Other borderline ladies around?

[somethingroyal]

Hi,

I was reading a thread from Nov 2009 by gls on this topic, and since I am new to the page, I am not sure how to connect with all of the individuals who posted there. It was very informative and I felt immediately comforted reading it.

I am 36. In early April 2010, my gyn found two small cysts on my right ovary during a routine exam and ordered ultrasounds and a CA-125 because I lost my beloved mother to cancer of the fallopian tube. (I don't have the exact numbers, but I will get copies of that soon.)  The CA-125 was elevated so he ordered a CT scan and recommended a laparoscopy.  He removed the right ovary and fallopian tube, and at the time thought it was endometriosis, but the pathology came back questionable, so it was sent to Johns Hopkins for a second opinion.

Johns Hopkins report said that it is an atypical proliferative endometrioid LMP (borderline) tumor. I obtained the pathology reports. I was referred to a top gyn-onocologist who I saw last week. He said that he was leaning towards monitoring it by ultrasounds and repeat CA-125 scans every 3 to 4 months.  He said that at my age he does not want to take any options away from me, which I appreciate.  

I was confused when I heard that because when I was referred to him by my gyn, my gyn said that the next step would be to take biopsies of other ares and do abdominal washings. He explained this would be to determine the staging.  Now, I recognize that the gyn who explained this is not an oncologist, but still.

I decided to do more reading on borderline tumors to quiet my mind.  I understand that the micropapilliary behaves much more like a cancer than do some of the other types. I have read mostly about ladies with borderline serous tumors.  

I have posted on the Inspire board, and all who replied to my post recommended I get a second opinion.


This discussion is related to Calling all "Borderline" ladies.

[Heffmeister]

A related discussion, reoccurance of  borderline/ low malignancy potential  in bowel ;-( was started.

[Heffmeister]

Looks like I am just getting 6 monthly physical examinations. Didn't know ca 125 was of any use if you don't have ovaries?

[chelan3]

Hi, I had follow ups every 6 mos for 5 years.  It included an Ultrasound and regular gyn exam.  Even though my CA125 was slightly elevated prior to surgery it was deemed not an indicator for me because it bounced up and down.  So after the first year I never had another CA125 drawn.  Although, just for kicks I may ask my doc to do one at this years physical.  I also had a yearly CT scan.  After the 5 years I was given the all clear and only have regular physicals with my family dr.  
Debbie

[Nerdymom]

I'm another borderline lady.  Complex cysts found by ultrasound lead me to have a laparoscopic cystectomy last october.  Results from that surgery revealed serous borderline tumors on both ovaries and an implant near the right ovary and positive abdominal washings.  The tumors were non-micropapillary and the implant was non-invasive.  I was sent to a gyn-onc.

Gyn-onc did full debulking/staging (full hysterctomy, oophorectomy, omentectomy, appendectomy with lymph node dissection (this is done via laparotomy aka open incision).  That surgery found just a little remnants of tumor on my right ovary that the first cystectomy didn't remove, but no further disease. Stage 2c borderline serous, non-micropapillary.

I'd be very hesitant to not proceed with the normal debulking procedures.  Since this type of cancer does not respond to chemotherapy, the best form of treatment is surgical removal of all disease.  It's the best chance of being 'cured'.  Please let us know what your second opinion tells you.

As for follow-up, I'm having exams every 3 months along with CA 125.  I'm not sure how I feel about this.  I've never had a PET or CT scan, just ultrasounds.  I wish there was something better to help keep tabs on any recurrence.  My CA 125 wasn't abnormal before my surgeries and several different pelvic exams didn't pick up anything... was the ultrasounds that found it.  Not sure how useful ultrasounds are after everything (uterus/ovaries etc) have been removed.  What follow-up are the rest of you borderline ladies getting?

(Fyi I'm 38, 2 kids with family history of breast and ovarian cancer)

[gls2824]

Hi.  I'm glad that my Nov 2009 posting helped you.  When I was diagnosed, I had to do a lot of research to get information since borderline tumors are not the norm.  My doctor said I was lucky because these kinds of tumors usually occur in younger women (I was 54 when diagnosed).

