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At what ca 125 level is cancer diagnosed? At what ca 125 level is cancer diagnosed?

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  #1  
Unread 08-02-2008, 08:32 PM
At what ca 125 level is cancer diagnosed?

Hello,
I am 47 yrs. young, married and have 2 children and 1 dog. I am alright with having a TVH/BSO. DaVinci style not so much. I have had 2 TVUS, 1 Ct scan, 1 MRI, 1 CEA test and 1 ca 125 test that is slightly elevated at 67. The start of all these tests began July 3rd. I have been diagnosed with a dermoid cyst (4cm) and an endometrioma (6.6 cm adnexal mass). My Gyn stated she thinks it is Very Benign! She scheduled me with an appointment with her on 8-12-08 for test results and instead she has called me with the ca 125 test result and has scheduled me with a Gyn/Oncologist on Thursday 8-7-08 and wants me to have everything removed. Things are moving very rapidly. This Gyn/Onc does the Da Vinci Hysterectomy. I am not even sure what my questions should be. My head is spinning. I know I should take her advice and not to worry. But here I am anyway! She said that she would be worried about it being cancer if ca 125 were in the 1000's. She has also stated that if I were a relative of hers she would be advising the same things and would not wait more than 2 months. What should I expect from the GYN/ONC on my 1st visit there? Any and all comments welcome!!!
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  #2  
Unread 08-02-2008, 09:22 PM
At what ca 125 level is cancer diagnosed?

I'm sorry you are going through this. I just got my CIS diagnosis this week. I hope the Gyn/Onco is simply a second opinion for now. I go for my second opinion with the Gyno/Onco Wednesday.

Google "questions to ask before a hysterectomy" there are tons out there and then write down the ones that apply to your situation to take with you. We keep our notebook by the bed and if we think of other questions we write them down.

Best of luck on your visit I hope it all turns out well!
  #3  
Unread 08-02-2008, 10:25 PM
At what ca 125 level is cancer diagnosed?

oh dear beinginthenow...as far as i know, there is no way to know for sure whether or not you have cancer until diagnosed by surgery. the ca125 is not always a good indicator unless you have other symptoms...you do have an adnexal mass; however, it could very well be benign. the ca125 could also be elevated if you have an infection or inflammation in your body. on the other hand, one could still have, for example, ovarian cancer and have a normal ca125 level...it is not an indicator for every individual...that won't be known until surgery.

one question to ask the gyn/onc is: what form of hysterectomy do you recommend? usually (and i'm not a medical expert) if cancer is suspected, then a vertical abdominal incision is recommended so the gyn/onc can have a good look around and perform appropriate biospies, etc. in my case, my omentum was removed (it was benign but is a common place for cancer to spread) as well 8" of bowel (bowel re-section) because my uterus was attached to my bowel via adhesions. the mass must be removed intact so as not to spill any cancer cells if any (it might be benign, so don't start worrying yet). also lymph nodes will be looked at and if necessary removed, plus a pelvic wash, and de-bulking if cancer is found.

there are so many unknowns until you have the surgery. many women have been worried about large masses and they've turned out benign. i would definitely research the type of surgery you will have...what's best for you. one thing you don't want is to have to have a second surgery because the appropriate procedures were not done the first time.

sorry you're going thru this and the waiting and wondering is stressful. take care and please let us know what happens.
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  #4  
Unread 08-03-2008, 06:42 AM
At what ca 125 level is cancer diagnosed?

I would not worry much about the slight elevation in the CA 125. While 'normal' is from 0-35, there are a lot of things that can make it rise that are not cancer related. Almost any kind of infection in your system could cause that. Plus, even the American Cancer Society hesitates to state that a rise in the CA-125 is a reliable marker for cancer.

When it is used, it is primarily a good test for ovarian cancer, and for some, but not all, uterine cancers. I am sure that once you have your visit with the gyn/onc you will be scheduled for additional testing and that may reveal more. Prior to my surgery I had a CT scan that did show some of what had already been found on an ultrasound. Once they performed the surgery (which was an abdominal incision) they found that not only was there cancer in the uterus, but in one ovary as well as some of the lymph nodes.

Start making a list a questions to ask the doctor and be sure that somebody else is with you. Two sets of ears are better than one.
  #5  
Unread 08-03-2008, 07:42 AM
At what ca 125 level is cancer diagnosed?

