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Ca markers for Poss. OvCa; going for surgery Tues.!

Posts: 3
Joined: Jan 2004

Hi there. I'm new to this site and have had the pleasure of meeting a few of you in chat. Any insight would be appreciated.

I'm a 42 yr. old female (obviously) w/2 kids (per C-section). I had a partial hysterectomy (incl. cervix) 2+ yrs. ago. I refused my ovaries to be taken. They were fine then, and I wanted the natural hormones.

I recently (8 days ago) had an ultrasound, after my annual pap when I almost flew off the table when the nurse practitioner palpated my ovaries (I couldn't get in to see my gyne for 2 mos. for annual exam, so I went to the NP w/whom I used to work. She's very thorough. And I didn't want to tell the gyne that I needed to get in sooner b/c I was having probs., b/c I wasn't convinced it was any big deal....until, the NP palpated my ovaries! I saw stars!

I have a history of ovarian cysts, but they come and go. And the largest these cysts have ever gotten was 2-3 cm. But right now, the ultrasound measured at about 8-9 cm. on the left, and (I forget...) about 3-4 cm. on right.

I have been experiencing discomfort since Aug., but really just thought it was the same ole cyst thing coming and going (and maybe it was). But, the discomfort stayed and then the discomfort turned to pain. I thought this/these cyst(s) were being persistent this time. But in November I knew I should get seen, just in case. So I made the appt. Then in mid early Dec. I began having alot of pelvic pressure. Late Dec. began w/bladder complaints--couldn't hold it nearly as long, some urgency, etc. (no history of bladder infections).

I went for my annual pap 2 1/2 wks. ago and my wonderful NP encouraged me to get an ultrasound, b/c of severe pain w/pelvic exam, and she said that the left ovary w/cyst was large. I told her that this was just the same ole thing and I'd be fine, but she still encouraged me not to wait--to get the ultrasound.

Well, I finally got the ultrasound 8 days ago, b/c the pain and fullness was getting worse. And after the ultrasound, I went home and called my gyne's office and asked them to get a copy of the report and check it out. I told them I had a 8-9 cm. cyst. Well, he got the report, then called me and said he wanted me to get labs drawn (cancer markers: CA 125, Inhibin, etc.), and to come see him "tomorrow" (which was this past Tues.). I was expecting him to want to see me b/c the tech confirmed how large the cyst was (I am an LPN--not working in the field now, partly due to new Lupus diagnosis this year, etc.). I could see on the US screen the cyst was large.

Anyway, my husband (of 21 yrs., and a great support) and I went to talk to gyne, and I was really surprised when my otherwise optimistic doc said he thought I had a 50/50 chance of the cyst being benign. Hmm, not 90% chance of benign? (However, that was before all the labs got back, which are fine--but the Inhibin, the newest test, I guess, is due back tomorrow).

Well, I was wondering if any of you had tests that came back good, but had cancer anyway. Not just the Ca 125--I know they are not dependable. But also, I understand that Ca markers can be negative if it's a low stage. Can any of you enlighten me on that? So many are talking around me, but are afraid to say anything to me. That is so frustrating. I can deal w/anything. But this quiet before the storm is the worst. I'd like to know the worst case scenario (even though I am really optimistic). I just feel that the gyne is preparing me and progressing w/the surgery as if it IS cancer, although he says it probably is not. He even has another surgeon on call, to do the staging if necessary. I appreciate his being prepared.

Can any of you relate to my situation? I am almost expecting them to say I have a stage 1 or 2, b/c the ultrasound showed a complex cyst (w/septums) I guess some of which is fluid-filled and some not. I'm going for surgery in about 36 hrs. from now, and would appreciate your feedback. And this may very well be just annoying benign cysts (I sure hope).

Thanks so much for any reply. And I wish you all well. God bless.

~Blessed (very blessed, indeed!)

Posts: 1
Joined: Jan 2004

Dear Blessed312 I have just signed up for this site and came across your note.I personally can't relate to your situation in regards to always dealing with benign cysts but I was diagnosed with 3rd stageA ovarian cancer in July 2001.I am a 43 yr old mother of a 23 yr old daughter and have a wonderful man of 26 yrs whom is still right beside me.I had a complete hysterectomy in Aug.2001 and underwent 6 rounds of chemo in Oct.2001 which ended Jan 2002.I currently just started another 6 rounds of chemo after being cancer free for 2 yrs.My first one was Jan 5,2004.Is the surgery you are facing the removal of your ovaries or the removal of cysts?I realize there are some women(understandably so)who like to keep their ovaries for the reason that you have mentioned but personally if your physicians want to remove your ovaries, I would let them before it could be a more serious situation.If they find that you have 1 or 2 stage cancer you are in the early stages of the cancer,your chances are good in fighting it. I have a wonderful oncologist that answers any questions that I have and whom always has been upfront with any information in regards to my situation.Ask,ask,ask that is your right as a patient.I never had any symptoms of pain or discomfort and all my periods were on time.Pap smears can show negative and you can still have ovarian cancer.It took colostomy surgery,my persistant surgeon and the grace of GOD to find my cancer.As for any menopausal symptoms after the removal of ovaries I have endured some but there are many natural sources that can help curb the side effects.My main one was hot flashes but vitamin E can help subside those.I wish you well and you are in my prayers.Take care,GOD BLESS and I hope you can let us know what happens.Sincerely,TSweet60.

