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Questions about ovarian cancer Questions about ovarian cancer

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Unread 12-04-2001, 03:57 PM
Questions about ovarian cancer

Hello everyone-
I am deathly afraid that I have cancer! I do too much research on the internet and I am scaring myself. Please tell me if you think my story is worth something, or if I am just paranoid.
I am 23 yo, was scheduled for TAH on 12/10 but that has been postponed. I have had ovarian cycts for years, as far back as 16 I think, but they have never been a substantial size. I have history of ovarian, breast, and uterine cancer on Mom's side- gmom, aunt, great gmom, 2 great aunts, mom has fibroids only right now. I have been suffering from LRQ pain for 6 years, which is able to be reproduced on exam of that area & uterus. Nothing on the left ever. I have severe dyspaneuria, no period now from Depo (went off last month), constant fatigue, swollen tummy, terrible bowel problems (diagnosed as IBS, GI says I am fine otherwise), urinary symptoms without infection, etc etc. My doc wants me to go to endocrinology, as I gained >50# in less than 6 months for no reason, and I can't lose it. I have my regular doc & OBGYN treating me, and both are aware of symptoms and family history. The pain has been getting much worse in the last 6 months or so, and I have run the gamut of meds and relief methods. THAT is why I opted for the surgery, not because they know exactly what is wrong. MAKE ME FEEL BETTER!!! ARRRGGHH!
Sorry, anyway, questions are: For those of you who have OC, is this how it started for you? Can the cancer lay around for a while before consuming, or does it move pretty quickly? Should I get yet another opinion? What kind of testing can be done, without being too invasive, to rule out cancer? Am I crazy or what?
Thank you all SO much,
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Unread 12-04-2001, 04:13 PM
Hi Kelly

Hi Kelly -
I'm sorry to see that you are in so much pain and are worrying. My problems were diagnosed with sonograms, cat scans and a CA 125 blood test for malignancy. Have you had any of these tests?

Hope you find relief soon. RobinS
Unread 12-04-2001, 04:29 PM
None of that yet, Robin!

Thanks for your response!
I have had a number of blood tests, ultrasounds which show "simple" cysts, corpus luteum has been thrown around too. My questions to them on that is, if they grow an dgo (so to speak), why do I have constant pain?! I have had a pelvic CT, but that was in 1996 and they were looking for kidney stones. I don't think anything was noted or looked at in the uterus or ovaries then. I have read about the CA125, but some docs are against this for a diagnosis, as people with fibroids and such can show up with them. The OBGYN thinks I might have adenomyosis too. Nothing to diagnose that but a hyst.
Thank you so much for your kind words!
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Unread 12-04-2001, 04:45 PM
You're Welcome

I know that doctors don't rely fully on CA 125 test results. However, they are a valuable tool, when assembled with other test results in the entire diagnosis. My dr. told me when I had my CA125 test that it could give false positives. There were several reasons. They also said (dr. team) that different levels indicate if it is in the false positive range or highly elevated means it is probably not a false positive. Bottom line: my CA125 test was accurate in the indication of cancerous tumors on my ovaries.

My cat scan showed tumors that were filled with fluid but NOT clear fluid like normal ovarian cysts.

My sonograms showed "large pelvic masses" on my ovaries.

Nobody is exactly the same. So take what I have said as just my opinion and my experience. If you are not at ease see your dr. That is my best advice.

Isn't this site great! There is so much info in the archives. If you type in your search words you will come up with tons of posts on your subject. Good Luck. RobinS
Unread 12-04-2001, 04:55 PM
Questions about ovarian cancer

Hi Kelly,
I am so sorry to hear you have been in so much pain with these problems.

Like RobinS I too was diagnosed through blood work and an ultrasound and CT scan.

You say your surgery for Dec. 10th was postponed. Was this so you could think about this decision further? You are very young I must say and if cancer is not involved they perhaps feel there are other options for you.

You say your doctors are aware of your history and want you to see an endocrinologist. Based on this it sounds like they are looking after you very well and that they feel there are other causes for your pain and sudden weight gain.

You have not said if they have said whether they thought there was a possiblity of cancer. Have they?
Kelly, all I can tell you is that I didn't have any of the syptoms really that you speak of.
You say you have gained weight, where as I lost about 20 lbs. fairly quickly and had no noticilbe pain up until I went to the doctor. They said my tumor was only growing for abut 5 months at that point.

