Borderline Ovarian Cancer

(child’s voice) there once was a time whenwe were truly free -- free of worry... free of fear... far from doubt. that is strength. that is power. that is fearless. "second opinion" is funded by blue cross blueshield, which is committed to improving healthcare accessibility and supporting more affordablecommunity clinics where care is limited. blue cross blue shield. live fearless. (announcer) "second opinion" is produced inassociation with the university of rochester

medical center, rochester, new york. (dr peter salgo) this is "second opinion,"and i'm your host, dr. peter salgo. today we're joined by special guest, rutasankilis-biteman. ruta has had a long and frustrating healthjourney, a journey that has impacted everything in her life. she's here to tell her story and find someanswers. (ruta biteman) in my late 20s, i would say,i had such bad pain one night that i passed out from it, and i ended up going to the e.r.,and it turns out i had a cyst that had burst. (dr lisa harris)it was on your ovary?

(ruta biteman) yes. (dr peter salgo) so you had a ruptured ovariancyst. thanks so much for being here, ruta. i'm delighted you're joining us and sharingyour story with us, and i want to get right to work. so, first thing we've got to do is introduceyou to our "second opinion" panel. they'll be hearing your story, by the way,for the first time. there, dr. tamer seckin from lenox hill hospital,northwell health... and "second opinion" primary care physician from our lady of lourdes memorialhospital, dr. lisa harris.

welcome to you both. (dr lisa harris)thank you. (dr peter salgo) now, back to you, ruta. i understand you were athletic, a gymnastwhile you were growing up. you had a pretty happy childhood, and thenyou began having odd pain. (ruta biteman) basically, it was cyclicalpain. (dr peter salgo) what does that mean -- "cyclicalpain"? (ruta biteman) period pain. (dr peter salgo) okay, just be clear aboutit.

(ruta biteman) a little more extreme thanwhat i thought it should be. (dr peter salgo) okay. (ruta biteman) unusual pain in my side, belowmy belly button, burning, searing -- pretty excruciating. (dr peter salgo) did you have pain with sexualintercourse? (ruta biteman) absolutely. (dr peter salgo)okay.did you finally see adoctor about it? (ruta biteman) i did -- a few. (dr peter salgo) and what did they tell you?

(dr lisa harris) can i just jump in with aquick question? how old were you with your first period? (ruta biteman) i was 16. (dr lisa harris) and how long after your firstperiod did you start noticing this pain, or was it with the very first one? (ruta biteman) it was probably 18, 19. (dr tamer seckin) about two years into this. (dr lisa harris) okay. (dr peter salgo) why did you ask that question?

(dr lisa harris) because it's important toknow if this was related to the very first period or if this is something that developedalong over time. it kind of helps with the differential. (dr peter salgo) what about the doctors yousaw? what did they say to you? (ruta biteman) nothing. basically, it's just part of being a womanand to take some tylenol or whatever and just deal with it. (dr peter salgo) and were these women or men?

(dr tamer seckin) they didn't ask you aboutyour g.i. symptoms, anything like that? (ruta biteman) no. (dr tamer seckin) like any discomfort, abdominaldiscomfort that happens -- nausea, maybe throwing up at times, missing school? no. (dr peter salgo) what else did these doctorstell you? did they give you any medication? did they give you any life suggestions? anything?

(ruta biteman) no, at that point, they didn't,and i would say -- i got married at 22. a few years later, we started talking abouthaving children, and the pain was continuing, and i was told to maybe take the pill to basicallysubside some of the symptoms i was having. (dr peter salgo) then, i understand at somepoint, you had really bad pain, even compared to the pain you'd been experiencing. what was that? in my late 20s, i would say, i had such badpain one night that i passed out from it, and i ended up going to the e.r., and it turnsout i had a cyst that had burst. (dr lisa harris) mm-hmm.

