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Cancer: Cervical & Ovarian Message Board
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Old 10-24-2009, 08:16 PM   #1
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Steps to Diagnosing Ovarian Cancer Your Experience?

I have had a CT with contrast which found a 4cm complex cyst, a vaginal doppler ultrasound that saw the cyst, a PET scan that showed moderate activity in the cyst and low activity in the para aortic lymph node, and I know my ca-125 is 100 and rising.

My question is what is the normal course for definitivly diagnosing cancer? Everyone says just get a full hysterectomy at 48 which I understand, but have any of you had a biopsy of the cyst or lymph node first? I'd hate to loose all my parts and then find out it was all benign.

Thoughts on your experieinces please!!! I am so confused!

Susanne
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Old 10-25-2009, 04:54 PM   #2
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Re: Steps to Diagnosing Ovarian Cancer Your Experience?

Susanne,

Have you seen a gynecological oncologist as of yet ? In light of your CA-125 results, this would be a good idea. The surgeon can go in with a laparoscopy and do a cyst or ovary removal and have the tissue tested. Then if the results are benign, no further action would be warranted. However, it is a good idea to have an gyn oncologist as opposed to a normal gyne. These professionals are more trained in doing this type of surgery and will be more careful during removal. They are also very good at seeing what is good and what isn't during the actual surgery.

A friend of mine was having horrible symptoms and after doing all of the scans you have mentioned, they went in with a lap in order to biopsy and, in her case, to take out all of the fluid build up in her abdomen. Unfortunately for her, they diagnosed her with primary peritoneal cancer (which is just like ovarian cancer and treated the same). At that point, they scheduled her for a complete hysterectomy. After the hyst and chemo, she has been cancer free for almost a year (touch wood).

On the other hand, my sister in law had a large complex cyst and a raised CA-125 and in her case, the surgeon went in fully expecting to have to remove everything. They removed her ovary and the cyst and much to her surprise, it was completely benign.

I therefore understand completely why you would not want to go all the way unless you have to. Depending on your surgeon, he or she may or may not be comfortable doing the ovary removal through a laparoscopy or a laparotomy. You will need to discuss the procedure with the actual surgeon. However, I would seriously consider using a gyne oncologist, just to be on the safe side.

I hope this helps. I sincerely hope you get good news very soon.

All the best,

Estria

 
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Old 10-25-2009, 07:41 PM   #3
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Re: Steps to Diagnosing Ovarian Cancer Your Experience?

Estria thanks for your message. Both my doctors are gyn oncologists. Did either your friend or sister have a PET scan? Just wondering if either showed uptake. Also, was your friend's ca-125 elevated for the peritoneal cancer?

Thank you for your help!
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Old 10-26-2009, 08:23 AM   #4
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Re: Steps to Diagnosing Ovarian Cancer Your Experience?

Hello,

Yes my friend with peritoneal cancer did have a PET scan but I believe this was after her laparoscopy with pathology. I think that the PET scan was used to stage her cancer after it was confirmed. Her CA-125 was around 200 when she was diagnosed and at present it is around 10. I do not believe that my sister in law had a PET scan because when the surgeon went in he was able to see that no cancer was present (and the pathology confirmed this). I do not know what her CA-125 was at the time but I know that this was of great concern to her as it was above the normal limit.

Unfortunately, the CA-125 is a lot like the men's PSA for prostate cancer. It can be elevated for reasons other than cancer. The CA-125 does seem to be more accurate in post menopausal women, however, and it is definitely a good tool to use when a woman has already been diagnosed with ovarian cancer and monitoring is needed.

What may be concerning for your doctors is that the CA-125 is rising. Have they mentioned anything to you about this ? Also, are you pre menopausal or post ? This is an important issue as pre menopausal women are more likely to get false negatives with this test. When I had to have the test due to an ovarian cyst (which later resulted in a salpingo-oopherectomy) I went when I was not on my period as I have heard that even this may increase the antigen count.

Keep in mind that in ovarian cancer cases (ie. when ovarian cancer is actually confirmed), removal of the uterus, ovaries and omentum will actually improve your survival. I have friends in the medical field and they tell me that this is one of the rare cancers that actually responds drastically to the removal of the gynecological organs. They don't know why. Most of the other cancers are not like this and the cancer will have usually already spread to other parts of the body. For some reason, ovarian cancer seems to remain for some time within the gynecological organs (OR perhaps it cannot survive as well outside of them). Therefore, if by some slim and unfortunate chance you are diagnosed with this disease, consider this seriously.

I completely understand though that until you have a real diagnosis (the CA-125 is definitely not a reliable test) you want to keep as many of your parts as possible. The ovaries offer women protection against heart and bone disease among other things. I think that this is a healthy attitude to have towards your body.

Oh and by the way, the doppler flow analysis is not conclusive either and there is a lot of disagreement about this. The only way to really know for sure is for the surgeon to go in there and look in addition to having the tissue removed and analyzed. I know our gynecological oncologist is very comfortable using laparoscopy for this but some surgeons are not comfortable with this. Needless to say that if ovarian cancer is diagnosed, a larger incision is usually necessary for the full hyst in order to be more meticulous.

Keep informing yourself and don't be afraid to bring questions to your doctors. If I can be of any further help, feel free to ask. Also, perhaps someone with more personal experience will add to this thread.

Take care of yourself.

Estria

 
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