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Unread 12-13-2001, 12:34 PM
New to group

Hello all,

This July, my mom had a TAH/BSO for stage 3 ovarian cancer (she's also had a history of breast cancer). Her gyn onc suggested I get a CA 125 and sonogram. Low and behold, my CA 125 was 120 in early November, and has risen to 180!

I've been scanned this way and that (CT, MRI and PET) and other than what appear to be some functional cysts, and what appears to be a fibroid, we can't find any reason for the elevation. My oncologist is scared and thinks this is too high and going up is no good. The fear is that there is a small cancer or precancerous condition that is causing the CA125 elevation but is not yet visible on the various scans.

We're now monitoring my CA125 every week, and should it stay up or go higher, I'll be joining you all with my own TAH/BSO in January.

I'm seeking a second opinion, but any advice would be most welcome.

Happy holidays to all.
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Unread 12-13-2001, 12:48 PM
New to group

Hi Dorrie,
Its good to hear you are seeking a second opinon. I personally am not tracked with the CA125 marker, but several of the ladies here are and will be along to share their experience with you I am sure.

I am curious if they have checked your blood for anything else out of the norm there? With me I am tracked with the LDH and Beta proteins, which in my case were elevated in the thousands, and are now in normal ranges. So there are many ways they can track various strains of this cancer.

I will keep you in my prayers that this is elevated for something else, ( as I hear it can be), and that you will not require this surgery at all. I hope your mom is doing well Dorrie!! Keeping her in my prayers as well!
Keep us posted on your second opinion results!!
Holiday hugs!
Unread 12-13-2001, 12:58 PM
New to group

HI Dorrie, welcome to hystersisters Sorry, but I dont know much at all about the CA125 but like Maria says there are a few ladies who do and I am sure they will be along soon to help. Please remember whenever you need us we are here . lots of hugs x x
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Unread 12-13-2001, 05:07 PM
New to group

The CA125 COULD be elevated by the fibroids, or the cysts, either one. It depends on what part of your cycle, as well as other factors, what happens with the CA 125. My suggestion would be to get that second opinion, keep testing, and see what happens.

You did not tell us your age. THAT alone may make a difference in how you feel about the hysterectomy. At 45 I was glad of mine, and have not regretted it once in the 13 months since it was done. Even if I had NOT had cancer. I certainly do not miss the mess and fuss of my cycle.

Unread 12-13-2001, 06:11 PM
New to group

Hi Dorrie
I guess you need to take into consideration your age and what fertility
means to you at this point in time. I was diagnosed with Stage III
ovarian cancer this past spring. My three sisters were advised to have
CA125's and vaginal ultra sounds done. My youngest sister, age 39.
had a CA125 come back in the low 40's. The gyn oncology surgeon she
saw advised her to retest in three months. If there is another elevation
in the CA125 she is set to proceed with a total hysterectomy. To her, the
organs are just not worth the constant worry. She has three young
children and wants to minimize her risk as much as possible. Even
though after the surgery, ovarian cancer has been known to rear it's
ugly head as a primary peritoneal cancer, the per cent is very low.
I am glad to hear you are staying on top of the situation. Let us know
what you decide. oxooxoxkarenann
Unread 12-14-2001, 05:04 AM
New to group

Hi Dorrie! I wanted to welcome you to the site and say that I hope you feel at home here. As you can already see, the ladies here are great and we all join in together to give support and share experiences. We have a wonderful group here and I'm glad that you found us. Best of luck on the CA125 reading and hopefully the doctors will find out why it is elevated. I have to agree that a second opinion is never a bad thing. It will ease your mind and you can never have too many doctors!
Unread 12-14-2001, 05:47 AM
New to group

Hello friends,

Thanks for the kind support. I am 43, with three kids (11, 7 and 2). Not interested in any more babies, so the surgery isn't that big a deal from a fertility perspective.

Yes both the docs (actually 3- 2 gyn onc specialists and my regular ob-gyn) say the cyst and fibroid can cause an elevation, but usually not so high and usually not continuing to increase so fast. And they are all concerned that my mom's cancer history (breast, ovarian, colon and lung - she's a 2 pack a day for 40+ year smoker - but that's another story) indicates we may have a genetic component to this.

So we're monitoring for the rest of the month, and I have surgery scheduled for the end of January. If the tests go down, we'll cancel or just do a lap.

BYW, my mom is doing great - she had her TAH/BSO with a huge incision in August and I do wish I had known of you all then. She's 75 and petrified of the internet, but I could have gotten a wealth of advice to help her hear.

I've already ordered my book, and if surgery's a go, I'm getting a hystersister night shirt and crown and wearing them post-op.

Love to you all

Unread 12-14-2001, 07:46 PM
New to group

Hi Dorrie,

I'd also like to welcome you to Hystersisters. I'm very glad you found us here and very glad to hear you're being monitored so closely.

I'm very sorry to hear about your mom's diagnosis but very glad to hear she's doing well. There are several of us here on the boards with ovarian cancer, all I'm happy to say are doing very well at beating this little monster.

I'm also one that is being monitored with the CA125, my Gyn/Oncologist told me the same thing regarding the levels but added at the same time that they don't rule out other conditions raising it even as high as 200 until pathology is performed. It sounds strange I know but he even said something as simple as a virus can elevate this test at times, not to mention cycle and ovulation, the list goes on. Helpful but frustrating information I know.

Please know we'll all be keeping both you and your mom in our prayers. Please let us know how the tests results come out and how you are doing.



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