that was on your ovary? did they investigate this pain that you passedout from? they give you tests? what'd they do? (ruta biteman) yeah, basically it was thatconclusion -- i had a cyst, and at that point, i thought, well, maybe i was free from allthe pain that i had been having up until that point, and so i was referred to another doctor'cause i had told them i wasn't really happy with my situation on the physician side ofthings, and i did end up seeing somebody else and explained to her in great detail someof the symptoms, the pain, as well as bleeding

in between. (dr lisa harris) that was another questioni was going to ask you. so the pain, did it start before your periodat all, a couple of days before, or was it just with the onset? (ruta biteman) before. (dr lisa harris) and that was intensifying? (dr lisa harris) and now you're having bleedingin between periods. (ruta biteman) correct. (dr lisa harris) and how long were your periodslasting?

(ruta biteman) four or five days. (dr lisa harris) and had they increased orchanged? (ruta biteman) they changed. (dr peter salgo) what did they tell you waswrong? they said something was wrong. (ruta biteman) well, after i saw the doctorthat i was referred to, she ran a battery of tests because i had told her i wasn't gettingany relief, the pain was starting to come back. i really had a lot of faith in her becauseshe was listening, and i could relate with

her. (dr peter salgo) did she give you a diagnosis,finally? (ruta biteman) she did. i got that phone call, and –(dr peter salgo) and said what? (ruta biteman) that i have endometriosis. (dr peter salgo) endometriosis. and i'm going to stop in just a moment andget some definitions here, but what did she tell you to do about it? (ruta biteman) she said that my only courseof action was a hysterectomy.

(dr peter salgo) all right, stop. she wanted you to take your uterus out, andyou wanted children, and you didn't want birth-control pills, and you were in pain. let's go back. endometriosis. that's a diagnosis, finally. what is endometriosis? either of you can just jump at that one. (dr tamer seckin) endometriosis is presenceof the endometrial-like tissue.

(dr peter salgo) okay, now the endometriumis the lining of the uterus. (dr tamer seckin) the lining of the uterus,that causes the menses, menstruation... (dr tamer seckin) ...is displaced outsidethe uterus. (dr peter salgo) so this tissue that swells,then sloughs off and bleeds with every period --(dr tamer seckin) estrogen-sensitive inflammation, essentially. (dr lisa harris): did she tell you where yourendometrial tissue was? (dr peter salgo) 'cause this tissue belongsinside your uterus. when it's outside your uterus in places whereit doesn't belong, it can cause pain.

(dr tamer seckin) exactly. it is dislocated off to the offside of theuterus, and the body strives to kick it out, eliminate it. (dr peter salgo) so it causes inflammationand scar tissue, and you brought some pictures. what are we looking at over here? just describe it. (dr tamer seckin) this is called the peritoneum-- very shiny, beautiful texture. (dr peter salgo) that's the lining insideyour abdomen. (dr tamer seckin) the lining of the insideof our abdomen, where the bowels move freely

and move the content all the way down. it's clear, smooth, with no problem. just behind the uterus, this is where thetube and ovary -- when we lift tube and ovary, this is what we see there. (dr peter salgo) and that blue color is notnatural. that's dye that's been injected. (dr tamer seckin) i use this in my proceduresto bring the texture of the peritoneum. (dr peter salgo) so now the next picture showswhat? (dr tamer seckin) the next picture --(dr peter salgo) look at the difference.

(dr tamer seckin) you see the difference -- theearliest scar-tissue formation, defects on the peritoneum, and way up there at 1 o'clock,there's a main lesion, but there's more lesions here we can't really see. under a microscope, you can see. (dr peter salgo) and i think we have one morepicture. (dr tamer seckin) that holes have -- thisis more advanced form of the peritoneal destruction with inflammation. (dr tamer seckin) one more picture. (dr peter salgo) and one more picture.