Posts: 3
Joined: Jan 2004

Thank you, ladies, for your responses. Groundeffect, we seem to have alot in common. Thanks for the feedback on the CA 125. I was able to find info. on that. But I'm glad to read more. I can't say my gyne is also an oncologist (small city) but he's a Phd and the director of gyn. at the hosp. The other surgeon on-call (in case it is cancer) is well respected, and actually did my hernia repair and is involved in alot of cancer surgeries. So I feel good. But it's not like I'm going to a major city for this surgery. But my gyne is wonderful.

Tsweet, I am having my ovaries removed. The cysts have taken them over. Inside and out. And the cyst has many walls or septums, and is fluid-filled as well as some apparent solid, I think. Did you have an ultrasound, and what were the characteristics of your ovaries? Did you have a family history of ovca? Just wondering.

Thanks for the replies. I encourage more, please. I find the best way I deal w/this unkown thing before me is to hear honest responses, and to prepare myself. If it's not cancer, then I lost nothing, and I'm still optimistic. Right now, it's 50/50 chance of cancer/benign.

I'll try to come back and report how it went. I appreciate you taking the time to respond. Thanks.

God bless!
Blessed :)

Posts: 5
Joined: Jan 2004

Blessed & everyone, I am learning a lot just by reading your posts. I never went for regular check-ups and hadn't been to the gyn in almost a decade. I am 43 w/4 kids and just had a complete hysterectomy for endometrial cancer and the oncologist thought a large mass was a fibroid tumor before surgery, but when he operated he found that the tumor was a rare form of ovarian cancer called a granulosa carcinoma. I had my surgery Dec. 18, 2003 and the pathology report wasn't back from the lab before I was discharged. The oncologist did not give me a definitive on the staging yet, so I am going to ask about that when I go for my post-op check-up next week. He said it looks like Stage I for both the endometrial and the ovarian cancer, but he wants to see the pathology report on the lymph node biopsies first.

I have to have radiation treatments and depending on those lymph node biopsies the oncologist said I might need some chemo too. I also had a mammogram done and my gyn wants a breast biopsy done on a small mass they found.

My gyn referred me to a gyn oncologist for the surgery and treatment, because she said they weren't equipped to deal with gyn oncology at the local hospital. However, I need to have the breast biopsy done at the local hospital and if it is a cancerous lump I will be referred to the oncologist for further treatment.

I actually feel like one of those idiots you read about in weird news, because the ovarian tumor was around 20 pounds and huge. I have had stomach problems the past few years - lots of bloating and acid reflux, so I thought that bloating was due to my stomach problem and really it was this huge tumor....... I learned my lesson about avoiding routine check-ups the hard way, but all these tests and constant poking and prodding are already getting tiresome. Guess that is the new normal from now on.

Posts: 650
Joined: Mar 2003

Hopefully, your staging will come back low. I did some reading about granulosa carcinoma, and it seems to be a form that can be treated with success when it's a low stage.

Don't feel so bad about the large tumor; the largest that I had removed (7 yrs. before being diagnosed with cancer) was 3 1/2 lbs., and I had four of them. Although I don't know that total weight of the tumors, it was a great relief to my digestive system to have them removed! I thought that I was just having constipation and other digestive problems. It's easy to try to overlook those symptoms when they're in advertisements all the time. I'm a little disturbed with and ad that's currently running that is targeted to women for a prescription medicine. All the problems that it's alleged to help could be symptoms of OVCA - general abdominal discomfort and/or pain (gas, indigestion, pressure, swelling, bloating, cramps). I think that it's easy to fall into a belief that we can take a pill (or antacids) and make it all go away, when we women should really be on the watch for more serious problems!

I was always diligent with having regular gyn checkups, so it's no guarantee that you won't have more serious problems, but it can get things in the important early stage. My gyn oncologist (who has done many, many surgeries finding OVCA) had only seen 2 other cases the were Stage 1, and I probably would have waited longer than I did if it hadn't come to a head with my having a pulmonary embolism, another "presenting" symptom for ovarian cancer.

