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Help! Anyone with ovarian cysts ....cancer Help! Anyone with ovarian cysts ....cancer

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Unread 01-31-2001, 04:17 PM
Help! Anyone with ovarian cysts ....cancer


I'm looking for other women who have had ovarian cysts and later found out it was cancer. I'm going in for a TAH-BSO on 2-12-01. My ultrasound showed a 10.5 cm multicompartment cyst. My CAT scan showed the same size cyst but fluid filled with a thick membrane surrounding it. My CA 125 was 39. I have had bad backaches for the past few months but no fever. Always seem to be tired but I'm a single mom with 4 adopted kids and work full time so I figure that is normal. I have not lost any weight if anything i have gained quite a bit of weight this past year. True weight gain, not just in the abdomen. However my abdomen seems to be growing disproportionately. There is no ascites (fluid) in my abdomen on cat scan. I seem to have constant pelvic pressure. I'm sure some of these symptoms are secondary to the size of the cyst but I'm starting to get more anxious now. I just need to here from some of you and know how things were for you and what to expect if indeed it is cancer. I've known about this surgery for over a month now and have been doing pretty well but now that it's getting closer I'm getting more nervous. Thanks for understanding. This message board has been a God send for me.
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Unread 01-31-2001, 11:08 PM
Help! Anyone with ovarian cysts ....cancer


Well, first off, I hope it is just a cyst and not cancer, we'll all cross our fingers and pray. Boy, do you ever have your hands full with 4 kids , I hope you'll be able to get some help while you recover.

In my situation, I didn't have any cysts ahead of time, that I know about anyway. My situation was probably pretty typical for ovarian cancer, no unusual symptoms (did have urinary frequency and irregular periods and bowel movements BUT those were my norm), no weight gain or loss, was pretty fatigued though. I had the CA125 done due to extensive family history of cancer (mother, father, aunt). Mine came back at 656 so we pretty much knew ahead of time what they would find. The surgery itself was pretty uneventfull, I recovered quick nicely with no complications. About a month after surgery I started chemo treatments with the taxol/carboplatin combo. I went in once every three weeks, it caused alot of numbness in my fingers but that was handled by mega doses of B6 and caused a bit of joint pain. The taxol portion caused pretty much immediate hair loss but it grew back pretty quickly. In my situation we found that after completing the first round of chemo that the cancer I had was platinum resistant so my #'s immediately went back up, this apparently is not very common. I started the second round of chemo right away with the drug Topotecan, which seems to be taking care of things.

I can't say its been a cake walk but in comparison to the chemo my mom went through this was cake. I have had quite a bit of nausea but no vomiting (TG) but its handled pretty good with a couple of anti-nausea meds.

I don't know if this will help any but thought I would share my story. I didn't quite mean to write a novel however, its kind of hard to explain without it. Please contact me anytime if you need to talk or post here, I'll see it.

Take care and keep us posted on how things are going. Here's some {{{{{hugs}}}} in the meantime.

Unread 02-01-2001, 07:45 AM
Help! Anyone with ovarian cysts ....cancer


Thanks so much for responding to my post. I guess I should just quit reading. I just read Gilda Radner's book written by her husband and her physician. How depressing and frightening. My CA 125 was only 39 so I'm hopeful. Yes, I wil have help with my kids. My parents are actually going to move in for a couple of weeks so I plan on doing absolutely nothing for the first 2 weeks but catch up on some needed sleep and maybe read some good books. Sounds nice but it could drive me crazy as I'm not one who just sits around all day and I'm not used to anyone taking care of me or my kids for that matter. I know I am in the good Lords hand and he is the author of everything and has a plan for my life as well as my family. The part of me that knows that has left this in his hands, the human part of me however has fears of what that future may include. I only pray that what ever it is that I will handle it well. Thanks so much for your prayers. I pray that all will continue to go well with your treatment and that you will have a complete recovery.

