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Ovarian cancer questions Ovarian cancer questions

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Unread 12-23-2002, 02:46 AM
Ovarian cancer questions

Hi Ladies. I've been over on the pre and post-op boards, but this is my first post here. You see, I wasn't supposed to have cancer! I had a TAH/BSO on 12/12 due to a cyst on my right ovary. The docs assured me that they really thought it was an endometrioma, and if they had thought I'd had cancer, they'd have had me into surgery right away. (The growth was found in September.) Well it turns out that I had an atypical proliferative serous tumor within my right ovary. This is also called a borderline tumor or tumor of low malignant potential. My doc said that since my left ovary and pelvic wash were clean that I am now considered "cured", and need no further monitoring or treatment. The recurrence rate of this type of cancer is only 2%. It sounds like this is the cancer to have if you have to have it at all, but I do have a couple questions.

Did any of you have this diagnosis? If so, what has your experience been? Are you being monitored with any sort of diagnostic tests for a recurrence? My doc said there isn't a good test, and I should just watch for lower GI symptoms and get them checked out. Of course, she had to admit that once these symptoms appear, it is highly unlikely I could be cured. I'm afraid I'll be paranoid every time I have a little gas or else not pay close enough attention and miss something! I'd feel better if somebody checked me out now and then and said I was still cancer-free!

My other question concerns something that happened during my surgery. My doc told me prior to surgery that I couldn't have laparoscopic surgery or a small bikini line incision because of the danger of spilling the contents of the cyst into my abdomen during its removal. She said that if it did turn out to be cancer, that would immediately move me from stage 1 to stage 2. Well, guess what happened during surgery! My doc didn't tell me this, but I read it in the surgical report. I quote, "As it (the ovary) was excised, it began to leak some pale brown fluid, but did not drain fully. This was immediately suctioned out of the pelvis, and this ovary was sent for a frozen section diagnosis." Since my doc didn't mention this incident to me, I can only assume she doesn't think it's a concern. I didn't ask her about it at my last appointment because I hadn't yet received and read the report. I will ask her at my next appointment in a month, but in the meantime, do any of you know if I need to be concerned about this fluid leaking into my abdomen? Yes, they suctioned it out, but there's no way they could be sure to get every cell. Am I worrying for nothing?

Thanks, Ladies. I love this web site.

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Unread 12-23-2002, 04:35 AM
Ovarian cancer questions

s Amy

Welcome to Cancer Concerns. My own type of ovarian cancer was different than yours, but I have a good web site for your type.
I hope you find it helpful.
I would also suggest you see a gyn oncologist for a second opinion on your diagnosis, possible treatment, and proper followup. These docs are the experts. You could also get a second opinion on the pathology reading on slides from your surgery.
LMP has a excellent prognosis. Best wishes to you.
Keep in touch.

Unread 12-23-2002, 05:13 AM
Ovarian cancer questions

My reaction while reading your post was the same as Karen Ann's. I think you need a second opinion from a gyn oncologist--if for nothing else, to help your peace of mind.

I had a different kind of borderline atypical ovarian cancer. CA125 can't track it but it moves slowly and was caught early, so no radiation etc. My doctor is a gyn oncologist, considered one of the best in the country, the kind of guy that other people get referred to from their own doctors in the region. Some people even travel to see him from quite a ways. So, I figure his plan for me is a clue--but since our cancers were different maybe not the kind of plan he'd use for your case.

For the first year and a half I had appointments every 3 months and a CT scan every 6 months. I now have an appointment and pelvic exam every 6 months and a CT scan every year. I loathe the CT scans (I have bad veins), but I do like the reassurance. You probably don't need that kind of monitoring, but it just shows that follow-up for borderline cancers isn't unreasonable.

And frankly, I want to drive to wherever your doctor is and her hard for saying that by the time GI symptoms appear that you are unlikely to be cured. She has no right to say that. If she means the odds are below 50%, well, maybe, but we are people not odds and medicine changes all the time--especially in cancer research. There are some radically new treatments that are so exciting though still experimental, she's just wrong.

Anyway, get a second opinion, and not from her practice group.

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Unread 12-23-2002, 12:02 PM
Thanks for the input

Thanks, ladies, for your suggestions. I was thinking of getting a second opinion. There's a gyn oncologist here where I live. My doc consulted with him after my second ultrasound. He's the one who said the cyst on my ovary was probably an endometrioma NOT cancer. I think perhaps I should go elsewhere for my second opinion. There are 2 other gyn oncologists on my insurance plan within 60 miles of here.

Two pathologists looked at my samples and came to the same conclusions, but I just found on Johns Hopkins's web site that you can have your slides sent to them to be read as a second opinion. So maybe I'll have my slides sent there then once I get their report, make an appointment with a gyn oncologist for another opinion on follow-up care.

Thanks again. My doc makes me feel a little like I'm being paranoid. Maybe I am, but then Johns Hopkins and a gyn onc will just give me the same assessment and prognosis as she did, and I'll have a lot more peace of mind. I only get one chance to do this right!


Unread 12-31-2002, 08:03 AM
Ovarian cancer questions

Amy, when my tumor was "found", my regular ob-gyn discussed the possibility of ovarian cancer, staging, and also the concern of it's bursting or leaking thereby filling my abdomen with fluid. That is why I had to rush my decision on my surgery as I was set up for staging. It is a frightening experience. The first thing I did was locate a ob-gyn/oncologist to get his opinion. I traveled to another town just to get one as I live in a small town. But I felt I needed an oncologist. My tumor turned out to be benign but I would suggest finding a good ob-gyn/onc as they are specialists in this field. It will make you feel better. I felt better knowing that he dealt with this type situation all the time. This is just my opinion. I wish you all the luck in the world and will keep you in my prayers.
Unread 12-31-2002, 12:47 PM
Second opinions

Thanks, Sky. That's what I'm going to do. Yesterday I had my pathology slides sent to Johns Hopkins. I found out on their web site that they will read them and give you a second opinion on the pathology. It costs $200, but is covered by some insurance plans. I'll pay for it myself at this point. Once I get the report back from them, I'm going to make an appointment with a gynecological oncologist to get another opinion on follow-up care.

I'm glad everything turned out well for you!

Unread 01-01-2003, 07:04 AM
Ovarian cancer questions

s, Amy,
Never let a doctor make you feel paranoid about your medical concerns. My internist (whom I adore) actually laughed at my concerns and insistence on further tests. Said I didn't fit the profile. However, medical care is a team effort between medical providers and you. Although my internist didn't believe it was cancer, peace of mind is one of our medical goals, so tests were continued. It was cancer, very early, very curable - he's relieved I insisted, I'm relieved it was caught early. The diagnoses made us both more proactive and strenghtened our partnership.
Unread 01-01-2003, 12:29 PM
Way to go!

Three cheers for you, Laura! We've got to listen to our own bodies and instincts and act on that. I'm so glad your cancer was caught early. I could have postponed my surgery because my health and disability benefits changed for the better as of today. My gut said don't do it even though the docs insisted they were pretty certain I didn't have cancer. I'm really glad I didn't postpone now. Hopefully, the second opinions I'm getting will just confirm what I've already been told. Then I'll feel better, and everyone will be happy!

Thanks for the support.


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