Saw Onc for 1st time today - what's next?

[SuzinTN]

I am 48, pre-monopausal and have been having bleeding and ovarian problems for a few months.  My GYN said my ultrasounds are of concern so did a uterine scope and biopsy and it was ok although lining very thickened.  

Toda I saw the oncologist and my CA-125 has doubled in 2 weeks and now is right at 90.  I have a blood clotting disorder, and hve had 2 pulmonary embolisms, so the oncologist has recommended a complete hysterectomy asap.  (they only want to go in once since I am at risk of clotting)  My question on this is naive but I just got this info today, and thought the next step would be a biopsy or something.  Question:  how and when do they find out if it's ovarian cancer?  When do I find out and how long does it take?  Hysterectomy is scheduled for 10/27!!!  Thanks fo reading and replying!!!   Suz

[jane65]

Hi,
I don't want to scare you, or try to influence you, but in 1983 I had a hysterectomy  for conditions like you have.
My GYN took everything except one "healthy" ovary so that I wouldn't go into premature menopause.
Unfortunately, in 2007 that "healthy" ovary is the one which was diagnosed with  OVCA. I'm stage 4B and it has metastasized to my lymph nodes.
Obviously,  if I had it to do over, I would have had them take both ovaries.

It just worried me, and I wanted to share my experience with you.

Good luck to you,
Jane

[SuzinTN]

My ovaries both have cysts and with my heavy bleeding and thickened uterus lining they are recommending removing everything.  She did say if one ovary is ok she would leave it if I requested it.  My issue is blood clotting disorder so they want to do as few surgeries as possible since I clot more than normal.  

[Plonanon]

Yes, the biopsy (called a "frozen section") is done during surgery. Is the plan to remove your ovaries during the hysterectomy, even if no cancer is found? Is the surgeon a gynecologic oncologist (a surgeon trained to operate on gynecologic cancers)? If there is any suspicion at all that it is cancer, you should have a gynecologic oncologist do the surgery, as cancer survival is better when the surgeon is a gynecologic oncologist, not a regular gyn or regular surgeon.

I would make sure to find out the details of the surgeon's plan. If there is no sign of ovarian cancer and there is no other pressing medical need to remove your ovaries, you may well be better off keeping them. It used to be fairly routine to remove ovaries during abdominal surgery because of the small chance of ovarian cancer. Various studies have shown, however, that taking out ovaries has a lot of ramifications for future health, and so unless there is a solid medical reason for it, it is best to leave them in.

Good luck and keep us informed of your progress.

[jane65]

Hi Suz,
I'm sorry to hear of your problems, I can understand how concerned you are, especially with your blood clotting problem.

The way OVCA is diagnosed is when you have surgery, your doctor will send biopsy samples of the tissue he removes, and anything else that looks suspicious to the pathology lab. They will make the diagnosis after examining the tissues.

In my case, they informed the doctor while I was still on the table that the specimens he sent were cancer. I imagine they do that if they are benign as well.

The path lab sends a thorough report to the doctor  asap, and he'll give you the report by phone, or schedule an appointment to discuss the findings.

Good luck and I wish you the best. The important thing is that you're under a doctor's care and getting treatment.

Please keep us informed, we'd like to support you and help any way we can.

Jane