Potentially suspicious ovarian mass

[PFunk]

I will try to explain my situation as briefly as I can. I am 24. I have multiple cysts on both ovaries. I might have PCOS. I have a high normal to only very slightly high testosterone level. I have a progesterone level that has been measured at 3.2 one month and 0.7 two months later (thus ovulatory and anovulatory intermittently). I had a bilateral lap cystectomy in Feb. The pain in my LLQ went away for 2 weeks, then I was back in the same terrible pain. Since before surgery I have had a 7 cm cystic mass which appears to be an ovarian neoplasm on my L ovary but it was not able to be found during surgery.  It has been on CT's and u/s both before and after surgery. My CA125 test assay was 12. But I am told that mucinous tumors do not elevate CA125. My quantitative HCG was negative. For the past ten months whenever I take a stick pregnancy test it is positive, which happens with a type of mucinous tumor. I was referred to a gyn. onc. who wants to perform an oophorectomy based on the rectal palpatation. I was referred to an REI who says nothing is wrong and my ob/gyn and PCP say that I should listen to both the gyn. onc. and the REI, which is illogical. My LLQ pain continues to progress. I get diarrhea more than I previously.  I am half Swedish and have a family hx of prostate cancer, which is supposed to be a risk factor for OC. Sex in certain positions results in pain that prevents me from standing straight up for about a wk (must use heating pad or yoga to stand straight up) and bleeding as though I am menstruating for several days after intercourse. Advice?

[PFunk]

BTW--It was a pee on stick type test so I don't think that it was in contact with too much urine and I checked them at the instructed interval.  

I have read that certain tumors (I believe germ cell tumors) do that!

[PFunk]

I suppose its possible.  But I don't know, thats why I am seeing the doctors but they never seem to help me out anymore and they each pass the buck to another specialist who does an even less thorough job of investigating than the last doctor.  

My father had a Meckel's diverticulum.  My understanding is that this can be passed to both daughters and sons but is more likely to show up in sons/men.  

I just don't know if this thing would feel so firm if it were just a simple ovarian cyst.

By pulsating do you mean do I feel like its a tumor that might have blood vessels feeding it or do I think that its some kind of arteriovenous malformation or something.  My doc thought it might be the latter and did a color flow Doppler procedure upon which nothing like that was seen.  However, between you and me, I don't think that he even got the mass in view on that u/s.  

[AwfulAdria]

What does your doctor say about the positive pregnancy test? I have no answers for why the dipstick would be positive. I know that if you let some of them sit past the recommended time that they will give a false positive. I would definitely be looking for some answers from the doctors you have or to another doctor? The symptoms you describe are not something you should wait around to see what happens. What do they say about the palpatable mass and does it pulsate? Do you have the results of the MRI? Is it possible this is a loop bowel that you are feeling? Or a hernia that is reducing on its own?

Adria

[PFunk]

Oh additionally, the pathology from my operation on the left ovary indicates that there was no endometriosis, but that there was a hemorrhagic cyst that would account for one of the structures that appeared hyperechoic.  

However, obviously since the mass that was seen on imaging was not visible during surgery, that isn't pathology from the portion that is most concerning.    

[pshnyc]

I stridently disagree with Adria's post.  I was a pre-menopausal women age 39 with no symptoms other than lower left pelvic pain.  My gynecologist felt something during a pelvic exam; a CT Scan and Transvaginal Ultrasound showed a very, very small mass on my left ovary. A CA-125 blood test showed a  minimal elevation at 38 (30 or under is considered normal).  One week later, a gynecologic oncologist performed a salpingo oophorectomy and Stage 1 ovarian cancer was found.  If I had watched & waited, I would not have been diagnosed at such an early stage.  Most women are not as lucky.  Don't watch & wait.  See a gynecologic oncologist - see more than one if you have to.  But don't watch & wait.

By the way - I am curious about who performed your surgery?  It's incredible to me that your tests show a mass, yet a surgeon couldn't find it.  Something's not right....

[AwfulAdria]

I don't see what you would have to disagree with my post about. You had an elevated tumor marker be it 31 or 300 it is elevated and you were appropriately treated. Read the article. Adria RN, BSN,Outpatient Chemotherapy Infusion Coordinator, Certified Oncology Nurse, Certified Emergency Nurse.
and BTW one class until I have my MSN :)

[PFunk]

By the way, suppressive therapy is completely out of the question, so I need other solutions if this simply is a huge multicystic structure that is resulting from PCOS.

When I put my legs all the way behind my head like a contortionist and perform my own internal palpatations I feel a large mass that protrudes downward from the upper left region.  It is a couple of inches in diameter and feels almost cylindrical with a big indentation in the middle.  Simply, from what I am feeling, I imagine that the shape of the mass is something that might resemble one of those kid's toys that is like a donut shaped, elongated balloon, filled with a liquid or gel that when you squeeze shoots out of your hands.  However, this just has to do with shape.  The feeling of the mass is actually pretty firm and if I shift it at all I feel a moderate cramp that feels like a menstrual cramp.  

