Cat results-cyst of uncertain etiology

[vallieanne]

Hi all, I just got back from getting the results of my Cat Scan and Ca-125. My cat results say that my cyst is of uncertain etology, and that a cystic neoplasm is not excluded but is unlikely in light of the TV/US appearance that described it as a unilocular ovarian cyst. There were also some slight discrepancies in the size from the TV/US of 5.2x4.8x3.5. The cat is showing it as 4.5x4.8x4.5 and is attributing this to technical differences.
The CA-125 is 7 which is good as I'm post-men, but as we all are learning this dosn't mean too much as a diagnostic reference. So, my insane doctor who 2 weeks ago wanted to get it out by June after watching it for 6 years said now she dons't think I have to hurry for surgery, but wants me to go see a gyn/ono and get a second opinion. Good thing I already did this and have chosen do go with a different hospital to get it out now anyway. She is so contradictory, she acknowledges that a biopsy is the only way to know for certain if it's cancer, but she said she's now in no hurry.  I told her I am, because I want this thing out asap.
Now to my question, have any of you had results that come back uncertain? She choose to do a Cat scan when the original radiology report of the US said MRI follow up recommended. This new Cat result also said MRi result may be contributory. I got copies of everything and basically said "see ya" to her, and now will bring these results to the GYN surgeon on May 20 when I go get other test results and get my surgery date. They will have a gyn/ono on call for the surgery. Does this sound like it's enough in light of these findings. I thought I'd bee clearer about everything and now I'm just more confused as to what kind of "thing' is sitting on my ovary, and I am really wish it would just get sick of me and go away already.
Thanks for letting me vent
Valerie

[lvfrogs]

Valerie,
I love your idea of the game show! That is so funny!!! I often think that if it were the men having these problems they wouldn't say that it is nothing, doesn't hurt, etc....

The doctors annoy me when they try to tell me how I feel. I have known this body for 51 years and I know how it feels and I know the changes.  Anyway, loved your idea :)

Have a good "day off from the ovary day"!


Jan,
I hope this isn't too personal but from reading your post - do you think they could tell yours was cancer on the TVUS & CT because it was late stage and if someone has early stage, it wouldn't be as obvious from a TVUS?  I hope your doctor visit goes well today and isn't today your birthday too?  So, if it is, HAPPY BIRTHDAY AND A BIG HUG FOR YOU!

Colleen

[Jan214]

As someone with cancer and a member of the cancer forum, I would like to apologize for the situation you innocently stepped into.  The hoopla wasn't over people with cysts being on the forum. It was misunderstood to mean that, but that was not true and it created a bad situation that I hope will be resolved through communication & understanding betweent the two forums.  I think all of us on both forums have a responsibility to make sure that people are guided to the forum where they are most likely to get the answers they need.   If there is even the remotest possiblity that someone could have ovarian or uterine cancer than we want them on the cancer forum getting good advice, help and emotional support.  

As for the cyst forum, hopefully more people will concentrate on cyst research and build the cyst forum up so that all questions about cysts can be answered, not just as they pertain to cancer.  I know what it is like to have chronic cysts though and I am also hoping this will become an excellent resource for women who have such chronic conditions.  I had 5 surgeries to remove cysts, and 12-20 that burst on their own. (They can't always tell how many popped).  This was before I had cancer & over a period of 14 yrs.   I know what it is like to SUFFER with that constant pain.

The problem with the cancer forum was that a few days before you arrived we started getting an influx of people from other forums who have no connection to ovarian cancer or cysts, & they have been posting about pregnancies, depression, suicide, menstrual issues, mamograms etc.  It got to the point where those of us with cancer questions could hardly get a question in for all the irrelevant questions.  Things are still a little tense because these same people seem to be hanging around, writing notes to each other and journals that all show up in the sidebar and some of those topics are upsetting to our forum members.  Not to mention it takes up room that should be used for forum related notes, and journals. We can't figure out why they are here and not on other forums or a chat room.

