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ovarian remnant
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ovarian remnant

I am a 31-year-old who underwent a TAH, LSO when I was 12.  I had two uterus/one cervix with a golf ball sized cyst on the left ovary and a benign tumor on top of one of the uterus' the size of a large grapefruit.  The right ovary remained to avoid taking hormone therapy at the age of 12.  I used extensive fertility medication to hyperstimulate my ovary to make multiple eggs/follicles to be harvested to make embryo's to implant into a surrogate.  Long story short, my husband and I have 4 frozen embroy's that will be used in a few years and not planning to go through the "fertility" process again.  I started to experience ovarian cysts about a year and half ago, just ignored it for a while.  It wasn't an every month kind of thing, but annoying.  I decided to have my remaining ovary removed in March of this year.  I started Estrace 1mg immediately and thought I was doing great until a month to two months after the oopherectomy I started having symptoms of an ovarian cyst....pain and ovulating discharge.  Sure enough an ultrasound showed a small cyst (2.2 cm).  Nothing to write home about, but again very annoying.  A general surgeon was consulted and he and my Gynecologist performed another open laparotomy last month (October).  Both disecting the ovarian remnant off my bowel and abdominal wall.  The pathology report diagnosis was corpus luteal cyst from both areas...abominal wall and my ureter.  I forgot to mention that I was born with one kidney and a stent was put in my ureter for easy disection.  Over this past weekend, I thought I was nuts....I had discharge and extreme pain/discomfort in the same area LLQ pain.  I thought to myself, omg not again.  I had an ultrasound today and by damn there is a cyst.  I'm at wits end and don't know what to do.  I guess stop my HRT and try BCP?  I have no family history of ovarian cancer or any other kind of cancer, but of course the "C" is always what's on people's mind.  Will this turn into cancer if left undone?  Should I just leave it be?  I would appreciate any insight you may have and thank you for your time.....JJ in Pennsylvania


This discussion is related to ovarian remnant syndrome.
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8 Comments
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155056_tn?1333642288
I too have what they believe is an Ovarian Remnant...I do not think that you have cancer, nor will it turn to cancer, but, you should be in contact with a GYN/Oncologist.  They treat many benign conditions.  They also have 3 years additional training over a regular GYN.  They are the experts in all gynocological issues.

Try no HRT or BCPs.....who is recommending you take BCPs???

It has been my understanding and I heard it from a GYN/Oncologist at a lecture, with OvCa it is either cancer or not...it will not turn.  Most Ovarian Cysts are benign....over 90 percent.

There is also another lady that posts, Fungirl...that just had surgery recently for Ovarian Remnants too.

Good luck.
Pam
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282804_tn?1236837191
I have a VERY long history of cysts and numerous cyst surgeries, but none of them every "turned".  The ones that were cancer were not regular cysts to start with.  BCP's can shrink cysts but with your history I would be extra careful.  

Pam I don't mean to contradict you and I don't know how they do it other places but here you can't just call up a gyn onc and make an appt. You have to have a referral from a gynecologist.  There are only 6 gynecological oncologists in Nashville (and we aren't a tiny city) and they have way to many patients to be dealing with women who get hysterical about a few functional cysts. Some small towns don't even have a gynecological oncologist just a general oncologist. They need that prior screening to make sure their time is taken up with women who really need their services. They simply don't have the time to deal with women who have known benign conditions.

