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Unread 03-24-2003, 10:37 AM
possible ovca diagnosis

Hello, I have been reading some of your posts over the past week and feel I have found a sympathetic source of information.

Having suffered from menorrhagia for two months, my doctor sent me for a transvaginal ultrasound scan two weeks ago. A mass of 12.6 centimetres diameter was found "within the left adnexae" (what does that mean - on the left ovary?) plus multiple uterine fibroids. My abdomen is slightly distended, otherwise I have no other symptoms.

I saw a gynaecologist one week ago who took blood with a view to testing for tumour markers. I see him again next Tuesday (1st. April). He spoke openly of the possiblility of ovarian cancer.

I am terrified. I have five children, the youngest of whom is only one. I do not want to leave them yet.

Can any of you tell me what the likelihood of cancer is? Also, is the time-frame of my tests etc. reasonable? (It seems to me that two weeks is a long time to wait for the tumour marker tests.) Whatever happens I am definitely facing major surgery. The doctor wants to do a total abdominal hysterectomy with bilateral salpingo-oopherectomy, though says that if the blood tests are very favourable I might be able to "twist his arm" and conserve my uterus and right ovary / fallopian tube. In any event my left ovary and fallopian tube must go.

Thank-you in advance for any help, information or support any of you feel able to give.
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Unread 03-24-2003, 11:59 AM
possible ovca diagnosis

I'm no ultrasound expert, but "in the left adnexae" means in the vicinity of the left ovary. It may not be possible to tell if the structure is part of your ovary or not.

Non cancerous ovarian cycts in women of reproductive age can get VERY large, and the bleeding can come from a number of sources (if the cyst is messing up your menstrual cycles, from the fibroids, even from having been pregnant and/or breastfeeding).

On the test: I would expect they did what is called a CA-125. Normal is under 35. But the number can be raised because of a wide number of non-cancerous causes (endometriosis, fibroids among them).

I'm sure the test results are in. Why not call for the results. If your doc is still concerned, please get an appointment right away with a gyn-oncologist. Insist that a gyn-oncologist do your surgery and manage your care.

Unread 03-24-2003, 12:44 PM
possible ovca diagnosis

Dear Latina,

I'm so sorry you've having to go through this. I went through something similar last month. My abdomen was also distended, due to what I thought was a post-appendectomy complication. It turned out my swelling was due to a fluid called "ascites." CT scans revealed the fluid. A barium CT scan revealed the tumors.

Unfortunately, I did have cancer. Others have the same surgery and doctors find benign tumors. My CA125 was 161. But from what I understand, it's not always an accurate indicator of cancer.

Two weeks is a very long time to wait for blood test results. Mine were back fairly quickly. My doctor said some tests wouldn't wouldn't be back for a week or two, but they were all back the next time I saw him (two days later). So perhaps it just depends on the lab.

It's best to see what your doctors say. They can suspect certain things, but I believe surgery is the only real way for them to definitively determine what's going on with you. Once they open you up, they can see a lot more than scans reveal.

Get yourself to a gynecological oncologist as soon as you find out what you can from your regular doctor. I'm sure he will give you a referral. Once my doctors found the tumors, they handed me off to a gynecological oncology team immediately. But I had to wait a week to meet with them.

I do want to say that I AM NOT LEAVING YET. This is a diagnosis, and I must get treatment to rid my body of this. This type of diagnosis doesn't mean you have to go anywhere! So don't think about that right now. Just think about finding out what's going on, then dealing with it as best you can once you know what it is.

I hope that it's nothing! :-) Many s for you!
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Unread 03-24-2003, 02:35 PM
possible ovca diagnosis

s Latina

I support what the other ladies have said. Call the doctor's office for the results of that lab test. Two weeks is too long to wait.
Hopefully all of your worrying will be for nothing.
But if the possibility of ovarian cancer exists, it is imperative that you consult with a gyn oncology surgeon. They are the only doctors qualified to do the proper surgery and staging.
Unfortunately nothing is known for sure until the biopsy.
So unless the ultrasound shows that your large mass is clearly cystic in appearance, make an appt with a gyn oncologist.
Keep in touch!!!