Best of luck with your treatment, and with the breast biopsy, too! I've had one this year that was negative, thank goodness. I've also had a colonoscopy done that turned out well.

A number of women in my family (although no "first degree" relatives) have had breast and colon cancers, so I suspect we have the BRCA gene, and need to be especially aware of what's going on with my body.

Hang in there with all the poking and prodding! It seems to me it isn't so aggravating now that I realize the potential outcome if it's not done.

Posts: 5
Joined: Aug 2003

I've just gotta toot my horn about gynecological oncologists. My regular gyn did my hysterectomy and after ovca was confirmed I had the lovely experience of a second surgery (laparotomy) six weeks later for the surgical staging. Also had to travel to a city who had gyn. onc. a real bother but now realize the necessity of their specialization. I wish my mother had had the opportunity in 1985 when she was diagnosed. The real kicker is that about 10 weeks after surgery number two I developed a small bowel obstruction due to scar tissue - not the cancer - which was also corrected by (you guessed it) more surgery! I say this with a giggle but because I'm second generation (and probably more) I was offered genetic testing. Being BRCA 1 positive (no surprise there)and because my mother had breast cancer 5 years previous to her ovca I took the advice of several doctors and had a bilateral mastectomy w/lymph node dissection. I am such a pro at this surgery thing!! Actually I had the surgery because I didn't want to risk having to have chemo again for breast cancer!

Posts: 2
Joined: Mar 2004

Hi Susan, I just joined this site today so I hope you still read these posts. I had a routine hysterectomy on November 2, 2003. My gyn did not expect any problems so we were both surprised when the path report came back with ovarian cancer stage II. I also had endometriosis, which they also didn't expect, and have been told that the cancer started in the endometriosis and spread to the ovaries. One strange thing that happened during the hyst is they can't find one of my ovaries! Anyway, I had four rounds of chemo so far (taxol/paraplatin) and am scheduled for staging surgery on March 16. Then, if there are no changes in the staging, four more chemo and hopefully that will be it. I never heard a name for my type of cancer. The oncologist said it's a rare form of ovarian cancer and he has only seen it in three other women. The pathologist also said it was rare. I was just wondering if this is the same cancer you have, where it starts in the endometriosis. I'd like to hear how you're doing, even if we don't have the same circumstances.

Posts: 650
Joined: Mar 2003

Hi, and welcome to the site. I don't know about the Inhibin test, but here's an excerpt from the Johns Hopkins site (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.

I don't even know if my blood was tested for CA-125 or not before I had my hysterectomy, because I went in for uterine cancer (staged 1B), and the ovarian cancer(staged 1C) was found when the surgery was done. I did have a lot of symptoms, but nothing that prompted my ob/gyn to do a CA-125, nor my family practioner. My surgery was done at a large hospital away from my hometown, because there are no gynecologic oncologists here. My ob/gyn referred me to the oncologist after finding the uterine cancer with a mini-biopsy.

We had been investigating the various problems, and I had been diagnosed with fibroid tumors (again, after having them removed 7 years earlier with a myomectomy), so we all figured it was the fibroids causing all the trouble. I, too, had retained my ovaries (and uterus) for the hormones - and I was 42 at the time. The ob/gyn I was going to at the time told me my options, and that's what I chose.

I'll keep you in my prayers tonight, and wish you the best! I hope this answers at least a bit of your questions.

Posts: 1995
Joined: May 2003

Hello and hang in there! I had a history of endometriosis. At a 1999 November yearly check-up my doctor discovered a uterine fibroid, also took a CA125 which was elevated to 48 (normal 0-35). Said endo can elevate the level, but referred me to oncologist who knew more in that area. March of 2000 followed up with hysterctomy, trying to save one ovary - pathology came back, ovarian cancer stage 1C (it ruptured as it was being removed). Had complete hyst, omentum, lymph nodes removed. 6 rounds of carboplatin/taxol. CT scans, chest x-rays every 3 months. CA125 monthly. It fluctuates from 11 to 17. CT's and x-rays conclude normal. I do have general abdominal discomfort from time to time, but nothing shows up (thank God!). My doctor has recommended colonoscopy, mostly because of my age (49) and history. While the CA-125 is just a marker, I strive towards getting it down to the single digits. Eating plan, exercise plan, prayer plan! That's what keeps me in check. I never had ANY symptoms, so I am blessed that it was caught early. All of us can only do the best that we can, with the knowledge we have. Don't overwhelm yourself with too much (I went on the internet immediately after my surgery and got VERY overwhelmed with too much information). Take in only what you really need at this point and take one day at a time. I am grateful for each day that I have. We just lost a friend to liver cancer this past Saturday, and four family members over the last 10 years to cancer. I will be praying for you and keeping you in my thoughts. Please keep us informed!

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