(dr tamer seckin) and this is how it is. these are grape leaves, like early lesions. every month these will break and bleed. (dr peter salgo) and hurt. (dr tamer seckin) and hurt. underneath, there are blood vessels that feedsthese lesions with nerves. every time it bleeds, the body perceives it,and generally a fatigue feeling, messy feeling, never feeling right, generalized pelvic pain,constipation -- you name it. these are covering the bowels, bladder, allmultiple organs, and nerves in the pelvis.

(dr peter salgo) but i heard you say somethingvery important. it covers the bowel, covers the bladder -- canbe in many different places. (dr peter salgo) just removing her uterusisn't going to fix this. (dr lisa harris) it's not going to fix theproblem -- not at all. (dr peter salgo) so, she's had a tough time,and part of her tough time is because she got some crummy advice, and i think that'sbecause doctors don't really appreciate this disease. what's the doctor's responsibility here?

(dr tamer seckin) well, you're not alone likeyou, so many women, millions -- how about 10 million in america? -- major cause of pelvic pain, major causeof infertility and hysterectomy, many unnecessary surgeries. so in this context, early diagnosis, earlydetection, and proper management is important, and doctors, mothers, we all have responsibilitytowards public health. (dr lisa harris) i wanted to throw in there,that means that medical education needs to begin with medical school, because this isimplications for pediatrics -- not just family practice and obstetrics and gynecology, becausein peds is when we are starting to see with

the onset of your period, and if pediatriciansare not recognizing the symptoms to refer early, diagnose early, you'll suffer unnecessarily. (dr peter salgo) wrong therapy, wrong conceptof the disease. you didn't do that. (ruta biteman) oh, i did not. (dr peter salgo) oh, good for you. (dr lisa harris) and she did not recommendbirth-control pills, or were you already on the pill? (ruta biteman) at that point, i was alreadyon the pill just to try to alleviate --

(dr lisa harris) some of the pain? (ruta biteman) yeah. (dr peter salgo) so, instead of having thissurgery, which, as it turns out, wouldn't have worked, what did you decide to do? (ruta biteman) i turned my dismay into -- itjust turned into anger, and i didn't know what endometriosis was. i had never really heard about it. i started reading, educating myself, empoweringmyself, got really healthy, changed my lifestyle. (dr tamer seckin) did you have leg pain withperiods radiating to your leg or back?

(ruta biteman) back. (dr tamer seckin) back. (ruta biteman) radiating to my back, for sure. (dr tamer seckin) very important. (dr peter salgo) what else happened in yourlife as you went along this way, empowering yourself? (ruta biteman) well, i had put the idea ofgetting pregnant out of my mind and focused on just myself, and next thing you know, iwas pregnant, so... [ laughs ](dr peter salgo) so, you're pregnant, endometriosis

-- you didn't have the hysterectomy. (ruta biteman) right. (dr peter salgo) you weren't on the birth-controlpills. it's kind of a shock, i'll bet. (ruta biteman) it was a pleasant shock. (dr peter salgo) with that pleasant shock,we're gonna stay right where we are and take a very brief break. we got a lot more ground to cover, but firsthere's this week's "myth or medicine." (announcer) endometriosis can be a chroniccondition that can cause severe pain before

and during menstruation. since menopause is defined as the absenceof menstrual periods, does this mean menopause can cure endometriosis? is this myth or medicine? (dr amy benjamin) menopause cures endometriosis. that's mostly myth, and i'm going to tellyou why. my name is amy benjamin. i'm an assistant professor at the universityof rochester medical center specializing in minimally invasive gynecologic surgery andchronic pelvic pain.

