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Posts: 16
Joined: May 2003

Hello, ladies! I just need to talk to someone so that I don't go crazy waiting! September, 2002 I was dx with cervical cancer. Rad Hyst and over 20 lymph nodes later, they assure me everything was fine. No chemo, no radiation. You worry and worry. My right leg has repeatedly swelled for no apparent reason and I oftentimes have pain in my right buttocks and down right leg. My right ovary has continually bothered me also. Two weeks ago I went to the doctor because my leg swelled so badly that I couldn't wear certain shoes and pants. My general doctor couldn't believe how swollen it was! She did an ultrasound for a possible blood clot, negative. My husband and I went for a week to Mexico. The whole time my leg was HUGE, my hip killed and my leg ached - each step killed! I went back to the doctor as soon as we got back. I was immediately scheduled for a CT Scan. They found a 3cm mass on my right ovary. Then they wanted to do an ultrasound and an internal one (strange!. They couldn't see them very well because my bowels are all around them due to the hyst. Now my OB GYN is getting involved. I am worried. I have 5 children and my greatest fear is dying from this stuff. Hearing your success stories is so helpful! What is this CA 125 thing?

Posts: 2
Joined: Jan 2004

Hi, mom of 5. I don't have your answer but no, cancer is not a death sentence anymore. I have ovarian cancer, had them take everything out. Coming out of my 3rd chemo (of 8).

I think CA-125 is a measure of cancer in your blood. I went from 526 to 20 - (the normal range) after just 2 treatments.

Would someone confirm the CA-125?

Posts: 1560
Joined: May 2006

Hi momof5, welcome to the site. I am a 3 yr survivor of Stage IIIC OC, so hld on.......it's not a death sentence anymore, fletcher is correct!

The CA125 is a measure of a protien in the blood that can indicate Ovarian Cancer. Zero to 35 being normal and above can indicate cancer but it also can indicate other problems. There is another scale that is used but I'm not familiar with it. Anyway I went thru 18 months begging for tests and then it was pretty advanced. However only God knows my fate and it's in his hands. I have done remarkably well and appear to have no cancer.
Please feel free to contact me, I understand your fears and truly care how you are doing. Susan (Teri50)

Posts: 6
Joined: Dec 2003

Hi Teri50,
I was going throught the archives and found your response to catch my attention.
You had mentioned that you had to beg for testing to be done 18months before you were finally diagnosed? I'm not sure if I read this correctly
Were you having symtoms all along and they couldn't find out what was wrong? because I'm going through similar things if this is true.
I need to talk to you. Hope you respond.
Linda S.

Posts: 1560
Joined: May 2006

Yes Linda you read it correctly. We tested every organ in my body BUT hormone eval and Ca125. By the 3rd Dr. and one year with him he finally gave me both 2 days before surgery. Merry Christmas, Ovarian Cancer Stage IIIC.

Posts: 1560
Joined: May 2006

Yes Linda you read it correctly. We tested every organ in my body BUT hormone eval and Ca125. By the 3rd Dr. and one year with him he finally gave me both 2 days before surgery. Merry Christmas, Ovarian Cancer Stage IIIC.

Posts: 650
Joined: Mar 2003

I'm suprised that your doctor was not more concerned about your swollen leg, given that you had the cervical cancer and surgery! I have found that deep found thrombosis (DVT), which causes leg swelling, is a symptom of lower-body cancers, and is a huge concern with surgery in the lower body.

Are you being given blood thinners to alleviate the swelling? There's a huge concern for possible pulmonary embolisms (PE) with DVT, and if you have it, you risk having a PE, which can land in your lungs or brain! The brain embolism can cause a stroke or worse. Please ask about the blood thinner as soon as possible. I had a swollen leg for months before it resulted in a P.E., which put me in the hospital via the ER. It's nothing to mess around with!

Now, regarding the CA125 test, I'll put in some info from the Johns Hopkins site, one of my favorite reference areas: http://ovariancancer.jhmi.edu/ca125qa.cfm) that explains why it's not dependable, especially for Stage 1 OVCA:

"The CA-125 test only returns a true positive result for about 50% of Stage I ovarian cancer patients. The CA-125 test is not an adequate early detection tool when used alone.

The CA-125 test has an 80% chance of returning true positive results from stage II, III, and IV ovarian cancer patients. The other 20% of ovarian cancer patients do not show any increase in CA-125 concentrations.

However several women's reproductive disorders can cause a false positive result. Endometriosis, benign ovarian cysts, first trimester of pregnancy, and pelvic inflammatory disease all produce higher levels of CA-125.

70% of people with cirrhosis, 60% of people with pancreatic cancer, and 20%-25% of people with other malignancies have elevated levels of CA-125." From another source (Gilda's Disease, by Dr. Steven Piver), I've learned that OVCA is rarely stage at II.

Again, you must find out if you need blood thinners as soon as possible! I know just what you mean when you say "each step killed", and believe me, from what I've learned about DVT and PEs, it can kill. Blood thinners don't any obvious side effects, and can save your life. I've corresponded with another woman on this site that had a swollen leg experience similar to mine and was dx with ovarian cancer. One of Fran Drescher's largest (before finding her uterine cancer) complaints was that one of her legs ached. I don't know if it's possible to have leg swelling without clots, but I actually saw the clots in my leg during the sonogram, which went from top of thigh to ankle.

Please let us know how you come out with this. We all can use your experience for our information.

Posts: 1995
Joined: May 2003

Dear momof5:
I can feel the urgency in your words. I had stage 1C OVCA. No symptoms were present - I just needed to have a large uterine fibroid removed and they discovered the CA. My CA125 level was 48, which is not that high. But knowing I had a history of endometriosis and that can cause an elevation also, my doctor sent me to an oncologist to be sure. I'm eternally grateful for his wisdom! Anyway, sound like they didn't follow up thoroughly with you upon that first complaint of leg pain. I'm glad now you have the 'knowledge' so to speak, and you can move forward. Please keep us informed. I concur with the other replies - so many strides have been made in this field. I pray that you have a good oncologist who will be as dedicated to you as mine was (and still is) to me. Even though it has been 4 years since my surgery and 3 1/2 years since my last chemo, it is always in the back of my mind - can't get away from that. But I take one day at a time and do everything I can to support a healthy lifestyle. My thoughts and prayers are with you!

TealRibbon's picture
Posts: 44
Joined: May 2003

Sorry for posting this twice but I wanted to make sure you saw it. This is very important that you get checked out.

Hi Momof5,

Groundeffect has given you some good advice. PLEASE get that swollen leg checked out. I entered the ER in the summer of 2002 with a swollen and painful leg. They sent me to the vascular lab and did a doppler study from my ankle alll the way up to the groin. I had a blood clot in the leg that was in the surface vein. The sent me to my PG who gave me anti -inflamatory drug. Two weeks later I was back in the ER, this time when they did the doppler they found a DVT. I was hospitalized and they ran more tests and found stage 3 ovarian cancer.

DVT can be a symptom of lower body cancer. PLEASE insist on a doppler study sooner than 8 weeks!

Please post and let us know how you are doing.

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