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Unread 02-01-2001, 08:48 AM
Help! Anyone with ovarian cysts ....cancer

Hi again Debbie,

I so sorry, I hope I didn't add to your fear. I know alot of the information you see out there is very depressing indeed. I also have stopped reading it because I just felt alot of it was very outdated and there was very little positive information available. Instead I prefer to dwell on some information that one of my Drs gave me, they now refer to the majority of cancers as "cronic illnesses" that will eventually be beat.

I bet it will be easier to let someone help you than you think, I'm also not used to anyone helping me. It wasn't as hard as I thought, your body will override any of your minds urges to do something. It pretty much knows you will need lots and lots of rest.

Anyway, again I wanted to say I'm sorry to have added to your fear. Please remember that these types of cases are not that common. I bet you'll surprise yourself in your ability to handle whateve may come your way, your faith will help so much! Please continue to keep us posted on how you're doing.

Take care,
Unread 02-09-2001, 05:19 AM
Help! Anyone with ovarian cysts ....cancer

My story was a little different. I had poly cystic ovaries all of my life, and had NO symptoms from the cancer. Just felt the same. I did notice an enlarged abdomen, but attributed that to bloating which was also normal for me. I had a CA125 of 237, and had cancer of low malignancy potential in both ovaries, no spreading. I got off easy, just the surgery, no chemo, no radiation. Now I get to have THREE pelvic exams a year, but other than that, and feeling a WHOLE LOT better, I feel all back to normal at 3.5 months. I cannot believe how much good proper levels of estrogen can feel. Think my doc will be able to wean me off ever? Not on your life.

My attitude is that worrying will not make it any better, although worry you will until you get the final pathology report. Try to take it easy is the best I can tell you.

The fact that there is no ascites, and it is a fluid filled tumor both bode in your favor. These are positive signs, both point at non-malignant problems and your ca125 is only barely above the high end of normal. Although this is NOT an accurate test for cancer (but a great marker to watch the progress of it!) the low reading is also a fairly good sign. You may just be seeing normal stuff for non-cancerous problems. Do keep us updated on what occurs, and try really hard to not worry. Keep busy until your date with the surgeon, it helps.
Unread 02-09-2001, 04:47 PM
Help! Anyone with ovarian cysts ....cancer

Hi - just read your message and can really relate. My CA-125 however, was negative. I have a very large ovarian cyst on my right ovary along with a fibroid. I am scheduled for a TAH-BSO on 2/14. Though all tests have shown no signs of cancer my DR says we won't know until we're in there. My cysts has been growing for over a year and has turned from clear fluid to have debris in it. I have been suffering from twisting, stabbing pains on my right side for the past few months. My periods have also been very heavy and lots of clotting though regular. I too have four kids and wonder how I'm going to manage. My DR has been very supportive and positive stating that we've come so far in treatment. During my surgery, an oncologist will be assisting. My fear is waking up from surgery to find out what my life will become. We will survive, many hugs and prayers from me to you.
Unread 02-09-2001, 06:32 PM
Good News

Hey, Listen up!!!

I had serous cystadenomas totally covering both ovaries. Septated cysts with solid parts and fluid around one ovary. When I had my TAH/BSO on January 29 the ovaries looked very much like cancer, the uterus appeared to have tumour deposits and the omentum was thickened and suspicious for cancer. To top it off, I am in the high risk age group (58). My doctor thought for sure she was dealing with Stage III Cancer. She removed the ovaries and sent them for frozen section, then proceded with cancer surgery, meaning she extended the incision around and above my belly button and began removing the omentum after taking out the uterus and cervix. By the time she completed removing 2/3 of my omentum she got word back that the frozen section was BENIGN. She immediately halted the removal of the omentum and did copious pelvic washings, all of which have come back negative. I'm still waiting for the pathology report, but what do you think the chances are of anything serious?

All this is just to let you know that no matter what things look like ahead of time, or even AT the time, it is possible to have GOOD news in the end.