menopause occurs when women stop ovulatingand their ovaries stop making estrogen. when that occurs, they stop having periods. so if they have endometriosis, they will stophaving pain related to periods. additionally, without estrogen, the endometriosiswill no longer continue to grow, however, it will not necessarily go away. in particular, if women have deep lesionsfrom endometriosis, or cysts on their ovaries from endometriosis, these will not typicallyresolve on their own. many women who have endometriosis that causeschronic pelvic pain have other causes for their chronic pelvic pain, and these willnot necessarily improve or resolve once they

go through menopause. and that's medicine. (announcer) not sure if it's myth or medicine? connect with us online. we'll get to work and get you a second opinion. (dr peter salgo) and we're back with rutabiteman. thank you for staying with us. you've got endometriosis. you were ignored for a while, then basicallytold to have a hysterectomy, which wouldn't

have worked. then you got pregnant despite all the warnings,and so that was a shock, huh? (ruta biteman) it was. (dr peter salgo) pleasant one. (ruta biteman) very pleasant. (dr peter salgo) before we go into that, ijust want to ask a quick question because i know our viewers are wondering about this. there's all of this tissue which belongs insidethe uterus that's outside the uterus. does it get there during the course of yourlife?

does something move it around or were youborn with this problem? do we know this? (dr tamer seckin) well, that's one of thebiggest dilemmas, but we have an idea where that comes from. (dr peter salgo) where does it come from? (dr tamer seckin) it probably comes from themenstruation regurgitating backwards. it's reverse cell trafficking. instead of going through the main door, theyare going to the fire escape in the back. (dr peter salgo) so some of the cells escape,and they set up shop elsewhere where they

don't belong. some of them escape there and get implantedthere. the body accepts it. somehow they fool the body. (dr peter salgo) all right. while you were pregnant, what happened toyour symptoms? (ruta biteman) oh, i felt great. (dr peter salgo) and the reason for that isshe wasn't cyclic, right? so these cells that were elsewhere in yourabdomen, they weren't getting any signals

to get bigger, get smaller, bleed and hurt. (dr peter salgo) right? (dr tamer seckin) but i wanted to ask youa very important question. (dr peter salgo) go ahead. (dr tamer seckin) did you grow distrust todoctors? is this one of the reasons you didn't wantto go because they will tell you something you wouldn't like? (dr tamer seckin) and your experience wasbad with doctors before? (dr lisa harris) i think the unfortunate partis that you had a trusting relationship with

a doctor who then gave you some bad advice,so -- the one that said your only course of action is "x," "y," "z," and i think in patientsdeveloping those types of relationships, if you have a good relationship, and we tellyou something off, come back and tell us -- "you know, that didn't make sense to me. i don't understand that, and i don't reallybelieve that answer. can you give me more information or what else-- there has to be something else out there." (dr lisa harris) and maybe you could haverepaired that relationship at that point. (dr peter salgo) let's go a little fast-forward. baby okay?

(dr peter salgo) congratulations. (ruta biteman) thank you. (dr peter salgo) that's wonderful. after you delivered, and you started yourmenses again, what happened to your endometriosis symptoms? (ruta biteman) i would say the first yearor two, it was -- i didn't notice any symptoms, and then it started kicking back in. so let's talk just a little shop here, ifwe can, about endometriosis. women who have it find the pain unbearablefor one reason or another, don't respond well

to medication. is there a cure for endometriosis? can you make it go away forever? (dr tamer seckin) another dilemma in endometriosis. "cure" is not the word we like to use. however, with endo, we're likely to use "highlytreatable disease." endo's treatable disease. (dr peter salgo) well, how do you treat it? (dr tamer seckin) unfortunately, you haveto treat it -- you have to diagnose probably

early, and the treatment is by seeing it andby removing the disease in its earliest forms. (dr peter salgo) let me clarify what you justsaid. when in doubt, cut it out. it's a surgical approach that you say. (dr tamer seckin) absolutely. (dr peter salgo) there are no drugs to makeit go away? you can damp it down. (dr tamer seckin) it is one of the most misdiagnoseddisease and -- (dr peter salgo) why is that?