I am sorry you are going through all of this and it has to be very unnerving. Your gyn ihas been very thorough with the tests, etc; and it is excellent she is sending you to a gyn/onc; this is the doctor you want if even the slightest possiblity cancer could be there.
You may want to peruse the list of prehysterectomy articles on this site and can click here https://www.hystersisters.com/vb2/articlelist_170.htm,
article 37 specifically deals with questions for the pre-op appointment.
I hope you establish good rapport with your gyn/onc and he answers all your questions. As already noted, it really can help if someone can go with you. Pls keep us posted re how you are doing and remember someone seems to be here just about 24/7.
s
  #6  
Unread 08-03-2008, 07:35 PM
At what ca 125 level is cancer diagnosed?

Thank you all for being responding. It is a comfort just to have this site, but an even bigger blessing is the ladies like yourselves who take the time to respond to my questions. I will start using a single notebook to keep by my side at all times to write down questions and answers.
Peggiesue........great link. Thank you for including it.
davinci817.........I see you are from Louisville, Ky. I am also here in Louisville also. Have you had or are you going to have the Davinci surgery?
  #7  
Unread 08-03-2008, 08:45 PM
At what ca 125 level is cancer diagnosed?

I had the DaVinci surgery in November for endometrial cancer. I had some concerns about the effectiveness of the DaVinci surgery for cancer patients and my gyn-onc was very confident that he could do everything he needed to with that type of surgery and assured me that if he didn't think he could get a good look around he would switch to the more traditional method. The DaVinci surgery was all I needed. I was home from the hospital the next day and the recovery was much easier than from the TAH. It's still surgery and no walk in the park, but it is much less invasive.
  #8  
Unread 08-03-2008, 11:10 PM
At what ca 125 level is cancer diagnosed?

Hi beinginthenow
First off, as has been said, an elevated CA 125 does not necessarily mean cancer. It can be elevated for infections, endometriosis and other things. Also, one can have cancer with a low reading. It does not have to be 1000 or higher to be cancer. The usefulness of this blood test comes in following surgery, during treatment and to help determine the possibility of recurrence.

Now, it is good that your doctor is seeking a consult with a gyn/onc to be on the safe side. This doctor will be able to best determine how to proceed. Many times these types of tumors/masses are benign.

s
Jane
  #9  
Unread 08-04-2008, 06:58 AM
At what ca 125 level is cancer diagnosed?

Hello, there. Your situation sounds very, very similar to mine. I had similar tests that revealed highly encysted ovaries, and they couldn't rule out ovarian cancer because the CA 125 numbers were elevated. I also had problems with cervical precancer, so after several tries in treating the cervical issues, the ovarian complications brought a recommendation for a complete removal. My Johns Hopkins doctor, like yours, said if I were in his family, he'd be telling me to get the surgery. He repeated that a few times. It convinced me.

The decision you make should not be made post haste unless they have clear evidence. The last doctor who made the recommendation was, in my case, my third doctor (third opinion).

I really think it does no harm to get a second opinion or third opinion. This is very major surgery. In my case, I also decided it did no harm to be on the safe side. So I got the surgery. It was a DaVinci surgery, two years ago. Did they find the suspected cancers? No. Would I do it again if given the same warnings about probable cancer? Yes.

I'm glad you are having an oncologist in on the decision-making. Mine was a gyn onc (the second and third opinions came from oncologists).

You have come to the right place. Good wishes to you during this trying time.
  #10  
Unread 08-04-2008, 04:41 PM
At what ca 125 level is cancer diagnosed?

Hi Being! I am glad you found this site early on in your process. I will pray for you that there is no cancer found, but if that is not the case, the women on this site are a godsend and SO helpful.

I'm glad your gynecologist is sending you to a gynecologic oncologist. This is the BEST decision that could have been made as they truly are the experts!

I found it really helpful early on that someone went to all of my appointments with me. I typed up my questions, made copies for me and the doctor and just handed them to her and she answered very completely and elaborated where needed. I tell you, my brain just went NUMB when I first went to those appointments and I truly couldn't recall most of the conversations. That's why having someone there to take notes or just hear what took place is most helpful.

As the ladies said on this thread, you have a very good chance that this mass is benign and I will pray that is so. If it is cancer, again the treatments are doable and there really is life after a cancer diagnosis as many of us can tell you!

Good luck to you. Keep us posted and always feel free to vent or ask any questions!

Wish you the best!

Vicky
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