I'm glad to say that I've been released from 3-month check-ups and have now graduated to 6-month check-ups.  I've been fine and am confident I will continue to be fine.  And damned lucky!

Good luck.  Sounds like your doctor knows what he's doing.

[Heffmeister]

I got my second opinion last week. They are reviewing all the histology slides and operation notes (icluding those from an appendix removal 16 years ago) to see if the orginal diagnosis and staging is correct. If it is all correct they think it's resonable to keep my remaining ovary until menopause but have 3 monthly ultrasound scans on it. I'm still having a hysterectomy next week but that's more to do with an unrelated problems with pre-cancerous cells in the cervix which have re-occured.

The specialist gyn onc agreed with my research (and John Hospkins website info) that a probably diagnosied mucinous cyst of the ovary (i.e that was orginated from ovary not gastro instestinal tract) is by definition benign.

Good luck to you all. My second opinion was definately worth seeking and even better was seen ery quickly on the NHS so was free :-)

[somethingroyal]

thanks to all who posted.  I have decided to get a second opinion just to be on the safe side, and also to be able to ask questions after having some time to read and think.  (I was a bit too nervous at the first gyn onc appt.)  

I guess it can only be useful to have another expert opinion and have more information.      

[chelan3]

Borderline tumors used to be very rare.  I hear more and more about ladies being diagnosed with them.  As a result of them being rare I think many gyn don't know much about them.  Your gyn-onc is the expert here.  If you're concerned, ask around and see if you can find a gyn-onc that has dealt with a lot of these type of tumors and get a second opinion.  I thought after I was diagnosed with LMP serous borderline stage 1 that I had read a lot about borderline ovca but they are really tricky and I believe demand more than one opinion on treatment, follow-up as well as pathology.  

Good Luck.

[lsindelar]

My understanding is that the procedure for staging is done after childbearing is complete so it sounds your gyn-oncologist will closely check you for evidence of tumor recurrence in the meantime.

My ovaries were the size of grapefruit with multiple bilateral cysts (one greater than 6 cm), CA-125 elevated, and abnormal bleeding. I also had some symptoms of ovarian cancer and am 44 so they wanted to just go ahead and do the hysterectomy (remove ovaries, tubes, cervix, and uterus). They found low malignant potential ovarian tumors on pathology so also removed my appendix, omentum, and inserted a chemotherapy port. When the samples were sent to (also Johns Hopkins I believe) LMP ovarian tumors were verified, and also verified that I did not have the more invasive micropappilary type so I did not have to have chemotherapy. I was stage 2c (both ovaries affected, with implantation in the pelvis, and positive pelvic/abdominal washings). I also understand that most LMP ovarian tumors are discovered at stage 1. Since mine were more advanced, and I was having hot flashes from surgical menopause, I was given hormonal treatment with megace (a progestin as my tumors had estrogen receptors). You might want to ask if your tumors had estrogen and/or progesterone receptors). I also had a procedure where they used my chemotherapy port to place a radiopharmaceutical (P32) into my peritoneum.

I am assuming that your gyn-oncologist, like mine, reviewed your imaging and can verify that only one of your ovaries appears affected. So, that would make your case very different from mine. It is good that you are being followed by a gyn-oncologist.

Good luck to you! I also learned a lot about these types of tumors on this discussion board. The Johns Hopkins website has good information on borderline/low malignant potential ovarian tumors.

[Heffmeister]

Hi, I had a borderline tumor removed in April this year. It had grown rapidly to football size and then ruptured. The symptoms had been disguised because I was pregnant at the time but lost the baby 3 days before the surgery. Mine was a mucinous cyst. I had a laparotomy done so had staging at the time of the surgery. I'm 32 and have 2 children so am most likely going to have a hysterectomy next month- this is also because I have pre cancerous cells in my cervix that have re-occured twice. I'm trying to get another opinion by a professor to see if it would be "safe" to keep the other ovary at least for a while to prevent the need for HRT.

I would of thought they would of wanted to stage you but then I'm no expert. This borderline thing is pretty confusing!