Good luck
Jan
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155056_tn?1333642288
Jan - causing trouble are you...hehe...not offended at all...I agree that you just can't make an appointment with a GYN/Oncologist....a referral is required or, with many GYN/Oncologists you can send them copies of your reports and they will decide on whether they want to take on the case.  But calling their office and explaining what is going on is a start.   Usually, ORS is treated by a GYN/Oncologist as it is one of those medical mysteries...ovarian cysts without ovaries......as for taking BCPs, BCPs will prevent ovulation thus hopefully prevent the forming of functional cysts which usually occur during ovulation or something even shrink existing cysts...I don't know about how safe it is to take these pills when you have no ovaries or uterus.  
Gyn/Oncologists are a rare breed, even here in New York City....with the price of schooling and mal practice insurance, there aren't many willing to practice.  I was at a fund raiser this week speaking with a GYN/Oncologist who said that they only get 30 cents on the dollar from insurance companies.
Pam
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282804_tn?1236837191
Pam, I just wanted to clarify, because women call my oncs office all the time and they can get VERY angry. They are always told politely they need a referral and given the name of a gynecologist if they need one but you know that some women can make a mountain out of what they have been told is a molehill. One woman actually came into the office and was screaming at the receptionist (her name is Pam too) that Dr ? didn't care about women and he was just leaving her to die etc.  It was frightening to the new people in the waiting room, as well as myself and I knew better. What was worse is that Pam said it wasn't the first time it had happened!!!!!!
I take chemo with a woman who had everything taken out 30 years ago and now here she is with OvCa at 73 and she was more shocked than the rest of us because she KNEW she couldn't get ovarian cancer. I also have a friend with ORS, she does not have cancer, she takes BCP and just sees a gynecologist.  I guess each case is different, but good to know.  I haven't taken BCP since I was 28 and I don't think about the dangers of taking them.
It is an expensive business that's for sure!!!!!
Jan
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167426_tn?1254089835
Just for the heck of it, I did a little math, Pam, at 30 cents on the dollar  , Leslee's ono would have got 22,500  thousand for her surgery. and the 5 days after care.  Mayo schedules OR rooms per doctor per day, per week,  most onos do about 3 surgeries per week.  But since her Insurance covered the whole thing, then we have the whole 75 thousand  for the one time.  even at 10 years to get the Ono label,  that means by the time they are around 30, they have the potential to make one he-ll of a lot of money , 25 to 30 years of work and then BINGO   retirement and live in style.  Teaching hospitals now pay the interns and residents, not a lot, but enough to live on, after graduating  at around 28, those that stay at the large cancer centers, not only do surgery, but teach, which they are paid for, write books, which they are paid for, give speechs , which they are paid for,  lets face it  the ones that just go to 4 years and get their degree, it will take more than 7 years for them to reach the level of earning that the onos do..  Take a look at the way these doctors live,  that is why they can be so picky about who they take as a patient,  I hated it when my FP  went off of house calls, but she was making enough , she didn't have to cater to the people anymore, they waited their turn to see her, in her time.  It is the specialization that has helped drive up the medical costs, my FP was good enough to take care of almost everything.  I am not saying not to go to an Ono, but I sure don't cry for the 'poor" things.  JUST MY OPINION. lol   If we go to UHC, watch out, waits will be longer and doctors will be hard to find.  Research will get less money and insurance will not cover  it all. Leslee had great insurance  with a million dollar cap, she used almost all of it.   Marty
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272338_tn?1252284004
Jan and Pam,
   You do not know how lucky you are that you live in a bigger city that even has a gyn/onc. In my neck of the woods (down here in southern Illinois, in the middle of nowhere) there is not a gyn/onc for miles. When I had my surgery, my onc sent me to the closest one, which was in Springfield, IL, a 3 hour drive from here. In the past year he has left his practice in Springfield. Now there is not another gyn/onc in the southern half of the state. From what I understand, the closest one is either in Peoria or Paris, I don't remember which, but he is getting ready to retire soon. (At least that was what I was told) So I don't know where I will get sent should I ever need to see one again.

  I think that in some places you can go online and request an appointment yourself with a new Dr like that. But not all places work that way.
   Chris
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155056_tn?1333642288
Marty you are right...it does seem like a heck of a lot of money....but, that money not only goes into there pockets but supports a staff.  I know that at my GYN/Onc office he has a huge staff working there, they have to pay for office space, here in NY that comes at a premium, and let's not forget about mal practice.  As the gyn/oncologist explained to us, she has a nurse on staff that she pays $70K a year just to be available to answer questions, remove staples and do patient intake, on top of her salary is the cost of benefits.  
I don't feel sorry for any doctor, they do not live in poverty, but, I don't think that they live the lives that they used to.  My GYN/Onc got paid about 4K from my insurance company for my surgery, they paid the anesthiaologist (I cannot spell) more then the GYN/Onc.  
Jan - amazing that someone can be so insenstive as that woman coming to your doctors office.  Fear and emotional issues can do strange things to people.
Pam
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135691_tn?1271100723
Speaking as a Canadian, I think doctor's HERE don't get paid NEARLY enough for all they do. Especially when hockey players can make 10 million a season...and still charge $300 for a ticket.
UHC isn't as bad as you may think...I guess though, this falls into one of those "gray" areas....
Becky
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