Have you asked your doctor if he/she thought it would be good to consult with a gyn/oncologist? That really is the only suggestion can think of. The internet can be very scary when searching for medical information I agree, and you say you have been reading alot there and its very easy to imagine the worst but it sounds to me as though your doctors are taking good care of you and are very involved in your case.

Please keep us posted on how you are doing, and keep asking questions of the doctors, and do mention about whether they think an oncologist consult would be helpful.

Keeping you in my prayers.
Unread 12-04-2001, 07:55 PM
Questions about ovarian cancer

I did not have actual ovarian cancer, but they did find a carcinoid in the dermoid cyst on my ovary. So, I can't really give you any insight into symptoms, etc.

But, I was just wondering if it would be helpful if you had a laparoscopy so they could really look at your ovaries and remove the cysts so you can be more comfortable. Also, they can get an accurate diagnosis on the cysts once removed.

I am sure you are really scared and you need to do whatever is necessary to regain peace of mind. If you don't think your current doctors are on top of things, then you need to move on and find a doctor who you trust and someone who can give you answers.

You didn't say why the TAH was postponed, but it sounds like a reasonable course if no one is totally sure that it is necessary. There are lots of alternatives. You didn't mention if you are married and if you have children yet. That is always an important consideration.

Keep on with your search for answers, and keep us informed as to how things are going. We will be with you to lend support and lots of 's.

Best wishes and Happy Holidays.

Unread 12-04-2001, 08:29 PM
Questions about ovarian cancer

Cysts apparently do not increase your risk of ovarian cancer in and of themselves. There's more about that here--|001,00.html

There is ovarian cancer and then there is cancer in a structure in the ovary. Ovarian cancer is fast moving and you wouldn't be hanging around wondering. Your doctors would be moving on it fast. I had cancer in a structure in the ovary. Those can move more slowly. An ultrasound located a teratoma--a "monster" that was definitely not a cyst. They weren't sure what it was but they decided they should look and see. They were taking it slowly by trying another round of ultrasound two weeks after the first and surgery a week and a half after that. In that time my slow growing cancer had increased a centimeter. Everyone could tell it was growing. So you see, it's not likely in your case. Actually I had no pain. Just right at the end a weird occasional twinge.

Fibroids are only very rarely connected to cancer and then it has to be a very particular rare kind of fibroid (prolapsed submucosal fibroid). So your mother's experience is very unlikely to be related to cancer.

Cancer in the family is scary, but the genetic link is strong only if they had their cancers before they were menopausal.

Talk to your doctor of course about your fears. But once you start messing with your hormones all kinds of metabolism things can act up, so the weight gain etc. might not be so unexplainable.

What do your doctors think about the possibility of endometriosis? The adhesions from that can be very painful, but hysterectomy isn't always the answer there.

Second opinions are always worth getting before major surgery and maybe a second opinion can address your fears as well.
Unread 12-04-2001, 08:51 PM
Questions about ovarian cancer

Hi Kelly,

I can certainly understand your fears and would wholeheartedly recommend consulting with a Gyn Oncologist if possible. Since this is their specialty, they can give you more insight on what your risk factors are and may very well be able to calm your fears.

I know everyone symptoms prior to surgery differ greatly. I, myself had no real "unusual" symptoms, at least unusual for me. I did have abnormal periods, bowel movements and frequent urination. The periods and bowel movements had always been my "norm" so weren't anything that I would have noticed. Now, the frequency in urinating could have forwarned me but I had had problems with this type of thing ever since I had a kidney infection a couple of years prior so I didn't recognize this either as something unusual. I didn't have any pain, any weight gain or loss or bloating.

Everyones correct in regards to the CA125 test, it can pick up on other conditions and doesn't pick up on all types of ovarian cancer, only the ones that raise the particular protein that this test measures. Thankfully, the type that I had is measurable by this test and was picked up, which is what gave us the clue that I had something going on.

I wish you the best in your search, and sincerely hope you find some answers. Please keep us posted on how you're doing.


Unread 12-04-2001, 11:12 PM
I forgot

Kelly - I forgot to say what the others did - I also saw a gyno/oncologist before my surgery. Consultation is an excellent way to releave your fears and find out what is going on.
Unread 12-05-2001, 04:04 PM
Questions about ovarian cancer

And if it will make you rest any easier, (this is a quote from my oncology dr.) "Cancer is RARELY painful at all, that is why it is so deadly, you have NO clue." So having pain is actually a good sign.


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