Oh, there are some new HealthPages (upper right corner) that have several good Pages about types of cysts and other helpful websites and you might want to read through some of that.

As to your question, I have heard of tests coming back with ambiguous results, but i have no personal experience with that.  They were right every time they said it was just a cyst and when I had my TVUS & CT they knew it was cancer.   Perhaps your Dr after seeing the test results figured it wasn't a problem at this time.  I know that Drs tell patients that they can't be certain it is cancer without a biopsy and while that is technically true, it is not the reality.  My onc told me that I had late stage cancer from my TVUS, & CT.  I even had my chemo port put in before my hysterctomy/take everything else out surgery.  Sometimes the tests are ambiguous and they really don't know what it will look like once they get in there which is why it is a good idea to have a gyn/onc do the surgery or at least be on standby.  Good luck to you with this.  I hope it all turns out well.
Jan

[vallieanne]

I think there should be a new game show on called " Cyst or No Cyst" and it should have a panel of Gyn's, Radiologists, & Surgeons who have to look at our test results give a conclusion.  We get to be the show host, and whoever gets it right gets to keep their medical license. The losers would all have to be smacked in the butt with our biopsy reports, while we yelll "We told you something was hurting us".
I think I've gone off the deep end now, LOL, I feel asleep at 7p.m. and just woke up and it's 2a.m.  
I'm officially taking a day off from my ovary today, but will be out here in cyberland watching over all my "cysters"
Let's remember Joelle in our prayers today as she is having her surgery, and Bakirk who is having hers tomorrow.
Good Night and Good Luck
Valerie

[lvfrogs]

Valerie,
How confusing and terrible this has been for you! I am beginning to think all doctors are idiots with all that goes on here. I know it isn't true but you sure hate reading about some of these.  My ultrasound also recommended an MRI but my doctor doesn't think it is necessary.  I am glad that you are going to a gyn/onc.  I think that will be helpful.  Let me know, ok?
Colleen

[Morrowville]

I'm right there with you.  I agree that this original doctor of yours is just too busy to take your situation seriously.

You have done the right thing, taken the matter in your own hands (good, cuz it's your own body at stake here!) and scheduled another OBG/ONC. to have a look & to schedule the surgery.

Like you, I wanted WHATEVER it was out of me.  Mine wound up being a dermoid cyst, a bunch of fibroids and a mature teratoma.  I'm done having kids, don't need the equipment (well, that might be going too far).  So I had a complete hyst/ooph, and everything is gone.  I'm 3 weeks post op and couldn't feel better.  Haven't felt this good in years, frankly.  I think the whole thing was draining me without me even knowing it.

So you're a smart cookie--you stay positive and keep in charge.  My ca125 was 10, and everything was benign.  If I can help you or answer any questions, please do not hesitate to contact me.

Please keep us posted, will you?

hugs,
Morrowville

[vallieanne]

Thanks for answering me, I guess that having the low CA 125 results can't be a bad thing, but because I've read so much on how it dosn't rule out ovca completely thats where I'm a bit confused. I really am hesitant to post on the other board, because the first day I found this site and posted there was the day before the cyst boards came up. The ladies there weren't too receptive about having questions about cysts on their board and I don't want to intrude on them now.
Hopefully, someone from that board may check this one and if they have similar experience, they may let me know.
Nice to meet you
Val

[Sandymac]

Hi,
     This is a little out of my experience area,but hoping someone with more experience in this will see it and post. You may also post on the Ovarian Cancer Forum. Those gals over there have "seen it all" I think. Not that I think you have cancer but it's good to cover all the bases ! They will have good advice for you.
     As far as the CA-125, at least with us being postmenopausal, it is a better indicator according to my gyn. Not 100% but better than the younger gals have. I know she was happy to see mine low.. it was 7 also..So,that may be good news.Keep us posted and by all means see what they have to say on the OVCA forum..

Let us know,
Sandy