(dr tamer seckin) well, it comes with thedilemma. the topic is around the period. there's misconceptions about periods. like she named it a curse, which is a greatway of naming it, but it's considered to be normal to have pain, and she's probably lookedat someone who's making up, trying to find excuse other things in your life while you'regrowing up. it's the common things that the kids face,and they don't want to talk about it. (dr lisa harris) i'd like to ask you a question. so, wouldn't you think that some physicianswould have prescribed oral contraceptives

just to try to dampen some of the symptoms? and one of the things is, usually it comeswith other symptoms that's overlooked -- usually g.i. symptoms. (dr peter salgo) but the logic is -- i thinkwith lisa, if i may interpret what she's asking for our audience. if you can stop the cycling, as happened duringyour pregnancy, then these cells don't get big and rupture and bleed, and then the paingoes away. (dr tamer seckin) it's not about, really,surgery right away. it's timely intervention when it's necessary.

however, birth-control pills in the form ofcontrolling the period, the amount of it and making them regular and make the in somewhatcontaining the endometriosis in a cage. (dr peter salgo) can you surgically get everylast cell that's causing her trouble? can you get it all out? (dr tamer seckin) well, this is where thetechnical difficulty of endometrial surgery is. it's very difficult to get every cell microscopically,but, in general, doctors or surgeons who are trained, particularly for endometriosis, theycan see the lesions in its more occult, more atypical form.

(dr peter salgo) so you can reduce the burden,the total cell burden? usually lesions are described as pigmentedlesion. however, maybe the majority of the lesions,maybe over 90 are non-pigmented. they come in atypical forms in every color,and they're occult and they're very hidden, and they hide in the most discreet cornersof the pelvis. you really have to lift every stone to findit. (dr peter salgo) this sounds like painstaking,frustrating surgery. a good endometrial surgery does not last lessthan three hours. (dr peter salgo) at least three hours.

(dr tamer seckin) two to three hours at least. (dr peter salgo) did you have surgery? (ruta biteman) no, i did not. (dr peter salgo) so, what was offered youin terms of control of your symptoms going forward? (ruta biteman) the pill, basically. (dr peter salgo) and what did you say to that? (ruta biteman) i didn't really have a choiceat that point -- either bear with it and try to get pregnant, or it seemed to go hand inhand, or take a pill.

and, so, are you on the pill now? (ruta biteman) i am no longer on the pill. i took it for many, many years, and was concernedabout taking it for so long, gave myself a break, and the pain came back, so i went anotherroute and went with an i.u.d. (dr peter salgo) okay -- an i.u.d. (ruta biteman) mm-hmm. (dr peter salgo) how are you feeling rightnow with the i.u.d.? (ruta biteman) i think, for me, it's reallyworked out. it's controlled.

(dr peter salgo) so you didn't have surgery. someone like him didn't go and take all thecells out. (dr peter salgo) but by controlling the cycling,you controlled your symptoms. (dr peter salgo) is that good enough? (dr lisa harris) well, that sounds, to me,like the ultimate thing to do would be to have surgery followed by hormonal therapyto try to control it, and i think that the problems that many of us don't know that thereare surgeons like tamer that are able to do this type of surgery. (dr tamer seckin) but it's interesting.

your symptoms somewhat diminished, but youalso said you had painful intimacy. (dr tamer seckin) did they get better? or did you have any bowel symptoms like constipation,painful bowel movement, or your back pain did not disappear? (ruta biteman) the back pain, i did have that-- yes. (dr tamer seckin) so you, at present, don'thave any symptoms because of the i.u.d.? (ruta biteman) very minor. it's definitely subsided. (dr tamer seckin) wonderful.