Unread 03-24-2003, 03:11 PM
Agree With Others

Call and ask about test results. Even if the tumor marker is sent out, it should not take that long. Also, do have a gynecological oncologist do your surgery if there is any possibility that this might be cancer. Ask too for a CT scan if there's any doubt about the makeup of the cyst. CT scan can also show what might or might not be going on. Good luck--keep posting.
Unread 03-24-2003, 04:05 PM
possible ovca diagnosis

It's so hard to Not Know and waiting is horrible. However, don't jump to any conclusions although, for some reason, our minds always make us prepare for the worse. Definitely call your Dr. to find out your test results (I've been known to call every day). Also, if you need surgery, have a gyn/onc do it. I've read to many posts from ladies who's Gyn. did the surgery, found out it was cancer, and then needed a second surgery to examine the lymph nodes.

We've all been where you are - we're all alive a kicking and you will be, too.

This is an awesome site. Please keep posting. We really need to know how everything goes.
Unread 03-24-2003, 09:05 PM
possible ovca diagnosis

the blood test that the doctor did on you is a ca125 test, it is a tumor marker and is not 100% accurate. I had ovarian cancer in the early stage. I was lucky that my doctor found all the cancer and it was removed from a hysterectomy. It is important that you keep all of your testing appointments. My doctor also told me in the beginning there was a good chance I had ovarian cancer. Two weeks is really not that long when you consider all the testing they do. I had a vaginal ultrasound as well as cat scans and mri's. My ca125 test was 4 times the normal, but the doctor told me that that test can be elevated due to other factors.
When you have the surgery, they will do a biopsy to determine if you have cancer.
Please, I cant stress enough to keep all your testing appointments. Good luck to you and God bless. I hope you are as lucky as I was.
Unread 03-25-2003, 06:39 AM
possible ovca diagnosis

Thank-you all for your kind replies. I am seeing my primary care doctor (G.P.) the day after tomorrow and I will certainly ask her to 'phone and get my test results. I might explain at this point that I am British and I am getting treatment on the National Health Service: there is still something of an expectation that we will humbly and gratefully wait for the doctor to tell us what to do! I will also ask her about referral to a gynaecological oncologist if the tests are suspicious of cancer. (I must remember to write a list of questions or I will be bound to forget something!)

I am scarcely of reproductive age: I turned 50 this month, though I am still pre-menopausal. (My little guy was adopted at birth by me in December 2001). Does this increase the odds of a 12.6 centimetre mass being malignant? Oh dear, I suppose I will only know for sure after surgery. How long after surgery?! This is a scarey time.

Reading the posts of those of you who have been diagnosed with cancer and are getting on with your lives so pro-actively is very encouraging to me. Siren Song, I totally accept your point about not leaving for anywhere just yet! I will keep you posted.
Unread 03-25-2003, 08:06 PM
possible ovca diagnosis

Dear Latina,

Write a list of questions AND be sure to:

1. Bring someone with you to listen to what the doctor says
2. Write down what the doctor says, since I guarantee you will forget half of what she/he says within three hours.

I say this from personal experience. The "shock" factor tends to make me forget. I now take a steno-pad to every doctor appointment, along with organized questions. I then write everything down. My mom (kindly) accompanies me, so she can fill in any blanks I might have missed. If she cannot come, I will bring another friend.

I do not know if the size of the tumor means anything. Mine were around 10cm and 5cm. They were not cystic. They were solid masses. I also don't know how long they could have been there. I am curious about that.

I wish you the very best in your next doctor's meeting. I love the UK and have visited many times. The National Health Service should be willing to speed up future results if they suspect that this is indeed a serious situation perhaps involving cancer. I am grateful that from time of tumor discovery to meeting with the gynecological oncologist to surgery was about two weeks. Any more, and I would have gone mad.

Please keep us posted. s!
Unread 03-25-2003, 09:16 PM
possible ovca diagnosis


I'm glad to hear you're going to see your G.P. soon and I hope they will be able to get some answers on your tests. I know here in the U.S. results depends on the lab performing the test, where mine used to take about 5 days to get back with the old lab, it now takes only 2.

I don't think the size alone of a tumor matters necessarily. From what my old Gyn Onc explained once, to help prior to surgery and pathology he can get a good idea based on the shape, texture and density of a mass. He said one that is misshapen, bumpy and solid would be more prone to be a cancerous tumor than one that is smooth, round and non opague. There's always the exception so he only used this as another tool to get a general idea prior.

I hope you'll be able to get some answers soon and keep in mind when you get your CA125 results, that many things can affect this test and its NOT a screening test but a marker for existing cancers.

Keep us posted on how your visit goes, we'll be keeping you in our thoughts and prayers.



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