So picture yourself having my story!! It's terrific!
Unread 02-10-2001, 11:57 AM
Help! Anyone with ovarian cysts ....cancer

Though Gilda Radner's story and Gene Wilder's pursuit of the cause of ovarian cancer were terrific in raising public awareness, in fact that was 20 years ago. Treatment has changed a lot over the years and even detection. I had a mystery alien on my left ovary. They persuaded me to have surgery because there was no other way to tell. Turned out the path did show that there was this noninvasive fibroma-thecoma. The recommended treatment? Surgery. Case closed. Like Maggie I get to sit in my doctor's waiting room three times a year and get CT scans--mmmm those barium shakes but other than that I've only had to deal with the normal healing from a hyst. So, you're taking the best approach. Trust in God's plan. I have to say the whole experience has been like a college course in life. I've learned a lot about myself and the other people in my life.

You might line up someone to help out some after the two weeks unless some of your kids are quite old. It really takes 6 to 8 weeks before you have much stamina and 8 months to a year before the fatigue and swelly belly go away. So, you'll not be lifting laundry baskets for a couple of months or lots of groceries. Remember Kathy's motto for this place--Pamper the Princess!
Unread 02-10-2001, 08:31 PM
Help! Anyone with ovarian cysts ....cancer

Trish, did you ever think about that barium drink? They are doing a CT scan on PELVIC organs, that is (minus girly guts) bladder, bowel and MAYBE as high up as kidneys. Ok, them make you drink the barium. Ever eat corn and have it come out in the same condition it went in? How many HOURS later was that? That is about your personal motility rate for anything making it's way to your colon, which is what they are REALY looking at. But as SOON as you drink it, in for an IV, and off you go to the CT machine. Less than 30 minutes after you finish drinking it. Did you ever ask WHY you are drinking it? I have, and have as of yet not gotten a satisfactory answer. There is NO WAY that the barium can make its way to what they are looking at in this period of time. I think that they do it because they don't know any better.

I had my gall bladder out 25 years ago, before surgery they did an ultrasound. MADE me do the gallon of water and hold it to do an ultrasound on my liver/gall bladder, because that is what they were used to requiring for pelvic ultrasounds on pregnant women (pretty new technology at that time, now they all KNOW it is only SOP for PELVIC ultrasound.) 2 years ago I went in for a ultrasound on my stomach/pancreas area. For that, they made me go from midnight til 3pm with NO food or water. I am a diabetic, and the water was a killer. My blood sugar was crazy, and I was CRAVING water. I asked the radiology clinic numerous times about why I could not drink. "Just because" (Standard procedure) During the procedure, I asked the technician, his response: "Because if you drink, it will screw up the picture of your gall bladder" (I laughed now) Several minutes later he was saying "Hmmmmmmmmmm" I asked him what that was all about. He said: "I can't find your gall bladder, you haven't by any chance had it removed have you?" (his wand was sitting right on top of what is a very obvious gall bladder scar, 11 inches long!) Go figure.

I think before my next CT scan, I am going to INSIST on knowing exactly why I am drinking the barium when it obviously (to me anyway) will not aid in viewing my colon and intestines in that short of a time frame.

I think that the medical community has become so robotic in standard proceedure that they don't think, and they resent someone who questions their authority.

Just my 2 cents worth.
Unread 02-11-2001, 12:03 AM
Me too

I had my left ovary removed Dec. 11 because of an ovarian cyst. It looked okay (CA125 normal) but eight days later the doctor called to say they'd found a small malignancy. He advised TAH and staging operation. I decided I didn't want a hysterectomy unless the uterus was cancerous. I had the staging operation Jan. 30. I signed for a hysterecdtomy if necessary. Fortumately my uterus wasn't malignant in the preliminary pathology, so I didn't have a hysterectomy. However, the staging operation took five hours and I'm plenty sore and have many of the same miseries of the hystersisters. I'm waiting for Feb. 19 when I get my pathology results. Right now the oncologist says it's 90 per cent sure it's stage Ia, but of course I wouldn't have had this painful operation if it weren't for the other 10 per cent.

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