage cervical cancer and endometrial cancer on those days, but doesn't touch ovca at all.

Of course, the only way that this will make a difference is if they do pathology while you are in the OR, so that if g-d forbid cancer is found, the gyn onc would take over and do a TAH with complete staging.

Chances are, everthing will be fine, but you are owed an explanation on exactly what preparations are being made, given that it seems you wouldn't be having the surgery at all if cancer wasn't the issue

Unread 03-23-2004, 12:30 PM
Elevated CA125

I get so aggraviated when I hear of these dr and nurses putting women off, especially when it comes to cancer. I guess I was just lucky. My gyn orginally set my surgery for 1-14 w/gyn/onc assisting until all the test results were in, she refused to do the surgery and sent me to a university hospital with one of the best specialist on ovarian cancer. His treatment of me so far has been fantastic, he has the ability to make you feel safe even when he is telling you something you may not want to hear. But he does not pull punches with you either, its just the way he says it. I guess he just has that special gift, and I'm lucky to live where I live.
I would also like to know how many of these dr's gyn/onc take on chariety cases. There are just too many women being refused by their insurance companies or they cannot afford insurance at all. I did not have insurance until six months ago, and last year when I first thought something was wrong I actually had a dr tell me she would do tests but I had no insurance, I was not diagnosied until December (10 months later)with possible ovarian cancer, because I was afraid of being re-ject by another dr. I thank God everyday that it was only borderline and no futher treatment necessary, but I also think if the first dr. was different maybe it would have only been begin.

Good luck, and best wishes



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