Also, I have developed a large pea-sized lump just under the skin of my groin area.  

Does this shed any more light on the situation?

[PFunk]

I have seen a gynecologic oncologist who says that he agrees that it is suspicious and thinks that a salpingo-oophorectomy may be in order.  My reproductive endocrinologist says that there is nothing there and that no surgery is necessary and that we should just wait.  My ob/gyn says that I should listen to both of them (which is such a cop out in my opinion) and she is the Johns Hopkins graduate of obstetrics and gynecology, but she does agree that it is disconcerting that it is getting bigger and bigger and more and more cystic looking.  I don't know why she didn't see it except that a laparoscopy is less invasive than a laparotomy and so she might have not been afforded the full ease of viewing and manipulation of organs that might have made the problem apparent.  

All I know is that looking back on my situation, I have had this pain since I was probably 13 years old and it has only increased over time.  When I breathe in I experience a huge cramp and then a couple of decreasingly smaller cramps.  When I exercise it often hurts.  My bowels will be firm one day and then completely liquid the next without any dietary changes or anything.  I also periodically have pink urine.  

While my CA125 was low, my doctor said that isn't really all that meaningful...although a negative predictive value is much more reliable than a positive predictive value.  Also, the weird thing is the pregnancy tests.  The quantitative ones show no pregnamcy but the qualitative ones from the store always show a positive.  CA125 is notoriously bad for predicting mucinous tumors and those tumors that elevate the HCG levels are usually mucinous.  Thus, I am scared and concerned.  

AwfulAdria, do you know why my stick pregnancy tests show positive readings when I am not pregnant?

[AwfulAdria]

Adnexal masses are frequently found in both symptomatic and asymptomatic women. In premenopausal women, physiologic follicular cysts and corpus luteum cysts are the most common adnexal masses, but the possibility of ectopic pregnancy must always be considered. Other masses in this age group include endometriomas, polycystic ovaries, tubo-ovarian abscesses and benign neoplasms. Malignant neoplasms are uncommon in younger women but become more frequent with increasing age. In postmenopausal women with adnexal masses, both primary and secondary neoplasms must be considered, along with leiomyomas, ovarian fibromas and other lesions such as diverticular abscesses. Information from the history, physical examination, ultrasound evaluation and selected laboratory tests will enable the physician to find the most likely cause of an adnexal mass. Measurement of serum CA-125 is a useful test for ovarian malignancy in postmenopausal women with pelvic masses. Asymptomatic premenopausal patients with simple ovarian cysts less than 10 cm in diameter can be observed or placed on suppressive therapy with oral contraceptives. Postmenopausal women with simple cysts less than 3 cm in diameter may also be followed, provided the serum CA-125 level is not elevated and the patient has no signs or symptoms suggestive of malignancy.

This is a good article I think you will find some answers here

http://www.aafp.org/afp/980515ap/drake.html

I would definitely keep a close eye on this and not just set back and wait. The fact that you had a positive pregnancy test would give me pause. Read the article it addresses what you are experiencing.

Adria

[PFunk]

I do not understand it either.  

I am sure that it is possible.  I would not be surprised at all to learn that all of the many specialists that I have seen and all of the imagining technicians and radiologists that read such images are wrong about the juxtaposition of this mass with my ovary.  

However, laparoscopy procedures are notorious for only being used as a sneak-peak means of viewing potential internal pathologies.  

A CT scan is probably more trustworthy than an ultrasound.  

However, I do not know whether or not I have mentioned this but the pain that is experienced during intercourse involves a mass that I can feel being struck in the upper lefthand area of my uterus, followed by an inability to stand straight up and bleeding which exits through the vagina. Furthermore the mass is decidely and highly cystic, which is not true of fibroids unless they have become necrotized through a lack of blood supply, which would result in a much more painful situation than I am currently facing.  

It is true that the gynecologic oncologist has felt a large mass that seems to be associated with my ovary through rectal examination.  

I met with the reproductive endocrinologist who today.  He believed the answer was to put me on birth control for three months on, a couple of weeks off.  However, I convinced him after a great and lengthy debate to at least do an MRI.  

Thanks,

Any thoughts are appreciated.

[MickeyVicki]

I am glad that you insisted on more testing.  I hope the MRI gives you and your doctors more clues on your condition.

[MickeyVicki]

I don't understand why your CTs and  ultrasounds show a 7cm mass before and after your surgery, but that this mass could not be found during the  surgery itself.  Is it possible that the mass is in your intestines or colon instead of on your ovary?