(dr peter salgo) so, again, my question, whydo anything more at this point? would you do anything more? (dr tamer seckin) unless there's a stronghistory of ovarian cancer in the family, i wouldn't do anything more. i would be checked by sonograms routinelyto make sure that there's no growing of the lesion or somewhat developing constipation. i think your -- not every endometriosis progresses. (dr peter salgo) mm-hmm. okay.

now, you have in front of you two of the pre-eminentphysicians in america. this is your shot to ask for a second opinion-- any question you've got. fire away. (ruta biteman) [ sighs ] oh. so many questions. (dr peter salgo) try one. (ruta biteman) [ chuckles ] is there any ideawhere it really comes from? i mean, the backflow you mentioned of thatendometrial – (dr tamer seckin) well, that's one of thetheories.

(ruta biteman) okay. (dr tamer seckin) however, every woman havebackflow. the caveat is when this backflow really happens. not every backflow happens in the same period. we are suspecting today this backflow probablyhappens during birth of young girls. it's sudden withdrawal of the maternal hormones. we know that 6% of the newborns we can observelike a mini period in newborns, and that is one area. the other time is before the real period starts,there is a time from the breast development

until the period starts. there is action continues on the uterus. there could be backflow then. however, i have to also warn, it's not onlybackflow. there is genetic predisposition, the uterineconfiguration anomalies like double uteruses, or occult septums, or [indistinct] of theuterus, and, more importantly, there is people may be born with it, too, genetically, sothat's also valid. it's called [indistinct] -- the way it isstructured. so, but most likely, the disease is associatedwith the periods.

i believe in that theory a little bit more,but i respect the other theories, yeah. (dr peter salgo) i'm gonna leave with onequestion for you. knowing what you know now, having been throughwhat you've been through, what advice do you have for women who are experiencing thesesymptoms? (ruta biteman) oh. i would say, first of all, follow your instinct,your gut. if you're not getting all the answers thatyou need, just keep looking for them, educate yourself. that's empowering in itself, and talk to otherwomen.

i have learned from just doing this interviewshow here today that so many people do not know yet what it is and don't know that theirlives, or how their lives are affected by it with family and friends and so forth. (dr peter salgo) well, thank you so much forbeing here. panel, thank you, of course, for joining us,as well. and i want to thank you, of course, for yourinsight into this case, and to end today's show, here's this week's "second opinion 5." (dr jorge carrillo) hello. i'm dr jorge carrillo, and i'm going to tellyou five things about endometriosis.

first, endometriosis is a benign conditionthat usually affects reproductive-age women in which the inside tissue of the uterus isimplanted outside the uterus. this brings inflammation to the surroundingorgans when menses occur. it frequently occurs next to the ovaries,the fallopian tubes, outside the uterus, even sometimes will affect bowel or bladder. second, endometriosis can be asymptomatic,but usually you will experience very painful periods. you may also have pain with intercourse orinfertility. long-term, this condition is a very frequentcause of chronic pelvic pain.

next, a doctor will usually start treatmentbased on clinical suspicion, but the diagnosis is surgical. we do a laparoscopy and take samples of thetissue that seems abnormal. fourth, you can help the discomfort by usingnsaids like ibuprofen. the real question is, are you planning toconceive any time soon? if the answer is yes, the goal is to makethis happen spontaneously, with medications, or with the help of an infertility doctor. if the answer is no, the goal is to stop yourperiods, and this we can do with birth-control pills, injections, or implants, for example.

and lastly, indications for surgery are toconfirm the diagnosis if we can't control symptoms with medications, if we identifyan ovarian cyst, if there is infertility, or if we suspect involvement of organs likebowel or bladder. depending on goals for future fertility, wedo a laparoscopy with removal of lesions versus a hysterectomy. a hysterectomy is not always the answer sinceyou could have other chronic pelvic pain conditions. and that's your "second opinion 5." (dr peter salgo) thank you so much for watching,and remember, you can get more second opinions and patient stories on our website at secondopinion-tv.org.

you can continue the conversation on facebookand twitter, where we are live every day with health news. i'm dr. peter salgo, and i'll see you nexttime for another "second opinion." (announcer) "second opinion" is produced inconjunction with u.r. medicine, part of university of rochestermedical center, rochester, new york.