LMP Tumor Questions

[butterfli325]

On 7/16 I had laparascopic surgery to remove a right side tennis ball sized cyst.  Before surgery it was believed to be a dermoid.  The cyst was actually classified as a peritubal cyst and in the process of trying to peel it out of the ligament, it was punctured.  The cyst "walls" were cut out and sent off to the pathologist.  The report came back as "serous adenofibroma with areas of serous tumor of low malignant potential" and I was referred to a gyn/onc.  I had asked to have the surgery recorded and in viewing that noticed that there were some little bumps on the ovary still after the cyst "wall" was removed.  Wall isn't exactly the right word but I don't know how else to describe it - the ovary itself was not touched but just the part extending from it.  These little bumps were inside the cyst but on the ovary itself.  Anyway, I went to see the gyn/onc on 8/13 and she viewed a little piece of the surgery and said that she believes those bumps were removed. I kept telling her no, what we are looking at now is the ovary itself after the "wall" had been removed - the "wall" was laying off to the side at this point.  She kept telling me that she thinks it was removed.  She would have been able to see that it wasn't with viewing more of the surgery.  She finally did say that the only way to find out for certain is to do another surgery and that we should just wait and do the follow-up appointments to see if anything starts growing again.  She flat out told me that this is NOT cancer and that many medical oncologists confuse it as such but gyn/onc do not.  She said that is can spread but even if it does and enters the lymph nodes, they generally aren't too concerned - because it is still benign.  Basically these are more of a oddity than a problem causer.  I left her office feeling alright - we had been there for more than a few hours waiting and I think at that point I was just ready to get out of there.  Now I am starting to question her answers and don't know where to go from here.  I have a follow-up exam, transvaginal u/s, and CA-125 scheduled for 10/23 with my regular gyn. but am concerned because I have started feeling similiar pains (dull, achy) on Friday.  Am I being overly paranoid?  Would the gyn/onc. not have felt something since she did an exam on Monday if there were anything to be concerned about?  Do I call the reg. gyn and see if I can get checked out or just wait until the 10/23 appt?

Sorry this is long.  I'm just confused at this point.  

[Casey06]

Hi, I was wondeing how you were doing.

I had an LMP tumor, but fortunately my surgeon was a gyn/onc and treated like cancer and removed ovaries and sampled lymph nodes etc.

I am very interested in hearing from other LMP ladies and how they are doing.

[butterfli325]

Very frustrated today... Came home with extreme pain in right side going to my back.  Called the dr's office and nurse thought the cyst may beginning to rupture, told me to take IB 800 and would check with the dr.  Called back and said that Dr. does not think it has anything to do with the cyst and that I was just getting ready to start a "really nasty cycle"  I told her that it was not cramps and had never experienced anything like this in my life - surgery pain was not even this bad.  About an hour after intense onset of pain, I laid down on my right side and it seemed to start to go away, fell asleep for about 3 hours and woke up with pain completely gone.  Does this sound like a rupture at all?  Nurse is supposed to call back in the morning to check on me.  Still don't have the report back from the 29th u/s as they are waiting on the oncologist to look over still.  I'm just getting very frustrated with them during this process and don't really know where to go from here.  I plan on expressing my concerns when the nurse calls back but don't know if that will really help the situation.  I'm irritated that I still don't know what they are thinking about this new cyst and also irritated that they gynecologist suggested the pain wasn't cyst related as it was only on my right side, not crampy feeling, no kidney feeling (infection or stones - have had those before and this pain was lower than that).  I feel like they just assume that I don't know my body and aren't really listening.  Just needed to vent.  Sorry.

[Tybear]

LMP tumors are such an odd thing...I think if you put 10 gyne/onc's in a room, and asked them how they would treat it, you'd get 3 different answers. Some don't consider it cancer...some consider it a low grade cancer. It can and does recur, like regular cancer. The problem is, when a tumor is so slow growing (grade 1) , as LMP tumors are, chemotherapy doesn't work - it works best on actively dividing cells, like a grade 3. I have MPSC, which my doctor refer's to as the aggresive-cancer version of an LMP tumor. The clinical trial I am enrolled in right now is titled "A phase II study in Platinum resistant epithelial ovarian tumors and micropapillary/borderline (LMP) ovarian tumors". What you have, while it isn't as serious as cancer, it can still cause many problems and should be watched very closely. There are no options for women like you right now, in terms of medicine/chemo to prevent recurrence (hence the clinical trial I'm in...) and surgery is usually the standard treatment. Recurrence is something that does happen, and I think that's why trials like the one I'm in are in the works - doctor's know that the need for medicine to treat LMP tumors is there.  It sounds as though maybe your surgeon wasn't as complete in removal of the disease as he sould have been. Unfortunately, you should have been sent to a gyne/onc to have your surgery done, not a regular gyne. I'm not sure what they will do for you next...more surgery or watch and wait. I'm sorry you've had this set back, but maybe now is a good time to jump on the internet and do some research about what other women with LMP tumors do with recurrences.
Good luck,
Becky

[butterfli325]

Just a follow-up... I knew I wouldn't be able to rest until getting the pains checked out again even though I kept trying to tell myself that I was being overly paranoid.  The reg. gyn said it wouldn't hurt to get another ultrasound.  Went back today for another and sure enough the crazy thing is back -- already!  The tech could tell me that this is not a simple cyst, is an inch already (just tiny bumps were remaining after 7/16) surgery, and has debris.  Has anyone heard of or experienced LMP tumors coming back this quickly?  Do you think it is because of the "bumps" that were left?  I'm starting to get worried that maybe this is something more than just that alone.  Also, when I met with the oncologist on 8/13 - my CA125 was 28.  That is the only time I have ever had that taken, next is scheduled for the 10/23 appt.  Ultrasound results have to be sent off to be officially read and then we will see how to proceed from there.  Just feel like I am starting all over again.

[rmarie]

You are fortunate, you have been told that you do not have cancer.  You have a tumor of low malignant potential and they are going to watch you carefully.  I take it that you they did the surgery they did to preserve your ovarian functioning, because you are young.  Your Gyn was good in referring you, the Gyn/Onc is going to check you again in October, Maybe the exam irritated some tissue, you surgery wasn't that long ago.  I would focus on the good news, it is not malignant, it was a benign tumor, it could be a problem in the future, however it sounds as if it would still be benign.  You are a lucky lady.